TheDevastationofLivesandLies:

ThosewithLymediseaseandrelatedchronicinfections respondtothe InfectiousDiseasesSocietyofAmerica's(IDSA's) requestforcomments. January4throughFebruary7,2012: 2,350Comments 490Shares 389Likes

Contents:
DocumentRecipientsList.............. Introduction......................... CongressionalLeaders'Letter: OutdatedGuidelinesforTreatingLyme DiseaseShouldbeRemovedfrom GovernmentWebSiteUsedbyDoctorsas ResourceforMedicalProtocols........... StatusofNational&StateLymeDisease Legislation........................... IDSAFacebookWallComments.......... Obituaries........................... USPoliticalFiguresDiagnosedwith LymeDisease........................ PublicFiguresDiagnosedwith LymeDisease........................
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34 5 67 7 8251 252 273 273

RecipientsList
PresidentBarackH.Obama VicePresidentJosephR.Biden,Jr. HarryReid(DNV),SenateMajorityLeader MitchMcConnell,(RKY)SenateMinorityLeader EricCantor(RVA),HouseMajorityLeader NancyPelosi(DCA),HouseMinorityLeader USSenateCommitteeonHealth,Education,Labor& Pensions DemocratsbyRank: TomHarkin(IA)* BarbaraA.Mikulski(MD)* JeffBingaman(NM) PattyMurray(WA)* BernardSanders(I)(VT) RobertP.Casey,Jr.(PA) KayR.Hagan(NC) JeffMerkley(OR) AlFranken(MN) MichaelF.Bennet(CO) SheldonWhitehouse(RI) RichardBlumenthal(CT) RepublicansbyRank: MichaelB.Enzi(WY) LamarAlexander(TN) RichardBurr(NC) JohnnyIsakson(GA) RandPaul(KY) OrrinG.Hatch(UT) JohnMcCain(AZ) PatRoberts(KS) LisaMurkowski(AK) MarkKirk(IL) USSenateCommitteeonAppropriations DemocraticSubcommitteeMembers: SenatorTomHarkin(Chairman)(IA)* SenatorDanielInouye(HI) SenatorHerbKohl(WI) SenatorPattyMurray(WA)* SenatorMaryLandrieu(LA) SenatorRichardDurbin(IL) SenatorJackReed(RI) SenatorMarkPryor(AR) SenatorBarbaraMikulski(MD)* SenatorSherrodBrown(OH)

RepublicanSubcommitteeMembers: SenatorRichardShelby(Ranking)(AL) SenatorThadCochran(MS) SenatorKayBaileyHutchison(TX) SenatorLamarAlexander(TN) SenatorRonJohnson(WI) SenatorMarkKirk(IL) SenatorLindseyGraham(SC) SenatorJerryMoran(KS) PresidentialCommitteefortheStudyofBioethics AmyGutmann,PhD,Chair JamesW.Wagner,PhD,ViceChair LonnieAli,MBA AnitaL.Allen,JD,PhD JohnD.Arras,PhD BarbaraF.Atkinson,MD NitaA.Farahany,JD,PhD AlexanderG.Garza,MD,MPH ChristineGrady,RN,PhD StephenL.Hauser,MD RajuS.Kucherlapati,PhD NelsonLeeMichael,MD,PhD DanielSulmasy,MD,PhD MassachusettsHouseCommitteeonPostAudit& Oversight DavidP.Linsky,Chair BenjaminSwan,ViceChair BruceAyers JenniferE.Benson SheilaC.Harrington JonathanHect StephenStatSmith HarriettL.Stanley ThomasM.Stanley DavidM.Torris AdditionalGovt.OfficialsConcernedwithLyme Epidemic ScottBrown(RMA) SusanCollins(RME) HughFarley(NYStateSenate) AlFranken(DMN) ChrisHarris(TexasStateSenate) TimHolden(DPA) ChrisGibson(RNY) KirstenGillibrand(DNY) FrankLautenberg(DNJ) JosephLieberman(ICT) JohnReed(DRI)

CharlesE.Schumer(DNY) ChristopherSmith(RNJ) BartStupak(DMI) SheldonWhitehouse(DRI) FrankWolf(RVA) InfectiousDiseasesSocietyofAmerica(IDSA) ThomasG.Slama,MD,FIDSA,CurrentIDSAPresident BarbaraMurray,MD,FIDSA,VicePresident StanleyC.Deresinski,MD,FIDSA StanfordUniversity InternationalLymeandAssociatedDiseasesSociety (ILADS) LeoJ.Shea,III,PhD RaphaelStricker,MD RobertBransfield,MD DanielCameron,MD,MPH NationalInstitutesofHealth FrancisS.Collins,MD,PhD,NIHDirector NationalInstituteofAllergyandInfectiousDiseases (NIAID): AnthonyS.Fauci,MD,NIAIDDirector CaroleA.Heilman,PhD,Director,Divisionof MicrobiologyandInfectiousDiseases

CentersforDiseaseControl ThomasR.Frieden,MD,MPH,Director,Centersfor DiseaseControlandPrevention;Administrator,Agency forToxicSubstancesandDiseaseRegistry AmericasHealthInsurancePlans(AHIP) MichaelE.Abbott GeorgeC.Halvorson PharmaceuticalResearchandManufacturersof America(PhRMA) ChrisViehbacher,ChairmanofthePhRMABoard JohnJ.Castellani,PresidentandChiefExecutiveOfficer Aswellasnumerousmediaoutlets,intheUSand abroad. *Denotesmembersservingonmultiplecommittees.

 Who?TheInfectiousDiseasesSocietyofAmerica (IDSA)postedthefollowingquestiononits FacebookwallonJanuary4,2012,at12:04pm(eastern): Whatwouldyouliketoseefromyoursocietyinthecomingyear? professionalmembership,peoplestrickenwith ThoughthequestionwasintendedfortheIDSAs andabroadtooknotice,seeingitasoneofthe LymediseaseandtheirlovedoneshereintheUS fewopportunitiesthatweveeverhadtomake ourvoiceshearddirectlytotheIDSA (andtheworld)regardingtheoutdated, inaccurateandcorrupt IDSALymediseaseDiagnostic &TreatmentGuidelines. When?ThoseaffectedbytheLymediseaseepidemic beganpostingonJanuary4,2012,andthe postingcontinuesdaily.WeusedFebruary7,2012,asthecutoffdatetobeabletocreatethis attentionthismonth(February2012). documentandbringittoyourimmediate Where?TheIDSAsFacebookwall,whichcanbefoundathttps://www.facebook.com/IDSociety What?AsofFebruary 7,2012,thereare: 2,350Comments 490Shares 389Likes 99percentofthecommentsareaboutthedevastationof Lymediseaseanditscoinfections andcomplications. Withindayswehadpostedover1,000comments, thoughmanyofushadourpoststakendownby wall.Wordofthisuniqueopportunitytraveled theIDSAandarenowblockedfrompostingonits swiftly,andwentviralwithintheLymediseasecommunity globally,withinthefirstweekofposting. How?Sincewesawmanyofourpostsbeingremoved, wesetupaparallelFacebookwalltocopy everyonespostsonto,andwemonitoredtheIDSAs walldailyforseveralweeks,24/7,inshifts.We thengatheredupasmanycommentsaswecould toformthisdocument(whichcontainsvery minimalediting),tookupacollectionforprinting, andwearenowbringingitdirectlytoyou. Why?Becauseweneedanswers,weneedthetruth,andweneedtohave ourlivesanddignityrestored.Toomany liveshavebeendevastated.Too manyhaveneedlessly died.

LymeDisease:TheDevastationofLivesandLies

Thedespairinthisdocumentispalpable.Pleasehelpus.
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UpdatedGuidelinesforTreatingLymeDiseaseShouldbeRemovedfromGovernmentWebSiteUsedby DoctorsasResourceforMedicalProtocols FridayJanuary20,2012 Contact:DanScandling JoeMcNulty (202)2255136 OUTDATEDGUIDELINESFORTREATINGLYMEDISEASE SHOULDBEREMOVEDFROMGOVERNMENTWEBSITE USEDBYDOCTORSASRESOURCEFORMEDICALPROTOCOLS Washington,D.C.(January20,2012)ThreemembersofCongresswhohaveworkedtohelppeoplewith LymediseasewantoutdatedtreatmentguidelinesremovedfromagovernmentWebsitethatdoctorsuseasa resourceformedicalprotocols. InaletterreleasedtodaytothecompanythatmanagestheNationalGuidelineClearinghouse(NGC),Rep. FrankWolf(RVA),Rep.ChrisSmith(RNJ)andRep.ChrisGibson(RNY)saidtheguidelineshavenotbeen thoroughlyreviewedinoverfiveyears,aconditionforinclusioninthedatabase.Theyurgedthecompanyto removetheguidelinesuntiltheyhavebeenfullyreviewedandrevised. TheLymediseaseguidelinesoftheInfectiousDiseasesSocietyofAmerica(IDSA)havebeenhighly controversialandhavebeenresponsibleforinsurancecompanydenialsofLymediseasetreatments,the congressmenwrote.Wehaverecentlybeeninformedthattheseguidelineshavebeenreinstatedonthe NGCWebsite,notwithstandingthefactthattheyaremorethan5yearsoldand,hence,arenolongercurrent. Ourconstituentsareconcernedthattheseguidelineshavenotbeensubjecttoacompletereviewforcurrency andthatthemethodologyofanyreviewhasnotbeendisclosedasrequiredbytheNGCsguidelines. Belowisthecompletetextoftheletter: VivianH.Coates,MBA VicePresident,InformationServicesandHealthTechnologyAssessment ECRIInstitute 5200ButlerPike PlymouthMeeting,PA194621298,USA DearMs.Coates: AsyourorganizationiscurrentlycontractedbytheU.S.DepartmentofHealthandHumanServicesU.S. AgencyforHealthcareResearchandQuality(AHQR)tomaintaintheNationalGuidelinesClearinghouse(NGC), wewritetoyouasrepresentativesofareasthathavealargeandgrowingLymediseaseproblem.Our constituentshaveagaincontactedusaboutanissuethatneedsimmediateattentiontoprotecttheirwelfare. Asyounodoubtknow,theLymediseaseguidelinesoftheInfectiousDiseasesSocietyofAmerica(IDSA)have beenhighlycontroversialandhavebeenresponsibleforinsurancecompanydenialsofLymedisease treatments.WehaverecentlybeeninformedthattheseguidelineshavebeenreinstatedontheNGCWeb site,notwithstandingthefactthattheyaremorethan5yearsoldand,hence,arenolongercurrent.Our 6

constituentsareconcernedthattheseguidelineshavenotbeensubjecttoacompletereviewforcurrencyand thatthemethodologyofanyreviewhasnotbeendisclosedasrequiredbytheNGCsguidelines. OurunderstandingisthattherecentlyresubmittedguidelinesarebasedontheJuly2010FinalReportofthe LymeDiseaseReviewPaneloftheInfectiousDiseasesSocietyofAmerica,whichspecificallywasnotcharged withupdatingorrewritingthe2006Lymediseaseguidelines.Thisaforementionedreviewpanelwas convenedpursuanttoanagreementbetweentheConnecticutAttorneyGeneralandtheIDSAtoendthe AttorneyGeneralsantitrustinvestigationintotheIDSAs2006Lymediseaseguidelines.The2010panel recommendedmorethan25revisionstotheguidelines,whichhavenotbeenaddressed.Wehavebeen presentedwithconsiderableevidencethattheNGCprocess,whichrequiresthatguidelinesbereviewedfor currencyanddisclosureofthemethodologyfortheprocess,wasnotcompliedwithbeforereinstatingthe guidelinesuntil2015. WeurgeyoutofollowNGCcurrencycomplianceprocedureandremovetheguidelinesuntiltheyhavebeen fullyreviewedandrevised.ThemissionoftheNGCistoprovidephysiciansandotherhealthprofessionals, healthcareproviders,healthplans,integrateddeliverysystems,purchasers,andothersanaccessible mechanismforobtainingobjective,detailedinformationonclinicalpracticeguidelinesandtofurthertheir dissemination,implementation,anduse.Onlyacarefulandtransparentprocedurewillremovethecloud thathashungovertheseguidelines. Thankyouforyourseriousconsideration.Welookforwardtoyourreply. Sincerely Rep.ChristopherSmith Rep.FrankWolf Rep.ChrisGibson

OURNATION:
Onanationallevel,therearetwobillsthatwe urgeyoutosupport: HR2557:ToProvideFortheEstablishmentofthe TickBorneDiseasesAdvisoryCommittee Sponsor:ChristopherSmith(RNJ) Cosponsors:TimHolden(DPA),BartStupak(D MI),FrankWolf(RVA) S1381:LymeandTickBorneDiseasePrevention, Education,andResearchActof2011 Sponsor:Sen.RichardBlumenthal(DCT) Cosponsors:ScottBrown(RMA),SusanCollins (RME),AlFranken(DMN),KirstenGillibrand(D NY),FrankLautenberg(DNJ),JosephLieberman (ICT),JohnReed(DRI),CharlesSchumer(DNY), SheldonWhitehouse(DRI) 7

OURSTATES:
Onastatelevel,thefollowingstateshavepassed legislationtohelpallowLymepatientstoreceive diagnosisandtreatment: Connecticut Massachusetts Minnesota NewHampshire NewYork RhodeIsland Texas Otherstateshavebillsthaturgentlyneedtobe passed.Manymorestateshavenolegislation (proposednorpassed)whatsoever.

ToddMeeseHowaboutacureforLymedisease? JohnCoughlinExplaintouswhywearesosickandyou Actuallylet'sstartwithsomehonestyaboutthe can'ttellusanythingbutmakeuplabelsandsaythere disease. isnocure..Howaboutallthosethatareslipping throughthecracksbecauseofyourguidelines.Docsare JoanneDraysonAnhonestreviewoftheLymeDisease afraidtooverdiagnoseLymesotheydotheexact oppositeandsendpeoplehomestillsick!Weneed GuidelineslookingatthesciencepresentedattheIOM changetoomanysufferingnowtoignoreanymore... workshopandacknowledgingthatallisnotknown aboutthisemergingcomplexdiseasewithit'smanyco KimTarboxThereisa infections. tremendous needforIDSAto CristopherYulish Iwouldliketosee retractthedegradationofanill LaurieDamsellFaheyTheFive allofthedoctorswhodraftedthe peopleandadmitthatyourdue ThousandorsoofusonFacebook 2006LymeGuidelinesexiledfrom diligenceisincomplete withChronicLymeDiseaseto regardingLyme.Reevaluatethe havetreatmentoptions. theSocietyandbarredfrom oathpriortoadministrationof Medicineforconflictsofinterest. MDlicensing. JaisibelSullivanSomehonesty They have put private and business andunderstandingaboutLyme interestsaheadofthepublic KimTarboxPreferablybeforeI wouldbeatthetopofthatlist, die? thanks. interest.Thisisunforgivable. GinaLickliterI'dliketoseea MarcellaRosenbergLess Redeem yourself and start fresh by reevaluationofyourstanceon proliferationofdrugresistant helpingthethousandswhoare ChronicLymedisease....sick microorganisms. sufferingwithadiseasetheycanget patientsshouldn'tbetreated withthesuspicion,resistance, JacqiEulerHonestyaboutLyme norecognitionforduetothe Diseaseandlessrestrictionson andridiculeIfacedwhen damagefromasmalltyrannical thedoctorswhotreatpatients seekingtreatmentwithoneof withChronicLyme! yourphysicians.Ithinkit'stime groupof"experts." for somerealopenminded MadisonLewisChangeinyour discussionofthistopic,given Traindoctorstohelpthosewhoare stanceagainsttheexistenceand theriseoftickbornecasesthat sick,educatethepublicwith treatmentofChronic/Latent HAVEbeendocumented...How Lyme.Fartoomanypeoplehave manyhaveslippedthroughthe accurateinformationanddevelop diedandaresufferingseverelyas somerealtestingmethodssonoone cracks? aresultofthemisinformation else has to suffer again. you'veputout.Correct CristopherYulishIwouldliketo yourselvesbeforeyouloseall seeallofthedoctorswho respectfromtheMedical draftedthe2006Lyme Community.Thefilm/dvd'EyesWideOpen',opened GuidelinesexiledfromtheSocietyandbarredfrom manyeyestoyourlinkstoinsurancecompanies..Be Medicineforconflictsofinterest.Theyhaveputprivate andbusinessinterestsaheadofthepublicinterest.This aboutTrueMedicalFact.ThisisMedicine...Thisisnot isunforgivable. aboutmoneyandpolitics. Redeemyourselfandstartfreshbyhelpingthe LoriSullivanMangrumBetterguidelinesfortreatment thousandswhoaresufferingwithadiseasetheycanget oflatestageLymeDisease.MoreLymeLiterateDoctors. DoctorstohavefreereigntotreatLymeaccordingto norecognitionforduetothedamagefromasmall theirpatients,noonepersonhasthesameDNA tyrannicalgroupof"experts." thereforehowcanweallrespondthesameto treatment? Traindoctorstohelpthosewhoaresick,educatethe publicwithaccurateinformationanddevelopsomereal LisaCalistaBottoMoreLymediseaseawareness.Ittook testingmethodssonooneelsehastosufferagain. threeyearstobefreeofmyLymedisease.Thisinsanity needstobeaddressed.

JillV.EastonAdmittingthattickborneandinsectborne diseasesareinall50states,thatitisnotjustanEast Coastdisease.IwasbitteninSanDiego,California,bya tickinaresidentialareawhilestandingoncementand contractedLyme,BabesiaDuncani,Ehrlichia, Anaplasma,Bartonella.Myelderlyfatherwasbitten fouryearslaterbyamosquitoinSanDiegoandgot LymeandBartonella. IwouldliketheIDSAtoreturntomemylifesavingsof $400,000,thatIhaveusedtopayoutofpocketmedical expenses,9yearsofsufferingfromdisseminated diseases,mysuccessfuladvertisingcareer,myathletic prowess,myhealth,myhopetogetmarried,mylooks, myabilitytodothesimplethingsinlifethatotherstake forgrantedallbecausetheheadofInfectiousDiseases atoneofthelargestmedicalcentersinSanDiego refusedtobelievethatLymeDiseaseexistsinSan Diego,eventhoughIhadseentheticks,hadanEM rash,hadaCDCpositiveWesternBlot,wasalready respondingtothefewantibioticsIcouldgetfrom anotherdoctor,andinfact,hehadseenaLymepatient threeweeksbeforemeanddismissedherwithasmuch ignoranceandarroganceashedismissedme. Ipraythatnoneofyoueverhastoendurewhatwedo. Ifyou'veeverhadapet,everwalkongrass,everdo gardening,everwalkanywhere,situnderatreeorare simplyinthewrongplaceatthewrongtime,eachof yourdoctorsandtheirfamilymembersareatrisktogo throughwhatwegothroughduetoyourguidelines. MadisonLewisdittoonthe'ExhilefromtheSocietyand barredfromMedicine're:thedrswhodraftedthe2006 LymeGuidelines!! BambiAlberttobegivenoptionsandtherightto choosehowwewanttobetreatedforCHRONICLyme disease. ChristyHudsonTogetadiagnosisforLymeDisease before6yrs,acloseencounterwithdeathand$50k+ later. BambiAlbertWehavetoldyouenoughtimesIDSA whatwewant,whydon'tyoustopaskinganddo something??? BenedettaDiLymeMoreresearchandsupportfor diagnosingandtreatingLymediseaseandotherrelated tickinfections.

DianeLymeBallouAdmitthetruthaboutChronicLyme Diseaseandallowdoctorsandpatientstomake educateddecisionsonhowtheyshouldbetreatedfor thisdevastatingdisease. JenniferLaurenBaileyRobinsacknowledgementof chronicLyme,fulfillmentofthehippocraticoath,and substantialandreasonabletreatmenttothosesuffering fromchronicLymeanditscoinfections. NaomiRachamimAnhonestevaluationofthescience andevidenceofchronicLyme.Alookatwhatweas patientshavebeensufferingforyears.Cristopher,Ilike yourcommentaboutanewboardwithmemberswho donothaveconflictofinterest. AmberGipeForsomeunderstandingandsupportof ChronicLymeDiseaseandforuswhoactuallysuffer fromLymediseasetonolongergobankruptinhopesof gettingbetter!!!weneedawarenessandbetter treatments!!dontaskwhatsocietywantsunlessyour FINALLYreadytolistenandmakeachange!!!andp.s. letLymedoctorstreatthewaytheyfeelisnecessary,if wearewillingtoputourlivesintheirhandsthenwhy trysohardtostopus/them! MalloriMargareteducatethepublic!iwassickwith Lymedisease&coinfectionsfor22yearsbefore knowingwhatwaswrongwithme.i'm26now&i'm barelyabletowork.myqualityoflifeisafractionof whatitshouldbe&i'mconsideredmorefunctional thanmostwhohavelatestageLymedisease.because doctorsareignorant,iturnedtoholisticmedicine&it's savedmylife!ihavealongwaytogobutican'thelp butthinkhowmucheasierthiswould'vebeenif educationwasavailable..tome,mydoctors,myfamily. JillJustissIwouldliketoseeappropriatetreatmentfor thosewithchronicLymediseaseandastoptothe persecutionofLymedoctorswhodaretotreatthese patientswithlongtermantibiotics. PetervonTiesenhausenTonolongermarginalizethose afflictedbyLymediseaseandrelatedVectorBourne InfectiousDiseases.Pleasethrowoutyourexisting guidelinespertainingtothisnowandhavesomethat willactuallyhelppeople.ThosepeopleI'mmaking referenceto,desperatelyneedyoursupport. NicoleNewellitwouldbegreattoseeyouacknowledge thatchronicLymesexistsandletdrsknowitisokto diagnoseandtreatpplwhohaveit....icannotevengeta

diagnosisforiteventhoihavetestedpositiveforit threetimesiamtoldinsteadthatihaveeverythingelse. insteadofbeingtreatediampushedawaywithno treatmentatall....howmanyyearsamiandothers expectedtosufferwiththisdiseasewhileyouturnyour backanddonothingtohelp. KarieThulonKlimPleasedonotdelayinreformingthe policyontreatmentforChronicLymeDisease.Besure toincludeallofthenewandgrowingbodyofscientific research. TomMortonWholeheartedlyagreewithMrYulish's commentsaboutLyme. TomMortonSpeakingasaphysicianitisstrikingand sadtorealizehowmuchthisissueissquelchedby mediaoutlets..... KarieThulonKlimIwaitedforyearstohavethis scourgeofanillnessrecognized.It'stimetopay attentiontothesuffering,revisetheguidelines,andto progressivelyintegrateresearchasnewinformation becomesavailable. JenniferMiddletonIsufferedfor18yearsbeforebeing dx'dinMay.Ilostthemostproductiveyearsofmylife.I amonly7monthsintotreatmentandstillsoverysick.It istimetoadmityourmistakesandbecomeaplacefor healingandrestorationofallofuswhosuffer.Thisis theleastyoushoulddo. MitchGordonStoppretendingthatyourguidelinesare basedonscienceandknowledgeablemedical treatment.Yourguidelinesdocumentisfullof ignoranceanddeliberateliesdesignedtopandertothe insuranceanddrugindustries.WhyisDr.CharlesRay Jonesstillfightinginthecourtstosavehiscareer?Why can'tDr.EvaSapi'sandtheUniversityofNewHaven's Lymeresearchgetpublishedinamajormedicaljournal likeJAMA?Whyareamonth'sworthoforalantibiotics stillbeingpushedasthestandardofcareforacomplex ofdiseasesthatsuchatreatmentregimendoesn'teven touch?Admityourdishonesty,startover,andSTART LISTENING. SuzanneCiskowskiAreasontobelieveinyou,theCDC, thegovernment,thedr's,thepeopledoingthetests& thenthepeoplewhoreadtheresultsagain,ahopeto helpthousandsofthosesufferfromLymedisease&all thoseotherinvisiblediseasesthateverybodydoesn't seemtocareabout,awishthatImaysomedaybeable

toifnotworkthenatleastwakeupinthemorning& haveadaythatIcanevencleanmyhomewithout wonderingifIwillbehospitalized,adreamthatdoesn't turnintoanightmare&beabletotakeawalkevenjust tocheckmymailwithoutthepossibilityoffainting& thengoingunconsciousforhours,andofcoursethe realitythatImaybecomeastatistic&haveittakeme dying&anautopsytofinallydiscoverwhatIhad. I'vehadLymesincethelatesummerorearlyfallof 1969wheniwasonly6yrs.oldfromatickbite,thetick wasimbeddedinmyheadfordaysbeforemymom actuallyrealizeditwasatick&notascabfromabump onmyhead.Plushavingmultiplepositivetests includingtheElisa&westernblot.Andthenmaybe somedayitdoesn'ttakeover40yrs.togetaLyme diseasediagnose.Thiswasonlyalittleover2yrs.ago. I'vebeenverysicksincethebeginningof1991whenall ofmyhopes&dreamswerestolenfromme.Ieven triedtocontinuemyeducation&workuntiltheendof 2001.I'monly48yrs.old&deservealifeasdoesthe thousandsthatarebeggingforyouhelp.Eachyear manyLymesuffersdie&someofthemdon'teven knowtheyhavethisdiseasesoallweaskistobe recognized&counted. MitchGordon...andmycommentsarebasedonbeing marriedtoaLymesuffererof8or10years running...whoselifehasbeensavedandgradually improvedbyaLymeliteratenaturopathicdoctor,while everyoneatourHMOwhohassupposedlytriedto addressherLymeandbabesiabasedonyourgarbage Lymeguidelineshasbeenineffective,ignorantand dismissive. AnnGoldmanPleaseretracttheexisting2006Lyme Diseaseguidelineswhichareseriouslyflawed.Nowthat CornellUniversityhasproventhatchronicLymedisease existspleasestopmisinformingthepublicandPrimary CarePhysiciansaboutvectorbornillnesses. EvaEklundItistimeyoustartwork.Itcouldbeanyof younext.Anyofyourlovedones.Andthenyousure wouldliketheknowledgeofanyILADSdoctor.Families infecteachother,momtochild,sexuallyandwho knowsmore.BorreliaanditsCoinfectionsare worldwide.AndyoutheIDSAisresponsibleforthe guidelinesinmanycountries.BeingthebigUNITED STATESOFAMERICA.Showit!!! MadisonLewisIfyoudon'tchangeyournonmedically basedGuidelines,andyourattacksonthefewLyme

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threat...justdowhatsinyourpowerbeforeitstoolate, specialists,likeDr.Jones,morebabieswillbebornwith alreadytoolateformanywhohavediedofLyme...you Lyme.AndwithoutDr'slikeDr.Jones,whospecializesin havebloodonyourhands..HELPUS treatinginfantsandchildrenwithLyme,thesechildren won'tgrowuphealthy...theywillgrowchronic..ordie. DebiGriffithsOfcourseIwouldlikeacurebutwhatI EvaEklundOhandwhataboutallthepeoplenotknow wouldreallylikeisacknowledgementthatchronicLyme theyareinfected...giving disease"exists"andreally Debi Griffiths Of course I would like a blood...thereismorethanticks needstreatmentforlonger thatinfectus.Notonlydowe than30dayswhenithasbeen curebutwhatIwouldreallylikeis needlongertreatmentsand undiagnosedformanyyears acknowledgementthatchronicLyme individualtreatments.Weneed andhascauseddamageto disease"exists"andreallyneeds thehelptogettheinformation manybodysystems.Oncethat treatmentforlongerthan30days out.Preventionisthekeyand happens,I'dliketothenbeable tohavepractitionerswhocan imsureyouhaveheardit whenithasbeenundiagnosedfor dealwiththeLyme,thetoxins before.Ifyourenotgoingto manyyearsandhascauseddamage andtheregulartreatment putbetterguidelinesoutthere to many body systems. Once that neededjusttokeepusstable. forthemanyalreadyinfected. Openyoureyes!!!Andthe happens,I'dliketothenbeableto peopleatrisk!!! Iwouldlovetohavebackmy havepractitionerswhocandealwith executivemanagementcareer theLyme,thetoxinsandtheregular JoBrendleYatesTorecognize nottomentionthe$1+million treatment needed just to keep us thatCHRONICLymedisease dollarsinsalaryIhavelost exists.Andthatitisindeed whenIcouldn'twork,allofthe stable.... moneyIhavespenton becominganepidemic.My treatments,myathleticplay husbandisbeingtreatedin timewithmyfamily,theabilitytodrivemycar,carryon Alabama,althoLymedoesn'texisthere....right?!?!?If aconversationwithoutlosingthewords,sleepandnot hehadgottenthepropertreatmentwhenhistickbite occurred,hewouldn'tbeinthebattleforhislifeagaint feellikeaprisonerinmyownhome.Iwantthatfor thisviciousdisease.Whatwillittaketoopentheeyes everyonewhohassufferedwiththisfor,inmycase20+ yearsbeforeweirdhealthproblemswerefinally ofthoseintheIDSAtoseehowterriblethisdiseaseis?? diagnosed.Idon'tevencareanymoreifthiswasabio Probablyoneofyourownchildren/grandchildren,your warefarethingallIwantisacknowledgementofthe spouse,etc......tocomedownwiththis"unexplainable" diseasepastdays,treatment,supportivetherapiesto disease.OneofyourowntohavetoseecountlessDrs. helpusgetbacktoworkandonwithourlives.Wedon't thattellthemthereisnothingwrongwiththem,that likebeingthissick! theyarecrazy,thattheyjustwantattention.Ismoney, politics,andpowermoreimportantthanaperson'slife. DanaJohnsonhaveaheart Takeastandand"dowhatisright"!! KathyObalCarlstromIwouldliketoseeagovernment YvonneForeyTrysavinglivesinsteadofignoringdying orchronicallyillpeopleWORLDWIDE..UKfollowYOUR oversightcommitteeputinchargetothoroughlyreview corruptguidelinestoobutwontacceptUSAblood thedangerouslymisleadingmisinformationputoutby test...somethingsdrasticallywrongonalllevels...Ididnt theIDSAregardingLymeDiseaseandcoinfectionsand knowIhadLyme,likemanymothersandpasseditonto thecuriousreasonsbehindit,becauseithasbecomea mychildrenandthemtotheirchildren...Inthewordof nationalcrisis.Whatisit?Conflictofinterest(money)? mydoctor"ohyesLymediseaseisakiller"thenturned Medicalpeerpressuretoconform?Pride?Surelyit'snot hisbackonmeduetoYOURguidelines...Thesedoctors ignoranceanymore.Peopleandchildrenareliterally arescaredandturnpeopleaway...IForshouldwesay dyingandsufferingandyourgroupcontinuestoputout WHENithappenstooneyoulovedoryourself,then totheinternationalpubicsomethemostinaccurate medicalinformationIeverseen.Ifyoucan'tparticipate wouldyoulistenprobablynotbecauseyouhavethe inthefieldofmedicinehonestlyorusebasiccommon powerandwouldgettreatedasBUSHdid.Were senseinyourguidelines,thensurelyit'stimeforthose beggingyoufromallovertheworldtowakeup!its whocan'ttostepdownfromtheirpositionsontheIDSA beyondpandemic....allowdr'stotreatwithout

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IDSA. board.Idonotsayanyofthesewordslightly.Changeis needed.Thereasonswhythisishappeningneedtobe Whenadoctorwhoisamemberofyourdinnerclub addressednow.Arethereanyhonestpeopleonyour statessuchthingsit'sarealsignthatsomeneedtobe board?Iambeginningtoquestionthis.Ithinka yankedofftheirHighHorseandgetbusybeingadoctor. dismantlingofyourgroupisneededwithfreshnew peopleputinchargewhohavenoconflictsofinterest. LeonoraArnautHowaboutputtingsomepeoplein Thiswouldhelpsavelivesaroundtheworld. placethatwillandcanactually LisaHilton Iwouldlikeforthem makeadifferenceinregardstothe LisaHiltonIwouldlikeforthemto continualdenialandflawedtesting recognizethatmanypeopleare torecognizethatmanypeople andmessedupguidelinesthatthe sufferingfrom"invisible"illnesses aresufferingfrom"invisible" IDSAstandssofirmlybehindwhen andbeingignoredbecausethey illnessesandbeingignored itcomestoLymedisease!This chosetoignoreit.Iwouldlikefor becausetheychosetoignoreit. shouldNOTbeaboutprofit!How someoneunbiasedtostart manymorehavetodiebeforethe researchingwithanopenmindand Iwouldlikeforsomeone IDSAadmitsthatthey'vebeen findthelinksandcausesofallthese unbiased to start researching diseasesandseewhywearen't wrong?Ourmedicaldoctorsknow withanopenmindandfindthe thereisahugeproblemhere,but gettingbetter. areafraidoftheIDSA,sotheir linksandcausesofallthese LeslieBoswellFarrellForthemto diseasesandseewhywearen't handsaretied.Yourguidelinesare actuallyputsciencebeforeprofit. cruelandcriminal. getting better. TimHartTelltheTruthabout GaryGlaserYoushoulddoa treatingLyme!Longterm voluntaryinvestigationofyour AntiboticsWORK! boardusinganexperiencedindependentgroupthatwill verifythateachboardmemberiscapableofparticipate indecisionmakingwithoutbeinginfluenced.SinceIDSA TracySchittlerRewritetheguidelinesforLyme doesnotreporttoanyotherorganizationoris Disease...stoppretendingthisissomethingthatisjust responsibletodocumentactivitiesoftheboardifyou goingtogoaway.Wearerealpeople..withareal wontdosotheIDSAisnottobetrustedandisthen diseasewhoshouldbeabletogetrealcarebyDoctors useless. whodonthavetobeafraidtotreatusthewaythatwe needtobetreated,fortheamountoftimeweneed LizaCammeronTossoutthosepainful,dated, treatment.Iwouldalsoliketoseesomenewfaceson fraudulentgroupofguidlinesyouhaveforLyme theIDSAboard,onesthatarewillingtostandupfor patients.AndstoppersecutingtheirDrs.Idon'tknow LymeDiseaseandthepeopleaffected!!Howmany whicharoundmeisgrowingfaster,morechronicLyme morehavetodie...shameonyou!!! sufferers,orhorrificallymisinformedDoctorswho remainsobybelievingthe2006guidelinesIDSAputout. DebbieThompsonFirst,donomoreharm. Ataskforceneedstodismantlethecriminalgroupof Drswhosettheseguidelines,inordertolinetheir Cheryl'sLymePageIwouldliketoseemore compassionandLESSarrogancefromthemembers. pockets,andputoutthesciencebasedGuidelinesLyme Maybeofferclassesonhowtospeaktopatients?Use DrsandLymePatientsneed. moreadulttermsthan"vaguesymptoms"or "compellingstories"whenweareaskingyouformore AngelicaJohanssonChangeyourstanceinthequestion answersandREALhelptogetbetter. ofLymedisease IspoketoanIDSAmemberinBethesdaMDwho'sonly LoriDitzlerHagarmanAdmitthatLymeDiseaseisan epidemicandfindacure! answertomeforwhatIcoulddobecauseI'mstillsick was"doyoubelieveinGod?"Isaid"well,yes."Hesaid CathyZichichiBalsamoWorkontreatingLymedisease! "Thenmaybeyoushouldpraymore"hefurthertoldme OKMaybenoteventreatBUTAcknowledge!EDUCATE heagreedthereisflawsintheguidelinesbutheisn't goingtogoagainstitaslongashe'samemberofthe yourselves!Reviewguidelinesandrevisit!

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TonyLyConfesstothetruthsaboutLymeDiseaseand starthelpingpeoplesothebloodonyourhandswill cease...Eitherway,therewillbejusticeoneday...God seesallthings. GabbiHicksOpenyoureyes&startsupportingLyme diseasevictims MelissaKoshenIDSADON'TYOUCARE?LYMEDISEASE ISEVERYWHERE!!Startbeingpartofthesolutionand stopbeingpartoftheproblem. DawnjaMcCormackRealizeLymeDiseaseisrealand everywhereandhelpgetdoctorstorecognizeandtreat itCORRECTLY!!! LieseJarboeopenyoureyestochronicLymeasan infectionandnotapostinfectionsyndrome.hello,ifthe BbisstillinthebodythebodyisstillINFECTED!!!you don'tneed6bandstobesick,onlyneededtoreportthe CDC.Getyourheadsoutofyourassesandoutof politicsandmanagedcareandtreatpeoplelikehuman beingswhoneedrealmedicaltreatment.ihada positivebloodtestandanIDSAprovidertoldmeididn't haveLymeandthatthereisnoLymeinNC.after treatmentbyanotherdoctor,iambetter.youareliars andthieves! KatStricklandIamtenyearsinandproofthatChronic Lymeexists.Iwanttoseetheguidelineschangedto matchthestandardofcarewedeserveandhavearight tointheUSA.Thisisstillafreecountryandweshould stillhavetherighttoselecttheprotocoltreatment optionswithourdoctorandforhowlongittakesto reachafunctionallifestyle. GarySchittlerJrHowboutnewguidelinesandbetter testingforLymedisease!!! SusanLalorHelpLymeDiseaseVictims. KatStricklandInaddition,Ialsowilllikeforallofthe doctorswhodraftedthe2006LymeGuidelinesexiled fromtheSocietyandbarredfromMedicineforconflicts ofinterest.Theyhaveputprivateandbusinessinterests aheadofthepublicinterest.Thisisoutrageousand shouldnolongerbeignored.Lymeisnotgoingtogo away.Itwillonlyincreaseeachyear.Thisisaplaque. KristiL.ServiesDosomethingrealandseriousabout Lyme!

RobinSklarFisherIwouldlovetoseedrs.whobelieve incompassionandbelievingtheirpatientswhenthey describesymptomsinsteadofdismissingthem.Too manypeoplesufferfromthesamesymptomsforitto beintheheadofsomany.Explainwhysomanyof thesepatientsimproveandevengetwellwhenthey obtainqualitycarefromallmd.Insteadofattacking llmd'sbecausetheiropinionsdifferfromyoursquestion whattheyareseeingandwhytreatmentsthey prescribeoftenprovidereliefwhileyoujustleave patientstodeteriorate.Igrewupinafamilywith doctorsandwasalwaysraisedtobelievetheywanted tohelpendsufferingsoIquestionwhyareyouallowing theuntoldsufferingofmillions?MakeyourNewYears Resolutiontobefairandhonestandreviewyour stance.Listentothemillionspleadingforhelp! ClaireStJamesI'dliketoseeyouacknowledgechronic Lymebothitsprevalenceanditsseverity.WorkWITH ILADSandotherhealthcareprofessionalstofind solutionsforthisdisease.Ifyoutrainphysicianstocatch theacutecases,you'llhavefarfewerchroniccasesto dealwithinthefuture.Thankyou! AnneHowardAcknowledgeChronic/LatestageLyme Disease.PleaseexplainIfitdoesnotexist,whyarewe (thoseofuswiththisillness)notallowedtodonate bonemarroworblood?37+yearswithLymedisease ElizaNokomisKeepyourpoliticsandyourmoneyout ofmyhealthcare.Stopharassingmineandmy children'sdoctorstheysavedourlives,notyou. AcknowledgetheneedformoreresearchintoLymeand coinfectionsbeingtreatedinawaythathelpspatients nothavetorelyonanecdotalevidence(whichworks betterthanyourguidelinessincewe'renotwaitingfor youtoputmoneyintoreliableresearchbeforewedie). Encouragedoctorstolearntheclinicaldiagnosis criterionnotsomeCDC"reportingcriterion"inorderto identifysickpatients..educatedoctorsthatthereare morestrainsofLymeandonlystrainhasatest (thereforeitisnotallinourheads).Traindoctorsand hospitalstotestforcoinfectionswhichrequire differentmedications(again,soonceour"Lyme"is "cured"wedon'thavetolayinbedwonderingwhy we'restillsick).Educatepatientsthatthisdiseaseis sexuallytransmittableandabletobepassedtochildren inutero.Makeresourcesavailabletospeechand languageproviders,OT/PT,psychprovidersandschools sothatourchildrenstandachanceofmakingitthru onesingledamnday...thatshouldbeagoodSTARTfor youguys.

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SusanHooverIhavehadLymeDiseasefor29years; Don'tknowhowyoupeoplesleepatnightafterallthe diagnosedjustoneyearago.IwastoldIcouldnothave harmyouhavecausedsomanysickpeople.Shameon you. itbecausewedon'thaveLymeinOhio.Really?Well,we donow.HowdoI"like"allthepreviouscomments?I LaurieDamsellFaheyAllof wishforalldoctorstohaveto ushavethesamesymptoms take anextendedcourseon ChristinaGingerich IhavehadLymefor oftheNonexistentdisease.. Lymetogetuptospeedwith 20+yearsanddiagnosed2/2011.Folks itsotheycanrecognizeitand inthechatroomsinthe begintreatingforit.Iama supportgroups..alldesperate don'tunderstandwhyI'mworsenow nurseandIhearpatientssay forhelp..Mysalivaryglands thanbetter...howdoyouexplainit "Ihurtallover."I aresoswollenthatIhave whentheydon'tbelieveyouaresick?I beentoldthatIprobably immediatelythink"LYME!" wouldliketoseeDrs.educatedandlearn butnever,everhaveIseena havecancerbythree tolistentotheirpatientsratherthanjust patientbediagnosedwith separatedoctors!NOLYME!! Ohwellthatdoesn'texistwe Lyme.Itisasadsituation. doingthe"usual"treatment.Whyare willcallitsomethingelse???I theysoclosemindedtothis?Yes,itisa wenttoahospitalandgot KenBartonHowabout,More verysadsituation. DrswithHIVondecision treatedforanUnKNOWN makingboards, EnvironmentalInfectionthe and.....Lyme.?Thisisnotall poordoctorwasafraidtocall aboutLyme.Weneedtobeproactivewherethereare itforwhatitis??Howdoesthatmakessense?Because TheIDSAcan'tcallitanythingthehospitalturnedme failingsinbothoftheseinfectiousdiseases. awayandperhapsIwilldie???Likemanyothersbut whatdoesitsayontheirdeathcertificate?notLyme? KimberlyAndersonElliottForIDSAmemberstonot havesevereconflictsofinterestincludingrelationships JeannineComtoisBennettPleaseacknowledgethat withManagedCareandBigPharma(vaccinepatents) cloudingtheirjudgment.Nosingleorganizationorany ChronicLymeexists.Achangeintheguidelinesis Physicianshouldmakemoneyoffdenyingtreatmentto necessary,asiseducatingDoctorsaboutrecognizing patients!"Todonoharm"Rememberthatpledge?!?! Lymebeforeithasachancetobechronic.Toomany peopleinthemedicalprofessionbelievethedrivelthat ChristinaGingerichIhavehadLymefor20+yearsand wasputintotheguidelines.Longtermantibioticsdo diagnosed2/2011.Folksdon'tunderstandwhyI'm work.IwentforyearsandyearsfromoneDr.tothe worsenowthanbetter...howdoyouexplainitwhen next,onespecialisttothenext,untilIfinallyfounda theydon'tbelieveyouaresick?IwouldliketoseeDrs. LymeliterateMDwhohasbeenabletohelpmeheal.It educatedandlearntolistentotheirpatientsrather hasbeenalong,hardroadandIamnotthroughyet. thanjustdoingthe"usual"treatment.Whyaretheyso UsetheWesternBlotandgetridofthetiterasthemain closemindedtothis?Yes,itisaverysadsituation. test. LaurieDamsellFaheyMyfriendisCDCPositivelivesin NicoleB.ithinkitisclearthatLymepolicyneedstobe reexaminedandindependentresearchneedstobe andwasbornandraisedinARIZONAyesARIZONAthe conducted.appropriatetreatmentforLymediseaseand statethathasthemostcasesofErlichiainDogs..but coinfectionsisdesperatelyneededbythehundredsof theIDSAdoctortoldheritsnotpossiblethereisno thousandssufferingfromthisdisease!!!! LymeinArizona..soshetestedherforHIVandthen turnedaway.EvenmyNeurologistsaidmostIDSA doctorsareafraidtotreatLymePatientsandwont.The LoriDitzlerHagarmanChronicLymeexists!Ihavehadit poorgirlhasbeensickforyearsandhashadthirteen foratleast15yearsandcounting. operations..forthesamesymptomsweallhave. KenBartonchangetheguidelinesregardingLyme'? LaurenHentschelLamoreauxLearnthetruthabout LymeDiseaseanditscoinfections.Itcananddoesgo KenBartonmorepeoplewithHIVworkingintheField! chronicwhenuntreated.AndthereIShopeforthoseof Itseemsthatorganizationshavegottenawayfromthis uswhohaveit.ButuntilYOUgetitright,wehaveto overthepast5yearsorso!

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fighttoothandnailtobetreated,whilebeing"treated" likeoutcastsandnutjobsbythetraditionalmedical community.Getthefactsfrompeoplewhohaven't beenpaidoffbyotherparties,learnwhat"latestage" or"chronic"Lymesufferersgothrough,andCHANGE THEGUIDELINES.Peoplearesufferingneedlesslyhere. ElizabethGrimmI'dliketoseeoursocietyacknowledge chronicLymebothitsprevalenceanditsseverity.I wouldlikeforoursocietytoacknowledgethatdisease andticksdon'tsticktostateboundariesandthatevery stateispotentiallyinfectedwithLymediseaseticks. WorkWITHILADSandotherhealthcareprofessionals tofindsolutionsforthisdisease.Ifyoutrainphysicians tocatchtheacutecases,you'llhavefarfewerchronic casestodealwithinthefuture.Also,pleasewatch UnderOurSkin,thedocumentaryandconsiderthe informationithas.Thankyouforallowingustobe involved! KimTarboxTherewillcomeadaywhereyoucanno longermakesyndromesandblamepsychosomatic reasoningsforlostlives.Therearehundredsof thousandsofwalkingdead...oncehighfunctioning highlyeducatedpersons..withdestructiveandfalse labelsontheircharts.Thecontinuedunwillingnessto addressthiswilleventuallyleadtothedemiseofyour integrity.Yourcurrentcompromisewillcostfarmore thananyfuturemonetaryorscientificgain.Please ...respectfully...don'tjustlisten..buthearapeoplein greatthreatofourliterallives.Tellus...whatwillittake toaquireyourcommitment? DavidReinhardtWhyisitthatfewerthanhalfadozen doctorsintheentirestateofMIwilltreatLymeandthat itisalmostimpossibletofindthem?Ifthefirstfouror soIwenttohadevenconsideredImighthavehadLyme (withhistoryofaticbiteandbullseyerash)9yrsago, maybeIwouldn'tbeinfectednow!Areallthosedoctors afraid,forsomereason,togetinvolvedwithLime diseaseandit'spolitics? WhitneyJohnstonWoodburnIaminagreementwith everyonethatlatestage/chronicLymediseaseneedsto berecognized.Doyourealizehowmuchpatientshave tospendjusttobeabletowalkeachday?Weare moms,dads,husbands,wives,childrenetc.thatare tryingtocontributetosocietyandmaketheworlda betterplacebutduetothelackofattentionyouchoose topaytoLymediseasetherearemanypeopleunableto liveouttheirdreamsandusetheirtalents.Morethan thatpeoplearedyingbecauseofmisdiagnosisorlate

diagnosis.Therearesomanystoriesoutthere.Maybeif youtookaninterestinthepeopleyouare"serving"we wouldsupportyoumore.Whycan'twework cooperativelytogether?WhatisithurtingtheIDSAto acknowledgeweexist? MadisonLewis@Whitney:Theanswertoyourlast question..$$$$$$$$ DebbieBatesQuallsLYMEdiseaseisREALinevery state.NOWisthetimetostepupandtakeaction.No needforprolongingsufferingofthousandsofpeople whoallfightfortheirliveseveryday,tryingtoeducate themselvesandothers,whenmanyofthemhavevery littleenergyforanything.Somanysimilarstories,itis hardtobelievethatintodayssociety,thereissuch difficultyinmakingheadwaytogetinhelpatall, (recognition,testing,support,research,treatment,etc) CourtneyBailey quitperpetuatingthemyththat"Lymediseasedoesn't exist"incertainstates.Itiseverywhere! QuittellingallofusthatchronicLymediseasedoesn't existandthatlongtermantibiotictreatmentisn't effectiveorsafe.Itcanbebothifdoneproperly.W/o thattreatmentIwouldbedead. QuitlettingthefewLymeliterateDr'swecanfindbe hunteddownbystateboardsfortreatingussimplybc theyrefusetofallinlinew/yourflawedtreatment guidelines!Atleastbehonestenoughtoadmitthat your"society"doesn'tknowenoughabtLyme/chronic Lyme/coinfectionstoputoutasetofrules(ucall guidelines)tobeappliedacrossallsituations.Can'twe evenadmitthatwejustdon'tknowenoughabtthis diseaseandit'svariousformstoestablishastrictsetof guidelines? Useallofurprofitsfromurboardmembers'patents onLymetest/testkitstowardsindependentresearch forLyme. ForGod'ssakeatleasteducateallstudentsinmed schoolthatLymecanbesexuallytransmittedandthe signsofacuteinfection.Wecanagreethatacute infectionexistscan'twe?Andthatcoinfectionsexist. HereinOhiotheDr'sbarelyknowwhatacuteLymeis letalonethesignsofchronicinfectionorthevariousco infections!Thatiscriminal. StopteachingDr'sthatallLymecasespresentwitha

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rash!Thatismyththatmustbedispelled! Workw/independentresearcherstocomeupw/ betterdiagnostictools!Todothisyourboardmustnot includememberswhoaremakingANYprofitonany partoftheLymediagnosisincludingtests,kits,and medsorvaccinesforthetreatment/preventionofLyme. Attheveryleastpleaseuseyourfundstoeducatethe ENTIREcountryabtLymeitssymptomsand transmission!Thisisnotjustacoastaldisease!Lastly,I willsaythatitmakesmesick(nopunintended)thatso manyofusaretoldthatourillnessisinourheads.We aresickdammit!Andweneedeffectiveclinical diagnosisandtreatment.Weareentitledtodignityand respect.Untilyoucanadmitthatyouhavemade mistakesandthatthereissomuchweneedtolearnabt Lymebeforeweshouldpublishguidelines(whichare usedlikedictatesdirectlyfromgod),therewillbe hundredsofthousandsofmisdiagnosed,undertreated andtrulyillpeoplewillcontinuetosuffer.Werefuseto besilenced!#OccupyIDSA SusanMcInnisAcknowledgementthatchronicLymeisa diseasethatiscausingtremendouspaintohundredsof thousandsofpeopleworldwide.Acknowledgementthat yourguidelinesfortreatingLymediseaseareflawed, outofdate,andpunishingthesickest. Acknowledgementthatthoseguidelinesneedchange andthegutstoactuallyfollowthroughandfixthem. ChrisPowellcometothetablefordiscussionwithan openmind.includeILADSdocsinequalproportionto IDSAPanelmembers.betweenthetwogroupsperhaps patientsCANbehelpedandtheepidemiccanbeslowed byPROPERtesting,PROPERdiagnosisANDPROPER treatment....LONGtermworksforalotofpeople includingmydaughter.thehealthriskofdoingnothing =deathsowechoosetotreatandhappilysignany releasenecessarytogetthejobdone!!! DebbieSmithLettheexpertdoctorstreatusaswe needtobeandhelpwiththelawssothatinsurancehas topay.I'veheardtoomanystoriesofpeople'sstruggles withinsurance,existenceofLyme,diagnosisofLyme, etc.If"westernblot"waslistedasastandardtestand withareliablelabthenmaybepeoplewouldget diagnosedsoonerandnothavetogotosomany doctors,labs,MRIs,etc.Inthelongrunitwouldalso saveinsurancecompaniesmoneyifwedidn'thaveto gothroughsomuchtogettheanswer.Thanks.

AshleyOrdeckiIwouldliketoseeyourguidelines changedaboutLyme.Thistimewithnoconflictsof interest.WhynotuseLymeliteratedoctorsthistime thatareactuallyimprovingpatients?Itissuchashame thattheyaregettingtheirlicensessuspendedandtaken awaywhentheyaretheonlyonesthathelpus.Stop hidingthetruth.Somedayyouwillhavetoadmititonce therearetoomanyofustoignore.Itshouldn'thaveto cometothat.Pleasehelpstopallofthesuffering.Make thisatruthfulyear!ChronicLymeexists!Iknow becauseIhaveit.IhavehadLymefor2yearsbefore beingdiagnosed.21daysofantibioticsdidn'tcureme andneitherdidwaitingitout. AlanBurdgeSTOPLIEINGABOUTLYMEDISEASE ANDTICKBORNEILLNESSES! PEOPLEAREDIEINGANDYOUDONOTHINGBUTCATER TOTHE $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$ $$$$$$$$$SPECIALINTEREST!!!!!!! AlanBurdge http://www.youtube.com/watch?v=JpPFKpFXmQ&feat u=player_embedded DrHaroldSmith'stestimony www.youtube.com LymeDiseaseisthemostrapidlyspreadingdisease, fasterthanHIV/AidsTBandCancer AlanBurdge http://www.youtube.com/watch?v=rlwBuFAI JoyBurdge www.youtube.com AlanBurdgeWATCHTHETRUTHABOVE!!!!!!!!!!!!!!! GaryBarrettI'dliketoseeyoutakeresponsibilityfor themultiplethousandsofpeoplewhohavesuffered becauseofyournarrowmindedviewofchronicLyme Disease.Manypeoplehavesufferedduetoyour unreasonable,outdatedandunscientificguidelines. Morepeoplecommitsuicidefromthisdiseasethan dyingfromthediseaseitself.Whyisthis?It'sbecause everywheretheygolookingformedicalhelptheycan getitbecauseofyourasinineguidelines.Theycan't standthepainandsufferinganymore.Theycan'tstand bemockedandnottakenseriouslywhentheygoto doctorsforhelporendupintheERwithstrange symptomsandhorriblepainallovertheirbody. Whenareyougoingtospendmoretimeandmoney searchingforacureforthisevildiseaseratherthan goingaftergooddoctorswhoaretryingtohelpusand

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addressedandseriousmoneyneedstobespent alleviatethepainwesufferfromthisdisease?Your investigatingacureforit.Ifyoucan'tdothis,then policieshavecausedharmtomillionsofLymesufferers please,dousallafavor,closeyourdoorsanddon'tdo everywherebecauseyourorganizationdeniesthe anymoreharmtous.You'veharmedmillionsofus,it's seriousnessofthisdisease.Whyisitthatinalmost everystatewhensomeonegoestoaninfectiousdisease timeyoustopharmingusandstarthelpingus! doctortheysay,"wedon'thaveLymediseaseinour state"?Howcanyousaythistopeople?Getonthe ArielMarquetPleaseacknowledgethatLymediseaseis Lymeforumsandreadaboutpeoplewhohavesuffered acomplexdisorderusuallycomplicatedwithmultiple withthisdiseaseforyearsand tickborneinfections. yearswithnorelief.Your DebbieSmithI'dliketo SusanMcInnis Acknowledgementthat doctorssay,"well,iftheystill addanothercomment...I chronicLymeisadiseasethatiscausing sufferaftertakingantibiotics hearaboutpeoplebeing tremendouspaintohundredsof forafewmonthsthenthey diagnosedwithMS, havesomethingelsewrong Fibromyalgia,ChronicPain thousandsofpeopleworldwide. withthem".Really?Howcan Syndrome,Lupus,Arthritis, Acknowledgementthatyourguidelines thatbewhensomanypeople etc....someofthesesame fortreatingLymediseaseareflawed,out peoplehavealsofoundout nevergetbetter? ofdate,andpunishingthesickest. thatLymeDiseaseisthe Yourorganizationhasbloodon reasontheyhavethese it'shands.Youshouldbe ailments.DoctorsthoughtI ashamedofthewayyouhavetreatedthoseofuswho hadMS....ifIhadcontinuedonsteroidsinsteadoffinally havesufferedwiththisdisease.Quitplayingpolitics beingdiagnosedcorrectlywithLymeIprobablywould withthisdiseaseandgetyourheadoutofwherethe NOTbeheretypingthiscomment.Pleasehelp...thisis sundon'tshineandlookatthefacts,notyouroutdated Americaafterall. guidelines.Peoplearedyingsufferinganddyingfrom thisdisease,andwhatareyoudoingaboutit?Helping AlanBurdgeAssociationwiththeproductionofALSin peoplegetbetter,no!You'regoingaftergooddoctors meninLymeendemicareas. andhuntingthemdownandtryingtogettheirlicenses www.actionLyme.org takenawayfromthem.Enoughofthis!Youarenot MakeaTLRagonistbotsowecandoawaywithticks goingtogetawaywiththismuchlongerbecausewethe andfungalimmunesuppression. peoplewhosufferwiththisdiseaseareFEDUP!Weare NOTgoingtotoleratethisanylonger.Eithertakeus StephanieMichelleKealyMYsociety?Obviouslythis seriouslyandhelpusgetbetterorshutdownyour societyhas0interestinme,aLymepatient,whohas doors. seenover30doctorsandspentthousandsofdollars overthepast5yearstofinallyreceivethecorrect Youservenopurposetothoseofuswhosuffer diagnosisandtreatment.InAugust2011,Ibeganwhat everydaywiththisdisease.Nonewhatsoever.Iwould ismostlikelygoingtobeamultiyear(andthousandsof notwishthishorriblediseaseuponyouoryourfamily dollarsmore)journeytorecovery. members,yet,youletmeandmyfamilysufferwiththis daily.Ican'tgettreatmentforit,soIhavetofendfor AlanBurdgeIDSALYMEDOCTORS ARE2ndRATEATBEST!!!!!!!! myselfandselftreatbecausealmosteverydoctorinmy morerdrate. statedoesn'tbelieveweevenhaveLymedisease,and $$$$$$$$$$$$$$$$$$$$$$ noneoftheinfectiousdiseasedoctorsbelieveinchronic isalltheycareabout. Lyme.Sowheredowegotogethelp?There'snowhere NOTYOURHEALTH!! forustogo!That'swhysomanyofusaredesperate andtakemattersintoourownhandsandtrytotreat ourselvesanywaythatwecan. AndreaGarnerButtramSpendthepastthreeyearsin myshoesaftermyencounterwithatickhereinGA Wearesickandtiredofbeingsick.We'resickandtired whereLymedoesn'texist.IDSAyouwillnotbe rememberedfondly.Weknowandwewillnever,ever ofbeingignoredandmarginalized.It'stimeforyouto forget. wakeupandtakeusseriouslyandstartrealizingthat thistickbornediseaseisanepidemicthatneedstobe

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getarashletusknowhowyoufeel!InregardstoLyme KellyTolmanCurtisWow...somanypeoplewithLyme acuteandchronicournationisneedofseriouschange, Disease....IhavefibroandasfarasIknow,havenever you'remessingwithpeople'slives.Ihopeallofthese beentestedforLyme....Dotheyhavesimilar messagesgetpastthesocial symptoms.... KaetheMitchell Ihavetwochildrenwith mediainternthatpostedthis comment. KellyTolmanCurtisAlso, latestageLyme,bartonellaand whatIwouldliketoseeis babesiosis. They were never treated StephanieMichelleKealy moreresearchon becauseweneversawanEMrashortick. Kellyibelieveyoumost fibromyalgia,andwhetheror likelydohaveLyme.lookinto notitcanbetracedto Theyarenow,afteryearsofillnessand itasap...watchingthefilm bacteriaorviruses...Iworked specialistssayingtheyweremakingup "UnderOurSkin"shouldbe asanRNfor22years,and theirsymptoms,ontheirwaytohealth yourfirststop(it'sstreaming wasexposedtoallmannerof infectiousdieases;andIknow thankstoanamazing,nonIDSAdoctor. onNetflix).thencallyourPCP alotofnurseswhoalsohave ELISAswerenegative.Changeyourways, andasktobereferredtoa Fibromyalgia.... LymeLiterateMD. IDSA! LizaCammeronAnEndto LymeFrenzStopturninga yourcorruptDrs.Youhave blindeye.Thiswillbe killedpeoplewithLymebywhatyou'vedoneand EPIDEMIC. haven'tdone.Changetheboard.Changetheguidelines. AndreaGarnerButtramDoyouseethelittleboyinmy LoriCottonHobbsFamiliesandlivesarebeing profilepic?He's4yearsoldforthepastyearshe'shad tosettleforaparttimemombecausetherearemany destroyedbecauseofignoranceaboutLymedisease.If dayswhenLymeandallit'ssideeffectswin. everyoneatIDSAhadanimmediatefamilymember withthishorriddisease,thepoliticalissueswould disappear.Resolvetodowhatyouknowisright RuthJames@KellyTolmanCurtis:Kelly.I'vebeensick regardingLyme.LymeisinNC!!!!Mytickbitewastwo foralmostelevenyearsnow,disabledforfive.Myinitial diagnosiswasME/CFSandFibro. yearsbeforeIwokeuponedayandcouldn'twalk.I havefourkidstotakecareofandI'vebattledthisfor GuesswhatIhave?LYMEDISEASE. thepastyearandI'mstillnotwell.Ihavetopayfor mostofmytreatmentoutofpocket.DotheRIGHTthing ToobadnoonewouldTESTmeforitdespitemyasking andhelppeople. foryears! AshleyOrdeckiKelly,theydohavesimilarsymptoms.I ThinkallthatsocietyhasLOSTbylosingUS! wastoldbyonedrthatifmytestscamebacknegative thatitwasfibromyalgia.Ialsohadthepointtestdone.I don'tthinkthatdrwastestingforLymeatthattime KaetheMitchellIhavetwochildrenwithlatestage either.Iwenttoadifferentdrandgottestswithher Lyme,bartonellaandbabesiosis.Theywerenever treatedbecauseweneversawanEMrashortick.They andcamebackpositiveforLyme.Ialsoknowsomeone arenow,afteryearsofillnessandspecialistssayingthey whohadfibroformanyyears.Shehasitundercontrol weremakinguptheirsymptoms,ontheirwaytohealth now.But,Icouldrelatewitheverything!Inthe thankstoanamazing,nonIDSAdoctor.ELISAswere beginningIhadmostlymusclepainsandfatigueandas negative.Changeyourways,IDSA! timewentonthepainspreadandsymptomskeptpilling on. EvaEklundIwishihadthemoneytopayyoumore YvonneForeyDowereallythinktheywillreadour JennyGuzdekWhateveryoneelsesaidaboutLyme.Try comments,wehopesobutsomethingsaysthispostwill bedeletedliketheydeleteLymepatients...weneedto itoutforyourselfandprove30daysofdoxycuresthe copythemallandkeepthem...WEareouronlyvoicewe disease.Letatickbiteyou,waitafewdaysgotoseean have,onlyWEthathavesufferedendlessyearsofpain undereducateddoctorforthetickbite,takeyourdoxy andsuffering,bankruptcy,lossoflives,jobs,friendsand andseeifyou'rebacktonormal.Oh,andifyoudon't

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familywhodontgetit...WEneedtomakesurewe heard...somethingistellingmethispostnomatterhow profoundwontevengetlookedat,letalonetaken noticeof...Iaswellasthethousandsofothershopeit doesandthereisachange..butsomehowafteryearsof tryingeverything,dontthinkso..letsallcopythese postsandsendthemtowhoeverwethinkwill listen..whoeverthatmaybe..ourlocalnews,papers etc....Ipraywithallmyheartthatweallgetwhatwe rightfullydeserve,validation! AlyssaRyversAdoptingthewww.ilads.orgguidelines. KathleenO'ConnellIagreewiththeaboveposts regardingtheIDSA'sdenialthatChronicLymeiskilling people,ruininglives,andtearingfamiliesapart.PLEASE !! AmandaBlakerLymediseaseawarenessinCAstate parks!!!!!!!!!!!! KellyLehmanACKNOWLEDGECHRONICLYMEanddo somethinghelpfulaboutitinsteadofturningyourbacks onusandquestioningareillness.weareallfighting hard.wewillnotbesilenced.ihavebecomedebilitated overthepast15yearsfrombeingborn,YESBORN,with Lyme.worseyetihavehadtowatchmymother deterioratefromthisdiseaseandallthatcomeswithit. CHANGENEEDSTOHAPPENNOW.innocentpeopleare sufferinganddyingandyou,theIDSA,aredoing nothing.youshouldbeashamed. JillHessIwouldlovetoseeanaccurateLymedisease test,andmoreresearchontreatment. PamHaistyMoreresearchonLymedisease. SueBushIhaveCDCLymepositivelabs.Igetsickalot.I liveinSEAZwhere"Wedon'thaveLyme",despitethe factthatIhailfromNWIwhichisanendemicarea. Iamforcedtoselftreat.Iamhighlyeducatedonthe topic,moresothanANYMDIhaveeverMET.Icannot gettreatmentormedications. WhatIwouldliketoseeisforMD'stoeducate themselvesandstopreadingPharmaliterature,and startreadingsitesontheInternet,theyshouldbe betteratthisthanme. BTW,IREFUSETOPAYanyMDthattreatsmelikean idiot,orputstheirstaffortheirpatientsoreven

themselvesatriskdototheirselfimposedignorance. TheycanbillMedicarealltheywant,butnotadime comesoffmydinnertabletopayfornothing,tobe treateddisrespectfully,nohelporevencompassion. BeckyLeeTogeteducatedaboutLymeDisease,this includestheCDC&IDSAtoo.Inevergottherash,Idid howevergrowupcoveredinticks. CheriStinePublishedandintenseinterviewsofall doctorsregisteredwILADS;admissionofalackof educationandpropertraininginthemedicalschools(I sawatleast13specialistsover15yrswhogotitall wrongnearlykilledmewmedstosuppressimmune system);coordinationwresearchersinothercountries; regularsurveysbyLymepatients;checksandbalances; restraintonmedicalboardsbyallowingclinical diagnosisanddoctorjudgmentontreatment;the recommendationthatLymevictimsbeallowedtotake responsibilityfortheirtreatment;arecommendationto insurancecompaniestotrustdoctorswhentreating Lymevictims.Ihavemore,butthisisenoughfornow. Lymehasbeenanightmareformyfamilyandme,andit isinTexastoo! SueBushdo=due LindseyDuvalChangeyourguidelinestoreflect SCIENCE.STOPgoingafterdoctorswhoaredoingtheir jobsandstophavingtheoneswhocarehavetogointo hidingtoeffectivelytreatpeoplewhoaresuffering. AllowtreatmentsforchronicLyme,secondary infections,andpostLymesyndromes/autoimmune disorderstobecoveredbymedicalinsurance.Better educatethedoctorswhoareignorantaboutLyme.Stop limitingtreatmentoptionsforLyme.Pushforbetter diagnostictesting(IgeneX),notthesillylittleWestern blotthatispronetofalsenegatives. NinaMooreTellthetruthaboutLymeandthatChronic Lymeexists.Ihavethesamestoryasallotherssuffering fromLyme,beingillforover15years,toldIhadCFSby anInfectiousDiseasephysician,gotworseandfinally gotthecorrectdiagnosesofLyme,Babesiaand Bartonella.Lostmy27yearteachingcareertothis disease.BUTonceIgotthecorrectdiagnosesand startedtreatmentIamnowgettingmylifeback.People aresufferinganddyingbecauseofincorrectIDSA guidelinesanduneducatedphysicians.Thetimeisnow touncoverandsharethetruthaboutLymeDisease. SusanHooverInterestingcomment,KimTarbox,about

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beingthewalkingdead.YearsandyearsbeforeIeven knewwhatLymewas,Icalledmyselfawalkingdead person.IusedtosaythatIwasworkingonhavinga nervousbreakdown.IwassotiredIwouldfantasize aboutsomeonetakingcareofme.Andnoone understoodme. HeatherShirkeyAcknowledgementthatLymeisa chronicillness...whichincludeswhateveryoneelsehas alreadymentionedregardinghealthcare,insurance, choiceofDr,etc... LaurieDamsellFaheyIstartedwithafibrodiagnosis, chronicfatigue,tremors,nightsweats,lostmyabilityto talk,facewentparalyzedastheyearswentontook8 yearstogetsosevereIfellheadfirstdownthestairs. PumaOfThenorthAdoptinghonestLymedisease guidelines.Duetoyourpresentguidelinesittookme yearsandyearstogetcorrectlydiagnosedforLyme diseaseandcoinfectionswhichcausedmeahugeloss ofincome,IwastedlotsofmoneyonuninformedMDs whilelookingforanswerswhilesufferingfromhorrific cripplingneurosymptoms. Lymediseaseisnothardtogetandeasytotreatnor doestwotothreeweeksofabxalwayscureit.Diseased ticksareineverystateoftheUSA.Thepublicandallthe MDsintheUSAneedtobetoldthetruthaboutthis diseasethatisanepidemicandcanbepersistent. Vaccinationscancauseharm&betoxicaswell.WhatI wantfromtheIDSAin2012ismorehonestyintegrity andmorecompassion.Mylifewouldbedifferent& muchbetterifyouhadcorrectLymediseaseguidelines. InsteadIwasgivenunreliabletestingduetoyour guidelinesandtoldIdidnothavethediseasewhenI did. CamAlteeBrown1)EducationofallIDSAphysiciansof symptomsofLymestartinginmedicalschool. 2)HelpstopthemyththatLymeisonlyincertainstates. (Iknowacardiologistwhoinfactispositiveheacquired LymeinNorthFlorida.) AlysonCasePleasereevaluateyourstanceonChronic Lymedisease.NodiseaseshouldEVERbecontroversial, andthefactthatchronicLymediseaseISshould highlightthegreaturgencyformoreresearch. JanReberHammettAfterbeingdiagnosedwitha myriadof'floater'conditions[fibromyalgia,arthritis, carpaltunnel,cysts,etc.]inthe2+yearssinceadefinite

diagnosisofLymeDisease,itsurewouldbegrandtosee aseriousconcertedfocusonthelongtermdamageof tickbornbacteriatransmission,theillnessestheycause andappropriatetreatmentbytheconventional medicinecommunity. LaurenClydeI'dalsoliketoseesocietyacknowledge chronicLyme.Itistruethatticksineverystateare infectedwithLymedisease.PLEASEWorkwithILADSto findtreatmentsforthisdisease.Theguidelinesmustbe changedsothatinsuranceco'swillcoverthetreatment ofthisdiseaseaswell.Notonemoreman,womanor childshouldbemadetosufferbecausetheycannot affordtotreatthisterribledisease.Thedocumentary UnderOurSkin,toldthetruthaboutLymediseaseand thisshouldbeacknowledged.Thankyou! GinnyPassettoManyhavestatedthismuchbetterbut bottomlineis,theIDSAneedstogetintenselyinvolved withtheissueofchronicLymeanditsmanydebilitating coinfections.Howcanyoukeepdenyingthisdisease whensomanyhavebeendocumentedwithit?BLOOD TESTSTELLTHETRUTH!Ihaveafamilymemberwho hasbeensickwithLymefor9yearsnowandhasbeen morethanoncebeentestedandthebands show....Lymeanditscoinfections,despitetreatments receivedovertheyears.WHATAREYOUAFRAIDOF? Doctorshavebeenstrippedoftheirmedicallicensesfor tryingtohelppeople.Isn'tthatwhatmedicineis supposedtobeabout?NOTworryingaboutthepolitical controversieswithinsurancecompanies.Tocontinueto denytherearesomanywiththisdisease,reeksofa conspiracy.Youwoulddobesttoalignyourselveswith ILADSandothersuchorganizationsdedicatedtohelping peopletohealthnothelpingthemtotheirdemiseor debilitations!! ChristinaGalloLyonsWhatI'dlikefrommysocietyin 2012isfortheborreliaculturetesttobevalidatedby severalindependentlabs.Oncethatoccurstherewillbe nomorelyingIDSA.Areyouready??It'scoming,IDSA it'scoming.Andwhatfunitwillbetowatchallofyour doctorsscrambling.Betterhireafewmoreattorneys andPRpeoplethisyear. LauraGriffisReynoldsMy5yearoldsonhasLyme diseasefromthestateofTNwhere"thereisnoLyme disease"comeliveatmyhouseforaweek,seehowhe feelsandwhatwegothruwiththemedicine,diet...And seeifyoushouldchangeyourguidelinespitifuland Shameonyou!!

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down.WetookhertotheERwheretheywere MelissaAntalIdon'tknowwheretobegin.Myhusband concerneduntilwetoldthemshewasbeingtreatedfor andIandourtwochildrenwerediagnosedlastyear.I havehadChronicLymeDiseaseforatleast27years.I Lymedisease.Assoonastheyheardthat,theysenta wentfromdoctortodoctortodoctorandwasnever psychiatristtotalktoher(andtous).Afterbeingsent eventestedforLyme.IhaveeverysymptomandwhenI homewhileshewasSTILLparalyzed(andwithNO wasfinallytested,IwasCDCpositive.IfIhadknown assistance)ourpedirecommendedBostonChildren's beforeIhadchildren,Imayhavebeenabletospare Hospitaltheytoowereniceuntiltheyheardshewas themfromthisdebilitatingdisease.Now,wehaveto receivingIVantibioticsforLymeoncetheyheardthat, fightfortreatmentandwehavetofightforrespectand theytoosentthepsychiatristtotalktoher(andagain wehavetofightdoctors tous).Theytoldusshehad Puma Of Thenorth Adopting honest whoshouldknowmorethan conversiondisorderinother WEdoaboutthisdiseaseto wordsshewas Lymediseaseguidelines.Duetoyour convincethemthatthere subconsciouslymakingher presentguidelinesittookmeyearsand evenissuchathingas legsnotworksoshecould yearstogetcorrectlydiagnosedforLyme avoiddoingsomethingshe ChronicORCongenitalLyme. diseaseandcoinfectionswhichcaused didn'twantto.....mindyou, Howabouttakingoursidefor meahugelossofincome,Iwastedlotsof sheisonhomeboundasher brainfog,concentration, once?Wearesickandtired money on uninformed MDs while looking bodypainandfatiguearetoo andcouldusethesupportof foranswerswhilesufferingfromhorrific muchforhertoattend anorganizationthatshould school,shedoesn't bededicatedtohelping cripplingneurosymptoms. participateinany peoplelikeus!Peopleare dyingfromthisdiseaseandthousandsandthousandsof extracurricularactivitiesandrarelygoesout.Justwhat peoplearewalkingaroundwithitandhavenoidea! wasshetryingtoavoid? Helpus...PLEASE! Andhowcananydrintheirrightmindsendaparalyzed personhomewithnoassistance?Thankfullywehada JenniferJustissYouneedtoeducatedoctorsregarding portabletoilet,wheelchair,walker,etcleftfromwhen Lymedisease.Weneedresearchandweneeddoctors. mymomwasill.Wehavelittletrustleftinthemedical ChronicLymediseaseisafact.Itisanepidemic.Iwant toknowwhatyouaregoingtodoaboutit. communityandourdaughter,hasnoneleft.She recentlyhadhorribleacidrefluxthepainfromitwas YvonneLeistcreswelldefinitelytimeforIDSAto unbearablesherefusedtogototheERbecauseshe acknowledgethetruthaboutLymediseaseandit'sco knowstheywilldolittletonothingforher.Myhusband infections.YesIwasdepressedasIwastoldIwasbyan andIfinallycalled911again,theEMT'swerevery IDSAmemberwhorefusedtoevaluatemysymptoms, helpfuluntiltheyheardshewasbeingtreatedforLyme. basingherdiagnosissolelyonELISAresults.Fortunately Oncetheyheardthat,theydecidedthatshewashaving I'vesincefoundaLLMDtotreatthesymptomsIhad ananxietyattackandtooktheirtimegettingustothe whenIwasseenbytheIDSAmember.Getwiththe ER.ThankfullyanERdrlistenedtohersymptomshe truth...therearecountlessofnumbersofusouthere ruledoutabloodclot(duetoherPICCline)andthen suffering,somedyingbecauseofyourneglect! triedtreatingherforacidreflux. MargaretMcCormickPretoRodasMydaughter,now ThemedicalcommunityandIDSAMUSTWAKEUPand 16,becamesickjustover4yrsagoshewasdiagnosed realizethatLymeisaSERIOUS,CHRONIC(forsome,not all)illness!Newtreatmentguidelinesneedtobe withchronicmigraines,fibromyalgia,depressionand established,fundingforresearchmadeavailable.The tolditwasallinherhead.ShehadLymetestingdone, LymecommunityisTIREDofbeingtoldtheyhaveother butherpediatricianandneurologistcouldn'tagreeasto illnessessorbeingdeniedtreatment!ChronicLymeis whetherornotshewas+...howcan2drsreadatest REALifyoudon'tbelieveme,feelfreetocomevisit resultsodifferently?Thesepast4yrshavebeenhellfor withmydaughter.Shewillchangeyourmind.WAKEUP her.Shehassomebrightspots,butfewandfar IDSAandhelpallwhosufferfromthisawful,tricky, between. chronicformofLyme. InMayof2011shewokeupPARALYZEDfromthehips

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positive:Tohisdismayanddisbelief,CDCpositive!Even GinaMageeBecauseofyourselfinterestsandclosed then,herefusedtoacknowledgetheobviousbecauseI minds,IDSA,youareblatantlyruiningmanypeople's didn'tpresentarashorjointpain.Afteryearsofbeing lives,andthatincludescaringdoctorswhotrytotreat toldIneededpsychiatrichelp,Ithankedhimandfound peoplewithLyme.Whatareyouafraidofthatyoutreat amoreprogressivephysician. peoplethisway?Thereisnodisgraceinupdatingyour research,guidelines,etc...Butthereisdisgracein JCHoskinsfortheISDAtoacknowledgethatmany holdingfasttooutdatedwaysofthinking.And,notonly peoplearegettingsickfromtickbites.Peoplearesick that,youareperpetuatingthesefallaciesaboutLyme anddyingbecausethe diseaseattheexpenseof AmyTopperWatkins Acknowledgement organizationsdesignedtohelp manyothers.What that chronic Lyme exists. There are so patientsarenot.Educate. happenedto"firstdono harm?" manypeoplesufferingandbeingtreated KdLymeHonest,accurateand liketheyarecrazybecauseyourefuseto unbiasedresearchofLyme Ifyouwanttodoanything, acknowledgeitsexistence.Thinkabout diseasethat'snotintendedfor whydon'tyouupdateyour thesolepurposeofproving guidelines,educatemedical somethingotherthanyourpocketbooks. studentsanddoctors,and yourselvesright.Chargesof Lookatthefacesofthesick,my8year stopgoingaftergooddocs. crimesagainsthumanityfor oldsonbeingoneofthem,anddo Youarenotonlykeeping Wormseretalwouldbeniceas somethingtohelpthem. peoplesick,butyouare well. creatinglivesforthemthat arebecomingunbearable JoniBoydPleasefigureoutthe physically,mentally,spiritually,financiallyandthelist chronicorlatestageLymeisaREALillnesshurtingREAL goeson.Itwouldbemywishthatthemembersofthe peopletakingawaytheirlives,moneyandrobbing IDSAespeciallytheperpetuatorsoftheLymeguidelines, themoftheirhealthandfaithindoctors.Iamanurse beheldaccountableandbemadetopaydamagesto andIhavewatchedmycheerleaderdaughtergofrom thoseaffectedbyyouractions(becausetheyseem anA/Bstudentinhighschooltohavingtowithdraw criminaltome).IwishIcouldunderstandyourmotives. fromschoolmissingherprom,homecoming,friends, Whyareyoumakingsomanypeoplesuffer? EVERYTHING!!!!!Wearespendingourlifesavingstrying desperatelytogetherwell!!!IDSAGETADOSEOF McRaeHarrissLymediseasetruth/help! REALITY!!!!! MargaretMcCormickPretoRodasOnefinalcomment ThaneLymeIwouldliketoseeyoucomecleanabout YOU,IDSA,holdthehealthandwellbeingofmy yourcoverupofChronicLymeDisease. daughterandthousandsofothersinyourhandsDo NOTfailthem,pls! TracyHansYes,Iwouldcheertothehighheavenifthe IDSAtookanhonest,clearlookathowmanyfolksare BilliejoMillerRushADMITLatestage/chronicLyme trulysufferingfrominfectioustickborneillnessesand diseaseneedstoberecognized!!andyourtestingisan starttoeducateIDSAdocsappropriately.Anhonest revisionoftheguidelinesthatlooksatALLreputable EPICFAIL!!! literatureoutthere,wouldpreservethehealthof millions. LizaCammeronUnderOurSkinGoodMorningAmerica NationalCoverage ThaneLymeIwouldliketoseeyouatleasthavethe www.youtube.com couragetonotdeletethisthread. NationalnewscoverageonABC'sGoodMorning AmericaonawardwinningLymeDiseasedocumentary. CeceliaCecePriceJonesGreaterlistening&backingof Thisfilmchroniclesthecontroversyanddebates thosemembersofsocietythatareafflictedwithLyme surrounding... disease&/orcoinfections&thedocswhotreatthem &bringthembacktohealth! AlanRobisonAnIDdoctorgavemeaWesternBlot afterIdemandedthatheincludeitinthebatteryof testsheoffered.Itwastheonlytestthatcameback

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JDavidKocurekTorecoverpublictrust,thesociety mustdevelopguidelinesforandenforceintellectual honestyinallpublications,communicationsandany otherendeavorsormoresimply,betruetothe science. AmyTopperWatkinsAcknowledgementthatchronic Lymeexists.Therearesomanypeoplesufferingand beingtreatedliketheyarecrazybecauseyourefuseto acknowledgeitsexistence.Thinkaboutsomethingother thanyourpocketbooks.Lookatthefacesofthesick,my 8yearoldsonbeingoneofthem,anddosomethingto helpthem. WilliamJonesHopefullyRonPaulwilldoawaywith themifheiselected:) MonicaZmudaIhavehadLymediseaseforover4 years,multipletreatments.PositiveBlotandco infections.RecognizeLymediseaseinthechronicform. Iwasanurseforover15years,Inowcannotpractice duetoLymeDisease.IthinkaHUGElawsuitshouldbe broughtupagainstIDSAandthemoneybereturnedto allofus,plusmoreforthesuffering!!!Iprayyourfamily nevergetsafflictedwithLYME!Onlythenwillyoutruly understand.Wouldyouriskyourlifeandtestthe theory?Thereareunlimitedamountsofinfectedticksin everystatewaitingfortheopportunity!!!! JessicaGontarzDurfeeIwantsomeonetoacknowledge chronicLyme,formynineyearoldson'ssake. JoshCutlerIwouldlovenothingmorethantoseeanon biasedreviewoftheguidelinesforLymedisease.I wouldalsoliketoseeproofandevidencebased researchagainPROVINGthatChronicLatestageLyme diseasedoesnotexist. Clearlysomanypeoplearesuffering.Lookatthis!!Is thisinTHISMANYPEOPLESHEADS?Idon'tthinkso. Mostofushavelostourcareers,lives,homes,family andsomehaveevenlostlives.Allbecauseofwhat? Wearenotheretocauseissues.Wejustwantfairand justtreatment.ThiswillNOTstoptillwehaveproper treatmentandresearchforacure. ShowusPROOFPROOFPROOFfromunbiased researchersthatwearemakingthisup.Areyoureally goingtosweepthousandsofpeopleundertherugto die.

Whatifthiswassomeoneinyourfamilyfightingfor theirlife? VanessaBakerSimonIwouldlovetoseemore sensitiveandaccuratetestingforcoinfectionscarried byticks. CharlieHenryBladornPlease,please,pleaserevisit ChronicLyme.Toomanyaresufferingandcryingfor help.Wedon'twanttobesick,weWANTtobebetter. Withanearlydiagnosisthetreatmentisfairlybasicand notcostprohibitiveatall.Insteadthereissomuch ignoranceanddenialthatthishasturnedintoan epidemicwithuncountedfrustratedsufferers. ThaneLymeLymeDiseasehasdestroyedmylife.It's timeyouputtheinterestsoftheworld'ssocietyahead ofyourowncorruptedIDSASociety. AngelWilliamsSpellhaha......anditwouldbegreatto getaresponseafteraskingthisquestion...c'montellus whatuthinkaboutourresponses ShawnWatkinsIwouldliketoseean acknowledgementofChronicLymeDiseaseandthe effectivenessoflongtermantibioticsinfightingitby yoursociety. KristinMartinDosomethingaboutLyme.Peopleare losingtheirlivesandlivinginmiserybecauseofitand it'scompletelyunnecessary. JoshCutlerGuys,basedoffpreviousthreads/comments beingdeleted.Iwouldsuggesttakingascreenshotfor yourselfsothatwecanshareallofthisincaseitdoes getdeleted. ToddMeese 177+commentsin10hours.Areyou "Drs"listening?WEAREN'TGOINGAWAY!WEWILL NOTSITQUIETLY. LisaHiltonIwouldliketoseeallthese"invisible" illnessestakenserious.Wehaveacountryhereofsick peopleandignoringusisinhumane.Weneedresearch andweneeditdonebyunbiasedpeoplewhodon't alreadyhavetheirmindmadeupthatwearealljust crazy.Childrenaresick,peoplearedying,manyofus arecompletelydisabledatveryyoungages!It'stimeto admitthatthereisanepidemicandputegosorpast learnedconceptsasideandstarthealingpeople.

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JenniferBaysToombsStopdamningpeopletoalifeof painanddisability.StartbecomingapartoftheLyme diseasesolution,insteadoftheproblem. LisaHiltonAlsoIthinkit'stimetogetridofteststhat don'twork.Iftheyareinaccuratethenitshouldbea crimetousethem.Manydrshavenoideahow inaccuratetheseLymetestsALLare,andtheytellyou youdonthaveLymebasedonthem.TheCDCeven statesthattheyarenottobeusedfordiagnosisbut thatswhatdrsdo,becauseyouencourageitfor insurancereasons.Notfairtopatients.Startworkingfor thepatientagainandnottheinsurancecompanies. TinaSpockKopcikTheHippocraticOaththatyouhave takenshouldnotbeignored.Therearetoomanyofus whoarenot"mentally"ill,butphysicallyillfroma bacteriathatyoudownplayandturnablindeye.How manyothershavetosufferfromthisplaguethatis continuallysilenced?? Iwantthelast4yearsofmylifeback,beforethis nightmare,whenIwashealthyandstrong.Notnow whereIstillfacedoctorswhosay,"itcan'tbeLymeand itismostcertainlynotMS."Okthen,whatiscausingmy brainlesionsandproblemswithmynervoussystem.My MRI'sandbloodteststellthestoryforwhichyou choosetoignore. ThanksIDSAformakingalaughingstockoutofthose whohavebeenunfortunateenoughtohavebeenbitten byatick.Bytheway,tellyourIDSAbuddiestogetthere storystraightwhentalkingtopatients.Iknowit'sreally hardforyoutofathomthatadeermightstrayfrom MassachusettsintoConnecticutwithaninfectedtickon it.HowaboutstartingfromscratchandtestforallLyme bands?Ibelievethatwouldbeagreatplacetostart.If thatisnotsufficient,let'sgetgoingonabettertest.Our childrendeservebetterthantobedisabledbya bacteriasuchasLyme. KevinSThomasIwastreadedbyanInfectiousdisease specialistwhenIwasstdiagnosedwithLyme..She statedthatthereisnosuchthingasChronicLymeand thatsinceIhadamonthsworthofIVantbioticsIwas cured.Ididn'tknowanybetter..TwomonthslaterI relapsedandamnowsickerthenIwasinthestplace! TheLymetreamentguidelinesneedtobechanged! AndiMernaMccormickAdmitchronicLymeexistsand 4weeksofantibioticsareNOTenough!

CourtneyLynnLymediseasehasruinedmylifethusfar atonly26yearsofage.Iwentundiagnosedforyears andsufferedneedlesslyduetotheimpropertestingand ignoranceofsomanydoctors.Ithinkyoualreadyknow whatitisthatweallwant.Itstimeyouallstepuptothe plateanddotherightthing.Weneedproperstudies doneforeffectivetreatmentofthisdisease. SaraStegnerLehnerthetruthaboutLymedisease, chronicLyme,andcoinfections.Ireallydonotenjoy writingacheckouttomyhealthinsurancecompany everymonthandnothavingadoctorinmy"network" admitthereischronicLyme.Asidefromlivingalower qualityoflife,we'regoingbroke. JeanneBainIagreewithLisaHilton.Taketheseinvisible illnessesseriously.Lyme,Bartonella,PANDAS,etc.need tohavemoneyspentonresearchforallofthem. Congenitalinfectionsneedtobeexploredandnot discounted.Whenmysonwashospitalizedfor suspectedBartonella,theIDdocsdidn'tevenbotherto testhim.Nordidtheyexploretheideathatmyson's illnessiscongenital(whichitis).Theyscrewedhim. SCREWEDhimbytreatinghimfor24hoursandsending himhome. SubLymeContenderWAYTOGOLYMIES......whosaid wedidnthaveavoice.......heyidareutoaskusanother question...ihavetrulygottentickled...andloving it........... MichelleDeLiberoOrdeckiWhatIwouldliketosee fromyouisforyoutowakeupandstopbeingsostupid aboutCHRONICLYMEDISEASE.Twentyonedaysof antibioticsisridiculous.Getyouracttogether. SherriElsworthYouneedmorepediatricspecialist doctorsthatourLymeLiterate.BetteryetlettheLyme specialistdotheirjob!!Letthefamily'shaveinsurance thatcanbeusedtopayLymespecialistfortreatment. Nothavingfamily'shavetomoveinwiththereparents orgettingasecondorthirdjobjusttopayfortheon goingcostoftreatment.IagreeadiseaseshouldNEVER becontroversial.Youaskedsoyougottruthfromallthe peoplewhohavetosufferyourinadequatetesting process!!! JordanaPilmanisPleaseacknowledgetheexistenceof chronicLymeandthedamageitisdoingtopeople's lives,theamazingsufferingitisinflicting.Pleasehave IMPARTIALdoctorsreviewthesciencebetweenboth IDSAandILADSstandardsofcarenotjustwhatthe

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willbehelped.Googleitandfindadoseschedule(1 docswithamonetaryinterestinIDSArecommended droptostart).Youallareasstrongaswarriorsand testkitsandpharma/insurancecompanykickbackssay anyonepromotingIDSA'sstanceonchronicLyme is"science."Lymediseaseisspreadingandisbeing shouldbeashamedofthemselves. misdiagnosed.Peopleandinsurancecompaniesare payingthousandsofdollarsforcareformisdiagnosed StefanieManningReconsideryourguidelinesfor diseases.Justbecausetreatmenttakesawhiledoesn't testingandtreatmentofLymeDisease.Inearlylostmy meanitisnottherighttreatment. lifebasedonyourflawedpositioning.2weeksof antibiotic,thenrelapse.30days...relapse.14 PleasealsolookattheLymeinfectionstatisticsin hospitalizations,3ICUstays...doctorssawmyLyme caninesinColoradoandfindoutwhatvectoris rashes/bullseyeandwerescaredtodeathtotreatme, infectingthedogs,becauseit'sinfectingthepeople, sothey'dthrowmetothenextdoctorand"specialist" too!Pleaseeducatedoctorsthroughoutthecountry untiladoctorknewmyrash thatLymeisnolonger andsymptomswereLyme geographicallylimited. StefanieManning Reconsideryour related,hadpositiveblood Pleaseeducatedoctors guidelinesfortestingandtreatmentof resultsaftermonthsoffalse everywherethatLyme Lyme Disease. I nearly lost my life based negativetests,andsavedmy needstobetreated becauseoverthelong lifewithlongtermantibiotics. onyourflawedpositioning.... term,itisdegenerativeand progressive.Whyareyou Almost$800,000later,Ifinally Almost$800,000later,Ifinallyhavea doomingsomanytoso haveasomewhatnormallife somewhatnormallifeback,withpain, muchsufferingby back,withpain,weaknessand recommendingtwotiered otherlastingsymptomsthat weaknessandotherlastingsymptoms testingthatreturnsso madethis29yearold thatmadethis29yearoldcheerleader manyfalsepositives?We cheerleaderanddanceras anddancerasincapacitatedasan80 incapacitatedasan80yearold needbettertests!Weneed yearoldatage26.Thiscouldallhave atage26.Thiscouldallhave tohaveacknowledgement thatLyme&coinfections beenavoidedifyourguidelinessupported beenavoidedifyourguidelines theTHOUSANDSof requirelongterm theTHOUSANDSofsuffers,scientists,and supported suffers,scientists,anddoctors treatment! doctorsthathavebeensharingtheir thathavebeensharingtheir JenniferSchoonmakerI experiencesandscientificdata experiencesandscientificdatacollected. haveaninfectionthatis collected.Openyoureyesand Openyoureyesandearsandrealize verydifficulttotreatand earsandrealizepeopleare peoplearedyingonyourwatchand dyingonyourwatchand hastakenoverayearto gravelysuffering...ACTNOW...please... gravelysuffering...ACT find,firstpresentedasQ NOW...please... fever.Iamnotparanoid, amwelleducatedanddo JordanaPilmanis**Sorry,ImeantfalseNEGATIVES, notwishtobeinaLymewar,Icannotbegintotellyou notpositives.ThetestingreturnsfalseNEGATIVES. howIhavebeentreatedbythemajorityofthetwenty doctorsIhadtosiftthroughtofindsomeonetorunthe correcttesting.Ihavelostalmosteverythingoffiscal ShannonDevineLLMDsandothersriskingtheirlicense valueinmylife,thereneedstobesomerevisionof andreputationsandanythingelsetotreatus,youare theseLymeguidelinesandthespreadofinformation theheroes. needstobemoreefficient. StephanieSpicerPleaseacknowledgetheexistenceof ShannonDevineIwouldliketoseedoctorsallowedto chronicLymediseaseandmakeitlessthanimpossible treattheirpatientswithoutinterferencefromthose forustogetthemedicalhelpweneed.Provide withdifferentopinions.Iwouldliketoseecommon protectionfordoctorswhohelpus.Changeoutdated sense.AnyonewithLyme:pleasetryLiquidSamento. laws.Admiterror. Onlythingthathasworkedformeandmyteenager.I getnokickbacks,onlythehopethatatleast1person

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RandiBethEinzigIwasjustlookinginthemirrortoday feelinglikeIwashavingaseizure!IsaidoutloudIcant believeIhaventkilledmyselfIhavehadanelectrical headachefor5years!Ihavehadaheadacheforalmost 2,0000days!IhavebeeninfectedwithLymefor10 yearsandfoundoutlastyearafterseeing38Doctors andanexpenditureof$110,000. Ihavepaidoverhalfofthatandwasasinglemother juststartingmylife.Mydaughterusedtositinherfirst gradeclassroomandfearthatIwoulddiebecauseI couldnotstandupanymoreorgethertothefrontdoor ofherschool.Iwasoneofthetopgymnastsinthestate ofWisconsinandcompetedattheNationallevel.Iused torunmarathons.Iamamentalhealthprofessional andendedupcrawlingonmyofficefloorwithmy clientsbecausemyBPwassolow! ItiscriminalthatIliveintheUnitedStatesandhavehad toexperiencethiskindofagonyandtorture.IfIwerea dogIwouldbehavebeendiagnosedandwelllongago. Mywishisthatyouwouldbehonestwithyourselves abouttheneedsofhumanbeingsthatareill.Lookat thefacts.Therearehundredsofthousandsofusin searingpainManyarechildrenLookatyourchild tonightandimagineifsomethingsoviolentasLyme tookyourchildshealthfromthemLookatmybeautiful babyinthepicture.Itook14antibioticsadayto safeguardhimfromLyme,Babesia,andBartonella. Praisegodheishealthy!!Timetowakeupandstart caringaboutpeople!Lifeisaboutmorethanadhering todatedguidelinestogreaseyourplate...Whereare yourEthics?Withoutethics,youhavenothing! AmberHodgeAkerPleaserecognizetheseillnessesso thesepatientscangetthetreatmentstheyneedand deserve.IhavetwofriendswhosufferfromLyme DiseaseandtheytravelacrosstheUStryingtofind doctorswhocanandwilltreatthem. JulieHowardSeemsabitabsurdtoseethisquestion posedbyIDSAandperhapsevenmoreabsurdthatI wouldbothercommenting...butsittingidlybywouldn't beright,either,so...IDSA,thankyouforasking.Please acknowledgethesufferingofpeoplewithchronicLyme infections.Pleaseackowledgetheimprovementsand remissionofmanyduetoveryexpensiveandextensive treatmentbyonlyahandfulofcompassionate physicianswhoarewillingtotakeachance.Mayyou neverhavetoexperiencefirsthandthepainand sufferingofthisveryrealdisease.

TishHealyI'dliketoseeyouadmittheTRUTHabout chronicandrecurringLymedisease.Whydon'tyoutry workingwiththeLymeliteratephysicianstohelp peopleinsteadofdenyingthatsomanyaresick.We've lostjobs,homes,marriages,relationshipsfromthis nastydisease.Don'ttellusitdoesn'texist.Weliveit everyday!!! KellyMairsonTostopdenyingthatchronicLymeexists &lookforacuretohelpthemillionsofpeoplesuffering withthis.IncludeILADSguidelinesinyour recommendations&suggestdoctorsgothroughthe ILADStrainingprogramsotheycanproperlytreattheir patients. DebiCollinsPleasediagnoseandtreatmeandmy familyexactlylikeyouwoulddiagnoseandtreata memberofyourownfamily. StephanieSpicerWearetoomanyforyoutopushthis thingunderthecarpetanymore. DebLabarberaChronicLymeDiseaseDOESexist whetheryouwanttoadmititornot.Iamlivingand dyingproof.HowcanyoubesoclosedmindedNOTto educateyourselvesfurthertohelpthosewhoneedto bediagnosedandtreatedproperly?Childrenaredying. Youngadultsaredying.Adultsaredyingallbecauseof youbrushingourillnessoffassomethingthatdoesnot exist. Ifyouhadsomeoneinyourfamily,alovedone,afriend orifYOU,yourselfsufferedfromthisdiseaseIam confidentyouwouldlookatthisinacompletely differentlylight.TurnyourBRIGHTlightsonandopen youreyesandminds!!!!Thisisoneofthefastest growingdiseasesthatisdebilitatinglivesandtaking livesaway.Youshouldbeashamedofyouractions.I wastreatedin2004for6weeksbyanInfectious DiseaseDoctorwhoendedmytreatmentstatedIwas experiencingresidualeffectsofLymedisease.Overthe years,Ibecameincreasinglyill,seeingcountless specialistsandspendingthousandsofdollars.Allthe 'specialists'didwas'bandaidemypainand illness...comingupwith'other'diagnoses,butNEVER consideringitwasstillLymeinmysystemeventhoughI toldeverydoctormysuspicionthatitwas. Now....inlatestagechronicLymediseasethatwas PROPERLYdiagnosed,Ihavenochanceofbeingcured onlypossiblyremission.Iamonly48yearsold.Lookat whatYOURridiculousdecisionshavedonetous...Just

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look.Openyoureyesandminds.Thinkofothers.Think outsidetheboxabit.EDUCATEYOURSELF! KarieThulonKlimForyearsonendIwasreassuredmy symptomswere"nothing."Ifnowweknownothing meansLyme,thennothingissomethingand"nothing" trulycouldbeincludedonthemedicaldiagnostic decisiontree.Nothingnowhasnewmeaningofchronic andlatestagesignificance.Everyoneneedstoknow whatnothingreallymeansandgetproperrespect, attention,andtreatmentforit. TishHealyAresponsewouldalsobewelcomed! KimFinchSickforyears&Drs.testingformanythings BUTLyme.Oncechronicallyill,IhadgottenBellsPalsy andtestedpositiveforLyme.Onandoffantibioticsfor manyyears,itwastoolate&stolemylifeaway.Many ofusdon'thavethe$togoaboveandbeyondwhatthe insurancecompanieswon'tpayfor.Weneedresearch &resultsthatwillhelpus!Pleasereconsideryour guidelinesfortreatment! TishHealyHey,I'mcurious.Whenis"WorldLyme Day"?? SubLymeContenderhahatishthatswhatim screaming.....aresponsewouldbenice. StephanieVandagriffToredotheguidelinesonLyme Disease!Stopbeingclosedmindedandselfservingand helpourLymecommunity! SubLymeContendertheycouldstartbysayingthey weresorryforbeingmoreinterestedinmoneythanthe peoplethesworetoprotect...andthentheycould"get onthecommonsensewagon"withtherestofus....its notthathard.....itskindahardtobelievethatwerthe crazyones...idontknowhowtheysleepatnight...i wouldbeashamedofmyself LindaEricksonIamappalledatthelevelofmisery, physical,emotional,andspiritual,thatsomedoctors willsay"it'allinyourhead".Whereisyour compassion?Myferventwishisthatalldoctorswould listentoandtrusttheirpatients,andwouldbecome educatedaboutchronicLyme.Openyourmindsand yourhearts,PLEASE!!! SubLymeContenderanditsoundstometheyhave beeninfectedsincetheycantretainanynew knowledge....*currentresearch*

BenjaminMahoneyIama28yearoldmalewhohas losteverythingandlivesondisabilitybecauseofyour "guidelines"onLymeDisease.IwouldliketoseeYOUR societyadmitthetruthaboutLymeDisease. AlyssaKnappTheIDSAmustrevisititsLymedisease guidelines.ChronicLyme/PersistentLyme/LateStage Lyme...whateveryouchoosetocallitisveryrealandit exists.Itistimetostarttreatingpeoplewhoareveryill withaveryrealdisease.Longtermtreatmentworks....I amliving,walkingproof.Ithastaken41/2yearsof consistenttreatmentbutIamlivingmylifeagain.Ibeg ofyou...forallthepeopleIknowandlovewhoarenow suffering....please,changeyourtreatmentguidelines, findbettertestingandstarttreatingeveryonewiththe respect,kindnessanddignitytheydeserve. LysandraCookIwouldlikeyoutorevisityourstandon Lymedisease.Mylifewaschangedforthebetterwhen mydoctorfollowedtheILADSguidelinesratherthan yours.Ittookme5yearsandcountlessdoctorstogo frombeingnearlydisabledandonmanymedicationsto livingmylifeagain. WendyVogtIDSAshouldstandformorethanIDon't SeeAnything.Youarecurrentlyresponsibleforan uncheckedepidemicintheUS...dotherightthingand startbeingwhatyournamestandsforbetheexperts onadiseasethatisgrowingfasterthanAIDS.Startnow. SubLymeContenderdoesanyonegotthissavedincase theydeleteit? KimDeSantisGoodwinOurlivesarebeingtakenfrom usthisillnessisalivingnightmare.10drsandtoldMS, fibromyalgia,depression,painmanagementandthelist goeson.Gaveittomydaughterduringpregnancy.Iwas symptomfreefortwoyearsnobullseyerashandslow onsetofsymptoms.Therearesomanysymptomsthat arenotevenmentioned,coinfectionsnotmentioned. Healthcarenotcovered,Lymedrslosingtheirlicense whentheysavelives.peoplearedyingorwantingto diefromthis,losingalltheirmoneytryingtofindout whatswrongandnocoverage. Whatishappeningiscriminalandourlivesarebeing robbedandsomanypeopleknowthetruthandhideit. Fdahasenoughmoneypleasedontruinlivesfor money.Weneedfundingforacure,knowledgefor peoplewhoarestillundiagnosedwalkingaround thinkingtheyhavesomethingtheydonothave.The publicneedsthetruth,drsneedthetruthandwe

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canyoupeoplesleepatnight?Oh,that'sright.Iguess deserveitjustlikeifsomeonehascancertheyget treatment.Onemonthofantibioticsisacurefor thatyoucannotbewoundedwhenyou'vegotnoheart. chronicLymeyouhavegottobekiddingme. HallieRichwine@subLymecontenderscreenshotsof IfyouhadchronicLymeandwentthroughthishellyou allcommentsuntilminerightthissecond. wouldseehowfoolishandignorantthatisandmake youwonderwhatsecretsarebeingkept.Thepeoplein LauraDeCoste chargeoftheseguidelineshaveontheirshoulders justPLEASE...pleasehelpus. deaths,brokenfamilies,lost homesandunemployment, CathyTuttyIwouldloveto DebbieRay Youallneedtodropyour millionslostqualityoflife,kids seeIDSAreallyexamine stanceonLymeDiseaseandallthesilly losingtheirparentsasanactive autoimmuneandtick politicsinvolved.Ihavesufferedfor10 partoftheirlifeforever bornediseaseconnections. Iwouldloveevenmoreif changingfamilies.Imsoangryi yearsandmyInfectiousDiseasedoctor you wouldlookforsome lost6yearsofmylifebeing won'ttreatmewithIVantibiotics.I sickeverysingleday.Tryhaving protocolsandendorse continuetobesickandnooneseemsto theflufor6yearseverydayand sometreatmentforthose carethatIcan'ttakecareofmyselformy sufferingfromthese wanttokeepliving.Somehave livedwiththisalifetime.Our insidiousdiseases! sonallbecauseofthishorribledisease Lymedrsaresavingourlives yousaydoesn'texist!!!SHAMEONTHE andtheyhaveawarmplacein StephanieVandagriffGood IDSA!!!!! heavenwaitingforthem jobHallie! somedayforsavingus.educate anditsallproven.Helpdont StephanieVandagriffWe kill. shouldsendthislinktoallnewsstationstogainnational attention. LucretiaPerilliPleaseadmitthatmembersofyour nonprofitorganizationfalsifiedinformationabout ChrisKasperIwouldlikefortheidsatostoptryingto sweepLymediseaseunderthecarpet.Thereistoo accuratetestingforLymediseaseinordertofalsifythe muchsuffering. Lymevaccinetrialsoutcome(whichwasacomplete fiasco).Thishappenedyrsago,causingamassive LisaHiltonIwouldalsoliketoseesomeonestudythe dominoeffectyouputoutfalsifiedinformation, connectionsbetweenallthesenewmysteriousillnesses brainwashedthemedicalcommunityintobelievingit, thatarepoppingup.Isthereanystudiesbeingdoneto andsoon.Andnow,millionshavebeenmisdiagnosed, seewhatcausesfibro,chronicfatigue,ms,parkinsons, neverdiagnosed,nevergivenadequatetreatments, alzheimers,lupus?Sincenoneofthesehaveacausative nevertoldthetruth.Millionsareseverelyillandmany factor,couldtheconnectionsbeborrelia? havedied.Endless,needlesssufferingallduetothe extremelyquestionabledecisionsthatwereandare CoryBoydMysister'sbeensickwithLymediseasefor madebyyourprofessionalnonprofitorganization. overayear,andit'sruiningherlifeandhurtingmy family.Iwouldlovetoseeactualrecognitionofchronic PleasefinallyadmitthatlatestageLymediseaseexists, isfarmorecomplexthanaswollenknee/achyjoint Lymediseaseandanactualtreatment. disease(andisNOTpostLymesyndrome),involves virtuallyeverybodilysystemincludingthebrainand DebbieRayYouallneedtodropyourstanceonLyme CNS,andconsistsofrelatedbacterial,viral,fungal, Diseaseandallthesillypoliticsinvolved.Ihavesuffered mycoplasmal,prion,etc,infections,whichareseverely for10yearsandmyInfectiousDiseasedoctorwon't incapacitatingandworkinginconjunctionwithone treatmewithIVantibiotics.Icontinuetobesickandno anothersynergistically.YoucouldcallitHIVnegative oneseemstocarethatIcan'ttakecareofmyselformy sonallbecauseofthishorriblediseaseyousaydoesn't AIDS,whichyouknowitis. exist!!!SHAMEONTHEIDSA!!!!! Doyourealizejusthowmanylives,includingmine,that youhavepermanentlyRUINED?Thinkaboutthat.How

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sufferingcausedbytheignoranceofinfectiousdisease LisaHilton"Alltruthsareeasytounderstandoncethey doctorsisunbelievable. arediscovered;thepointistodiscoverthem."~Galileo AshleyOrdeckiYeah,SubLyme.Iscreenshotitall! StephanieKodakyaPhillipsitsabouttimeyougetreal aboutLyme. MadisonLewis@Tish:womenposted'LymeMonth' onthissite.Thepostwasdeleted,andthe2women LisaHiltonWhataboutmorestudiesonhowitis werenolongerabletocommentonthispage.Doesthis transmittedsincealmostnooneevenremembersatick. notspeakaworldofvolumesaboutthelackofintegrity Whataboutsexualtransmission?Bloodtransfusions? andthedegreesthis'SocietyofDrs'willgotoinorder childbirthwhichwealreadyknowbutdrsdontseem tosquelchtheveryexistenceoradvocatingthe to?Otherinsects? existenceofChronicLymeoranyoppositiontotheir lucrative'Guidelines'. ElaineFacteauWalkerHowcouldsomeonepossibly thinkthattheseinfections DonnaHarrisPruittLyme LucretiaPerilli Pleaseadmitthat diseaseisnolongerabout canbeeasytotreat?I'msure scienceorsickpeople.Itis you understanditbutyou membersofyournonprofitorganization aboutmoney,powerand needtoACKNOWLEDGEthe falsifiedinformationaboutaccurate greed.Yours,bigpharmas, factthatthisissuehasgotten testingforLymediseaseinordertofalsify verymessedupanditis insurancecompanies.Iwant toseeyouliveuptothe hurtingthousandsofpeople. theLymevaccinetrialsoutcome(which Stand upandmakesome HippocraticOathyoualltook wasacompletefiasco).Thishappened changesforthediagnosisand whenyoubecamedoctors, yrsago,causingamassivedominoeffect treatmentoftickborne andstopworryingabout youputoutfalsifiedinformation, diseases.Beabletolookat liningyourpockets. AcknowledgeLymeDiseasein brainwashedthemedicalcommunityinto yourselvesinthemirror. allofitsfforms,insteadof believingit,andsoon.Andnow,millions ignoringthesciencethatisin StephanieVandagriffI have been misdiagnosed, never frontofyoureyes,andifyou contactedcnnandsentalink diagnosed,nevergivenadequate areunwillingtotreatus,let tothis.Everybody,sendalink thefewdoctorswhoare treatments,nevertoldthetruth.Millions toothernewsstations!We willingtotreatus,todotheir needtogetstationstocover areseverelyillandmanyhavedied. this! jobsnadstoppersecuting Endless,needlesssufferingalldueto them,andultimatelykilling us.Andifyoucan'tdothat,I theextremelyquestionabledecisionsthat LisaHiltontoAnnMarie reallybelievethattheIDSA O'Shaughnessy,youcould wereandaremadebyyourprofessional shouldbeabolished,as includethisinyourprojectto nonprofitorganization.... shouldmost,ifnotall,state AndersonCooper. medicalsocieties,untilthey arewillingtogobackto GailShefferPleaserework ....Doyourealizejusthowmanylives, scienceandpatients'best thelatestguidelinesandquit includingmine,thatyouhave interests.Thoughthispost cherrypickingthemedical permanently RUINED? Think about that. willprobablybedeleted,at literaturethatbacksupyour Howcanyoupeoplesleepatnight?Oh, leastIhavegottenabrief oldoutdatedguidelines.Iam chancewtospeakmypeace. notheretobashIDSA,but that'sright.Iguessthatyoucannotbe Dotherightthing! manohdays,yourguidelines woundedwhenyou'vegotnoheart. areNOTWORKING!!!What RobinGunnIwouldliketheIDSAtosetasideegos, wouldyoudoifyourchildrenorspousesgotsickwith politics,conflictsofinterestanddotherightthing. Lymeorsomeothertickbornediseaseandeverytime Throwoutthe2006Lymeguidelines.Getanewpanel youstoppedtreatingthemwithantibioticstheygotsick ofdoctorsdoctorsthattreatLymediseaseandrewrite again??Youwouldtryitagainandtreatthemlonger wouldn'tyou?YESOFCOURSE....youwould.Andthey proper,ethicalguidelinesbasedonreality.Theneedless wouldgetbetter,asmanyofushave!!!!

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interestsinpatents,sitsonanInsuranceBoard,orhas SharChristensenTheIDSAmustreviseitsLymedisease ANYconflictofinterestwhatsoever,andreplacedwith guidelines.ChronicLyme/PersistentLyme/LateStage physicianswhowilllistenandworkwiththephysicians Lyme...whateveryouchoosetocallitisveryreal.Itis whoareonthefrontlineoftreatingthishideous timetostarttreatingpeoplewhoareveryillwithavery diseasetoestablishaHUMANEstandardofcare. realdisease.Longtermtreatmentworks.Thereare However,Iliveintherealworld,soattheveryleast,to thousandsofLymepatientswhowouldliketoshare allowphysicianssomeleniencyintreatingastheyseefit theirstory.Theyhavemoreknowledgeaboutthis withoutfearofawitchhuntresultinginlicense diseasethanIDSAcanimaginebecauseofnecessity. suspensionsandremoval.Peoplearedying,losingtheir Findthecause,findthecarriers,findacure.Please. homesandfamilies,theirhopetoliveanormallifedue totheravagesofthesediseasestotheirbodiesandsoul YvonneForeyIwouldliketostopbeingconfusedand becausetheguidelinesandtestingareinsufficient. sleepless....AMintheUKandwouldloveyoutojusttry onemonthofjustonetinysymptomofLyme TerriSchliesserWhatwouldI"toseefromMY disease..Insomnia!butmaybeyoudoandthatswhy society???MYsociety?Howaudaciouscanyoupeople youIDSAcantfigureoutwhatthehellisgoingon..like be?Getarealjob.SomethingyouknowSOMETHING mostofuscant..butthankyouforyouquestion,atleast about! itsgivenmehereintheUKsomethingtodowhile worryinghowIamgoingtohelpallmychildrenand grandchildrenwhonow HallieRichwineScreenshots sufferbecauseIdidntknowI untilhere.(Sorry,threadis MarilynnWoodcock Aphotographwas hadLyme,howIamgoingto movingquicklyandIneeda taken of Lyme bacteria in my blood after I savemyhomeIhavelivedin goodwaytoseethe hadbeenonantibioticsfor3years,yet sinceIwere6yrsold...now break...andIneedtoget duetofundingALLmyown somesleep!) youclaimthat'snotpossible.Notonly andtheirtreatmentIcanno shouldtheIDSAupdateitsguidelinesto longerafford..their CorinnaLymeLehmani reflecttheTRUTHabouttheexistenceof repossessingmy wouldlikefortheIDSAnazi's chronic Lyme, the CDC should also update home.....givenhourstolive tostoplaughingatmeduring onmanyoccasionsbutGod every ERvisit.i'lltellyou itsdiagnosticcriteria.Shameonallof mustofknownmykids again... itsnotHIV,itsnot you.Ifeelsorryforyourpatients. wouldneedme...butdoyou lupus,itsnotcrohnsor feelanyguilt,atall?noI hepatitis,itISlatestage Lyme.yesiAM"oneofthose"asihavebeentold.this didntthinkso...Iwasbittenontopofalreadyhaving isntacryforattention,itsacrytogetmylifeback,my it..sortofthankfulormyfamilywouldneverofknown whytheirliveswerefallingapart..agesfromnot2yrs sonslifeback,mymomslifeback,mycousinslife oldyettomy30yroldson...traveledthousandsof back,myauntslifebackandthelivesbackforallmy milesovertheyearslookingforhelp...tonoavailas Lymefriends.wedeservetoliveandgetfair fundwouldn'tallowmetocarryontreating...doifeel treatment...dontwe?loveandblessingstoall. sorryformyself..NO..IfeelsorryforyoubecauseGod see'sallandifyoudontanswerforitnow,markmy CorinnaLymeLehmanbytheway,mysonhasa wordsyouwill...AmIangry..notbecauseangeronly congenitalcaseofLymediseaseandbartonella...itis hurtsusandnotyou...butthankyouforgivingmethe VERYrealeverydayforthepastseveralyearsforhim. opportunitytorantatnowam,whilelayinghere peopleneedtobeeducatedaboutthetruth. sufferingphysicallyandmentally..ifLymedoesn'tkill me/us..worrywill..INTHENAMEOFGODWAKEUP! CrystalDesertDiamondCarterTheguidelineshave Hitlerhadnothingontheignoranceofyou ruinedmylife.Iam23yearsoldandIhavebeensick guys..money,arrogance,ego...toallthosewehavelost foryearsandIcouldnotfind1doctorinArizonato duetoyourignorance..maytheyRIP treatmesoIhadtomovebackacrossthecountryto livewithfamilybecauseIamtoosicktomaintaina fulltimejob.IamlosingmystatehealthcarebecauseI DonnaBaezBrunnerToseeallmembersofany amworkingparttimetopayformybills.Now,Iwillbe Committee,especiallyLymeDiseaseandit'stoomany withouthealthcareandIcontinuetogetsickbythe tonamecoinfections,removed,whohasanyfinancial

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DAY.ItNEVERhadtocometothisnever!Ishouldof beentreatedappropriatelymorethanayearandahalf agoIwouldn'tbesosick,Iwouldn'tofhadtoquitthe jobIlovedsomuch,Iwouldn'thavelostmy independence.TheLordwillnotallowtheseguidelines tostayinplacemuchlonger,Hewilldeliverusfromthis evilAmen! JotNirinjanKaurIwouldliketoseetheLymeepidemic recognizedforwhatitis.IwouldliketoseePROPER, EFFECTIVEtreatmentinalignmentwithILADS.Iwould liketoseeChronicLymeofficiallyrecognized.Iwould liketoseethecountlessnumbersofindividuals sufferingfromundiagnosedLymediseaseasaDIRECT RESULTofmisinformationfromIDSAtostop. Atage13,after9weeksofillnessandoneweekinthe hospitalwith9differentspecialiststendingtome,thank GodtheinfectiousdiseasesspecialistorderedaLyme test,thoughIhadnoneofthe"typical"symptoms.After thetwoweekroundofdoxycyclineIwasdeemedcured, thoughforthenineyearssinceI'vehadseveredigestive problemsthatcompletelyrulemylifeandhavecaused meuntoldamountsofpainandsuffering. It'sonlyfromtalkingtoanotherLymesuffererwho introducedmetoUnderOurSkinthatIhadthe confirmationIhadsuspectedthatitisNOTa coincidencethatmydigestionhasneverbeenthesame sinceIgotLymes.OnlyNOWamIfinallystartingtoget somerelieffromthedamagedwreckedbyinsufficiently treatedLyme.Ifmyfirstdoctorhadknownmoreabout ALLthesymptomsofLyme,itneverwouldhavegotten tothis.IfallthedoctorsthatIhaveseensinceIwas diagnosedhadbeenproperlyinformedaboutthe TRUTHaboutLyme,Imight'vegottenthehelpIneeded whenIconnectedthedotsforthembysaying"I'vehad theseproblemseversinceIhadLymedisease".InsteadI gotablankstare,becauseforthem,Lymedoesnotexist inTexas,itisnotchronic,itdoesnothavethatwidea rangeofsymptoms.BecauseYOUtoldthemso.Please, thisyear,tellthemthetruth. MarilynnWoodcockAphotographwastakenofLyme bacteriainmybloodafterIhadbeenonantibioticsfor3 years,yetyouclaimthat'snotpossible.Notonlyshould theIDSAupdateitsguidelinestoreflecttheTRUTH abouttheexistenceofchronicLyme,theCDCshould alsoupdateitsdiagnosticcriteria.Shameonallofyou.I feelsorryforyourpatients. KimDeSantisGoodwinThishasbeenfoundinsperm manyhusbandsandwivesbothhaveitsuchmycase

whichibelieveishowigotit,transmittedthrough pregnancyasigavemypreciousdaughter,breastmilk, bloodtransfusion,rawmeat,rawmilk,otherinsects andimsuremanymoreways.Iftheelisatestworked thanmyhusbandwouldhavebeentreatedandinormy daughterwouldhavebeensick. WeallknowLymewaschangedfromascientistfrom worldwar2intothiscomplexillnessthattricksthe immunesystem,bloodtestsandnotkilledbyantibiotics easilyatall.Inatesttubeitisnotbeingkilledin30days howwoulditdiewhenitchangesinto3formsplus biofilm.AllthecoinfectionsareworsethenLymeitself andthatdoesntgetmentioned.Youguysarenobetter thansomeonewhohasmurderedandtorturedpeople. Ittookmeayearofresearchandtalkingtopeoplewith Lymetolearnsomuch.Whatdoyoudotalktothefda andcdcaboutbonusforkeepingthesecrettokeepus sicksoeveryonemakesmoremoney.Letpeoplethink theyhavemssotheycanbeontheseexpensivemeds foreversamegoeswiththedozensofotherfalse diagnosis.Sadallthepeoplethatareinvolvedwith murder.TwopeopleontheLymesupportsitesdiedthis weekfromLymedisease.Oneofwhichonlyhad4 monthsofdoxy.Watchingthekidssuffertheirparents sickandnobodyabletoproperlyhelpanyone. LisaHilton http://www.samento.com.ec/sciencelib/Lyme/recovery ofLyme.html RecoveryofLymeSpirochetesbyPCRinsemensamples ofpreviouslydiagnosedLymediseasepatients www.samento.com.ec PresentedbyDr.GregoryBach,attheInternational ScientificConferenceon...SeeMore TeriSaahAyoubLabCorppositivein2002itstilltook myhusbandandIoneyearofgoingfromdoctodoc untilwefoundaLLMDwhosavedmylife.Duringthat yearthecoinfectionscomplicatedthings,alongwith thediseasecrossingthebrainbarrier,resultingin4 yearsofpicclines. LisaHiltonWhyareallthesestudiesbeingignored? TheCaseForChronicInfection: EvidentialpersistenceofBorreliaspeciespostantibiotic exposureinvivoandinvitro http://www.Lymekick.com/chronicLyme.pdf NewclassofTollLikereceptorligandscapableof enhancingautoimmunity

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http://www.ncbi.nlm.nih.gov/pubmed/ LongTermAntibioticTherapyImprovesPersistent Symptom http://www.ilads.org/files/publications_stricker__.pdf ResearchShowingTransmissionofOtherThanTicks DetectiontheinfectionwithBabesiaspp.Cytauxzoon felisandHaemobaronellafelisinstraycatsinMosul http://www.vetmedmosul.org/ijvs/media/confe.pdf TicksandmosquitoesasvectorsofBorreliaburgdorferi http://www.ncbi.nlm.nih.gov/pubmed/ordinalpos=&ito ol=EntrezSystem.PEntrez.Pubmed.Pubmed_ResultsPane l.Pubmed_RVDocSum RecoveryOfLymeSpirochetesByPCRInSemen SamplesOfPreviouslyDiagnosedLymeDiseasePatients http://www.samento.com.ec/sciencelib/Lyme/recovery ofLyme.html AdherenceofBorreliaburgdorferitotheproteoglycan decorin http://iai.asm.org/cgi/content/abstract///?ijkey=dbbba debeccbcefdc&keytype=tf_ipsecsha RickettsialResearchFightingtheBitesofFleas,Lice, MitesandTicks http://science.dodlive.mil////rickettsialresearch %E%%fightingthebitesoffleaslicemitesandticks/ LymeandPsychiatricIssues: DistinctPatternofcognitiveImpairmentnotedinLyme Patients http://www.angelfire.com/biz/romarkaraoke/Lymetim. html IladsPsychiatricBrochure: http://www.ilads.org/Lyme_disease/Psychiatric_Brochu re__.pdf TheRoleofNeuropsychologyTestingLymeInChildren http://www.Lymeinfo.net/SheaLeventhal.pdf TheNeuropsychiatricAssessmentofLymeDisease http://www.mentalhealthandillness.com/tnaold.html ReferencesforPsychiatryandLyme/TickBorne Diseases http://www.Lymeinfo.net/psychbiblio.html TheHumanSideOfLyme http://www.thehumansideofLyme.net/

LymeDisease,ComorbidTickBorneDiseases,and NeuropsychiatricDisorders: http://www.psychiatrictimes.com/display/article// UnderstandingThePuzzleOfChronicLyme http://www.cumc.columbia.edu/publications/in vivo/Vol_Iss_aug_/index.html CanLymeCausePsychiatricDisorders? http://pn.psychiatryonline.org/content///.full DiseasesOfTheMind http://www.thedailybeast.com/newsweek////diseases ofthemind.html SpinalFluidandBrainTests http://www.columbia Lyme.org/patients/ld_spinal_fluid.html LymeAsRelatedToOtherDiseases LymeandAutism http://www.ilads.org/Lyme_research/Lyme_articles.ht ml MultipleSclerosisandLymeDisease http://www.direct ms.org/pdf/CausalSpecific/MS_LymeDisease.pdf DistinctCerebrospinalFluidProteomesDifferentiate PostTreatmentLymeDiseasefromChronicFatigue Syndrome http://www.columbia Lyme.org/research/featured_research.html http://www.aldf.com/Best_advice_about_Lyme_diseas e.shtml ACriticalAppraisalofChronicLymeDisease: http://www.nejm.org/doi/full/./NEJMra Lymerix DidLymerixCauseNeurologicalImpairmentin Recipients? http://pn.psychiatryonline.org/content///.full GeneralLymeArticles AmyTanLymeDisease http://www.igenex.com/tickedoff.htm ADiseaseInDisguise http://www.thedailybeast.com/newsweek////a diseaseindisguise.html

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TreatmentOfLymeDisease http://www.columbia Lyme.org/patients/ld_treatment.html LymeDiseaseandPsychiatricDisorder http://juno.cumc.columbia.edu/psjournal/archive/archi ves/jour_vn_.html SpirocheteAdhesinDbpAInfluencesSpirochetalBinding toDecorin http://iai.asm.org/cgi/content/abstract/// AnalysisofthedbpBAUpstreamRegulatoryRegion ControlledbyRpoSinBorreliaburgdorferi http://jb.asm.org/cgi/content/abstract/// GeneralLymeResearch: RickettsialResearchFightingtheBitesofFleas,Lice, MitesandTicks http://science.dodlive.mil////rickettsialresearch %E%%fightingthebitesoffleaslicemitesandticks/ SpirocheteAdhesinDbpAInfluencesSpirochetalBinding toDecorin http://iai.asm.org/cgi/content/abstract/// Clinicaleffectsoffluconazoleinpatientswith neuroborreliosis http://www.ncbi.nlm.nih.gov/pubmed?term=Eur+J+Me d+Res.++Jul+%B%%%A CompoundingforLymedisease http://www.modernmedicine.com/modernmedicine/Co mmunity+Practice/CompoundingforLyme disease/ArticleStandard/Article/detail/?contextCategor yId= PeerReviewedArticles: CarbamazepineintheTreatmentofLymeDisease InducedHyperacusis http://neuro.psychiatryonline.org/cgi/content/full/// FunctionalBrainImagingandNeuropsychological TestinginLymeDisease http://home.pon.net/caat/Lyme/brainimaging.pdf HigherPrevalenceofAntibodiestoBorreliaBurgdorferi inPsychiatricPatientsThaninHealthySubjects http://ajp.psychiatryonline.org/cgi/content/abstract/// ?ijkey=cfbcedfbbaeff&keytype=tf_ipsecsha LateStageNeuropychiatricLymeBorreliosisDifferential DiagnosisandTreatment http://www.wadhurst.demon.co.uk/Lyme/Lyme.htm

LymeDiseaseANeuropsychiatricIllness http://www.angelfire.com/biz/romarkaraoke/Lymeart.h tml MusicalHallucinationsInPatientsWithLymeDisease http://www.highbeam.com/doc/G.html RegionalCerebralBloodFlowandCognitiveDeficitsin ChronicLymeDisease http://neuro.psychiatryonline.org/cgi/content/full/// Seasonalcorrelationofsporadicschizophreniato IxodesticksandLymeborreliosis http://www.ijhealthgeographics.com/content/// TheUnderdiagnosisofLymeinAdultsandChildren http://flash.Lymenet.org/ubb/Forum/HTML/.html MoreIDSAandotherLymeRelatedInfo http://www.actionLyme.org/index.htm TeriSaahAyoubIwon'tboreyouwiththedetailsof whatsomeofthedocsputmyhusbandandmethrough assomeofthemarejusttoohumiliatingtopost!We thankGodeverydaythatwefoundthemostincredible LLMDwhohashelpedmeputmylifebacktogether piecesatatime.IwishistoseemoreLLMDdocsteach protocoltoIM'sandID'smaybejustmaybetheywill seethepositiveresultsthemselvesandstarttobe unabletoturntheotherway. SheriSouchIwanttheTRUTH.ScrapyourLyme guidelinesandstartover.TherearetoomanyChronic Lymesufferers(manyofwhomhavebeencuredwith longtermantibiotictreatmentmyself,forexample) foryoutoignore.Youarenotonlycausingsufferingin yourowncountry,yourfaultyguidelinesarecausing painandsufferinghere,inCanadatoo.Enoughis enough. MattHalterIDSAguidelinesareanimpedimentto treatment.EightyearsofIDSAdocs,thousandsof dollarswastedonuselesstestsandspecialists,leaving mewithawifewhobecamesickerandsicker.Theirbest diagnosis"depression".Theonlythingtoreversethe sufferinglongtermIVantibiotictreatmentfor NeurocognitiveLyme.18monthsandcounting.Butwe hadtosearchlongandhardtofindadocwillingto managetheIVtreatment.Toomuchpersecutionfrom InsurancecompaniesusingIDSAguidelinesasaweapon toshutthemdown.OPENYOUREYESTOTHETRUTH. ComeandvisittheLymesupportgroupsinthesouth centralandsoutheasternpartsofPa.Wecanintroduce

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youtomanyreallifeexamplesofwhatyouclaim doesn'texist. LynnOlsonTumaIwanttheIDSAtostopthesenseless andcompletelyunnecessarysufferingthattheirawful& notbasedonrealityguidelineshavecausedtosomany Lymesufferers,theirfamilies&theirLymeliterate doctors.IalsowantallmembersoftheIDSAthathave perpetratedthissufferingtoberelievedofthedutiesas aphysicianfortheyhavenotupheldtheHippocratic Oath. StephaniePateIwantmylifeback.Yourincorrect guidelinesonLymetreatmenthasmisguideddoctors acrosstheUSandhasthusstolen7+yearsofmylife. NowIamhavingtowatchmysmallchildrensufferwith Lymethattheycontractedinutero.Yourguidelinesare makingithardformybabiestogetpropertreatment.I wantLymediseasetobeseenforthelife altering/damagingdiseasethatitis. MichellePerryNotmuchmoreIcansaytoaddtowhat everyoneelsehas.Ijustwantmylifebackandits unfortunateourfutureliesinyourignorance.Please changetheseguidelinesforCHRONICLymeDisease.I havemissedsomuchofmydaughtersfirst8years becauseofbeingdisabled...misdiagnosedforsomany yearsbecausedoctorsareusingyourterribleguidelines todiagnoseandtreatpatients.Ifyoudidn'tsaythiswas suchaneasilycureddiseasemaybewewouldhave somerealresearchdoneandacure.Ormaybeyouhave onethatyouarenotsharingbecauseyourmakingso muchmoneyoffofoursuffering!!!!!!!!!!!!!! ShellyScottDontuknowtheycantchangethe guidelinesthefalloutwouldbemuchtoogreat.What happenswhensomeoneadmitstheywerewrongand manypplsufferedanddiedasaresult?Uguessedit! Thatswhytheguidelinesstandastheyare. KennethMercureRevisetheIDSALymeGuidelines!! BecauseoftheseguidelinesIwentundiagnosedfor nearlyseventeenyears,fiveofwhichwasspentbeing rejectedbydoctorsandmisdiagnosed.Thishascaused manycomplicationsandismakingthehealingprocess moredifficult.Evennowitisextremelyhardtofind anyoneinthemainstreammedicalcommunitywho believesinmydiagnosis. AssoonasdoctorsseemymedicalrecordIamtreated differentlyorevenworsehumiliated.Evenwithso muchevidencerightinfrontofthem,manyofthe

doctorsIstillmustsee(duetolocation)completely ignoremyLymediagnosis.It'sliketalkingtoabrickwall mostofthetime. Financially,Ihavealsobeenputintoapositionwhere it'seithertravelacrossthestatetogethelpordon'tget better. IntermsofinsurancecoverageIamextremelylimitedin mychoiceofdoctors. BecauseoftheIDSA'sinfluenceoverinsurance companies,myantibioticsarebarelycoveredandmust befoughtfortoothandnailuponeachrefill.Ifear everydayhowIamgoingtobeabletoaffordmy medications,asthebettertheyget,themoreexpensive theyget.Thisisaveryimportantissuetomebecause myinsurancewilllikelynotcoverthesemedicationsand Iamnotrich.Icanonlyaffordtopayforsomuch.This doesn'tevenincludethemultitudeofvitamin supplementsIamprescribedtotake. Mystruggleisbynomeansauniqueoneeither.This experienceisuniversaltonearlyallLymepatients. Unlikemanyotherillnesseswemustfighttoprovewe aresickbecausewesufferfromaninvisibledisease. Thisleadstoquestionsanddisbelieffromdoctorsand evenlovedones. Nopersondeservestobetreatedlikethis,whether theyarechronicallyillornot.Stoptheconflictsof interest,puttogetheranunbiasedguidelinespanelwith nofinancialincentivestiedtotheiropinionsandhelpto getpeoplehealthyagain,nottolineyourownpockets!! CarolynFoxWhynotconsultwiththeexperts,Lyme DoctorsfromILADS,whohavebeensuccessfully treatingthesecomplicatedcasesthatothersdismiss.It took20yrstofinallygetaproperdiagnosis,despite multipleWesternblotsandElisatests.Theseare horriblyunreliableandyourguidelinesmakeiteven moredifficulttogetanaccuratediagnosisandmostdr's areunawarehowbadtheyare.Afterbeingdeemedthe healthiestsickpersonataperipheralneuropathycenter inNYCandsentonmyway,I'msogladIdidn'tgiveup onfindingadiagnosis(es)ortheLyme,andcoinfections wouldhavekilledme.Nowatthepeakof PamRitzenthalerI'dlike'mysociety'toREADallofthe LymeDiseasestudiesnotjustthosestudieswrittenby IDSAmembers.I'dlikeIDSAtoengageinSCIENCEwhere scientistslearnfromeachotheranduseeachothers'

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notbeingproperlydiagnosed,andaredoomedtosuffer studiestobuildonthebodyofscientificknowledge slowCNSdamageandnothaveaproductive ratherthantoteardownopposingviews.Scienceis life...updatetheguidelinesnowplease!! supposedtobeaconversationnotcombatandnot protectionofanyoneviewpoint/profitcenter.I'dlike AlisaGremoreJustbecausesomethingcanbeveryhard IDSAtoturnjustascriticalaneyeonLymestudies totreatandcanbeveryconfusingandexpensivedoes conductedbyIDSAmembersasitdoesonstudiesby notgiveusalicensetosayitdoesnotexist.Icouldnot ILADSmembers.I'dlike'mysociety'tounderstandthat betoldIdidnothaveLymediseasebecauseIhad LymeDiseaseiscomplexandthatitmanifests multipleem's.ThisDr.walkedorpacedthefloorinhis differentlyineachpatientandthatit,inmanycases, officeplayingwithhishair.WHYwasthisDr.soscared doesNOTdiewith26weeksofantibiotics.Tosaythat andnervous???WhytheLIES??Andfurthermore,tobe theIDSAguidelinesaresufficientistoignorethe onthesafesidedonottellpeopleanytickisharmless, experienceoftensofthousandsofpatientswhodidnot thedogtickMIGHTNOTbeharmlessandwhenyou getclearoftheirborreliainfectionafterIDSAstandard havepeople,verysickpeoplewithIV'spumpingintheir treatment. veinsalllinedupinarowHIDEthemwhensomeone comesintoaCDClookingfor ShariBlanchardIwould Carolyn Fox My career, I am unable to help.Itwaskindahardforeven liketheguidelinesforLyme workandliveanormallife.Andwhat mynaiveselftobelievethis Diseaserevised.If'Lyme'is cliniciansayitwasnotinMIyet notresponsibleforthe aboutallofthechildrenthatarenot withthatlittlerowofsickiesin continuingsymptomsafter beingproperlydiagnosed,andare sight,atleastdrawacurtain. theinitialLymeinfection, doomed to suffer slow CNS damage and AndifIhavethenameofthe thenwhataresomany nothaveaproductivelife...updatethe stateplaceIwenttowrong peoplesickwith?Lymeis don'tblamemesweetieblame growingfasterthanAIDS guidelinesnowplease!! thetick!!!!!!!!!!!!!!!!!!!!!!!!!!! andWestNilecombined Stopthelying,apresidentof andformanythe theU.S.hadsomeformofborreliaforGod'ssakeand symptomscontinueon.Thoseofusdealingwith helivesinanonendemicstate. ongoinghealthproblemsafterpresentingabullseye rashcannotevengetappropriatemedicalhelp.Wewill MicheleLottThequestionposedheresimplyadds notstopapplyingpressuretotheIDSAuntilwegetthe medicalhelpweneed. insulttoinjury:OURsociety???Whoareyoufooling??? Yourselves,ofcourse,onceagain.Itisutterlyshameful DebbieRayThankyouLisaHiltonforallthegreatlinks. howmuchignoranceandlackofcompassiontheIDSA hasconsistentlyshowninregardstoresearchandthe JasonCatlettWow,YouwouldthinktheIDSAwoulddo terriblemiseryofLymediseasepatients.Iamamember somethingaboutthis.Idon'thaveLymeDisease,but ofseveralsupportgroups,somemembersofwhich havealsohadcancer.INTHEIREXPERIENCE,LYME mygirlfriendhasLyme.Shehashaditforovermany DISEASEHASBEENMUCHWORSE,BOTHTOTREAT+TO LONGyearsnow.Andeverydayout(store,mall,ext...)I LIVEWITH,THANCANCER.Shameonyou,IDSA,for meetpeoplewhohaveLYME.Allthesepeopleallover obfuscatingthetruth,clingingtoyouregos,condoning theworldarecomplainingaboutthesamethingbut badscience,andliningyourpocketswithmoneymade Lymedoesn'texist.Soundslikeallmembersoftheso fromkeepingpeopleseverely,andsometimesfatally,ill. calledIDSA,shouldadmittheyhavenofreakingclueon whattheredoingortalkingabout,andquite.Getnew NicoleGallagherDotherightthingforLymepatients!I peopleinthatwouldhaveanOPENMIND,insteadof amoneof6inthesamehouseholdwhogotLyme,4 beingonesided.ItmustbeaDoctorsthing.Youall fromtickexposure,2congenitally.11yearslater, suck..... despitefightingforourlives,wearenotallwellyet.We needhonestscienceandmedicalsupporttofightthis YvonneForeyAmemberoftheIDSAhimselfspeaksthe multifacetedinvasivediseaseandit'scousins.Dothe TRUTH..yetyouignoreoneofyourown? rightthingandeducatethemedicalcommunitiesofthis http://www.youtube.com/watch?v=VlHDATM CarolynFoxMycareer,Iamunabletoworkandlivea countrytodetectandproperlytreatthisdisease. normallife.Andwhataboutallofthechildrenthatare

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LilyBayrockHiguys, I'mafraidwemightendupgoingdowntheroadwe sometimesstumbledownandloseourclout...Let'stry toanswertheIDSA'squestionherewithoutgoingtoo muchintoourownpersonalstoriesandfrustrations.I knowit'shardtodo,butourpowerhereisinour numbersandourclarityofmessage,andwedon'twant anyonetobeabletomarginalizeusanymore.Let'sstay calmandrationalandcontinuetolettheIDSAknow thatwhatwewouldlikemostfromthemisforthemto revisetheirdiagnosticandtreatmentguidelinesfor LymetoincludechronicLymeasadiseaseandlong termtreatmentasaviableoption,andfortreatmentto bemorereadilyavailableandmorepatientfriendly. Thiswillhappenwiththehelpofrecognitionfromthe IDSAandwiththeirsupportagainstinsurance companiesrefusingtreatmentcoverageandfordoctors beingallowedthefreedomtotreatastheyseefit. Didyougetthat,IDSA?Thanksforaskingforourinput. Wewouldgreatlyappreciateakindearfromyou,and foryoutogiveanewfocustoLymeandChronicLyme throughanunbiasedandopenmindedinterchange withchronicLymesufferersandLymeliteratedoctors, andwelookforwardtoworkingtogetherbetterinthe future.Wecan'tlosesightofthefactthatweallsharea commongoal:toendsufferingthroughdiagnosisand treatmentofinfectiousdiseases,andwe,chronicLyme patients,wouldlikenothingmorethantoextendthe IDSA'sknowledgeandtreatmentbasetoincludethis diseasewhichcontinuestobeunderdiagnosedand undertreated. HappyNewYear! LilyBayrock CindyJeaneHowaboutchangingthewayLymedisease istested?Iwastoldfor15yrsthatmyLymetestswere negative,thatiDIDNThaveLymediseaserepeatedly..it wasonlywheniwenttoaLLMDthatmytestfinally camebackpositive.Howisonetoknowthatanormal everydaylabstestingissoveryinnacurate?....the medicalcommunityshouldbeashamedofhowlittle theyknowaboutthisdisease...pathetic! ToddM.CoutureSeeingmyveryclosedearfriendof minedealwiththeyearsofagonizingpainbecauseof herLymetheyneedtochangetheguidelinesbecause moreandmorepeoplearecontractingitandlivingthru thepainanddisease.

KeriEllingtonAragonaddmetothelistofpeoplewho wantthetruth,realscience,helpgettingwell,andmy lifeback.BecauseofyourguidelinesIwastedayearof mylifeandtonsof$$seeingover20doctorsfrom everyspecialtyonlytobeyelledat,ignored,andoffered someseriouslyscarydrugs.Iwasasecondgrade teacher,butIlostmyjobbecauseIcouldfindadoctor tohelpme.Whatasadworldtheseguidelineshave created.Pleasethinkaboutthepeopleanddowhatyou knowinyourheartisright.We'redyingouthereand youcanchangethat. LoriJohnstonAguileraThatdoctorswouldbe committedtoresearchandtreatthisdisease,asthey wouldanyother,becausetheywanttocurepeople, andstandagainstthepoliticsthatmakesitdifficultto dotheirjob. AnneGoudeMearsWriteguidelinesbasedonreal evidence,notexpertopinionthatlimitschoices. YvonneForeyIagreeLilybutnoinsuranceinthe UK...nodoctors,noempathywhatsoever..wehad3 doctorsallbeensquattedbythepowersthat be....peoplehavebeensectionedforspeakingupover heretoo...ongoogleforalltosee,tillproventhelady didhaveLymeofcourse...itshardnottorantasIam sureyouunderstand.Butyesweshouldtry...toenable ustogetthecareweneedweneedtobewellenough toflytotheUSAorwherevertheLLMD's are..impossibleformyselfandmanyothers...gut wrenchingtowatchmynotyettwoyroldgrandson screaminginpain,nottomentionmanyofmy family...butyes..letshopeandpraythisisouryearfor allinthisthreadandbeyondssake... PatMcDonaldJustlookatthis!!!It'scriminal!!That's whatyouareandwillcontinuetobeifyoukeep ignoring.....IfitwasyourChild...spouse...Motherof Fatheryouwouldtreatthem..NOTbyyourguidelinesI amsure.!!!!! SueAldousToomanysufferbecauseofyourflawed guidelines.Theeconomywouldbemuchbetterifthe sickgotwellenoughtowork.Focusonthecurebut untillyoufigureitoutletusbetreatedwithdignityand whatmedsweneed. MabelQuinonesIwouldlikeforthehypocraticoathto includetheLymecommunity.Iwanttheliestostop. Thetruthwillprevail,italwaysdoes.Whatsidewillyou beonIDSA?IhavechronicLyme,mydaughterhasit,&

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nowmyhusband.Motherscanpassittotheirunborn babies,&itcanbesexuallytransmitted.Peoplehave becomeillfromdonatedblood...howmanymorewill youallowtosuffer,&forhowlong? JacqiEulerIgaveittomyson,andnowmyhusbandas well.Whenwillthismadnessstop? MelissaMuthigHotmerPleasehelpusfightLyme disease.Helpthosegetproperlytested.Thisisso gettingoutofhandandneedstobestopped.Mylife hasbeenturnedupsidedownbecauseofit.PLEASE HELPUS!!! CindyBennettStoesserIwouldlikeyoutoSTOP ignoringlatestagechronicLYMEdisease!Ihadatick bite40yearsagoanddidn'tgetantibioticsforituntil2 yearsago!NowIwillbeonthemforYEARS,probably offandonfortherestofmyife.MyInsurancewillnot payforthemnowbecauseYOUdon'tbelieveIhave Lyme!Youshouldbeashamed.IhopeandPraythat knowoneclosetoyoueverisstrickenwiththisdisease. Nooneshouldknowthispainandsuffering.Myfamily issickbecauseIwasnotdiagnoisedintime.IbelieveI havelostfamilymemberstoLymethatweretoldthey hadotherdiseasesbecauseofyourignoranceThishas tostopYoucanmakeitstop.Changeyourwaysand makethingsright.Stopthesuffering.Saveus. MollyPerryHelpthosethataresufferingwithLyme DiseaseandOthertickBorneillnesses!!!Howcanyou ignoreallofthesepeople?Obviouslythisisreal!!!!!You see$$$$$Iseemanslaughter! DaneHenriksonAreyoujoking?Yourcompanyshould beburnttothegroundwithmisleadingguidelinesto saveabuck.Youallshouldbeashamedofwhatyou represent.Mywifeandchildalmostdiedbecauseof LymesandnowIhavebeendiagnosed.Doctorscan't curewhattheyhavenotrainingaboutduetoyour guidelinesthatprotectagreedygroupofpeople. Insurancewillnotcoverthisillness.Afterwetreatthe membersofourfamily.Wewillbeforcedtoliveoffthe grid,andIhavelostallfaithinthiscorruptsystemthat hasgrownsouglyandevilthatplacesgreedbefore health.Americawasfoundedinatimewhenpeople fearedforfreedom.Nowwehavetoworryaboutthe chemicalsbeingsprayedintheairtomakeussicker. JenniferCowferRoe"MissionIDSAspurposeisto improvethehealthofindividuals,communities,and societybypromotingexcellenceinpatientcare, education,research,publichealth,andprevention

relatingtoinfectiousdiseases." I'dlovetoexperiencethepatientcare,butnoinfectious diseasedoctorwilltouchortestforLymeinAlabama. I'mwonderingabouttheeducation,because5ofmy familymembersinPAhavebeenbittenbyticksthis yearandeachweresenthomewithdifferent informationandprescriptions.Onewastoldthatthere isnoLymeinPA.Onereceivedonedayofanantibiotic, one2days,one10daysandonewasgiventhirtydays buttoldtonotevengetitfilled.Soevenyourown doctorsfollowingyourguidelinesareconfused. IhavehadchronicLymefor31years.Iwouldnever havetakenthechanceI'dpassitontoachildifIhad beendiagnosed.I'dlikeyourmembersinvestigatedby anindependentpanelandallthosewithconflictsof interest,(i.e.,pharmaceuticalties,insuranceties, vaccineties)tostepdown.Thereareplentyofdoctors availablewhoaren'tcorruptedbythepoliticsand money.I'dliketoseesomeresearchintoreliable testing.I'dliketoseeanewboardcomeforwardand allowdoctorstheleewaytotreattheirpatientsasthey seefit.I'dliketoseeintegrityandcompassionfroma medicalsociety. Thisisepidemicandtheblameissquarelyplacedat yourcurrentguidelines'feet. ValerieMainsWolferTheignoranceandarrogance surroundingLymeDiseaseisappalling.Putpoliticsaside andstarteducatingthemedicalcommunityandpublic aboutLymeDiseaseusingclinicalbasedevidenceand currentresearch;reviseyourguidelineswhichare obviouslyoutdatedanddoingmuchmoreharmthan good;reminddoctorsthatLymetestsarenotaccurate andinsisttheyshouldnotbereliedupontomakea diagnosis;replacetheentirecommittewithphysicians whoactuallyhaveextensiveresearchandclinical experiencetreatingLyme....immediatelyremovethose withconflictsofinterestorhiddenagendas.Remember andabidebytheHippocraticOathyoutookandstart savinglivesinsteadofdestroyingthem. DaneHenriksonWhenyouseethedamagethishas doneandwatchedgoodpeopleloseabattlewith health,itchangesaperson.Iusedtosupportleadership ofthefreecountry.NowI'mshockedandscarred. ValerieMainsWolferLisa,Thankyouforpayingrespect andremindingusofalltheliveslosttothishorrific disease.Tothosewhodonotunderstandjusthow

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CarynBradyTruthandcompassion. debilitatingandpainfulLymecanbe,Ihopeforyour sakeyouneverneedtofindout. MaddieRoseFindacure.It'samazing..IfyoucureLyme diseaseyouwillmostlikelycuremostcasesof NaomiHarttomaketheguidelinesonborreliosisreflect Autoimmunediseasesetc.OHwaitthenyouwould thescientificevidence,asisthecasewiththeILADSand havetoadmityouareresponsibleformisdiagnosing GermanborreliosisSocietyguidelines.IDSAguidelines MILLIONSofpeopleandmanypassingaway!Atthis notonlyaffectthoseintheUnitedStates,butalsoin pointIdon'tcarewhatyouhavecausedinthepast.Lets countrieswhosegovernmentsfollowthemuncritically. fixthis.PLEASEnomoresuffering.:( DaneHenriksonTellyourstories.Letthemknowwhat SteveZoccoliIwantaccuratediagnosticandtreatment weregoingthrough,andhowmanyhavedied. guidelinesaroundLymeDiseasethatarealignedwith ILADSaswell.Wentundiagnosedfor30years!Have DavidLeggettBeopen,don'thangontovested spent$80,000ontreatments interests,lookateverything ValerieMainsWolfer Theignoranceand thatinsurancecompanies objectively,listentothe arrogancesurroundingLymeDiseaseis refusetopayfor,becauseof storiesofpeoplewho yourilladvisedtreatment sufferintenselyfromLyme appalling.Putpoliticsasideandstart guidelines. DoesEVERYTHING andtickbornediseases. educatingthemedicalcommunityand Thankyouforasking. havetobeaboutthemoneyin publicaboutLymeDiseaseusingclinical thiscountry?PLEASEREVISE basedevidenceandcurrentresearch; DeviShaktiRevisetheIDSA YOURIDSATREATMENT LymeGuidelines!!Because reviseyourguidelineswhichareobviously GUIDELINESFORCHRONIC oftheseguidelinesIwent LYMEDISEASE!!!PLEASE! outdatedanddoingmuchmoreharm undiagnosedforyears!I thangood;reminddoctorsthatLyme lostmyyearcareerasan KarenTananaPacereversethe ILADSguidelinestoincludein RN,myhome,mydignity testsarenotaccurateandinsistthey depth treatment....accessto andwashomelessbecause shouldnotbereliedupontomakea easydiagnosis...toomanyoifus ofthecorruptionofthe diagnosis;replacetheentirecommitte aresuffering!~xo IDSA.Stoplying,stop withphysicianswhoactuallyhave denying.Iwantmylife back.Ilostmychildrens extensiveresearchandclinicalexperience CarmenLarsonIwouldreally childhoodbecauseofyou liketoseeastatementthat treatingLyme....immediatelyremove people.EVERYONEisarisk therearenolongerguidelines thosewithconflictsofinterestorhidden includingyourfamilies. ontreatingLymedisease.Just agendas.Rememberandabidebythe Standuptothecorruption. leaveituptohowanydoctor Standupforthepeopleand HippocraticOathyoutookandstart seesfit.Justscrapthewhole thing.Thenpatientswon't whatisRIGHT. savinglivesinsteadofdestroyingthem. complaintoyouaboutyour flawedguidelines,anddoctors DeviShaktiAndallofmy candowhatevertheywantcausethereisnoguidelines childrenhaveitpassedfromme,andmyMotherpassed ittome.Andmyexhusbandisinfectedbecauseofme. tofollow. Seeaproblemhere???? MichellePerryHAHAHA@Ruth...ifonlythatwould MatthewTylerWow/just,wow. happen...LOL! ScottBelcherMoretruthsaboutLymediseasetocome JenniferCowferRoeExcellent,Wendy! out,andforittobetestedfor,andtreated,much earlierandoftenwhencasesoccur!!! LoriSullivanMangrumLateStageLymeDisease Symptoms: Mostcommonsymptomsreportedby1000Patients CindyCumminsIwantaccuratediagnosticand withpersistentborelliainfection:(%ofPatients) treatmentguidelinesaroundLymeDiseasethatare alignedwithILADS.

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Fatigue:96% BrainFog:87% JointPain:78% LossofBalance:60% Headaches:57% NeckPain:56% MuscleTwitching:55% Insomnia:52% MuscleWeakness:51% VisionFloaters:48% MoodSwings:47% AllOverBodyPain:43% NoiseSensitivity:42% HeartPalpitations:41% Lightsensitivity:40% NightSweats:36% RinginginEars:36% DeepBonePain:35% LowBodyTemperature:35% NumbnessHandsandFeet:33% AirHunger:30% Migraines:30% RibCagePain:30% SensitivitytoSmell:26% Ifyouhave5ormoreofthelistedsymptoms,thereisa verygoodchanceyouhaveLymeDisease.Remember testingisonly40percentaccurateandyoushouldbe diagnosedclinicallybaseduponyoursymptoms.You willneedtoseeaPhysicianwhospecializesinLyme Diseasetreatment. MarthaChampionIwouldlikeyoutoSTOPignoring latestagechronicLYMEdisease.Ihaveacopyofallthe commentsuptonow,justincase.Thisisaserious problemanddeservesrealhelp. LauraUscheriwouldlikeutoallbearrestedformurder becauseofalloftheinnocentchronicLymepatients thathavebeendeniedpropertreatmentduetoyour guidelinesandhavediedasaresultofit... ValerieMainsWolferItwillbeinterestingtoseehow theIDSAhandlesallofthesecomments...wonderifall ourcommentswillbeignoredordeleted?Iwishthere wasawaytosendtheentirelinktoeverynewsstation inthecountry.:) CathyCardwellWoodburnTakethegagorderoffofall theMD'sandallowthemtobeeducatedonthetesting, diagnosingandtreatingofLYMEDISEASEandCo

infections!!!!Allowallthepeoplewhosuffertoget treatedcorrectlysotheycanlivenormallives. ThaneLymeIthinkitwouldbefantasticifin2012you couldfindafaintthreadofmoralityinyourdark corruptedsoulsandUNBLOCKALLTHECHRONICALLY ILLLYMEPATIENTSYOU'VEBARREDFROM COMMENTINGONTHISPAGE!!! PumaOfThenorthIagreecompletelywithThaneand wanttoknowwhyIhavetopostusingmycat's facebookaccountwhentherealcriminalsarethe peoplewhowritepurposelymisleadingLymedisease& coinfectionguidelinesharmingsomanylives.Ihope onedaythereisaclassactionsuitandsomeofthe peoplewhokeepwritingphonyguidelinesgotoprison. MichellePerryTheyblockedyou?????UNREAL!!!!SoI assumewewillallbeblockedaftertheyseethis??? SaraSchultzForstarters,youcouldhelpputanendto thepharmaceuticalindustry'sfundingofmedical schools....personallyI'vealwaysthoughtthatthere mightbeaSLIGHTconflictofinterestinthatarea,don't you??AlsopleasequitbringingyourIDSAconferences toCanada.THANKYOU!! JeffChristnagel Http://www.facebook.com/nondeployedgwimoregulf warillness;coinfectionsinthepopulation.Lyme relation DeniseWeaverIwouldsuggestyouhelpmeandallof theaforementionedaswewillsoondiewithoutyour help....ChronicLymeDiseaseandItsCoinfections NaniLaurianoLuculescuhonestguidelinesforLyme disease...thestatusquoisshamefulandmisleadingat best. KathyObalCarlstromIwouldliketoseetheretraining ofeveryinfectiousdiseasedoctorintheUSA,sothat thebroaddegreeofmisinformationaboutLyme Diseaseandcoinfections(mycoplasmas,etc)whichhas beenprofessionallydisseminatedtothisgroupofMDs canbeunraveled.Professionalretrainingcoursework shouldbemandatedforallIDdoctorssincetheproblem isnowsosevereanddangeroustopublichealthboth nationallyandabroad.IDdoctorshavesadlybeensome ofthemostillinformeddoctorsIhavecomeacrossand areunequippedtodealwiththeveryseriousdiseases theyshouldhavebeentrainedtotreat.

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MelThornburgS.O.S.wehaveheardfor35yrs...Idon't expectyoutohelpthepeoplenow...Whatyoushould doisreturnallthosefundsfromdoctorswhotrusted yousotheycandotheresearchwehavehadtodoto survive.BeGonewithyou. MarcHopePutLymeonthemap.Giveaclearandeasy wayforinfectiousdiseasedoctorstoexploretesting andtreatmentoptions.Evenifthatmeanslongterm treatment. CarolConnollyIwouldliketoseemysocietyspeakout andhavethemembersoftheIDSAwithconflictsof interestLEAVE,andhavetheirreplacementsmake policybasedonscientificstudies. MarissaBellaCassellaIDSAIandthousandsofother Lymepatientswouldloveforyoutochangeyour perspectiveonCHRONICLymedisease.Bychanging yourperspective,ImeantoadmitLymeischronic,that ticksarefoundbasicallyeverywhereduetotravel,that thousandsarebeingmisdiagnosedwithother autoimmunediseases(i.e.Lupus,MS,ALS,Chronic Fatigue,etc),andtakeslongtermantibiotictherapyin ordertogoinremissionfromLymeandcoinfections. Lymediseaseisaseriousdiseaseandhasevenkilled somepatients.Ifyouareasreputableasyouclaimyou arewithinfectiousdisease,whywon'tyougiveproper informationonLymedisease?2012isanewyear,a freshstart.Pleasestartsavinglives. MarissaBellaCassellaOh,alsopleaseadmitthatLyme diseasediagnosticequipmentisveryoutdateddueto it'ssensitivitylevel,whichiswhymanyLymepatients comebackwithafalsenegative.Pleasestopmisleading usall! MondayMercerMymotherdiedfromundiagnosed Lymedisease.Shepassedittoallherchildren.Ihave nowpassedittomydaughter.Iamnow61and basicallybedriddensinceIhavehadthismyentirelife andonlydiscoveredIwaspositive3yearsago!Assoon asIwasdiagnosed,Iimmediatelyknewwhatmy motherdiedfromandwhatwaswrongwithmy daughter.Haven'tenoughlivesbeenruinedbyyour faultyguidelines?DoctorsneedtostudychronicLyme diseaseinschoollearnhowtodiagnoseitandhowto treatit.Insurancecompaniesneedtocovertoexpenses fortreatmentuntilapersoniswell!Ourmedicalsystem hasbecomethatofathirdworldcountry!Changethe guidelinesNOWandstarteducatingthemedical professiontoday.Howmanymorepeoplehavetodie?

DebraRiceIwouldliketheIDSAtoactlikeasociety withmorals.IwouldlikeyoutoactuallyREADthe357 (andcounting)commentsonhere,ratherthanreacting withangeranddefensivenessasusual.Iwouldlikeyou totrulythinkabouteveryperson,andeverystoryon here,insteadofdeletingthepost,ignoringus,blocking us,callingusallcrazyorhypochondriacs. Iwouldlikeyoutoanswerforyouractions(andlack thereof).Toholdyourselvesaccountableforthe countlesswrongsdonetothegrowingnumberofLyme patients(peoplewhofightEVERYDAYtopull themselvesoutofthedevastatingquicksandofChronic LymeandCoinfections). Iwouldlikeyoutothinkofusasindividuals,ratherthan afacelessgroup.Thenlookatyourselvesinthemirror, askyourselvesifyouwouldtreatyourfriends,your significantothers,yourchildren,andyourselvestheway youvetreatedallofus.Iwouldlikeyoutoadvocatefor US,ratherthanforyourselves,yourwallets,andyour professionalaccolades. Everyoneofushasbeenthroughhell.Manyofusare stillthere,andmayneverleave,becauseofYEARSof beingmisdiagnosedandmistreated.Idlikeyouto acknowledgethis,andadmitthepartyouplayedin sendingusthere.Youcantignoreanddiscountevery singleoneofus(andallthosewhohavetragicallydied fromLyme)anymore. Youregoingtohavetoanswerforyourselves eventually.Youmayaswelldoitnow,beforeeven morelivesaredestroyed. DonnaZukaitisFalconeIwantyoutoswallowyour pride,admitthatChronicLymeDOESexist,andchange yourrecommendationsbyremovingthetime constraintsonthecourseoftreatmentsothat insurancecompaniescanstopdenyingtreatmenton YOURsayso. AmyHolbrookCarrIwouldliketheISDAtreatLymelike aninfectiousdiseasewithlongtermtreatment,like AIDSorTuberculosisforexamplereceives.Youhave suchamajorepidemicwithLymediseaseanditis spreadingsofastwewillsoonbenotonlyliterally paralyzedbutfigurativelyparalyzed.Iamawareoffour peopleinmyareaondisabilityduetoLymeDisease. BTW,Iamtypingthiswithtwofingersbecausetheyare myonlytwothatcanmovecorrectly.Helpsomepeople man,andsoon!

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DebbieMagnusIwouldliketoseeuptodateand accurateguidelinesforthediagnosisandtreatmentof bothacuteandchronicLymeDisease.Itishardto understandhowinourmodernsocietyandinthis country,thattherewouldbesomuchignoranceand misinformationaboutthisillnessespeciallyinthe medicalcommunity.IftheCDCguidelineswereupdated toreflectthescientificevidence,asinILADS,patients wouldbediagnosedsooner,sufferless,andmedical expenseswouldbereduceddramatically.Thisdiseaseis anabsolutenightmareforpatientsandtheirfamilies whendiagnosisandtreatmentaredelayed. ChuckBalzerWakeupandadmitthattheLymeDisease epidemicisrealandyouhavebeenwrongabout ChronicLyme.Itisthehighestlevelofcrueltytolabel sickindividualswithLymeashavingsymptomsthatare psychiatricinorigin.DrJemsek(sp?)saiditbest; (paraphrasing)"Whenmycritics,orsomeonecloseto themgetLyme,theywillchangetheiropinion/open theirmind,andseektreatmentsuchasIamproviding" SilviaSchererEnglandIwishonthemnothingbutLyme disease,undiagnosedanduntreatedfor10yearsthen theywouldknowwhatarewereallygothru.nothing havingLyme,livewithittobelieveit! CynthiaLeonardIhavesomuchtosaytotheIDSA aboutLymediseaseandtheirlackoftransparencyin tryingtounderstand,diagnoseandtreatLyme.Iwish theywouldstoptheirwarwithILADSanddoctorswho disagreewiththeIDSAguidelines.MostlyIwishIDSA wouldstopfalselyinfluencingdoctorsandpermit primarycaredoctorstotreatLymewiththeirbest medicaljudgmentwithoutprosecution. MaryHarrisonChangetheLymediseaseguidelinesso theyarebasedonmorecurrentscientificfindingsand lessonopinion. BrianBurkettIwouldlikeyoutofindoutWHYevery womanandmanwithLymes/coinfectionsofBartonella, BabesiaandMycoplasmas,Soldiersandspouseswith MycoplasmaFermentansareINFERTILEorhavechildren w/seriousbirthdefects.YouKNOWwhatisgoing on....it'stimetotelltheworldwhatyoudidandwhyit's beingcoveredup..... BettyannSenfAspreviouslystated,Changeguidelines fordiagnosisandtreatment,stopthepersecutionof LLMD's,educateprimarycaredrsasthatiswherethe misdiagnosisstarts,andadmitthereischronicLyme

andcoinfections.Allthesepeoplepostinghavereal issues/symptomsandneedtreatment.Insuranceand SSDneedtorecognizechronicLymeandsupport patientsnotdenythemcoveragesotheycansave$$$$. Itisjustwrong!!! MarcieStefaniakDonovanThetestingforLymedisease hastobemoreaccurate.Manypeoplearesuffering withthishorriblediseaseanditisnotevenbeing acknowledgedasarealdisease.Also,twoweeksofabx isnotcuttingit.Longtermabxtreatmentissometime neededforacureandIDSAguidelinesdoctorsarenot treatingright.Pleasetakethesecommentsseriously. TaraKWatsonIwillreiteratewhateveryoneaboveme hassaid...recognizechronic/neurologicLymeexists!I went20+yearswithoutdiagnosis!Iwas10yearsold whenIstartedgettingcrazyunexplainedsymptoms I'vebeendiagnosedwitheverythingwithmy(now former)PCPdiagnosingme. SusieRosenbergI'maphysician,andI'dlikeIDSA physicianstobehaveinaphysicianlymanner:know whatyoudon'tknow.Becurious.Becompassionate. Listentoapatient'shistoryasifyoudon'talreadyknow theanswer.SponsorREALresearch:thekindthatisn't setupfromthebeginningtogiveyoutheanswersyou seek.(Suchasrequiringthedocumentedpresenceofa rashforstudyadmission,thenconcludingrashisan essentialcomponentofthepresentation. DaveMarshAfteratickbitealmost10yearsago,witha fullerythemamigransrash.Iwasmisdiagnosedfor7 yearsbyabout30Drs.,includingmultiplespecialistsat MayoClinic.I'vehadnerveandtendonsdamaged, constanttinitus,neurologicalproblems.Ialso developeddiabetes,highbloodpressureand unexplainedhighcholesterol.Thesearejustaportionof theproblemscausedbymyChronicLymeDiseaseand multiplecoinfections.I'veseenmyLLMDlosehis licenseforunknownreasons,Ibelievehesavedmylife! Wewhosufferwiththishorriblediseaseareconstantly offendedbytheCDC'sstancethatLymeishardtocatch andeasytotreat.Mywifewassuccessfullytreatedfor earlyLyme,becauseofourawareness.Mydaughteris beingtestedproperlynowforChronicLyme,andaclose friendofminerecentlyhadapositiveIgenixtest,andis nowbeingtreatedforlatestageLymeandco infections.WeallliveontheIllinois/Wisconsinborder. ChronicLymeisanepidemic!Pleaseaddressthis diseaseproperlytokeepthousandsofotherpeople

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fromhavingtogothroughwhatsomanyofushavehad toendure. TaraKWatsonI'vebeendiagnosedwitheverything, withmy(nowformer)PCPdiagnosingmeasbeinga hypochondriac.Ihavesufferedandlostoutonmostof mylifebecauseofthisdisease!Thelastfewyearshave beenanabsolutenightmare...Idon'ttestpositivefor Lyme,butIhavebrainscanstoshowthedamage.Look attheevidence...lookatthestories...realizemore moneyneedstobeprovidedforresearchandthe guidelinesneedtobecompletelyoverhauled.If3years agoIwasonlygiventhestandardcourseofdoxy,Ican guaranteeIwouldeitherbedeadorwouldbeina nursinghometoday. AlanBurdgeWOW!!!!!!!!!!!!!!!!!!!! IDSACANRUNBUTTHEYCAN"THIDEFOREVER! HOWMUCHLONGERCANYOUKEEPALIDONTHIS DISEASE????? ISAWTHEADONTHEJUMBOTRONINTIMESSQUARE! LYMEDISEASEGROWINGFASTERTHENAIDS!!!! AlanBurdgeIHAVESEENTURTLESTHATMOVEFASTER THANTHEIDSA. WEWILLALLBEDEADBEFORETHEIDSACATCHES UPWITHTHISDISEASE!!! BrianBurkettAtthispoint,Ihaveinterviewed+ soldiers,spouses,Lymepatients/spousesandmanyof themareinfertileifnotonABX.Mostwomensuffer fromEndometriosisandprogresstoPolycysticOvarian Disorder.Thisillness,LymesandInfectious MycoplasmascauseINFERTILITY!!! KimTarboxIwouldliketosincerelythankyoufor askingandamprayingthattheseanswerswhile emotional,aretakentoheartbyyourorganizationand wecanallfightthistogether.Thereissomuchpowerin forgivenessandthisisthetimetomoveforward ....together.Ipraythatsomeonerespondsanddoesnot allowallofthesepleastoremainunvalidated. Respectfully... BrianBurkettMyinformationisnotfromsome website,myinformationisfromtalkingtoREALpeople. EverydayImeetsomeonenewwhoisillwiththisbut hasnodiagnosis,orhasbeendiagnosedwithone illness,buthavingseveralotherundiagnosed symptoms.

SherrynJacksonIliveinAustraliaandyoupplholdthe keyforustobetreatedproperlyasgovernmentherego byyourrules.My4yroldandIbothhaveitandmaybe myothertwoaswellmyhusbandiswatchingusdie beforehiseyesknowingnothingcanbedone.What happenswhenitisoneofyourfamily?WillyouChange therules?AllowtheinfotogetoutandallowDrsto treatpatientsproperly JennyGuzdekIbelieveonceLymeisrecognized,our nation'shealthinsuranceandeconomicissueswilltake aturnforthebetter. BrianBurkettOnegirliinterviewedhasclassisLyme symptomsandwasgivenashortcourseofABX,toldshe wasfine,nowshehasIBS,CFS,Neuroissues,migrating jointandmusslepainANDAHYSTERECTOMYAT25YRS OLD. JennySwartRushStepforwardfreshly...lookatthe evidence(sickpeople),talktothedoctorstreating them,behonest...workingtogetheradifferencecanbe madefortensofthousandsofpeoplewhowanttobe healthyandworkandenjoytheirfamilyresponsibilities. JaneWebbIwouldlikeforIDSAtoreevaluatetheir guidelinesinregardstothetreatmentofLymedisease. Longtermantibioticsistheonlytreatmenttooffer hopetothosepatients.Ithinkthatphysiciansshouldbe abletotreatbasedontheirbestjudgmentandthe informedconsentofthepatient.Thankyouforforthis opportunitytovoicemyopinion. KellyDemersItissodisgraceful..Doyouseeallthese commentsIDSA??Wearesick..Notbeingtreatedas humanbeings.Wewantwhatisfair..Tobehealthy again...Wouldntyou?Weareangry,becauseyoudo notlisten.Whathappenedtoourhumanrights?Its disgustingthatafterhowlongofusyellingforhelp,you nowyouasksuchaquestion??YouareplayingGod withhumanlives..Getoffyourhighhorse,recognize theissues..Theyarerightinyourface..Weneedhelp, bettertreatment,betterknowledgeablephysicians,and themostimportantthing...ALLOWthephysiciansto treatusaccordingtoourbodies.Nobywhatyouthink isthetreatmentplan.. Sincebeingsick,withchronicLyme,myeyeshavebeen open..Iamsaddenedbymyowngovernment,Byyou, byPharmaceuticalcompanies.Byphysiciansthatfollow yourignorantguidelines.Byhowyoublackball Physiciansthattrulycareandaretryingtotreatus.I

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toreconsidertheguidelinesregardingLymediagnosis haveneverdislikedanorganizationasmuchasIdo andtreatmentmethodologiesbeforeonemorehuman yours.Youcannotuseoneguidelineforhundredsof beingiscastasidebyoutdatedprocesses. thousandindividuals,IFNOTmoreofusoutthere!Its rightinyourface,yetyouchoosetoignoreit..Ileave DeniseStGermainIwouldlovefor"you"theISDAto youwiththis,Wewillcontinuetofightforourrights, "see"eachandeveryoneof"us"sufferingfromchronic wearenotgoingaway,thereissomanynewpeople tick/vectorborneillnesses...ImeanREALLY"see"us, gettingsick,untilonedaytheworldischronic..I promiseyou,Youcantkeepusallquiet.. Countourheads,youalreadyknowhowdangerousand widespread(everystateintheUSA)Lymeis.Nowisthe KatherineAMorrisonBettereducateyourdoctor'sre: timeforyoutostepupandredeemyourselvesby Lymedisease.Changetheguidelines.Ihadthebulls validatingtheworld'speoplewithTRUTH!!!Armthe eyerashandthebartonellarash.Testingisinadequate. peoplewithfactsandguidelinesthatreflectexactly MostinfectiousdiseasedocsjustsaidthereisnoLyme howserioustick/vectorparasitesandinfectionsare.No here.Iamnotlongerableto furtherresearchisnecessary workordohouseholdchores. KatherineAMorrison Bettereducate toevaluatejusthow Healthflewthecoopin2001 devastatingtheeffectsofnot your doctor's re: Lyme disease. Change . gettingpromptandproper theguidelines.Ihadthebullseyerash KatherineAMorrisonAll medicaltreatmentonce otherconditionswereruled infected.Justcounttheheads andthebartonellarash.Testingis out.AttendILADS inadequate.Mostinfectiousdiseasedocs ofthoseofuswhoknowwe conferencesandlearn. havebeeninflicted.It'snot just said there is no Lyme here. I am not thathard.InspiteoftheISDA longerabletoworkordohousehold KatherineAMorrison guidelinesforminimal attention/treatment forLyme Insurancewillnotprovide chores.Healthflewthecoopin2001... spirochetes,parasites,co medsduetoIDSAguidelines. infections,borrelia Doc'sareafraidtotreatdue Allotherconditionswereruledout. burgdorferi,bartronella, toIDSAguidelines. AttendILADSconferencesandlearn. babesianameafew,continue tothriveintheirhosts. LeslieFarhangiThereistoo muchhysteriaintheLyme ...Insurancewillnotprovidemedsdue Iamhostandhavebeen area.Butjustbecausethere toIDSAguidelines.Doc'sareafraidto since1998,withthemedical is,doesn'tmeantheIDSAhas testresults(andbills)to topushagainstit.Iwouldlike treatduetoIDSAguidelines. proveit.Havingbeendenied theIDSAtoopenitsmind andadmitthemedical promptandproper communityknowsverylittleaboutLyme.Andthatthe treatment(notreatmentatallinmycase)fortheinitial fieldisfullofholesnoadequatetest,nopreventative tickbite,byDrPamelaRoss;whoclaimedLymewasnot treatment,andinadequateresearch.Asaresultyou myproblem.Shesuggestedcounselingtobetter cannotdefinitivelysayhoweverysinglecaseshouldbe managemyemotions.Iwasdischargedfromher treatedyoudonotknowenoughyet.Iwouldalsolike practiceandaffiliatesbywayofaletterstatingmy toseeLymethoughtoflikesyphilisinthattheyareboth behaviorasdifficultandnoncompliant(Iwouldn'ttake spirochetaldiseases,botharecurediftreatedearlyand theProzac!).ThisletterprecededmeEVERYWHEREin bothcauselastingandsystemicdamageifthey themedicalcommunity.Unfortunatelyforme,theISDA disseminate. guidelinesconfirmedDr.Ross'signoranceandIremain infected. DennisDamianCreativeAllIcansayisthankGodfor ILADS,asthreeofus,(myself,mywifeanddaughter)all Yet,Igoon,Ilive.Forcedtobemyownhealthcare werediagnosedthisyear.Allofusarereceivinglong providerwhilebeingdeniedbytheISDA.Whoneeds termtreatmentbyacaringprofessional.Sadly,thiswas theISDA'slackofresponsibilityanyway??Thereare many"othersciences"tochoosefromwhen aftermywifesawoneofyouwashospitalizedbecause encounteringinfectiousdiseases.FollowingISDA ofDr.IDSAfailedtotakeactionthatcouldhave guidelineswillsurelybethedeathofme.Whenthe preventedtheworseningofhercase.Iwouldurgeyou

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BryanCurtisAcknowledgethe"elephantintheroom," ISDAisinagreementwiththetruthaboutChronicLyme getbacktothemissionofsavingandimprovinglives andthe"othersciences"proofandtruth,Iwillbeseen ratherthanliningthepocketsofinsuranceand !!!! pharmaceuticalcompanies,andperhapsevenyour own.Greedandpridearekillersoftrueadvancement. Iamonlyone.Therearethousandswithsimilarlife alteringstoriesofLyme,Countourheadsandtellthe KarenDurmPleasedirectfundingtoLymeandother truth!!!! tickborneillnesses.Wedesperatelyneedtestingand treatment. WewillNOTgoaway!!!! HeidiBuonoIwouldliketheIDSAtofocusonthetrue AndreaMcLainFennellAllmymilitarydoctors pictureofLymeDiseaseandassociatedcoinfections. diagnosedmewithChronicLymediseaseand Therearemanypeoplelikemyselfandmythree prescribledmelongtermIVantibiotics.Mybloodwork childrenwhohavebeen waspositivebyanyones debilitatedbythisdisease.I WishyaKnew Properlongterm standards.Ittook3yearsfor hadnothingbutgrieffrom themtocometotheir treatmentoptionsforlatestageLyme aIDSAmemberwhilemy diagnosis.Believeme Diseasepatients.Forpatientstobe childrenstayedsuffering. everythingwasruledout.Even treatedfairly.ForourLLMDstonothave Thisiscriminalandevilin withallthetestsanddoctors tofearfortheirjobsforseeingand originonsomanylevels. agreement,whenitcametime Wewillnotgoaway. treatingus.Forthecountlessdoctorswho fortheinfectiousdisease doctortowriteformymedical havethrowntheirhandsupintheair SylvianeSchwarzWithall board,hesimplystatedthathe whenImention"theLword"andtoldme followstheIDSAguidelinesand duerespectyourLyme diseasemedicalguideline IcouldnothaveLyme.What theywerenotgoingtodiscussthat hasmiserablyfailedmemy then doIhavetheninhis diseasetobefreefromfearandnotbe healthwasdeterioratingat opinion??Simplysomething toldoutrageousLIESanymoreaboutthis analarmingspeedaftera badthathasdestroyedmylife disease! tickbitein2005andIhad andcareer,itisvery todosomething.GladIdid unfortunateandtheIDSAsees notwaitaroundveryillin thisalotbutunfortunately bedaswaitedforyouinordertocorrectthewrong thereisnothinghecandountilthebloodworkismore doingyouhavetohumanity.LuckilyIfoundoutabout clearorsomethinggoesterriblywrongthatwould ILADSandIammuch,muchbetternow.AsaresultThe suggestsomethingelse.YourdoctorsrelyonYOUR InternationalLymeAndAssociatedDiseasesSociety bogusguidelinesandhavestoppedpracticingmedicine! (ILADS)is"mySociety"notyours.Hereisthelinkshould Firstlessonyoushouldlearnthisyearis"thereareNO youwanttobroadenyournarrowmindedvision. absolutesinmedicinenorscience".Thereisalways http://www.ilads.org/ moretolearnandbacteriaisalwayschanging.Lyme patientsonlyaskthatyouinvestthetimeandeffort https://www.facebook.com/pages/ILADSLymeSociety/ intoresearchingLymediseaseandlistentotheresearch Haveagoodday! thathasalreadybeendone!! RickenPatelHiIDSAassomeonewhodoesnothave JanetDeCesareHerewegopeople:IDSAisnotrelying LymeorchronicLyme,IwasstruckwhenIlookedinto onscienceofthedisease,theyaremoreinterestedin thisissuebythegapbetweenthestrengthoftheIDSA's conclusionandtheweightoftheevidence.Thehistory relyingontheiropinionsthanfixingtheproblem.The ofmedicalscienceislitteredwithexamplesofmistaken guidelinesforLymediseasearesostrictand orthodoxysustainedfortoolongbyinertia.I'msurewe controversial,itseemsasthoughtheIDSAlimitcertain allsharethesamegoalofpromotinghealthisthere typesofdiagnosesandiftheLymepatientdoesn'tshow notsufficientdoubtatleasttomakeascientificcaseto orhaveproofofhavingthedisease,theywon'tgetany keepinvestigatingthis?Perhapsinresearchstudies treatmentorthetreatmentstheyhavebeenreceiving designedwiththeparticipationofLymeliterate aredismissed!Thesadpartofallofthisistheprestige doctors? thatIDSAcarries,theinsurancecompanies,the

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pharmaceuticalsaremakingahugeamountofmoney offofuswhohaveLymedisease,andourhealthhasn't improved!Lymediseaseisverydebilitating,manyofus includingmyselfhavehadtoresorttotakeastandfor ourownhealthcare.Becausewehavecometothe realizationthatthishorrible,deplorable, heartwrenchingdiseasechangeslivesandcanchange yourfamily'sstabilitybeyondbelief! Wearebeingpushedaround,ignoredandwearesick andneedhelp,butisanyonelistening?It'slikeplayinga gameofchess,gooddoctorsvsbaddoctors,good medicinevsnomedicine.Lymediseaseisanightmare thatnevergoesaway,notjustforthepatientbutfor thefamilies.Thenwhenwehaveknowledgeable LLMD'swhounderstandthetreatmentprotocols,how Lymediseaseworksinone'sbody,thecorrect medicationtotreatit,thenyouputtheminharm'sway, why?ThemainstreammedicalcommunityandIDSAare complainingabouttheuseofantibioticshowtheycan inducesuperinfectionsfromoveruse.Well,letmetell youIDSAifitwasn'tforthoseantibiotics,Iwouldhave diedbackthen.SOyouseetheydowork!!!!!! Butitdoesn'treallycomedowntothecostsorthe money,itisallthetimethathasbeenlost,the aggravation,andthesufferingthathasdevouredour livesandhurtsourspousesandfamilies.Iwasshuffled fromdoctortodoctor,likeadeckofcardsnotknowing whatfatewastofallonme.That'swhathasreallyhurt! Ifeellikeyouarestrippingme,demoralizingmeand denyingmyrightsasaUScitizenwhobynofaultofmy ownendedupwithadiseaselikeLymedisease.Having Lymediseasehasbeenadifficultandbumpyroad.AsI havesaidbefore,ifthiswascancertherewouldnotbe anyissuesontreatmentprotocolsortheexpense, becauseinsurancewouldcoverit! Sowhatevertheoutcome,IwillcontinuetoFIGHTTHE GOODFIGHTFORLYMEDISEASEanditsCO INFECTIONS,Iwillstandup,Iwon'tbepushedaround becauseIcan'taffordtodoso.AndIhavealso mentionedthatsomeday,IDSAyouaregoingtomeet yourmaker,andwhenGodasksyou,"Whydidyoulet somanypeopledown,whydidn'tyouhelpthem,where didallthemoneygo,howmanyliveshavediedbecause youdidn'tdotheproperjoboftreatingthesevictims? What'syouranswergoingtobe?Whetherornotyou believeinJesusChrist,youwillhavetoanswerforthis, sogoodluck!GodBless

DoreenaSticeIwouldlovetoseeyourguidelines changeforLymedisease,andletpeopleknowthat ChronicLymeisreal. KellySmithLymepatientsneedhealthcarelike everyoneelse.Bettertesting!MoreLymeliterate doctors!Peoplearestrugglingthroughlife,goingbroke payingfortheirhealthcare,travelingmanymilesfor helpandevendyingbecauseoftheIDSAguidelines. JenniferOttI'dagreewitheveryoneaboveme recognizeChronicLymeDisease.LoudounCounty,VAis 35milesfromDCandthe1#regionofthecountryfor thisdebilitatingdisease.It'srealandit'skilling Americans,andyouseemOKwiththat?!? KristieYutzyHowaboutyouissuesomeguidelineabout ChronicLymeDiseasethatarenotfueledbygreedy scientists/doctorswhohavepatentsonpartsofthe bacteria...howaboutyouwarnalltheunsuspecting peopleinthiscountrythatLymeisEVERYWHEREand carriedbymorevectorsthanonlydeerticks....how aboutyouWAKEUPandseejusthowmanypeopleare sufferingwithChronicLymeandrealizethatyouare ruiningpeople'sliveswithyourtreatmentguidelines??? Weneedmoredoctorstotreatus..theoneswhoare braveenoughtoopenlypracticeareoverwhelmed,and familydoctorsaresoscaredtomentionLyme,thatthey changethesubjectwhenLymeisbroughtup. RIDICULOUS.Helpallofuswhoaresick,helpusregain ourlives,andplease,please,helpusprotectothersand thefuturegenerationsfromthisdreadeddisease. PLEASEHELPUSHELPOURSELVESANDOTHERS! JuliRankinManciniIDSA=organizedcrime.I'dliketo seetheinternalIDSAcrooksgoawayinthisupcoming year.I'dliketoseetheIDSAdowhatisbestforthoseof uswithLymeandgetridofthosepiquedinspecial interests,whichpreventusfromgettingpropertesting andtreatment.TheIDSAmakesussickernotbetter...fix it! PamDoddHonestyaboutLymeandhelpforpeople whohaveitbeyondtwoweeksofantibioticsand"you shouldbefine." WishyaKnewProperlongtermtreatmentoptionsfor latestageLymeDiseasepatients.Forpatientstobe treatedfairly.ForourLLMDstonothavetofearfor theirjobsforseeingandtreatingus.Forthecountless doctorswhohavethrowntheirhandsupintheairwhen

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Imention"theLword"andtoldmetheywerenotgoing coinfectionssuchasbartonella,babesia,ehrlichia,and othertickborneorganismsaspersistentinfectionsthat todiscussthatdiseasetobefreefromfearandnotbe requireaggressiveandLONGTERMTREATMENT.The toldoutrageousLIESanymoreaboutthisdisease! ideathatSyphilis,anotherspirochetalinfection, requireslongtermtreatmentforStage2andbeyond MelissaKerinsWell,beingdisabledattheripeoldage andBbdoesnotispureinsanity.Bringrealscienceback of27fromacuteLymethatwascaughtwithin3weeks totheIDSAandmedicine. fromthestartofsymptomsandtreatedaggressively. Stillleavesmedisabledifnotmoreanditsgoingon5 years. TonyaLakeLewisDevelopaccuratetestingforlymeand educateprimarydoctors.Productivemembersof Somethingdoesntaddup.itsonlyamatteroftime societyarestrickenbythisdebilatatingdiseaseandthe beforetheidsamembersandtheirfamiliesgetLyme.I coststopersonallivesandtheeconomicstatusofour betyouwonttakethewaitandseeapproach,orhere societyareinsurmountable.Itistimeforchange! isyour10daysofabx NancyKelleyIam PostfromInfectiousDiseasesSocietyof BEGGINGyoutochange WishyaKnewANDadmitthat childrencanbebornwithLyme youroutdatedguidelines AmericaIDSAwantstoencourageopen andwelcomesomeILADS diseaseandthatspousescan dialog,however,pleasenotethat docstobepartofyour contractitfromtheirpartner!I personalattacksagainstthesocietyorits boardwhichisresponsible wentundiagnosedforatleast fordevelopingprotocolfor 10years.Nowallthreeofmy doctors,foullanguage,andotherabuse treatmentofLymeandco childrenhavethishorrid willnotbetoleratedonourFacebook infections.PLEASE,there disease(twoofthemCDC+with wall.IDSAtakesLymediseasevery aresomanyofussuffering NOhistoryoftickbite)andmy seriously, for more information visit: husbandisnowpositiveas withthisdiseaseanditisso well!Twoofmyaffected difficulttofindaffordable http://www.idsociety.org/Lyme childrenhaveheartproblems treatmentwithoutour Doctorsfearingfortheir andsevereneuroproblems!All medicallicenses.ItistotallyunacceptableintheUnited inastatewhere"Lymediseasedoesnotexist" StatesofAmericathattensofthousandsofits accordingtoeverydoctorhereI'vetalkedtoaboutit.A populationbetreatedsoshabbilyandwithsuch friendofminewenttoadoctorwithaknowntickbite thathadabullseyerasharoundit!Doctorsaidit'snot disregardforoursuffering.Please,pleaseopenyour Lymebecauseitdoesn'texistintheirstate.CRIMINAL! goodmindsandheartstothepossibilitythatyouhave beenincorrectaboutyourguidelinesIamBEGGING. NottomentionLymeandit'scommoncoinfections causedseverescarringonmylarynexandvocalchords MelissaHanksChangetheguidelinesfortreatinglyme andmademehavetohaveacompletehysterectomyat diseaseplease.Ithastakenthelastfouryearsofmylife theageof29duetosevereendometriosis.Iwas awayfromme,itmaybetoolateformenowtogetmy misdiagnosedwithMS,thenLupus,thenIwastoldIhad lifebackseeinghowIhadbeenmisdiagnosedforso "ALSlikesymptoms"andTHENIwasaccusedofbeing manyyears.Mysongotinfectedfromatickbiteand analcoholicbecauseofmyhandstremoring(Idon't thepediatricianwouldonlygive3weeksantibiotics. drink!)Tamethemonstersyoucreatedthesedoctorsto Wellguesswhat?Assoonastheantibioticswere be! throughhegotanotherlymerashandsymptomscame back.Whyisthat?Icantellyouwhy,becausethe LorisaStombaughPleaserevisethetreatment guidelinesareflawed.ONLYbecauseIknewwhattodo guidelinesstopinfectiousdiseasedoctorsfromunder andtookhimtoaDoctorthatknewaboutthe treatingLymepatientsandrefusingtreatmentfor devastationlymecancauseandhewastreatedfor5 peoplewithLymedisease.Stopthetortureandtragedy monthsandtherashandsymptomswentawaywithno oflostlives. otherproblems.Thereisnodoubtinmymindifhehad notreceivedtheextramonthsofantibioticshewould KrisThecanarySisterlymeAmenCarolBarrett! beaverysicklittleboyrightnow.Irefusetoletthe MicheleWoodHaynesAcknowledgeLymediseaseand

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MyhealthdeclinedandIsawDr.afterDr.BEGGINGfor IDSAplaywithmyfamilieslivesbecausetheydontwant answers!EVENafterIhadabrainMRIandtheDR.at togivethepublicthetruth. theHospitalsaiditlookedlikeLyme.FinallyIwasina wheelchairandwassenttoanInfectiousDiseaseDr. BlessingPalyoHermanIamtryingtofigureoutwhy I'vehadtosufferneedlesslywithLyme,fightingfor whoproceededtotellmethatLymewouldNOTdothis treatmentformyself,beingbelittled,tryingtoprotect tome.MaybeIhadmentalissues!!!!!!!!!!Ihaveheard myunbornbabywhilepregnantandmyDOGgetsa thisstorythousandsoftimesfromotherLymePatients! moreaccuratetestandtreatmentthanIdid!WTHis wrongwithTHATpicture?DoSOMETHINGtocorrect IhadALLtheclassicsymptoms,bullseyerashbut testedpositiveafteryearsononlyOnebandsoIwas thissituation.WhyisLymeoneofthemostCensored refusedIVdrugsneededtoreachtheblood/brain storiesof2011from"ProjectCensored"? barrier.TestingforLymeisnotaccurate!WeNEED bettertesting!NowI'mbedridden,nervedamage, ReneeKopekAcknowledgethatLateStageLymeisa severeneurologicalproblems,damagedgut,extreme seriousdisease,difficulttotreatanddifficultto diagnose,thattheCDCrecommendationsarenottobe soundandlightsensitivity,memoryloss,etc...Lymehas usedfordiagnositic takenmylifeandthiscould Jan Connell I would like to see you start purposes,thatthetesting havebeenavoided!Apparently meaningfulworkonfindingacurefor forLymeisfaulty,thatif OURlivesmeanVERYlittle. nottreatedearlyLymeis StopdenyingLYMEpatients, ChronicLateStageLymeDiseaseand verydifficulttotreat. wearehuman!Wedeserve begintreatingtheseafflictedpeopleas Becomeproactivein compassionandtreatmentand human beings. Physicianeducationto prayeachdaythisisneveryou makethemawareLymeisa orsomeoneyoulove!WEneed possibliltyanywhereinthe acureforALLofussuffering country,notjusttheupperEastCoast.Refrainfrom anddying! callingthoseofusnotdiagnosedforyearsandyears DagmarWeisIamsufferingfor18years!!Correct andnowdisabled"hypocondriacswiththeachesand diagnosisandtreatmentcouldhavepreventedmefrom painsofdailyliving"....Ionlywishthatwasallitwas. beinginawheelchair.IdevelopedDiabetes,nerveand tendondamage,highbloodpressure,untreatablehigh CarrieGarmanthattheyacknowledgehowdeadlythis cholesterol,uncontrollablemovements,wentthrough diseaseisandhowmanyofussuffergreatlyonadaily basisfromitandstruggletomakeit!Itstorturous, fatique,insomnia,morethen80symptoms..andnow worsethanbeinginacellinthewarandtortured!Its it'saffectingmyeyesight.Shameonasystemthat deniespropercareandtreatment,shametothe awfultheyactliketheyknownothinganditsallinour countrythatpridesitselftobealeaderandsuper heads.LookatthemiceIjustpostedofspirochettesin power.Healthehomefront!!! thebloodofalivemouse!WEtherealpeopleofthe USAandalloverworldaresufferingwiththesethingsin TriciaSoderstromMyfamilyissinkingintodebtfrom ourbodies!!!!WILLYOUFINALLYHELPUS?? expensestocovermedicaltreatmentforLymedisease andcoinfections.Myself,myhusbandand3children BrianBurkettLymesandMycoplasmascausechronic areintreatmentandhavebeenforover2years.Weare illnessthatcausesanylatentvirusestoreemergesuch seeingpositiveimprovementsthatonlylongtermabx asHSV,HHV,Cytomegalovirus,EBVandEnteroviruses, hasbroughtabout!Weneedbettertesting,weneed normallythesearesuppressed.Butbyhavinga insurancecoverageforourLymedoctors.Weneedour CHRONICINTRACELLULARBACTERIALINFECTION(s)and Lymedoctorstobeabletotreatwithfreedomtotreat aloweredimmunesystem,WECANPASSTHESE thewaytheyseefitandsupportfromtheCDC.Iagree VIRUSES,BACTERIASTOOURCHILDREN!Listentous, withoneofthegal'sabove,ifinsurancecoveredthe Goddamnit! manymanymanyLymepatientsoureconomywould improvesignificantlybecausethethousandsofdollars CaroleBarrettIhadatickbite9yearsagoandclassic wespendeveryfewmonthswouldgotoward BULLSEYErash.IgotsickandwenttotheDr.whohad NOideawhatitwas,neitherdidI...then. purchasingthingsthatwouldboostournation's

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economy.Someoneneedstowakeuptothis!Theproof isinthepudding!Longtermabxworks! BonnieLiebI'dreallylikeforyoutogetyourheadsout ofthesandandseewhatisgoingonwithLymedisease. Itcanbedevastatinganditdeservesthefullsupportof themedicalcommunity. ErinReidCokerSomanypeoplearesufferingfrom chronicLyme...it'stimetoeducatethedoctorsandget thisundercontrol. KellyPattonNanney388comments!Ifnothingelse getsyourattention......Thatisjustamerefractionof thesufferingamountofpeople. JanetManganoIwouldliketohavemy34yearold bodyandmindthatIshouldhave.Iwouldliketobe abletorunwithmy3youngchildren.Iwouldliketobe abletowalkupanddownthestairswithoutpainand crackingsounds.Iwouldliketowakeupwithoutany paininmyheadarmshandschestfeetlegspelviships wristselbows.Iwouldliketowalk10feetwithout gettingdizzy.Iwouldliketobeabletohavesexwithmy husband,whoalsohasLyme,withoutthepain.Iwould liketonothavetobeonabunchofdifferent medicationsfromLymejusttobeableto"function".I wouldliketonothavea"sinusinfection"everymonth.I wouldlikenottohaverupturedovariancystsevery month.Iwouldlikenottowakeupmysteriouslywith pinkeye.Iwouldlikenottohaveanxietyandpanic attacksandrage.Iwouldliketobeabletogotooneof myHMOdoctorsandnotgetpushedasideandtellme allofthesethingsaren'tduetoLyme. Iwould'velikedtheERdrwhoveryfirstsawmein2008 tohadbeeneducatedenoughtoknowthatitwasatick biteandthesymptomsIwassufferingfromwe'reLyme diseaseandErlichia.Nottodismissmewith"justabug bite",and4yearslaterstillfightingthismonsterinside me.Iwantmylifeback!!ThereWASNOTHINGwrong withmeBEFOREthishorriblethinginfectedmyevery tissueandleftmewithjustanemptyshell.Iwouldlike tobeabletogettheproperdiagnosisandtreatmentfor Lymediseaseandnotjustgetdiagnosedwith fibromyalgiaandabunchofotherdismissiveconditions. Whywon'tyouhelpus!!????Whyareyoulyingand coveringupsuchanepidemic!?Maybeifoneofyouor oneofyourtrulylovedonessuffersfromityouwould understandthetorturewelivewithonadailybasis.

Pleasestopthecrimes!!!!!!Wewillnotbesilenced. Therearetoomanyofusdying. JaniceBakerBittnerYou'vegotlotsofcatchingupto do,IDSA.Yourpastperformancere:Lymediseaseand othertickborneillnesshasenabledthesediseasesto growintocomplex,multiheadedmonsters.Youneed toCATCHUPontheresearch,TRAINphysicianson proper,aggressivetreatment,andEDUCATEthepublic onthedangersofmisdiagnosed,undertreated tickbornediseases. BonnieLiebSorry,IDSAtakingLymedisease "seriously"doesn'tmean3weeksofantibiotics,no healthinsurancecoverageandhardtofinddoctors.Itis timetoseriouslygetserious. JamesGilbertLymediseasehasruinedmylifeaswell. HadtheguidelinesontreatingLymediseasebeenmore skewedtothediseaseitselfandnottoaforegone conclusion,mylifeandthelivesofmanypeoplelikely wouldhaveenduredsignificantlylesssuffering.Shame onthosewhocreatedandstandbysuchasinine guidelines,particularlyfornotgivingtheothersidethe propertimeofday.Maybeitisabouttimeto incorporatetherestoftheworld'sopiniononLymeinto yourguidelines.Afterall,Lymedidnotoriginatein Lyme,Connecticut;italreadyexistedinEuropea centuryearlierandhasbeendocumented. CindyHallClarkIwouldliketoseetheIDSAreevaluate itsguidelinesforthediagnosisofandtreatmentof LymeDiseaseandothertickborneillnessessina mannerthatwillaccuratelyreflecttheseriousnessof andthepropertreatmentofalltickbornediseases.Its membersarenotlivinguptotheHippocraticOathby puttingitsmembersneeds(greed)beforetheneedsof desperatelyillpatients.Shameonyou. ConnieJoHavensDonahooPutpoliticsaside.Don't dismisstreatmentsthatworkespeciallyforchronic (latestage)illness.Don'tdehumanizepatientsascrazy, malingering,orhypochondriacsbecauseyour recommendedshorttermantibioticprotocolisn't effectiveintreatingtheirsymptoms. EricAndersonIwouldliketheIDSAtotaketheirheads outofthesandregardingLyme."ThereisnoLymein Texas",yettheLoneStartick(foundalloverTexas)isa carrierofLyme.MyselfandmywifearebothCDC positive.IthankGodeverydaythatwecanget treatmentbecauseofthis.Iknowtherearethousands

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ofpatientsouttherethatarepositive,butshow negativeonthetests.IDSA,pleaserevampyour guidelinesandbeginworkingonbettertesting.Afew weeksofantibioticsisjustnotenough. JoshCutlerIaminnowayseekingpity. ButbecauseofthisdiseaseIam31andonthecouchas Itypeonmyphone.Ican'twatchmysondothethings kidsdo. Ican'tplaysportswithmysonorgoondateswithmy wife.Myfamilyseesmesickandhasnotasingleclue whattodoforme. SeebeforeIwassickIwasanuppermiddleclasstax payingcitizenwithhealthinsurance. Duetodocsignoranceandthejadedstandardssetby theIdsaandCDC.Iwentonandwaspassedaround tellingmeitwasinmyhead.NowIamtoobroketopay forqualityhealthcarethathealthinsurancewillnotpay for. SeeIambankrupt,notcauseofcrazycreditcard balancesbutbecauseofguidelinesthatwerenever reviewedbyanunbiasedsource. Youarenotonlyallowingpeopletobesickanddie.But causingalmostapovertylevelofsickformer functioningcitizens. Ilayonmycouchdyingbecauseyourefusetorevisit guidelinesandmaybethenpossiblymyinsurancewill coveritsoIcangetthetreatmentIneed. Areyougoingtohelpraisemysonifthisdiseasetakes mylife.Whataboutthefamiliesweleavebehindorthe stressthisepidemicputsontheeconomy. Themistakesyoumadehaveeffectedourcountryonan economicallevel.Openyoureyesplease.Havemercy onthosethataresuffering. ForgivebadgrammarandEnglish.Partialeyesand neuroissuesfromLyme. Hearourplea. KatHollandRinaldisomehonestyaboutLymeDisease, Bettertesting,moreeducationtodoctorsaboutLyme. AdmitChronicLymeisveryrealandisnotallinour heads,andletusdecidehowandwhatourtreatment

shouldbe.Toomanypeoplearesufferingweneedhelp andproperresearch. GeriPeoneTresvikPleaseopenyourmindstothe devastationofchronicLymeDisease!Honestlyreview ALLtheavailableresearchanddoadditionalresearch. ThenrewritetheguidelinessomanyofthosewithLD whoaredisabledcangettreated&resumetheir interruptedlives. HeatherDeryGallegosISECONDALLOFTHEABOVE:):) :) DonnaZukaitisFalcone@IDSAthankyouforthatlink. IviewedyourvideoonthechroinicLyme diagnosis/problems.Everyoneknowsthatthereare incorrectdxineveryfieldofmedicine,andIamquite surethatChronicLymeisnoexception.BUTDr.Paul Auwaerter'svideodoesnotaddressthepatientswho areCORRECTLYdiagnosedandyetaredeniedeffective treatment.He,ineffect,issayingthatbecauseSOME aremisdxandthereforetreatedinappropriatelythat ALLChronicLymePatientsmustsuffer.Whereisthe logicinthat?Healsofailstoacknowledgethepoor qualityofthetestingavailableandtheCDCsown statementswarningagainstusingbloodtestsand westernblotstoDIANGOSEthedisease...thataclinical diagnosisisnecessary.Pleaseexplainandrespond. DonnaZukaitisFalcone@IDSAyoucannotresponsibly maketheleapthatbecauseSOMEpatientsaremisdx withCLDthatCLDdoesNOTEXIST.Infact,bysaying thataren'tyousayingthatitDOESexist...it'sjustnot alwayscorrectlylabeled?Aren'tyoucontradicting yourself? JoAnnO'LingerTheIDSAneedstoputtogetheran entirelyDIFFERENTcommitteetoreevaluatethe guidelinesforthedxandtxofLyme...withoutDr. Wormserandfriends,thatis.Thisnewcommitteemust includeILADSdoctorsandacknowledgethevastbody ofmedicalresearchthatsupportstheexistenceoflong term,chronicLymedisease,whichishighlyresistantto abx.Itshouldbeobvioustoanyonewithabrainthatifa bloodtestshowsANYantibodiestoLymewhichare highlyspecifictothatorganism,thereMUSThavebeen exposuretoLymedisease.Thatcombinedwiththe appropriatesymptomsshouldbeenoughforaclinical dx. Also,thefactthattherearestrainsofLymediseaseout therewhichareNOTcurrentlybeingtestedforshould

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betakenintoaccount.AnegativeWesternBlotshould NEVERruleoutLymedisease!!Itisutterlyludicrousto insistupon5antibodiesoutofaparticular10forIgG and2outof3forIgM!ThosecriteriaensurethatMOST peoplewhoactuallyhaveLymewillNOTbeproperly diagnosed.Ofcourse,thehealthinsurancecompanies whofundDr.Wormser'sresearcharequitehappywith thecurrentstatusquo!TheIDSAcanchangethis horriblesituation,ifyouonlywillacknowledgethatbad scienceisatthebottomofthismessandgoodscience canfixit.Thankyouforlistening! MargaretBehrnsTrackthemyriadofhealthissuesthat ensueaftersomeoneisexposedtoTBIs.Documentthe differentpathsittakes,seethetrends,andget agressiveaboutprevention,diagnosisandtreatment. Thereisnotimetowait. ArliceHedgeGallagherStartactinglikescientistsand startseeingLymeforwhatitis.Ithinkit'sresponsible fortherapidincreaseindiabetesinthiscountry. SheriSouchIDSA:Itisobviousthatsomeoneisreading thesecommentsastheyaredeletingthe"personal attacks"andfoullanguage.Iunderstandwhyyouwould dothis,butIhopeyouwillalsounderstandhow desperateChronicLymeptsare.Manyaredebilitated andbecomingbankruptobtainingtreatmentthat shouldbecoveredbyinsurance.Areyoulisteningtoour stories?Willyouconductanhonestreviewofyour guidelines? JanConnellIwouldliketoseeyoustartmeaningful workonfindingacureforChronicLateStageLyme Diseaseandbegintreatingtheseafflictedpeopleas humanbeings. KaetheMitchellDearIDSA,thankyouforremindingus toavoidusingfoullanguage,etc.Iagree.Asforthe commentthatIDSAtakesLymediseaseveryseriously,I begtodiffer.Mytwochildren'spediatricianfollowed theIDSAguidelineswhenIinsistedtheybetestedfor Lymesincetheywerehavingjointpain,cognitiveissues, bonecrushingfatigue(couldnolongerdocheer leading,softball,track,soccer,andeventuallycoulddo littlebutlieonthecouch).Thepediatriciandidwhat shelearnedfromtheIDSA:sheorderedtheELISAtest. Theresults:negative.Ididn'tknowanythingthen,soof courseIbelievedmydearsweetchildrendidn'thave Lyme.Weshouldnothavetodoourownresearchto discoverthatbettertestinganddiagnosisand treatmentareavailable,usuallylongafterourloved

oneshavedeterioratedtowheretheirlivesare devastated.Wetrustourlocaldoctorstotakecareof us,andtheytrustIDSAtoprovidethemwiththelatest, mostaccurateguidelinesforthemtofollow.Pleasedo thisforthemandforus. EricaTaylorIwanttolikejustabouteverycommentI'm reading.IamsogratefulformyILADSdocanditscares medeeplytoimaginewhatIwouldhavedonewithout him.Ihavefriendswhoweresosickandcannow managetheirlives.Ifitwasn'tforthesedocswhosee Lymeandcoinfectionsasaclincialdiagnosis,and believeinCHRONICtickborneillnesses,manyofusin thiscommunitywouldbecripledordead.Ihopethat onedaytheIDSAandmedicalestablishmentthathas goneafterthesedocswillseethebloodontheirhands andadmittheirwrongdoing.Howcanyouallowpeople tosuffer?Openyoureyes,changeyourrules,andstart givingadamnaboutthehumanlivesprofoundly affectedbychronicLymeandcoinfections. SheriSouchIwouldliketopointoutaswell,IDSA,that therearemanycommentsonhereaboutpeoplewho hadthebull'seyerash,buttestednegativeandyet recovered(orimproved)withlongtermantibiotic treatment.Ifyouareinthebusinessofhealingpatients, thenyouneedtolistentothem.Ifyourguidelinesare notworking(asisobviouslythecase,)andifyouarean honestSociety,thenyoushouldchangethose guidelinestomatchreality.Whyhasthisnothappened? SheriSouchIDSA,youneedtoreassureChronicLyme sufferersthattheyarebeinglistenedto. LaurenGraceIcanonlyechothesentimentsthatothers havepostedhere.Ihavesufferedthedevastating effectsofLymediseasefor6years.Mostofmy20's weremiredinillness,doctorsappointmentsand medicaldebt.ChronicLymeexistsbutwedon'tneed toconvinceyouofthatyoualreadyknow.Whyelse wouldyou(TheIDSA)spend30plusyearsanduntold amountsofmoneyresearchinganddefendingthe positionthatLymediseaseisa"rare","hardtocatch" and"easytotreat"illness?Whywouldyou appointmentsomeofthebestandbrightestfromthe EIStooverseeallthingsLymeifLyme"isn'tabigdeal"? Noneedtoanswermyquestionsmyquestionsanswer themselves.Ipersonallydon'texpectyoutochange yourstanceanytimesoon,oreverforthatmatter.You willcontinueputoutflawedscientificstudiesand controlallthingsLyme.Butdoyouknowwhatyou

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cannotcontrol?ThevoiceandthespiritoftheLyme community.Wewillcontinuetofightevenwhenall seemslost.Weareovercomersandwewillprevail... JoshCutlerInfectiousDiseasesSocietyofAmericaI thoughyouwereencouragingopentalks. "IDSAwantstoencourageopendialog"Wouldn'tthat includeyourespondingtothepostswithsomething otherthanagenericresponse.Idon'tseeanyoneattack youoryourdoc'sjuststatingfacts. JohnCoughlinIDSApleaseunderstandallthese commentsarecomingfromalotofpainandsuffering.. Wehavepeerreviewedarticlesfromprofessionalslike yourselvesthatsaycongenitalLymehappens.Ibeen sicksince1999andhavetalkedtothousands,yes thousandsonlineandsomewithwholefamiliesinfected withLyme.SomeweretoldADHDandfoundBabesiain thekidsbloodfromtheLymetickbite,countlessother storiesicantellthatwouldfillupahundredpagesfull ofsickpatientslikemyselfthatfoundoutthehardway thatihaveLateStageLyme..Allweareaskingistolook andseeallthesemisdiagnosesandcomeupwitha betterplantoscreenthoseproperlytowhohaveallthe symptomsofLymeanddon'tjusttellCFS,Fibroetc.. whenitwasLymethatwaskillingmenotanythingelse.. thanksforlistening... AngieBristowIdon'thaveLyme,butRockyMountain SpottedFever.Youknow,theothertickborneillness thatdoesn'texistinthemedicalworld;onlyinmyhead! Pleasestoptreatinguslikeweaarecarzy!Wearenot crazy,butYOUaremakinguscrazywithyouroutdated, "caveman"likethinking,moneythristy,souless,sorry excuseforan...goaheadanddeleteme...weknowthe realdeal!Weknowthatyoudon'treallycare,b/cthe proofisoutforalltosee! SachikoYamaguchiPleaserealizethat28daysof antibioticsisnotenoughtocurechronicLymedisease. Mostpeopleneverseethetickbitesoitishardly caught"early."Ihavebeenonoralmedsandbicillin shotsfor8months,andnowanother7monthsofIV.I ampaying$$$sinceinsurancewillnotcoverthisdueto yourLymeguidelines.TheIVhasactuallyhelpedmeso muchtoregainstrength,energy,andmostofall mimimizemypainsymptoms.soitDOESwork.Mymain issuehoweveristheinaccuratetestingandweneedto notdismissthesefalsenegativesbecausetoomany patientsinthiscountryaregoingmisdiagnosedand haveapoorqualityoflife.

JoshCutlerEVERYONEtakemultiplescreenshotsof yourpostsandthisentirethread.Makenoteofwhat theydelete.Iamsurewithallthesepeoplewecan reachapaperormajornewsorgandsendthistothem. Prettycrazyallthesepeoplearebeingignoredand commentsbeingdeleted. PamelaRobertsonIDSAtakesLymeserious??IDSA won'ttakefowllanguagereally,thatswhatyouhaveto say?Peoplewouldn'thavetocurseiftheIDSAreallydid takeLymeserious.Ittruleyisacoverupandhowyou restatnightwellnotformetojudgeeveryoneanswers totheremaker.Maybeyoureternaldamnationwillbe chronicLymeoryoumayhavetowatchyourloveone withthiswhoknows.Letsnotworryaboutthecursing IDSAhowboutworryinboutaCURE!!!!!!! JoshCutlerGuystrytoletthisgoviral.Sharethelinkon yourpage,takescreenshotstellallyourfriendsto comeviewthis. HelenMetaxasRaserStoptheinsanitywithLyme Disease!InvolvedoctorsfromIDSAandILADStocome upwithrealanswers,moneyforresearch,and awareness.Thiskindofmasssufferingcannotbe allowedtocontinue! JoAnnO'LingerIamascientist,orrather,IWASa scientist....Lymediseasehastakenmycareeraway fromme.I'minbedabout80%ofthetimenow.Please listentous!!!Readthesecommentsandtakeus seriously! MartiAddisGoforthIwouldlikeananswer,ora statementsomeonefromtheIDSAwithenough couragetosay"Yes,LymeDiseaseisReal,fromthis momentonWewilltakethisSeriously"...Thephrase "Youwon'tGetittillYouGetit"issoveryReal.Iwantto walkintoaDoctor'sofficeandreceivealookof acceptance,IprayDoctor'sreceiveEducationinLyme Disease,thisshouldbepartoftheirtrainingasbeing trainedin"Bedside"manner.Iambeyondtiredoftrying toexplaineverythingtoothersbecauseoftheIDSA rulesandguidelines.Treatingamazinghumansoulsasif wearenotworthfightingfor.Iwasworkingina juveniledetentioncentergatheringwoodtobuildafire tomakes'mores.Iwasnotthinkingatthatmomentall ofthiswouldbepartofmyworld,Iwastryingto enlightenchildren... AshleyGrellaTheREALtruthaboutChronicLyme disease,whichhasrobbedmeofseveralyearsoflife.

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AndreaMcLainFennellTheinformationyou(IDSA) sitedaboveisexactlytheinformationwehavea problemwith.ThereareMANYintelligentpeoplehere. Manydoctors,researchers,microbiologistsetc.have thescientificevidenceyousaydoesnotexist.Takingit seriouslywouldmeanjoiningforceswiththe InternationalLymeandAssociatedDiseasesfoundation. EveninyourvideoonChronicLymethereisnotalkof thebabiesbeingbornandtestingpositiveforLyme.You offernoexplanation,noalternativesandNOhelp.This isnottakinganythingseriously. MeredithLodgeWhenIpresentedwithLateStage Lyme,thedoctortoldmehecouldtellbylookingatme IhadnootherTickBornDiseases.Isthishowyoutrain ourdoctors?Herefusedtorunabloodtestforother tickbornediseases.Itestedpositivewhentheblood wasrunbyanotherdoctor.Somethingneedstochange andfast. MikeHitchIwouldliketoseeamuchbetter acceptanceofchronicLymeandothertickborne illinessesbyIDSAandtheAMAandtheCDC. "Mainstream"medicine,includingavastmajorityofID doctorsarewaaaaaybehindontheiracceptanceand understandingofthispandemic.Openyoureyesand acceptthefactthatchronicLymeandTBIsexistand thattheremustbearevisioninhowtheyaretreated. SachikoYamaguchiLymediseaseISanepidemicand needstobeaddressedateveryconference.Iwas disappointedtoseeitwasnotontheagendaattheOct 2010BostonIDSAconference. PamelaRockeAcknowledgethatLymecanbechronic; thatitismorecommonthannotthatonegetatickbite withoutthebullseyeorevenknowingthey'vebeenbit; thatsymptomscantakemonths,yearsordecadesto showupinforce;thatsymptomsaremuchmorevaried thanyounowdescribe;andmostimportantlythatthe sametickbitethattransfersLymeinfectionalso*very* oftentransfersotherinfectionsaswell!!!Itis unconscionablethatIamforcedtospendtensof thousandsofdollarseveryyearoutofpockettobe treatedforachronichealthproblemjustbecausefor profitinsurancecompanies,byavoidingcoverage, stymieresearchintocreatingcompleteandspeedy cures!Ultimately,thecurrentstatusquoisaterrible drainonourcountry'seconomy,costingeveryonemuch moremoneythaninsurancecompaniessavebynot coveringus,anddrugcompaniessavebynot

researchinganddevelopingcuresandbetter treatments. RussellHuxtableAsanotherscientist.IknowwhenI lookat60oddtrialsandseearecoveryrateofaround 70%withshorttermantibiotics,thatwhentheIDSA saysitis9799%theyeitherdon'townacalculatoror therearesome'antiscience'agendasoccuringwith thisOrganisation. KonnichiwaOnnachanWhatdoIwanttoseefromIDSA inthenewyear?Howaboutmoreresearchdoneon chronicLymeandaLOTlesssweepingundertherugfor thoseofuswhogothroughpurehellwithsuffering?I willtellyouthatIwillNOTsithereandallowthis diseasetotakemylife,withorwithoutyourhelp! Eithergetonboardorgetoutoftheway.Thisisa terribleepidemicandthe"mainstreammedicine"needs toopentheireyes! JeanieHinely"Whatwouldyouliketoseefromyour societyinthecomingyear?" aheadtoheadScientific&Publicizedandtelevised debatebetweenIDSAandILADSonLymedisease. IDSAareyouwillingtogothere?Orwillyoujustdelete thiscommentalso? CourtneyLynnAreyoulisteningIDSA?NOWisthetime toaddresstheseissues.Youcantburyyourheadsinthe sandanylonger! JulieSearcyAndersonThanksforasking.Iwould seriouslyliketoseetheIDSAstopignoringtheelephant intheroom.ChronicLymeDiseaseDOESexistand thousandsofpeoplearesuffering.Iwastoldbyan InfectiousDiseasephysicianthatChronicLymewasa "scam",thatLymedoesn'texistinTexasandthatIhad "something",butshedidn'tknowwhat.Shereasoned awaymyimprovementwithlongtermantibiotics(from anotherdoctor),statingthatantibioticswerejustan expensiveAdvil.Really?Ihavetotraveloutofstatefor treatment.Publicknowledgeandunderstandingof ChronicLymeismakinggreatprogressrecently,thank God,duetopublicoutcryandtirelesseffortsofmany similartothehistoryofHIV.Iadvisethatyougetyour physicianswiththeprogram,oratleastsuggestthey acquiremoreliabilityinsurance,becauseIpredict multipleclassactionlawsuitsarisingintheverynear futureforignoring,mistreating,cripplingand/orkilling

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theirpatients.Oh,andaccuratetesting,thatisn'tfrom the70s,wouldbeagreatstart.Unbelievable. AnnetteSharpIDSA,Pleasehaveamoreopenmind abouttickbornediseasesandrecognizethatitCAN remaininthebodyafterashortroundofantibiotics. Example:Iwasinfectedandstartedtreatmentabout7 8weeksaftertickbites.Iwasstillsickasadogafter6 weeksofantibiotictherapy!Ittook4monthsbeforeI waswellenoughtostopantibiotics,yetISTILLhave elbow/kneepain,letterreversalissues,floatersand lip/eyetwitches.Pleaseacknowledgethatthereare unknownfactorstotheillnessthatyoumaypossiblybe wrongabout.Thankyou. JeanieHinelyIbetaterrabyteistoomuchandthatit willtakelessthanaGigofScreenshotsofdeleted commentsatthehandsofIDSAtoportraythetrue natureofIDSA'sattitudetowardsLymeDisease. MiralinaStewartPleasechangeyourguidelines,chronic Lymediseaseisaveryrealandseriousillness.More researchneedstobedoneandbettertreatmentsmade available! LeylaNakisbendiGetoveryourselves!Youarejust wrong! DinaBrisentineMcAweeneyIwouldliketoseeafew thingsansweredforme.... 1.HowcanItestCDCPositiveforBb,Bart,Babs, MycoplasmaPneumoniae,ChlamydiaPneumoniae, MycoplasmaFermentans&reactivatedHHV6butbe toldbynonLLMDsthatthereisnothingwrongwith me? 2.HowdidIgofrombeinginthemilitary,runninga6 minutemile,tobeingbedridden? 3.JustexactlywhoamItryingtoget"ATTENTION" from? 4.Howdoesapersonput60lbs.onin3months,then lose50lbs.in7weeks? 5.HowcanaERDr.tellmehe/shecan'tfindanything wrongwithme,Ijustneedpsychiatrichelp,whenIhave abelownormalWBC,depletedneutrophils,magnesium &potassium,afeverof103,belownormalTSH(hyper) eventhoughI'moverweight&aBPof85/51,onlytobe toldIneedanxietymedicine. 6.HowcanmyLLMD,inonevisit,tellmebydoingan ultrasoundthatIhaveIntestinalParasitesbut18non LLMDscouldn't,including2IDDrs?Doyouhaveany ideahowdisgustingitistovomitupworms&theireggs outofyourmouth!?!?

7.Whyisitmy2dogsaretreatedwithmorerespect& compassionattheirfreakin'Vet,thanIamatmyPCP office? 8.HowcomemydogsVetcanrunaLD&Co.testathis office&getanaccurateresultin10minutesbutPCP's (notevenLLMDs)can't? 9.WhyisitthataftermonthsofpulsingABXs& Antivirals(alongwithseveralsupplements)Iamfinally startingtodo/feelbetter,Imean,consideringthefact thatthereisnothingwrongwithme? 10.Andlastbutnotleast,howcantheIDSA&theDrs. whofollowtheirguidelinessleepatnightknowingthat asimple,$10bottleofABXcanrelievesomuchpain& sufferinginafellow,humanbeing?Doyouallhaveany compassionatall?!? MeoDoyneEverythingaswrittenabove.Youreally needtohelpuspatientsoutwithbettereducationand guidelines.Peoplearesickanddyingwithoutproper careandattentionbecauseoftheguidelinesyoustuck uswithyearsago... ThomasLeeDunlapclinicaltrialscomprisedoflong termand/orchronictestsubjects DebbyMatthewsWOW!!!!IDSA.....Youaskeda question.....Howdoyoufeelabouttheresponses??? Areyoureallylistening????DOYOUHEARTHESE PEOPLE??????????REALPeoplewhoarereallysick!!!!!! Actionspeakslouderthanwords....Howaboutsome ACTION!!!!!! DoloresClaessonHelloIDSA!Lymediseaseissucha misnomerandshouldinsteadbecalledamultifactorial illnessencompassingbacterial,protozoal,fungal, parasitical,viralinfectionsandshouldbeanalyzedto seewhatthetoxicsoupofpathogenseachandevery oneofushasgottenfromthesezoonoticvectors.The averageIDSAphysicianiscluelessastothesepathogens andwewouldbebetterservedbyseeingourlocal veterinarians!Somethingneedstobedonetoeducate thesephysiciansifthatisevenpossible?Mostdonot seemtobeabletoread/comprehendresearch. KarenSchlosbergPleaseacknowledgethelongterm problemsthatmanyLymeDiseasepatientsexperience, andCHANGEYOURPROTOCOL.Whetherit'sChronic LymeorpostLyme,manyofusarestillaffectedLyme andhaveaveryhardtimefindingANDaffordingquality healthcare.

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HallieRichwineLet'sgettweetingmakethisa JenniferBaysToombsWow,lotsofpostshere.Wonder trendingtopic! iftheIDSAgetsthismanypostsonanyOTHERissue??? KathleenO'ConnellI'vecontactedahighprofile DoloresClaessonGuidelines?whatguidelines?No attorney,ErinBrokovitchafewtimeswithregardto IDSAdocwithabrainlooksatthem!!!! IDSA'scontinuingdenialthatChronicorLateStage Lymediseaseisadevistatingmultifaceteddisease.I PaulineYuhasMarianoI'dlikeitifyou'dgetrealand thinkIwillcopythisthreadandsenditalongto updateyourguidelinessotheinsurancecompanies wouldstopusingthemasanexcusetodenycoverage her..Keeptheresponsescomingandsendthislinkto yourlocalcongresspersonaswell. fortreatment!!Everythingyouhavedonehashurt thousandsofpeoplesufferingwithChronicLymeand TimothyGreyCOMPLETE yetyoucontinuetodenythe rescindingofcurrent existence.Youaredoctorswho TimothyGrey COMPLETErescindingof LymeDiseasediagnostic tookanoathtohelppatientsand currentLymeDiseasediagnosticand andtreatment yeteverythingyouhavedonehas treatmentguidelines.Thecurrent continuedtomakeourlivesmore guidelines.Thecurrent guidelinesareinnowaydesignedto difficult.Whereisyour guidelinesareinnoway compassionandwillingnessto designedtobenefit benefitexistingandfuturepatients. careforpatients?Areyouallso existingandfuture Furthermoretheguidelinesare intentonjustmakingmoneythat patients.Furthermore constructedinamannerthatallows youhaveforgottenwhyyou theguidelinesare becamedoctorsinthefirstplace? constructedinamanner patientstobemisdiagnosedinafatal thatallowspatientstobe mannerAmyotrophiclateralsclerosis, misdiagnosedinafatal InfectiouslyOptimisticLastyear, which there is no cure, only palliative care mannerAmyotrophic anumberofwriterscame untildeath.Thisisnotonlyinhumane, togethertowriteaseriesentitled lateralsclerosis,which "MyLymeDiseaseisNotThe thereisnocure,only immoralandoutsidetheboundsofthe IDSALymeDisease".Personally,I palliativecareuntil Hippocraticoathbutsoonwillbe believethatstoriesandthe death.Thisisnotonly prosecutableasnegligenthomicide. accountofourexperiencesspeak inhumane,immoraland louderthanangerand outsidetheboundsof theHippocraticoathbut Theshameandnegativepublicitythiswill frustration.Eachstoryshared illustratedthepain,suffering,and soonwillbeprosecutable bringtotheIDSAcanbecompletely debilitationofthosewhoare asnegligenthomicide. avoidedbyareviewoftheactionsofthe strugglingwithLymeDisease.Yet, eachstoryalsoshowsthe Theshameandnegative fewthathavenegotiatedunderhanded courage, strength,andendurance publicitythiswillbringto backroomdealstoattainpatentsand requiredtokeepfighting.I theIDSAcanbe pushvaccinesthroughFDAapproval. believethatthisisafarmore completelyavoidedbya effectivewaytohonorthetruth, reviewoftheactionsof ratherthancommentingoutof thefewthathave Don'tallowtheactions,ofafewpeople, frustrationandire.Pleaseseethe negotiatedunderhanded destroythereputationoftheIDSA. bottomofthefollowingarticleto backroomdealstoattain findadditionalstoriesandposts. patentsandpush TimGrey, vaccinesthroughFDA BirgitJrschikBusbachAllow approval. Producer/Director,UndertheEightball yourLymeGuidelinesmore Don'tallowtheactions, flexibility,dependingonthe ofafewpeople,destroy patient'sresponsetotherapeutic thereputationofthe interventionnotbasedonastrict28daysofabxis IDSA. enoughscheme! Primumnonnocere!

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GreetingsfromanotherchronicLymesuffererfrom Germany! YouknowthatmostoftheMDsworldwidediagnose andtreatLDbasedonIDSARecommendations,sodo Germanphysicians. YvonneForeyJustoneansweroffyouguyswouldbe good..SURELYyoucantignoreallthesepeople pleading.....ANSWERUS! ValarieMurphy Somany responsessofar,allbasically sayingthesamething.IDSA,whatyoucandoforusisto "getit."Someonewhonevergotdiagnosedand treated,orinadequatelytreated,mayverywellbe sufferingsomethingbeyondthe"achesandpains"of aging. Iamshockedthatyoudon'tunderstandhowLymeand coinfectionsderegulatesystemsheart,endocrine, joint,brain,etc.Perhapsifyoustudiedthat,youwould getintouchwithappropriatetreatment. TracyPolandMoreeducationforalltheDr'swhoare turningablindeyetoallthesickpeoplecomingthru theiroffice's,cryingandpleadingforhelp,andyetall theygetarepills,misdiagnoses,andturnedawayafter yearsandyearsofsickness,onlytobetoldtheirLyme testwasnegativeiftheycaneventalktheirDrinto givingthemone.Ialsowanttoseethetestingperfected sotheDr'scanstarttakingusserious.....itwouldsave insurancecompaniesmillionsofdollarstoget diagnosedtobeginwithandsaveLymesufferersyears ofillhealth,andunnecessarygrief........ StephanieHanksEdelenPleasestarttakingLyme diseaseseriously.Myfriendiscurrentlytakingher daughter,whohasLyme,twostatesawayfor treatment.Peoplehavehadtorefinancetheirhomes, get2ndjobs,andtraveloutofstatetogetdecent treatmentforLyme.Iwaswiththematadoctor appointmentintheirhomestate,thatdoctorbasically toldherthatshewasdoingthewrongthingbyseeking medicaltreatmentforLymefromadoctor,who recognizesLyme,inanotherstate.Itwasobviousthat hedidn'tbelieveLymewasreal.Heevenliedabout goingoutandwashinghishands(withasinktwofeet away)sothathecouldlookuptheLymedoctoronthe computer.Wecouldseehiscomputerscreenfrom wherewesatwaiting.Thisdiseasehastakentheactive lifeawayfromabeautiful17yearoldgirl.Shecanno longertakepartinallthechurchandschoolactivities

thatsheusedtobeinvolvedin.Iwasshockedtofind outthatitwassodifficulttogettreatmentforthis disease.Pleasedosomethingsoontohelpthesepeople thataresufferingfromLyme. DebbyMatthewsApparently....Aswesuspect anyways...TheyareNOTlistening!!!Howabout whoeverissittingtheredeletingposts&blocking peopleSPEAK....Addresssomeoftheseconcerns....I'M LISTENING!!!!! MichaelParentThankyoufortakingthetimetoaskthis question.Myconcern,likesomanyothersisthatof dealingwithtickborneinfectiousdiseases.Clearly differingpointsofviewonwhetherornotpersistent infectionwithborreliaburgdorferiremainscontentious. Myissuehoweverisnotascontentious,butdoesstill involvetickborneinfectiousdisease.Clearlythe scientificcommunityhascontinuedtofindnew pathogensasissoevidentlatelywithnew discoveries,someofwhichmayberesponsibleforwhy patientswithongoingillnessaftertreatingLyme Diseasemaybeoneofthefactorsthatdividesthe medicalcommunityfrompatientadvocacygroups. Itisimportanttoconsiderinvestigatingthestudyof ticksandtosearchforwhetherornotinfectious diseasesmayhavedevelopedasymbioticrelationship, havingevolvedwithinticksoversuchanextensivetime period,whichmayallowa"combination"comorbid illnesstodevelopleadingtopersistentillnesspost antibiotics.Repeat:Weneedstudiesonpatientswith multipletickborndiseases,toseeifthepattern divergesawayfromatypicalpicturetothatofamuch morecomplexordifficulttotreatpattern.So,Ihope theIDSAwillencourageandsupportinvestigationin thisarea. SusanSwinsonWilliamsDitto...stopmakingLyme Diseaseaboutpoliticsandputthechoicesbackintothe handsofthepatientswhosufferanddoctorsthattreat them. PatriciaHetrick3years,8monthsand2weeksof aggressivemultiantibiotictreatmenthasfinallybrought mebacktolife.Thistreatmentisindirectviolationof theIDSAtreatmentguidelinesbutwithoutseeking furthertreatmentIknowIwouldnotbehere.Iwould liketoseearespectedorganizationliketheIDSAearn thatrespectbymakingalloftheinformationavailable todoctorsandpatientssothatmorepeoplewouldhave

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theopportunitytodecideonacourseoftreatmentthat couldsavetheirlives. MichelleMurphyIhavesufferedsinceapprox.1997till presentwithchronicLymediseaseandpersistant babesiaduncani.Inthebeginningnoonebelievedme. In2002,Iwastx'dx3yrswithoral,ivandinjectable abx's.someimprovementbutnot"cured".Inowam disabled.IwasanRnbutcannolongerfunctioninthat capacity.IamPCRpos.forB.burgdorforiandposfor bab.d.andamreceivingtreatmentbyanLLMD.Ihave totraveloutofstateandpayoutofpocketfor treatment.ThankstotheIDSAguidelinesnoDr.will treatCLDhere.IhavelateneurologicalLymewithmild encephalopathy. Ihavedonealotofmyownpeerreviewedmedical researchandhavefoundthingstobeverydifferent fromwhatyourguidelinesaresaying.Whydoyouclose youreyestothisresearch?Whydoyouchoosenotto believeus?Areabxaddictive?NO.DoIlikebeingon them?NO.ButIneedtogetbetter.Kidswithacneget moreeffectivetreatmentthanLymepts."Whereisthe deathtollfromacne?Whydon'twehold dermatologiststo2weeksoftetracycline?Andif infectionsaresoeasily"cured"byabx,whyisn'ta simpleskininfectionlikepimples"cured"in2weeks? Surelyanintracellularinfectionofthebrainorother organsandtissuesaremoreseriousthanacne.Sowhy arewebeingtoldthat28daysofanabxisallaLymeor Lymeencephalitispt.needs?"Icouldgoonandonand on....... CarrieGarmanmoneyandgreedshouldnthave anythingtodowithtreatingapatientthatisveryill!!! readthebible,greedandmoney=EVIL KristinAhlesIwantmoresensitive&accuratetesting ASAP!Toomanysickpeopleareslippingthroughthe cracks.Trustmeifthereweren'tsomanyfalse negatives,you'dhavethousandsofpeoplecommenting onthisthread,notmerelyhundreds.Secondly acknowledgethatChronicLymeDOESexist! DanThomsSomewhereaninternjustgotfiredfor postingthisstatus. GayleLinkIwasmisdiagnosedfor15+years:arthritis, blepheritis,chronicfatiguesyndrome,fibromyalgia,and ofcoursethelookfromdoctorsthatIwasmakingitall up.Iwentfrombeinganathlete,lifeofthepartyandall aroundhighenergyhumantoalumponthecouch.

FinallyanotherLymepatientrecognizedmysymptoms andencouragedmetogetproperlytested.Ihadnot onlyLymedisease,butalsobabesiaandbartonella alongwith4chronicviralinfections.Iamthankful everydayforILADSdoctorswhosavedmylife.After beingsickforyears,Iamlivingmylifeagainandrunning ahyperbaricclinicsoIcanhelpothers.Pleasestop denyingthatchronicLymediseaseexistsandspend youreffortsonbettertesting,diagnosisandtreatment! DebbieThompsonFirst,donomoreharm. KarlaLehtonenMydaughterwasallowedtodevelop latestagetreatmentresistantchronicLymedisease confoundedbymultiplecoinfections,byIDspecialists andprimarycaredoctorswhosworebyandbelievedin theIDSALymetreatmentguidelines.Mydaughterwho hasnowhadtwolivewithchronicillnessforyears,was cryingthismorningbecauseshecantthinkclearly, cantwrite,anddoesntfeellikeshewillbeabletoback toevenparttimeschoolattendancenowthather Christmasvacationisover. FromtheIDSA,Idlikeanadmissionofnegligenceanda financialsettlementtopayformydaughtersongoing medicalexpensesandpoorofqualityoflife.Stopthe persecutionofILADStreatingphysiciansandinclude theminthedesignandimplementationofnewclinical trials.Supportclinicaltrialsexploringpromising alternativetreatmentssuchashyperthermiaforchronic Lymepatients.Supportthedevelopmentanduseof betterdiagnostictests. IwouldliketheIDSAtomakeanhonestassessmentof theirLymetreatmentguidelines,includingallscientific pointsofviewandthatoftheILADSphysiciansmanyof whomhavetheexperienceoftreatingthousandsof chronicLymepatients. Someofthekeypointsthatneedtobereexaminesin thecurrenttreatmentguidelinesinclude:recognitionof theseverityofsymptomsinchronicLymepatients, valuationofpatientvaluesandneedforqualityoflifein treatmentdecisions,eliminationofstrong recommendationsthatarenotsupportedbystrong science,allowingclinicaldiscretioninbasinglengthof treatmentonclinicalresponseratherthansetperiods oftime,recognitionthatlongtermantibiotictreatment maynecessaryformanypatientswithchronicLyme disease,anhonestassessmentofthehighfalse negativeratesofthetwotiertestingregimeninall stagesoftheillness,acceptanceofsubjectivesymptoms

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diseasethatyousaydoesnotexist.Wearehousebound inthedefinitionofthedisease,recognitionofthe anddesperateforrealhelp. growingbodyofevidencesupportingpersistenceof infectionaftershorttermantibiotictreatment,ahighly DoloresClaessonHeyifyouwantresearchpleasefriend criticallookattheactualfailureratesinexistingstudies meonFacebook. advocatingshorttermantibioticuse,recognitionofthe increasingprevalenceofLymeencephalopathy,aswell CarrieDyerI'dliketoseeDoctorsallowedtotreatLyme asthedevelopmentofeffectivediagnosisand treatmentregimesforencephalopathy. Diseaseinaccordancewiththeirknowledge...notbased onwhattheISDAdeemsappropriate.Myhusbandhas CourtneyLynnPleaseeveryonestart"liking"asmany suffered(and,inturn,wehavesuffered)withLyme commentsaspossible.Thisgivesfacebookmore Diseaseforover17years.DONOTtellmethatchronic attentiontothispostiftheyseeitsblowingupfast. Lymedoesn'texist.DONOTtellmethatLymecanbe Thanks. treatedwithashortdoseoforalantibiotics.DONOT shuntherapidlygrowingcommunityofLymeDisease sufferers. FaithWilliamsonIsignorancetrulybliss,IDSA?Certainly mustbeasIseenotone JoyJustJoy IwouldliketoseetheIDSA SallyEggerPleasetakethe singleresponsetoour400+ comments.Hmmm...karma timetoreadRitchie abolishtheircurrentflawedandcorrupt hasafunnywayofcatching Shoemaker'sworkonChronic Lymediseaseguidelines.Howcansucha upwithyou.... Lyme.Somanywiththis smallcoregroupcarrysomuchweight? conditionaresufferingdueto Somethingisverywrongwiththispicture theirhereditaryinabilityto LouisCiavolellaPleasetake anotherlookatthetesting eliminatetheneurotoxic andthisneedstobeinvestigatedatthe andtreatmentguidelinesfor productsproducedbyLyme highest level! The level of human LymeDisease.Manypeople disease.Everypersonwith sufferingthattheIDSAhascausedis chronicLymeshouldtest aresufferingbecauseofthe theirhomeformoldasit lackofadequatediagnosis astronomicalandtheyneedtobeheld couldbepreventingtheir andtreatment. accountable.NeverinmylifewouldI recovery. haveeverthoughtI'dbeinabattlefor DawnMarieKeanWilson mylifeupagainstatiradeofinjustice. DoloresClaessonIDSAthisis Thankyouforpostingthis questiontothepublic.Ihave howdialogueisspelledand LookatALLoftheseposts!Areyou LymeDiseasethatwent thereinliestheproblem!! proud?Youshouldhangyourheadsin un/misdiagnosedforabouta shame. decadedueto ShellyBachmanGarrisonYou 1)Lackofknowledgeand needtorecognizeLYMEasan educationamongthemany JoyMandrellBurdge,Testifiedonbehalf infectiousdiseaseand physiciansIsawand educatethepublicand of PA HouseBill 272, August 2011 2)LackofELISAandPCR insurancecompaniesso peoplecanreceiveproper testingaccuracy.Itwasonly treatment.Thesepeopleare afterajudiciousspecialist suffering,andNOTfrommentalillnessasmanydoctors testedmeforBabesiaduncani,whichcameback wouldliketobelieve. positive,thatLymewassuspected. HallieRichwine119screenshotstothispointofthe Iwouldkindlybutfirmlyimploreyoutorevisityour thread. LymeDiseaseGuidelines,asbothdiagnosticand treatmentsuggestionstrulyneedrevision. RobCotterTherehastobeamoralimperativetodeal withChronicLymeandcoinfections.Anhonest KathrynRichardsLYMEstolethelivesofmyselfand5 evaluationthatavoidsBigPharmaandinsuranceprofit children,sixofustakingmedsTHATarehelping,costing motives.LymeiscostingthiscountryTrillionsinlost meseveralthousandsofdollarsoutofpocketfora

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productivitybutmoreimportantlyitscostingthelivesof allfamilymembers. SallyMarascoI'dliketoseeasafe,effectiveLyme diseasevaccineforhumansanddogs. PamelaRockeOh,onemorethingpleaseremoveall conflictofinterestassociationsamongstyourboardof directors.Youallmayhavethemostwonderfulof intentions,buthavingfinancialorothertiestothe insuranceanddrugcompaniescreatesthatslippery slopeweallfear,theonewearehalfwaydownbefore werealizeit.Andatbest,itcreatestheappearanceofa conflictofinterestthatpreventsthegroupfrombeing effective. ThoraGravesTheInfectiousDiseasesSocietyneedsto acceptchronicLymediseaselikeanyotherchronic InfectiousDisease. KathrynRichardsmytickbitewasin1976andIwas diagnosedthisyear.5kidswithproblemssincebirth havealltestedpositiveandareslowlyimprovingwith treatment.WEARENOTMAKINGTHISUP35yearsisa longtimetobesickwithsomethingabxcouldhave helpedandsavedallmychildrenfrominfectionif properlydiagnosedandtreatedwhenithappened. TherearethousandsofstoriesJUSTlikethis.Itisan epidemicbutwearetootiredandsicktoraisehell,yet. DebbyMatthewsMylastpost....DELETED!!!!Seriously? Isthishowyoudothings????....Hmmmm....Wasteof time...... DeniseStGermainhttp://whatisLyme.com/restin peace/ RestInPeace whatisLyme.com PeoplewhohavediedofLymeDisease DonnaZukaitisFalconehttp://whatisLyme.com/restin peace/ DawnE.PerryIknowmanypeoplewhohavesuffered fromLymeoraresufferingstillfromit,yetitisbarely recognized.Lymediseaseneedstobethe#1PASSION ofIDSA. DebbyMatthewsNobodywiththeIDSAis listening....Theyhavetheirownagenda.....Ithasnothing todowithanyofusandourdiseaseorconcerns!

JoyJustJoyIwouldliketoseetheIDSAabolishtheir currentflawedandcorruptLymediseaseguidelines. Howcansuchasmallcoregroupcarrysomuchweight? Somethingisverywrongwiththispictureandthis needstobeinvestigatedatthehighestlevel!Thelevel ofhumansufferingthattheIDSAhascausedis astronomicalandtheyneedtobeheldaccountable. NeverinmylifewouldIhaveeverthoughtI'dbeina battleformylifeupagainstatiradeofinjustice.Lookat ALLoftheseposts!Areyouproud?Youshouldhang yourheadsinshame. MandyKnowlesLetthedoctorstreathowtheythinkis thebestforourkids...andpayforthetreatments needed!!!!! KimberlyCerrudoLosetheconflictsofinterest.Open youreyestothesciencethatChronicLymeexists. Recognizetheseriousnessofthediseaseandepidemic. Yourcurrentguidelinesarecausingirreparabledamage topatients.Livesareforeverchanged,somelost becauseofthem.Pleaserememberyouroathtodono harm. MaryAnnMazzarella6yrsw/Lymeandwastedalot oftimeandmoneyonDr'sthatdon'thaveaclue.The worstwastheInfectiousDiseasedr,whichshouldhave beenthebest.Yourguidelinesareoutdatedand incorrect.Dr'sthatcare,understandandtreatpatients withchronicLymeshouldbewritingtheguidleines alongwithpeoplewhohaveit.Pleasedosomething aboutthis,weneedyourhelp. AdrienneLRitchieAresponsetoanyoftheserequests wouldbemiraculousinandofitself! AshleyEduvigenAddressLymediseaseandchronic Lymedisease,stopdenyingtreatmentandinsurance coverage,andstartsavinglives! ValarieMurphy[Hundredsof]commentssofar,and theyallsaybasicallythesamething. ValarieMurphyOh,anotherthingstopyour participantsfromtestifyingagainstLymedocs.Your participationinthatpersecutionmakesIDSAlookvery, verybad. ElaineGarfieldgetthetruthoutabouthowseverethis illnessis.Peoplearesodebilitatedandaredyingwhile anotheragendaistakingprecedence.Humanlifeisthe mostimportantagendatherecanbe.Pleaseremember

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howmanyillnesseswerejudgedwronglyandpeople arestilldyingbecauseofthearroganceofthemedical establishment.Pasttimetosetegoaside.Dotheright andhumanething. CatherineCollinsWellIDSA,youdidask.Nowcanyou listen?Justhowaccountableareyoutothepeopleof yourcountryandtherestoftheworldwhoremainsick becauseofyourflawedtickbornediseasesguidelines? Medicineandsciencearenotstatic,hypothesesmove withresearchandexperience.Listenandlearnfromall thesepatientexperiences.Canyour"opinions"ever reflectthis? RobCloutierOpenyoureyestotheFACTthatthereare alotofpeopleouttheresufferingfromaconditionthat onlyahandfulofyourmembers(theLymeguidelines board)aretryingtodenyexistsbecauseinsurance companiespaythemto.Someday,itmaynotbetoday ortomorrow,butenoughpeoplearegoingtobesick thatthereWILLbenationalclassactionlawsuitsagainst thatpanelandthelongeryoustayassociatedwiththat panel,themoreyourorganizationwillbelegallyinhot waterforcomplicitytotheterriblecrimestheIDSA Lymepanelhascommitted.Anyonewithhalfabrainat theheadoftheIDSAwouldcutoffanyconnectionto the"doctors"ontheboard(whoshouldbeinjail,btw) fromtheIDSAsimplyonthemeansoffinancialandPR senseandthat'snoteventouchingonthemoralside ofit.Whywouldyoujeopardizeyourorganizationfor thesakeof56corruptindividualswhoaremaking thousandsofpeoplesuffer? Haveyounotnoticedthatyourorganizationis becomingmoreandmorehotlydebatedinstate legislatures?TheprovenlegalactionbythestateofCT's attorneyGeneralthatfiscalindiscretionwascommitted bytheLymeboard?Thattherearewidelyrespected documentariesairingonPBSthatmakesyour organizationlookterrible?DoyounothaveANY politicalorPRsense?Cutthemfree!Theycan'thide behindtheIDSAforever.Thinkabouttherisingratesof Lymeeveryyear.Thousandsmorearebeinghurtby yourpaneleveryyear,includingsomeverypowerful people.Ticksdon'tdiscriminatebetweenthehomeless orSenators...Youcannotdenyknowinghowthisis goingtoendupinalitigiousenvironment,andthe sooneryoudumpyourLymepanel,thebetterforyou. KimoBaileyThesufferingformeandyouallhasbeen justcrazy,itseverydayeverynight24/7/365.How cantheDr.snotseethis?ProfessionalBLINDERS?

BarbaraL.BakerIntelligencefreedfromgreed,freed frombigpharma,freedfrominsurancecompany lobbyist.Intelligenceandcompassion.Twoqualities completelymissingfromLymereporting. VictoriaWilguessI'monly18.Iwas13whenIgotsick, but15whenIgotreallysick.Fromwhat?LymeDisease andcoinfections.I'vebeenbedridden,missedhigh school,andhadtotravelacrosstheCOUNTRYtofinda doctorthatwilleventreatme.Thisyear,Iwantforyou tohelpme.Iwanttonotspendanotherdayhookedup toIVs.Thisdiseasehastaken2organsfromme,caused metogototheERover50times,causedmetogeta PICClineandportforIVs,hasaffectedmybrain,and hasaffectedeverysingleorgan,bone,andjoint.AndI'm only18.Iwanttobeabletogotocollegeandbecomea nursetohelpothers.Sothisyear,Ijustwantyouto helpme.ButIwantyoutoknowthateventhoughLyme istakingalotfromme,Iwon'tgiveuporletitstopme. Ijustneedyoutotellmethisyear.Idon'twanttobe sickanymore.Idon'twanttoseeanymorepeopleget Lyme.ThatiswhatIwantthisyear. NeilMcNamaraIhearyouaredeletingpostsfromLyme suffererslikemyself.Lookatalloftheseposts!!You mustchangeyourLymeguidelinesastheyarecausing thesufferingandlossoflifeforthousandsaroundthe world.ILADSaretheauthorityonLymeandtickbourne diseasetreatment.ChronicLymeismakingafooloutof theIDSA!!Thetruthwillprevail,andIonlyhopeyour boardmembersareheldaccountableforthisgenocide theyhaveoverseen.Idon'tknowhowanyofyoucan sleepatnight. CathyGlennWouldliketoseethehorribletruthabout thisdiseasetold.Wouldliketoseedoctorstruly educatedonhowtodiagnoseandtreatcorrectly. Wouldliketoseeinsurancepayfortreatmentjustlike anyotherdisease.Wouldlikeresearch$$to. WendyVogtTheIDSAshouldstandformorethanI Don'tSeeAnything.Youareresponsibleforan uncheckedepidemic.Startbeingtheexpertsona diseasethatisgrowingfasterthanAIDS.Startnow. CathyGlenn(continuedfromabove).Wouldtosee research$$gotodevelopingDEFINITIVEtestsforthis diseasesopeopleknowwhattheyareupagainstand canmakeinformedchoices? KieraFarrSomeonesimplyneedstojuststepup,and reallyhelp!can'ttakemuchmoreofthismyself.

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MelissaRascioIamaskingthattheIDSAdotheirjobsas doctorsandgetpeoplethehelptheyneed.Itis extremelysillythatIcouldhaveatextbookcaseof LymeDiseaseandanInfectiousDiseaseDoctorcould possiblytellmethatafter2weeksoftreatment(my headache,stiffneckandfever)arebeingcausedby "somethingelse"whenthosesameEXACTsymptoms arewhatleadmydoctortotestmeforLymeinthefirst place.ThisdiseasecandoALOTmorethengiveyou swollenjoints!Theangeramongthepeople commentingonhereisjustified.Thereisevidencebeing ignored,why? ItisnocoincidencethatsomanyofusChronicLyme SufferersgetlabeledwiththingslikeRA,Lupus,MS,ALS tonameafew.IfthereisnocureforLymeDisease, don'tyouthinkwe,theonessufferingfromithavea righttoknow?!Formanyofus,wehavebeeninfected mostofourlivesduetothelackofeducationwhenthis diseasewasrecognizedinthiscountry.Someofusdon't evenknowwhatitfeelsliketobehealthy.Someofus havegoneourentirelivesthinkingnooneunderstood thepainandweirdsymptomswefelt.Stilltothisday, doctorsdonotunderstandthediseasethatmostof theirsickpatientshave!Iamdemandingthatresearch bedoneonLymeDiseaseanditstransmissiontoafetus inutero.ThereisnoreasonwhyanOBGYNshouldtell theirpregnantpatientnottoworryaboutthiswhen thereisevidencethatprovesthetransmissionofthe diseasetoanunbornbaby! Icouldgoonfordays,onwhytheIDSAisfailingatwhat theyaresupposedtobeexpertsin.TheIDSAdoesnot consistofanyexperts,byanymeans.Thereare thousandsofusonthewebandwearenotgoingtobe quiet.Everydaytherearemoreandmoreofuswho looktothewebforanswersbecauseweKNOWthat whathappenedinourbodiesafterLymeiscompletely theoppositeofwhatourdoctorssaidwouldhappen. OurdoctorsmadeusthinkwehadLymeDisease,its easilycuredandwecouldmoveonwithourlives.Thats notwhetshappening!!!! Manymorepeoplewillgoundiagnosedforyears(like myself)untilastressfulperiodintheirliveswhenthe diseasewillbeabletoteartheirbodiesapartandthey willendupbedriddenliketherest.Thereisnoreason whyapersonshouldhavetofindoutwhattheyreally havebylookingontheinternetformorepeoplelike themselvestoseeif"theyweretheonlyone",onlyto findout,theywerenottheonlyone,thereare thousandsandthousandsofpeoplewhoarenotgetting

betterafter2weeksofantibiotics.LuckilyformyselfI foundoutandgotmyselftoadoctorwhocouldtreat metherightwayandlongenough....thankstothe peopleherepostingcommentswhoAREeducated aboutthisdisease.Inmyeyes,youarenotdoctors.You areaWASTEtosociety.Doctorsaresupposedtohelp people,theyaresupposedtokeeppeoplefrom suffering,theyaresupposedtobehonest,theyare supposedtocurepeoplewhenpossible. Stoptryingtomakemoneyoffofour100different symptomsandcureusofthisuglydisease.STOP ignoringtheresearchandevidencefromtheILADS.It wasanILADSdoctorwhohelpedmyselfandmany others.Pleasestartthinkingoutsideofwhatyou learnedinmedschoolandupdateyourselvesonthe newinformationthatisoutthere.Weareloosinghope andalltrustindoctorswhoknownothingabouta diseasethatisgrowingFASTERTHANAIDS!!! CathyGlennInformeddecisionsabouttheirhealthcare. BASICALLYTHESAMERIGHTSTHATOTHERPEOPLE HAVEINTHISCOUNTRYWHENTHEYAREFACEDWITH ANILLNESS/DISEASE. LarkLetchworthIjustwantmedicalprofessionalstobe educatedindiagnosingandtreatingtickbornediseases likeLyme,andtheIDSAandCDCtorecognizeand acknowledgethetruthsaboutthosetreatments,sothat nootherhumanhastogothroughtheyearsof misdiagnosisandmistreatmentIdid.TheIDSAprotocols aredestroyinglives.Howshameful.Youprioritize pharmamoneyoverhumanlives? JessicaSlackOpenyoureyestothesciencethatChronic Lymeexists.Recognizetheseriousnessofthedisease andepidemic.Iteffectsalotofpeople...Ipersonally knowsomeonegoingthroughit,Thisisveryrealand youallneedtostoptryingtohidethefactsandmanup andDOSOMETHING!!!!! KarenFriesenLikemanyotherpatients,Iwouldliketo seetheIDSArevisetreatmentguidelinesforChronic LymeDiseasein2012. ValarieMurphyIrememberwhenthedocdiscovered thathpyloriwascausingstomachulcers.Thatbrave manwastreatedwithgreatdisdainbythemedical community.ThenhewontheNobelprize.

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Ihavelittlerespectfordoctorswhoarecloseminded andtreatuswithuttercontempt.Theytriedtotellme thatbeingcrazydestroyedmykneecartilage. DavidCheneyLymeadmission!!Removepoliticsfrom yourorg.anddowhatyouaresupposedtodo. ChrisParsleyKodaweIforoneusedtolookupto doctors,asIbelievemostofushavedoneinthepast.It isnowtothepointthatIhavelostallrespectforthe majorityofthemedicalcommunity.Wewatchasthe healthoffriendsandfamilydeteriorate,yetthedoctors donotseeit.BestIcantellthemajorityofdoctorsare overpaidpillpusherswithnoreguardforhumanlife.I amtheparentofavaccinedamagedchild.Iwatched mychildchangeinoneday,thedayhereceivedhis vaccinationshotsthatIwastoldwereharmlessbya arrogantselfrighteousdoctor.Ihavelostagoodfriend toillnessthatstartedthedayhewasinjectedwithaflu vaccination.Themadnesshastostop!Mostpeopleout thereareattheveryleastwaryoftheseshotsandmany arewitnessingthedevastatingeffects.Somethingis wrongandthepublicisbecominginformed. NicolaSealIwouldliketoseerecognitionfromtheIDSA thatLymediseasecanpersist,andcauseadevastating, yettreatableillness.Shortcoursesofantibioticshave beenshownintheliteraturetobecompletely inadequateformanycasesofLyme.Persistenceis proven,weknowLymecansurviveshortcoursesof antibiotics,yettheIDSAdenythisblatantlyobviousfact. Commonsenseshouldrule.Thethousandswhoare suffering,andtheoneswhowerecured(likeme)with longcoursesofantibioticsshouldbelistenedto. TheresaDenhamIvanovIwouldlikeyoutorecognize thatyoursocietydoctorsarehumannotGods,andtrain themtoactinsuchaway.AsasupportleaderIhave watchedpatientsgetbullied,andhavewatched patientsdiebecausetheIDSAphysicianshavea preconceivedideasthatthisisallintheirhead,oreven worse,thatthecurrenttrentingrantfundingisX,so thepatienthasX,sothattheycangettheresearch$$.. IhavehadCDCpositivepatients(multipletests,mutiple labsincludingonesyouguysuselikeStoneybrook, Labcorp)comebackwithpositivetestsonlytobetold itsfalsepositive.IDSAphysiciansneedtousethe deductivereasoning,ratherthanwrotebooksmarts whenevaluatingpatients.JustbecauseIlivewhereyou haventseenLyme,doesntmeanitsnothere.(infactI importedhuntingdogsfromtheeastcoastfullofticks. Isitpossiblethatshowwegotourfirstexposure?)

KathyValimontSchreiberMyvotealsoforLyme diseaseandtheotherticktransmittedillnesses.Therea toomanypeoplesufferinghorriblyfromunder treatment/notreatmentofthisdisease.Regarding evidence,whenisahistoryofLymediseaseand persistentsymptomsfrommassesofpeoplenot consideredevidence?Areweallimaginingit?PLEASE, PLEASEaddressthis. LiseSheehanIwastoldbymypcpwhenigotbitbya tickin2007thatsinceIdidnotgettherashtherewas nothingtoworryabout.NowIcanbarelyfunction, everyyeargetsworse.Youneedtorunamassivepublic educationeffortandadvisepeopletotakea precautionarycourseofantibioticsassoonastheyhave beenbit,especiallypeoplewhoalreadyhavechronic illness.Ibelievethatmyimmunesystemwasunableto musteruparash,andsincesomanyhaveimmune issuestodayinourtoxicenvironment,thisisprobably thenorm.Also,Iwastoldtherewasnopointinkeeping thetick,whichIhadforawhile.NowIfindoutmylocal agdeptattheuniversitydoestestingeveryweek.ButI wastoldNOTTOWORRY.Thereistoomuchconflicting information.Everyoneisconfused,andthusnoone knowswhatthehecktodo.YoupeopleneedtoACT. SamMaloneMakethistheyearthatyouchampion evidencebasedtreatmentinborreliosisand neuroborreliosis... WendyVogtTherehavebeen*atleast*1,000+ responsestoyourquestion.Iseeyouaredeletinghuge numbersofthem.Thattellsastoryrightthere...why deletesincereanswerstoaquestionyouasked? UlanaLegedzaPleaserecognizechronicLymeread RitchieShoemaker'sbookandpapers. MelissaRascioOhyes,Ijustneedtoaddonething...My infectiousDiseaseDrMiddleton,testedmeforco infections...heleftanimportantoneout(Ihadnoidea atthetime).LaterMyILADSdoctortestedmeforallco infectionsonlytofindout,Dr.Middletonnevertested meforBabesiawhichiswhatwasstillcausingmy fevers.THISSHOULDNOTHAPPEN!OnceIwastreated fortheBabesia,myfeverswentaway. Nottestingsomeoneforapossiblyfatalparasite becausetheydontliveinanareawhereitmightbeis sickening.Mostdoctorswillnoteventhinktotestfor coinfectionsleavingpeoplewhomayhavegotten betterifcaughtfastandtreatedfast,stillsick.Itsajoke,

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IgotLymeinNCat9or10.Ifadoctorhadbeenliterate andthatlackofknowledgefromdoctorsaboutknew itwouldhavebeenasimplecourseofantibiotics.Iwent andemergingdiseasesisruiningmanylives. undiagnosedanduntreateduntilIwas18yearsold,and StacyChristenseniwouldliketoseecorps.govtellus thereisnoWAYthatamere28daysofantibioticscan thetruthaboutFukushima,Japanhttp://enenews.com/ eradicatesuchachronicandperniciousinfection.I ...also,analternativedemocratcandidatewouldbe battleditonandofffornearly4years,andamnow fabulous. workingonrestoringmybodybecausethecauseofthe aftermathisfinallygone.I'mnotextremelypro antibioticduetothechronicityoftheinfectionIopted KimDeSantisGoodwinTherearepeoplecommitting foranaturalandherbalantibioticapproachratherthan suicidebecauseofthehopelessnessyourguidelines havecausedtheirlives.Thesymptomlistneedstobe conventionalantibiotics.IttookalotofworkbutIhave realnotjustthefewcommonsymptomsthereare mylifeback.Ihadtothinkonmyown,andtotally hundredsandnotwoarealike.Makingitknownthe disregardthedeeplyflawedIDSALymeguidelinesin depression,anxiety,personalitydisordersthisillness ordertogetmyhealthback. wheninfestedinyourbraincauses.Itchangespeople ruinsthem,theirfutures,theirjobs,theirconnections MargeJarochEvelandIwouldliketoseetheIDSA withpeople.Ihopeonedaytogetmylifebackandfor becomeLessJudgmentalre:thosewhohavebeen everyonesufferingtoget decimatedbyLymedisease& Snap Crackle Pop Please Recognize the theirlivesback.Somuch thecoinfections.I'dlikefor damagebeingcaused themtobeMOREopen ChronicLymeDisease(andcoinfection) insideourbodieseveryday minded,LESSBigPharma Complex!Developdefinitivetests(the whilethereisnocure.Long owned,MOREcompassionate DearbornestandardSUCKS,Western tooursufferings,andLESS termantibioticsfroma BlotsareiffyandtheELISAistotally likelytotellusthatour Lymedristheonlychance atanylifebutthereisno problemsarepsychosomatic. useless),behonestaboutborrelia's researchorknowledge "The'blood'neverlies,baby!" persistenceinthebodyandthedifficulty aboutthistothepeople (yetmybloodworkwas of the infection complex seen in many whomostneedtobe disdained,ignored)..because educatedandmoneyneeds theInsurancecompaniesdon't withLyme,thefactthatitistransmitted tobeputintoacure. want topay.Ie,I'dlikeforthe inuteroandbreastmilk,investigate EveryonewillgetLymeat membersofIDSAtopossess whetherornotisitsexuallytransmitted thisrate.Ifyoulivedone "moreFORTITUDEthanwhat dayinourshoesmaybeyou likeitscousinsyphilis,andpromotethe certaingovernmental wouldseethetortureyou "intere$t$"possess. choiceintreatmentbetweendoctorand havecaused..youhave ...TheonlytimeIwasintrue patientnotlimitingittoamere28day millionsoflivesinyour needof"mentalhealth courseofabxatmost. handsyoucankillusor intervention"waswhenI saveus..atsomepointyou naivelyBOUGHTINTOTHEIDEA willmeetyourmaker. THAT(most,ifnotall)M.D.sof theC.D.C.WERETRULY SnapCracklePopPleaseRecognizetheChronicLyme interestedANDablere:HELPINGME. Disease(andcoinfection)Complex!Developdefinitive tests(theDearbornestandardSUCKS,WesternBlotsare RitaRhoadsReedIDSAneedstoletalldoctorsknow iffyandtheELISAistotallyuseless),behonestabout thattraditionalLymetestsletoutimportantbands.It wouldhavesavedourfamilysufferingchildren. borrelia'spersistenceinthebodyandthedifficultyof theinfectioncomplexseeninmanywithLyme,thefact thatitistransmittedinuteroandbreastmilk, MargeJarochEveland ..justsayin'~And,thoughtyou investigatewhetherornotisitsexuallytransmittedlike mightwanttoknowthat...incaseoneofyourbeloved itscousinsyphilis,andpromotethechoiceintreatment familymembersbegins, betweendoctorandpatientnotlimitingittoamere ..."needingapsychiatrist,"and"needingpsychogenic 28daycourseofabxatmost. drugs" Youasked.Ianswered.Willyoulisten?

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KimberlyAldrupOttoIwouldlovelovelovetosee moreaboutLymeInducedAutismandTreatmentfor my3yearoldwhocontractedLymefromme.Aswell as,GeneraleducationtoDoctorsaboutChronicLyme Disease,adaquatetreatment,prolongedtreatment,and acknowledgethatwearesuffering.Iwasturnedaway fromthelocalInfectiousDiseasebecauseIonlyhad3 positivebandsandnot5.Sotheyletaninfectious diseasepersongobackintotheworld....Icontracted Lymefrommyexhusband,maybecheckintothatand stopdenyingthatithappenedbySTD.Thankyou! KimberlyAldrupOttoLymeMom,Suffererfor9years, andAdvocate. MelissaRascioWhereareyourreplies?Shouldn'tthe IDSAbeansweringourquestionsanddefendingtheir guidelines?Iftheguidelinesarenotflawed,thendefend them... LydiaNiederwerferSetasideyouregosandlookand acceptalltheevidencethatshowsthattheLyme Diseasebacteriacanpersistaftertheprescribed outlinedtreatmentguidelines.Seethatthisdiseaseis notonesizefitsallandeveryoneshouldbeallowed thenecessarytreatmentaccordingtotheirneeds.Let thedoctorsthatknowhowtotreatLymediseasedo whatisbestfortheirpatients.Dowhatisbestforthe patients&openyoureyestothemedicalevidencethat, attimes,prolongedtreatmentdoesmoregoodthan harm.ImlivingproofthattheRIGHTandPROPER treatmentdoesworkwithabsolutelynolingering symptoms.Ittakesgreatstrengthtoshowthat sometimeswearehumanandwedomakemistakes, butnowisthetimetodowhatsrightandhelpthose thatdontfitthecookiecutterapproachintreating LymeDisease.Dowhatsrightandmakethenecessary guidelinemodificationsthatareneededsothatthe thousandsthatarecontinuingtosufferwithPostLyme Syndromea/k/achronicLymeDiseasecanrecoverand regaintheirlives. GeraldKimberWhiteForittotakeChronicLyme Diseaseseriously. AndyAbrahamsWilsonThesecommentsspeak volumes.DotherightthingIDSA:AdmitthatyourLyme DiseaseGuidelinesareflawed,andfacilitatea "Manhattan(Lyme?)Project"toaddressnewideasand approachesregardingLymeandothertickborne diseases.It'stimetothinkoutsideofthebox!

AndyAbrahamsWilson,Producer/Director,UNDER OURSKINhttp://www.facebook.com/underourskin BradJStewartIwouldliketotaketheIDSAforawalkin mywoods. DebraGrasleyI'dliketonothavetofeelashamedto tellphysiciansthatIhadLymeDisease.I'dlikeitifthe medicalprofessionbelievedthatchronicLDexists.If longtermantibioticsarenoteffective,well,whynot devotesomeresearchdollarsintofindinganeffective treatment.Ofcourse,sincechronicLDdoesn'texist, thenpleaseletusknowwhat'swrongwithus? ValerieMainsWolferForyearsIwastoldIhadapoor immunesystem...thenIwasdiagnosedwithCFIDSand toldbyanIDdocthatmyleveloffunctioningwasbelow manyofhisAIDSpatientsbutunfortunatelytherewas noeffectivetreatmentforCFIDSyet.Iwasputon disabilityandcontinuedtoprogressivelygetworseand thenfinallyafternumerousinaccuratetestsforLyme,a knowledgeabledoctorwhisperedtomethatIneeded toseeaLymeliteratedoctorimmediatelybecauseIhad almosteverysymptomonthelistincludingbrain lesions.Unfortunately,after30yearsofvarioushealth issuesIfoundouttoolatethatLymewasthecauseand amnotrespondingtotreatmentashoped.Toaddinsult toinjuryfamilyandfriendsarerepeatedlytoldLyme Diseaseisnobigdealorthatitdoesn'texistbytheir owndoctors.Inwhatworldisitnobigdealwhena personhasallofthefollowing:brainlesions,seizures, tremors,inflammation,profoundfatigue,flulike symptoms,compromisedimmunesystem,autonomic dysfunction,severecognitiveissues,lymphaticdisease, chemicalsensitivities,neuropathy,jointdeterioration, autoimmunediseasesofthethyroid,lungsandcns; relentingjoint,muscleandnervepainandmore recentlyproblemsdetectedwiththeheart,kidneysand liver.Nobigdeal...IthinknotIDSA! JenMarieanaccurate,informed,compassionatestance onchronicLymesomeintegritywouldbenice. KathleenCourtadeCollinsYousaythatyouwantto encourageopendialog,butasacompetentpracticing medicalprofessionalandasurvivorofchronicLyme disease,Ifeellikeavoicecryingoutinthewilderness.I wouldliketoseeLymediseasetreatmentguidelines revised.Lastyear,theIOMsaiditwasessentialfor medicalguidelinestotakepatientviewpointsinto account.TheIDSAhasn'tdonethat.Rather,patientsare routinelydeniedappropriatemedicalcarebecause

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IDSAinfluenceddoctorsandinsuranceprovidersfollow IDSALymetreatmentguidelines.Livesandfamilies sufferphysical,emotionalandfinancialdevastation becauseofthesenarrow,biasedguidelines.Iwouldlike toseetheIDSAREVISEtheLymetreatmentguidelines, includinginthediscussionpatientsandthephysicians treatingthem,fromBOTHsidesoftheaisle,notjust onetreatmentperspective.Iwasblessedwithadvanced knowledge,insight,access,andwasabletopursue prolongedtreatment;I'vebeensymptomfreefor7 years(afteralmostyearsofworseningsymptoms).How manyothershavecontinuedtosufferorhavediedin themeantime,becauseofilladvisedtreatment protocols?"Aboveall,DONOHARM..." JonLallementGetoutofthepocketoftheinsurance companies,andwalkinourshoes ValerieMainsWolferTestimonythatsomanyofuscan relatetohttp://www.youtube.com/watch?v=rlwBuFAI BeverlyBurgessIwasdiagnosed3yearsagowith Erlichiosisandreceived28daysofantibiotics.6 monthslaterIwaspositiveforBabesia.2yearslaterI ampositiveforLymeandBartonella.Inowhavebrain lesions,cardiacdamage,visionlossandsomedayscan't remembermyname.Iwalkwithacaneandhadtogive upmy20yearnursingcareertogoondisability. ThankfullyIfoundaLLMDtotreatmebuttherehas muchdamagebeendone.Iwascalledcrazyfor3years andtoldIhadfibromyalgia.Weneedbettertesting, moreLLMD's,morepubliceducationonLyme,better accesstomeds,andinsurancetocoverthestaggering medicalbills.TheCDCrecommendationsareshameful andhurtingmany.Iamsoangryanddisgustedhow patientsaretreated. JenniferBreaultHowlongwilltheyclosetheireyesto thisawfulsometimesfataldisease??Havesome compassion,andhowaboutmorals!!! CherylHendersonBrillMyhusbandhashad undiagnosedLymefor15yrsuntillastyearwhenwe finallyfoundadrtotreathim.BecauseoftheIDSA beliefs,hehaslimitedcare.Webothwanttohimtofeel likenormalagain.Lymeandyourbeliefshavestolen11 yrsfromourmarriageandhisenjoymentoflife.You needtostandupandrecognizechronicLyme,because ITDOESEXIST!Iseeiteveryday!Heandcountlessother patientshaveSUFFEREDLONGENOUGH!Changeyour thoughts!Howmuchproofdoyouneed?

MagorzataSzkutnikIwishallIDSAmembersgetbitten byinfectedticksandhave"postLymesyndrome". RenaeDeGrayMathePleaseaddressLymeDiseaseand ChronicLymeDisease,stopdenyingtreatmentand insurancecoverage,andsavelives!Thereisabsolutely novalidreasonnotto. KimSwannKingIamintheprocessofhelpingtotake careofmymotherwhoDOEShaveChronicLyme Disease.Ifonlyadoctorhadknownhersymptoms couldhavebeenrelatedtoLyme'sdiseaseandrunthe test,treatedherthenalltheneurologicalproblemsthat sheishavingrightnowwouldnotbehappening.Open youreyesIDSAthisdiseaseisREALandNOTinpeoples heads.Iwishyoucouldbestandinginmyshoesright nowwatchinghowthisdiseaseisdestroyingmy mother'slifeandbreakingmyheart. ValerieMainsWolfer http://www.youtube.com/watch?v=JpPFKpFXmQ&feat ure=player_embedded ValarieMurphyIDSA'sabuseofLymevictimsisgoing viral: http://www.Lymedisease.org/news/touchedbyLyme/ids aviral.html JoAnnColburnIreallythinkthatyouallshouldreread thisoath(ISWEARinthepresenceoftheAlmightyand beforemyfamily,myteachersandmypeersthat accordingtomyabilityandjudgmentIwillkeepthis OathandStipulation. TORECKONallwhohavetaughtmethisartequallydear tomeasmyparentsandinthesamespiritand dedicationtoimpartaknowledgeoftheartofmedicine toothers.Iwillcontinuewithdiligencetokeepabreast ofadvancesinmedicine.Iwilltreatwithoutexception allwhoseekmyministrations,solongasthetreatment ofothersisnotcompromisedthereby,andIwillseek thecounselofparticularlyskilledphysicianswhere indicatedforthebenefitofmypatient. IWILLFOLLOWthatmethodoftreatmentwhich accordingtomyabilityandjudgment,Iconsiderforthe benefitofmypatientandabstainfromwhateveris harmfulormischievous.Iwillneitherprescribenor administeralethaldoseofmedicinetoanypatienteven ifaskednorcounselanysuchthingnorperformthe utmostrespectforeveryhumanlifefromfertilizationto

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NowIamtakingappropriatemedicationandalongwith naturaldeathandrejectabortionthatdeliberately dietaryadjustmentsforthefirsttimeinalongtimeI takesauniquehumanlife. canfunctionthroughthedaywithoutcrashing. Iwouldliketoseerevisionstotheguidelinesandbetter WITHPURITY,HOLINESSANDBENEFICENCEIwillpass educationsothatotherscanavoidneedlesssuffering. mylifeandpracticemyart.Exceptfortheprudent correctionofanimminentdanger,Iwillneithertreat JulianneZhouCanIgetbackthe4yearsIlostas anypatientnorcarryoutanyresearchonanyhuman doctorsfailedtoeffectivelytreatmyseropositiveLyme beingwithoutthevalidinformedconsentofthesubject diseaseusingyourguidelines?Orwoulditbemore ortheappropriatelegalprotectorthereof, effectivetowishformoredoctorsliketheonewho understandingthatresearchmusthaveasitspurpose finallysavedmylifebybeingwillingtothinkoutsidethe thefurtheranceofthehealthofthatindividual.Into boxyouputthemin? whateverpatientsettingIenter,Iwillgoforthebenefit ofthesickandwillabstainfromeveryvoluntaryactof TappFranckeIngoliaIwouldliketoseetheposition mischieforcorruptionandfurtherfromtheseduction takenonLymeandchronicLymechanged.Itisclear ofanypatient. thatLymediseaseisamuchbiggerissuethenwas originallythought.Itistimetowakeupandseewhatis WHATEVERINCONNECTIONwithmyprofessional reallyhappening.Itisshamefulthatsomanypeopleare practiceornotinconnectionwithitImayseeorhearin sufferingwhentheycanbehelped.Relaxtheguidelines thelivesofmypatientswhichoughtnotbespoken toincludecoinfectionsandnonCDCpositivecasesof abroad,Iwillnotdivulge,reckoningthatallsuchshould Lyme.Moredoctorsneedtobeproperlyeducatedon bekeptsecret. Lyme.Itisanepidemicnowandneedstobedealtwith WHILEICONTINUEtokeepthisOathunviolatedmayit assuch. begrantedtometoenjoylifeandthepracticeofthe artandscienceofmedicinewiththeblessingofthe CherylHendersonBrillWithalltheinfoandbooksI Almightyandrespectedbymypeersandsociety,but havereadsofar...IfeellikeI'mmoreofanexpertthan shouldItrespassandviolate theIDSApanelis! Andy Abrahams Wilson These comments thisOath,maythereverseby speakvolumes.DotherightthingIDSA: mylot)thatyoutookand LindaChristopherson thinkabouthownegatively AdmitthatyourLymeDiseaseGuidelines LinquistIwouldliketoseean thedecisionsthatyouhave endtocorruptDoctorswho areflawed,andfacilitatea"Manhattan madehaveimpactedso hoardresearchforprofit,and (Lyme?)Project"toaddressnewideas manypeople. makedecisionswithdrugand andapproachesregardingLymeand insurancecompaniesintheir backpocket. LindseyGalliganPlease othertickbornediseases.It'stimeto recognizeChronicLyme! thinkoutsideofthebox! ArturDudkaStarttaking comingfromayearsufferer. Lymediseaseseriously... DianeBielLookintomygirls AndyAbrahamsWilson, JeffSlawsonIwouldliketo eyesandtellthemtheyare Producer/Director,UNDEROURSKIN seetheIDSAadmittheyare notsick....becausethepain theyhavefromTBD'sare wrongaboutLyme.Iwould killingthemandmyself....pleasedosomethingabout liketoseethemadmitthattheyKNEWtheywere this...please... wronganddidnothing.IwouldliketoseetheIDSA DoctorthatdiagnosedmewithPTSDandtoldmeto "stoppracticingvoodooandIwillgethealthy"brought DawnDumasLarsonIwasdiagnosedwithLymeonly2 uponcharges. monthsago.Ihavehadthisdiseaseforapprox.20 years.Dr.afterDr.wouldnotconfirmtheillnessdespite KaetheMitchellDearIDSA,whenourchildrenmakea bloodworkandclinicalcriteria,becauseIdidnot rememberatickbiteorrash. mistake,weparentsallowthemtheopportunityto learnfromit,stoplyingaboutit,andmoveforward. EachofushereisallowingtheIDSAtodothatnow.

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childlivesinchronicpain:(.Please,acknowledgethe We'renotlookingforrevengeorachancetosay"Itold educationandstandardsmustbelookedatoncemore youso".Thereiswaytoomuchatstakeforthat andreregulated. pettiness.PeopleineverystateoftheUSarebecoming infectedwithLymeandmanyothertickbornediseases DonnaZukaitisFalconeIDSAGOINGVIRAL!!betthe andaregoingundiagnosedandun/undertreated.It's IDSAwishesitwasfordoingsomethingheroicand timetolearn,quitlying,andmoveon.Iknowmykids benevolent! wouldbedisabledbynowifIhadlistenedtoallthe http://www.Lymedisease.org/news/touchedbyLyme/ids doctorsandspecialistswhowantedmetofollowtheir advice,gleanedfromtheIDSAguidelines.In2012, aviral.html pleaseresolvetochangethem. JoAnnePettitRecognizeChronicLymeDiseaseand SuzieLacroixIwouldliketoseetheIDSArevise listentothepeopleanddoctorsthatknowwhathas treatmentguidelinesforChronicLymeDiseasein2012 helped...formeitwasILADSandtheirtreatment guidelinesthatsavedmylife!! SheilaSacconeIwasdiagnosedonly6monthsago. Withouthealthinsuranceandwiththecurrentthinking KortniGehriI'dliketoseechronicLymedisease onwhatthisdiseaseisanddoes,Iamdoomedtoa recognizedandmedicaldoctorstaughtaboutit! dismalfuture.Pleasehelpusgetthehelpweneed. AngieYohoRobertsonBeopenlyhonestthatchronic Lymeexists,givepatientsfairtreatmentandstopthe RachelBechlerGreenRecognitionofChronicLyme sufferingofthesepeople.Sufferingforforover8years Diseaseandrealsolutionsfortreatmentandbetter now! testing. AngelaCastle 2012istheyeartheLymedisease JenniferYinRECOGNIZECHRONICLYMEDISEASE. guidelinesmustchange!!Theevidenceisquiteclear CurrenttreatmentprotocolaccordingtotheIDSA thatchronicLymediseaseDOESexist,thatinmany guidelinesareextremelyfaulty!Iwastreated cases,longtermtreatmentwithantibioticsclearly considerablyearlyforLyme(35daysintoinfection),I worksandgreatlyimproveslivesofthosesuffering. did6monthsofantibioticsandatonofherbal Pleasewakeuptothisepidemicanddotherightthing! medications.It'sbeenayearandahalfnow,Iamsoo muchbetterthanbeforetreatmentandcontinueto Thisimmenseproblemneedspromptactionandmust improveonalternativetreatment,butI'mstillnot100% includerevisedguidelines,research,andeducationof backtonormal.Thisdiseaseislivinghell. doctorsonalargescale. BarbaraBerselliMurphyLymeDiseasepleaseplease WhitneyJanasCHANGEYOURGUIDELINES.Inrefusing todoso,youareresponsibleforteachingpractitioners pleasehelpallthosewhosufferneedlesslyiteffectsfar toomanypeopleeveryday everywheretoperpetuatethewidespreadbeliefthat WEARENOTSICK.Wearerealpeoplesufferingwitha RandyGarvinPrintedposts.Suggestyoudothesame!!! veryrealillnessandthefactthatyoudonotunderstand Sure"somehow"postgotlost itdoesnotmeanyoucansay ordeletedbytheIDSAandno DianeBielLookintomygirlseyesandtell itdoesn'texist.STEPUP.Stop onementionedchronicLyme. themtheyarenotsick....becausethepain writingoffwhatyoudon't 500+postsand"likes"injust theyhavefromTBD'sarekillingthemand understandasnonsense,and tackleitheadon!You'vegot 24hours!Yetstillthe myself....pleasedosomethingabout thepowerandtheresources. directorswilldonothing. this...please... Insteadofabusingitatthe KarenWilliamsonKeller expenseofthelivesofGOOD Makeitaforcedpriorityto PEOPLE,seekoutANSWERS MANDATELYMEEDUCATIONTOALLPRIMARYCARE tothisconfusingepidemic.ADMITthatitisaVERY seriousepidemic!Youractionsupuntilnowhavebeen PHYSICIANS.Mypedsofficeistotallyclueless!!!Weare theequivalentofstickingyourfingersinyourearsand stilltryingtogetadiagnosisafter9months.Ourstate saying,"LalalaIcan'thearyou!". insurancewon'tallowustoseeaspecialistwithout referralsandmypedsaidnorash,noLyme.Wtf?Somy

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You'vetriedtoignoreus,butnowyouseethatyou can't.Thisproblemcannotbesweptundertherug ignoringaproblemofthismagnitudeonlyprovidesa disservicetousallandservestodiscredittheentire medicicalprofession.Iwillusethosedietaryregimens whichwillbenefitmypatientsaccordingtomygreatest abilityandjudgment,andIwilldonoharmorinjustice tothem...SolongasImaintainthisOathfaithfullyand withoutcorruption,mayitbegrantedtometopartake oflifefullyandthepracticeofmyart,gainingthe respectofallmenforalltime.However,shouldI transgressthisOathandviolateit,maytheoppositebe myfate.Doesthissoundfamiliar??? RyanWhitwoodRecognizetheexistenceofChronic LymeDiseaseanditspropertreatment.Don'tleave thoseinfectedsufferingbecauseofyourclosed mindednessandignoranceoffacts.Thesepeopledid notchoosetogetsickandshouldn'tbetreatedlike attentionseekers,butaspatientswitharealillnessthat hasleftthemdebilitated.Wewouldlovetosupport "your"society,butuntilyousupportChronicLyme Diseasepatientsitwillneverbe"our"society. KimberlyAldrupOttoDon'tyoufinditfunnythatthe commentsareregardingLymeDiseaseoutofALLLLthe infectiousDiseases.OPENYOUREYESANDCLOSEYOUR POCKETS! ThomasKistlerRevisetreatmentguidelinestoactually helpusandmakeiteasiertogettreatment.Recognize Lymeisalmosteverywhereandanyonecangetit.Most ofallgettogetherandfindadecentcureforpeopleso wedon'thavetowasteourlivesawayinpain.Sowe actuallyhavealifeandcancontributetosociety. BriannaBrackettRecognizeChronicLymeDisease! Listentothosewhohavesuffered. PaulWoodsonLikemanyothers,Iwouldliketoseethe Lymediagnosisandtreatmentguidelinesrevised. ColettePrcevichYouneedtorevisittheLymedisease guidelines.ThescienceispublishedthatchronicLyme diseasedoesexistandthatpersistantinfectionpersists despiteshorttermantibiotics.Thescienceistherethat itispassedcongenitallyfrommothertochild.The scienceistherethatoneusuallyalsohascoinfections. Wouldyoulikemetoprovidethelinksforyoutothese scientificstudies?Ohwait,youalreadyKNOWandhave seenthembutchooseinsteadtodenypeopletheirwell beingtofillyourownpocketswithmoney!

IliveinCanadaandourhealthsystemadoptedyour flawedguidelinesin2006andthousandsupon thousandsofpeoplegomisdiagnosedeveryday.Ihave hadtotravelandpayoutofmyownpocketformedical costsfortreatmentandwesupposedlyhavefreehealth care.Ihavepassedthishorriblediseasetomychildren throughbirthandalsomyoldestwasbittenin2008and deniedtreatmenteventhoughhehadabullseyerash.I amfortunateenoughthatwearegettingtreatmentfor myselfandourthreechildrenandwithlongterm antibiotics,weAREgettingbetter.Pleasewake up!!!!!!!! KimberlyAldrupOttoInsurancedoesn'tcoverour diseasebecauseoftheguidelines,theydon'thaveto. Sowearesufferinginmorewaysthanyoucouldever imagine. KaitlinWilsonBlackburnRecognizeLymeandrelated tickborneillnessesastheserious,lifechanging afflictionstheyare.Assomeonewhosuffersdailyfrom Lyme,itisheartbreakingtofeelthatconventional medicinedoesn'trecognizeorcareaboutmypain, suffering,andwellbeing. YvonneForeyHelpusinsteadofhelping yourselves...stopdeletingpostsandgiveussome answer...obviouslysomeoneswatchingtodelete..you askedus..answerus! JeannieBonetpelsIhavegoneto30doctorsin16years andinthatentiretimeitwasFibromyalgiaandCFS, doctorsneedmoreeducationfromyou.CHRONICLYME needstobetakenseriouslybecausethoseofusthatare sickarehorriblyill.In2009,InearlydiedfromCHRONIC LYMEDISEASE.Ihavelostrelationshipstothishorrible disease.IhavebeenfinanciallyruinedbythisCHRONIC disease.AllweWANTisTREATMENTforourCHRONIC LYMEDISEASEandhaveinsurancecoveritandtoHEAL fromCHRONICLYMEDISEASE.Bytheway,I'min CALIFORNIAandI'malwayshearing,thereisnoLYMEin CALIFORNIA.I'mheretotellyou,YESTHEREIS.Please giveusbackourlives,thisiscriminalnottotreatus,we arenotLEPERS.Thankyou. AngieYohoRobertsonAftersufferingforsolongfrom Lymeitstillmakesmesosadtoseehowmanyother peoplearesuffering.Ihaveknownitbutampraying thattherightpeoplefinallyopentheireyes.Wehaveto putaSTOPtoLyme!

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CathySwainCakebreadIwouldliketoseetheIDSA revisetheirguidelinesonLymeDiseasesothat:patients withLymeDiseasemaybeproperlytreatedwithout goingbankrupt,sodoctorswhotreatLymeDiseasewill nolongerbeprosecutedfordoingtheirjobandsoFolks whoarebittenbytickscanbeproperlydiagnosedand treatedrightawaysofewerpeoplewillsufferthelong termeffectsofthisterribledisease! MichelleGagnonPleaseadopttheILADSguidelinesthat isbasedonscience,truthandfactsthatiteffects everyonedifferently.Itishardtotestforasitcanbein variousorgansoranywhereinthebody.Different testingmethodsshouldnotbethepriority.The FEDERALGOVERNMENTsupportsthatLymeDisease shouldbediagnosedclinically.Thefirststepisto educatethemedicalcommunityandnotfrighten doctorsforprescribinglongtermantibiotics. Ifyou'rescaredofthecostissueinvolvedinthis,it's probablyalotcheapertobeon5yearsofantibiotics verse25yearsofDOZENSofunnecessaryxrays,ultra sounds,mri's,heartmonitors,hundredsofbloodtests thatdon'tshowanything.Andthat'sjustme.Some peoplegetsurgery'sandhaveorgansremovedonlyto figureoutthatitwasn'ttheproblem.Itcanbe psychologicallydamagingwhenthereisnosupport fromanybodyasthereisnoeducationandmanypeople looknormal.Itiscomplex,thereforegeteducatedby theLymeLiterateDoctors.Sometimeyouhavetosuck itup,acceptyourignoranceandmoveontodowhatis right.The600peoplethathavecommentedhereare desperate.PLEASEHELP!!!!!! KennethDamsellstoptakinginsurancemoneyandstart dueingyouhipcritalhathorhaveyouforgotthatfor moneyforinsurancecotodinightlimedeseasefor someonewhogotitanddidnotknowaboutbeingbit bythetick.whatabouttheolderpeoplethatnevernew andthatyearsago. MichelleMilledgeTrostlerIn1999Iwasbitbyatickin HuntingtonBeach,CA.29yearsold,totallyhealthy,not acareintheworldandlivingontheWestCoastIhad noideaIshouldmaybegotoadoctor.Ihadthetickin myhand,andputitinthetrash.BytheendofthedayI couldn'tholdmyheadupandhadtogohomebutthe nextdayIfeltbetter.Fastforwardto2011andIgot sick.Reallysick.Lymesick.SometimesIcan'tholdmy headupjustlikethatdayIhadatickinmyhand.Ican barelyworkbutmanagetocontinuetodosoandthank godbecausethecostofthetreatment(whichseemsto

beworkingmebacktohealthalbeitslowly)isCRAZY HIGH.Behindthesciencethatyoubelieveinordonot believeintherearerealpeoplesuffering.Icouldn't makethisstoryupifItried!Revisit,Reconsider!Lymeis alltoorealwhenitisyourbodythatisfightingit. AnneKilleenIwouldliketoseeyoustandbehindthe HippocraticOathbyrecognizingandproperlytreating patientswithchronicLymeDisease. KristieLohrerIwouldliketoseetheHippocraticOath takenmoreseriously. DianeJanasThinkofthemoneythatcouldbesavedif thiswasrecognizedandtreatedcorrectlyinsteadof diagnosingeverythingelseunderthesunandmaking peopletrytreatmentaftertreatmentwhiletheylose yearsoftheirlives!Areyouafraidofadmittingyou werewrong?Guesswhatyouare!!Andtoomany peoplehaveandaresufferingforit.Iwonderwhat wouldhappenifthepresidentorcongresshadtolive withchronicLymedisease. KimberlyAldrupOttoThenumberofthesecomments arethetrueStatisticsofrealhumanbeingsthathave hadthereHUMANRIGHTStakenawayfromthemby nonbelievingmedicalprovidersandgreedypockets.It isacrimeinitself. DarlaBrownPleaseopenyourmindtothepossibility mthatChronicLymeandcoinfectionsdocauselong termdisabilities.Pleasefundresearchforaccurate testingandaconsistentreliabletreatmentplanforallof uswhowantourlivesback.Thankyou. AnnMaherPlease,Pleasechangeyourguidelines.They followyourguidelinesinEuropeandI'vebeenillfor 16years.I'vehadtotogetdiagnosedprivatelyabroad. BEcauseofyourignorance,IdoubtIwilleverfully recover.CHRONICLYMEDISEASEDOESEXIST!! KristieLohrerGosh,thisislikewritingtoSantaClause :O) JenniferFilaLikemanyothershere,I'dliketoseethe ISDArecognizetheLymeepidemicforwhatittrulyis.I wasmisdiagnosedwithMSafterSEVENnegativeLyme tests,onlytolearnlaterhowunreliablethetestsare. SeveralotherfamilymembersaresufferingfromLyme too.We'vespentthousandsofdollarstryingtoget properhealthcareinasocietythatdoesntrecognize thisawfulcondition.IwanttoknowhowtheISDAcan

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foryoutogiveanewfocustoLymeandChronicLyme continuetodenytheexistenceofthishorrible throughanunbiasedandopenmindedinterchange disease??OneprominentLymedoctorwasquotedas saying,"theabsenceofproofisnottheproofof withchronicLymesufferersandLymeliteratedoctors, absence".Enoughwiththepolitics...peopleare andwelookforwardtoworkingtogetherbetterinthe sufferinganddyingneedlessly! future.Wecan'tlosesightofthefactthatweallsharea commongoal:toendsufferingthroughdiagnosisand ChristinaAnnChangeyourguidelinesandactuallyhelp treatmentofinfectiousdiseases,andwe,chronicLyme patients,wouldlikenothingmorethantoextendthe thosewithchronicLyme.Stopsweepingitunderthe IDSA'sknowledgeandtreatmentbasetoincludethis rug.IDSA,youareeffectivelyresponsibleforthepain, diseasewhichcontinuestobeunderdiagnosedand sufferingandlivesofhowmany?Itstimetohelp undertreated. patients,notyourpockets. LynnBakerLawrenceThebesttestingforLymeDisease JayneHallSheaItisnotaboutmoreeducation,better andcoinfections,thebestresearchforthebest awareness,thinkingoutsideofthebox,studyingthe medicinesandtheproductionofthosemedications,the research,orhearingourcriesforhelpthatwillgenerate truereforminthediagnosisandtreatmentofthis changeofregulationssodoctorscanadministerthe disease.Reformwilloccurwhenitismore medications,andaplanthathelpspeoplewhocanno advantageoustotheIDSAtodiagnoseandtreatthanto longerwork,becauseofYOURdecisions,fundedbythe not.Itwilltakealawsuitofgreatmagnitudetochange IDSAbecausetheblamelargelyrestsonyourshoulders theIDSAperspective.Onlythenwilltherebean"about thatpeopleareintheconditiontheyareinphysically, face"turninIDSAguidelines.Thefearofmalpractice mentally,emotionallyandintheend,financiallyfroma willthendictatetheappropriatediagnosisand diseasethatisREALthatYOUchoosetoIGNORE.Just treatmentofTickBorneIllnessandChronicLymebythe likethemedicalcommunityignoredAIDSfor20years. IDSA. Really,IDSA,itisshamefulthatofYOUthatourID ValerieMainsWolferLet'snotforgetallthechildren doctorshavetheirhandsboundtoanineffectivetest whoarebeinglabeledwithlearningdisordersand ANDineffectivetreatmentwhichcostpeopletheir marriages,homes,custodyofchildren,jobs,notto behavorialproblemswithoutfirstrulingoutLyme. mentiontheycannotaffordanymedicationsafterthey Whentheparentsinsistontestingthedoctorstellthem itcan'tbeLymebecausethe losetheirjob,family KimDeSantisGoodwinWiththe testcamebacknegative...the memberswhothink"it'sallin sametesttheCDCadmitsis guidelinesitseemsasthoughourfeelings theirhead",beingsentto notaccurateandshouldnot psychiatristsfornogood arecorrectaboutthemoneytheidsa bereliedupon. reason,theirabilitytowalk, makesforkeepingthisasecret.Ofcourse talk,see,hear,orhaveany KathrynThorneAsstated qualityoflife,nomoredaily youknowthisisabioweaponmadeto exercise (isitanywonder previously,I,toowould wipeusout,trickourimmunesystems thereisanobesityepidemic greatlyappreciateitifIDSA andthisisnotanormalbacterium.You whileyouarechoosingto wouldrevisetheirdiagnostic allknowthatsostopplayingdumb. andtreatmentguidelinesfor ignoretheChronicandnon LymetoincludechronicLyme Killingformoneyisnobetterthanbeinga chronicLymedisease asadiseaseandlongterm situationintheUSA),even massmurderer. treatmentasaviableoption, theabilitytocookbecause andfortreatmenttobemorereadilyavailableand youcannotholdaspoonlongenoughtostirandhave morepatientfriendly.Thiswillhappenwiththehelpof beentestedforcarpaltunnelandtoldNO,youdon't havethateither.Shameonyou,IDSA. recognitionfromtheIDSAandwiththeirsupport againstinsurancecompaniesrefusingtreatment And,ifyoucannotdotheabovementioned,orWON'T, coverageandfordoctorsbeingallowedthefreedomto howaboutjustbeingupfrontwithusandtellingus treatastheyseefit. WHYyouwon't.Withtheevidencebeforeyou,andthe overwhelmingamountofpeoplewhoaresickinthis Didyougetthat,IDSA?Thanksforaskingforourinput. countryalone,howLONGwillyouchoosetoignorethis Wewouldgreatlyappreciateakindearfromyou,and

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asTHEMEDICALSOCIETYDECIDEDTOIGNOREAIDS. Shameonyouall. DawnBaggettOversightanddisciplineofthehighly influentialteachingdoctorswhodenyaccurateLyme diseasediagnosisfromknowledgeableandreplacewith theirownunsubstantiateddiagnoses.Notonlyarethey puttingpatientsatrisk,buttheyareinfluencingdoctors intraining. LoriPhilippBrunkIama7yearsuffererofLyme Disease.Ithasinfectedeverypartofmybodypain burning,neuro.,painfuljoints.Justfoundouttodaymy daughterhasLyme.Ugh!Nowtofindadoctortostick his/herneckoutandtreat!PLEASERECOGNIZE CHRONICLYMEPEOPLEAREDYINGSLOWLYFROM THISDISEASE! KimDeSantisGoodwinWiththeguidelinesitseemsas thoughourfeelingsarecorrectaboutthemoneythe idsamakesforkeepingthisasecret.Ofcourseyou knowthisisabioweaponmadetowipeusout,trickour immunesystemsandthisisnotanormalbacterium. Youallknowthatsostopplayingdumb.Killingfor moneyisnobetterthanbeingamassmurderer. CarmelaBonitoRecognizechronicLymedisease,allow fornecessarytreatment,getthejerksofftheboardwho callchronicLymepatients"psycho"..theymakeafool oftheIDSA.ChronicLymeneedstobeproperly acknowledgedsowecandecreasethenumberofilland dyingpatients. KimJohnsonSiebertAdmitit.ChronicLymeDisease doesexsist...andrewriteyourguidelinessoIdon'thave todrive4hourstofindadoctorthatcantreatit. RachelRajputStopdenyingChronicLyme'sexistence andchanneltheseresourcesintohelpingthosethat sufferfromit! SusanRWetzelI'dliketoseetheIDSAadmitthatmy entirefamilyofNINE(yesnine!)...alongwithtensof thousandsacrossAmericaabsolutelyDOhaveLyme Diseaseandthatit'snot*AllInOurHeads*!I'dliketo seetestingthatcompletelyeliminatestheElisatestand *actually*findstheLymedisease(andcoinfectionsfor thatmatter!)thatisrampantinmyblood...butthatthe ElisaandWesternBlot*can't*find!I'dliketoseethe IDSAstepupand*help*allofuswhoaredieingaslow andhorrificdeathfromLymeDisease!

FaitheAndersonIwouldliketoseemychild'sLyme diseasetreatedasseriouslyandeffectivelyasmydog's Lymediseasewastreated.Ifinditdisgustingthatmy childsufferswhilethemedicalprofession/insurance companiesdukeitout. JoanMetzgerpleaserecognizethatchronicLyme diseasedoesexistandhelpusgettreatments....itisvery disturbingwhendrsargueamongthemselvesandare afraidtotreatyou,butalsocan'ttellyouwhatswrong otherthanyouhavingLyme...youarehurting. JulieHuneycuttYouneedtorecognizeChronicLyme Disease.Haveappropriate,provenguidelinesfor treatment.Helppeoplewhodesperatelyneedhelp. Educatedoctorsandthepublic.Whyhasthisbeensuch anissue?Dosomething!Everydayyouhold responsibilityforyournonactions.Whatarethe results?Deteriorating,strugglingindividualsand families.Wakeup,ownup,andchangeitupin2012!! JuliaMariaPilliodEganStartbyhavinganemergency boardmeetingandlookateachotherinthefaceand figureouthowyouhavefailed.Thenstartfiringabunch ofpeopleandbringinsomefreshtalent.ChronicLyme Diseasewillbewritteninthehistorybookasyour greatesthumanfailure.Ihad15yearstolivelikeadead personwithuntreatedLyme.4yearsyes,FOUR,in additionFORTREATMENT...NOTTWOWEEKS!!!! Spendingmyfamilieslifetimesavingstotrytosave myself.MostwasspentonIVsandPorts,medications, andothertreatmentstothetuneofsever10'sof thousandsofDollars.Therearethousandsand thousandsofus.2012anewyearforyounottoHATE USASMUCHASYOUDO.Andwearenotterroristsfor askingforbasichumanRIGHTS!!!!!!! HeirloomHourglassChangeyourLymeDisease GuidelinestotheILADSguidelineswhichareactually triedandtruebyrealdoctorsthatcareabouthelping theirpatientswiththisHORRIBLEdiseaseandtheco infectionsassociatedwithit,notjustliningtheirpockets withmoneyfordenyingtheseverityofit&correct treatment.Itwillallcomebackto"BITE"you,most likelyliterally,somedayunlessyougetonboardand reallystarttryingtofindnewwaystoprevent, diagnose,andCORRECTLYtreatthisworldwide epidemic!Thenumberofsufferersisgrowing&you won'tbeabletoignoreitforever.Whydon'tyoujustdo therightthing?

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SonjaFischerberarbeitetbittedringendeureLeitlinie zurBehandlungderLymeBorreliose!Sieistauchin EuropaGrundlagevielerdortverfasstenLeitlinien. AufgrunddieserLeitliniebinich14Jahrelang fehldiagnostiziertundfehlbehandeltworden.Heutebin ichschwerundchronischkrank. KristenSmithRecognizeChronicLymediseaseand reviseyourguidelinessothatthosewhosufferfromit canbetreated,andsothatdoctorscanhelpthese patients.Yourleadership,visionandcompassionare needed. HootanVeehStudyLymeDiseaseandespecially BartonellaSpeciesinhumans.Helpotherdoc'sbesides IDtobeabletoidentifytickbornediseasesearlierand moreaccurately. MarieRosenbergKovitchMysongotsickacouple monthsaftergraduationandthelast3.5yearshave beenspentgettingfalseorincompletediagnoses. CountlessERanddoctorvisitslater,Igenexfinally confirmedLyme.Noneofthemanydoctors/specialists everbroughtupLymetous.Finally,Ifoundawonderful doctorwhoishelpingmyson'sbodystarttohealfrom whatLymehasdonethroughtheseyears.Healready feelsimprovedenergybutwehavealongwaytogo. Lymehassorelyaffectedmyson'sbody,mind,spirit, goals,relationships,faith,senseofsecurityeveryday. Thedelaysinafulldiagnosisandtreatment,the exhausingobstacles,theheftyfinancialbills,andmost importantly,theyearsfulloffrightfulandconfusing daysandnightsmyson(andhisfatherandI)hashadto endurehaveallbeenduetothefactthatChronicLyme isnotrecognizedproperly,andIDSAisimportantpartof thishugedifficulty. SnapCracklePopAmen,MichelleGagnon ValarieMurphyNowifIgotoadoctorwhotreatsme withcontempt,Iwalkoutandrefusetopay.Itellthem why. DeborahViaDixonYesTheHippocraticOath...good point,,init'sdefinitionis"todonoharm"doesn'tlook likeyoufollowthatgoldenrule.WAKEUP!Youruseless, nonsensicalguidelinesAREhurtingpeopleeveryday. WhatifitwasYOU,oryourCHILD,orsomeoneyou LOVEorsomeoneyouknow.Thelongertheblindersare on,thecloserYOUaretoone,ifnotmoreofthose.It's onlyamatteroftime.WeNEEDandWANTacceptance, treatmentandresearchN.O.W.

AgnieszkaGroAlittleawarenessofchronicLyme diseaseinmycountryandmoreILADSdoctors. AmyMacWhirterPleasestudytheLymebacteria....and howitworks...thenyouwillseehowitissodifferent thanothersandhowoftenitgoeschronicduetothe wayitevadestheimmunesystemsoamazingly!Please dothistosaveourcountry!Alsopleasestudythe chronicLymepopulationtoseethatthisISbeing sexuallytransmitted!!ANDfrommomtobaby!Plusthe factthataninfectedpersonsendsoutphermonesfora newbite...andthesenewbitesmoreoftenthannot containMANYtickbornecoinfectionsinthesebites.I wasrebitanditdebilitatedme.Isaw40docs(whowere followingtheIDSAElisatesting)andtheyeach dismissedmenotknowinghowtotreatme.Iendedup havingALSandMSsymptomsandonlythenIfounda docwhotreatedmeclinicallyandhavingchronic Lyme/babesiosis/bartonellaandmanyotherinfections. Itstakenme5YEARSoftreatmentandI'mfinallynow startingtobeabletodriveandhavesometypeof normalcyinmylife...Theseguidelineswouldhave KILLEDME!Infactitkillsmanypeopleeveryyear.Thing aboutthisandLISTENtouspatients!!!Thankyou... DanaRiveraLymeDiseaseisatepidemicproportions. PeoplearesufferingandDYING.Lymeistheworst diseaseanyonecanexperience.Willittakeoneofthe IDSAdoctor'sorfamilymembersexperiencingLymefor yearsforthingstochange?ChronicLymeexistsandyou knowthis,yetnothingisbeingdone.Youknowthe LymebacteriaismorevirulentthanTreponema pallidum.Yetnothingisbeingdonetohelpthose suffering!Whenwillyouhelp?Stoppretendingand startacknowledingthosethataresickanddyingfrom Lymeandcoinfections!Changetheguidelines!! CarolSnowMilnePreviouslyhealthyandactiveadults withsomuchtoliveforfindthemselvestotally disabled.RecognizetheaffectsofchronicLymedisease orcomplicationsbecauseofthedisease.Thankyou! JuneWhiteheadisuffereverydayfromLyme disease!theguidelinesneedtobechangedwhyarewe constantlyrefusedhelp!!! VictoriaAvaIwilladdmypost/voice....pleaseplease reviseyourguidelinesandstarttakingChronicLyme DiseaseandChronicTickCoinfectionsseriouslyinstead ofjustsayingitisautoimmuneandonlypalliative measurescanbegiven.Peoplestaymonthsandmonths onabxforacne,butyettheIDSAisagainstlongterm

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antibioticsforChronicLyme.Trulywhatisworse, ChronicLymeorAcne? SusanAshAccesstotreatmentcoveredbyinsurance thatwilltrulyrestoreustothebesthealthourbodies arecapable,therespectwealldeservethatother chronicallyillpatientsreceive.IwasaFORESTERand wentto10doctorswhoalltoldmetoseekpsychiatric healthuntilapainclinicoflastresortfinallytestedme. Positiveofcourse!IfIamevertoldbyanother infectiousdiseasedoctorthatallIneedisto"takemy lifeback,stopyourmeds,andgetexercise..."Wait,I'll neverhearthatagainbecauseIwillneverputmyself throughthetortureandabuseofseeinganother infectiousdiseasedoctoragain.AndI'mstillsick.5years andI'mstillsick. NancyMitchellLyme7yearsthisApril.Turnedawayby aninfectiousdiseasedoctor(Iusethetermdoctor lightly).Iwouldliketoseetreatmentforall.Iwant doctorstotakemeandotherswithLymeandcompany seriously.Ifyoucannotdothis,stepdown. StaceyLynneDalpeChangetreatmentguidelines, Improvetests,Makewesternblotspartofyouryearly physical,Healthinsurancetoactuallycovertreatment after30days,AdmitLymecanattackallpartsofthe body,AdmitthereischronicLyme,FUNDRESEARCH!I couldgoonandon.... Iwassickfor2yearsbeforediagnosed.Diagnosedwith 13bandsreactiveonmyWB11/29/10.By4/25/11,5 monthslatermyheartwasfailingandIhadtogoinfor openheartsurgerytoreplacemyaorticvalveand rebuildmyaorta.Iwasonthepicclineforonly5weeks whenwefoundoutaboutmyheart.Theyhadtostop treatmentimmediately.Nottomentionthe2monthsof doxyIdid.Ihavehadsomanythingshappentomeover thepast3yearsitisnotevennormal.Iamunabletobe treatedbyapicclinenow...(becauseofmyheart)Still symptomaticofcourse.Ialsohave2coinfections.I haveonlyknownIhaveLymeforalittleoverayearand inthispastyearmylifewasalmosttakenfromme..... LYMESUCKS! JulianneZhouOneword.Listen. MichEladaFocusonProtomyxzoarheumaticaasa possiblecauseformanychronicautoimmunedisorders. NicoleContiHarrisPleasechangeyourguidelinesfor LymeDisease.ThereissuchthingaschronicLymeandI

havesufferedwithitsinceIwas10yearsold(now25) Misdiagnosedfor4yearswithMono,vitiligo(asithas affectedmyskin)andtestedforLupusetcwhichnone ofthemIhad.Pleasepreventfurthersufferingby fundingandeducatingourmedicalfieldaboutLyme. Pleasehelptoanswermillionsofquestionstothose whoaresufferingwiththisdisease. JimPriceHowaboutarealnationwidetruthcampaign, forachange. JacqiEulerThisisavideofromDr.Yost,youshould watchit,veryinformative! http://www.youtube.com/watch?v=EwW0 ky7DdY&feature=plcp&context=C3555110UDOEgsToPD skIbSL_rIun5PAK2feOCtb SnapCracklePopAnexcellentvideoto watch:http://www.youtube.com/watch?feature=player _embedded&v=EwW0ky7DdYAMedicalDoctorwho contractedLyme,witnessingaboutit. EllenMcDowellRugglesI'dlovetoseemoredonefor peoplewhonowsufferfromLymediseaseorwillinthe yearsahead.Adiagnosiswasalongtimeincomingfor me,andnowmyprimary'spreferredmedicationto treatmeisnolongeravailableatmypharmacy.Iknow morepeoplewhohaveexperiencedtheeffectsofLyme diseasethananyotherinfectionsordiseasesaddedup. Whyisthat,Iwonder?Greaterunderstandingisgaining ground,nowlet'sgetgoingwithbetterdiagnosingand treatment. LoriHoerlItwouldmakeaprofoundand groundbreakingmarkonthemedicalcommunityifthe IDSAwouldacknowledgetheexistenceofchronicLyme disease,theseverityanddevastatingpotentialofunder treatedanduntreatedLyme,andtheneedforopen endedtreatmentbasedoneachindividual'sclinical pictureandtheclinicalexpertiseofthetreatingLyme physicianwhoknowsthemostaboutthepatientand themostaboutdisease.Itwouldshattertheobstacles totreatmentwenowfaceiftheIDSAofficiallystated thatchronicLymediseaseexists,changeditsguidelines toendorseopenendedtreatmentsimilartotheILADS protocolandacknowledgednoonehasalltheanswers butthatsomehavesignificantlyeffectiveoptionsthat allinfectiousdiseasephysiciansshouldknowlikethe backoftheirhand.BecauseLymeisEPIDEMICand deservesthevalidation,researchfundingand aggressiveeffortstotreatitandbeatitequaltothose wenowseeforAIDS.Intheend,sickerpatients

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untreatedcanandhavedied.Thepublicneedstohear thattruthfromyou. LaurieBentleyChristesonRevisetheLymedisease treatmentsguidelinesneedmoreresearchonchronic Lyme&longtermtherapy&newreliabletesting.Need moreeducationfordoctorstobeabletodiagnose& treat. BonnieGilbertPleasestoplettingmoney,politics, popularityandembarrassmentdoharmtothepeople youhavesworntohelp.ReaddresstheLymeDisease guidelinessothatdoctorshavethepropertoolsto effectivelytreateachindividualpatientbasedontheir symptomsandmedicalneeds.Expandeducation programssothatalldoctorsfromallfieldscan recognizeLymeDiseaseandtheirpatientscanget propertreatment. JimPriceHowaboutnomoresecrets,tellthetruth! MichelleDeCiantisCollettePleasebegintoaccept ChronicLymeasaREALdisease!!!Mykidsjustlosttheir pediatricianbecausesheisn'twillingtogoagainstyour guidelinesfortreatment!NowIdon'tknowwhatto do!!I'mnotwillingtogiveuptheirtreatmentbutWHO willtheirPCPbe???Helpme!! JanChimchirianForLymeDiseaseandcoinfectionsto betakenseriously,notbecomeacashcowforthe medicalindustryandquackrheumatologists, neurologistsandotherspecialistswhosearchonlyfor whattheywanttotreat;usuallyCFSorFibromyalgia.I havedealtwithincrediblyarrogantandincompetent specialistsfortoomanyyearsnow,whenasimple courseofantibioticswouldhavecuredmeovera decadeago. VirginiaWuellnerWardPLEASErecognizetheexistence ofchronicLymedisease!Ihavehaditfor10years,with averifiedtickbite,positiveIgMtestandlowCD57 levels,plusclinicalsymptomsofLyme.Pleaserevise yourguidelinestoallowforlongerantibiotictreatment forchronicLyme. JenniferRoswellIDSAitstimeyoueithershutyour doorsordotherightthing.Thefactthatyouwillnot recognizetheepidemicofborreliaburgdorferi(Lyme)in thisnationisshamefulandembarassing.Itsnoteven science.Itstheflatearthsyndrome.Youundermine yourcredibilityinallareaswhenyouallowthistooccur.

SteveMayernickTakeChronicLymeseriously.Itisn'tin myhead.I'ma24yearoldformercollegiateathlete,I don'thaveMS,fibromyalgia,ANDchronicfatigue syndrome.Get.Real. ValarieMurphyIfjustoneIDSAguidelinewriter contractedlatestageLyme,everythingwouldchange. Volunteerasresearchsubjects,fellas. KathyObalCarlstromAstrongpublicawareness campaignregardingthetransmissionroutesofLyme diseaseandthevariouscoinfections(strainsof mycoplasma,babesia,bartenella,HHV6,andmany others)isdesperatelyneeded.Theseinfectiousdiseases areinmyopinionbothsexually&mosquito transmitted.Transmissionisnotlimitedtocertaintypes ofticks.Let'sassumetheymaybetransmittableby otherbitinginsectsaswell.Transmissiondoesnottake 36hoursbutjustamatterofseconds.Thedegreeof misinformationtothepublicisdangeroustopublic healthhereandinternationallysinceyourgrouphasa broadscopeofinfluence.Peoplehavearighttoknow thebasicroutesoftransmission.Moreresearchinthis arenaisneededASAP. ValarieMurphyHaveyouallseentheIBMWatson commercial.Computerassisteddiagnosis:Lyme.I'm bettingsomeoneatIBMinNewYorkhasLyme. http://www.youtube.com/watch?v=RWK v6e761M&feature=results_video&playnext=1&list=PLF AF617C5820A71FB JasmynCampbellwhenitcomestoLymediseaseand coinfections..quithurting,starthelping JulieSearcyAndersonIwouldhavethoughtignoring AIDSfor20yearswouldhavebeenalessonlearned.... MikeHitchIDSAmanup,chronicLymeistherealdeal andthankGodthattherearedoctorsouttherethat realizethisOBVIOUSFACT!Theyneedtobeableto practicetheirREALmedicineforthisREALcondition. IDSAneedstocomeintothe21stcenturyandrecognize Lymeandtickborneillnessesforwhattheyreallyare.Is itthebureacracythatcausesyoutobebehindthe times?Isitignornace?Isitpolitical(insurance companies,drugcorporations),whatisitthatsuchan obviousandterribleconditioncanbedeniedbya supposedlyreputableand,onewouldhope,cutting edgeorganizationlikeIDSA?It'stimetostopwiththe denialandgetmovingwithsomerealandplausible ACTION.

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intothatdrsofficewitharedrashandatickbitebut AmyJoSirianniAllowdoctorstotreatchronocLyme testednegativeforelisatesthadijustbeentreatedi withlongtermantibiotics.Pushforlegislationtoprotect doctors.Checkthesuccessofdoctorswhohavetreated woudnthaveruined3livesormydrorishouodsaythe chronicLyme.Believetheresearchthatshows IDSAyourobbedmeofadecadeofmylife,mybeautiful spirochetesenteringcells,andresidingthereforlong wifecrieseverydayinpainandmybeautifulprecious periodsoftime.Checktheresearchthatshowsthe daughterliveswiththisnightmare.Thisisnot'some threeformsofthebacteria.Understandthatmany discomfortthisishell.Painmedsdonttouchit,sleep cantithurtstomuchanditnevergetseasiereveryday multisytemdiseases,includingthosewhichdeplete isabattle.Pleasedontkillusslowlyanymore.What yourimmunesystem,needlongtermcare.TB,andAids happenedtotrustingdrstoheal.Changeisneededso tonametwo.Lymeisjustasserious,andcanbedeadly. muchofit Don'twaitanylongerinprovidingbacteriaridden peoplethebestchanceregainingaproductivelife. RandyGarvinWHATWOULDWEALLLIKETOSEE? IsaiahGoodwinIhavesufferedwithLymediseasefor 1.TheIDSAtorevieweverysingleoneoftheseposts, almostadecade,maybemore.Ilostthequalityofmy listen&changethewayyourecognizeLyme+co lifeandididgiveittomypregnantwifeandthenshe infections. gaveittoourunborndaughter.Wesuffereverydayin 2.TogetthedoctorsintheUStrainedbyaLyme somanywaysthaticouldnotwriteitallinoneday.Itis LiteratePhysiciansothefollowingstoriesonthe likehellifthereisone.Youwakeupandthinkhowami attachedsite+thepeoplewhoarenotonthissitewill nolongerhappen!http://www.Lymememorial.org/ goingtogetthroughanotherday.Howismywifegoing tofeeltodayandwhatismydaughtersfuture. KristineMarcelloHallLike SusiKasterGlaeserPleaserecognizethat mostpeoplehere...I'vebeen Ihave24/7tinglinginmy ChronicLymesdoesexist.Ihavehadto affectedbyChronicLymefor arms,legs,hands,electrical feelinginmyhead,random sometime,I'mCDCpositive stoptreatmentsincetheonlydoctors rashes,arthritispain,joint andhavebeentreatedbutifI whotreatusproperlydonotaccept pain,kneesruined,solesof weretreatedaccordingthe insurance. I believe YOU owe me myfeethurttowalkon,i ISDArecommendationsand thousandsofdollarsduetoyour liveinthebathroom,my didn'tliveinastatethat anxietyisoutofcontrol, enactedlegislationtoprotect ignorance.Letthisopenyoureyes... thosewithChronicLyme,I depressedneverthoughti don'tknowwhereIwouldbe! couldbeiwasalways PleaseISDAreviewyourguidelines,there'sanentire happy,iwasasemiproboxerandsoccerplayerperfect shapeandhealth.Igetallergictyperectionseveryday, populationsufferingbecauseyouwon'tadmityouwere immoodyandangrynow,shouldercantleanonit, wrong. sleeponit,insomniaallnighttiredallday,islurmy wordslikeimstupid,notrainofthought,cantspell SusiKasterGlaeserPleaserecognizethatChronicLymes anymore,dropthings,forgeteverything,nocirculation doesexist.Ihavehadtostoptreatmentsincetheonly inmycalfmusclesorhandsandthereissomuchmore. doctorswhotreatusproperlydonotacceptinsurance.I Testednegativeforthefakeelisatestbutthewestern believeYOUowemethousandsofdollarsduetoyour blotoverthephonetestednegativecdcdidntknow ignorance.Letthisopenyoureyes... enoughaboutitsoitrustedthetest,4yearsofgoingto thebestspecialistsintheworldnot'onedrcouldhelp KarenHartAcknowledgethatamistakewasmade me.Oneyearihadtolibewithbeingtoldihadms,2 "New,overwhelmingevidencehascometolight"or yearsihadfibroanddiagnosistakenbacktowedont somesuchleadinwouldbegoodtostartwith.We, knowgoontjisdepressiondrugandgetsomejoint thosesufferingwiththisdisease,don'tjustsitaround shotsandletmemakeyoubraindewdonlyricaand lookingforsomethingtoharrassyouabout.My gabapentenandgain30pounds. husbandwastestedforLymeonlyafterallmedicalhad failedandwewerepreparingforhimtodie.The InternalMedicinedr.thatorderedthetesteven Mywifealldifferentsymptomsthanmesameco allowedhimtobetestedwhilehewasonanantibiotic infections,sameillnesstheonoythingthatisthesame forasinusinfection.Ofcoursetheresultswere iewefeelliiewehavetheflueveryday.Ifwheniwalked

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negative.Anotherdr.testedhim14daysafterthe antibioticstopped,andhewaspositivebyCK. LymeDigestItistimetoupdatetheLymeDisease Guidelines!ChronicLymediseaseexists.Itisamazingto readalltheseposts.Pleaseconsiderthepatientswhen youimproveyourguidelines. NeilHueyTheISDAshouldchoosetoerronthesideof cautionintermsoftheirstanceonchronicLymeand "associated"tickbornedisease.Itisperfectly acceptabletochangeyourmind/opinionwithregardto thebodyofscientificevidenceasmoreclinicallysound informationontickbornediseasebecomesavailable. Additionally,insurancecompaniesshoulderronthe sideofcaution.Antibioticresistanceisavalidconcern, duepartlytotheoveruseofantibiotics,aswellas patientsafetyissuesinprolongedantibiotictherapy. Guidelinesandpowerwieldedbysuchentitiesshould notdictateprotocolnorleadtothepointofmedical licenserevocationfromthosewhohavedemonstrable knowledgeanddedicatedtheircareerstothosetreating tickbornedisease.Norhavethepatientslosttheir "ownrights"topartakeinthebenefit/riskdecision makingprocess? Patientsshouldbeallowedtobetreatedindividually upontheir: history/physical/presentation/manifestation/cascadeof healthevents,etc...fortheymayhavebeendisease riddenforyears.Manythingsplayintotheperpetuation ofconfusioninLYMEi.e.,Semantics:Lymevs"tick bornedisease"CDCrevision/distinctionofacceptable diagnostictests...misguided,lackofdistinctionbetween the"accepted"tests...diagnostictestsfortheclinical evaluationofapatientshouldhavemuchbetter sensitivity/specificity.Whyhasthisnotbeenchanged bytheCDC??? Similartosphylis(whichhasbeentakenseriouslyin termsofdeliterious,longtermhealthconsequences)in termsofitalsobeingaspirochette,Lymevery frequentlyisnottheonlypathogendeliveredduringa tickbitebabesiamicroti,bartonella...TheU.S.Center forDiseaseControlandPreventionisalarmedaboutthe rapidincreaseininfectionrates KarenHartCDCstandards.TreatmentbyanLLMDhas enabledhimtogetbackhislife,thoughtherestofour familyhasnowcomedownwiththedisease.Wewant educationforthedrs.,wewanteducationforthe public,wewantourlivesandhealthback.Beforeyou

windupinthesameboatwearein,joinusinfighting thisdiseaseandnotjustbeingastumblingblockonour roadtohealth!! ValarieMurphyOneofthesedays,therewillbeaclass actionlawsuit. NikiMitchellwouldliketoseetheIDSAtakeLyme Diseasemoreseriously,andrevisetheguidelines regardingit.Ihavespentmorethan5ofmy19yearsof lifewithLymeDisease...andonlyoneyearactually knowingwhatwaswrongwithme.Ineversawatick,a bullseyerash,orhadflulikesymptoms.Ihada negativeELISAandwesternblot.Ifonlyanyofthe25+ doctorsandspecialistsIvisited(beforefindingmy currentdoctor)hadbeenaccuratelyeducatedabout Lyme,maybeitwouldn'thaveprogressedtobethe chronic,debilitatingillnessitistoday.ButIamslowly butsurelyonmywaytorecovery...andIhavemydoctor whoworksoutsideofthecurrentIDSAguidelinesto thankforthat.Thesaddestpartisthatmystoryisnot alone.It'salmostidenticaltothatofnotonlymylittle sister,butanabsurdnumberofpeople.Pleasedo somethingtostopthatnumberfromgettinghigher. BethSchultzWow,Ithinkyougotyouranswer.LYME DISEASE!!!!!!!!!!!!PleasehelpusIhavebeensickfor7 years.ItestedCDCpositivefromthebeggingInowhave 9CDCpositivetestsstillnotoneIDDRinmyStatewill treatme.DOyouseeaproblemhere.Isuredo. MikeHitchhere'sthewaytocontactIDSAtheold fashioned way:http://www.idsociety.org/Contact_Us.aspx JessicaRainReal DonnaLeBlancsoomanypeopleincludingmyselfhave beenleftundiagnosedforyears,,,,Me10plus...sonow mybodyhavebeeninvaded!!simplyheartwrenching toknowallthesufferingcouldhavebeenavoided..If OurDr.'swereducatedbetter.Andstandaredsfor testingwerebetter.ANDDr.scouldtreatwithoutbeing harrassed...It'sashamepeoplehavediedformthis disease....andsomanymoreareleftuntreated...Isthis reallytheUSA...Ican'tbegingtotellyouhowmuch moneyIhavewastedonvarousetreatmentsthatwere allafarse...totrytogainmylifeback...Ihavelostthe meIusedtoknow..Idonotknowwhatadayislike withoutsomesortofpain,discomfort.Ican'tsleep well..It'sjustabigmess...YOUALLShouldbeashamed

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ofyourselves...Makesmesicktothinkaboutit...GET OURPEOPLEHEALTHYAGAIN!!!! MichaelWelchIwouldliketoseeyouguysfinally acceptthatLymediseaseisarealillness.Ihavethree friendswiththisdebilitatingdisease,anditishorrific. LoriBakerHansrothIDSA,please,admitthatyoudon't havealltheanswersandthatyoureallydon'tknowall thequestions.Openyoureyesandearsandlistento thepatientsandtheirfamilieswhoareonthefrontline fightingadiseasethatdoctorsandinsurancecompanies saydoesn'texistbecauseyourguidelinesallowit happen...familieswhohavelosteverythingandstill keepfightingandeducatingotherssothatitdoesn't happentothem.IDSA,it'stimetogethonestandreal aboutLymediseaseandtogiveittheattentionit desperatelyneedsbeforeitkillsevenmorepeople. DedeeSimmsMillageWhy,Igiveyoukudosfor asking...Addonemorerequesttoacknowlegeandtreat CHRONICLYMEDISEASE.Allfrustrationaside,ifyou reallycareaboutwhatthePUBLICwouldliketosee fromyou,weREALLYneedsomehelp.Bettertesting andtreatment.Ifyoucareaboutthehumanpopulation thisistheperfectchancetomakeachange.Wedon't carethatyou'vebeenwrongallthistime,startnow, makeadifferenceNOW.Intheend,we'llloveyouforit! Symptomsincreasingfor10years.TickbiteTHIRTY YEARSAGO!Inmyhair,sonovisiblerash(ifthereeven wasone).THANKYOU MikeHitchTheironyofitalltheIDSAhassomething goVIRALonthem!LOL. ShannonTraceyTakeonchronicLymedisease,which hasdramaticallyimpairedmyfather'shealthfornearly 20years. KendraStoneReviseyourguidelinesandstarttaking ChronicLymeDiseaseandChronicTickCoinfections seriously!ChronicLymediseaseDOESexist.Stopletting moneyandpolitics,doharmtothepeopleyouhave sworntohelp.Peoplearesufferingbecauseofthelack ofadequatediagnosisandtreatment.Championbetter testingandaccesstotreatment. JeanHemondItisoutrightcriminaltomaintainyour flawedguideslinesaboutLymeDisease.Thiswhilea numberofyourvotingmembersareinclearconflictof interestinbedwithdenialbenefitingmedicalindustry interest.

PamThomsonPleaserecognizeandacknowledgethat ChronicLymeDiseasedoesexistnotonlyintheUSA.It isworldwidenoweveninSouthAfricadespitethatour GovHealthDepartmentdeniesthisfact!Pleaselistento thosewhohavesufferedyearafteryearafteryearwith norelief.Itisalivingdeathandnoonedeservesto sufferthewayLymepatientsdo.Thedoctorswhohave gotitrightareharassedandpreventfromtreatingtheir patientswhoareactuallydoingwellontheirprotocols. PleasereaddressyourGuidelinessothatmillionsof peoplecangettreatmentsthatwork.Treatmentsthat addresstherootoftheproblemandnotjustmaskthe manysymptoms.Thankyou. DeniseJaffeHowaboutLymeeducationforALL doctors,sinceLyme(andcoinfections)exist EVERYWHERE!IwasbittenbyatickinSouthern California,removedthetickthewrongway,hadabulls eyerashthatexpandedaroundmyankleandupmyleg, hadapositivespinaltapformeningitis,wasflulikefor MONTHS,andthensufferedwithneurologicalproblems for11yearsbeforeImetaLymelitM.D.,andhetested meforLyme.Thetestcamebackpositive.ForyearsI wascalledcrazy,Iwassentforpsychologicalhelp,andI spentTHOUSANDSofdollarsoncopays,while insurancepaidmillionsofdollarsontests,scans,and UNNECESSARYexploratorysurgicalprocedures. Iwasneverondisabilitybecausewithoutanamefor whatIhad,"obviously",therewasnothingwrongwith me.OneminuteI'mfabulous,oneminuteI'moutcold tryholdingajoblikethat!IDSA.PLEASEHEARUS. Onyear#11,IfinallygottheI.V.antibioticsIneeded throughapiccline.Inowhad4BoardCertifiedLyme LiterateM.D.'swhoconcurredIneededatleastsix monthsoftheabx(Rocephin).Insurancecutmeoff after30days,eventhoughIwasdoingbeautifully. InsurancecoveredthepicclinesuppliesandtheHOME VISITSFROMTHENURSEFORSIXMOREMONTHSBUT NOTTHEANTIBIOTICSTHATGOINTHEPICCLINE.I relapsedtheweekIwastakenofftheabx.PLEASEHEAR US. Yes,I'mtoldI"don'tlooksick".Ialsodon'ttakeand postpicsthedaysIamunabletowalkacrossthe room...orthedaysmybloodpressuredropssolowIam ontheflooruntilsomebodyfindsmeandphysically picksmeup.Idon'ttakepicswhenIaminmyneck bracebecauseIcan'tholdtheweightofmyhead.Idon't postpicsfromtheCardiologistsofficewhileIambeing checkedformyscarystrangeheartbeat.Idon'tpostpics whenmyeyesdroopfromweakness.Idon'ttakeor

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LizKarkoffIwouldliketothinkoftheIDSAas"my postpicswhileIamatUCLAandCedar'sSinaigetting society"butthatwouldbeimpossible.WhenIfirst myliverlesionscheckedoutthosepeskylesionsbulging becamesickinthesummerof2006Iwenttoseethe outofmyribscausingpainthoselesionsthatwerenot doctorwhoisprobably_the_mostprominentIDSA therebeforethetickbite,butnowtherearemorethan 20,upto8cm.Nowthereisoneonmyspine.Idon't Lyme"specialist."Ipresentedwithobvioussymptoms postpicswhentherashflaresup.Idon'ttakeorpost ofLymeandehrlichiosisandhetoldmethatIhada picswhenIamlethargicfromfeversshallIgoon??? virussincemybloodtestswerenegative.Whenmy symptomsdidn'tresolveafterafewmonthsIwastold P.S.IalsoappealedthedecisionfrominsuranceTHREE thatIshouldgoseeapsychiatristtogethelpwithmy psychosomaticissues.Ifeelsoluckytohavefounda TIMES.Trydoingthatwhileyouareweakwiththepicc knowledgeableLLMDwhoisbringingbackmyhealth.I linestillinyourarmHOPINGforthedecisiontobe wishthesameforeverypersonouttheresufferingfrom overturned.Thankyouforlistening. chronictickbornelillnesses.Somedaythetruthwill comeoutandpatientswillgetthepropercarefortick TrishaAnnKeltonCollinsMychildsufferseverydayand borneillnesses.Ican'tunderstandhowsomeonewho ITISLYMEDISEASE.Justlisten&makechangesonthe hastakenanoathtoprotectpeople'shealthisactually wayyourecognizeLymediseaseandcoinfections. doingthepolaropposite.It'sadisgrace. JessicaRainRealizethatyoursystemiscorruptwith DedeeSimmsMillageBTW,I'minColorado(from conflictsofInterestandantiscience.Wethepeople California),andeverybodyknows,wedon'thaveLYME havesufferedatthehandsofyouroutdatedguidelines inColorado.WEDO.Andletusknowifyoudecidetore forfartoolong.Takeyourgreedyhandsoutofthe evaluatethissubject.AlotofuswouldfeelSOMEsort insurancecompaniespocketsandcareforpatients ofpeaceknowingyouarelistening. withouthesitation.Realizethatothercountriesadopt yourguidelineswithoutquestion.Thespreadof LynneNovakHarmelinYouallattheIDSAknowwhat misinformationandfearyouhavecreatedisfar reachingandharmful. needstobedone.Nowdotherightthing. DannyTroyeRiveraAcknowledgeandeducatedoctors ClairSmithIwouldliketoseetheIDSAhavehonesty regardingchronicLyme ontreatingtheveryreal ClairSmithIwouldliketoseetheIDSA disease.Yoursuppressionof threatthatischronicLyme thetruefactsofthisdisease Disease.Thediseaseisthe havehonestyregardingchronicLyme whichisgrowing mosthorrificthingI've disease.Yoursuppressionofthetrue exponentiallyandmuch witnessedandendured factsofthisdiseasewhichisgrowing fasterthanAIDShascaused myself.Thesufferingcannot exponentiallyandmuchfasterthanAIDS immeasurablesufferingand bedescribedinwords,and painforhundredsof thenumberofvictimsis hascausedimmeasurablesufferingand astronomical.Itisabsolutely thousandswhoarenotbeing painforhundredsofthousandswhoare absurdtoignoresuchan treatedproperly.Everhearof notbeingtreatedproperly.Everhearof incrediblethreattothe coinfections?Theycan'tbe successfullytreatedin3 vitalityandhealthofhuman coinfections?Theycan'tbesuccessfully weekseither.Youcan't beingsanditneedstobe treatedin3weekseither.Youcan't ignorethefacts.Theyare addressedandfoughtagainst ignorethefacts.Theyarestubbornthings stubbornthingsjustlike accordingly.HIVgetsthe justlikethoserottenspriochetes.Your thoserottenspriochetes. recognitionitdeserves,MS Youromissionoffactsand does,Lupusdoes,cancer omissionoffactsandcommissionoflies commissionofliesgoes does,butLymeDisease goesagainstyourhypocraticoath.First, againstyourhypocraticoath. simplygetssweptunderthe donoharm.Havemercy,IDSA. rugdespitebeingalife First,donoharm.Have threatening,liftaltering,and mercy,IDSA. absolutelytraumaticdisease. Thisisunacceptable. NancyBaumgartnerPleaselistentothosewhoafter yearsevendecadesofmisdiagnosisand/orinadequate

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treatmentforBorreliosis(andcoinfections)whenthey reportwhatfinallybroughtanswersandrelieffrom theirphysicalandpsychologicalmisery.Pleasereview andmodifyLymediagnosisandtreatmentguidelinesso thatpeoplecanfreelygeteffectivetreatmentanddocs whohealhavenothingtofear. LibbyFosterFirst,IwouldliketheIDSAtolistentothe peoplewhohaveLyme.Second,Iwouldliketosee moreawarenessaboutLymediseaseitaffectsand infectsmorepeopleeveryyearthananyotherchronic infectiousdisease.ChronicLymeisreal.Iknowit'sreal andmymotherforover40yearsdefinitelyknowsit's real.(FromWisconsin) NeilHueyYour(ISDA)argumentofchronictickborne disease"notexisting"doesnotholdupscientifically.As Nikistatedinhercommentmomentsago...shenever sawatick,hadabullseyerash,orflulikesymptoms.So forargumentssake,let'sassumeshedidgetbitbyatick whichdeliveredvirulentborelliaandpossiblyother virulentpathogen(s).Severalyearsgobyandshe presentswithamultitudeofhealthissues.Hasthat typeofpatientbeenincorporatedintoanydouble blinded,placecontrolled,randomizedclinicaltrials? Itrusttheanswertothatisprobablynotandthe argumentmaybe...thatitwouldnotbeethicalto purposefullyinfectsomeonewithavirulentpathogen(s) oneofwhichisacousintosphylis!Howcanyouthen saythatchronictickbornediseasedoesnotexist?How areyouasanIDphysician(oranyphysician)evengoing tobegintomakeadifferentialdiagnosisletaloneone basedonsounddiagnostictestresults?Andifyoudo getapositiveWesternBlot,whatothertestswillyou runtorulein/outothertickbornedisease?And...can thosepathogensbeeasilyculturedsothatyoucan determinewhatantibiotictouse?Areyoubeginningto realizethatpeopleotherthanphysicianstreating chronictickbornediseasecanhaveclinicallysound opinionswhichhavescientificmeritandcandifferfrom yourown? JohnWilguessThankyouforasking.Iwouldliketosee aunifiedefforttounderstandandtreatLymeDisease andthecoinfections.InOklahoma,weweretold directlybyspecialistsinyourfieldthatLymedidnot existinOklahoma,thereforetherewasnoneedtotest foritandcertainlynoneedtotreatmythen15yearold daughter.YetItalkedtoveterinariansandtick specialistsatOklahomaStateUniversitywhostudy LymediseaseinwildlifeandpetsinOklahoma.Sothe

standardforunderstandingitsspreadandits transmission,withinyourspecialty,seemstobetrailing thatofotherdisciplineswhichtreatanimalsforit constantlyinaplacewearetolditdoesn'texist.Both circumstancescan'tbetrueisn'ttheaimofscienceto resolvethesekindofquestions?DoLymeinfectedticks existinOklahomaandthereforehavethecapacityto spreadthediseasehereorareveterinariansmistreating thousandsofanimalsinOklahomaeveryyear?Our daughter,andthousandsofothers,arejustaskingfora realisticresponsetotheirveryrealinfections.Please help! DanaRiveraJustsawtheIDSAquote.Recentarticles fromsomeoftheIDSAstopLymeguyscallLyme patientadvocatesathreattopublichealth.Whyare weathreat?Isitbecauseweknowandhave experienceddsomethingsohorrificyouhavetokeep thegeneralpopulationinthedark?LetLyme"outofthe closet"arlready! MichaelParentThanksagainforgivingusallthis opportunitytovoiceourinterestsintheIDSA's upcomingyear.I'dliketoaddonemoreissueofgreat interest.Iwouldliketoseephysiciansbettereducated ontickborninfectionsingeneral.Itisalltoocommon togotoaphysiciansofficewithacleartickbite,andto hear"Ok,I'llorderanELISAinafewweeksandlet's startyouonanantibioticforLymeDisease."The controversyasawholehasnothingtodowithwhatI'm requesting,asI'msureyoursocietyandmany physiciansreadingthiscanattestto.OurfocusonLyme Diseasehascompletelyovershadowedconsiderations forinfectionsthatareontherise,suchasBabesia, RockyMountainSpottedFever,andotherwell establishedinfectiousdiseasesthatdon't"always" requireanantibioticthattargetsbacteriumalone,but mayalsorequireantiparasitictherapies. Iamwellawarethatyoursocietyhasbeenundertaking researchonsomeoftheseissues,butphysiciansneed tobeclearthatiftheyseeatickbite,orLymeDisease, oranythingremotelyresemblinganytypeofinfectious diseasethatiscommontoticks,thentheyneedto considerthebroaderissuesathandratherthanfocus ononlyonething,likeLyme.Yourresearchlatelyhas cometothesameconclusion,sopleaseadvocateon behalfofpatientsandphysiciansthatwherethereisa tickbite(orsuspectedbite),physiciansshouldthink "Tickborninfection,notjustLyme."

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AlbertWhiteheadiwatchmywifesufferhorriblyevery dayallbecauseofyourflawedguidelinesandpoor testingforLymediseasethisiscrimminal! BeccaEpsteinIwouldliketoseemorerespectforLyme patientsasrealpeople,whosufferandfeellike everyoneelse.Almostnoneofusaremakingitup,or stupidenoughtobehoodwinkedbycharlatans,or whateveryouguysthinkgoeson.Weareactuallysick, andwewishyoucared.Thisisntaboutmoneyorpolicy. It'saboutpeople.Andlives. AnniGarrettDon'tallowHealthInsurancetodenyLyme applicantstobeinsured!Makethempayfortheir treatments. NeilHueyDidn'ttheCDCjustsponsoranewlawbeing passedDecember17,2011,becauseofLymenow becomingepidemic?Somethingtellsmethisacuteand possiblychronicinfectionwillnowbereceivingthe attentiondueintheupcomingmonths. MichelleKoppCHANGE!!!Ifamemberoftheboard couldjustbemeforonedaythatwouldbeallitwould take.Pleasedon'tignoreusanymore.Wearereal people:kind,lovingandyes,fighters.Pleaseopenyour heartstous. ValarieMurphyMedicalCollegeofWisconsinjustgot anNIHgranttostudyLymeprotein.InspiteofIDSA, we'rehavingalittleprogress. NicoleMayosameasthesepeople. BethPearlSchwartzYourcurrentguidelineshavemade thepasttwoandahalfyearsanightmareforme.Iam notexaggeratingwhenIsaythatIhaveevenconsidered endingmylifeduetothehorriblepainandsymptoms. Thereisnothingworsethanbeingtoldyouneedtosee apsychiatristbydoctorsyouhavetrustedandseenfor years...justbecausetheydon'tunderstand(oraren't allowedtotreat)chronicLyme. It'snotfairthatItestedCDCpositiveforLyme,but cannotgettreatedinmyownstate!Andaddtothatthe factIhavetopayformyappointmentsandtreatment outofpocketit'snotrightatall!!! Pleasedotherightthingandreviseyourguidelines. Educateyourselvesandthemedicalcommunity.Please listentous!

FaithStricklerIwouldliketoseearecognitionofthe seriousnessofLymediseaseamongthemedical community. Iwasbitbyatickandthreeweekslaterbecamesick withflulikesymptoms.Mysymptomsneverclearedup andafterjusttwoweeksIhadobviousneurological involvement. MyWesternBlotcamebacknegativebutIKNEWIwas sickandIKNEWfromdaysanddaysofresearchthatI hadLymedisease. Standardmedicalpracticesaysthatjustafewweeksof antibioticswillclearupLymediseasewithnoproblem. Well,here'stheproblem:after8weeksofantibiotic treatmentIstartedtoseeimprovement.HadIstopped afterthreeweeksIwouldhavecontinuedtogetveryill. Ithasbeen8monthsnowandIamstillnotbetter.Iam GETTINGbetter,butIamnot100%yet. ValarieMurphy @JohnWilguess,averythoughtful post.IgotLymeontheNEOklahoma/Arkansasborder. Threeothermembersofmyhusband'sfamilygotittoo. StephanieNeidigChronicLymediseaseexists.People aresufferingonadailybasisbecausedoctorsdonot understandthediseaseandinsurancecompaniesare shuttingdowndoctorsthatdounderstandthedisease andtreatitaccordingly. DarleneMcMahonWorkTOGETHERwithLyme specialistsandILADS.Droptheegos. AmandaBernThankyouforasking.Afinding,writtenin clearlanguage,inaprominentsectionoftheLyme guidelines,whichacknowledgesthepresenceof researchindicatingthatthescienceofthediseaseis conflictingatbest,thattheIDSApanelcouldnoteven agreethetestingisreliable,thattherearetwo standardsofcare(ILADSandIDSA)andtherefore treatmentofthediseaseshouldbelefttophysician discretion.Also,apressreleasestatingthe aforementionedwouldbehelpful. SarahJeanIwanttheIDSAtoaggressivelyresearchand treattickborneinfectionsthesameasAIDSorSyphilis. Tobelievethattickborneillnesscan'texistinall states/countries/territoriesisbeyondridiculous.People travel.Animalstravel.Wearenotidleandstationary

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AlisonTbaumIwouldliketoseetheIDSAtakeLyme beings. Diseasemoreseriously,andrevisetheguidelines regardingit.Ihavespentmorethan10ofmy23years Doticksseeastateborder/street/whateverandstopto think,"Oh,Ican'tpossiblycrossthestreet,becauseI oflifewithLymeDisease...andonlyoneyearactually won'tbeabletoexistoverthere..." knowingwhatwaswrongwithme.Ineversawatick,a Ridiculous. bullseyerash,butIhadmanyotherclassicsymptoms.I hada2"falsepositive"ELISA,1"falsepositive"western blotIgMandone"falsepositive"IgGbeforeIwas JoanE.NielsenInDenmarkourpoliticanssaywefollow diagnosed.IfonlyanyofthedoctorsandspecialistsI IDSAguidelines,andLymewithcoinfektionsisavery visited(beforefindingmycurrentdoctor)hadbeen bigproblemhereinEuropetoo,manyismisdiagnosed becauseofusingtheELISAtestastheonlytest,a accuratelyeducatedaboutLyme,maybeitwouldn't negativetestnotreatment,andifthetestispositivewe haveprogressedtobethechronic,debilitatingillnessit mustbeluckyifwecanget10daysofantibiotic,most istodayandIwouldn'thaveneededaPICClineand6 docsdon'tevenknowwhattosayordoforus. weeksofIVRocephin.ButIamslowlybutsurelyonmy waytorecovery...andIhavemyLLMDtothankforthat. Nowwepayforbettertestingandtreatmentinspecial centersinGermany,thetestsshowschronicinfektions ThesaddestpartisthatIamnottheonlyonewhohas andthelongtermtreatmentishard,butitworksvery hadtogothroughthis.Mystoryisalmostidenticalto goodformostofus.Idon'tknowwhatweshouldhave thatofanabsurdnumberofpeople.Pleasedo donewithoutthoseGermanLymedocs,butnotmany somethingtostopthatnumberfromgettinghigher. danescanaffordthisandwecan'ttoo,housesmoney PleaseallowmetogetthetreatmentIneedtolivethe goneandthebankwantfeesfromourloan.. lifeIwant!DROPYOUREGOABOUTLYMEDISEASEAND LETTHEPEOPLEWHONEEDHELPGETITWITHOUT Pleaselistentoallthosepatientsinyourowncountry FEAR!!! andusinDenmarkandeveryotherEuropeancountry too,weareverydepended ElizabethHenriksenCarrierMy onyourdecisionabout lifehasbeentotallyaltered ElizabethHenriksenCarrierMylifehas yourguidelines.Belivethis it'soriginalpathbecause beentotallyalteredfromit'soriginalpath from isreal,butanearlybetter ofLymediseaseandit'sco becauseofLymediseaseandit'sco treatmentcanprevent infections....Iamnolongerthat yearsofproblemstoyour infections....Iamnolongerthatperson...I person...Iwouldliketobe helthcaresystemand acknowledgedandnotswept wouldliketobeacknowledgedandnot reducesufferingand awayanylonger...chronicLyme sweptawayanylonger...chronicLyme expensivemedicinforthe doesexist...theguidelines doesexist...theguidelinesneedtobe needtoberevised.....Iwould Lymepatients! revised.....IwouldlikeallDr'stohavethe likeallDr'stohavethereal factsaboutthisepidemicand KaterinaBaboulasLyme realfactsaboutthisepidemicandtheir theirrightstotreattheir CfidsLymepatientsare rightstotreattheirpatientsastheysee patientsastheyseefit...for DYING.Pleaseconsiderthe fit...forthesethingstohappenIfeelthat thesethingstohappenIfeel ILADSdoctorsguidelines thatego'sneedtobechecked andtreatmentsastheyare ego'sneedtobecheckedatthedoor& thedoor&makeitillegalfor havingsuccesswiththeir makeitillegalforanyonetoprofitinany at anyonetoprofitinanyway patients.1monthofanti wayshapeorformwhoispartofrevising shapeorformwhoispartof microbialsafteryrsof revisingtheguidelines....I illnessifaslapintheface theguidelines....Iwouldlikethemto tothoseriddenwith wouldlikethemtowakeup wakeupandhearuswhoaresick& disease. andhearuswhoaresick& sufferingandforthemillionstocomeif sufferingandforthemillionsto theycontinuetoignoreourcries.....please comeiftheycontinuetoignore ErikSkitchMatson changingtheguidelinesfor ourcries.....please Lymediseasesoitcanbe diagnosedandtreatedinamoreadequatemanner.

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JamieKaneAccurateguidelinesforthetreatmentof Lymeandconfectionsputintoplaceaswellas educationalprograms.Therearehoardsofpeople needlesslysufferingdayafterdayandyearafteryear. BethPattzIwouldlovetoknowwhytheadminofthis pageiscensoringallofmyfriendswhenwejustwant theTRUTHaboutLymetobetold?THISISAMERICAlast Ichecked! JenniferSchierholtPleasegivepeoplesufferingfrom tickrelatedchronicinfectionsthesamecare, considerationandrespectthatyougivetothose sufferingfromHep,TB,STDsandAIDS.Doweneedto enlistthehelpofacelebrityspokespersonbeforeyou'll takeusseriously?Dowhatyouroathrequiresyouto do.Ifyouareunableorunwillingtodothat,pleasestop hamperingtheeffortsoftheotherdoctorswhowill. DeiWaltenbaughBilunkaTreatmentandEducationfor LymeDisease! DougyLymeyAsaphysicianwhohadanengorgedtick biteandbull's,andtoldbyanID,Idonotneedtobe treatedbecauseElisascreenisnegative,IfeelthatIDSA guidelineshavecreatedalargenumberofsick untreatedpatientswhohavechronictickbornedisease. Thiswillberecordedasasevereinflexiblestancewith graveconsequencesbyIDSA. BrendaKingTreatLymeDiseaselikeanyotherdisease. Also,treatLymepatientsthewayyoutreatotherswho arebattlingtheirdiseases.Whywouldyouturnyour backonsomanypeoplewhoaresufferingdayafter day,yearafteryear?Iwatchmysisterandherhusband fighttogetthrougheachday.Whydon'tyouwantto helpthem?Itjustdoesn'tmakesense??Whatreallyis soscareyaboutlearningaboutandtreatingLyme Disease?Somanymorequestionsbutwillstopfornow. GaryTraceyLymediseasedoesexistandhasforover TwentyyearsinCt.IthastakenoverFifteenyearsfor metogetbetter(notover)Lymethankstoa"Lyme DiseaseDoctor"inCt.PleasehavetheIDSAchangeand acceptchronicLymedisease. MarthaPriceNeedwekeeprepeatingourselves?LYME DISEASE!!! DebbieSeverinsonBecauseofyourguidlines, thousandswilldieandmanymorewillsufferneedlessly wiiththisextremelydibilitatingdisease.Ittakesitstoll

onapersonineverypossibleway:physically,mentally, emotionallyandfinancially.Ibegyoutorememberthe oathyoutookasdoctorstodonoharm.Youhavethe abilitytohelppeopleandsavelives.Whydoyouinsist ondenyingthatchronicLymeisreal?whydoyouallow thepoliticalgreedofinsurancecompaniesto underminetheoaththatyoutook? JulieSearcyAndersonIDSA:I'mguessingthatself preservationandfearofafirestormofclassaction lawsuitsispreventingyoufromadmittingthatyour guidelinesarewrong.So,thatbeingsaid,mypleato youistomakethehumanandmoraldecisiontoadmit yourmisstepsandhelpthesepeople.Alessbold approachwouldbetothrowyourhandsintheairand letthepeoplewhoDOcareandhaveanaccurate understandingofLymetakeover.Iwouldtakeeither optionatthispoint. ChristineKellerMaine,Iknowdozensofsuffershere includingmybrother,andseveralclassmates,and familyinMAandonCapeCod.Lymefolks,postyour states/countriessothattheyhearyournationwidecall! Thisisanationalandworldwidepandemic.Iequatethe IDSAtoHitlerandhismassmurderingofmillions,thisis NODIFERENT!TheIDSAisdestroyinglivesandfamilies, andthecauseofmillionsinunneccessarymedicalbills, familylivelihoodslostandpeopleputinpoverty,and certainlyamultitudeofdeaths!Itistimetoendthe corruption.NOW.Today! GingerBookerStoptellingpeopleLymediseaseonly existsinNewEngland.AcknowledgethatchronicLyme diseasesymptomshavebeenrecordedinsome individuals. JulieLantAcknowledgethefactthatChronicLyme Diseasedoesexistanddosomethingaboutit!People aresufferingandneedhelpandwhentheyturntoyou, youturnthemaway!Helpendthesufferingplease.Do youreallycarewhatthepublicsaysorareyougoingto sweepthisallundertheruglikeyouhavenumerous otherpiecesofevidencefrombefore?Provemewrong andtakeonthechallenge.Howcanyouignore700plus peopletellingyouthatsomethingneedstobedone? KarenJScrepetisUpdateyourLYMEDISEASEandCO INFECTIONprotocolsandguidelinestoreflectCHRONIC LYMEDiseaseandCOINFECTIONS?THATallproviders beallowedtoenacttreatmentprotocolsthatvaryfrom yourincidiousguildlinesandthattheywillNOTbe SANTIONEDforbeingLDproviders?Gostraighttothe

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community. WesternBlot?BecauseoftheIDSA...andYOURancient guidelines...Ihavepermanantneurodamagefrom SupportfromIDSADoctorsandinsurancetostepupto LymeDiseaseANDcoinfectionsbecauseIalreadywas bornimmunecompromisedandinitiallywas theplate misdiagnosedmyNONLLDprovidersbecauseofyour guidelines?HowmanyLymepatientsmustsuffer DonnaZukaitisFalcone @ChristineKeller...goodidea! becauseofyourblunderingidiocy? PENNSYLVANIA! ItisNOTONLYTHELYMEtests...BUTtheprotocol TracyHamerWillPleaseacknowledgethatChronic guidelinesshouldcheckforcoinfectionsattheSAME LymeDiseaseDOESexist.Please,pleasehelpusand TIME?IWAS(andstillambeing)TREATEDforLyme stopfightingagainstus.Wearenottheenemy.Weare Diseasecancoinfections;andallthewhilewent thevictimsoftheleadinginfectiousdiseaseinAmerica today,yettheveryinternationalsocietythatis untreatedforcoinfectionsbecauseofISDA'signorance! supposedtobeonthecuttingedgeofresearch, NonLLDprovider'sNEEDtohaveknowledgeofthe truthoftheseverityofTICKcoinfectionsANDthe diagnosis,andtreatmentguidelinesisleavingusbythe chronicdiseasestate.Getreal!It2012anditisasifyou roadsidetodie. arestillstuckinthe19thcentury.:( Ourinsurancecompanieswon'tpayforourtreatments AmyWhatsitoyaIwouldliketoseeanIDSAwiththe becauseyousaywedon'tneedmorethanamonth's worth,despiteloadsofresearchdisputingthis,sowe utmostintegrity.Getridofthemembersthatpander die. to,andprofitfrom,bigpharma/insurancecompanies.I knowmedicineisabusiness,buthurtingand/orkilling Doctorsdon'twanttotreatusbecausetheyare peoplewithtaintedLymeguidelines?HadIhada shunned,investigated,harassed,andcalledbeforethe physicianthatwasn'tafraidofpersecutionbecauseI medicalboardduetoyour wastreatedproperly,I TeresaLuttrellI'dliketoseeIDSAstop guidelinesandtopdogs,sowe mightnotbedisabled die. today. workingFORtheinsuranceindustryand changeyourguidelinestoreflectthe Wepayoutofpockettoseek KellyPattonNanneyIDSA treatmentLymepatientsreallyneed. pleasebegintomake treatmentbecausedoctors Manyhaveandcontinuetosuffer changesinhowLyme whotakeinsuranceendupon diseaseistreatedand watchlistsandinfrontof becauseoftheIDSA.Shameful. diagnoses medicalboards,sowego bankruptandcan'tfeedour ToddAlshouseupdatetheLymelaws!!!theamountof children,andloseeverything.Orwedie. personalfriendsandfamilymembersihavetowatch sufferduetothefailuretorecognizeLymeforwhatitis Wedon'tgetdiagnosedquicklyenough,sothereislittle isgettingridiculous!Lymeischronic,andanyonewho hopesometimesforustogetbetter,sowelivewithno saysotherwiseispartofaninsurancecompany. qualityoflife,bedridden,disabled,unabletocarefor ourselvesorprovideforourselves,inconstantpainand PeriMersonSatin "Whenyoumakeamistake,don't innoendinsight,sowedieatourownhands. lookbackatitlong.Takethereasonofthethinginto yourmindandthenlookforward.Mistakesarelessons Youhavethepowerthisyeartobeginthechangethat ofwisdom.Thepastcannotbechanged.Thefutureis wouldendtheendlessagonyforus.Morepeopleare yetinyourpower."(HughWhite)RevisetheLyme afflictedbythisdiseasethananyotherdiseaseonyour guidelines.Educateandenabledoctors.Getinsurance agenda.Helpus.HELPUS.Makethisyearbetheyear companiestopayfortreatment.Raisepublic youdosomethingto"discover"somethingnewthat awareness.FINDACURE! ChronicLymeexistsifyoumusttosaveface.ButHELP US.Stopusfromsuffering,takingourownlives,going SylviaMccarthaIwouldliketoseearecognitionofthe homeless,withoutfood,clothes,andlivinginagonizing painanddepressioneverydaybecauseNOONEWILL seriousnessofLymediseaseamongthemedical TREATUSorwecan'taffordthedoctorswhowill.

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Thisisanatrocityagainsthumankindoftheworst degreethathasbeenseenincenturies.Youmustreach downdeepandrecognizewhatyouaredoingtopeople andSTOPIT.Ifanyofyouhaveashredofhuman decency,dowhatyouknowyouhavetodo...stopthe propaganda,stopworkingsohardfiguringouthowto keeptheshamgoing,andjustHELPUS. Itwon'tkeepgoingforever.Newer,youngerdoctors willcomeonwithethicsandconsciencesandthey won'ttowthepartylineanylonger.Ipersonallyspoke tosomeofthematyourannualconferenceinBostonin October.ThisWILLend.Youcanstartoffthenewyear strategizingthebestwaytoenditinyourfavor.Just endit.Wedon'tcarehow.Wejustneedtreatment.We wantthesufferingtostop,ourchildrentostopcrying, ourfamiliestostopsuffering. NeilHueyMywifepickedupLymeandothertickborne diseases,whichturnedchronic,intheOuterBanksof NorthCarolina.Ofallplaceswhowouldeverguess?! Butthen,thenorthernmostpointofLongIsland,NY, Montauk,hadwarningsignspostingRockyMountain SpottedFever.Iguessthosepeskylittleticksweren't toldtostayintheRockies.We'vegotaproblemwith tickbornediseasefolks...continuetospeakuporwe willneverbeheard. KerriTolbertLookatthefactswecangetbetterwith treatment.LymelikeSyphillisrequireslongterm treatment! DonnaZukaitisFalconeChristinehadagreatidea! "Lymefolks,postyourstates/countriessothatthey hearyournationwidecall!"Whereareyoufrom? TomEastonI'manotherLymesuffererwhois recoveringnicelyandnearlybacktonormalafter treatmentfromaLymeLiterateDoctor.TheIDSA affiliatedinfectiousdiseasespecialistthatIpreviously sawtoldmeIwasadequatelytreatedwith3weeksof DoxycyclineandthatIhadmycontinuinglethargy,brain fog,andarthritiswas"postLymediseasesyndrome".I hatethatdoctorforwastingyearsofmylifethinking therewasnothingthatIcoulddo. KathleenDicksonIwouldloveforsomeoneatIDSAto explaintouswhatOspAwas. http://www.actionLyme.org/ 120102;LamestreamNews(WaPo)reportsthatLyme andLYMErixareimmunosuppressive. www.actionLyme.org

MakeaTLR2agonistbotsowecandoawaywithticks andfungalimmunesuppression. KristieLohrerHuntsvilleAlabama RobinStewardLikesomanyothers,myteenage daughterhassufferedandgoneundiagnosedand untreatedformanyyearsinOklahoma.Acuteand ChronicLymediseasearereal!andneedtobe recognizedbythemainstreammedicalcommunity.Itis ashamethatmydaughterhashadillnessafterillness andsignificantchronicpainthatpotentiallycould've beenshortenedorpreventedifthisdiseasewas recognizedandtestedforproperly!Itisalso unfortunatethatinsurancerarelypays.Allofthiscanbe changedifyoutakestepstomakeithappen!PLEASE HELP! TaraHulkoFortheIDSAtolookattheILADSresearch forLymeDisease.Iwouldlovetoseebettertesting.I wasleftillbecauseIhadacoinfectionofbartonellathat turnedoffmyantibodiesforapositiveLymetestleaving meunabletobetreatedandIwasleftdisabledfora longtimetillIpaidoutofpocketfortreatment.The guidelinesandtestingareflawedandpeopleare becomingdisabledanddying.OnceuponatimeHIV andAIDSweretheLymeDiseaseoftoday.Mostofus arenotaskingforradicaltreatmentsbuttoallow doctorsbettereducationandtestingwhatyouhaveis outdated.Ifmedicineisn'tallowedtoevolvewewould stillbebloodlettingforcures. WeneedafocusonLymeDiseasemystateof Pennsylvaniaisnow#1forcasesit'sonlygettingworse, notbetter.Especiallywiththeticksin2birthcycles makingSpringandFallhighrisk.AndnotjustLyme DiseasebuttheCoinfectionsaremosttimesworse thentheLyme.Examplesarebartonella&babesiafor example.Istilllivewiththedamagedonetomybody andliveinseverepainandfatigueandsufferfrom tremorsfrommyruinednervoussystemallbecausemy doctorcouldn'ttreatmeproperly.OhdidImentionmy 87THOUSANDDOLLARHeartSurgery?!? KellyPattonNanneyBothourchildrenhavebeensick for5years.wehavespentsomuchmoney,itis unbelievable!!!!Theyaregettingbetterbutitis becausewehavebecomemedicalexpertsourselvesto ensuretheycontinuetomakeprogress.Itjustdoesn't seempossiblethatwecouldhaveinsurance,payour premiumsandthenbedeniedateveryturn.hundreds ofthousandsofdollarswhenyouaretalkingabout2

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childrenbeingsick.Almosteverythingoutofpocket, iv's,perscriptions,injections,supplements,etc. MyhusbandandIhaveafairlysuccessfuldrapery [kellysdesignerdraperies.com]butwecouldnevermake thekindofmoneythatitcosttokeepour2kidsgetting better.Wehadtomovetoanotherstateinwhichthey bothhadpicclinesandrecievedivinfusionsfor7 months.IDSAifyouarereadingjustimaginehowthis wouldaffectanyfamily.ThankfullymyhusbandandI arestilltogetherandnotgivingupbutwearewayout ofmoneyandatsomepointwillhavetolowerour standardsevenmorethanwealreadyhave.Pleasebe willingtogobacktothedrawingboardsothatfamilies likeourscangetsomesupportthatwillsomehow influenceourinsurancecompanytostepupand reimberseusforallthatwehavespent.IknowIam talkingaboutmoneybutitissuchacontributertothe painandsuffering.WeliverightnexttoSt.Judewhere nochildiseverturnedawayforcancertreatment becauseofaninabilitytopay.Suchaslapintheface whenwehavewatchedourkidslosestaminaand endurancetolivelife. TheresaBriccettiIwouldliketoseeLymeDisease treatedlikeallotherchronicdiseases.Iwouldlikethe IDSAtoacknowledgeChronicLymeDiseasedoesexist.I inviteanymemberoftheIDSAtospendadaywithmy husbandandthentellmethatChronicLymedoesnot exist.Thelastthreeyearshavebeenanightmare.We neversawatick,heneverhadabullseyerash,henever had'flulikesymptoms',butbecauseofLymeDisease hislifehasbeendrasticallychanged. KathleenDicksonIDSAdoesn'tadmitwhatTLR2 agonistslikeOspAorLYMErixdoestotheimmune systemlikeactivateEpsteinBarr. MaryLeeSeamanchangingtheguidelinesforLyme diseasesoitcanbediagnosedandtreatedinamore adequatemanner. KathleenDicksonILADSdoesnotknowwhatthey're talkingabout,sothey'renohelp,either.Thelatestnews thatslamsIDSAisthefactthatMRSAbiofilmsare coveredwithLYMErix. TeresaLuttrellI'dliketoseeIDSAstopworkingFORthe insuranceindustryandchangeyourguidelinestoreflect thetreatmentLymepatientsreallyneed.Manyhave andcontinuetosufferbecauseoftheIDSA.Shameful.

SueDarmsAmoreenlightenedattitudeaboutLyme, insteadofjustwritingusoffwhenwedon'tgetbetter afteracoupleofweeks. DebbieSeverinsonAustin,Texas.yes,wedohaveLyme inTexas! JenniferSchierholtSouthernCalifornia DianaGiffinNewguidelinesandopenendedrulesfor Doctor'swhoarewillingtotreatpatientsforChronic LymediseasewhichIcaughtinNorthernCalifornia. OpenendedtreatmentforLymediseaseshouldbeat leastconsideredgivenitssuccessinmanypatients. DeniseBojczukThankyouTraceyHamerWill!Yousaid itsowellIamgoingtopostagain. PleaseacknowledgethatChronicLymeDiseaseDOES exist.Please,pleasehelpusandstopfightingagainstus. Wearenottheenemy.Wearethevictimsofthe leadinginfectiousdiseaseinAmericatoday,yetthevery internationalsocietythatissupposedtobeonthe cuttingedgeofresearch,diagnosis,andtreatment guidelinesisleavingusbytheroadsidetodie. Ourinsurancecompanieswon'tpayforourtreatments becauseyousaywedon'tneedmorethanamonth's worth,despiteloadsofresearchdisputingthis,sowe die. Doctorsdon'twanttotreatusbecausetheyare shunned,investigated,harrassed,andcalledbeforethe medicalboardduetoyourguidelinesandtopdogs,so wedie. Wepayoutofpockettoseektreatmentbecause doctorswhotakeinsuranceenduponwatchlistsandin frontofmedicalboards,sowegobankruptandcan't feedourchildren,andloseeverything.Orwedie. Wedon'tgetdiagnosedquicklyenough,sothereislittle hopesometimesforustogetbetter,sowelivewithno qualityoflife,bedridden,disabled,unabletocarefor ourselvesorprovideforourselves,inconstantpainand innoendinsight,sowedieatourownhands. Youhavethepowerthisyeartobeginthechangethat wouldendtheendlessagonyforus.Morepeopleare afflictedbythisdiseasethananyotherdiseaseonyour agenda.Helpus.HELPUS.Makethisyearbetheyear youdosomethingto"discover"somethingnewthat ChronicLymeexistsifyoumusttosaveface.ButHELP

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KathyWhiteIfyoucan'tfindacureforLymedisease US.Stopusfromsuffering,takingourownlives,going please,please,pleasehelptostopthepersecutionof homeless,withoutfood,clothes,andlivinginagonizing doctorstreatingpeoplewhohaveLymedisease! painanddepressioneverydaybecauseNOONEWILL TREATUSorwecan'taffordthedoctorswhowill. JoshCutlerLikepreviouslystatedlistwhereyou Thisisanatrocityagainsthumankindoftheworst degreethathasbeenseenincenturies.Youmustreach contractedLymedisease. downdeepandrecognizewhatyouaredoingtopeople andSTOPIT.Ifanyofyouhaveashredofhuman IgotLymediseaseinashburn,vawherethelocalhealth decency,dowhatyouknowyouhavetodo...stopthe depthascalledloudoncountyanepidemicareafor propaganda,stopworkingsohardfiguringouthowto Lymedisease.Rep.FrankWolfisbattlingforus.Any keeptheshamgoing,andjustHELPUS. googlesearchofthearewillyieldarticleafterarticleon thebattleofChronicLyme. Itwon'tkeepgoingforever.Newer,youngerdoctors willcomeonwithethicsandconsciencesandthey NicoleLyonsJohnsonMoreeducationandresearchon won'ttowthepartylineanylonger.Ipersonallyspoke treatment.HavebeenfighntingchronicLymedisease tosomeofthematyourannualconferenceinBostonin forover2years.IknewnothingaboutLymedisease October.ThisWILLend.Youcanstartoffthenewyear priortothisgettingitin2009.Pleaseacknowledgethat strategizingthebestwaytoenditinyourfavor.Just itISthefastestgrowinginfectiousdisease.Thereisso endit.Wedon'tcarehow.Wejustneedtreatment.We mucheducationandawarenessaboutaboutWestNile wantthesufferingtostop,ourchildrentostopcrying, andIhaveneverknownanyonewhohadthis.Iknow ourfamiliestostopsuffering. manysufferinglongtermwithLymedisease. BethPattzFamilyof4from JessicaMadsonPlease CentralIllinoiswithBorrelia, acknowledgeLymeasa Mary Bush What IDSA fails to recognize Babesia&Bartonella. seriousdiseaseaffecting isitsgrowingobsolescence.Lackof hundredsofthousandsof WrblrFvtwlvThemembers peopleifnotmore.Change treatmentforpatientswithinfectious who"represented"IDSAin theguidelinessothereis diseases,wellwithinthescopeofIDSA, theBlumenthalpanelshould betterdiagnosisand nowallcalled"Lymedisease,"are bestrippedofthat treatment.Doctorsshouldn't actuallyseveraldiseasesthatare membershipandtheLyme beafraidtotreatpatientsas guidelinesoverhauled.The treatableatearlystages.Guidelinesfrom theyseefitandinsurance generaldropinantibiotic companiesneedtocoverthe IDSAhavemadethattreatment effectiveness,thesubjectof cost. impossible,andsoweseeagrowingbody halfyourFacebookposts,is occurringwhetherLyme GayleLinkMyfirstsymptoms ofscience,researchandclinical,moving patientsgetprolonged toanewstandardofcareamuch,much wereafterseveraltickbites treatmentornot,andyet, asachildinMissouri,then better one. Not available to most thesearethetoolswehave reinfectedafteratripto patients,however,somostareleftto fornow.Doctorsshouldnot Yosemite...addingbabesia bewitchhuntedforusing and bartonellatothemix. fendforselves,die,orcommitsuicide. themwhilebettertoolsare ShameonIDSA. developed.Thosecurrent ReneePearsallWakeup memberswho'vesaved IDSA.Mostofyouknowin insurancecompaniesmillionsdenyingtreatmentfor yourheartsthatChronicLymeexsistandisdestroying "postLyme"havecostthecountrymillionsmorein thelivesofthousandsofpeopleeveryday.Youarejust productivityandcausedalevelofsufferingyour tooafraidtotakeastandandbucktheantiquatedand "concerned"leadershipispersonallyunfamiliarwithor outdatedguidelinesthatyouhavecreatedbecauseof yourownignorance.Mydaughterwassickfor10yrs perhapsjusttooafraidtoacknowledge.It'sisno wonderthepublictrustinfederalhealthagenciesover beforewefinallyfoundanILADSdocinNYwho vaccinesoranythingelsehasplunged. properlydiagnosedheranddidn'ttellherthatshewas justsickbecauseshewantedattentionoritwasallin

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herhead.Ithasbeenalmost3yrsofdoctovisitspaid outofpocket,medicinespaidoutofpocketandother doctorswhohaveshunedusbecausewehavespoken upaboutLyme. StacyHughesRollandroleofbiofilmsinchronicdisease CarlStancilHowaboutPOSTINGaPUBLICRESPONSE righthereonthispagetoallofthesecomments?!! ShowusyouactuallyCAREaboutgettingouropinions sinceyouASKEDFORIT! KathyObalCarlstromAphysicianwithLymedisease ("Lymecomplex"isprobablyabetterterm)shareshis testimonyaboutwhathappenedtohimafterbeing givenashorttermcourseofantibioticsandthendenied furtherantibiotics.Inmanycases,Lymecomplexsimply cannotbetreatedin46weeks.Eachpersonrequiresa uniquetreatmenttime,frommanymonthstooften manyyears.Adefinitivetimeframecannotbeputon anyindividual'streatmentcourse. Therearesimplytoomanyfactorsthateffecteach person'srecoverytimesuchas;acuteopportunistic infections,systemicyeast/molds,surgeryinterrupting treatmentprogress,antibioticresistantstrains, treatmentfailuresrequiringthepatienttotrymultiple treatmentsuntiltheyfindonethatworks,germsthat adaptandrequiretheswitchingofmedicine, multiplicityofinfectionsthatneedtobeaddressed,etc. Suchneedstobeconsideredandbecometheaccepted andhumane"standardofcare"amongthemedical community.Thankyouforlisteningtomythoughts today.http://www.youtube.com/watch?v=EwW0 ky7DdY&feature=plcp&context=C3555110UDOEgsToPD skIbSL_rIun5PAK2feOCtb HeatherSammutIfyourefusetorecognizethatweall havechronicLymethenyoushouldbedoingresearch onwhatitisweareallsufferingfrombecauseitisan EPIDEMIC! NancieBrengleWow!!751commentsMylittle familyof5has2memberswithLyme!!40%ofmineis sufferingwiththis.Myselfandmy4yearold.What wouldhappenifapatienttestedpositiveforcancerand thedoctorsaid,wellIthinkthatisafalsepositivesowe arenotgoingtotreat?Thepatientwouldthengoonto getworseandworse.ImaginehearingNope,wearenot goingtotreatyou!!ItestedpositiveCDCpositivefor LymeandthatsexactlywhatIheard.Igrewuphearing thatAmericawasthebestplaceonearth.Aplace

wheredreamscometrue,aplacewhereyoucouldbe whateveryouwantedtobe..YouknowwhatIwantto be??HEALTHY!!!Iwantmychildtobehealthy.Knowing youaresufferingandrealizingthereisnothinganyone willdotohelpisthemosthopelessfeelingyoucan had..Andyouknowwhat..Youguyshavethepowerto changethis..TheISDAhasthepowertomakea differenceintheworld,tomakeadifferenceinthelives ofsomanysufferingpeople..TobetheHero's..Iamnot surehowallofyougrewup,butIgrewupbeingtaught thatmakingadifferenceandhelpingthosewhocould nothelpthemselvesisthekindofpersonwewereall supposedtobe!!Willyoubethosepeople??MAKEA DIFFERENCEISDA...SAVEALIFESTARTINGTODAY!!! KaraRosepleasebegintomakechangesinhowLyme diseaseistreatedanddiagnoses CaityBoydIam17yearsold,andhavebeensickfor overayearwithLyme.Ihavelosteverything.mylife. myfriends.myfreedom.andmostimportantlymy health.Myparentshavespentthousandsofdollars goingfromdoctortodoctor,wehavetotraveloutof statetoevenseeadoctorwhowilltreatforLyme.Lyme isworsethencancerbecauseitisalwayschanging,and foryounottoevenrecognizeitasadisease,that'sjust crazy.Peopleareaskingforhelp.beggingforhelp. PLEASEhelpthem.Lymeisreal.anditisdestroyingthe livesofmanypeople. KatrinaMuysenbergIwouldloveitiftheIDSAand othersinthemedicalcommunitystoppeddenyingthe existenceofChronicLymedisease.Itisreal.Anditisa seriousproblemforthosewhosufferfromit. Acknowledgethefactthatitisreal.Please. MaryBushWhatIDSAfailstorecognizeisitsgrowing obsolescence.Lackoftreatmentforpatientswith infectiousdiseases,wellwithinthescopeofIDSA,now allcalled"Lymedisease,"areactuallyseveraldiseases thataretreatableatearlystages.GuidelinesfromIDSA havemadethattreatmentimpossible,andsoweseea growingbodyofscience,researchandclinical,moving toanewstandardofcareamuch,muchbetterone. Notavailabletomostpatients,however,somostare lefttofendforselves,die,orcommitsuicide.Shameon IDSA. MaryBushIDSA'sabrogationofresponsibilityinso manydirectionspointstoafailedsystem.Atickbitecan andwillsoonaffectenoughintheIDSAfamilyitself, thattheanswerswillcome.Toolateforus,buttheywill

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come.Sowhatdowewantthisyear?I'dliketoseeIDSA shutdown,orinvestigated. AnnaRosePleasemodifyyourLymeandcoinfection protocols.Latestage/chronicLymeDOESexist.Whydo youcontinuetodenythis.Ifyouoroneofyourfamily memberssufferedfromit,Ithinkyouwouldfeel differently. SarahSteinmannPleaserecognizethatfactthatLyme diseaseisreal.Thankyou! DealYeti 1)Addthespecificandsignificantbands removedfortherecalledhumanLymeDiseasevaccine backintotheWesternBlottest:22,23,25,31,and34, whichincludeOSPA,OSPBandOSPCantigensthe threemostwidelyacceptedandrecognizedBb antigens. 2)DiscontinuerelianceonthenotoriouslyfaultyELISA testforLyme,whichhasproveninblindstudiestobe lessaccuratethanflippingacoin! 3)ResearchadditionalvectorsforLymeDisease includingotherbloodsuckinginsects(sincethecatflea, forinstance,hasbeenidentifiedasacarrierforthe Borreliaburgdorferi)anditspossiblestatusasanSTD (sinceLymeisarelativeofsyphilisandthereisahigher incidenceofLymeinmarriedcouples). 4)Acknowledgethattheabsenceofabullseyerashis NOTtheabsenceofLyme. 5)Acknowledgethatpeoplecanbeinfectedbytick nymphs,whicharethesizeofapoppyseedandhavea painlessbite,sonotrememberingatickbitedoesNOT =notgettingLyme. 6)AcknowledgethatLymeiswidespreadthroughout thecountry,sosimplybeingfromacertainstate doesntmeanyoudonthaveLyme. Andoverall:Releaseyourdeathgriponyourantiquated LymeDiseaseguidelinesinthefaceofagrowingbody ofevidence(fromdoctorsandpatientsalike)showing howinaccuratetheyare.ThecurrentIDSAguidelines amounttosystemicmalpracticeandtheIDSAsfanatical adherencetothemisbothshamefulandunethical. AliciaMeadowsHaneyTreatmentandeducationfor Lymedisease!Myhusbandwasbitbyatickandtested positiveforLyme.Wedidthe3weekantibioticandwas toldeverythingwasfine.Afterayearofchronicpainwe

foundouthehad2othercoinfectionsthatnevergot treated,andhestillhadLyme.Nowthisdiseasehashad ayeartoimbedinhisbody.Hecan'tfunctionorwork withoutridiculousamountofantibioticsthathetakes daily.Thiscouldhavebeenavoided.Thisisanepidemic andneedstobetakenseriously. AngelWilliamsSpellIjustfeeloverwhelmedbecause hereiamfightingthisdailyandwatchingmysevenyr oldsufferfromitandpossiblyhavinginfectedmywhole familyandnotonlyisthataDAILYbattle,butknowing thatmyrightshavebeeninfringeduponandhavingto fightjusttohavetreatmentistoomuchtobear.....ifeel likeihavebeenwoundedonthebattlefieldandmy superiorsinsteadofdraggingmeoffthefield,theyhave leftmetheretodefendformyself,anddonteven believediminjured.....itrulyfeelbetrayedbythevery oneswhotookanoathtoprotectus...why?.....whyhave uleftusheretosufferandbattlealone?....weare fightingAKILLERandyouwouldrathertellusthatkiller doesntexisteventhoughyouhaveseenusdiebutyou wouldratherclaimits15otherdiseases....andwer beggingforhelp....someofusarefinanciallybroke becauseofthis.....WEHAVENTASKEDANYOFYOUTO LAYAGOLDENEGG....sothereforejustcaringaboutus issomethingUCANDO. HeatherSammutCentralCalifornia SusanAndersonIwantyoutoacknowledgethe existence&needforidentificationandtreatmentof CHRONICLYMEDISEASE!IknowIhaveit,andmany, manyotherswhoneedtreatmentbutcannotgetit. C'mon,wakeup! LauraAbramsonMeandthehundredsofthousandsof otherchronicLymesufferersNEEDbettertreatment plans,medications,insurancecoveragealongwithmore educationgiventothepublic.EVERYONEneedstoknow howveryREALandSERIOUSthishorriblediseaseisand allofthephysicalandmentalreactionsweallsuffer through.PleasestophidingtherealityofLYMEDisease. ItiseverywhereandDoctorsandthepublicneedto KNOWIT. LizzyCocksCoverageformyfamily'sLymemedicines please! MaryBushRedefine"Lyme"andcallitwhatitisoris not:Borrelia,Bartonella,Babesia,andmore.Stop lettingpatientswonderwhatiswrongwiththem, acknowledgenewtesting,dostatetostatetrials,

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Americabeprimarilyinterestedinsupportingpeople removethe"wedon'thaveitinthisstate"idiocy(i.e. whohaveinfectiousdiseasesofepidemicproportionsin expandgeographicranges),includephysicianswho AmericanotablyChronicLymeDisease.Thereisawide reallyaresuccessful(thoughIdoubtthey'llworkwith IDSAatthispoint),getridofcurrentleadership,and bodyofmedicalliteratureshowingthattheborellia talktopatients.That'sjustforstarters.Patientshavea spirochetecanhidefromantibioticsandtheimmune LOTofmisinformationandstickbythat,becausethey systemsimultaneously.Thus,therecommended havenowhereelsetogo. guidelinesareinsufficientintreatingmanypatients. Pleaseconsiderthatallus'ChronicLymies'aren'tjust StephanieVandagriffWewillnotbeignored! lying. Everybodykeepcontactingnewsstationstogetthis storyheard! IsaiahGoodwinSomanywholefamiliesstrucktogether withLymeregardlessofwheretheylive.Seemsabit oddtomeifyousayitcantbetransmittedotherways SuzyGreenbergI'mtiredoffightingthisdiseaseand thanticks.Althoughstudiesproveitsfoundinsperm, needyouonmyside.Wehaveanepidemicgoingon vaginalsecretions,placenta,breastmilkandevensaliva. hereandfeellikewe'retalkingtodeafears.Weneed ourdoctorstobeeducatedonLymeandco'ssothat Withouranimalshorses,cows,chickensbeingtested thenextgenerationofpeoplegettingbitwon'thaveit witha90%positiveoutcomeofLyme.Whatdoesthis turnintochronicLymelikeIhave.Weseemtobedoing meaninourfoodsupply?Rawmeat=Lyme,egg moreoftheresearchthanyouareanditdoesn'tmake yolk=Lyme,lickfromyourhorseLyme,huntersgetting sensethatyouaren'tdoingthesameifnotmore.Ibeg Lyme,bloodtransfusionsneedbetterguidelinesifa ofyou...pleasehelpus! personhaseverhadLymediseasetheyshouldnever evergivebloodtoanotherhumanbeing.30daysof ELouiseLaMannaTreatchronicLymediseaselikethe antibioticsistheguidelinesmytestingjustgotgoing epidemicitis.AndfindbettertestingforLyme. after6monthsoftreatmentthetestingshowsmore positivebands.Spiderbites, JulieSearcyAnderson fleas andmorecanspreadthis JanetO'LaceyIntegrity SoutheastTexas andnotalkatallabouttheco infectionsthatarealmost _________________________________ AngelWilliamsSpellNorth worseastheLymedisease Carolina itself. BeverlyMacDonaldBakerIwouldlike researchtofindfaster,accuratetesting.I HannahHollingsworthI DanielAndrsPatiosome would like the IDSA to acknowledge that gutsandheartfromits wouldlikeashiftinIDSA's chronicLymeexists.Informourdoctors loyalty.I'dliketoseemore directives. ofanemphasisonpatient aboutLymesotheywilltestwithout wellbeingandpublic BreeBreeZerkerHarrison beingaskedto,whensymptomsare healththanonwriting AdmitthereischronicLyme, present. guidelinesinlegalese admitthereisLymeinTx.allow languagethatemphasizes peopletobetreatedaslongas waysforinsurance neccessary, don'trunoutthe Moreresearchtofindoutwhatwillcure companiestodenycareto doctorsthatdotreatlongterm, Lyme/ChronicLymeandallowthoseDrs patients.Iwastestedusing requiredoctorstotestforLyme totreatchronicLyme. theIgenixlabcompanyand especiallyifchronicpainhas foundtobepositivefor existedforyearswithout ThoseofuswithLyme/ChronicLymeare bothacuteandchronic gettingbetterinformed,betterorganized explanationorbeganwithillnes exp.meningitis... borelliaburgdorferi,a and WE ARE NOT GOING AWAY. I'vebeensicksince2001,Iwas findingthatwouldhave torturedfor5yrsbyapaindr shownasanegativeusing thatIbeggedfortestingfor thewidespread,yettotally Lyme,Lupus&RA,Ihadeveryexpensiveinterventional insufficienttestingthatmostMD'suse. treatmenttheycouldcomeupwithupto/including Morphinepainpumpthatfailed3xduetomuscle IwouldliketoseetheInfectiousDiseasesSocietyof

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spasmstearingthecatheteroutofmyspine. Whenafter2yrsofcatheterfailuresIaskedforthe pumptoberemoved(8yrssick,5withthispaindrwho requiredmetoseehismentaltherapist)Iwastold"it's allinyourhead"thensamedrhadmeonrequired zoloft&elavilputmeonSavellasamplepack&didn't takemeoffoftheotherssrimeds,Iendedupwith seratoninsicknessuntilIlookedupsavella&learned thathedidwrongyetagain.Iquitthatdrimmeadiately &foundagooddrthatactuallypointedoutthatmymri resultsshowedIshouldhavebeensenttoinfectious diseasesdrbctherewassomethinginmybonemarrow thatwasshowingillness,thatinfowaskeptfromme& thepainpump,Iwastold,wasmyonlychancefor relief. Itrustedthisdoctorcompletely&mycarewasnotdone inthebestinterestofmyhealthorrecovery,insteadI wasusedtogeteverypennythatIhad&thenwhen theydidwrongtheytriedtomakemesickwith combiningmedsthatshouldn'tbecombined.whyisthis allowed????ifthishappenedtomehowmanyhasthis happenedtoorworse???? MissySmithGriffinJeffersonSouthCarolina.Please don'tignoreusanylonger.Weneedyourhelp.Would youignoresomeonewithCancer?LymeDiseaseisreal. Ifyoucouldwalkinourshoejustoneday.Youwould feelourpain. PeterKempWhethertheIDSAlikeitornot,many peopleinothercountrieslookwithhopetotheUSAfor scientificandmedicalprogressindiagnosingand treatingLymedisease.Theirhopemayprovewell foundedthankstosomebrilliantresearchersand dedicatedphysiciansbutthisisnothankstotheIDSA. WhenIwatchedthewebcastofthereviewoftheIDSA GuidelinesforLymeDisease,Iwasstruckbythe convincingevidenceandsoundreasoningofthe physiciansandscientiststhatbelieveLymediseasecan bechronic.ButitsasthoughtheIDSAwerenot listeningbecausetheguidelinesremainedessentially thesame.Itseemstheysimplyignoredthisevidence andthishascontinuedtoleavedesperatelyillpeople strugglingtogettreatment. Howmanypeoplehavebeenunabletofindaphysician willingtotreattheirchronicLymediseasebecauseof theIDSAguidelines?Howmanyhavetotravelgreat distancestoseeadoctor,iftheycanmanageandifthey

canaffordit?Howmanyarewaitingyearsfora diagnosis,perhapswitheverymonththatpasses increasingtheriskthattheirinfectionwillbecome intractable?CantheIDSAanswerthesequestions? IcanunderstandthattheIDSAdonotlikebeing attacked,butfromachronicLymeperspective;we watchedfinescientistsandphysiciansaddressingthe IDSAanditseemstheirevidencewassimplyignored. Arewegoingtobelistenedtoifwecalmlyaskfor betterguidelines?Itrequiredlegalactiontogetthe IDSAtodothelastreview,willyoudoanotherreviewif weasknicely? PrettyPlease. JoshCutlerWhatmustwedoIDSA?Wearesick,tired andfeelinglikewecanhardlykeeppushing. Doyouwantusonourkneesbeggingforthetruthand achangeinfrontofyourHQinAlexandria,Va? Wearepeoplewithfamiliesjustlikeyou.Weonlyhave thisonelifeandwewantafairchanceatbeinghappy justlikeyouguys. JenniferSchierholtIndividualswithchronicLymeand coinfectionsaren'ttheonlyoneswhoaresuffering. Spouses,children,wholefamilies,employers,andentire communitiessufferwhenmedicalprofessionalsinsist onignoringevidenceofemerginginfectiousdiseases. Didyoulearnnothingfromthe1980's?Pleasedon'tlet thebandplayonwiththisone,too.Pleasedotheright thing.Youknowyoucan.Pleasehelp. YvonneForeyPleasedontforgetusintheUK...if anythingdoeschangewewillhavetowaityearsforitto passoverheretoo..justlikeAIDS..manypeopleiknow arereadingthisandprobablythinkitsonlyUSAand overseas....asstatedbefore,wehaveNOdoctorswho willtreat,NOinsuranceandNOONEtotakeus seriouslyunlesswefly(toosickandnofunds)toother countrieslikeyours..MysondrovemetoGermanyI camehomeasbad..littledidweknowthenheandmost ofthefamily,grandchildrenetchadittoo....Whenyou decidetodeletethisthreadwithoutgivingusany answers...sleepwellbutdontforgettowashtheblood offyourhandsofhundredsofthousandsofsufferers WORLDWIDE!whojustwanttherightswedeserve..at theveryleastforyoutoadmityourwrong...oneday youwillcometousforhelpwhenyourdying...Iknow manyofuswouldhelpyou...helpus

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KathleenDicksonYouallshouldbeaskingIDSAwhat OspAis.Iftheyanswerithonestly,theyselfindictfor FRAUDandHOMICIDE,LOL. KathleenDicksonTheycan'tanswerthequestion, "Whatwerethosevaccines,ImmuLymeandLYMErix?" withoutturningthemselvesintotheFBIforscientific fraudandracketeering.Andhomicide. JoshCutlerKathleenweareallsuretheirhandsare dirty.Idon'tcareiftheyadmittheywerewrong.Ifwe accusethemandtrytohangthemforpastcrimesitwill backtheminacorner. Iforgivewhateveritistheydid.Ijustwantnew guidelinesanresearchtowardsacure. JanetO'LaceyIntegrity BeverlyMacDonaldBakerIwouldlikeresearchtofind faster,accuratetesting.IwouldliketheIDSAto acknowledgethatchronicLymeexists.Informour doctorsaboutLymesotheywilltestwithoutbeing askedto,whensymptomsarepresent. MoreresearchtofindoutwhatwillcureLyme/Chronic LymeandallowthoseDrstotreatchronicLyme. ThoseofuswithLyme/ChronicLymearegettingbetter informed,betterorganizedandWEARENOTGOING AWAY. DonnaLeeWilliamsPleasereviseyourguidelines accordingtothenewestresearch(itdoesn'thavetobe IDSAresearch).AdmitthatLymediseasecanbechronic. SomanypeopleintherealworldaresufferingLyme's horriblesymptomsandunremittingpain.Wearenotall hypochondriacs.Weunerstandthattherearerisksto takingantibioticslongtermbutthedecisionshouldbe ours.FindnewerbettertestsforLymedisease.Think outoftheboxwhenitcomestoresearch.Ideveloped neurologicalLymein2001.Ineversawatickorarash. Itwasn'tuntilIbeganacombinationofdrugsthatI begantogetbetteratall.Afterfouryearsofbeing bedriddenandhousebound,Ibegantogetwell.Today Iamabout95%better.IthankGodthatmyIDSAdoctor allowedmetostayonantibioticsuntilIgotwell KimberlyAldrupOttoIlostmyjob,home,EVERYTHING toLyme.My3yearoldisinfectedstillnotreatmentfor himandsuffering....And,forwhat?Becausethetruth hasbeendeniedtoallofus.Howcanadiseasebe aroundfor40years,andthansomeifthetruthwas

reallytold,andwearestillbeingdenied????Answers wouldbeniceashumanbeings. LydiaMayClarkfromWarwick,RhodeIsland,oneof thefewstatestohavealawmandatingcertain insurancecompaniestocoveralltreatmentforchronic Lyme.I'minanendemicareaanditstilltookmeatleast ayeartobediagnosed(notsurewhenIwasinfected, butIcouldhazardaguess).Thisdiseasealmostruined mylife;thankgoodnessIfoundadoctorwhodidn't attributemysevere,widespreadencephalopathyas observedonmySPECTscantothedelusionsofasilly teenagerwithdeepseededpsychologicalissues. WhatwouldIliketoseechangeinsociety?Howabout doctorsthatdon'twriteoffpatientsasinsanerather thanadmitthey'retoolazytolookforacorrect diagnosis?Howaboutdoctorswhoactuallylookfor horses(Lymedisease)beforezebras(MS,ALS, "complicatedmigraines","idiopathicmovement disorder",conversiondisorder,etc.)?Howaboutwe scraptheIDSAguidelinesandstartfresh?Howaboutan IDSApanelmadeupofhonestdoctors,notgreedypigs inbigpharmaandtheinsurancecompanies'pockets,or biowarfareexperts(we'reontoyou,Wormser)?How aboutapanelwithrealexpertswithexperiencefighting LymeinthetrencheslikeJemsekandBurrascano,not selfimportant,selfservingacademics?Howabout researchintomoreaccuratebloodtests?Howabout moredoctorsorderingSPECTscanstoruleout encephalopathybeforedismissingapatientasnuts? HowaboutyoustopminimizingchronicLymeasthe "achesandpainsofdailyliving"andignoringthoseofus whohavelosttheabilitytowalk,talk,andhavecontrol overourmusclemovementsandbodilyfunctionsdue tothisterribledisease? Howaboutmoredoctorswhocareabouttheirpatients, nottheestablishment?Howaboutdoctorswhoarefree totreattheirpatientswithlongtermantibiotics(like theydowithrelateddiseasessuchassyphilisand relapsingfever)withoutfearoflosingtheirjobs?How aboutinsurancecompaniescoveringourveryexpensive treatmentwithoutthestategovernmentmandating themto?Evenwithinsurancecoveringit,myLyme treatmenthascostmorethanmylatemother'scancer treatment.Ifwehadtopayforthatoutofpocket,my familywouldhavelostourhouseandmysiblingsandI wouldhavekissedouraspirationstogotocollege goodbye.Thatisnotokay.

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TaylorDerrickRecognitionofLymeDiseaseandforthe Icouldgoon,butothershavesaidwhatneedstobe societytostopmakingitsohardondoctorswhochoose said.Sorryforanygrammaticalorspellingerrorsinthe totreatit.(CentralFlorida) post.MyLymeisaffectingmyleftposteriortemporal lobethemost,andIstillhaven'tgottenbacktomyold PumaOfThenorthFaceittheAttorneyGeneralof selfyet. Conn.hadtheIDSA'snumbercorrectalongtimeago. Greetings Theyarebasicallymoreinterestedingreedthanhelping thepeoplewhosetaxdollarspaytheirsalaries. HootanVeehTheproblemthewayIseeitisthatthe vastmajorityofLymepatientsdon'tevenbothertosee LauraHoffertIwouldliketosee,intheveryleast,an IDSAinfectiousdiseasedoctors.Thatisjustsad. acknowledgementofLymedisease'sexistence.The majorityofrepliestotheIDSA'spostareaboutLyme, KatieMcGrathThisyearIwanttoseetheguidelines therearepeoplesufferingduetoorganization's changedforLymediseasesoitcanbediagnosedand ignorancetoamajormedicalproblem.It'svitalto treated. people'shealthandvitaltotheorganizationtomaintain ashredofcredibility. JennaLeighoneofmybestfriendshasLyme.please pleaseknowledgeit.Shehastogooutofstatetogosee adoctor.Whichjuststressesheroutevenmoremaking JasonHulkoIwouldliketoseetheIDSAnotblanketly thelLymeevenworse.Shesinconstantpain.Idont throwoutresearchpresentedbeforetherespective knowhowpeoplecansayshesmakingitup,whenyou panels.Ifmedicinehadalwaysturnedablindeyetothe canclearlyseethepaininhereyes.Ijustwantmybest possibilitieslaidoutbeforeitthroughlegitimateprivate researchthenrabieswouldstillbekillingalotof friendtogetbetter.pleaseregonizeitandhelp.itis people.TheIDSAneedstoacceptandreviewall real. research.Notjustresearchdonethroughselected sources. MichelleKoppTraceyHamerWill:everythingIwanted tosayandmore.Kudos. JeffRaineyIwouldliketosee GarySimmonsIt'sonething JeffRaineyIwouldliketoseemovement movementtowardsacure andlessprosecutionofthose tobesickwiththisvector towardsacureandlessprosecutionof thattrytocure!Thisdisease bornespirochetelillnessand thosethattrytocure!Thisdiseaseis isdestroyingfamiliesbythe fightforyourlifebuttohave score.Itisbankrupting yournarrowmindedself destroyingfamiliesbythescore.Itis thousands. centeredviewmakesmy bankruptingthousands. bloodboil.Mywife,my2 JanOrfStillsittingherein sonsandIhavebeenbattling Missouri4yearslaterwiththeswellingandpaininmy thisillnesssince1989andyourviewpointsledour handsandkneesthattheIDSAspecialistcalled physicianstobuildasuperbuginus.WishIcouldreally tellyouwhatIthinkofyourorganization. "depression"evenafterheadmittedIhadapositive Lymetest.Thisisnotanexageration.Myhusbandwas anincredulouswitnesstothisconversation.IfIhad BillBarberIDSAscredibilityisunderfireandrightfully receivedthepropertreatmentinthebeginning, soastheycontinuallyignoretheoverwhelming perhapsIwouldnotstillbesuffering.ThankfullyI evidenceofchronicLymediseaseandthefactthatLime eventuallyfoundanILADSdoctorwhocontinuestohelp diseaseisanepidemicthatisspreadingacrossour meimprove.Please,IDSA,ifyoucannotopenyoureyes nation.ThearchaicandflawedLymediseasetreatment guidelinesthatpreventknowledgeabledoctorsfrom toseekthetruthandpreventmoresuffering,thenjust treatingthisdiseaseareharmfulandmustberevised. besilentandletILADSandit'sdoctorsdotheirwork. ThefrontlinefightersofLymediseasearegetting hammeredfromthepeoplethatshouldbeencouraging CharleneLibbyI'dliketoseeafocusontesting, andhelpingthem.Howmanymorefamiliesmustsuffer diagnosisandtreatmentofLymedisease.Themedical becauseofIDSAsfailuretoactresponsibly?Howmany communityseemstoneedmorevalidationofthe seriousnessofthiscondition.Manypeopleare moremustdiebeforeIDSAfinallygetsit. suffering.

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 KathleenGollDerstineThankyouforaskingthis questionandlisteningtoourinput.Pleasereviewand reviseyourguidelinesforLymediseaseandtickborne illness.Wepatientsneedresearchintomoreaccurate testingandeffectivetreatments,notmorebickering.In 2004Isawtheheadofinfectiousdiseaseatawell knownN.CAclinic,who,whenIaskedaboutthe possibilityofLyme,hadattheready,copiesofNYT articlestotheeffectthatchronicLymecouldnotexist andtestingforitisascam,thepositionifISDA.Was alsotoldthatLymeinfectiondidnotexistinCA. Thisisallveryirrational,asthereisplentyofpeer reviewedresearchtothecontrary.Please,takeinto accountpatient'sviewpointsandthemanyareasof researchthatcallyourcurrentguidelinesintoquestion. Icouldhavegottenhelpmuchsooner...thisdochad nothingtooffermebutsymptomaticrelief.Thiswould beunconscionableforanyotherseriousillness,"Lyme" andtickborneillnessprevalenceisonlygoingto continuetogrowwilltheIDSAbandplayon? DaniSpirerAnacknowledgementbytheIDSAthat chronicLymediseasedoesexistandthatLymedisease formanymanypeopleisNOThardtogetandeasyto cureitisaninsidious,growingepidemicandshouldbe treatedassuch. AnneGravesMybestfriendandlittlesisterhasbeen fightingLymediseaseforthepastyear.I'dlikeforher struggletoberecognized,andforherfighttobeeasier. Don'tmakeherleavethestatetofindtreatment,let herstayclosetoherfriendsandfamilywholoveher andsupporther.Pleaseacknowledgehersicknessand helpherrecover.Ignoringitwon'tmakeitgoaway. JessinaBereznakInsomeways,IfeelgratefulthatI nowknowwhatiswrongwithme.IKNOWIhaveLyme. I'vebeeninthefightofmylifeforthelast2yearsand amalmost100%(withnohelpfrommainstream medicineorinsurance).Ihadbeensickwithvarious problemsfor16years.Twoyearsago,Iwaslookingat "MS".Howmanypeopleouttherearemisdiagnosed withthese"idiopathic"diseasesandreallyhaveLyme? Howmanydeclineevenfurtherintodisabilityfromthe immunesuppressivedrugstheyaregiven?I'dbetworld wide,itismillions.Yourguidelinesarecausingthe sufferingofnotonlytheknownLymecommunity,but allofthosewhoaremisdiagnosedwithsomany diseasesthatLyme"mimics"whowerenotfortunate enoughtohavepropertesting.

DeniseWeaverpleasedonotletusdie....LYMEis spreading. HeidiTeffEhaltAcknowlegeexistenceofChronicLyme disease!Withsomuchcontroversyandevidence,how couldandwhywouldanyoneproclaimdefinitivelythat itdidn'texist? JulianaKingYouaskedweareanswering.Please acknowledgethatthisdiseaseistakingawayourlives andkillingthepeoplewelove.Ihavebeenbedbound for18monthsandhavewatchedcountlessfriends sufferingwithverylittleornohelp.Pleaseopenyour eyes,pleasereachout.Pleasecare.Whatifthiswas yourdaughter,yourmother,yourwife,yourfriend.We needtreatment,weneedacure,weneeddoctors,we needmedications,weneedawareness.Weneedyou. Pleasedon'tgiveuponus. DonKnieriemIsufferfromchronicLymediseaseand gotmuchsickerbecauseoftheIDSALymedisease treatmentguidelines.Ihadtofindasecretdoctor willingtotreatmeoutsideyourguidelines.Soonafter startinghistreatmentIbeganimprovingandam99% healthynow.IwantyoutoTALKTOTHEDOCTORSWHO KNOWHOWTOTREATLYMEDISEASEANDCORRECT YOURGUIDELINES! KristiLinnPleasetakeLymetreatmentseriously!This diseasetakesaperson'slifeawayfromthem! GailShefferWhenisWorldLymeDay?Whatareyou doingtospreadtheawarenessofLymeandothertick bornediseases??? CrissyLaBruzzaIdon'treallyseehowthisisgoingto work.Thesearethesamepeoplethattriedtostop UnderOurSkinfromevenbeingshownonPBS.ButIdo, inmyheart,hopesomeonelistens.What'sitgoingto take,everymemberoftheirfamilyandchildrentoget Lymedisease,likesomanyofus?Itamazesmethat thesebacteriahavebeenevolvingtoevadeourimmune systemsforthousandsofyears,yetsomethinkthatjust becauseamediocre,runofthemilltestsomeonespent afewyearscreatingcan'tpickitup,itmustn'tbethere. Howarrogant. DerekSpringsteentherecognitionofchronicLyme diseaseasaseriousconditionthatmustbefurther studiedbythemedicalcommunityinordertodiscover anddeveloppropertreatment.

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RichardShelleyWehavethetechnologyinthisgreat countryofourstocomeupwithacureforLyme disease.Whywon'tanyonetakethereinsandrunwith it?Allthegeniousscientistsneedtoputtheirheads togetherandputanendtothisongoingconstant diseasewhichisabattlethatneverends.After5.5 years,3differentIVcoursesandamultitudeof antibiotics,mybodyisslowlybutsurelybeing destroyedbythisdisease....comeonIDSA,STEPUPTO THEPLATEwithsomenewsciencealready....ThisLyme isoutofcontrol,IhearinGERMANYtheyarecuringthis diseasewithcontrolledbodytemperaturerisings,why can'tweinvestigatethishereintheU.S??.......Thanks SarahElliottIfthereare800+peoplewhoare commentingontheirexperienceswithChronicLyme andtheCDCestimatesthattheactualnumberof peoplewithLymeis10timesmorethanreported, you'relookingatatleast8,000peoplewiththisdisease. Thatisnottakingintoaccountthosewhoaren'tupto speaking,aren'tonfacebook,etc. Inadditiontowhateveryonehasalreadysaid (admittedly,Ihavenotreadthroughallcomments),I personallywouldliketoseeastrongreevaluationof IDSA'spositiononLyme. HowlongdidittaketodeterminehowseriousHIV/AIDS is?Wouldn'ttheIDSAprefertobeproactiveratherthan reactiveandnotrepeathistory?Itseemstomeit'dbe morebeneficialtoallinvolvediftheIDSAwereableto takemoreofa"Pioneering"approachby 1)admittingthey'vebeenwrong,2)interviewing patients,doctors,familymembersandfriendsonwhat ourlivesarelike,3)understandingthatthemajorityof usaremakinginformeddecisionswhenitcomesto treatment(forustheriskofusinglongtermabxis worththepotentialtogainourlivesback),4)pavingthe waytomoreresearch,5)apologizingtonotjustthe patientsbutalsothephysicianswho'velosttheirown livelihoodsbecausetheychosetoanswerourpleasto helpusgetwell. MostpeoplewhodonothaveLymewouldn'tlastan hourinourbodieswithoutrunningtothenearest emergencyroomforhelp.Andtheemergencyroom doctorswouldtreatthemasifthey'rehypochondriac drugaddicts. Weunderstandyouwanttoprotectthepeople.But obviously(basedonallofthesecomments)theway

you'regoingaboutitisineffectiveandcounter productive. I'vehadLymeallmylife.Wasonlydiagnosedayearand ahalfago.SymptomaticsinceIwas7yearsold(ifnot earlier,that'sjustmyearliestmemoryofsymptoms). I'vebeendisabledformorethan2yearsnowoften timesnothavingtheabilitytodressmyself,brushmy teethortakecareofotherbasictasks.Ifbetter education&guidelineswereinplacethenperhapsyour sonordaughterwillnotexperiencewhatIandsomany othershaveexperienced. DeniseWeaverHelpustounderstandwhyyouchoseto claimthatthereisnosuchthingasChronicLyme Disease....mygoodness....howcanyoudothistoyour fellowhumanbeings...gosh....Isuredonothopethis happenstoanyofyouoryourchildren...DeniseWeaver inHERSHEY,Pa. ToniHothanRecognizebothLymeandLeptospirosisfor theepidemicstheyaregetdoctorseducatedinthe diseasesandhowtotreatthem,ratherthanhaving themcontinuetoinsistontryingtotreatuswith expensivedrugsforillnessesweDONOThave,simply becausetheyknownothingaboutwhatweDOHAVE.. DonnaSmithO'HearnYoumustinevitablyadmitthat Lymeandothertickbornediseasesareaseriousthreat topublichealth.Whynotjustdoitandgetonwith helpingtohealtheafflictedandpreventingthese diseases? LaraScharpInthecomingyearIwouldliketobeableto recommendpeopleseeaninfectiousdiseasedoctorfor Lymeandcoinfectionsinsteadoftellingthemtosteer veryclearofthembecausetheydon'tknowhowto treat,usepoorguidelinesandtellpeopletheyhave somethingelseoritisintheirheadsoritisjustaging. Unfortunately,IthinkitwilltakemanyyearsforIDSAto facerealityandstarttreatingproperly. MaryBushLara,wellsaid! BeverlyReimersIt'ssohardtobelieveDoctorsdon't recognizeChronicLymediseaseforthehorrible,life consumingproblemthatitis.Myprecious17yr.old granddaughterwasdiagnosedwithChronicLymeovera yearago.Theycouldn'tfinddoctorsinTexasor Oklahomathatwouldtreather.Sheisinconstantpain, haslostalotofweightandhashadtodropoutof school.Sometimessheissobadshepassesoutwhen

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JoniBoydDoyouknowhowcrazyitisforalicensedand shetriestowalkfromherbedtothebathroom.Icould practicingmedicaldoctortolookyouintheeyeandsay goonandonaboutthehorriblesymptomsshehas.She "thereisnoLymeinTexas?(substituteanystate haslostherpreciousteenageyearswhensheshouldbe here!!)?Sincewhendovectorborneillnessesknow buildingmemories.Herparenthavetriedeverything geographicalboundaries!!!Dodeerknownottoleave they'veheardoftryingtohelpher.Ithascost Conneticut??Doticksknownottocrawloutof thousandsandthousandsofdollars.Theyhavetaken Vermont?Dodogs,people,mosquitoes,etc.nottravel hertodoctorsinMissouriandarenowinKansastrying outofstateboundaries??Imean,ANYintelligent anothertreatment.Thistreatmentisn'tevencovered personknowsthatdiseasesspreadoutsideof bytheirinsurance.Theyhavetakensecondjobsand geographicalareas...Howcanwerespectsomeone mortgagedtheirhometotrytogethelpfortheir whobelievesandacceptssuchincredulous daughter.Whatisitgoingtotaketogetyoupeopleto falsehoods??!!!Ridiculous!!!Pleasehearourvoices!!!!!! wakeupandrecognizethisdiseaseforthemonsterthat itis? AllisonMcGillButenschonInformationandlegitimate Lymediseasesupport/help! RichardShelleyIwouldlovetohearcommentsfrom theIDSA...really..... BobbyjoeHollidayMorgellonswhatwillwe do??.>>>>http://youtu.be/vBtTt9D6U0. LisaReedGaffneyYouthandchildrenthatsufferfrom MorgellonsPublicOutreach Lymeandcoinfections...NEEDTHEIRQUALITYOFLIFE www.youtube.com RESTORED!!!Theyhavenothadthechancetobarely livetheirlivesandtheirlivesarebeingtakenfrom PSA them!CHANGEISDESPERATELYNEEDED...anditneeds tostartwithyouhepingthemandtheirparentstohelp JanPoschHey,IDSA,don'tyathinkit'skindoffunny them!ITSTIMEYOUSTEPUPTOTHEPLATEANDGIVE thatthedifferentlevelsofgov'tseemtoholdtheview ofchronicLyme?What'sthat,yousay.Well,lookatall USWHATWENEEDTOHELPOURCHILDREN! thebillsandthosethatare alreadylaw. CarieSmallPleasedomore TammyHermaryPleaseadmittoyour toraiseawareness.Oneof faults,blundersandinaccuracy.Startto BobbyjoeHollidaycanyou mybestfriendshasbeenbed riddenforalmostTWOYEARS makeamendsbystandingupforallthose helpthehelpless???? becauseofthisawfuldisease whoaresufferingandchangeyour (thefirstportionwithouta guidelinestoreflectthetruth.Remember properdiagnosis)Ifshedidn't thewholeworldiswatchingyou! haveit,Iwouldnoteven knowwhatLymeWAS.That >>>http://youtu.be/Mw2nwTPKjQ8. righttheretellsmethatnotenoughisbeingdoneto makepeopleawarethatthisisaseriousseriousthing. ToalltheLymepatientsandcaregiversoutthere,hang MorgellonsDisease inthere...youallaresomeoftheverystrongestpeople www.youtube.com I'veseenandI'mconstantlyprayingforachange,a http://allstop.com/MorgellonsDiseasedoesn'thaveto cure,andmorehope! beadownhillbattle.FindHopetoday. www.allstop.com StephanieVandagriffMydadandIbothhaveLyme disease.Becauseofyou,we'vegoneundiagnosedfor20 KaylaAnnStricklinMyverybestfriendinthewhole years.Ourliveshavebeenruinedandpayedthousands worldhasLymedisease.Justbylookingatheryoucan andthousandsofdollarsfortreatment.Howmanylives tellhowmuchpainsheisin.Shehashadtomakeso havetoberuinedsoyoucanmakemoney. manysacrificesforthisdiseaseincludingschool,friends, andjustanormallife!Ithurtsmyheartseeingher suffereverydayandifIcoulddoanythingtohelpI LinseyLangmoResearchtheinfected,andwritenew would.IdoeverythingIcan.Iwentwithherandher guidelinesforpeoplewithchronicLymeplease! familytoherdoctorsappointmentinMissouri.Sheisin Kansasrightnowtryingtogettreatment.Andtraveling

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isaveryhardthingtodoforher.SoIamaskingplease PLEASElookintoacureforLymesomybestfriendcan havehernormallifeback. MaiaEvronaIwouldliketoseerevisedLymedisease treatmentguidelinesthathonestlyexamineanduse welldonescientificstudiesratherthancitingfaulty studiesthatsatisfytheconflictsofinterestofthe doctorscreatingtheguidelines. TrishAnthonyGraceThisyearIwantchronicLyme diseaserecognized.AndIwantdiagnosisbasedon symptomsandfollowedupwithIGENXsensitivetests.I wantassurancethatprimarycarephysicianswillnotask toseethebullseyerashbeforethey'lltreat.IWANT YOURHELPTOHEALUS!!!!!!M ToniKastelicI'dliketoseetheIDSAtakealeadership roleinthetreatmentofwhatyoucallPostLymes Disease.Thereisnothing'Post'aboutitbecauseithas neverbeentreatedorcuredifyoufollowtheCDC guidelines.CDCguidelinesand'mainstream'doctors' narrowviewpointontreatmentofLymesremindsmeof howdoctorsinitiallyrespondedtothemanysymptoms ofthefirstHIVpatients....beforeHIV/AIDSwere understood,treatmentstested,andfinallytreated aggressively.Thefirsttreatingdoctorswereostracized bytheirpeers.DOCTERS... Please1)beleadersinfindingtreatmentsthatare effective.Chemoisadangeroustreatmentbutlook howmanylivesithassaved.Longtermantibioticsis currentlytheonlywaytotreatChronicLymes.And2) havecompassionfortheLymespatientsyoudosee. Theirlives,thelivesoftheirfriendsandfamiliesareall adverselyimpactedbythisdisease.IknowofoneID doctorwhoannoucedtoherpeers"Sendmeyour patientsbutNOTLymesPatients." KathyTagudinCooperationwithILADSprofessionalsto treat,cure,andpubliclyidentifyLymeDiseaseforwhat itis...aMultipleChronicInfectiousDiseaseSyndrome. AlyssaParkeFinderMoreattentiontochronicLyme disease.Bothtreatment,insurancecoverage,&public attention.MyauntsuffersfromchronicLyme&I've seenhowseriousthediseaseis&howmuchitcan changeaperson.Thisdiseaseisstillmisunderstood& peopleneedtolearnmoreaboutittoeducateboth themselves&theirfamilies

JessicaWittyI'dliketojointhecrowdinsayingthatI'd lovetoseeacknowledgement,support,proper information,andpropertreatmentforthoseaffected withchronicLymedisease.Myhopeisthat2012isthe yearthatchangesaremadebytheIDSAthatdoctors willbeeducatedonwhatistrueaboutchronicLyme andthattheywillbeabletotreatpatientslegallyand withoutfearandthatitistheyearthatmyfriends withchronicLymewillregainwhathasbeentakenfrom them. RobinRichmanMorrisIwouldlikemoreindepth communicationbetweenIDSAandILADS.Iwouldlike eachmemberofIDSAtoreviewcasehistoriesofpeople whoweresuccessfullytreatedforlatestagetickborne diseases,thatreviewtobewithmembersofILADS.For allmembersofIDSAtoattendanILADSconference.If thisstuffisn't'real'thenwhatisit?Suchalarge populationofmostly'typeA'personalitiescan'tallbe hypochondriacs....Iwouldhatetowishaninfections diseaseonanyone,butsometimesfirsthandexposure isallittakes.Letsgetsomethingproductivegoingthis year. GlenSearcyCaremoreaboutthepublic'shealththan thepublichealth(andinsurance)industry. ValarieMurphyIhavereadthroughmostlyallthe853 comments(asofnow).Ihavenotfoundasingleone thatiscomplimentarytoIDSAandwhatitisdoingto Lymeandassociateddiseasesufferers. JamiManninaHurdLymediseaseandcoinfections recognizedforwhattheyare...chronicanddebilitating. MelodyMoorePeckhamFortheheadsoftheISDAto livewithaLymepatientforoneweektoseewhatwe gothrough.Eachandeverydayisastrugglethanksto yourcurrentguidelines.Mayyouwalkamileinmy shoes....andtheshoesofcountlessothers. TerrillEspositoIhopewithallthecommentsreLymes therewillbesomechanges.Unlessoneliveswithitor someonetheyloveliveswithit....youreallyhaveno idea...Weneedsomechanges. RyanGarrettJonesLyme'sdiseaseshouldbe recognized. DeborahGilleyMyhusbandandIhaveLyme.Hetook anearlyretirementfromhistradetotrytobecomeself employedbecausehewasgettingsicker,(terrible

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unrelentingpain,etc.notknowingtherealproblem).He hadbeento9doctorswithdifferentdiagnosisand medsuntilwereadanarticleinthepaperdescribing thesamesymptomswhichhehad.Wecheckedintoit ourselvesandwastestedpositive.Sonowsincewehad toliveonhisretirementpensiontopayourmortgage, otherbills,meds,wehaveusedalmostallofit.Weare beingtreatedbyaLLDocsohopefullywewillbewell soonandwon'tloseourhouse.TICKSBITELYMESUCKS ValarieMurphy @BobbyjoeHolliday,Iwatchedyour Morgellansvideo.Whatbetterwaytokillanystudyor awarenessthantoputitinthehandsofanHMO (Kaiser)whosebestinterestisservedifpeopleARENOT treated.AnHMOnearlykilledme. TomMortonJustincredibleandeyeopeningtoread theseposts.... VirginiaCarrollIwouldliketoseeacureforLyme,but thatmeansyouwouldhavetomeanthatchronicLyme existsanditwouldtakemorethantendaysondoxyto cureit.Goodgrief...becauseoftheignoranceofIDSA doctorsIhavebeendx'dwitheverythingfromchronic migraines,totrigeminalneuralgia,toMS.Funny....when IstartedtreatingchronicLymeallthoseother symptomswentaway!Thanksforhelpingmetolose14 yearsofmylife....whatabout'firstdonoharm'? MaryBushIDSAshouldpassthebatonfortreating chronicinfectiousdiseasetorheumatologists,who probablyhavemorepatienceandadvancedmedical training.Whatsayyou,IDSA? NeilHueyJustonequestionfortheISDA...canthat nastySTD...youknowthatcousintoborellia,whichis alsoaspirochete,manifestasachronicdisease?Andif so,thenwhynotLyme,nottomentionothertickborne disease? KerstenDionneHeidelMoreinformationaboutLyme disease!!!! DougPearlDecidewhoseinterestsyouaregoingto servethoseofthepeopleorthoseofbigmoneyand bigbusiness.MostofAmericahasbeenboughtoutby thelatter,includingIDSA.Pleaseleavethedarksideand cometotheaidofthesick. Andyes,acompleteoverhaulofpolicyregardingLyme disease.It'sadisgraceandacrime.

MaryDeLisserWhatI'dlikefromyouisaformal apologytoDrsJones,Murakami,Hoffmannetal. MargaretMcCormickPretoRodasIDSAIimploreyou towatchtheattachedvideo.ItisalittlelongandVERY hardtowatch,butIguaranteeafteryouwatchityour opinionaboutLymewillchange.Toomanypeopleare needlesslysufferingincludingmybeautiful16yrold daughter.Youhavethepowertostopthissuffering.Pls plsplsdoitbeforesomeoneyouloveisstrickenby Lymeand/orothertickborneillnesses. OurStoryLife,Love,Lyme,andFaith www.youtube.com StevenLeninskiStarthelpingpeople,investigatethe menthathavemadetheIDSAahateduntrusted Laughingstock. TammyHermaryPleaseadmittoyourfaults,blunders andinaccuracy.Starttomakeamendsbystandingup forallthosewhoaresufferingandchangeyour guidelinestoreflectthetruth.Rememberthewhole worldiswatchingyou! BarbaraFletcherRusnakRightNeil,andyoucan'ttreat thatbacteriawith10daysofDoxyeither.... RobinGunnDidIDSApostthisquestionjusttotaunt us?Ihopethattheyintendtodramaticallyrevisetheir Lymeguidelinestocomeintolinewithreality,biology, andscience.TheIDSAisintherarepositionwherethey canbothdowhatisrightwithLymediseaseandactually makemoremoney.WhygoondenyingthatLyme diseaseisarealproblem?IDSAdoctorsyouhavealot ofpatientswhoNEEDyou.BEworthyofyourname. TreatLymedisease.ORgetoutofthewayandletother peopledoit.Justthrowawayyourguidelinesandlet ILADStakecareofus. MarkBentzChangetheguidelines/opinionsonLyme disease/ChronicLymedisease/LateStageLyme disease/reoccuringLymedisease!ChronicLymedisease islifechangingandneedsmorerecognitionbythe medicalcommunity.Lymeisoneofthefastestgrowing epidemicshappeningrightnow. BarbaraFletcherRusnakIseelotsofquestionshere, butnocommentsoranswers.Weneedanswersand help.Insteadofmakingupnew"Syndromes"andnew brandnameonlydrugstotreatthesymptoms,wewant acure,wewantourlivesback.IalsowouldlikeCipro

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C.D.C.doesn'thelptocurenowover300,000people andLevequinlookedinto.Thosedrugshavemademany worldwide(morewilljoinussurely)&thisisafact!!! ofuswayworse! DianeCylikPleasetakeLymeseriously>>>Atickbiteis MaureenDalyRealisticguidelinesplease.Otherwiseit's natureswayofstickingyouwithadirtyneedle. not'mysociety'. DinahGrossIwanttoseetheguidelineschangedfor KimBrownIwouldliketorequestthatIDSAreviewthe Lymediseasesoitcanbediagnosedandtreated.Thisis manypostspostedhereinregardstotheprevalenceof aterribledisease. Lymeinoursociety.Thisisnotanimaginarydisease.So BryanSandersIwouldliketoseeallcurrentemployees manylivewithchronicinvisibleillnessesanditisa travestytobetreatedasa"nut"orthatitis"allinyour getfiredandhiresomeonewhoknowswhattheyare head"whenyoutrulyhaveamedicalconditionthatis talkingabout.Idon'tknowoneperson"cured"or goingundiagnosedanduntreated.Weneedtowakeup feelingbetterfromyourguidelines.Doesn'tthattellyou andaddressallaspectsofmedicaldiagnosesinour something?Wakeup! societytodayandnotlimitittothediagnosesthatget alloftheattentionandmediafromhollywood ChelseaWoodringI'dliketogoadayjustaDAY supportersorpoliticalagendas.Lymeisarealcondition. withouthavingtotalktosomeonewithChronicLyme Thanksforlistening! whoisinchronic,agonizing pain,orsomeonewhoisin SaraE.Mason Iwouldliketosee JuneWhiteheadyeah mentalanguish.Iwouldlike acknowledgementofchronicLyme(and apoligizetodrmurakamiand togoadaywithoutsomeone related) infections by the society, otherswhotrytohelpus jeeringatmylimp,onesaying insteadofleavingusto totheother,"She'sgotLYME. validationofthesufferingofmany,and Likedogsget.Whatever."It actiontoaddressthishidden,denied,and die!!!! tookmeabout10yearsto poorlyunderstoodepidemic. getadiagnosis.Imake SimonDragonshadow moneythroughtaking Pearce surveys.Thereisnotaday __________________________________ A)anacknowledgement thatitdoesnothurttoeat,to MichealBurkePublicallyrecogniseLyme LymeDiseaseactuallyexists. sit,tostand,totalkabout B)anapologyandadmission Disease for the awful disease that it is. whatisgoingonwithmeand thatitcantakeyearstotreat, whathasbeengoingonwith notweeks. mefor10yearsandwhatwill continuetogoonwithmefor C)guidelinesrevised,more therestofmylife.Mystoryisoneofmany,asyoucan DoctorstrainedtotreatbothLymeandChronicLyme clearlysee.WhatIaskfor?Help.Support. RECOGNITION. D)lessmisdiagnosisandpatientstreatedproperlyfirst time. BambiAlbert https://www.facebook.com/photo.php?v=3400584326 Thatisall. 80545 LaurelWhiteI'dliketoseeLymediseasepublically recognizedastheawfuldiseasethatitis.Ihave BryanSandersIfthereisnochronicLymeandit'sso struggledwithitforoverfiveyearsnowandIcan'teven easytocurethentakeallofyourtopboardmembers andletthemgetbitbyaninfectedtick.Thenwaitafew counttheamountofdoctorsthathavetoldme'I'm yearsandthentellushowhelpfulyouandyour crazy'or'It'sallinmyhead'...thisdiseaseneedstobe guidelinesaretothetrulysick. recognizedbydoctors. BobbyjoeHolliday @ValarieMurphyit'sbeenkilled TrishMcClearyRocognitionofChronicLymedisease anyway,areyoukiddingmetheC.D.C.hasbeensitting andeducationtophysiciansregarding2standardsof onastudyforMorgellons&stillhasdonenothing,the careavailable!ILADSstandardofcaresavedmylife. onethingIknowasafactiftheGovernment&the

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JuliaBjerreIwouldliketoseecleartreatment guidelinesandapproveddoctorsandInfectiousDisease Dr.strainedtoproperlytreatLymepatientsespthose withchronicorlatestageLymedisease. SaraE.MasonIwouldliketoseeacknowledgementof chronicLyme(andrelated)infectionsbythesociety, validationofthesufferingofmany,andactionto addressthishidden,denied,andpoorlyunderstood epidemic. MichealBurkePublicallyrecogniseLymeDiseaseforthe awfuldiseasethatitis. LisaWebbJordanWell,Ithinkithasbeensaid.Chronic Lymeisarealdiseaseanditistimeforthephysiciansto geteducated.Mydaughterhassufferedfor4years.We havebeento15differentphysiciansandspecialistswith noonebeingabletohelpher.Shewasleftaloneto sufferforyears.Shecan'tgotoschoolorparticipatein sportsorevengetdressedinthemorningwithouthelp. LastmonthwefinallygotadiagnosisofLyme.Iwishmy physicianknewmoreaboutthisdisease.Especially whenmydaughters1stLymetestcamebackequivocal andshowedallthesymptomsbutshewouldn'ttreat becausetherewasn'tabitewitharing.Iwishoneof youwouldwalkinmydaughter'sshoesforaday.Itis unfairandcruelwhatisbeingdonetopatientswithlate stageLyme.Timetoworkonacure. CaroleStockerHallPleasemakethisyeartheyearthat themedicalcommunityrecognizesthatChronicLyme Diseaseisadevastatingdisease,andit'sgoingtoget completelyoutofcontrolifyourguidelinesaren't correctedtoreflectthetruth.Alldoctorsshouldbe LymeLiteratesothatquickdiagnosescanbemadeand treatmentcanbestartedandkeptupforhoweverlong ittakes,withoutthefearoflosingtheirlicenses. ChangesneedtobemadeNOW!!! LisbethBrendleDannerIwouldliketoseealloptions fortreatmentonthetable.Rightnowthepatientshave nooptionsandtheguidelinesaresostrictthatmost doctorswhofollowthemonlylookatlabresultsand forgetthepatientandtakingintoaccountsymptoms. Pleasetakealookatthesuccessstoriesofpeoplewho havebeentreatedinadifferentoftenmoreaggressive manorandworkthethosedoctorswhohavehad successgettingpatientswell! JudyKargelDwireIwouldliketoseeachangeinthe protocalforLymeDisease.Ialsowouldlikeforthe

doctorsthataretreatingLymewithlongterm antibioticstobefreetodosowithoutotherdoctors comingdownonthem.Ialsowouldliketomore researchonLyme,perhapsfindingabetterwayof testing,goodantibioticsusedtokillthebugs.Forthe IdsatosaythereisachronicLymeandthattheywant tohelpbethesolutionnottheproblem. MelissaDempseyPubliclyrecognizethatlongterm antibioticshelpchronicLymeinthemajorityofcases. Yourresearchusedforyourguidelineswasdoneby individualswithaconflictofinterest.Yourapolitical forcethatischeatingthepublicoutofthetreatment theyneed.Youattackdoctorswhogivepatientsthe treatmentthatprovidesrecoveryfromthishorrible disease.Iamahealthcareproviderthattreatesmy patientslikeIwouldtreatmyfamily.Itstimeyoudothe same. RickGrossItravelfromChicagotoWashingtonDCto gettreatmentformyLyme.Figureouthowgetdoctors knowledgeableindiagnosingthedisease.Notoneof the13doctorsIwenttoinIllinoishadacluewhatLyme diseaseisorlookslike. KaetheMitchellMydaughtertestedCDCpositivefor Bb(Lyme).ThatmeanstheCDCrecognizesallthe positivebandsonherwesternblotandagreesshehas Lymedisease.WhenIcalledourcountyhealth departmenttoreportit(BroomeCounty,NY),the womantowhomIspokesaidshecouldnotreportthis casetotheCDCbecausewehadnotdonethe"two tiered"testing,iewedidnotdoanELISAfirstandifthat werepositive,THENthewesternblot.Weskippedthe ELIZAbecauseithadprovedtobeworthlessformy otherchild(negative,followedbyapositivewestern blotyearslater,whichwefoundoutaboutdoingonour own).Doesitmakeanysensethatthiscaseisnot reportedasastatistic?IDSA,why? JacintaCoxAcknowledgeandupdaterecommendations forchronicLymedisease...it'stimefortheIDSAtokeep upwithbiofilmresearchinregardstoLymedisease. DebbieThompsonIamoriginallyfromLongIsland,NY, andmovedtoFloridain1977.Dunedin,Florida.Iheard "inyourhead"tilIwasalmostdead,bydoctors,for manyyears.I'vehadtheseinfectionsforsolong, undiagnosed,thatmychildrenwerebornwithit.One InfectiousDiseaseDoctor(surprisingly,anIDSA member),wastheonetosavemylife.IthankGod everydayforher.ShefoundLyme,RockyMountain

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SpottedFeverandTyphus,andthere'sprobablymore thatIhaven'tbeenabletogettestedfor.Thatwasin 2007.Withoutherwisdom,bravery,andcompassion,I wouldnothavelivedtosee2008.ItellallmyLyme friendsthatnotallIDSAdoctorsarebadeggs.Iknowof onerealdoctorinyoursociety!Youfolkscouldlearn alotfromthedoctorswhoareonthefrontlines,and actuallytreatingthispandemic! CourtneyLynnDosomethingbetterthanwatching people`slivesberuinedbythisdiseasewhiledoing nothingaboutit. ImanWoodsDoSOMETHING. KimberlyAldrupOttoTRUTH!!! RafalReinfussWhatwouldI(asaLymepatient)liketo seefromyou,IDSA? stopdenyingtheproblemwehavewithchronicLyme diseasestarthelpingtofindasolution. Pleaseaddressthesimplefacts: Borreliainfectioncanpersistdespiteshorttreatment andfrequentlydoessothereisplentyofscientific materialprovingthisclearlyandexplainingwhythis happens;syphilisspirochetespersistandthesevere consequencesofthisfacthavebeenknownfordecades now!HowcomeBorreliaspirocheteswouldbesomuch different? Borreliacanformbiofilmsandthereisdirectevidence ofthatmakingLymeapossiblychronicdiseaseby definition chronicLymediseasecannowbeprovenDIRECTLYby culture;therewillbesomuchmoredirectevidence comingsoon! thiswillalsodirectlyprovetheexistenceof seronegativeLymedisease,sendingyourrecommended ELISAtestingtothebin IDSA,pleasestopignoringsubstantialscientificmaterial thathasalreadybeengatheredoutthereandstart listeningtotheREALexperts.REALexpertsarethose whoCANtreatwhatotherscannotordonotwantto. TheproblemofchronicLymediseaseisnotgoingaway. Theproblemisgrowingandthereisnomoreroomfor denial. ItisnotjustAmerica,IamwritingthisfromPoland. Peopleaccrosstheglobeareseverelyaffectedbyyour malpractice.Ladiesandgentlemen,thisshameison you!

KarenMetcalfIwouldlikeyoutotakeanunbiased, freshlookatchronicLymediseaseandassociatedco infections.Thesymptomsarereal.Therearetoomany ofuswhocan'taffordthemosteffectivetreatments, andmostofushavepermanentdamagedueto misdiagnosisand/orlimitedtreatmentoptions.Please makeanhonestefforttoanalyzetherealdataavailable andhelpus.Please...helpus. BarbaraLinkJonesIamsohappytohavemydaughter back.Lymeis"Real!Ipraydoctorswilldoheirresearch andhelpallpatientssufferingfromthisterribledisease. RichardShelleyFOCUSonacure,notacoverup...hold yourheadshighandgettowork,it'stimeforacure MelissaZancanellaDunnI'dliketoseethestanceon LymeDiseasechanged... NicholHebertAcknowledgebothacuteandchronic Lymedisease,Updatetreatmentsforbothacuteand chronicLymedisease.EducatethepublicandDOCTORS aboutbothacuteandchronicLymedisease.TREAT individualswithacuteorchronicLymedisease!!! JennyO'DeaIwouldliketoseethewesternblotbands beputbacktobeforethedearborncommitteedays,no morerestrictivebands,nomorerestrictiveguidelines, Lymediseaseisnotaonesizefitsallillness&should notbetreatedassuch!Chronic,persistentinfectionhas beendocumentedinanimals,justbecausewe'rehuman doesn'tmeanwe'reallmakingitup!Bysaying somethingdoesn'texiststiflesfurtherknowledge& expertise,especiallywhenthosewhosayitdoesexist areridiculed,finedorlosetheirlicense.Timetomake somebigchangesfor2012! RandBoydAppropriateguidelinesfortreatmentthat addressthemanyfacetsofthisdisease.Moreresearch intoacureforchronicLymedisease.Andanawarefrom doctorsthatitisarealandnotimagineddisease.Fora diseasethatdoesnotexist;theresurearealotof peoplethataresufferingfromit.Allofthemcannotbe imaginingthesymptons. MaryMichaelIwouldlikeLymediseasetobe addressedandthecostoftestingandtreatmentcosts recognized.Itseemsliketreatmentandtestingfor otherdiseasesarecoveredbyinsurancesandtheprices arenotoutofpocketchargesoroutragous.

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SheriMahoodRecognizethatthereisaproblemwith thetestingfirstofall,andthatallthepeoplewhoare sufferingcan'tALLbecrazy;therereallyISsomething wrongwiththesepeople.Howaboutconnectingwith IGENEXLabinCaliforniaanddiscussingthetestsand theresultstheyarefinding.Howaboutconnectingwith ILADSwiththeintentionofreallylearningsomething abouthowtotreatthisdisease?Oh....thereareso manythingsyoucoulddoifyoureallywereinterested inhelpingthoseofuswhoseliveshavebeendestroyed. Compassion.... IngridBoutilierMcAdam...foranyoneofIDSA memberstofindaconscious...Iknow...completelycrazy thoughtandhighlyunlikely!! SeppiGarrettWeneedrealanswersonLymeandthe coinfections.Tonotonlycausesdistrustanddisbeliefin yourdesiretohelpus. KimberlyAldrupOttoItmakesyoulookcareless, uneducated,greedy,todeny100's,1000's,and100sof 1000sofpeoplearoundtheWorldthatknowmore thanyoudoaboutadiseasethathasbeenaroundfor over40years.Ridiculoustohavesuchadiseasethisday andageintheUnitedStatesofAmericaandaroundthe Worldbedenied.Youcan'tdenyusanymore,thisis enoughevidencetoputyouinyourplaceofNEGLECT. LindseyGalliganI'dliketoseepublicrecognitionthat useoflongtermantibioticsandIVtherapyimprovesthe healthofLymepatients!I'm18yearsoldandI'vebeen sufferingfromLymeandacoinfectionsinceIwas13. MyLymespecialistsavedmylife.Iwantfocusonacure forthiseasytocontractandhardtodiagnose/treat diseaseanditscoinfections! TressaPearsonFranksBraamPleasechangeyour stanceonLymeDisease.Therearesomanyofus sufferingandweneedyourhelp. JaneSmithLymeissilentlykillinganddisablingmany people,anditisbeingmisdiagnosedasCFandFM.We needtoincreasetheparametersofdiagnosticcriteria. Peopledonotrealizeitisaspirochete,likesyphilis,and hasthesamesymptoms,andoftenhasupto4co pathogens!Itwilldisabletheimmunesystem. MichelleShafferForthoseofusw/LymeDiseasewhich wasNOTcuredbyDoxy,pleaselookdeeperintothe diseasebeforegivingguidelinewhichdonotshowthe wholepicture.ItestedpositiveviatheWesternBlot

twice.The2ndtestshowedevenmorebandsthanthe 1st&wasdonemonthsaftertaking6wksof Doxycycline.Itookitexactlyasprescribed,sothisisnot acaseofnoncompliance.Also,Ihadbeensickfor about3yrsbeforeIwasdiagnosed.Severaldoctorsin myarea(Houston,TX)toldmewedonothaveLymein thisarea.Iranacrossthesymptoms&hadtoASKtobe tested.DoctorsNEEDtheinformationtohelppatients, andwhenyourguidelinesgivethemincorrectinfo,how cantheytreatpatientseffectively?Atthispoint,I've beenillfor15yrs.Betterguidelinesfordoctorsmight havepreventedthis&hopefullywillhelpothersinthe future. MikeGeraciMoreresearchneedstobedoneonLyme Diseasetocomeupwitheffectiveandaccurate treatmentguidelines.Thecurrentguidelinesproveto beineffectiveleavingmanysickandhelpless.Utilize yourresourcesandmakeadifferenceinthemedical communityandhelpthosewhoareinneedof professionaladvice.Moreimportantlygivetheright advice! NinaMooreJustdotherightthing!!! BricilyJuleKaufmanConsiderallofthesecommentsa smallsamplingoftheplightfacedbycountless sufferers.Withthatinmind,givethesecommentsthe weighttheydeserve.Doesitmeanmoretoyouifthere arethoseofuswhoWEREhighlyeducated?Whowere successful?Isaywerebecausewe'vewatcheditallbe takenawaybythisillness.Regardlessofsocioeconomic statusoreducationwehaveallsufferedthesamefate. Wehaveallfallenfromgraceandnoneofuswillever bewhowewere.Everydaywelookinthemirrorand sayrememberwhoyouwereisreallywhoyouareand keeptryingtogetyourlifeback. ChronicLymeisrealanditrobsusofourqualityoflife everyminuteofeveryday.Itstealsfromourchildren, ourlovedones.Itisnotlivingitisbarelyexisting.Your dismissivenessisbeyondreprehensible.Whatdoyou saytoyourselfwhenyoulookinthatmirror?Betteryet, howcanyou?Findme.Askme.Likecountlessothers,I willtellyouandshowyou.Ifyouknewme,youwould havenochoicebuttoadmityouarewrong.And,ifever thedaycomesthatevenseesmejustbetter,Iwillstand upandfight.Inthemeantime,itisyouwhoare supposedtobefightingFORUSnotagainstus.Andif youcan'tdothat,dothehonorablething...bowout, disband,takeapassandgetoutoftheway.Eitherdo that,oradmityouarewrongandmakeitright.

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LindaFordDavisHowcanyourunrealisticguidelines evenbegintocomparewiththethousandsofpeople sufferingchronicLyme.Howcanyousleepatnight? DebLabarberaIwouldmylifeback....thelifeIhad beforeIwasmisdiagnosed,mistreated,dismissed, ignoredandlaughedatwhilesearchingforsomeoneto treatmeforchronicLymedisease.Canyougiveusour livesback?Ifnot,canyoupleasechangeyourguidelines sodoctorsareNOTafraidtotreatusinfearoflosing theirlicense?IrecentlylostmyLymedoctorbecausehe wastreatingchronicLymepatients.Nowthereare thousandsofhispatientswithnowheretogo.Iwas recentlyhospitalizedfor2days.Thedoctorwho observedmetoldmeIhadfibroandneededtoseea psychiatrist.Heobviouslyneverlookedatmychart.My bloodworkshowedthereweremanythingsgoingonin mybodythatneitherfybronormentalillnesswould cause.Youhavebroughtthefearupondoctorstotreat thoseofuswhoneedhelptoLIVE.WHY?Ireallydonot understand.ThisdoctortookmeoffmyLyme treatmentandIrelapsednowbackatsquareoneand VERYsick. Wouldacancerpatientbetakenofftheirchemo?I thinknot.WouldanAIDSpatientbetakenofftheir treatment?Ithinknot.SoWHY????Whyareyou dismissingchronicLymediseaseexists.Ifitisbecause bloodworkdoesnotalwaysshowapositiveresultfor Lyme...wellneitherdoesfibroORmentalillnessyet doctorsaresoquicktodiagnoseuswiththingssuchas fibro,mentalillness,CFS,ChronicPainSyndrome,IBS, RestlessLegSyndrome,CarpalTunnelSyndrome,etcI donotbelievethoseareshownuponbloodtests either.ChronicLymediseaseisnotonlytakinglifeaswe knewitawayfromusbutforsomeitiskillingus. Please.....Pleaseeducateyourselves.Educateothers. ButEDUCATEtheTRUTHaboutchronicLymedisease andNOTthemistruthstosavemoneyforinsurance companies.http://www.myblindspotjourney.com/ ShellyScottLOLIhatetopointthisoutbutushould noticethequestionswasNOT"whatwoulduliketosee frominfectiousdiseasesociety"itSAYS"fromYOUR society"meaning,notaskingwhatuthinkaboutabout themLMAO! MikeGarroneIndependentstudiesonChronicLyme Diseaseplease... DebLabarberaItmightbetoolatetohelpmegetmy lifeback,butIhopeandpraythatPOSITIVEchangeswill

bemadeformychildren,grandchildrenandeveryone elsewhounfortunatelygetsthisrapidlygrowing disease.Pleasehelpus.Peoplehelpourchildren. AlishaMestonMydogwasdiagnoisedandtreated betterandfasterthenahuman!!!Howisthispossible? JasonLipsettIgnoranceandselfservingbiasesare makingthelivesofpeoplewithLymediseaseeven moredifficult.Notonlyaretherethousandsprevented fromgettingthenecessarytreatmentbutthereisunfair stigmaattachedtothoughstrugglingwiththe debilitatingdiseaseanditscoinfections.TheseareNOT desperateindividualslookingforanythingtoblamefor alltheirproblemsandtheseareNOThelpless individualswhoaretakenadvantagesbyquackdoctors andlabs.Theseareinsteadpeoplewhoneedtoget betterandaresadlysometimesforcedtobebecome theirownselfadvocateinordertodoso.Nobody enjoystakinglongtermantibioticsandsupporting medication,butaswearelearningmoreandmore everydaytherereallyisnoalternative. Whilesomeofyoudoacknowledgethatthereare peoplesuffering,youstillhaventchangedyour viewpointsincetheverybeginningwhenwedidnthave alltheresearchandknowledgeabledoctorsthat thankfullytreatwhatisChronicLymeDisease.Thereisa moralobligationforyoutocompletelymodifyyour guidelinessopeoplecanactuallybehealthyonceagain. Thisisamajorproblemthatstemsfromthetop.Ifyou openyoureyesitjustmightamazeyouonwhatyou mightfind. LindaPratherNeviusPleasereviewyourpolicieson Lymedisease.Newresearchsuggeststhatspirochetes aremoreresistantinsomepeople.Alsobettertesting criteriashouldbedeveloped.Thisdiseaseisspreading rapidly.IliveinGeorgiaanditismorecommonhere thanisbeingreported GinnySchmalixPleasereconsideryourstanceon ChronicLymeDisease.Developrealisticguidelinesfor treatment.Advocateforyourpatients.Traindocsto recognizeChrinicLymeDisease.Therearemanythings youcoulddotofixyourwrongs.Somanypeopleare suffering.Iknowyoucoulddogreatthingsifonlyyou'd listen. KathrinLymeEbelingWhileIDSArefusesto communicatewithILADSandacknowledgepersistent LymeDiseaseor(Neuro)Borreliosis,billionsofpatients

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informingthemedicalcommunityofeffective aresufferingwithachronicanddebilitatingdiseasethat treatmentguidelinesappropriately. isalreadyepidemic.ThisisnotonlyaffectingLyme diseasepatientsintheUS,butallovertheworld. JoanneVerasBullHelpeveryonethatneedshelp.. AngelWilliamsSpellihaveaquestion....aretheboard Thesepeoplearesufferingandnothingishelping ofCDCandtheboardofIDSAELECTEDORAPPOINTED? BrittanyWeddIwentfromstudyingAstrophysicsand S.c.SorensenLookatalloftheseLymecomments!Im preparingtogotoaschooltogetmyBachelorsand notsayingI'msurewhattheRIGHTtreatmentis,but thenMastersdegreeonit,toworkingatagasstation. youshouldstartacceptingthatthisisarealproblem Thoughalltheformulasandtheoremsarestillupthere, thehungerandquestforthebasicsstillraging,itis thatwillonlygetworse.Helpus,please.Leavethe slightlydifficulttopursueadegreeinANYTHING,when politicsbehindandreexaminehowyouhandlethis you'refacing$5,000monthlyprescriptionanddoctor terribledisease. treatmentsforadisease/diseasesthatsocietywont accept.I'vebeenwithouttreatmentnowfortwoyears RevaCottonMoreresearchandacureforChronicLyme andforyoutoadmitthatitexistswouldbeagreat becausethepriceofmytreatmentsweretoohigh,the start!!!!!!!!!!!!!!!! infectiousdiseasspecialistcallingmyLymespecialista quakandtellingmethatLymeisnotpersistant,that CarolLSmithIlivewithapersonthatnearlydiedfrom NeuroBorreliosisisnonexistent,andthatI'mlying chronicLymediseaseandwasmisdiagnosedfor15 simplytogetpainmedicine,wheninactualityIwould years.Supportthepeoplewithchronicillnessesinstead justlikeanantibioticotherthanDioxcylinethatdoesn't oftheDoctor'sthatdonothaveaclueaboutthis costmetheexactpriceofmyKidneys. disease. Iwouldjustlovetohaveonemonth,justONE,ofIV treatments.Butinstead,thatisuntilIDSAcanchange RichardShelleyWepayyoursalary,nowgettowork theirparametersonthisdiseaseandthevarious findingacurealready... COINFECTIONSthatcomewithit,Iwillbestuckworking atagasstationbarelymanagingtosurvivethehours DawnGilesIwouldlikethelast16yearsofmylifeback. thatIworkwithoutpassingoutfromthepain,without ChronicLymeexistsandneedstoberecognizedforthe havingaseizureonthesalesfloor,withoutforgetting destructionitcauses. everysinglething,andmaybejustmaybenotburnmy handsandarmsfromthelack JustinTolanPleasebe honestaboutLymedisease, JustinTolanPleasebehonestaboutLyme offeelingthatiseverpresent there.Newyearsresolution?? itsprevalenceandwhat disease,itsprevalenceandwhatdocs docsshouldknowtotreat shouldknowtotreatit.Livesarebeing CarolGrahamShekharIwould it.Livesarebeingruined liketheIDSAtoreconsidertheir andlost,andarroganceand ruinedandlost,andarroganceand positiononLymedisease. politicsseemtobethe politicsseemtobethewinners. Twentyonedaysofdoxydid winners. NOTworkformewithanearly diagnosisandimmediate Julie'Hamm'HagenThe ________________________________ treatment.Myillnesswas existenceofLyme,chronic Julie'Hamm'HagenTheexistenceof confirmedbyapositive Lyme,acureand Lyme,chronicLyme,acureand WesternBlot(labcorp) education. education. approximately68weeksafter theonsetofmysymptoms.My RitaRyanIwouldlikeIDSA PCPdiagnoseditclinicallyand tobecomeareliable starteddoxycycline100mgbidwithin5daysofthe resourceforthedisseminationofinformationrelatedto onsetofsymptoms.Mysymptomsbegantoresolve LymeDisease,andtoendtheapparentpolarizationof within24hours.Attheendofthe21days,however,I LymeDiseasepatientsandpractitioners.WeneedIDSA continuedtorunalowgradefeverintheafternoons.I toworkwithus,onourside,helpingLDsufferersand sawanewPCPonthe23rdday.Basedonthisfever,

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andtheepidemicofLymeinourarea,thenewdoc addedanother90daysofthesamedoseofdoxy.After approximately45daysofdoxy(withatwodaybreak),I begantoexperiencemuscleweakness,fatigue,and moodswings.MyPCPadvisedmetostaythecourse withthedoxy.Ibecamerapidlyandprogressivelyill, becomingunabletodrive,work,orcareformyselfand my4yearoldchild. IfoundanLLMD,whoprescribedBiaxinandRifampin (clinicaldiagnosisofBartonella).Within8days,the moodsymptomsweregone.Theothersymtpoms improvedslowlybutsteadilyoverthecourseofa monthbasedonmydetailedsymptomlog.Seven monthslater,Iammuchimproved,butstillstruggle withmuchlessseverefatigueandacoupleodd(butnot troublesome)symptoms.THEBOTTOMLINE:IfLyme washardtogetandeasytotreat,Ishouldhavebeen wellwiththe21daysofdoxy.Iwasnot.Different medicationsworkedquickly.Iamlucky.Somanyareso muchsickerthanI.Still,myexperienceshouldbe enoughtowarrantreconsiderationoftheIDSAstance onLyme. TracyGarrettHughesPleaselookatyourtesting protocolsforLymeDisease!Reconsideryourguidelines fortreatingLymeandyourbeliefaboutChronicLyme.I havebeenfightingthisawfuldiseasefortoomany years!Iamtiredofbeingmisdiagnosedandfordoctors nothavingtheknowledgetheyneedtocombatthis terribleepidemic! MarissaBellaCassellaIDSA,Ihavebeensufferingwith Lymeandseveralcoinfectionsformanyyears.I'monly 19yearsold.Pleasehaveheartanddotherightthing andchangeyourguidelinestothecorrectinformation. Thearthriticpain,bonepain,spinepain,GIpain,head pain,nervepain,cognitivepain,andneurological impairmentsthatIamfacedwitheachdaycouldhave beenpreventedifIwasinformedcorrectlyaboutLyme disease.IblameIDSAfornotbeinginformedcorrectly.I hadtogiveupphysicallygoingtoschool,danceschool, walking,havingasociallife,etc,becauseLymeended upcausingparalysisinmylegs.Thisisserious,Lyme diseaseisreal!Withtheproper,longtermantibiotic therapy,andIVIG,Iamnowwalkingagain,afterTHREE YEARS.ThosethreeyearsIwillnevergetback.Ithinkof otherkidswhoareyoungerthanmewhoaresickwith Lyme.Youhavetakenawaytheirlivesbecausethey cannotfunctionwithLyme.Theycannotgettreatment becauseofyourguidelines.Uschildrenarethefuture, sowhywon'tyouchangetheguidelines?Howwould youfeelifyourchildwasinfectedwithLyme?Oryour

spouse?Theywouldbebedridden. Lymediseaseissheertorture.Noneofuseverthought thatgoingoutside(especiallyinareasinwhichyou consider'nonendemicareas')wouldgetbittenbyan infectedbugandbecursedwiththisillness.Youcan't keeprefusingtobelieveinanillnessthatthousandsand thousandsofpeoplearebeingdiagnosedwith.UsLyme patientshavehadourlivesflippedupsidedown.Some don'thavehomesorautomobiles.Youknowwhy? Becausetheycan'taffordthemduetopayingoutof pocketforLymeliteratedoctorsandpropertreatment. Manypeoplecan'tevenworktoearnmoneyfor treatment.Youknowwhy?Becausetheyarecrippled fromLyme.PLEASEchangeyourguidelines.Thisdisease almostkilledme.Pleasestartacknowledginghow devastatingCHRONICLymediseaseis. DianeOstranderOpenyoureyesaboutLymeDisease. Requirecoinfectiontestingforeveryonediagnosed withLyme.TheLymeandcoinfectionsrunningloosein thenationsbloodsupplyisacrime.Lowerthebar...so thatpeoplewhostillhaveLymecanberetreated.Test thedarndonatedblood!Diagnosedin1995.Istillwas onebandshortofbeingretreatedforalltheseyears.So verysick...soveryunfair.Paidoutofpocketforaco infectiontest.IhadBabesia.Why?WhydidIhaveto sufferforsomanyyears?Howcanyouallowthistogo on?Peoplearedying,peoplearesick.Thenyouallow theentirebloodsupplyinthenationtobecome infectedwiththisdebilitatingillness?Makeitstop!And becauseofmyshorttreatment...it'sBACK!thanksso much.Doyourjobtohelpkeepuswell.Openyour mindsanddotherightthing. DeniseLongmanAfterhavingresearchedLyme literaturesince2005,Iamcompletelymystifiedbythe lackofdevelopmentoftheAntigentestsand microscopy,particularlydarkfieldmicroscopyandthe newfloatingfocusmethods. Antibodiesarevariablefromstraintostrain,from persontopersonandfrommonthtomonth;whereas thepresenceofthebacteriathemselvesissurelya bettermarkerofinfection.SpirochetesandLforms havebeeneasilyseeninthebloodofpeoplesuchas myself,after19yearsofpreviouslyundiagnosed borreliosis. Inthefaceofagrowingpandemic,Iwouldaskthat microbiologistsworktogetherwithphysiciansina massivecombinedefforttohealusandtopreventthis

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ValerieCallenBadilloIwouldliketoseeoneofmy miseryforfuturegenerations.Donotleaveitto bestfriendsgetherlifeback!!!Tobeabletowalkagain, commercialventures,butactnowasguardiansofyour country'shealth,andprovideleadershiptoallother toholdherson,tokissherhusband,tobeabletolive. nations,astheUSAdidinsomanywaysinthepast. TherearesolutionsthepeoplewithLymearenottest rats.Givethemthehelptheyneed.STOPTURNING HeatherLeaHydeIagreeweneedtohavemore THEMAWAY!!!!Haveaheartandrealizetheseare peopleinpaineveryday!!!!Constantpain.LYMEisreal, recognitiononLymedisease. Pleasehelpthemfightit!!! LindaRademakersAfterbeingtoldformanyyearsit RobertDeLongPleaserewriteyourLymeguidelinesand wasFibromyalgia,hormonesandmemakingmyself incorporateallscientificresearchandunknownsand sickthankGodforDrCameronandhisstaff.Ireally uncertainty.Pleaseopenyourmindsandheartswhile dontknowwhereIwouldberightnowifnotforhim. youdoit.It'stime.Andthereisnobettertimethan WhycantchronicLymeberecognizedandtreated.To nowto. thinkthatIcouldhavebeenwellyearsago,whata criminalact.Wakeupandseethosewhoaresuffering! NeilHueyItriedtoconnectAndreabutcouldn't. SallySalerspitzStopturningusaway.Weneedyour help!CometogetherwithALLOTHERorganizationswho KeilihMarkGatesIwouldliketoseethesameamount reallytakeLymediseaseseriously...makecollateral ofeffortthatiscurrentlygoingintothecoverupand contactsandfindananswer...asolutiontoour denialofchronicLymediseasegoingintothetreatment problem...notanexcuse!Weareallonthesameside...I anddiagnosisofLymediseaseandrelatedcoinfections. hope. KellyEdmondsLymediseasecanquicklytakeoverone's JackieChubaNeeleyIwouldliketoseechangeinthe life.IwouldliketoseetheIDSAworkwithILADSand protocolforLymedisease. Lymeliteratedoctorsin NeilHueyCoincidentallymany"newer" Moreresearchoracure! developingnewdiagnosticand socalleddiseasestateswerebeingborn treatmentstandardsforLyme SusanEastonmoredrswith oratleastincreasinglydiagnosed;i.e., disease.Lymeliteratedoctors knowledgetotreatthis needtobeabletopractice chronicfatigue,fibromyalgia,physco disease.Researchfora withoutfearoflosingtheir somatic disorders, motor neuron license.Thereishope,buttoo cure.Easierwaysfor manypeoplearesuffering patientstogethelp.OneDr disease...allatthesametimetickborne mysontookhis2yearold diseasewasdramaticallyincreasingwith needlesslyunderthecurrent sontosaidheshouldtake frequency.JustlookbackatCDCstatistics standards. himtoa over the past ten years to correlate. MichelleRifferBaltimore, psychologist...wrong MarylandWeneedhelp.I answer. don'tcareforanapologyor admissionofguilt,Ineedto PhilipGrazulis knowthatyou'readvocating,changingguidelinesand acknowledgechronicLymes.nothingisthesame educatingontheseriousnessofchronictickborne withoutyourhealth,helpusgetoursback diseasesandhowtoeffectivelytreat.Iwantyoutoread eachwordoftheseresponsesandhearthestories,to ConnieMcMartinRevision(overhaul)ofthecurrent seethepoweryouhaveinreevaluatingand Lymediseaseguidelinesallowingdoctorstoactually HELPus!Andwithoutrisktotheirlivelihoods. appropriatelyrevisingcurrentprotocol. AndreaMcLainFennell IwasinfectedwithLyme,Erlichia,Babesiaand https://www.facebook.com/photo.php?v=&fb_source= Bartonellaandexperiencedvariousintermittentmulti messagePleaseseetheattachedclip,shortandtothe systemicissues(primarilyneurologicalandGI)forayear point.TakenfromanInterviewwithgoodfriendsand beforeIwastestedforLyme(+),andtreatedwitha21 daycourseoforalDoxy.Atfirst,mysymptoms advocatesJoyandAlanBurdge. improvedandIthoughtthatwasthat.I'dneverheardof

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chronicLyme(orknownaboutthepossibilityofco infections)andwhenissuesreappearedandnewissues aroseitneveroccurredtomethatitcouldbetheLyme, becauseI'dbeentreated. It'sasifyou'dbeentreatedforstrepthroat,ifyougeta tickleinyourthroatorafever3monthslater,it wouldn'toccurtoyouitwasthestrep,you'dbeen TREATEDformonthsearlier.After5yearsofoffandon issues,over25specialists,theremovalofmyappendix andthenmygallbladderayearlater(attheageof22) andmyweightdroppingtounder100pounds,my motherfinallystartedresearchingontheInternetas shewaswatchingmeslowlydie.Imagineourdisbelief andfrustrationtoseeliterallythousandsofpageson chronicLymediseaseandthecontroversysurrounding theproperdiagnosisandtreatment.Aftermuch searchingIfinallyfoundaLLMDwhoconfirmedthe Lyme,andinadditionfoundthatIhad3coinfections. Overthepast5yearsI'vepaidtensofthousandsof dollarstogetthebesttreatmentIcanafford;money thatI'dratherhaveinmydaughters'collegefunds.I don'tdothisbecauseI'mcrazy,forattentionorany otherreasonotherthanIwantasclosetoahealthy existenceaspossible.Ittearsmeapartthattoholdmy daughtershurtsbecauseofmyneurologicalskin sensations,andthatifIdidn'thavevideoIwouldn't remembermuchofthepreciousmomentsthatpassso quicklywhenthey'rebabies,becauseofmybrainfog. Mostpeopledon'tknowtheextentofmyillness becauseIdon'tgetintoit,evenwithmostdrs,since accordingtocurrentstandardsIhavesomethingthat "doesn'texist".After10yearsofthis,Idon'twant apologies,IwanttomoveforwardIwanthelp.Plain andsimple. KellyPattonNanneycommentssaysitall!!!!! AshleyReaIwouldliketoseetherecognitionofLymes disease!Iwanttoseethemnotturnawaypatients!I wantthemtodoresearchonLymesdiseaseandhelp findacureforit!!!! PamelaRobertsonFolkslet'ssticktogetheronthis therearetomanyofuslet'sstanduptothecorruption. Iamdownforwhatever.IDSAansweruswhycan'twe gettreatment???????Lordhearourprayersmake someonelistentous. LisaClaiborneWilliamsPleasedon'tkeepignoring thoseofuswhosufferwithLymeDisease.Lyme

BacteriaisREALandIhavesufferedwiththishorriffic illnessover7years,mytestresultswereverifiedby POSITIVEbloodworkandclinicaldiagnosesthatI indeedhaveBorriella,BabeosisandBartonella Spirocheteslivinginsidemybody.Itisagrueling dieseaseanditisreal.ChronicLymeexsistsevenofyou don'twanttoadmitit,andreportingpeoplewhosay thisas"Harrassing"youonFBwillNOTmakeLymego away.I'MBEGGINGYOUTOHELPPEOPLELIKEME!! StephanieVandagriffLindaforyourdoctors protection,wedon'tpostdoctorsnames.Justreferto themasLLMD. TiffanyMorganIagreewithmanyifnotallofthese comments!ToKaetheMitchellabove,thebadthingis thatphysiciansaresuppossedtodiagnosebasedon clinicalsymptoms,nottheunreliabletesting,thatmay occasionallydetectLyme.Evenifso,hereinGeorgia, with2positivesandonetestrecommendingtestingin2 weeksinwhichthedoctorfromEmoryneverbothered tocallb/chesaidtherewasn'tanyLymediseaseinGA, andthatthe2previoustestwerefalsepositives???So nowonderitisunderreportedandundertreated!I haveseenapprox.100doctors,andfinallygotalead fromanbrainMRIreportthatindicatedLymeasbeinga possibilityfortwospotsonmybrain.Ireadinfo.and knewthatwasit,thenhadtestingthatprovedso.I thoughtIhadtheanswerandcouldstartgettting better,butihavebeentoldbyseveraldoctorsthey wouldhelpanddidnotandthattheydon'tknowmuch aboutitnordidtheylookintoit!Iguessmylifeisnot importantenoughtothem.I'msuretheywouldthink differentifitweretheirfamily!Iplanontravelingto WashingtonD.C.andpayingoutofpocketb/cIhaven't beenabletofindanyonetohelpme!Whatashame! Thereisnotellinghowmanypeoplehavethisdisease andarenotawareb/cphysiciansarenoteducated aboutit!Veryclosedminded!Peopleshouldnothave tosufferneedlessly. Pleasehelpinbringinglighttothishorribledebilitating disease!Forthosewhodon'tbelievechonicLymeisreal orcouldpossiblebeinGApleasebemyguestandtake thetimetoreadtheresearch@http://columbia Lyme.org/research/cr_research.html MarissaBellaCassellaIgnoranceDoesn'tSolve Anything ReneeDavisLambornHonesty,perseveranceand integrity....manymedicalprofessionalsareinthe"world

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isflatsyndrome"whenmetwithdiagnosticchallenges. MentalHealthshouldneverbethe"dumpingground" forfailurestoproperlyandaccuratelydiagnosea patient.ManyillnessesarenotinaDM.....thinking outsideoftheboxiscritical. DebbieBossinBaileyIwouldlovetoseeLymedisease anditstreatmentbegiventheattentionitdeserves.I wanttoseemychild,neverseriouslysickadayinher life,begivenhervibrantlifeback,andnotbebankrupt becauseofthecostoftreatment,diagnosis,andgreat numbersofvisitstodoctorsofallgenres.Iwantherto beabletouseherhealthinsurancebenefitstohelp makeherwell.HerdevastatingdiagnosisofLyme tricklesdowntothedetrimentofherfamily,which includesthreeveryyoungchildren.Iwantthemtoget theirmomback.Iwantmypreciousdaughterback,and herhusbandwantshisbeautifulwifeback. Unfortuntely,itseemsthatgreed,pureandsimple,is sometimestheunderlyingforcebehindthesedownfalls inproperandappropriatemedicalcare."Firstdono harm"butunfortunately,lotsofharmhasalreadybeen done.Openyourmindsandpossiblyyourhearts,and bringthistotheforefront. TimGallagherComeupwitheffectiveandaccurate treatmentguidelinesforLymeDisease. AnneJarrellLoCasaleIDSA<pleaseapplytheresources andthegreatmindsofsciencetowardsbettertesting andtreatmentsforLyme.Thenumberofpeoplewho havebeenharmedbythis,andmisdiagnosedforyears, isunconscionable.EverydoctorIknowwhohasafamily memberstrickenwiththisdiseasebecomesabeliever inhowrealandprevalentitis.Asthedaughterofa physician,THATismybiggestproof.Mydaughterhad beenmisdiagnosedforyears,bysomeofthebrightest specialistsinthecountry.Thesedoctorsneedgreater awarenessandbettertestingchoicesthatinclude coinfections.Mydaughterisnowunabletoattend school,hasdroppedallsportsandmanyotheractivities, andhastroublereadingformorethan15atatime.She isinconstantpain.Sheisatalented,giftedstudentwho haslost3years(andcounting)tothisdisease.Sheis only16andwouldliketobeadoctorsomeday.We needallofthemindsofsciencetoworkTOGETHERon thisandstoptheneedlessdebate.Iamsureyouwould agreeifitwereyourchild.Thankyou. JulieRandIwanttoseeIDSAuseandrecommendthe ILADSguidelinesfordiagnosingandtreatingtickborne

diseasessothatmoredoctorswilllearnhowto recognizeandtreatthem. NeilHueyAskyourPCPshowmanyhoursoftraining theyreceivedinmedicalschool.Theanswersyou receivewillamazeyou.Whatwillittakeformedical schoolstoincorporatesignificanttickbornedisease trainingonallavailablescientificbodyofevidence includingthatofILADS.Recentlyastategovernorhas headedupaLymeprogram/inquiryas5ofhis7kids andwifehaveLymedisease.Hmmm... PaulPatchIwouldlikeoursocietytosimplyshow compassion,andkindnesstoeachother. BobbyjoeHollidayCouldanyoneofyouthinkabout havingaparasiteinsideyourbody&yourFamily's&the Medicalsystemwillnothelp.MorgellonsDisease https://www.facebook.com/groups//. MorgellonsGroupinformationpagetoconnectpeople withMorglleonsDisease,&findresourcestogethelp& information LisaClaiborneWilliamsSayingLymedoesnotexsistis likesaying"TheWorldisFlatandyouwillsailaccross theedgeandfalloff".Ittookjustahandfulofpeopleto trekavoyageofdiscoverytoindeeddiscoverthatthe worldisNOTflat.Thepersonwhoinitiallydiscovered thattheworldwasnotflat(Magellan,notColumbus) wastoldnottospreadthatnewsbecausetheywere afraidofwidespreadpanic.Canyouimagine?Let'sjust leteveryonebelievethatiftheyventurefarenought theywillfalloftheedgeoftheearth.Iswhatyouare doinganydifferent? AmyLackeyRicciutiIDSAItistimetostartlisteningand makingaplantoworkwiththeLymecommunity.We outnumberyouandwewillbeheardandmakethe changesnecessarytogetourtreatmentandget coverageforsaidtreatment.Itisjustamatteroftime. YoucannothideunderarockFOREVER!!Reviseyour guidelinesforREALITY!ChronicLymediseaseexistsand isepidemic. BobbyjoeHollidaySufferinginsilenceshouldnotbean option!! LisaSikesIwouldtoseeaggressiveresearchinthearea ofchronicandpersistentLymedisease,it'streatment andcure.Iwouldlikeagenuinecommunicationto occurbetweenIDSAandILADS.Iaskthatthenew

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guidelinesbekeptopenuntilwereallyknowwhatis goingon.AndthatIDSAguidelinesbeinformedby thoseparticipatinginILADS,aswellastheinformation frompatientslikeus.Iwouldliketobeabletoaccess allopathicandalternativetreatments.Iwouldliketo seefundingforactualintensivetreatmentforpatients whohavebeensufferingwiththisforyears,suchas myself.Iwouldlikealltreatmentstobeconsidered, becauseantibioticshavebeenatreatment,butnota cure.IamcurrentlydisabledduetoChronicLyme disease,andIwouldlikemylifeback! JosieBradleyDr'sneedtobeeducatedandweneedto beheard. TessaMccallIwouldliketheIDSAtoadmitthereisa problemherewiththepeoplewhoaresufferingfrom ChronicLymeDisease.Therearetoomanypeople sufferingfromthechronicformofthisdisease.Iamto tellyouthatfeelinglikeyouhavetheflu(magnifiedby 20)onagainoffagainisNOTNORMALACHESAND PAINS.Thestudiesaretherethebacteriaisstealth andcapableofchangingitsformtohidefromthe immunesystemandtheantibiotics.Lookatthestudies doneatBerkleyon"Antibioticscanimprovethedisease butdon'tentirelykillthespirochetesthatcauseit," Appelsays."Somepersistandsixmonthsorsolater, playupagain,causingrecurrentsymptoms.Thisholds truefordogsandislikelythecasealsoforhumans." Nevertheless,withthecombinedarsenalofavaccine andantibiotictreatments,itwon'tbelongbeforeLyme diseaseisundercontrol. KendraCuylerIDSAmemberswhoareonthepayrollof drugcompaniesshouldnotbeallowedtodraft treatmentguidelines! JenBruningHafnerIwouldlikeaffordablecomponent comprehensivehealthcare,withnotusingfearto controllthemassesandmanipulatethemintovaccines andpillsthatareuselessandrisky.Thetruthnomore secreteliterunningthelivesofAmericansandall peoplenomatterskincreedracereligionsexual orientationnationilalityorage.Firstoftwocontinued onnextcommentnomorelies!!!!!Nomorefalse informationtomakethepharmaceuticalandwallstreet fatterandmorecorrupt. ErinLaSpadaIalsowouldlikemylifeback,thelifeIhad atworkingfulltimewiththeworldinfrontofme.That wasmylifebeforebeingstrickenwithlatestage neurologicLymedisease.Icldntdriveforayear

beacauseicouldntrememberhowtogetfromplaceto place,inatownihadlivedinallmylife.Ialsohadtimes icouldntevenspeak.Becauseofthislatediagnosis,I amonpermanentdisability,cannothavechildren,and cannotwork,asioncedid.Ihavefoundpositivethings inmylifetolookatthroughitall.Ifoundreasonsto presson.Pleasefindbettertesting,accuratetestingand bettertreatment.Wearepeoplethatdidntaskforthis. AIDSpatientsgetbettertreatment.andthisisspreading fasterthanAIDS.Bottomline,wejustwanttobe treatedashumanbeings.andmoreaccuratetesting andtreatment.Thankyou. HelenVilliersshortandsweet.........CURENOT KILL...............thetruthwillcomeout... RoseFoxJohnsonSo,heresyourchance,IDSA.Patients arecomingtoyourFacebookpageandsharingviews thatyouinvitedthemtopost.Mostofthemarekeeping theirlanguageclean.Willyoupayanyattentionatallto whattheysay?Willyoulistenforthepainbehindtheir words? HowaboutareviseoftheIDSAguidelines,inanopen processthatallowsallstakeholdersaplaceinthe discussion? ImwillingtohopetheNewYearwillbringsome softeningtoyourantiLymepatientstance. JenBruningHafnerRecognizeLymedies MonicaZmudaRecognizechronicLymedisease,Ihave Lymeandcoinfections.TheneurologicalproblemsI haveareendless!Walking,speech,memory, neurologicaltics,confusion.Pleasehelpus,Idonot thinkitistoomuchtoaskfor,wewantourhealthback. Wewanttobeproductivemembersofsociety.People ofallagesaresuffering,why???Ijustcannot understandamedicalestablishmentrefusingcare, treatment,ordiagnosis.Ihadbeenanurseforover15 years,nowIcannotworkduetothisdisease.Constant pain!Mysterydiagnosis,theanswerischronicLyme disease. TessaMccallFacebooktookmymessagebeforeIwas finished.ThestudywasatCornellnotBerkley.Thisis exactlywhathappenstomeupanddownrollercoast ridethatIhavebeenonfor3yearsandIreallywantoff thisride.IcannotmakeplansbecauseIneverknow howIamgoingtofeel.Pleasestopthisinsanityforthe peoplesuffering.Wearenotaskingyoutofindacure

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althoughthatwouldbenice!Weareaskingyoustop anyoneelsefrombeinginfected.Usedbypermissionof theCornellVeterinaryMedicinenewsletter.Fall1997. "FacultyProfileonMaxJ.Appel".pp.11and13.This articleappearedwhenDr.AppelbecameProfessor EmeritusandwasatributetohislongcareeratCornell. NeilHueyCoincidentallymany"newer"socalled diseasestateswerebeingbornoratleastincreasingly diagnosed;i.e.,chronicfatigue,fibromyalgia,physco somaticdisorders,motorneurondisease...allatthe sametimetickbornediseasewasdramatically increasingwithfrequency.JustlookbackatCDC statisticsoverthepasttenyearstocorrelate. KristenWilsonRossPleasestandbyLymepatients...It's REAL!!! TeriKjosIdonothaveLymedisease,butmycousin does,andIhavewitnessedthesufferingshehasbeen goingthroughfor"fartoomany"years.Thisdiseasehas ruinedherlife.Ineedtoknowwhyitisthat veterinariansrecognizethediseaseanditistreated immediatelyassuch&cured.Mydaughter'sdogwas treatedandcuredofLymediseaseapproximately3 yearsago.Also,Ibelievethereisavaccinationfor animalsforLymedisease.Isn'tittimetofindacurefor thethousandsofpeoplesuffering.Obviouslythisisn't goingtogoaway.It'stimethatthesepeopleare heard!!!! LindaHopkinsHickmanPARTONE First,Iapologizeforanyrudecommentsmadebythose frustratedwithyourorganization.Pleaserecognize thesecommentscomeoutofthefactthatyour organizationsstanceontreatmentprotocolshave greatlyimpactedtheirlivesbothmedicallyand financially.Oftentimes,leadingtodisablingconditions, bankruptcyduetotheinabilitytogetinsurancetopay forthetreatmentthatfinallykilledtheirLymeDisease (mosttypicallyIVantibioticsaftermanyrounds,doses andtypesoforalantibiotics,alsomanynotcoveredby insurance),orboth.Pleaseunderstandtheircomments arefrombothphysicalandpsychologicalpainandthat theStandardsofCareyourorganizationhasforLyme Diseasehavegreatlyimpactedtheirlivesinnegative waysandtheydonothavethewordsorstrengthtodo anythingotherthanlashoutaftertheirlongbattles withLymeDiseasetheultimately,formostofthem, theyhavelostthelivestheyhadpriortotheirexposure toLymeDisease.So,pleasetrytounderstandthepain

behindthewordsanddonotjustdismissthemas crazyornutjobs. Iamwritinginhopesofactuallyencouragingfurther real,educatedconversationandchangestothewayyou lookatLymeDiseaseandmostimportantlyreevaluate thecurrentStandardofCareyourorganizationhasfor LymeDisease.Whileitdoesworkformost,itdoesnot takeintoaccountthosewhohaveatypicalresponsesto LymeDiseaseand/orthosewhodonotrespondtooral antibioticsnomatterhowhighthedose,nomatter howlongtheantibioticsaretaken(despiteallthelovely sideeffectsoftheantibiotics),nomatterhowmany differentantibioticsaretried,SomeofusdoNEEDtobe onIVantibioticstofinallykilltheLDgermsandyour StandardsofCaremakethatverydifficultforthe physiciansinvolvedinourcareandourabilitytoreceive appropriatetreatment,letalonegetthisappropriate treatmentpaidforbyinsurancecompanies. Thankfully,forme,myPublicHealthDeptbecame involvedinmycareasmycontinuouslyhighlypositive testswerereportabletothem.Forme,ittook4rounds of4weeksofIVantibioticstofinallygetanegativetest. Although4antibodieswerestillpositive,itwasbelow the5positiveantibodiesneededtobereportableto PublicHealthDept.Ittookabout6monthstogetthe4 roundsof4weeksofIVantibioticssinceIneededto waitfortestresultstocomebackbetweenroundsofIV antibiotics.Eachtimethetestcamebackpositive,the HealthDeptrecommendedthenext4weekroundofIV antibiotics.Afterthe4thround,whenthetestcame backwithonly4positiveantibodies(officiallynegative accordingtoteststandards?),itwasrecommendedthat Igobackonoralantibioticsfor30days.Ididthis;and thenexttesttaken6weeksaftercompletingthelast oralroundofantibioticsstillcamebackw/somelow antibodylevels.Theantibodylevelshaddeclined further,andasthesideeffectsoftheantibioticswere severeforme,andIwasfeelinglesssymptomsofthe LymeDiseasefinallyaftertreatmentfor2plusyears. Wechosetowaitandseeifthelevelswouldcontinue todeclinebasedonlongtermtreatmentandtestina fewmonthsunlesssymptomsincreased.Thankfully, thattestwasafewmonthsagoandforthefirsttimein 10yearsmyIgMantibodieswerenegative!However, wewillcontinuetomonitortheLDpathogensasmy physicianiswellawarethatthespirocheteshaped germscanstillbehidinginmybrainorotherorgansand reactivatethediseaseatanytime.

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3)InclusionofIVantibioticsastreatmentmodeONLY Second,Iapologizeinadvanceforanygrammaticalor forthosewhodonotrespondtooralantibioticsaftera spellingerrorsinmypost.Theydonotreflectmy specifictimeperiodandaspecificcocktailoforal educationalstatus.InfactwhenIfirstbecameillinJan antibiotics,increaseddosesoforalantibioticsrather 2001,IwasworkingfulltimeforaLocalDeptofHealth thanablanketstatementthatoralantibioticsarenot intheareofpolicyandprogramevaluation.Infact,I thestandardofcare.Therearepatientswhodonot wasattendingJHUSchoolofPublicHealthworking respondtooralantibioticsmaybethediseasewas towardmyMastersinPublicHealth,withaPolicyand diagnosedtoolate,maybetheyhaveotherdiseases Administrationfocus. thatcausetreatmenttobemoredifficult,forwhatever reason,therearepatientswhodonotrespondtooral WhatdoIwantforyourorganizationin2012? antibioticsanddoinfactneedIVantibioticstofinally killthedisease.Manyotherdiseaseshaveatreatment 1)AbettertestforLymeDisease.Also,atestthatdoes modelthatprovidesfirststepintreatment,ifthatfails notdoabasicscreenandthennotmovetospecific movetothisstep,thenthisstepandfinally,tothestep antibodiestestingifscreeningisnothighenough.A ofIvantibiotics.YourcurrentstanceonIVantibioticsfor morescientificallyreadtestisneeded.Testresults LymeDiseaseiscausingundobrainandotherorgan shouldnotbedependentupontheskilloflab damagetoindividualswhoneedIVlevelantibiotics.Itis technician. alsotyingthehandsofspecialists[eventhoseoutsideof InfectiousDiseasespecialists]whofearmalpracticeor Additionally,ifyoutestpositivefor2ofthegerms statemedicalboardsanctions.Byspecificallyidentifying identifiedaspartofLymeDisease,thisshouldbe whenIVantibioticsshouldbeused,inthoserarecases, enoughtobetreated.Evenoneshouldbeenough.You shouldnothavetohave5differentantibodyreactions isamuchbetterpolicythanexcludingatreatment toofficiallytestpositiveforLymeDisease.The optionthathasproventoworkforthosewhoarenot differencesamongindividualsimmunesystemspriorto abletokilltheirLDinotherways. exposureresultinavarietyofresponsestoinfection withanyoftheLymegerms. 4)Aneducationalcampaigndirectedatlikeaudiences: A)Physicians,bothprimarycareandotherspecialists 2)AStandardofCarethatcallsfortestingofallknown whoendupseeingLDpatientslateinthediseaseasa tickbornediseasesifsomeonetestspositiveforLyme resultofneurological,rheumatological,psychiatricand Disease.Itisfactthatticks otherlatestageLD Jennifer Tate Citizens of this country are withLymeDiseasepathogens symptoms.Thisshould arelikelytohaveother includeallearlyandlate dying,becomingdisabledandlosing diseasepathogensandmany stagesymptomsofLDtoput everythingbecauseofLymeDisease. individualstreatedforLyme itontheradartoeven Thousandsandthousandsofpeoplehave considerLDasanoption. Diseasedogetappropriate thesamestory,samesymptomsadsame [NIHmadethis careandtheLDiskilled,but recommendationforCeliac theyhaveothersymptoms poorqualityoflife.Wewanttowork, Diseaseseveralyearsagoand still.WhileIdoagreethere love our families and be contributing thenumberofcasesof aresomewhohavelongterm membersofsocietynotbedboundand appropriatelydiagnosed damagefromLDandhave caseshadjumpedsincethe PostLDSyndrome,others scared.Weneedtobetakenseriously programbegan,sourceNIH arelikelytobeinfectedby andmoreneedstobedone.Recignizing consensusconferenceon othertickbornediseasesbut CeliacDisease] manyPrimaryCarePhysicians thatChronicLymeexistsandchanging thetreatmentguidelineswouldsaveso donotknowtotestforother B)PublicHealthEducation possibleillnessesandthey manylivesandimprovethosewho remainuntreatedandareleft Programthateducateson managetostillbehereaftersuffering tocausefurtherdamageto otherearlysymptomsofLD yearsofagony! theirpatients. andthefactthata statisticallysignificant numberofindividuals LindaHopkinsHickman w/LymeDiseaseneverhavetypicalbullseyerash,or POSTTWO

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havetherashinanareathatitcannotbeseenlikethe scalp.MostAmericansthinkthatLymeDiseaseisarare diseaseandyoualwaysgettheclassicbullseyerash. Theyalsothinkthatyouneedtobeacamperorhikerto beexposed.Theyforgetthatthosedeerwhoeattheir landscapingplantscarrytheseticksandcaneasilyleave behindandpasstoyouoryoupet,thenyou.Weare encroachingmoreandmoreonthenaturalhabitatof deerandourhomesarebeingbuiltintheirhomes. Muchofthegeneralpublicdoesnotseethisasa connectiontoLymeDisease.IncludedinanyGeneral PublicHealthEdCampshouldbetheincreasein incidenceofLymeDiseaseandothertickborne diseases.Useofmapsshowingincreasesinincidence andspreadofdiseasewouldbeaveryeffectivetoolin suchacampaign.Itshouldalsotouchuponthefactthe LymeDiseaseisacollectionofpathogensandnotjust onegerm,thedifficultiescurrentlyfacedwithcurrent testingandtheneedtogetretestedifsymptoms continueafteranegativetestasittakestimefor antibodiestobuildtothelevelofdetectionbycurrent testsandtheneedforretestingaftertreatmentto ensurediseasewaskilled. 5)Iwouldliketoseemorelongtermresearchonthe incidenceofreactivationofLymeDiseaseduetothe spirochetethathidduringtreatmentandcomeout againlaterduetowhateverreason.Theresearchshould includetrackingpossibletriggersforreactivationof disease.Weknowagreatdealaboutthelongterm affectsthespirocheteshapedsyphilis.Iwouldliketo seeresearchthatusesthatinformationandcompares andcontrastsittowhatiscurrentlyknownaboutthe spirocheteshapedLymerelatedpathogens. 6)Iwouldliketoseeavoluntarydatabasecreatedtobe usedasalongtermresearchwatchforthosewho havesignificantlongtermdamageduetowhatever reason[latediagnosis,notkilledwhenfirstdiagnosed andtreatedandnotretesteduntilyearslater,co occurringchronicillnessthatcausemoresignificant diseasethanhealthierindividuals,etc.].Thisdatabase couldnotprovideempiricalresearchinformation,butit couldbeusedtohelpLymeDiseaseresearchersbe inspiredtobeginresearchintoareasnotcurrentlyon theradar.Itcouldalsoprovidearetrospective,although againnotforpureempiricalbasedresearch,lookat commonpredisposingfactorscontributedtopoor responsetotypicaltreatmentrecommendations.Ora retrospectivelookatwhattreatmentswereused,how longafterexposuretoticktreatmentsbegan,oran infinitenumberofcombinationsofcomponents

researcherscaretocompareforthosewhorespondto LymeDiseasepathogenexposureinanatypicalmanner. Then,ifthereareanypatternsnoticed,itcouldleadto newresearchpathstotesthypotheses. 7)WhileIunderstandthatmostresearchisbasedon typicalexposureandtreatmentandmonetarilythatis thepriority.Iamalsokeenlyawareresearchfundsare alsohardtocomeby.Butifyouhadthevoluntary databasedescribedabove,youwouldhavesome evidenceofthelargenumbersofindividualswhoare permanentlydisabledbyLymeDisease.Additionally, youcouldrequestthenumberofindividualsapproved forSSDIapplications(byyeartoshowincreasing numbers)thatlistLymeDiseaseas: A)theonlydisablingdisease B)oneoftwoormoredisablingdiseasesand C)theageofapplicant.Thisdatacouldthenbeusedto showCongressthedirectcostsLymeDiseaseincursin justSSDIcosts.Goodstatisticians/researcherscanuse thatdataandprojectadditionalgovtcostsfor Medicarefortheseindividualsoncethemeetthe2yr waitingperiod,thecostsforMedical Assistance/Medicaidforindividualswaitingforaccessto Medicareandalargeproportionevenafterobtaining Medicare. Additionally,manyoftheseindividualscostthegovtin FoodStampsbenefits,EnergyAssistancebenefits, HousingAssistance,GovtFoodAssistanceviaLocal GovtFoodBanks,etc.Oncethesecostsareprojected,it willshowthehugecostthatthesmallpopulationof LymeDiseasesuffererswhoendupdisabledbythe diseasecostthegovernmentandthefactthatthese numbershavebeenincreasingovertimewillgiveyour organizationtheleveragetotrytoobtaingovtfunding forthispopulation.Additionally,thisdataand knowledgewillhelptogainprivatefoundationfunding aswellasgeneralindividualdonationstohavethe abilitytofundresearchforthisareaofstudy. MichelleBrownIwouldliketheIDSAtostartlistening toprivateresearchscientistsandthecurrentdoctors treatingLyme.Surelythosethatseeitdayanddayout havesomeinformationtocontribute.Iwouldalsolike avoice.Listentous,wearesuffering! JenBruningHafnerRecognizeLymediseaseisnot cureableinthreemonthsifeverandhavethehardreal truthbesaidaboutitbecausemydearfriendandloving mother,wife,daughterandinspirationjuliannaking liveswithLymediseaseandwhatthehealthcommunity

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doesandLIESaboutitstreatmentsandinsurancedon't insuranceoveritisinAmericanandinhuman.This "organization"disgustsmeandtherestoftheworld thatdoesnothaveyourwoolpulledoverthirtyeyes. Changethelawsandbringhopebacktorealpeople fightingLymedisease.Jewelskingandhersondeserve afightingchance,dotherightthingnotthemostprofit margin.Saveyoursoulsbeforeitstolate!AndI'm agnosticsohelpthegoodpeoplewhowillliveordie becauseofyourpoorlawsandLIES.Sincerely,Jennifer Brining SallySalerspitzWearevictimsofLymediseasee..and continuetogetrevictimizedfromdoctorswhoare forcedtoabidebytheISDALymetreatment "standards" SubLymeContenderwow....over!!!! ElaineCalderinAcknowledgeallofuswithchronicLyme wewillnotgoaway! ReneeSchultzWewanttogetwellandgetourlife back.ThelifethatchronicLymehastakenfromus.I wanttobeabletoaffordmytreatmentandnothaveto travel4hourstoseeadoctorthatknowshowtotreat Lyme. BobbyjoeHollidayManywithmorgellonsDiseasealso haveLymeDisease. PatsySwinsonWelatestageLymediseasepatients desperatelyneedrecognitionandhelp.Thestandards ofdiagnosisandtreatmentneedupdatingtoinclude ourgrowingnumbers.Ihavehaditforover55years andbeenonantibioticsanumberoftimesbutstill testingpositive.Ittook50yearsjusttogetadiagnosis. That'sabout50yearstoolong.Can'tthisterribleand growingproblembeaddressed? CathyReillyConsidertheGoldenRule... BrandonLawesIgnoranceDoesn'tSolveAnything ToddMeeseIDSA:over1,000comments.Doyouget theideayet?Wearenotgoingtobesilentanymore. JenniferTateCitizensofthiscountryaredying, becomingdisabledandlosingeverythingbecauseof LymeDisease.Thousandsandthousandsofpeoplehave thesamestory,samesymptomsadsamepoorquality oflife.Wewanttowork,loveourfamiliesandbe

contributingmembersofsocietynotbedboundand scared.Weneedtobetakenseriouslyandmoreneeds tobedone.RecignizingthatChronicLymeexistsand changingthetreatmentguidelineswouldsavesomany livesandimprovethosewhomanagetostillbehere aftersufferingyearsofagony! JacqiEulerBTW...Ihavebeendiagnosedwithfibro, chronicfatigue,sleepapnea,TMJ,heartpalpitations, chronickidneystones,arthritisandahostofother problems.AllofwhichmyLLMDbelievescouldhave beenavoidedifIwouldhavebeentreatedproperly whenIwasfirstbitwhenIwas6.Butsincewelivein Indiananooneknewaboutit.Youseewewereon vacationinLymeCTwhenIgotbit!Sojustbecauseit "isn'tinIndiana"(thoughitis)doesn'tmeansomeone thatlivesherecan'thaveit.PeopleDOtravel... SarahSolomonPleasedosomethingaboutchronic Lymediseasenow!!Toomanypeoplearesufferingfor thisnottobethetopof"oursociety's"agenda. AngelaKayeMasonWewanthelp,respect,orevenjust acknowledgementforthoseofuswhosufferwith chronicLymedisease. MaryShafferTickborneillnessesareaComingPlague! LYMEisreal!Stopignoringtheproblem....Greatposts everybody! MichelleRifferThatyoudon'taskaquestionandthen disregardiftheanswersweren'twhatyouwantedto hear.Thatyouacknowledgeanddosomethingsothis wasn'tjustanexcerciseforLymesuffererstovent. EmilyMygattLeeHowaboutacknowledgmentofthe endlesssufferingofmanythousandsifnotmillionsof AmericanssufferingfromchronicLymedisease,sothey canfinallygetthehelptheysodesperatelyneed?That wouldbegreat(ifoverdue.) FrancesMurdaughKuhlbarsWeneedafairandhonest reviewoftheIDSAGuidelinesbyphysicianswhoare actuallytreatingLymepatientsandresearchersworking tofindanswers.Areviewandnewguidelinesthat wouldnotgiveinsurancecompanieslicensetodecide whogetstreatedornot.Areviewthatwouldmake insurancecompaniesrespecttreatingdoctorsdecisions ontreatmentnotjustreviewingdoctorspaidbythe insurancecompanies.Seemslikeaconflictofinterest. TherearepeoplewhohavehadLymeandhave recoveredandarelivingasproductive,taxpaying

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WesternBlot.Ihadbeensickallalong,onantibioticsfor citizensbecausetheygottheextensivetreatmentthey infectionafteranother,almostzeroCD57count, needed.ThereishopeforpeoplewithchronicLymebut primaryimmunedeficiency,yetHIVnegative,most weneedtherecognitionoftheIDSAandacooperative homebound,barelyabletogetoutofbedforthelast effortbetweentheIDSAandILADStoshareexpertise 10+years.Nearlyzeroqualityoflife.Beingmedically anddowhatisrightbyallpatientssuffering. retiredanddisabledIcan'taffordtoseeaLLMDand payoutofpocket.Ilost1/2mylifealreadytoundx'd JudyChabotIwouldliketoseeLymediseasetaken misdx'dLymediseaseandstilltheIDSAwoulddenyme moreseriously.Myson(age10)hadapositiveElisaand IVantibiotics.Becausepatents&profitandmore anegativewesternblot,soaccordingtotheCDChe importantthanindividualpatients!RightIDSA? didn'thaveLyme.Wellthiswas5yearsago,andhehas hadLymethewholetime.Nowheislegallyblindinone BeckySheltonWestPleaserecognizelatestageand eye,andhasnumerousfevers,legpains,psychological issues,etc,etc.Thisdiseaseissuppossedlytreatedin30 chronicLymedisease.It'saterrible,terribledisease... days.ThisisFALSE!!Mysonhasbeenonantibioticsfor over2yearsandstillnotcompletelywell.Thereasonhe KendraCuyler....patents&profitsAREmoreimportant isnotwellisbecausethedoctorswouldnotretesthim totheIDSAthanpatients... forLyme.WhydosomanydoctorsignoreLyme!!!!!! EspeciallywhenweliveinCT,inatickinfestedarea!! LisaHiltonAMENtowhatReneesaid,wedontwantto travelhourstogoseeadr.NottomentionCanadagoes byyourguidelines,whichleavesthemscrewedtoo! Itismaddening,whenallthedoctorsaroundhereare ignoranttothesymptomsandthetestingforLyme.Why BethGhapheryJohnsonIwouldliketoseemore doestheCDCsaythetestisnegativewhenyouhave4 educationforourdoctorssoLymeDiseasecouldbe bandsshowup?Thisisridiculous,especiallyinayoung detectedandtreatedsooner. child!IamcompletelydisgustedwithalltheInfectious dieasedoctors,pediatricansandtherapists,etc,who RayFriedmanPleaserecognizechronicLymedisease.It abidebytheseguidelines.Icanbetmylifeifanyof canhappentoanyone.HavingLymediseaseisa themhadasickchildwithLyme,theywouldchange hopelessfeelingbecausetherearesomanydoctorsout therethinkingrealfast!!!!Nevermindthefactthatthe insurancecompanieswon'tpayforthisdisease,andyou therethatcurrentlydonotunderstandit.Peopleare gobroketryingtosaveyourchildslife!! dyingwhenwithcompassion,care,earlierdiagnosisand recognition,manypeoplecouldhavebeenhelped.Itis JackieGallagherIDSAneedstoapproachtheseillnesses nottoolate.Pleasehelp!Thisdiseaseisveryreal! liketrueclinicians...andreallyfigureoutexactlywhatis goingon.Weshouldallbeonthesamesidetryingto KimberlyA.WaltersIwouldliketoknowwhatnormal, solvethisveryseriousproblem. healthypeoplefeellike.IwasbornwithLyme,have beenillmywholelife,5majorsurgeries,4formyspine, andhave12medicalspecialists.Ihaveamaster's HeatherHugoRecognizeLymesdisease,especially chronicLymes.Iknowfourpeoplewiththiscondition, degreebuthavebeenondisabilityfor16years,almost andallhavestruggledterrificallytogetadiagnosisand diedfromLyme,severalcoinfectionsandmercuryand uranuimpoisoning.Iwas treatment.Threeresponded ToddMeese IDSA:over1,000comments. physicallyextremelyill,but totreatmentforLymes,the Doyougettheideayet?Wearenot mymindwassobad,I fourthwasgiven couldn'trememberwho, inappropriatemedication goingtobesilentanymore. whereorevenwhenIwas becausethedoctorrefused anymore.Myparentshave toconsiderLymesavalid spentalmost$60,000thousanddollarstowardsthe condition,anditmorphedthediseaseintoanasty chronicaffairthatnowhashimwheelchairbound. intensetreatmentI'vereceivedthisyeartosavemylife. Pleasehelpdoctorspreventharmingtheirpatients. IhopethatyoufinallyaknowledgethatchronicLyme doesinfactEXIST!! KendraCuylerIwasonly26whenIwasbitby CheriCoussanThispolitickingwithourhealthis somethinginHouston,Texas.Itwasn'tuntil200620 ridiculous!MorestudiesonLyme,moresupport,more YEARSlaterthatItestedpositiveforLymeDiseaseby

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educationforpractitionersandpatients.Whyisthis beingkeptinthedark?!Thisis2012!It'stimetogetthis chronicdiseaseoutoftheclosetandintomainstream medicalpractices!Peoplearesuffering.Dosomething, please. MichaelDSculloneword:results TriciaPappsItisessentialthatthemedicalcommunity recognizestheexistenceofadebilitatingdiseaseknown asLYMEDISEASE!POLITICSMUSTNOTBEALLOWEDTO INFLUENCEYOU!DOCTORSTAKEANOATHTO"DONO HARM"!IGNORINGTHEPREVALENCEOFTHISILLNESS ANDDENYINGAPPROPRIATETREATMENTTO SUFFERERSISDOINGENORMOUSHARM!ITISAVERY REALEPIDEMIC! SaraSalinasIamsomewhatignorantaboutthisdisease butknowenoughtomakeacomment.Itisbeyondme whythemedicalcommunitydoesn'tstepuptothe plateaboutthisdisease.Thesufferingdescribedby Caityeisheartbreaking....thedoctorsneedtoremember theoaththeytookwhentheystartedwritingM.D. behindname!!!!! SueRosemanAseriouslookatchronicLymesdisease andit'scoinfectionsandIdomeanserioussuchas interviewingpatients! PhyllisShawThankstotheISDAguidelinesmyuncle DIEDofLymeDisease.HisTexasDeathCertificatestates fromLymeDisease.Histestwaspositivebuthis NeurologistinHoustonstatedthereisnoLymeDisease inTexas.Uponhisdeathbed,anotherDrfinally diagnosedhimwithLymebutstatedhedidnotknow howtotreatLyme.Itwastoolate! DanStapletonMoreandbetterinformationtothe medicalcommunityabouttherisks,diagnosisand treatmentofLyme.Ican'ttellyouallthehorrorstories I'veheardofvictims,notsomuchofLymeitself,but victimsofallthequackdoctorsanduninformeddoctors whofailtodiagnoseandpromptlyandadequatelytreat Lyme.Yourpolicies LeahSneedMulcayPleasedigdeeperintothetopicof LymeDisease.Thisdiseaseisdreadfulandhasgreatly affectedmylife.I'monly30yearsoldandhavespent nearly11yearsgoingtodoctorstofigureoutwhyIfeel terribleeverydayofmylife.OnceIwasfinally diagnosedonly8monthsago,Iquicklyfoundtheonly treatmenttohelpmefeelanybetterweretheIV

treatments.Noneofmydoctor'sappointmentsand noneofmyIVtreatmentshaveeverbeencoveredby insurance.Ican'tworkfulltimeduetotheLyme,and thishasbeenabigburdenfinanciallyonmeandmy husband.Somethingmustchange! Thisdiseaseisreal&it'saffectingpeopleofallages& wipingawaytheirchanceatanormal,productivelife. Manyofusaren'tabletouseourdegreestowork& moreimportantlywearen'tabletobethekindoffriend andfamilymemberwetrulywanttobe.Pleasetakethe timetolistentothoseofuswhodealwiththisdisease eachday. TerraRohnPleaserecognizethatLymediseaseisa chronicdiseasesopeoplelikemysistercanget treatmentandpossiblecuredfromthisterribledisease. Iprayyoualllistentoallthesepeoplebeggingyoutodo therightthing,tryandimaginehavingtheseparasites livinginyouandnotbeingabletogettreatment. EmmaKatePleaseupdateandeducateyourselves furtheronchronicLymeandtickborninfections.We needbettertests,andbettertreatment.Thankyou. EvaEklundOhandSweden LibbyMatthews http://www.youtube.com/watch?v=nvTLZuPpe AvaJohnson IwouldliketoseetheIDSAgenuinelyacknowledgethe existenceofandthenecessityoftreatmentoflongterm (chronic)Lymediseaseandcoinfections.Iknowif membersofyourfamilywereaffectedlikemy daughtershavebeenaffected,youwoulddefinitely haveadifferentbeliefthanyoucurrentlydo.Onceyou oramemberofyourfamilyhasbeendiagnosedwith Lyme,treatedforthe28days,andcontinuestobe symptomatic,youenterintothemedicaltwilightzone. Somanydoctorsjustwriteyouoffandaresoquickto sendyoutoacounselor,thinkingthatalittlecounseling willmakeyouwell.PeoplewithchronicLymedeserve morefromtheIDSA.TheIDSAneedstotakeaREAL unbiasedlookatthisillnessandthecurrentresearch thatsurroundsit.ThereareTOOmanypeoplesuffering andlosingtheirlivestothisillness!Itrobsmoms,dads, sons,daughters,brotherssisters,ofeverythingthey loverobsthemoftheircognitiveabilities,theirphysical abilities,theirfinances,friends,theirlives!I'mlivingit,I know

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BrendaSigelIwouldlikeyoualltotakethestudiesand crapthatcamefromYaleandtossitallinthetrashand startover.Thereisevidencebasedmedicinethattrue Lymeliteratemedicaldoctor'shavethatyouallhave beenignoringorpretendingnottoseeforyears,allfor theloveofmoney.I'vedonemyresearchandSteereis theonethatcoinedthename"fibromyalgia"after treatingpeopleforLymewith28daysofantibioticsand iftheydidn'tgetwell,he'stheonethatsaidtheyhad fibromyalgia.Makethemedicalboardsstopgoingafter thedoctor'swhoareactuallyadmittingtochronicLyme andactuallytryingtohelppatients.Thereisonegreat doctor,Iknowof,whoquitseeingpatientsandwhois researching.Youallknowhisname,socallhimupand workwithhim. ChristyKeepwouldlovetoseethemhearourpleafor help....wearesufferingouthereandneedyouto believeusandhelpusfindacure! MichelleLeeKimPLEASE,doctorsbeopenmindedand findawaytotestforandtreatchronicLymedisease!! KimberleyLangleyiwouldliketoseerealisticLyme diseaseguidelinesthatincorporateallrelevant research.Iwouldneverhaveguessedthatsomany peoplecouldbeleftsoillforsolongfromthisinfection withoutIDSAdoingsomesubstantialandongoing research.Yourcredibilityisonthinicemakeitright. KimberlyAldrupOttoViaLymeDiseaseAssociation: RegardingChildren COSTSTOSOCIETY:AstudyinanActuarialjournal estimateda$1billioncosttosocietyin1992(case numbersareup100%+sincethen).Accordingtoa1999 studyinCDCsjournal,EmergingInfectiousDiseases,an earlyresolvedLymecasecost$161,whilea disseminatedLymecasecouldcostover$61,000,in dollars.Theabovereferenced1992CDCschooldistrict estimatedmedicaltreatmentcostsfor54totalofthe studychildrenat$5.2million,andmorethanonethird offamiliesoftheaffectedchildrenhad3ormore memberswhohadatsometimebeendiagnosedwith Lyme,including40%ofthemothers.A1992school districtreportfromNJdistrictspresentedtoCDCand NIHofficialsinWashingtonDCbyaWallTownshipNJ Boardofeducationmembershowedaoneyearrisein homeinstructioncosttooneNJdistrictof88%dueto Lymediseasecases.Specialeducationcostshave certainlyincreasedduetonumbersofstudentswith

Lymedisease,improperclassifications,andignoranceof effectsofthediseaseonthestudents. CarlaNitterhouseIwouldliketoseeLymediseaseand tickborneillnessrecognizedandtreated.Itisdeadly anddestroyslives.Ihavestruggledsince2008withtick bornediseasesinmybodyandthereisnoexcusefor this.Thereneedstobemoreeducation,treatment,and acuretothishorribledisease. SherylReimersTofindacureforeveryonewhohas beendiagnosedwithLymesDisease. CherylMonahanForthesakeofoursociety.iwould liketoseeAccurateTestingforLyme&CoInfections, ProperTreatment,&toEducateourPCP's,Specialists.I haveLymeDisease&Babesiaacoinfection.Ilostmy jobbecauseofthisdisablingdisease.Ididtestpositive forLymeinJuly,hadthewholenineyards,fever,circles etc.&wassupposedtobetreatedfor4weeks,butI awokeinthemiddleofthenightwithaknifestabbing paininmyLowerLeftLeg,whichbecameswollen.This happened2weeksafterIstartedthedoxy.Ihadan UltraSoundtoOutruleaBloodclot&thedoxywas extendedfor2moreweeks(6weekstotal)Iwastold thatIcouldnotreceiveanotherdoseofDoxy. IfIwasproperlytreated&laterproperlytestedIwould nothavetostillsuffer.IthoughtIwasdyingofan unknowndiseaseaftersufferingforalmost3yrs.My sontoldmeitstartedwithLymeithastobeLyme,togo onlineandresearchLyme.Myfamilysawwhatthis Diseasewasdoingtome.Icouldbarelyreadoreven breathe.ButIdidfindaLLMDandIamnowbeing treatedwithsomeprogress.IamsoGratefulforthis doctor,IhaveHopenow&Iamfortunatetobeableto havefoundsuchadoctor.PleaseEducateourdoctors& helpsavelives. LibbyMatthewsAfter10yearsofmiserythefinalstraw waswhenmypreciousdaughtercamehomethefirst weekofhighschoolsayingherpencilfelloutofher handandshewaslosinggraspingskills.Thenextweek shewasdiagnosedwithEpilepsyafterhavingaseizure on2ndbasewhileplayingvarsitysoftball.Putyour children,grandchildrenininherposition.Wehavelost ourhousebecausethetreatmentguidelinesarenotin place.After3yearsoftreatmentmydaughtercangrasp andshehasnthadanyseizures.SheISgettingbetter. Shewasbittenat6andnowsheis18.Wehavenot traveledoutofthestateofAlabama.

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guidelines!!!!!! JaniceBahuraAcknowledgementthatnotenoughis knownaboutthisCHRONICanddebilitatingdisease. BarbBrehmRecognizethelongtermimpactsof Andanapologythatittooksolongandsomanywere ineffectivelytreatedorincorrectlydiagnosedLyme lefttofallthroughthecracks. disease.Understandthelimitationsofthecurrent diagnostictesting.Appreciatethedevastation KyleRiderIwouldliketoknow,whatmakesagroupof untreatedLymecandotoindividualsandtheirfamilies. peopleignoreaproblemthatisstaringthemstraightint Workhonestlyondiagnosingandtreatingthishellish theface?LymeDiseaseisanepidemicandisquickly diseaseandknowthatthefewpractitionerswhodo eatingawayatoursociety.JustmentionLymedisease treatthediseasedoeffectivelysavelivesandrestore toagroupoffriendsoutsideofthissmallcircleandsee dignitytothesufferers. howmanypeopleknowsomeonesufferingforthis horrendousdisease.Youractionsconcerningthis TeriKjosREMEMBERISDAMEMBERS:OurLordwill diseaseareonestepbelowtheNazisactions.WAKEUP! havethefinaljudgmentofhowyoutreated"your" brethrenhereonearth.Theafterlifeis"everlasting". AllisonHoffmannCaruanaAcorrectiononthe validationofChronicLyme,CongentialLyme,Sexually transmittedLymeandallowanceofdoctorstotreatus VikkiSalmelaAdmitthatChronicLymeDiseaseexists, asTHEYDEEMNECESSARYANDPROPER,ANDCORRECT andmanyofussufferorloseourlivesfromit.Aslong THEGUIDELINESTREATMENTYOUSUMMITEDTOALL asyoukeepignoringanddenyingtheeffectsofChronic Lyme,patientscannotgethelporinsured.Rewritethe INSURANCECOMPANIES.WEDEMANDTHERIGHTTO guidelinesandtakethepoliticsoutofourhealthcare. HAVEOURINCREDIBLEDOCTORSSAVEOURLIVES WITHOUTCHOSINGWHOINTHEFAMILYSHOULD NikkiColemanwowIDSAyouseemtohavedeleted RECIEVETREATMENTANDWHOMUSTWAITBECAUSE mypost.Iwasrespectfulandnotrudeanddidn'tswear WEAREFINANCIALLYINRUINS!Idon'tliketowatchmy (unlikesomeofyourmemberDrsthathavetreated childrensuffertheagonyofLymebecausewehavejust me).LetsseeifyouremovethispostIwouldliketo enoughcreditandloantotryandsavemylife.Which seemorescientificresearchthattakesintoaccountALL thankstomyTRUELymeliteratedoctor,Ihaveaquality sidesofthe"Lymecontroversy"andnotresearchthat oflifethatIdidn'thave21/2yearsago.$40,000dollars convenientlyignoresfactsthatdon'tfitintotheresults intravelexpensesandANTIBIOTICSmostofthe youareafter.Also,I'dlovereliabletestingforLyme strongestonesthathavesavedmylife. DiseasewhenwehavethatitwillbeMUCHeasierto diagnoseandtreat.Pleasechangethewaythatyou KevinLSmithIwouldliketoseetheultimate stakeholder"ThePatient"havedirectinputintorevising havetreatedLymepatientsuptonowitisnota theoreticalexercise,butreal rigidandstiffLymeDisease people,withrealfamiliesand Guidelinesthataresobadly GeorgeBates Pleasestoptreatinguslike livesinruin. needed. weareallcrazy.Someofushavehad Lymesymptomsforover30years.Your JohnE.MurnaneIVIwould LauraKlobucherThankGod antiquated guidelines and policies have liketoseeacountrythat IreadBurrascano's leftusoutinthecoldandmostdoctors representsits'intellgence, GuidelinesforLyme research, andresponsibilityand treatment.Myhusband cluelessaboutLyme.Wearesuffering loyaltytothehypocraticoath. haditthissummer,and anddieingyetyoufailtostillseriously ItwouldalsobeniceifIcould becauseweknewthesigns, acknowledgeus. havethelast3yearsand$25K+ gothimdiagnosed.And ofmylifeback,my treatedsuccessfully!Ifwe jeaopardized hadfollowedyour Youshouldputpatientsfirstandnot academic/professionalcareer, guidelines,hewouldhave tryingtosavemoneyforinsurance notbeendiagnosed,and andthecredibilityfrommy companies.Updateyourguidelinesso wouldhaveproceededinto personalrelationshipsback, ChronicLyme.Twomonths duetomylong1015yearsof thattheyfitintherealworld. beinginfectedwithLyme, ofabxandhewasfine. Babesiamicroti,Babesia Pleaserewriteyour

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ducani,Bartonella,andwhateverelsemightnothave shownup.AtleastIknowthat(nothankstothe medicalcommunity),Iwasabletogetseveralsamples ofafreePCRanalysisofmybloodwhereBabesia microtiwasconsistentlyfound.Basically,Ithinkweall wanttobevalidatedandnolongerlaughedoffbyour doctors.It'ssicktosay,butthatwouldmakethepain lesshurtful.Wemightaswellhaveacancerorheart conditionandatleastgetsomesympathyfrom it...right?P.S.Myfatherisaretiredphysicianwhowas askedtobePresidentClinton'sphysicianatonepointin hiscareerandmymother'sanurse.I'mnotignorant, justinformed. JackieMurdockIamnotgoingtorepeatwhat EVERYONEabovesaidbutifyoureadanyoftheposts youwillgettheidea.LymediseasepatientsareNOT goingawayandonedayoneofyourfamilymembers aregoingtogetsickandyouwilltrulylearnwhatitslike tolivewiththisterribledisease. NicoleLeyaneIDSA,I'dlikeyoutochangeyourfalsely writtenLymeguidelinesfortreatmentandtestingand insteadfollowtheguidelinesofILADS.Oryoucanjust keeppretendingLymedoesn'texist(seriously,howdo youguyssleepatnight?)andletmillionsofpeople sufferwhileslowlydying,manynotevenawareofwhat theyareinfectedwith.Whatgoesaroundcomes around. AndreaGarnerButtramIwouldlikeforyoutorelive thepast3+yearsofmylifeandthenseeifyour "opinion"wouldchange. PeggiMauneyWhyisitthatourcountryconsiders ChronicLymeDiseasenotavaliddiseaseandwillnot allowdoctorstotreatit?Ihaveafamilymemberwho hasbecomeveryillfromthebiteofatick.Hehasabad roaringinhisearsthatmakeshimdizzyandsick, tremors,musclepains,memoryproblems,andahostof otherseriousproblems. JoanneKrasnowHELP!Weneedbetterdiagnosticsand bettertreatmentstohealthethousandsthatsuffer fromtickborneillness!!!! BarbaraJacksonIfyouarereallyreadingthis,please listentous.Somuchmorewouldbeachievedtryingto helpusratherthanpretendwhatwehaveisn'treal. Therearetoomanyofustoignoreanditisn'tgetting better.

ShellyHebertIhavesufferedfromthisdiseasesince 1997.Ihavebeen"disabled"forthepasttwoyears afterbeinghospitalizedforpancreatitis,hepatitisand hadtohavemygallbladderremoved.Whileonthe hospital,theywereinjectingsteroids&Benadrylinto myIVevery4hoursforabout11days/2weeksfor severebodyrash.IhavesincelearnedthatLymefeeds offifsteroids;ifthedoctorswereawareofthisfactand ofmypreviousLymediagnosis,Idon'tthinkI'dbein suchbadshapetoday. IhaveaMastersDegreeandIjustrecentlyhadtoask myhusbandwhatpartoftheeggwastheyolk.Inow travelthreehourstovisitaLLMDdoctorbecausethe onethathadbeentreatingbecamenervousoncemy insurancecompanydeniedmyIVtreatments!Iwas finallystartingtofeellikemyselfbutbecauseof insuranceIwillnotbeabletogetthetreatmentthat washelpingme. SOMETHINGneedstobedonetoeducatemoredoctors andmorepeopleandinsurancecompaniesshouldnot havetherighttodenytreatmentifoneoftheirdoctors intheirnetworkrecommendsthetreatment!PLEASE HELPUSLymepatientsthatusedtobecontributing membersofsociety.Icannolongerteachspecialneeds studentsinanurbanschoolsystemorlivethephysical lifethatIusedtorunningmarathons,swimminginthe lakewithmychildren,hikingwithmyfamily,etc.Ifeel thatIcannotevenbeamothertomychildren sometimes.HELP&NOW! BambiAlbertyounowhave1,077commentsallonthe samesubject,ImagineThat! SuzetteSusanMackIwouldliketoseethehealthcare practitionerswhopurposefullydismissandrefuseto treatpatientswithLymeDiseasebeheldresponsible andaccountable.Theyarenottheonlyoneswith educationsbutunfortunatelymanyofusareboundin byinsuranceissuesduetofinances....andit'sreally toughtobelistenedtoorheard.Mybiggestdreamfor thefuturewithLymeispreventionofit,aswellastotal andcompletetreatmentofitforthosewhoalready haveit. HansTakedaWedesperatelyneedyourhelptochange theviewsandattitudestowardLYMEDiseaseand ChronicLyme..! GeorgeBatesPleasestoptreatinguslikeweareall crazy.SomeofushavehadLymesymptomsforover30

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years.Yourantiquatedguidelinesandpolicieshaveleft usoutinthecoldandmostdoctorscluelessabout Lyme.Wearesufferinganddieingyetyoufailtostill seriouslyacknowledgeus. Youshouldputpatientsfirstandnottryingtosave moneyforinsurancecompanies.Updateyour guidelinessothattheyfitintherealworld. TJFitzgeraldI'dliketoseeyouadoptthediagnostic criteriaandtreatmentguidelinessetforthbyILADS. CharlesSeckmanIwouldliketoseethattheyaremore opentothepositionofLymeliteratephysiciansin relationtochronicLyme.Iwishtheywouldseriously considerchangingthestandardcareofdiagnosisand treatmentinrelationtoLyme.IhadafalseElisaand wentovertwoyearsundiagnosedandendedupina wheelchairuntilfinallygettingtoaLymeliterate physicianthatdidawesternblotthatcameback positive.UnderthecurrentstandardifElisaisnegative primaryphysiciansinmyareawillnotpursueLymeany further.Lymeisnoteasilycuredespeciallywhennot caughtearlyasinmycaseandmanyothers. ValerieMainsWolfer http://www.youtube.com/watch?v=LKaPrAXeY&feature =youtu.be PeggiMauneyIfadoctorisfoundwhowilltreatLyme Disease,he/sheriskslosinghis/herlicense.Insurance refusestopaymanyoftheprescriptions.Ifyouhad childrenwhogotbittenbyatick,whatwouldyoiudo? Watchastheyslowlydied?GooutsideoftheUStoget treatment?IwouldlikefortheIDSAtoallowtreatment ofthehorrificdiseasethatistakingoverAmerica.Is thereaconspiracywithinthemedicalcommunitythat deniestheseveryillpeopletreatment? KarenKaiserMcGrathIt'stimetoadmitthatChronic LymeDiseaseexists,andmanypeoplearesuffering fromit.Aslongasyoukeepignoringanddenyingthe effectsofChronicLyme,patientscannotgethelpor insured.Rewritetheguidelinesandtakethepolitics outofourhealthcare. NancyWhiteSheaAnhonestdiscussiononLyme diseaseandit'scoinfections,please. MaggieFordleyIamamomof4and5yearolds.Iwas bittenbyaLymecarryingtickwhilebreastfeedingthe4 yearold.AfterallthistimeinsteadofgettingbetterI

keepgettingworsesimpleduetotheinabilitytoget propertreatment.Pleaseallowmetogetthetreatment Ineedbeforeit'stoolate. HansTakedaWedesperatelyneedyourhelptochange theviewsandattitudestowardLYMEDiseaseand ChronicLyme..!BeingamisdiagnosedLymestricken personforover18years,Ifounditsimpletoget antibioticsformydogthantoformyowntreatment. Doxycyclineisoneoftheleastexpensivedrugsonthe market,yetwesufferthroughthislifealteringdisease withoutyoursupportwhiledoctorswhotrybecomean outcasttotheirpeers.Pleasehearus,haveaheartand dotherightthing..! AnneMarcottyLyme.Getit?Faceupandfixit. CalebMorganLangMoreeducationfordoctorsto recognizeLymeDiseasesymptoms,andmore acceptanceforthedoctorsthatdotreatLyme. BobbyjoeHollidayThankyouforcreatingthispageI feelit'sinvaluable,Iwouldliketoseealawenacted thateveryDoctorwouldhavetologintoaC.D.C. databaseofpeoplewithsymptomstheydon't understand,Ifeelthiswouldhelpimprovethelivesof peoplewithwhatIreferasgrayDisease&Illness,why shouldDoctor'sturnpeopleawaytosufferfrom somethingtheydon'tunderstand,leastthiswaythe C.D.C.wouldbeabletoseehotspotsforanyunknown DiseaseorIllness&canactquicklytohelpthoseinneed BonnieLHuntsingerIwouldliketoseeLymedisease andalltick/vectorbornediseasesacknowledged, treated,givenfullweightduetothedebilitatingnature oftheseentities.Mylifehasneverbeenthesame...or "normal"sinceIwasbittenbytickscanoeingthe NarrowsoftheHarpethRiverin1989nearNashville, TN.Babesiosis,Lymeandothercoinfectionshavecost myfamilyenormouslyandcontinuetotakeatoll. PLEASEHELPUSBYLISTENINGTOOURREALLIFETRUE STORIES.AndpleaseapologizetoDr.Jemsekandothers likehimwhotriedtolivebythemedicaloathtohelp savelives.Thankyou. PhoebeKlemzihavereadthattheCaliforniablood supplyiscontaminatedbybabesia.imyselfdonatedmy bloodbeforeiwasdiagnosedwithLymediseaseand thecoinfectionbabesia.thebabesiadidn'tshowup untiliwastreated2yearsforLyme.iwasnotacdc positive.byyourguidelinesiwouldhaveneverbeen treatedforLymeandthebabesiawouldnothavebeen

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discovered.theignoranceisgoingtoeffectourblood suppliesevenfurtherandmanywillbemadeillbythis diseaseunlessyoufacethefacts. TimothyGreyREMOVETheLymeDiseaseguideline panel!Rescindtheirmembershipandrestorethe dignitytheIDSAoncehad.1,000+similarcommentsin hoursinnotacoincidence. AndreaGarnerButtramI'dlikeforyouto:bebittenby atickandforgetaboutitbecausethere'snoLymein GA,wakeupamonthlaterwiththesuddenonsetof constantnausea,electricalsensationsthroughoutyour body,rashesonyourhands,vomiting,painevery where,fatigue,losecontrolofyourhands, uncontrollablemuscletremors,andmigraineshave severaldoctorstellyoutheyhaven'tacluebuthere'san antidepressant(nothanks);Thenafewmoremonths intoitbeginexperiencing(ontopofalltheother)heart palpitations,anxietyattacks,paranoia,depression, floatingjointpainfromoneareatoanotherinanhour's time,dizzyspells.Haveafewmoredoctorstellyou Fibromyalgiajusthappensandyoujusthavetolearnto controlitORmyfavorite...it'sabadcaseofMONO! Developfoodallergies/sensitivitiesoutofnowhere... Meanwhileyourbabysonissuddenly2andyoucry becauseyouwishyoucouldbearealmotherallofthe time.DropoutofGradSchoolbecauseyoucan'tthink, read,orrememberwherethecarisintheparkinglot. SuddenlyrealizeayearlaterALLTHIScanbetraced backtothetickbiteayearearlieronceyourhusband remindsyouofthis. Findadoctorwhocaresandiscompassionateeven admitsyesyouhavealltheclinicalsignsofLymeand Bartonella,butIwillnotprescribeabx.Shedidlotsof goodthingsforme,butintheendshewasscaredto putherlicenseatriskandIhadtomoveonbecauseI hadtogetbetter.Shedidn'tknowwhatelsetodofor me.Intheend,mysonisnow4andhehasamom who'sbeenmuchbetterthepast8monthsbecauseof whatIHAVERESEARCHEDANDDONEFORMYSELFit wasdoordieIselftreatedformonthswithGREAT results.Tookabreakandselftreatedsomemore.Istill havenaggingissuesbutnow3daysamontharea struggleinsteadof30.Andinabit,Iwillselftreatsome morebecauseILIVEINTHISBODYEVERYDAYand intuitivelyknowwhatmakesmebetter.Godforbid anyoneinyourfamilyshouldsufferfromLymeI wouldn'twishituponmybiggestenemy.

StephanieBrownIwouldliketoseeChronicLYME Diseaserecognizedforthedebilitatingdiseaseitis, propertestingandtreatment. JackVandagriffIn1984Ihadaredbullseyerashon myleftforearmandthedoctorsaid"don'tworryabout itit'sjustanallergy".Memoryandconfusionissuesthat sameyearpromptedanMRIthatshowedwhitedots throughoutmybrainandthedoctorshoutedatme "you'reaf...inghypochrondiac!" IhavebeentoldsixdifferenttimesthatIamterminal butinspiteofsomeclosecallsI'mstillhere.I've listenedtodoctorafterdoctorsaythatI'mfine,it'sin myhead,MS,Behcet'sDisease,psychologicalissues, thewayIwasraised,chronicfatigue,Haradas,my mothermusthavebeenabusiveandonandon.I'vehad anablationforatrialfibbroughtonbyLymes, enormouslyswollenlymphnodessurgicallyremoved becauseofLymes,visionissues,weakenedimmune systemthathasallowedmybodytobeattackedby melanoma,AtypicalFibroxanthomaandSquamuscell cancer. I'vehadvisionissues,balanceissues,jointinflamation andbeendiagnosedwithCrohn'sDisease(wrongagain, it'sLyme).Itwasn'tuntiltwomonthsagothatadoctor said,"Let'slookforLymeDisease."Hewasthefirst doctorover27yearstomentionLymeandtoresearch myhistoryofsignsofLymeinthislongjourney,butall theothermanydoctorswerecontenttogivean incorrectdiagnosisandtakemorethanonehundred thousanddollarsfrommeandmyfamilyandthey couldn'tcareless,theyhaveaholdharmlessclausefor misdiagnosisandlethargy. But,Itellyou,theworstpartaboutthisentirethingis thatmythreeyearolddaughterwasbittenthesame timeIwas.Wenotonlychaseddoctorsforme,we chaseddoctorsforher.Herlifehasbeenseverly compromisedbecauseofQUACKSandindifference fromthemedicalprofession.ThankGodforthe courageousdoctorswhoaretreatingLymepatientsand SHAMEontheCDCandthemainstreammedical establishmentthatonlycaresaboutthedruglobby! KaetheMitchellThisyear,IwouldliketoseeIDSA recognizethatmanypeoplegetbittenbyticks,perhaps thetinypoppyseedsizednymphalticks,andtheyare notawareofit.Myhairdressernoticedher7yearold daughterhadlostanearring.Whenshelookedcloser, shesawanymphaltickattachednearherear.She

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removeditandtooktheticktothedoctor.Itwastested andcamebackpositiveforLyme,butthedoctor unbelievablytoldhernottoworryunlessherchild becamesick.Thisdidnotsitwellwithher;sheknew howhorriblymychildrenhavesufferedwithlatestage Lyme,bartonella,andbabesiosis.Shecalledanother doctorinthepracticeandinsistedonantibiotics. Question:Shecouldhavemissedthetickhadshenot noticedtheearwithouttheearring,warrantingacloser look...sohowmanyofushavebeenbittenbyan infectedtickandwedidnotknowit?IDSA,youmust knowthatthishappensandcouldleadtolatestage Lyme.Didn'tseethetick,didn'tseearash,nodiagnosis, notreatment,yearsofillness,doctorsandspecialists, lostschool,sickdays,crying,pain,suddenlynotableto function. LisaNagyPleasestopignoringus,LISTENtous. Youhavetheabilitytohelpusall.Pleasemakea change! NancyGillispieLymeisaninsidousdiseaesandithas robbedmy17yearsonofhischildhood.Therearevery fewLymeLiteratedoctorsandmostpeoplehaveto travellongdistancetogethelp.Prettymucheveryone inknowfrommysupportgroupswithLymehave becomebankrupt.Thiscountryneedsmoreresearch dollarstowardsthisdiseaseandfortheIDSAtostop makingthisafiancialandpolitictopic.....thoseafflicted aredesperateforyoutolistenandtocare. CoryRifferWhatwouldIliketoseefromIDSAthis year?PleaserecognizethatthereisachronicLyme diseaseandthattherearetreatmentsthatshouldbe coveredbymedicalinsurancecompanies.Thiswould helphundredofthousandsofpeoplesufferingAND DYINGfromsomethingthatistreatable.Ihavewatched mybeautifulwifepersevereforyearswithnohelpfor yourorganization.It'stimeTOHELPPEOPLEANDNOT INSURANCECOMPANIES! LisaShogrySavageHelpyourmembersEFFECTIVELY treattheirLYMEDISEASEpatientssothatwecanfully liveourlives,withouttheunneededdebtandstruggle thatwefaceduetodoctorswhorefusetorecognizeour existence.THETIMEISNOW! ReneeDahlenIwouldliketoseetheIDSAtakeLyme Diseaseandthepeoplewhosufferwithitseriouslywith compassionandanopenmind.Fightforus!Wewant

ourlivesbacksowecanbeproductiveandhealthy activepeopleinoursociety. JeffSlawsonMedicinebymeansofcorruptionisjustas irresponsibleasmedicinebymeansofsuperstition. Throwingsaltoverourshouldersisnotgoingtocureus justasyourLymeguidelineshavefailedtocureus.The onlyrealdifferenceisthatyourguidelineshave destroyedmanyofourlives(whileyourLymepanel linedtheirpockets).Throwingsaltoveryourshoulder onlymakesthefloordirty. BobbyjoeHollidaywell,maybeprofessorialHealthcare giversarenotseeingthebigpictureTimwiththe brokenMedicalsystemwehavetodealwith&does littletohelpthoseinneedforgoodMedicalService,as someonepostedearlierDoctor'sshouldbebetter Schooled&equippedtohelpeveryonewithagray Disease&Illnessbecausetheyhavenoclueasfarwhat todowithpeoplethatsufferwhattheydon'ttruly understand SarahCosbyAdvocateforLymeLiteratedoctorstobe abletotreattheirpatientsinamannercustomizedto thepatientsneedsandnotrisklosingtheirmedical licenses,reputations,andlivelihoods. ToddEshpeterPleasehelpus.Ihavebeenbattling Lymeandcoinfectionsforover4years.Yesitischronic andweneedhelp. KimZerwasPierreIwouldliketoseetheIDSAlistento theexperiencedLymedoctorsandcorrectthecurrent guidlinesinregardstobothdiagnosisandtreatment!To thinkthatinmylate30'sInolongersufferfromthe arthritisasIhadsincemyearlymidtwenties.Tothink ofalltheothersymptomsthatIsufferedwithquietly thatarenolongerapartofmylife.Itisincredible! WithoutthetreatmentIreceivedfromadoctorbrave enoughtoignoreyourcurrentLymeguidelinesIdon't evenwanttothinkofwhereIwouldberightnow.Iwas finallydiagnosedwithLymewhenmysymptomscame toincludeMSlikeparesthesiasandneurologicalpain.It isnotfairthatIshouldnotbeabletoreceivethesame treatmentatmylocalmedicalprovider.PLEASElistenso othersthatarenotsofortunatetohavestumbled acrossthehelpfuladviceIreceivedcanbediagnosed, treatedandlivemorecomfortableandproductivelives too!!! HarrisonCaseGiveuponthearroganceandtakea freshlookatthescience.

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foreventalkingabout.Geteducated.Talktothereal ShaunnaMarieIwouldliketoseeaLymedisease peoplewhoaresuffering,nottheinsurancecompanies patientstreatedwithrespect.Lymediseaseisrealand ignoringitWILLNOTmakeitgoaway!Howwouldyou andpharmaceuticalcompanieswhoareafterour feelifyouknewyouhadadisease,hadtheproofto money. showit,butstillhadpeopletellingyouitsallinyour head???Itsnotapleasantfeelingandhastakenatoll AdeleCyrIwould'velikedtohaveseenmysonsLyme onmanypeopleworldwide.Ithinkitstimetocome treatedbeforethewesternblotcamebacksohis cleanaboutthisdiseaseandstartmakingverysick sufferingcouldhavebeenshortened people(likemyself)healthyagain.Ifyouthinkaboutit, wouldntyouratherhaveabunchofpeopleworking, DeannaBachTalsmareal,truthful,solidscientific payingtaxes,contributingtosociety,thanbeingsickfor researchandsubsequentlychange. yearsandyears???Itscommonsense. ValerieCranHealingtreamtentsforlatestageChronic MichaelAndersonWhatwouldIliketoseefromIDSA LymeDisease!!!!! thisyear?Pleaserecognizethatthereisanillnesscalled chronicLymedisease.Lookhowmanypeoplethis ValerieCranRecognitionofthedisablingeffectsoflate diseasehastouched.Howmanymoreisitgoingto stageChronicLymeDiseasee...followedbytreatment take?remember,weallaren'tcrazy... thatcanactuallyhelpthoseChronicLymefolksget better...andstaywellforever SusanCampbellChrisFinkleandpeoplewhodonate bloodwhocannotbediagnosedandtreatedare MarieTaftTurleyThinkabouthowborreliaandthe spreadingLDtounsuspectingrecipientsofthatblood. syphilisspirochetearesimilar.Whenpeopledidnotget wellfromtreatmentforSyphilisbackintheday,they calledit"treatmentfailure."NotethatLymebacteria HeatherHaubrichJacobsonHelpussufferingwith hasamuchlongerreplicationcyclethantheSyphilis Lymedisease,it'sthatsimple,that'sallweareasking bacteria,therefore,itneedsmuchmoretimeto for.Tellushowthehundreds&thousandsofuscould possibleallbewrong?Lookatmyprofilepicture.Thisis eradicateit.Pleaseacknowledgetreatmentfailurewith myhusbandsufferingwithchronicLymedisease,my shorttermantibioticsforLymeDiseaseandhelp supportthosewhoareonlytryingtohelpsickpeople wholefamilyissufferingbecausehehastopayoutof heal.IhadfullblownLymeandhaveahealthylifenow pocketforalmostallofhistreatments.It'stimetolisten becauseofthecourageandkindnessofaphysicianwho tousthepatients,andfamily's.Pleaseneverforgetyour savedmylife. oathfirstdonoharm.Yourpoliciesareharmingmany innocentpeople. AliKirbyAnapology! BobbyjoeHollidaywhatbothersmeisDoctor'sare JohnE.MurnaneIVIpostedearlier,butafterreading influencedbytheirpeers&alsobythepoliticsofthe others'responses,Iwasinspiredtowriteafollowup. company'stheyworkfor(Hospitals)againarethinking It'spseudosarcastic,butpseudorealistic.Ifwecan't ofpoliticalpressure,theyallshouldhaveanopenmind getrealmedicalhelp,let'sjustsettle.Right?Ifyoucan't &notwritepeopleoffwithDiseasethatisnotpolitically beatthem,jointhem?I correcttheirinthebusiness mean, hey,whatcoststhe ofhealingnotplayingpolitics HauskinsSue Pleasehelpmakesure governmentmore,Plum orsawedbytheirpairs& othersdontsufferanymorebecauseof Islandorus?Thelackof afraidwhattheythinkorfeel, acknowledgementfroma isitbettertohealapersonor thisterribledisease.Thisissounfairfor thosethatcantgetdiagnosedandfor massivecommunityof playofficepolitics managedcareand thoseofuswhoknowtheyhaveLyme. uninformedmedical KellySmithNEWLYME Weneedanswersnow! practitioners?Whydon'twe DISEASEGUIDELINES. justallbeallowedtogoon disabilityandnothaveto Yoursalmostgotmekilledin workeveragain.Wewon'tbe"living,"butwe'renot highschool.20yearsoldandfinallygettingbetterdue "living"nowanywayandwe'rebeingpunishedand totreatmentsthatyoumakedoctorslosetheirlicenses

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sufferingconsequencesintheareaswherewetryto "live."IfIdidn'thavetoworryaboutmyprofessors throwingmydiagnosisinmyface,mysupervisor throwingmydiagnosisinmyface(whichTHEYhavehad chronicLymethemselves,whichisworseactually,b/c theycanrelate),andjudgingmeafter27yearsof overperformanceandsuccessacademicallyand professionally,wherethehelldowekeeppullingthe energyfrom?I'dtrulyliketoknow. What'smoreexpensive,becausemaybeweshouldask forachoice?Well,no,notreally,wehaveneverbeen givenachoiceofourbenefit,unlessitwasatthe sacrificeofothers,thoseweloveandthosewholove us.Seriously?This*will*bemylife'swork.AndI'm happytosaythatI'mnetworkedintosomeofthebest LLMDandresearchersinthecountry,soIfeelconfident tohaveagreatplatformtojumpupfrom.P.S.Go VirginiaforhavingaLymeDiseaseTaskForceandmany thankstoallofthoseontheboardandthosewho testifiedandtomycompoundpharmacistwhoisonit, myLLMD,andmyfriendsatourdearfriendedLyme Associations.NotIDSA,tobeclear,though. JessicaRainIwouldliketoseeeveryoneinvolvedin makingLymediseaseguidelinesdrawstrawsandinfect themselveswithticks.Thosewiththelongstrawscan treatthosewiththeshortstraws.Let'sseeif30daysof antibioticswilldothetrick?Surelyyoutrustyourown protocol?Easilycuredright?Ormaybeyou'lldiscover it'snotjustinourheads. RhondaLNielsenIwouldliketoseeyoursociety acknowledgethatyourguidelinesfortreatingLyme Diseaseareasantiquatedasthethethoughtthatthe Earthwasflat... Thisyear,ISDA,Iwouldlikeyoutoacknowledgethat becauseofyourantiquatedwayofthinking,a substantialnumberofAmericanshavelosttheir livelihoods,theirhomesandanythoughtofachieving theAmericanDreammanyofussodebilitatedthatwe cannotthinkbeyondthismoment. Mostly,inthecomingyear,IwouldliketoseeISDA,my society,workforMEandcountlessothersontreatment thatwouldpotentiallygiveusbacksomequalityoflife. Youoweusmuch,muchmore! HauskinsSuePleasehelpmakesureothersdontsuffer anymorebecauseofthisterribledisease.Thisisso unfairforthosethatcantgetdiagnosedandforthose

ofuswhoknowtheyhaveLyme.Weneedanswers now! MeredithLodgeIhad"ideopathicarthritisoftheknee" in1995whilelivinginCT.Iwasdiagnosedin2009. Thatsove15yearstofindLyme.Inthose15years,the moneyspentonendlessspecialists,mris,andXrays couldhavebeenpreventedbyareliabletest.Iaskthat youresearchandproduceorbackanalreadyexisting reliabletest. Ifyouaddupalltheneedlessamountsofmoneypeople couldhavesavedifinsurancecoveredLyme,orifthey werediagnosedearly,orhadreliableaccessibletesting, howmuchthatcouldbenefitoureconomy.Ifyouare tryingtoprotectus,peoplewhodidnotintentionally putticksonthemselves,couldyoupleasethisyearfind peoplewithresolvedLatestageLymesyndromeor whateverYourWordingis,andfindouthowtheygot better.Maybeyoucouldstudythem?Thisisadisease thatcausesbankruptcies,endsmarriages,andbreaks apartsfamilies. Mostimportantly,however,Iwouldlikeyoutotreat Lymesuffererswithrespect,andnottreatthemlikea PUBLICHEALTHTHREAT(yourwords.)Instead,finda waytostopusfromdeclininghealthandstopour healthcareprovidersfromturningtheirbacksonus becauseofyourwords. RandyGarvinLYMERSandLymefamilies:pleaseifyou canmakesuretoprintthesepostsout.Forsomereason Ifeeltheregoingto"lose"thesepostsandmessagesor maybethereFBpagewentdownsounabletogetany posts?Serious.Itcouldhappen.Ourfighttodayandthe onewewillcontinueuntiltherepostistakendown wouldbefornothing.Icanseedirectorssaying"let's justtelleveryonewedon'treallycheckourmessages. Justusedformarketingandgivingoutinformation.If wedon'thavecopiesofallthesepostswerescrewed!!! CharlieKnowerIwouldliketoseeanhonestandopen discussionaboutLymeDisease.Ialsowouldliketoseea responsefromIDSAtoalloftheseFacebookposts. ValerieMainsWolferPennsylvaniaStateRepDickHess helppushtheLymebillHB272. http://www.youtube.com/watch?v=tgCqBrTU&sns=fb TerryLipinskilistentothepeoplewithLyme,wearethe oneswhowentthroughmanynightmarestryingtoget diagnosedandtreatedforthis.

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wouldhavelovedtohelpmebutcannotduetoyour PauletteMeierPleasejoinwithILADSinamore guidelinessoinsteadwehavesoldandlosteverything thoroughunderstandingofLymeDiseaseandothertick borneinfections.TheILADSdoctorsIhaveseenknow tobuymedicineandyouknowwhat!afteroneyear,we WAYmorethantheinfectiousdiseasedoctorsavailable arestartingtogetbetter.Longtermantibioticsdohelp. tousbecausetheyhavebeenworkingdirectlywith Ourdoctorsshouldnothavetofacepersecutionfor patientsandhavebeenwillingtobeouttheironthe followingtheiroaths. frontlinesofthisbattle,treatingeachcasedifferently, asneedbe.Iwasoneofthefortunateoneswhosought TracyHansI'dlovetoknowifthereareIDSAdoctors outaproperclinicaldiagnosiswithinweeksofthetick readingthispage.SomeI'veencountereddidn'teven bite.Unfortunately,evenwithmysuccessfuleffortto knowthere'sacontroversysurroundingtheseinfectious getmylocalinternisttoprescribe4weeksof tickborneillnesses!IwenttotwoIDSAguidelines doxicycline,allthesymptomscameback. authorsinitially,andwastoldthatthere'dbea15% chanceofmyspontaneouslygettingbetter(no Sixyearslater,althoughmuchbetter,Iamstillinadaily treatment.Andthatnotreatmentwaswarranted(Ihad apositivespinaltap).SoIwaited.Andgotworse.Sad, struggletofunction.I'vehadtotravelover600milesto thatthisisstillhappening. findadoctorwhowouldtreatme,andhavehadto spendthousandsofdollarsinsupplementsand MelissaPowellThunIwouldliketoseeLymeDisease pharmaceuticalstogetasfarasI'vegotten.Your properlydiagnosedandtreatmentprovided organizationhascausedmoresufferingthanyou'llever immediatelywithouthavingtofightaninsurance know,becauseyouarehidingmuchevidencethatLyme companytogetthehelpsodesperatelyneeded.Iwould andothertickbornebacteriaareincrediblyresilientand liketheIDSAtohelppatientswhohavebeen incrediblydifficulttotreat.Yourdenialofthetruthof misdiagnosedandleftwithuntreatedLymedisease tickborneillnessdiagnosisandtreatmentseems, patientswhonowsufferfromextremeunrelentingpain frankly,criminalforallthedeathsandsufferingit's causedandcontinuestocause.Pleasehearus! withnoreliefinsight.THISMUSTBEADDRESSEDAND FIXED! KennethPoindexterAnhonestreviewoftheLyme treatmentguidelinestakingintoaccountresearchas ChristopherMontesPleasefacetherealitythatLyme wellastheundenyablesufferingofsmanypatients.At diseasecanbechronicinapercentageofcases,has multisystemic aminimum,acknowlegement manifestationsincluding thatpersistentLymedisease CindySteggallBye Iwouldlikedoctorsto neuropsychiatricand canexistjustlikealmost havetheeducationtobeabletodetect, cognitivepresentations,and everyotherinfectioncan. Perhapssomesupportfor diagnose,testandtreatforLymelegally. requiresheavyduty,long term,antibioticsaswellas thosethataresufferingcan NottobeafraidtodiagnoseLyme:that otherpossibletreatments receivethecaretheyneed. theymightlosetheirmdlicense.I'dlike suchashyperbaricoxygen. Somanyarebeingdenied fordoctorstobeknowlegabkeenough PleaserealizethattheIDSAis coveragebaseduponthe existingflawedguidelines. aboutLymetomakeadiagnoses,andnot notthemedicalendallwhen itcomestodiagnosticand treatLymepatientslikehypochondriacs. treatmentguidelines.Please StaceyMathiasKreme One doc told me that I would (in the lookatallthestudiesand HonestyaboutLymeDisease datethatareworldwide. andCoInfectionsplease. future)testpositiveforHIV.Hewasan infectiousdiseasedoc.IhaveLyme.Uggg Examinesomeofthese patientswhohaveposted KathrynRichardsI hereandgivethema foreclosedonmyhousethis _________________________________ respectfulmedicalevaluation yeartopayformedicinethat yourguidelinessayIdonot weighingbothmedicaltests LindaJ.LaneItsABUSE. need.Meandfivechildrenall andclinicalpresentations. havelatestageLymedisease. Lookbackatwhyyou Ihadtoleavethestatetoget becamephysiciansandwhat testeddoctorsaresoafraidtoeventest.Myfreeclinic youlearnedinmedicalschoolabouthavinganopen

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mind,knowingthateverypersonhasadifferent immunesystem,strainsofdiseasearedifferent,and manifestationsofthediseasearemyriad. Whenyouhavedonethesethings,givemeacall(I'min thebookhereinConnecticuttheepicenterofthe disease)andI'lltellyoumystoryofmonthsandmonths ofmisdiagnosisbyninedifferentdoctorsbeforeone doctorgotitright(Lyme,Babesiosis,andEhrlichiosis) andsavedmylife.Thenlookatmytreatment,taking8 yearstofinallygettoapointofnormalcy...then relapsingafteranotheryears.I'mnotoneofthosewho wantstobesick...Ididn'tmakeupthesymptomsIhave experienced,nordidImakeupthepositivetestsand culturesIhavehadevenafter"adequatetreatment". I'mapsychologist...atrainedprofessional,affectedand afflictedbyLymedisease.SopleaseIDSA...whenyou askwhatwewantfromyourorganization,takeahard lookatwhatI,andsomanyothers,havewritten.Thank you. AudreyAmirDespitethecombinationofoutrageand desperationfromtheLymecommunitywhich underminesitscredibility,thereissomethingtobesaid aboutthevariouslegitimatelyquestionablemedical practicesandconclusionstheIDSAhasreachedabout chronicLyme.Theremaynotbeenoughstudiesdoneto satisfythemedicalcommunity,andthatshouldnobe dismissed,buttheoverwhelminganecdotalevidenceof patientsmakingmedicalprogressoncetreatedwith antibioticsandvariousherbalsforLymesdiseaseshould notbeoverlooked.Itshouldspurinterestandfurther research. Pleasedonotloosesightofyourrootsandremember thatonce,commonmedicalpracticewastobleed individualsforafever,treatavarietyofailmentswith Mercury,andtoperformLobotomiestosolvemental healthissues.Whatwasoncetoutedas"thetruthand thewaythingsaredone"isnotalwaysso.Medicineis calledanartandapracticeforareason.Operatingon faiththatyoucareforthegoodofthepeopleandwant toupholdtheHippocraticOath,Iurgeyounottodo harmbyrefusingtolistenandexplorethepossibilities. JillRussellMywishisforIDSAtorecognizetheworkof hundredsofLymespecialistMDsandresearcherson the"otherside"ieILADSsupporters,asvaluableand worthyofconsideration.Donotdismissthededicated scientistsanddoctorswhoaretakingTickBorneIllness seriouslyandpushingresearch.Collaborate,with

respectandcommongoalofHELPINGUS.Openminds please. HeidiHealyMyentirefamilyoffivehaveLymeand coinfectionsBabesiaBartonellaandMycoplasma.Ihave dealtwiththediseasefor10plusyears.Ihaveproof throughstomachbiopsiesandPCRteststhatLymeis chronicespeciallywhenitbecomesnuerological.My dreamisforsomeleaderintheIDSAtocomeforth recognizethisandtellmainstreammedicalAmerica. TheoutdatedIDSAguidelinesneedtoberevised.Too manypeoplearefallingthroughthecrackswith undiagnosedLyme.Treatmentneedstobetailoredto thepatientandacoupleofweeksofdoxycyclineforthe averagepatientisn'tgoingtohelpthemmuchifthey havehadthediseaseforawhileandalsohavethe coinfectionsontopofit. TheIDSAneedstotrulyrecognizetheseriousnessofnot justLymebuttheBabesia,BartonellaandMycoplasma. IfIdidn'tgettheappropriatetreatmentformychildren theywouldprobablybeinaverageclassesonADHD medsandhaveanxietyissues.Todaymykids,though theystillhaveit,thriveinschool,aregreatinsportsand oneisevenclassifiedasgifted.Ithastakenmeyears andhundredsofthousandsofdollarstogetthemwell. Whycan'ttheIDSAseewhatLymeisdoingtoour societyandhowthemedicalcommunityisturningtheir backonit.PleasesomeoneinIDSAgetyourheadon straightandrecognizethisepidemic.IaminPAwhere ourstateisrankednumberoneincasesreportedyet mostmedicaldocssweepLymeawayandlookatyou withfiveheadsifyouevenmentionBabesia!!! CarlTuttleTheonlinepetitionagainsttheIDSA membersLymediseasestudyhasgathered129 signaturesfromacrosstheUS,Canada,Germany,UK, Ireland,Belgium,France,andtheNetherlands.Please takeamomenttoreadwhypeoplearesigningthis petition. Therearenowsevenstateswhichhavepassed legislationtoprotectclinicianswhotreatlatestage Lymewithlongtermantibiotics(CT,RI,MA,MN,NY, NH,andTX)andtherearesupportgroupsinnearly everystatewithnineteeninPennsylvaniaalone. IftheIDSAandCDCgotitrightwiththeironesizefits alltreatmentapproachforallstagesofLymedisease andfaultytwotiertestalgorithmwhythendowehave thismuchlegislationinvolvingLymedisease? Petitionsite:

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http://www.change.org/petitions/subjective symptomsaftertreatmentofLymedisease CarlTuttleHudson,NH Website: http://home.comcast.net/~runagain/site/?%Fhome%F DanielKeoughaBANonantibioticuseonhealthy animalsusedsolelyfortheslightincreaseinprofit margin,theyarethevastmajorityofantibioticsusedin theUnitedStates.Onhealthyfarmanimals!Thisiscrazy andthefarmfactorymodeldependentonthesedrugs needstoend. DanielKeoughPreventingantibioticresistanceand promotingpublichealthismoreimportantthanan industrialagriculturalcompanygettingafewmore penniesperanimal. AngelaHoockYikes...allofthesepeoplesufferingcan't bewrong.Pleasedomoretohelpthem.Myheartand prayersgoouttoallofyouwhoaredealingwiththis JaymeRocheKuleszItwouldreallybehelpfulifyou couldjustkeepopenmindswhenitcomestothe treatmentofLymedisease.Therearesomanyofusand ourchildrenwhohavesufferedsoterriblybecauseof theinflexibilityofthe"guidelines."Manyofusareon thevergeofbankruptcy.Whynotspendsometime talkingtous?Wewouldreallyliketositdownwithyou andhaveanactualconversationabouttheeffectsof thisinfection.Thanksforlistening. BrendaSigelWESTERNBLOTSWITHALLTHEBANDS COUNTED!!!! LindaJ.LaneItsABUSE. TraciLeisterLinstromChronicLymediseaseisafact thatneedstoberecognized.Itsrecognitionfromyou wouldenablemanysufferingfromthisawfuldiseaseto cometoquickaccuratediagnoses. LisaMannettiWagnerattentiongiventochronicLyme disease.pleasehelpthosewhoaresufferingwithout thehelpofinsurance. KarlaLehtonenTheInfectiousDiseasesSocietyof AmericaclaimsthattheycareaboutLymepatients. DONTBELIEVETHEM!!!OnWednesday,Iwenttoatalk byanInfectiousDiseaseSpecialistentitledChronic LymeDisease.Thespeakerwasscheduledtospeak

withdoctorsintheboardroomofthelargestteaching hospitalsinourarea.Thefirstslideofhistalkwastitled Whatdoyoudowhenapatientasksyoutotreathim foradiseasethathedoesnothave?Theentirerestof thetalkwasdesignedtogivephysiciansammunitionso thattheycanavoidtreatingpatientswithchronicLyme disease.Overandoveragaininhispresentation,the speakerdistortedtheresearchonLymedisease,while denigratingthescientistsandphysicianswithdiffering viewpoints.Onememberoftheaudienceaskedhim, whyhisslidesusedsuchinflammatorylanguage.His replywasthathedidntbelieveinlongtermantibiotic use,becauseitwasntsafe. Inhisconfession,Ibelievethatherevealedthetrue agendaoftheInfectiousDiseaseSocietyofAmerica.Its notaboutthequalityoflifeforpatientswithchronic Lymedisease;itisamisguidedefforttocurblongterm antibiotictreatments.Italsoreflectstheinabilityofthe physiciansinpowerattheIDSAtoimpartiallyand criticallyanalyzethedata,andtorealizethatthestudies supportingtheearlysimplisticmodelofthiscomplex bacteriaanditsaccompanyingcoinfectionsareflawed. LorindaMassingKoczurWithLymediseasebecoming moreepidemicthatAIDSIthinkit'stimethatthe guidelinesforusarechanged.My18yearolddaughter whoisaNationalHonorSocietystudentnowis strugglingbecauseofmemoryissues,becomingdyslexic fromLyme,suffersphysicalsymptomsdailythathave keptherfrombeinga"normal"teenager.Iwas originallydiagnosedwith"ashingle"8yearsago.NowI sufferfrommanyofthesamesymptomssuchas memoryissue,neurologicalissues,andthelistgoeson. IDSAneedstoeducatephysiciansandthepublicand changetheguidelines.It'ssadwhenourPrimaryCare Physiciansdon'tknowwhat'swrongwithusandjust lumpusintoa"category"thateithermeansweare hypochondriacs,crazyorhavechronicfatigueetc.It's timetojointhe21stCenturyIDSA!!!! LynnOlsonTumaWhatIwouldlikefromtheIDSAthis yearisareviewoftheLymeDiseasetreatment guidelinesandforChronic/LateStageLymeDiseaseto berecognizedasarealdiseasesothatuspeoplewho aresufferingcangetthehelpweneedtogetbetter.As itisnow,somanyofushavetopayoutofpockettosee aLymeliteratedoctorbecauseLLMDswon'ttake insuranceforfearoflosingtheirlicensetopractice medicine.Forsomeonewhoissick&unabletowork,it isalmostimpossibletocomeupwiththatkindof money.Also,whensomeoneissick&unabletowork,

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tryingtogetSocialSecurityDisabilityshouldbeaviable optionbutwithLyme,itisnotrecognizedasadisease thatcanleadtobeingdisabled&unabletowork becauseoftheIDSA'sunwillingnesstoseethat Chronic/LateStageLymeDiseaseisarealdiseasethatis destroyingpeopleandtheirlivelihoods. I'llsayjustalittlebitaboutme&mystory.BeforeIgot sick,IwasamakeupartistworkinginTV&film.Itwasa jobIloved,itwasmydreamjob.Now,Ican'tdomy dreamjobanymore.Infact,Ican'tdomuchofanything anymore.Ihaveabeautiful3yearoldsonwhohas beenrobbedofhavinghismommybewellandableto playwithhim.Ihaveawonderfulhusbandwhohashad tobecometheprimarycaregivertooursonaswellas mycaregiver.Hehashadtodoeverythingforus&I hateitbutthisismyreality. Iwanttobewellagain.Iwantmylifeback.So,IDSA, pleasereviseyourguidelinessothatthiscanhappenfor me&myfamilyaswellaseveryoneelsewhois sufferingfromthiscurseofadisease! CindySteggallByeIwouldlikedoctorstohavethe educationtobeabletodetect,diagnose,testandtreat forLymelegally.NottobeafraidtodiagnoseLyme:that theymightlosetheirmdlicense.I'dlikefordoctorsto beknowlegabkeenoughaboutLymetomakea diagnoses,andnottreatLymepatientslike hypochondriacs.OnedoctoldmethatIwould(inthe future)testpositiveforHIV.Hewasaninfectious diseasedoc.IhaveLyme.uggg RandyCeaglskeApprovalofbroadPCRtestingfor bacterialpathogensfromFDA.RememberwhyNIAIDis inHamiltonMontanathatwasaplacetolearnto treatnottesttreattopatent.Youruinedaperfectly goodcontinentduetooversightofendemicdisease. JenniferL.JamesIwouldlikeLymediseasetobetaken seriouslyaswellasallit'sawfulcoinfections.Iwould likeLymepatientstobetreatedwithdignityand respectandforinsurancecompaniesanddoctorsto HELPtheminsteadofdenyingthem.Iwantoneofmy verybestfriendstogetherlifebackafterbeing bedriddenfor18months!!Iwanthertobeabletoplay withherson!!Iwanthertobeabletogetoutofher bedroom,outofherhouse!Iwanthertobeableto enjoylifeinsteadofstrugglingthrougheachandevery dayjusttostayalive.

JasonOrloff DearIDSAmember, Bettertreatment KateBellandoAcknowledgementthatyourcurrent Lymetesting&treatmentguidelinesareboth ineffective&inhumane.Iwasdiagnosed&treatedfor Lymewith2weeksofamoxicillinin1984,atage4.Since then,I'vebeenlabeledwiththecountlessautonomic, arthritic,&psychiatricconditionsassociatedwithlate stageLymeuntilfinallytestingCDCpositiveviawestern blotlastsummer&gettinglongtermcare.After6 monthsoftreatmentwithmultipleantibiotics,(noneof whichwascoveredbyinsuranceofcourse),I'mfinally havingdayswhereIcantendtomyownbasicneeds again.I'mnolongerabletowork,andat32,Ihaveno ideawhatfeeling"well"feels.Don'tletthisillness continuetodestroylives. FranDavideIwouldliketoseeGP's,IDandNerologists INFORMEDenoughtotestforandrecognizeLyme Diseasesothatitcanbetreatedfromtheonset.Rather thanleavingpatientsundiagnosedandlefttofendfor themselvesandforcedtoresearchanddiscoverthat LymeDiseaseexistsandisaseriousillness.My15yr. olddaughterwasperfectlyhealthyuntiluntilJuly2007. InAugust2007shewenttoacottageandinSept.she startedtohaveneurologicalsymptomsasherbrainwas affected.Shehad3hospitaladmissionsandamultitude oftestsandLymewasneverconsideredasaserious optionforherdiagnosis.Ittookmeasaparent10 monthsanditmadealotofsensetorecognizethe possibilityofLymeandbythenmydaughterwas seriouslyill.Finally,aLymeliteratedoctornotinthe mainstream,hadhertestedintheUSandhertestsfor Lymewerepositive.InCanadatheyarestillnot recognized.WetravelledtoGermany,ItalyandtheUS fortreatments. TodayIstillstrugglewithDoctorswhoadmitthatthey don'tknowenoughaboutLymedisease.Today,my daughteristotallyincapacitated.Shenolongertalks, shecantstandupandshedoesnotwalk.Sheneedsfull timecare.Ithasbeenagrueling4years.Amother's worstnightmare.Thesaddestandmostfrustratingfact isthatsheremainsundiagnosedanddoctorsdon't knowhowtohelpherleavingherinpalliativecare.We needmoreresearch,moreawarenessandmoreopen mindednessfromDoctorstolookatthisseriouslyand findwaystohelpallthesepeoplethathavebeen affected.Worstofall,ifmydaughterweretopasson rightnowshewouldbelabelledascauseunknown.Asa

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mother,Iwanttoknowwhathappenedtomybeautiful healthydaughterandknowthecause.Iwouldliketo seeafullyfundedresearchcentrethatcouldbringsome lighttothishorriblediseaseandhelppeoplelikemyself tofindanswerstothemysteryofhavinglostafully functioningdaughter.www.chiaradavide.com MurielLynchIamtheparentofadaughterwithchronic Lymedisease.ShewasdiagnosedwithMS,("BUTyou've gotsomethingelsegoingonhere,too")atahighly respectedmedicalclinic.MStreatmentmadehermuch worse.For13yrswithdozensofspecialistspuzzeledby symptoms,aMSdiagnosisand3neg.Elisatestsinafew mos.wewereencouragedtofurtherlookintoLyme. TheresultoftheIgeneXtestwasPositiveLymeand6Co infections.Thefinancialandemotionalpiecetoallof thishasresultedinherlossofaterrificjob,lossofour home...payingformedicalnotcoveredbyinsurance, mostimportantlyanuncertainfuturefora31yrold whohasmuchtooffer.Icouldgoonanon,butItrust thatthesewordsandthoseaheadofmearegettingthe pointacross.WENEEDYOURHELPAND UNDERSTANDING. BevFeldmanIwouldlikeyoutotrainyourdoctorsto recognizeLyme.Wetookourveryilldaughterto20+ doctors,includingIDSAmembers,andnotoneofthem recognizedLD.Thedelaytodiagnosis(9months) allowedittogointoherbrain.Itdidnothavetobethat way.Itreallydidn't. KeithPoullosIDSAnotonlyaffectsUSApatients.Iithas allbuttotallyshutdownanyhopeofCanadian healthcaregivingusLymediseasepatientsanyhelp. BecauseofyourridiculousstanceonLymediseasewein Canadacannotobtaintestingortreatmenthere.For someunknownreasonourmedicalinstitutionsand governmentwanttofollowyourextremelybiasedviews onLymedisease.AllIcansaytoyouistoquitwiththe falsestatementsandliesandmaybeeveryonecanget somemuchneededrelief! BrianDutzePleasefocusonLymeDiseaseandrelated infectiousdiseaseresearch.Thatwouldbemosthelpful tomanythousands,andinalllikelihood,millionsof Americans. EvaEklundIfnotanyofyou(IDSA)clickthislinkand readaboutChiara.Therealitysheandherfamilylive. Thenidontknowabouthumananymore.Again.This couldbeyounext.Pleasedosomething.YouCAN.Be theoneswhomakeachange.Youwillshine!

JulianaVidichREALISTICandEFFECTIVEtreatment guidelinesforLymediseaseandotherTBD'sthatare basedontheexperienceofrealdoctorswhohavefor yearsbeentreatingpeoplewhohaveTBDs. EvaEklundseethelinkonFranDavidescomment BrendaSigelI'mthinkingsinceyourpolicyonLyme sucksyoushouldjustturnalltickbornediseasesoverto ILADS. MelanieSullivanIwishyouwouldstopturningyour headwhenpeoplearetruelyaffectedbyLyme disease...pleaseconsiderthis. AmyClareMyentirefamily,3generations,allhave Lymedisease!!Whydoesn'ttheIDSAexplainthatone tome???CongenitalLymediseaseisreal!!! MichelleMorrisIwouldliketoseeothertreatment optionsforLyme,andtoletyoustopbeingignorantto Lymediseasebeforeitgetsmoreoutofhandinour society. BeckyMoorePleaseconsiderdoingwhateverittakesto helpthemany,manypeoplewhoarelosingyearsof theirlivesduetomisdiagnosis,lackofpropermedical treatment,andtheemotionaldistressofnotbeing takenseriously.Mydaughterwouldliketohaveher bestfriendback! DarlenaKingTwogenerationsinmyfamilyare sick....thiswillallcomebacktobiteyouinthebutt someday..... ShellyMcCormickScheyderPleasereviewyour guidelinesfortestingandtreatment.Ihadaclassiccase ofLymeandwastreatedfor2weeksofDoxy.Now37 doctorslaterIamstillverysickandcannotafford treatment.IhavebeentoldIhaveALSandvarious otherveryseriousconditionsonlytofindafteryearsit wasLyme.Itisinmyheartandmybrain.IwasinajobI lovedasandgradeteacherforfor25yearswitha MastersinSpecialEducation,butduetoChronicLymeI amunabletoteachandraisemythreechildren.It saddensmetoseesomanyproductivemembersof societylostduetodatedstandards.Pleaselistenand respondtoourmessageofhopeanddesperation.We aretrustingyouhaveheardthemessagebynow. People...Realpeoplearesuffering.Prayingforanswers andaction.Thankyou!

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ChrisMorbelliUrbanowskiIwouldliketostopbeing treatedlikeacriminalforhavingadiseaseIcontracted whilewalkinginthewoods. RozThomasChangetheguidelinessothatLymedisease canbeadequatelydiagnosedandtreated.Stop pretendingthisdiseasedoesnotexist. ChrisMorbelliUrbanowskiIwouldliketoseedoctors treattheirpatientstothebestoftheirabilitywithout fearoflosingtheirlicenses. CourtneyLynnIwouldlikearepsonseforallofuswho arepleadingwithyou,pouringourheartsout,and voicingthetruth! DeniseWeaverIwouldliketheindividualsonthis BoardtodotherightthingandadmitthatChronicLyme Diseaseisindeedagrowingandterriblyharmful disease.Dotherightthing. SylvianeSchwarzDearIDSA,Itiswithgreatsorrowthat Ihavelearnedtodaythatwelostagreatmemberofour communityinHumboldtCountyCalifornia.Lyme diseaseinterruptedhiscareerandultimatelyhislife.I havehadthepleasuretomeetSteveseveraltimes duringhisstrugglewithLymediseaseandIonlycan shadetearsrightnow.Somuchforyoureasily diagnosedeasilycuredmottoRevisingyoupositionin regardstoLymediseaseandothertickbornediseases willnotcomeamomenttoosoonBelowisthe obituariesoftodayannouncementofSteveShearer http://www.legacy.com/obituaries/times standard/obituary.aspx?n=stevephilipshears&pid= DeniseWeaverThisdiseaseisrapidly spreading.Eventuallyitwillharmsomeoneyou love...yourdaughter...yourwife...you....yourelderly father.....doitforthesakeofsavingthem JillV.EastonIwasbittenbyatickinanupscale residentialneighborhood.Acatthatlivedinthesame neighborhoodfellillthesametimeperiodIdidwith thesamesymptoms.Thecat'sownertoldmethatthe veterinarianimmediatelytestedthecatforLyme Diseaseandputthecatonantibiotics.Iwas misdiagnosedwithMS,thenotherdiseases,then dismissedbytheheadofInfectiousDiseasesatahuge medicalcenter.Thecatrecoveredandwentontolivea healthylife.IwentontodeveloplatestageLyme Disease,multiplecoinfections,andloseeverythingin mylifephysically,financially,relationships,careerand more.HadIjustgonetoavetratherthanphysicians

whofollowyourguidelines,Iwouldhavehadabetter chanceoftheproperdiagnosisandtreatment. JasonMcInnisBettertestingandtreatmentforLyme disease! DeniseWeaverIwouldlikeyoutorealizethatfromthe timeyouhopefullyreadthisuntilyoueventablethe statementsmadehere,atleastoneofusherewillhave died...... LisaHiltonIDSA~Noonecanchangewhathappenedin thepastorwhywearebecamesick.Butit'sinyour handstochangethefuture!Please,weneedresearch andarealcure.Lookatyourkidstonightandgotobed thinkingaboutifitwasoneofthemoryourwifeoryour husbandthatwassick. SarahMyersPleasedotherightthingforthoseofus sufferingwithchronicLymedisease. HanYuLooIwouldlikeIDSAtopubliclyandbroadly admitchronicLymediseaseisrealandworktogether withotherorganizationsforacureandgoodinsurance coverageforthosewhosufferfromthedisease.There aretoomanypeopleneedlesslysuffering. DeniseWeaverRecognizethatchildrencannotattend school,cannotplayfootballandwithoutyour help.....thesechildrenwillbecomesicker...unableto attendcollege,dependentonthewelfareofourUnited States.manyofthemwillmarry...andpassthedisease ontotheirspouse.Manywilldeliverbabieswhowill alreadybebornwithLymes.Thisisalreadyhappeningat epidemicrate. DeniseWeaverIwouldlikeyoutodenythatPresident BushhadLymediseasewhileinoffice. JenniferSchierholtPleasemakeeveryefforttoeducate doctorsaboutLymeandencouragethemtotreatfor LymewhensomeonewithLymesymptomswalksinto theiroffice.MyhusbandhadtextbooksymptomsEM rash,fever,jointswelling,painbutwastoldhe couldn'tpossiblyhaveLyme"becausewedon'thave LymeinSouthernCalifornia".2yearsandthree dermatologists,threeallergists,twoimmunologists,two rheumatologists,twocardiologists,twohematologists, twoopthomologists,aneurologist,anoncologist,two gastronterologists,andaninfectousdiseasespecialist later...hehasyettoreceiveanytreatmentforLyme. Nowhehasswellinginhisheart,brain,spinalcordand

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eyes,facialnumbness,cognitiveimparement,bone TomMortonJustincredibleandeyeopeningtoread pain,andvisionandhearingloss.Thisdidn'thaveto theseposts.... happen.Itshouldnothavehappened. ShariRidoshDexterIcansee'notjumpingto PaisleyWilsonI'dliketoseeuptodatetrainingofID conclusions'butIDSAhashaddecadestocometoterms withLYMEDiseaseandit'sdebilitatingeffectswhen specialistsintheareaofchronic/late misdiagnosed.I'mprayingforyoupeople! stage/disseminatedLymedisease.I'mnotinterestedin blaminganyoneforpasterrorsormisjudgements,butI KaitiNagelLeaveyourignorancereborreliosis aminterestedinseeingpeoplewhoseliveshavebeen behind...awakentotherealityofthisepidemic. devastatedbythisdiseasegetaccesstoinformed treatment.Althoughtheneurologicalandpsychological JulieEngleI'dlikeeachpersonontheIDSAboardto effectsofthediseasecauseLymesufferersalmostas consider,"WHATIFYOU"REWRONG?"Whatarethe manyproblemsasthephysiologicalones,andwemay consequencestothelivesofmillionsofpeopleifyour notbeabletoexpresswhatwearegoingthrough articulately,wecan'tallhavemanufacturedthesame stanceonChronicLymeandyourIDSALymeTreatment setofratheroddsymptomswithsucheeryconsistency. GuidelinesareABSOLUTELYWRONG(asisbecoming Thisisaseriousandcomplexdiseaseforseveral abundantlyclearfromtheevidence)?Whatisthecost reasons: tosociety,theUSgovernment,andalltaxpaying 1)thevariousborreliastrainsaredifficulttoisolate/test citizens?Whatisthehumantoll?Theuntoldsuffering for ofmillions?Pursuingsuchanagenda,tonoone's 2)thereareusuallymultiplecoinfections benefitexceptinsuranceandpharmaceutical 3)biofilmshelphidethebacteriafromtheimmune companies,andthoseintheirpockets(yourselves?),is system notjustMALPRACTICE,it'ssimplyINHUMANE.Ifyou 4)thespirochetesareabletocorkscrewtheirwayinto can'tdotherightthing,stepasideandletsomeonewith aconscienceleadthewayin justaboutevery MicheleNobleIwouldliketoseeChronic 2012. organ/tissueinthebody 5)thesymptomswax/wane Lymediseaserecognisedasanofficial andaretransitory disease.Ihaveadearrelativewhosuffers PattiToweEllisonChangethe guidelinessothatLymedisease 6)thediseasemimicsmany greatlyandhasmultiplestandardlab canbequicklydiagnosedto others,soisdifficulttopin teststoenforceherclaim,yetlosesher ensurelessmorbidityinthe downinadifferential battleeveryyearduetothe"blackhole" future. diagnosisand 7)neitherGP'snorID inMedicarebecauseChronicLymeisnot specialistshavereceived MarybethWardIwouldlike anofficialdisease. enoughtraininginthisarea youtoworktowardsacurefor toconfidentlymakea LymeDisease.Iwouldlikeyou clinicaldiagnosis.Sure,theyarestartingtodoabetter tostopmakingitimpossibletogetmedicalinsurance coverageforthetreatmentsthatweneedtogetbackto jobofcatchingtheacutecasesandIthankyoufor reallyliving.Iwouldlovesomevalidation.Thereshould that!But,let'sreallylookatthepeoplewhoslipped benothinghushhushorshamefulabouthavinga throughthecracksbeforeanybodyreallyunderstood thehavocunormisdiagnosedLymecouldcause.What disease.Iamayoungmomofthreebeautifulkidsandi aphysiciancalleda'spiderbite'(classicEMrash,but havealreadymissedoutontoomanywonderful hindsightis20/20)robbedmeofoveradecadeofmy momentsbecauseofLymeDisease. life.I'vespentmylife'ssavingstryingtofindrelief. Pleaseworkwithhealthcareprovidersinother JoeDevenneyDevelopsafeandeffectiveguidelinesand countriestocomeupwithaneffectiveplantohelp treatmentsforLymeDisease.Createbetterprevention Lymesufferersbecomeproductivemembersofsociety opportunitiesincludinganewviablevaccine.Don'ttry again.Thankyouforyourtimeandforaskingthisvery tocontrolthediseasebutratherconquerit. importantquestion. SharonGallagherIwouldlikeyoutotakenoticeof Lymeitisrealandyourpresentguidelinesalmostkilled mebecauseofcoinfections.ItseemstomeIhave

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learnedmoreaboutthisdiseasethenyoucaretolook at.Totakedownpeoplescommentsbecauseyoudont likewhattheyhavetosayiswrong.Ihavedecidedthat wewillpostalldocsthatfollowyourguidelinesbecause yourefusetolookfurtherintotreatmentortheso calledpatternsonthebacteriasitself.Ialmostdied becauseyourIDSAguidelinesthattheDoctorfollowed wantedmetowaittoseeadermatologist.To46week appt.Ihadabloodinfection.Igotacallfromanother doctoronaSaturdaynite2daysafterseeingyourDr. GrossIhadastaphinfectionDrgrossstatedwasaskin disorder.Heneedstogobacktoschool.Iwillbean activistandwillnevershutuponthistillyoutake notice.Wedoknowwhatgoeson.BythewayIwork withthepublicandhavebeenmorehelptothemin awarenessthenyouhavedoneinalifetime. ItismygoalToMaketheDoctorsknowwhofollowyour guidelinespublicsothepeoplewhoneedhelpdonot gotothem. AnneSarbanisMoreresearchonacureforLyme Disease... SharonGallagherIfmypostisremovedforexpressing anopinionitwillonlyhurtyoumore.Helpthepeople andalwaysremembertheoathyoutooktobeadoctor. SharonHawkesThankyoutotheIDSAwebmanagerfor allowingthisthreadtoairpublicconcerns.Onthe propertywhereIoncelived,4peoplewere independentlyconfirmedtohaveLyme.IwasCDC positivebyQuestlabs,treatedaccordingtotheIDSA guidelines,andamleftwithpermanentdamage.One personhadanearlyinfection,andispresumablywell. Anotherpersonispermanentlydisabled.Stillanother, withlatestagesymptoms,CDCpositivethrougha hospitallab,wastreatedlongtermwithoralantibiotic incombinationandisnowwell. Clearly,thereismoregoingonherethanpeople"who neverhadLymetobeginwith"havingonly"theaches andpainsofdailyliving."Patientsarehavingsubjective ANDobjectivesymptomsinthelongterm,andthough thereareriskstolongtermantibioticuse,ifcarefully monitored,thepotentialbenefitsoutweightherisksof undertreatment. MatthewTylerThereislittletosay,thatcanbe respectfulinasituationthathasbeenthesourceofso muchdisrespect.Ihavebeendeniedtreatment,misled andmisdiagnosedhowcanIvoicetheseeventsina

"respectful"way?Especiallywhensomanywhohave triedhavebeenscoffedatandintentionallydismissed? Andnowfriendswhohavevoicedvalidconcernsto YOURquestionhavebeenblockedfromthisthread, upongroundsofwhat?Speakinguptoaquestion. Don'taskthequestionifyoudon'twanttheanswer. Andplease,Iampleadingwithyouheartheanswers! SharonGallagherNotsureyourfriendinlatestageis cured.Theymayhavegotittoliedormant. DarlenaKingWhenyouoroneinyourfamilyhas chronic,deadlyLymeDisease,maybeyouwill understand. KatieHoumanPleaseunderstandthatchronicLymeis real.Unfortuney,peoplearesufferingendlessly, becauseoftheinabilityfortheIDSAtoactuallytakethe timetoactuallylistentothosewhoaresufferingfrom suchdebilitatingeffectsofchronicLymeaswellasco infections. ChrisIantoscaCampbellIwantthetruthout.Iwantthe guidelinestobechangessothattests/meds/doctors visits/treatmentswillbe*coveredbyinsurance.*Iwant mylifebackaswellasmykidsandmydisabled husband.ALLinfected!Iwanttoberecognized. BonniRooneyIDSA,youpostedthequestion,"what wouldIliketoseeinoursocietyinthecomingyear?" Myferventhopeisthatsomeonewithinyour organizationactuallytakesthetimetoreadeachand everyoneofthesepostsandthenaskYOURSELF(the membersofIDSA)thequestion,"Whatcanwedoto helpthesepeople?"WealreadyknowwhattheIDSA's stancehasbeentowardsChronicLymeDiseaseIt's timeforachange.Please,PleaseaskYOURSELFWhy areallthesepeoplestillsick?Andwhatcanwedoto helpthem? MicheleNobleIwouldliketoseeChronicLymedisease recognisedasanofficialdisease.Ihaveadearrelative whosuffersgreatlyandhasmultiplestandardlabtests toenforceherclaim,yetlosesherbattleeveryyeardue tothe"blackhole"inMedicarebecauseChronicLymeis notanofficialdisease. LisaCorbeilHollingsworthStophurtingLymeDisease patientsandthedoctorswhotreatus.Ifyoudon'twant tohelpfindacureforChronicLyme,justgetoutofthe way!You'rekillingus!

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CarolinRaleighButtrickIwouldliketoseeacurefor Lymediseaseandallofthecoinfectionsthatexist. ChristianHornungStoplying!ThereisChronicLyme Disease!TherearemanyCoinfections!ListentoILADS! Thankyou. SharonFingletonAllowdoctorstodiagnoseandtreat Lymepertheirexperienceandknowledge,notper guidelinesthathavenobasisintruth.Preventdoctors withfinancialorotherinterestsinLyme meds/treatmentsfrombeingontheboarddictating Lymetreatmentguidelines. SusanCampbellChrisFinkle http://www.wickedlocal.com/northattleborough/news/ opinions/x/McClearyStatefacesaLyme crisis#axzzigIwoWc SusanCampbellChrisFinkle http://gonzagalawreview.org////unprecedented antitrustinvestigationintotheLymedisease treatmentguidelinesdevelopmentprocess/ AnaChristineStopdenyingLymepatientsappropriate treatment!StopdenyingchronicLymeanditsseverity! StopwithhuntingLymedoctors!Reviseyour guidelines,traindoctorsanddowhatthefirsttaskof doctorsshouldbe:Fightingthediseasenotthevictims ofLymedisease.Standup,IDSA,forthesickand suffering! DoloresClaessonToaddtothislistisYersiniawhichis showingupinEuropeandDenguefeverwhichhas shownupinaLymepatientinNJandPseudomonas areuginosawhichhasalsoshownupinaLymepatient inNJ.Doyoureallythink14daysofdoxycyclinewill eradicateallthesepathogens?Researchoutof GermanyhasalsoshownthateachBorreliais susceptibletodifferentantibiotics.Amoxycillinmaybe thechoiceforoneanddoxyforanotherbutwecannot testfordifferentBorreliaatconventionallabs.Really thisignoringoftickbornepathogenshasgottostop. Fungiaremostlikelypartoftheproblemaswell. Lymies...Iwouldgetallthesetests...WesternBlotfor Borrelia,alsotestforBorreliahermsii,andBabesia duncaniandmicrotiandQuestcantestforduncani, Bartonellahenselaeandquintana,Brucella,Tularemia, CoxiellaburnettiorQfever,manyrickettsiasieRocky MountainSpottedFever,Typhus,Ehrlichia,Anaplasma phagocytophilum,EBV,CMV,allCoxsackieviruses,and

nowPowassanvirusanditscousinDeerTickVirus,HSV 1and2,HHV18ifavailable.ParvovirusB19 papillomaviruses,Toxoplasmosis,Chlamydiasand Mycoplasmasandgetgenetictestsfor hypercoagulationlikeMthfrandFactorVleiden,and testallyourIgGsubclasses14,andCD57andC3aand C4aandCBSmutationsandHPU/KPUandmoldtesting sincesomanyofushaveissueswithmold.ECPor eoisonophilcationicproteinseemstosuggesttodocs thatyouhavebabesia.Alsotransfergrowthfactorb1 andBetaStrep.HighCD57countsmaybeassociated withBetaStrep. Heavymetalshaveapartinthisandwearelowin SecosteroidDorvitaminDandsomearelowin Potassiumandothersiron.Manyaredeficientinall aminoacids.Ourhormonesareamessandthewhole HPAHypothalmicpituitaryaxisistheproblem.Wecan haveprobswithouradrenalsandthryoid...wedonot convertT4toT3andinmycaseIhavehighreverseT3 orrT3.Wearequitelowintestosteroneaswell.Check outeveryhormoneinyourbody,aminoacidsand vitaminsandminerals.Thereareover100viruseswe cangetfromatickandalsomanyparasites.Thelabs thatinsurancecoverscan'tfindaparasitewhenwecan seeitunderthemicroscope.QuestatNicholsInstitute inValenciaCaliforniacanculturesamplesandmight evenbeabletodistinguishBrucellasuisfrommelitensis orarbortus.WealsoneedanMRIofourbrainwithand withoutcontrast.Manylymiesareshowingupwith pituitaryadenomasandpheomchromocytomas.Make surethatyoudonothavethese. Ihavespentyearstryingtofigureoutwhatisinusand sofarthisiswhatIhaveseen.Unfortunatelywhenyour physicianmaytakeyearstoorderallthenecessary tests.Makesureyougettestedsoonerratherthan later.Onemorething.....youmaygettestedfor Brucellatodayandtwoyearsfromnowmayshowup IgMpositive.Theimmunesystemisoverwhelmedwith allthesepathogens. ToreNicolaiFjelldal Howvirusfromtheherpesfamiliycanbecomepartof thehumanDNAinwhiteblodcellsandcausecronic illnessesasCFSanFM.Ifleakygutcanbemeasuredby IgGreactionstofood,andifthereisaviralcomponent intheleakingfromthebloodtothespinalfluidinCFS andAlzheimer. JoseLuisCruzOneofmyfriendhasbeendealingwith thisforyears,doctorsgavehermanydifferentdiagnosis

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andmostwouldjustdismissherasallbeinginherhead, butthetruthofthemateristhisisnoguidelineson howtotreatLymediseaseuntilistolate.Letsmakethis happen!!! DoloresClaessonIguessthismightbeatutorialfor IDSAdocs? DoloresClaessonPleasedon'tdeletethispostforitis tryingtohelpLymepatients.AlsobothinEuropeand Americahuntershavetapeworms,nematodesand flukesandthedeernematodewheninjectedintoa moosemakesthemoosemoveinadizzyingfashionand die..... AnneeElliotBottomline:2weeksofDoxydoesnot work.REVIEWANDREVISEYOURGUIDELINES.What's neededisaggressivetreatment.WAKEUP. RuthMyersItistimetolookattherealityofchronic Lymediseasewhichdoesexistinspiteofwhat insurancecompaniesandIDSAwanttobelieve.Ihope youneverhavetowatchsomeoneyoulovegothrough whatmydaughterandhusbandareenduring.Iwatched theamazingimprovementthattookplaceinmy husbandduringhis5weeksofIVantibiotictreatment andamnowwatchingwithhorrorthedeterioration thatistakingplacesincetreatmentwasstopped.But IDSAandtheCDCsayheiscured....... SusanBrake Weneedtobeaskingformoreresearch,bettertesting includingcoinfections,andbettereducationfor physicians. CindyWatersDurdenChangeyourguidelines.Establish bettertestingwithupdatedinformationfromthis centurynotbasedon CindyWatersDurden1980'swork.Sorryhitsendtoo soon.ChronicLymedoesexist.Quitignoringit CindyWatersDurdenChronicLymedoesexist DavidDayArealisticapproachtoopenlypromoting Lymeandthewellbeingofpatients,nomatterwhatthe courseoftreatmentis,wouldbeawelcomedchange for2012! CatherineFoxTwoweeksofdoxydidnotwork.After needlessdelayswithdoctorsfollowingyourguidelines whowouldnottreatme,Ifoundonewhowouldand

aminabattlenowtogetmylifeback.I'vemetsomany otherswhoaresuffering.Pleasesupporttreatmentfor chronicLymesoeveryonehasachance. EthanComeauimakidsoitmaynotmatterbutmy mom,dadandlittlesisterhaveLymedisease.Ihave appointmenttotestitformein1monthmyhairfalls outandigettickbitesinsportsalotsoiamscarediwill besicklikethem.mymomissosadshecriesalotnow shedidntcrybeforeshegotsick.mydadhastostop thecartowalkaroundfromnumbfeelingsinhishands shakeshishandsalldayandisinpainsomuch.mom hastolayinbedalotwhenitsbadandsheworries everytimewewalkoutsidescaredwewillgetabite.we havetwobigboxesofvitaminsshetakescupsforher andmydadeverydaytheyaresofullicantbelievehow manypillsthendrinksstuffthatlookslikeyellowpaint. my4yearoldsistertakesomanydropsnastyoneitried onceandbottlesofpinkmedicineshehatesoneof themandmomhastobribehertotakeit.shehates mostthatmysisterissick.ijustwantmyparentsand sistertobeokagaintheyneedacureitsbeensomany yearsandtheyarestillsick.mygrandmacomesbyall thetimeandshejustsaysimworriedaboutyoutomy momshedoesntsleepworryingaboutherandsheis olderihopesheisokto RobCotterThereisascientificprocessthatisnottaking placeherewhenitcomestoLyme.TheIDSAcan't determineweakprotocolandthenclosetheireyesto millionsofsufferers.Inanequitablesociety,theIDSA wouldberecognizedascomplicitintheprolonged sufferinganddemiseofmillionsofpeople'lives.The IDSAhasfailedintheirmissionandcontinuestodoso unabated. JodiIrelandbettertreatmentforchronicallyillLyme patients KaetheMitchellToEthanComeauabove,itmatters! Youareabravekidandthankyousomuchforposting yourstoryhere.Youaredescribingbetterthanwe grownupshavebeenablewhatourfamiliesendureand livewitheveryday.Youarenotalone,Ethan!Wealso have"yellowpaint"(Mepron)atourhouseaswellas tonsofpills.Yourmom,dad,andsisterwillgetbetter.It mustbehardtoseethemsick,buttheyareontheir waytohealth.Don'tbeafraid. ChristieLeyWhatwouldbewonderfulisiftheIDSA wouldtreatpeoplewithLymediseaseasindividualsand allowdoctorstotreatthemasneeded.Forfartoolong

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theyhavebeenleftoutinthecoldduetorestrictions ontreatment.LymediseaseisrunningrampantwhereI live,withbothdogsandhumansbeinginfected.Ihope thatpropertreatmentanderadicationofthedisease canbefound. CynthiaMorrisThankyouforasking!Please,please revisittheLymeguidelines,thistimekeepinginmind therealityofpatientexperience.(Idbegladtooutline myrealityforyou!Hint:theLymedidntgoawayaftera monthofantibiotics.)Andignorepeerreviewedarticles thatinsistonabullseyerashandconfirmingbloodtest beforeallowingpatientstobeincludinginthe studybecausethosepatientswhowereluckyenough tobetreatedimmediatelyuponinfectionusuallyarent theoneswiththerecurringproblems!Itstherestofus youhavetostudybeforeyoucanconfirmordeny persistentLyme.Andallthosepeerreviewedstudies thatyoubaseyouropinionsondonttakeusarguably themajorityofLymecasesintoconsiderationatall. (cynthia@netmorris.com) JennyGuzdek"Don'ttalkbadaboutourdocs."IDSA. Soweshouldsparetheirfeelingswhentheydonothing tospareourpain?Spareourpain.RecognizeLyme;in returnwe'llspareyourfeelings,it'sgiveandtake. JennyGuzdekWhyaretheydeletingposts?Theydon't wanttheworldtoknowthetruth.Thebehavioror deletingprovesthis. MondayMercerLymecauseschronicintracellular infectionsthatdonotshowuponstandardlabtests. Thesebacterialowertheimmunesystemcausing multiplesystemicdisorders.Theyhidefromthe immunesystemmakingthemextremelydifficulttokill. OnceLymeandcoinfectionshave compromised/disabledtheimmunesystem,latent virusesandotherbacteriathatarenormallysuppressed (suchasHHV6,CMV,mycoplasma,etc.)cometothe surfaceandthrivecausingallsortsofproblems,leaving thebodyopentoallsortsofotheropportunistic infectionsandthepersonwithaloweredimmune function. ChronicorlatestageLymediseaseisextremelyserious andcanbedeadly.Itisnoteasytotest,treat,orcure. TheIDSAneedstodevelopmuchbetterlabtests,to educatethemedicalprofession,tohavetreatment guidelinesthatenabledrs.totreatwithappropriate antibiotics,supplements,and/ornaturalantibioticsuntil thepersoncompletelyrecoversandhastheirlifeback.

TheIDSAneedstoadmitthatLymeiseasytocatchbut isanextremelycomplicatedillnessandisverydifficult andtimeconsumingtotreatsuccessfully.Thisillnessis spreadingfasterthanAIDsbutwe'restillinthedark agesweneededucateddoctors,adequatetesting,and successfultreatment...ANDinsurancecoverageforthe folkswithsuchadevastatingdisease! DebraGrasleyDoloresClaesson,doyoumeanYrsinia pestisasnewlyemerging? MarieStarkweatherAcknowledgmentthatChronic Lymeexistsandawareness!Wehavelistenedtoyour liesfortoolong! KathleenDicksonWe'dlikeyoutoturnyourselvesinto theFBI/USDOJforthehealthcareFRAUDthatruined discoveryineverymajordiseaseforthelast15years: http://www.actionLyme.org/ ExpandPreview DebraGrasleySo,willIDSArefundallofthemoneymy insurancecompanypaidoutformy"treatment"sofar, sincemydoctorswereforcedtofollowyourguidelines? KathleenDicksonWhenIDSAiseithersuedor prosecutedforthisLymeandLYMErixfraud,they'llsay italltookplaceundertheALDF.comorganization. KathleenDicksonMortZuckerman,theAIG Greenbergs,PhilipMorris,etc. KathleenDickson http://www.actionLyme.org/ALDF_BOARD.htm KathleenDicksonItwasMcSweegan'sgangwho committedthecrime.DurlandFishandhisbuddiesat AIG,MortZuckermanetc. KathleenDicksonI'dsay,toIDSA,wedon'tneedyoufor anything.Wegotthescience. http://www.actionLyme.org/ ExpandPreview KarinHerrickHarrissIwouldlikeyoutochangeyour viewonLymediseaseandacceptthataresomecures!I wouldlikeyoutolistentothepeoplewhohavehad thierliveschanged.Myhusbandwasdyingfromthis disease,andheisanactivedutysoldier.Idonotthink hewilleverregainhishealthto100%,butheisalive anddoingwellnow!Andstillonactivedutybytheskin ofhisteeth.

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andnodiagnosisalthoughIknowthatiswhatIhave WendyFitzgeraldFaneuffLymeisneither"hardto andIcannotfindadoctortohelpmeorwhotakes catch"nor"easytocure"!You'vegotitbackwards.In insurance! endemicareas(whichbasicallymeansalmostallofthe US)Lymeandit'scoinfectionsareeasytocatch.With MelindaWimmWolffFosterIwouldliketoseeour thelackoftrainingandsupportforthelocal societyplacegreatervalueonhumanityovermonetary pediatriciansandgeneralphysiciansitcertainlyisnot gain.Iwouldliketoseeusworktogethertocreate "easytocure"becausetheymisdiagnoseditformy affordablehealthcareforall,toalloweachperson kidsforYEARS!Mykidsweretoldtheyhadeverything freedomandchoiceintheirowntreatmentandchoice fromChronicFatigueto"it'sallinyourhead!"Well,itis ofphysician.Iwouldliketoseephysicianshavethe inhishead,literally! freedomandabilitytochoosetreatmentsbasedon individualplans,notfederallymandatedguidelines.I RuthThomasIt'sCRIMINALthewayyourphysicians wouldliketoseegreatervalueonrealhealthby ignoreLyme!Ihavelostyearsofmylifedueto focusingontherootcausesofdiseaseratherthanthe ignoranceoftheIGenixpositivetest4monthsof symptoms.IwouldliketoseeAmericavaluethenatural antibioticsyearslater,andI'mbacktobeingmyself. vstheartificial/immitation/chemicallymodified.Maybe ifallthesethingswerevaluedmore,wewould TomRobeyIwouldliketoseetheIDSAopeneyes,ears irradicatedisease. andmindstotherealitythatLymediseaseisaserious healththreat.I'msureIcannotsaymuchmorethanthe 1,000+havealreadysaid,but DonnaMacPhersonLugar Iwillhavemyvoiceheard KathleenDickson Forthelast15yearsall ForgetLymediseaseandjust anyway.Thereistoomuch refertoVectorBorne IDSA/ALDFhaveeversaidisLymedoes blackandwhiteinthisissue, Illnessesandensurethat notcauseadisease. theIDSAleaningsohardone diagnosisisclinical!There way,andchronicLyme isn'tanybloodworkthat believersleaninghardthe wouldconfirmallthevarious ______________________________ otherway.Nooneishelped associatedcoinfections Jerry Leonard As a result of the use of whentheextremesareheld anyway(unlessyouwantto ontosotightly.Theonly paythousandsofdollarsfor treatmentguidelinestodenytreatment, every individualtest)!Make solutionistoworkinthe Americasmostegregiousexampleof sureALLDoctorsknowALL grey,TOGETHER!ILADSand medicalmalpracticethroughtreatment thesymptomsofALLthe Lymeadvocacygroupshave denial is now an everyday reality, possiblevectorborne expressedtheirabsolute willingnesstoworkWITHthe conductedonagrandscale,andrunwith illnessessothattheycanbe individuallytreated!Make IDSAandhelpallthosethat thecomplicityoftheCDCandother surethatEVERYONErealizes aresufferingsoterribly.It's publicagencies,whichareexploitingthe thatitisnotthatrareand timetolistentothe publicinsteadofprotectingthem.Ihave thattherearenotjustsmall multitudes,andconsiderthat youjustmighthavegotthis referredtothisastheinstitutionalization pocketsofendemicareas!It onewrong.Weareherewith isalmosteverywhere!Evenin oftheTuskegeeExperiment. yourownbackyard! ourhandextended,readyto cooperateandcollaborate, KathleenDicksonRonHere anddowhatisnecessaryto areallIDSA'sreportswhich bringLymeandit'sco sayLymeisapermanent infectionsintocheck.Thank braininfection: youforlistening. http://www.actionLyme.org/BRAIN_PERMANENT.htm ExpandPreview RonCrowleyAnacknowledgementthatchronicLyme diseaseexistswouldbeagoodstart! KathleenDicksonTheyobviouslyallknowtreatment failssincetheyaretheauthorsofallthose20+reports. JaneHarperechoingCHRONICLYMEDISEASEbeing recognizedproperly!Ihavebeensufferingformonths

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TonyaDahlgrenIwasbit7yrsago,NorthernCalifornia, haveagreatsetofdrs.Iwasn'tactuallydiagnosedtil Jan2011.I'venowgotchronicLyme.Idid10monthsof antibioticswnohelp.Iamdyingeveryday.I'drather dienow@34thendealwthisdiseaseforthenext10+ years!IpukeeverythingIeat.I'vegained40lbsin6 months.IhatethisLIFE!GETACURE....THEREISFOR AIDS KathleenDicksonBecareful,everyonepostinghere. ThisislikelyIDSAlayingbaittosaysomeoneismakinga threatagainstthem,orelsetouselatertosaywe'reall nuts. KathleenDicksonAnswer:"WhatwasOspA?""Ifyou're suchexpertsoninfectiousdiseases,whatwasOspA?" IDSAcan'tanswerwithoutselfindicting. TimLodgeIwouldliketheIDSAtoacknowledgeLYME DISEASEasanACTUALdiseasesothetensofthousand ofpeoplesufferinginthiscountrycouldgetactual treatmentandmedicationscoveredbyinsurance. ToniEliseRomanelliAcknowledgeLymeasaDisease. AndSHARETHECUREYOUALREADYHAVE.Becauseitis there.Stopmakingvirus'sforwarfare.Startmakinga difference. LaurieNusbaumMillerTorevisittheareaofChronic LymeDisease.IamlivingproofthatthisISachronic disease,andshouldbetreatedassuch.Iamtaking medicineforFibromyalgia,Depression,Anxiety,Joint Pain,HighBloodPressure,RestlessLegSyndrome, Insomnia,andGERD.2yearsagoIwashealthy,witha fulltimejobandactiveinthecommunity.Nowithurts justtogetoutofbed.HowisitpossiblethatIcanhave allthoseconditions,AFTERbeingdiagnosedwithLyme Disease?Ihaven'tbeenabletoworkinalmost2years. AndIamSTILLNOTevengettingthenecessary antibioticsthatmayactuallyCUREtheproblem.It makesmeangry...ontopofeverythingelse.STOPTHE LIES!! SandiBohleAcknowledgementofLymeDiseaseasa diseaseandbettertreatmentforthoseofuswith chronicLyme.Yourguidelinesdonotacknowledgeus& forthemostpart,mymainmstreamdoctorsrefuseto believeeventhothetestshaveprovenit.Ihavehadto gotoadoctoroutofnetworktogetanyhelp.LYMEIS ANACTUALDISEASE!!

DenisePresnellWeidnerIwouldlikeInfectiousDisease ClinicstoquitturningawaypatientswithChronicLyme, justbecausetheCDCandIDSAthinkpeopleshould expecttoexperience6monthsofsymptoms.Those6 monthsjustsealinthediseaseandmakesitlastfor20 years.Treatmenthastobeimmediateandcontinual untilthebugsaredead. AllysiaMoranIgaveLymediseaseAndpossibleco infectionstomychildrenduringpregnancy.Weallhave positivewesternblottests.Weallwentmissdiagnosed forover23years.Iwentmisdiagnosed.Myyouvested startingshowingsymptomsasababybutnoonecould figureoutwhatwaswrongwithhim,diagnosisoffailure tothrive,noenergy,sickkid,hadsurgeryfortubes twicebefore2yearsoldincludingadenoidsandtonsils, moreallergiesthenthespecialisthaseverseenforsuch ayoungkid,GIproblem.sixmonthsafteroral antibioticsalmostallhissymptomsaregone.Weneed bettertesting,opentobeopenmindedabouttreating Lymetillpeoplearenolongersick.IttookIVantibiotics formetostarttoimprovewithlongtermantibiotics. I'mgettingmylifebackbuthadtoadvocatefirmyself andkids.Wenttomanyspecialistsformyselfno diagnose.Onedoctortoldmehecouldmakeoneup causehecould.FinallyIfoundadoctorwhoknows moreabouttickbornillnessandgettingmylifeback.Of allthosespecialistIsawnotonecheckedmeormykids fortickbornillness.Wheneverythingwasruledoutyou thinktheywouldcheckintothisduetomyhistoryno. Theyrathermakesomethingupthendealwiththe problem.IwouldliketoseechangeLymelookedatlike anyotherillnessasaclinicaldiagnosistheirismore thenonetesttocheckforLyme,bettereducationforall ourdoctors.Toexceptlongtermtherapyespecially whenitwasnotourfaultwewheremissdiagnosed. Changeneedstocomethousandshavebeenthrough thisandagree.patientsshouldhavesomedecisionin theirhealthcarewithanyotherillnesstheydo. AliciaMarieCampanellaTheinsensitiveteststhrough labCorpsandQuestleftmeundiagnosedforayear. Finallyaftergoingtoareputablelab,Itestedpositive onalmosteveryband,andIamstillbattlingchronic (ThatsrightCHRONIC)latestageneuroLyme borreliosis.WeneedpeopleonthepanelwhoareNOT influencedorpaidbyinsurancecompanies.Weneed theonesdoingthemostintensiveresearch,theoneson theFRONTLINESworkingwithrealLymepatientsevery daytocalltheshots.IDSA,yourguidelinesareflawed, basedonspeculationandignorance.Andbecauseof youwehaveanepidemicthatisnotbeing

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acknowledgedortreated.YOURGUIDELINESARETHIRD WORLDandthereareTHOUSANDSofpeoplewhoare abouttoriseup,holdsigns,marchtocongressand makethewholeworldawareofyourcrookedmotives. ThegigisupIDSA.TIMEFORACHANGE! GaryEngelmanTakealookatmyLymeDisease NationalRegistry.Recentlylaunched,butthesearethe numberstheCDCdoesn'thaveandtrustmewhenItell you10'softhousandsmorewillshowonthissite. Http://ldnr.us GaryEngelmanhttp://ldnr.us/LymeDiseaseNational Registry PaulaDavisAccuratetestingforLymedisease, IndependenttreatmentstudiedonLymediseaseaimed atacurenotjusttreatment.MEDICINEISINTENDEDTO HEAL....NOTJUSTMAKEMONEYSTREAMSFOR DOCTORSHOSPITALSANDLABS!Medicineis humanitariansocialsupportNOTamultibilliondollar enterprisebusiness......getbacktothethefoundations ofmedicineandtheHippocraticOath. KathleenDicksonIDSAneedstobeprosecutedto "makeanexampleoutofthem."TheBMJjust recommendedthis.IwonderifthisisIDSApretending tobehealthcarerepresentativesofsomesort,allofa sudden. KathleenDicksonForthelast15yearsallIDSA/ALDF haveeversaidisLymedoesnotcauseadisease. KathleenDicksonThatwouldbethereasonIDSAisnow unfunded.Theydon'tneedmoneytoresearchan infectionthatdoesn'tcauseanyillness. JackVandagriffJackVandagriffInterestinghowmy postsarecontinuallyremovedbecausetheycriticizethe ineptdoctorsthatallowedmydaughterandItorun throughthemedicalprofessionfor28painful, debilitatingyearsseekinghelp,gettingnone,having incorrectdiagnoseswhileallthewhiletheincompetent doctorstookwelloveronehundredthousanddollars fordoingabsolutelynothingofvalue.IDSAneedsto recognizethediseaseandseekatruediagnostictest andcure.Iventuretosaytherearesomeofuschronic Lymepatientswho,sadly,wishthatyouryoung daughterorgrandchildgetLymesoyoucanseethe sufferingandfinallybemotivatedtohelpinsteadof hindering.

JanisC.SommersTheISDAsplitshairsbetweenacute LymeinfectionandChronicSymptomaticResponses fromtheinitialLymeinfection/andmultipletickbites. ThisishowtheISDAiskeepingdownthediagnostic processandthisiswhatfuelstheoutragefromthoseof whoseliveshavebeensoalteredbytheinitial experienceoffindingthetickonourbodiesandsovery often,gettinglatediagnoses.Weareinagameof semanticsridingonanemotionalrollercoaster.Ithink theISDAismorematurethantoletthisgamecontinue. WhenwesaychronicLyme,wemightmeanchronic symptomsfromcoinfectionswhichmaybetreatable ifsomuchtimewasnotspentonthedenialof treatment,and/orpermanentphysiologicaldamage fromlongtermundiagnoseduntreatedbiteinfection. I'vehadhealthproblemsfrombothconditions. Benicertous,don'tdenyourrealities,andwemay actuallybeabletolistentowhatyouhavetosay withoutourrage.I'vetreatedmyselfwithdiet,detox cleanses,vitaminsandacupunctureandevery alternativeandcomplementarypracticethatIthought wouldhelpmefor16years,andcontinuetodothis,but 3yearsago,IsmartARNPreadmybloodworkand determinedIhadacoinfection(Babesiosis).Iwas treatedandIam85%strongerandmorefunctional.So simple.AndforalltheotheryearsIwassosick,my Lymetestsdidnotshow'enough'barsfortheCDCto allowforaLymediagnosis.But,theyalsoneverallowed foranythingelsetobegoingonsoinsurancewouldnot havecoveredthethousandsofdollarsofantibiotic treatmentsevenifIhadagreedtothem16yearsago. Pleaseopenyoureyesandstopbeingsonarrow. LeslieBoswellFarrellAnswersformychildrenastowhy theyaresosickandarenotgettingbetter.Whythey cannotthink,playsports,date,drive,finishschool,go toprom,gotofootballgames,havefun,planforcollege andhavealife.AnswersformyhusbandandIhowwe areevergoingtopayforallourbillsandeverconsidera whateverlifeforourchildrenifwearenotaround. Whatisourfuture?Whatplansdoyouhaveforfuture researchinLymeDiseaseandcoinfectionswhenyou donotevenmentionitatyourconventions?Whyisthis diseasebeingignored?Andifyouthinkthereisnosuch thingasChronicLymeDiseasethenWhattheHeckisit? NeilHueyStandingovationtoyouJanisasyouhavehit thenailonthehead.Somuchreliesonsemanticsinthis rathercomplicateddiscussion!Insteadofusingthe wordLymeconsiderusingtickbornediseaseandthat mayfostermoreeffectivedialogue.

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LaurieRosenbloomGottliebBettertreatment guidelinesforvectorborneinfectionsinadditionto bettertesting.Iwouldalsolikerecommendationsto testforseveralvectorborneinfectionsinadditionto Borrelia. WandaCooleyTheTruthisgoingtowinandyouare notgoingtobeonthewinningside.Ihavegreat compassionforwhatthisTeamwillsufferAFTER. MichelleMurphyAtleastlistenwithanopenmindto ILADSandhearwhatweareallsaying.Readallthe researchnotjusttheonesthatvalidateyourown opinion. EdelineHubregtseI'vehadsymptomssinceIwas4 yearsold.I'm51now.Lifeishell.Andallthe70doctors Ihaveseeninmylifemisdiagnosedit.Theystillwon't treatme.SoI'mtreatingmyself.Andmyfamilie. Gettingbetterstepbystep.Studiedherbs,mushrooms, psychologie,nutrition,environmentandnowmicro biologie.I'mworkingonitandgettingcloser.Please prayformeandalltheotherscientists,tofinda definiteanswertothesehorrendouspatogenes. ChristineKellerLymeFolks,Pleasepostyour state/countryoforigin.WeneedtheIDSAtorecognize thisasanationaloutcryforjustice,andtoseethisisnot anisolatedgroup. JerryLeonardTheLymeDiseaseEpidemic:CDC TuskegeeExperiment,PhaseII http://www.publichealthalert.org/Articles/miscellaneou s/tuskeegee%202.pdf 'Asaresultoftheuseoftreatmentguidelinestodeny treatment,Americasmostegregiousexampleof medicalmalpracticethroughtreatmentdenialisnowan everydayreality,conductedonagrandscale,andrun withthecomplicityoftheCDCandotherpublic agencies,whichareexploitingthepublicinsteadof protectingthem.Ihavereferredtothisasthe institutionalizationoftheTuskegeeExperiment.' ChristineKellerMaine,weherewithoutproper diagnosisandtreatmentlikentheIDSAtoHitler,itisa faircomparisonasyouarewillinglycommittingmurder andlifedestructiontothousandsuponthousands.You havenoright,itneedstostopnow,andyouallneedto FIXthisimmediately!IINSIST!

KimSwannKingChristine,goodidea,weallneedto postwherewecontractedthedisease.MyMomwho haschronicLymedisease,livesintheUSA/Piedmont TriadareaofNC SusanSpicuzzaGrayThisdiseasehastakenovermy wholelife.Yes...itisatruediseaseandpleasedo somethingaboutthis.Pleasehelpusfindacure BradLinbergIncreasedawarenessandeducationfor physiciansandforstudentsthatwillsomedaybecome physicianswouldbewelcome.Besidesaselectfew, manydoctorsI'veencounteredovertheyearshaveno ideachronicLymeexists.Themorewhoareawarethe better.After4yearsofsufferingfromchronicLymeand severalcoinfections,Inowatleastknowapathof treatment. YemayaTheresavonAntropoffWhileyousittherein yourignorance&denythatChronicLateStageLyme Diseasesexists.Ihavebeenfightingformylifeoreven tohavealifefor16yrs.10yrsofgoing undiagnosed/misdiagnosedgoingfromDoctorto DoctoronlytobetoldtherewasnothingwrongthatI wasstressed,fat,neededahobby,itwasjustavirus, etc,etc.Ipasseditontobothmychildrenages13&8 yrs.Doyouknowwhatitisliketowatchyourchildren suffer&notbeabletogetthempropermedical attention.Becauseofyourdenial&undereducationof LymeDisease&otherTickborneillnesses.Myfamily& countlessothersgoonsuffering.Righthereonthis threadyouhavethousands(Nottomentionthemany commentsyouerased)ofpeopletestifyingthatyouare wrong.WakeUp,GetYourHandsoutofYourWallet!!! RecognizethisDisease,&ChangetheLymeDisease Guidelines. LaurieDamsellFaheyRIPLeslieAnnWermersChronic LymeExistsandKills http://www.youtube.com/watch?v=NVsfGvZtLA JenniferDichiaroGrantIVantibioticsimprovedmy symptomshowevermyinsuranceonlypaidforone monthoftreatment.Ihavebeendeclininginhealth withoralantibiotictreatment.Pleaselisten...your guidlinesarepreventingmefromgettingthetreatment Ineed.IfIdieitwillbeyourfault!!!!!Pleasechangethe treatmentguidelinessothatchronicLymepatientscan getthetreatmenttheyneed.DOITNOW.Approvelong termIVantibiotics,hyperbaricoxygentreatment, hyperthermiaetcThesetreatmentscouldmakeahuge improvementinmyhealth.ThankYou

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KarenSmithIfanyotherdiseaselastmorethan6 monthsitisconsideredachroniccondition,butnotthis disease.Whyisityouadmitthattherearesymptoms thatcanlastmonthsorevenyearsafterthe30day treatmentofantibioticsbutyeteveryDrIhaveseen afterthat30daymarkhasrefusedtohelpmewith treatment.Theyonlywanttothrowantidepressantsat metellingmeIamdepressedandthatiswhyIhave chestpain,tingling,numbness,migraines,relentless jointpain,shinpain,blurredvision,fatigue,anxiety, heartirregularities,andmemoryissues(andtheseare justafew). Itissadwhenbecauseofyourguidelinesageneral doctororevenaspecialtyDrdoesnotwantaLymeptin thereoffice.Ihaveexperiencedthisfirsthand.Iama Registerednurseandwouldnothavebelievedanyof thisifIhadnotexperienceditfirsthand.Itisshameful!!! IchallengeyoutoproveuschronicLymevictimswrong! Thosewhomadetheguidelinestakethebiteofthe Lymeinfectedtickwithsomecoinfectionsanddeny yourselftreatmentforatleast6yearsandseehowthat 30daysofantibioticstreatsyourdisease!Ihave encounteredthefactthatIgetsickandcanbarelywalk whenIcomeoffanyantibiotic.Itmayhavenothealed meyet,butwhatoptiondoIhave??DoIfunctionon antibioticsordoIlayinbedandgetdenieddisability becausetheycan'tfindanythingelsewrongwithme andtheproblembeingthatthereisnochronicLymeso Ican'tgetdisabilityfortheonlythingIhavebeenCDC diagnosedforLymedisease.Shameonallofyoufor leavingthousandssuffer.WorktogetherwithILADSand figurethisout.Please!!! MoniqueDeRuggieroIDSAguidelinesaremisleading. Acknowledgethewiderangeofsymptoms(notjustrash andjointpain),thefactthat3weeksofantibioticswill notcureLyme,andencouragemedicaldoctorstotest forLymewhenevertheyseesymptomswithno apparentcause. KarenGoldenMyhusbandhasbeenterriblyillforthe pasttwoyears.Medicaldoctorscannotfindanything wrongwithhim.HetestedpositiveforLymediseasein thestatesbutcannotgettreatmentinCanadabecause yousaythistestisnotlegitamite.Pleasepleasehave anotherlookatLymediseasetestinganddiagnosing. Wecannotaffordtogetcostlytreatmentinthestates. Youareouronlyhopetohelphimgethislifeback.We onlyaskthatyoudoyourbesttohelpus.Thankyou!

LouiseAshbyTheIDSAguidelinesonLymediseaseand treatmentareworsethanuseless.Itismonstrousthat thissocietyhasputitselfinapositionwhereitis workingAGAINSTthehealthandwelfareofthepublic. DeniseOBrienChronicLymeisrealherein Massachusetts.IgotinfectedwithLymein2002.Inever gottreatmentthen.It'snow2012andstillhavenot receivedpropertreatment.Ineverreceivedany treatmentuntil2009whenIwasbedstricken.Ihave Lymeinallmyjointsthepainandarthritisis unbearable,Lymeisinmyheartandkidneys,it'sinmy nervesandinmybrain. IamoneoftheluckyLymepeoplewhoactuallyhavea fewdoctorsthatactually"BELIEVE"thatyoureallydo have"chronicLyme"andtheyfeelterribleforyou becauseyouarestuckincontroversialredtape.These doctorshavewatchedmegetworseovertheyears, haveseenmycrazysymptoms,haveseenmypain, watchedthisbacteriatakeovermybodyandmindat times,howsymptomschangeandthepainis overwhelming. Whathurtsthemostisthatthetreatmentisoutthere butinsurancecompanieswon'tpaybecauseofallthe controversy.Thisleavespeoplelikemeasinglemother whowasonceasuccessfulbusinesswoman......Sosick thatyouareunabletoworkbecauseyoumaynotbe abletowalkthatday.NotonlyamIsinglemothermy daughterisdisabledandhasdownsyndrome.I'mall shehas.Itmakesnosensetoallowpeopletogetsicker. Ineedatleast18monthsofivantibiotics.Ineedlonger treatment.90daysisnotenough.Ineedmebackand todebatechronicLymedoesnotexist.I'mlivingproof andIneedmytreatmenttogetwell.IfIdon'tgetwell WHOwilltakecareofmydaughterthereisnocurefor downsyndromethereisacureforLyme.PLEASE.My lifeandmydaughtersareinyourhands.Thankyoufor takingthetimetoread. ElizabethLeissnerIwouldliketoseeDr.Kempler explainincourthowdidhedrawtheconlcusionsinthe paper"TwoControlledTrialsofAntibioticTreatmentin PatientswithPersistentSymptomsandaHistoryof LymeDisease",inwhichtheIDSAguidelinesarebased. heisafraud! JulianaKingIwouldliketoseepeoplerespectedon here.Youaskedwhatyouwouldliketoseebutthen deleteourcomments?Lookatthenumberofresponses youhavereceivedthataloneshouldsaysomething.

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MarisaBorgTellmewhy,ifIdon'thave"Lymedisease BrittanyLymeAwareAgreedwitheveryoneelseabout orCoinfections,"Icanexercise,getoutofbedinthe your"take"onLymeDisease.Itisdefinitelynot"hardto morningagain,thinkclearly,nothavenumbness, catch"and"easytocure".I'vebeenbattlingitforthe tingling,painandahostofotherproblemsafterayear betterpartof7years.Misdiagnosedwithmanythings andahalfofantibiotics!Someofthemosteffective toldIwascrazy.Here'sthecrazypartthough,after antibioticsweredeniedbymyinsurance,causingusto findingsomeonetotreatmeappropriatelyI'mgetting spendthousandsofdollarsoutofpocketformyhealth. better.Iwilllikelyneverbecompletelynormalagain, Butnothankstoyourguidelines,Ibiked100milesthis howeverIamgratefulforthefewpainlessdaysIget. summer....Timeforyoualltofigureoutwhatyou're I'vebeencalledcrazy,ahypocondriac,adrugaddict,a missingsoinnocentadultsandchildrenstopsuffering liar,nuts...whenallalongIhadLymeandBartonella andbeingtoldtheyarecrazyandthatChronicLyme riddlingmybody.Pleaselookintotheresearchthathas doesn'texist!PeoplearegettingwellonILADS beendone.Talktopatients,listentopatients,doyour guidelines,notyours! ownstudiesandrealizeourcommunityisnotcrazy. ThisdiseaseisREALandDEVESTATINGandKILLING KathleenCrowleyBabineauIwouldliketoseeachange manylives. intheguidelines,sodoctorscanstarttreatingLyme withoutfear.Letusnothavetosufferanymore. KristenKelleyPleasechangeyourLymeDisease standards/protocolsandFACTSthatyouare KerryRousheyAllwewantisthe"proper"treatmentof misrepresenting!!SOmanyofusaresuffering Lymedisease..It'sallweeverwanted.Justachancein needlesslybecauseofyourbackdoorpoliticsand financialinterestsoftheboardmembers. helltohavesomesortofnormallifeandfeelalittle better..TheIDSAhasdonenothingbutstoodinour KellyPavelichThepoorhandlingoftheLymedisease way..Ihaveseensomanyfriendsdie..andothersjust situationbytheIDSAhasopenedtheeyesofthepublic wishingtheywould.Foronce,helpus.Icanassureyou, tothecorruptionwithin.Byyoursuppressingofvital noneofuswouldmindbeingguineapigsifyouwouldat informationyouhavewillfullyharmedthehealthofthe leasttry..andifnot,thentakeastepbacksoother publicnotjustnationwidebutinternationallyaswell! Doctorscantry.Whyhavewebeenleftbehind?What Becauseofthiswearenowseeingthebeginningofthe havewedonebadtodeservethishorribletreatment weallreceivefromyourInfectiousdiseaseDoctors?We endofmedicalselfgovernanceandgoodriddance! justwanttogetbetterlikeeveryoneelsewithanyother WhatIhopetoseethisyeararesolidlawslimitingyour disease..wejustwantachance. powerandthepowerofthecolleges. KristenKelleyUpstateNewYorkAlbanyarea HelenVromanIwouldlikeforarealreviewofyour policiesregardingtreatmentofchronictickborne TerryIngelsSuttonChangein infectionsasitdoesnot Ginny Coon Walcott Can't add anything policiesinregardstoLyme supportrealtimesituations. morethanwhathasalreadybeensaid diseaseandtreatmentof Youhaveastaggeringeffect Lymes. Whyisitthatpeople onthephysicianpopulation above.IshedtearsasIreadaboutthe whohavecontractedLymes attitudesthatdirectly destructionchronicLymehascausedme areoftenmissdiagnosedand impactspropercareand andthousands,ifnotmillions,ofothers. can'tgetpropertreatment. treatmentwiththoseofus sufferingfromtickborne InsurancedeniedtheuseofIVantibiotics Whyisitthatbecauseofyou infections.Youroathsaysto insurancecompaniesdon't forme...andsoIcontinuetosufferthe healnotharmandthereare coverLymesandwon'tpay ravages of chronic neuro Lyme disease. countlessofuswhohave fortreatment?Thereneeds Myprayersgoouttoallofus. beenharmedbecauseof tobeachange,anditneeds yourerroneousstance.I tobedoneNOW! dontunderstandwhyyou NicoleRandazzoHOWABOUTTHETRUTH?Iam woulddenytreatmenttothoseinneed,maybeyour shockedbytheamountofLIESandthelackofTRUTH researchdatabasesshouldmatchuptothosewhoare relatedtotheIDSALymeandrelatedcoinfection frontlinetickbornediseaseresearchers. guidelines.IfYOUarebittenbyatick,IpraythatYOU

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donotfollowyourownadvice.Youareharmingpeople withalltheliesandshouldbeheldaccountableforyour actions.MyfirsttickbitewaswhenIwas12yearsold andsinceIhavehaduntreatedLymesince1980andmy twochildrenalsohaveLyme.Wedidntknowituntil26 yearslater.WhenIwasbittenbya2ndtick7yearsagoI readallthewronginformationandwastoldthatsinceI didnothaveabullseyerashandtestednegativeIwas notgoingtogetsick.Well,thatwasabigLIE!2yearsof begging20differentLongIslanddoctorstohelpme,not oneofthemwouldtreatmebecauseofexactthesame reasonthatyouguidelinesareallLIES!Myvisitstoan ILADSLymeLiterateDoctor,30monthsofseveral differentcombinationsofantibioticsandIamnowwell. Ihavetherighttochoosemytreatmentanddecidefor myself.WeknowthedifferencebetweenYOUR conflictsofinterest,financialgainandOURhealthand wellbeing.Iamwellandwithabsolutelynothanksto theIDSA,AAN,CDCoranyofthedoctorswhodenied metreatment.ThemembersoftheIDSAshouldbein jailfortheirmistreatmentofLymepatientsandthe misinformationyouarepublishingaboutLymeandthe coinfectionsthatnotonlyDeerTickscangiveyou.If yougotowww.ILADS.org,youwillgettherealfactsand informationaboutLyme.IfIhadlistenedtoyour recommendations,Idstillbesick,ondisability,perhaps havenomemoryofwhoIamorsufferedaslowpainful deathfrommymusclenervesandjointsbeingattacked bybacteriathatcouldhavebeentreatablewiththe RIGHTcombinationsofantibiotic.ThankfullyWEare smarterthanYOUthinkandWEarespreadingthe TRUTHabouttheIDSA,AANandCDC.SHAMEONTHE IDSA! DebDanielsLerewIdon'teverremembergettingatick biteorseeingyourclassic"bulllseye"rash,butIcantell youtheexactdayandtimeIbeganhavingsymptoms June1,2008;10:30am.Myneckbeganhurtingsobadly Icouldbarelymovemyhead,Ibeganfeelinglight headed,andthenmyleftsidewentcompletelynumb onme.Iwalkedovertoachairtositdown,andIfeltas thoughIwerewalkingonrubberylegs.Iwaschecked forastroke;thankfullyitwasnot.OverthenextNINE MONTHS,Ienduredtestaftertestfromeverykindof doctoryoucanimagine,yes,eventwoLymedisease tests.Whenthosedoctorscouldn'tfindanything,they justattributedmysymptomstoamidlifecrisis,stress, anxiety,orjustadesireforattention,eventhoughmy familydoctorhadknownmeforyearsandknewI wasn'tthattypeofperson.WhenIfinallyconnected withaLymeliteratedoctorwhodiagnosedmeclinically withLyme,babesiaandehrlichia,andbegantreatingfor

thosetings,Ifinallygotatleastsomeofmylifeback.I amfinallytoapointwheremydiseaseisinremission, althoughIstillhavesymptomflares. WhatIwanttoseefromIDSA,andfromtheentire medicalcommunity,isanacknowledgementthatLyme isNOTeasilydiagnosed,doesNOThavecertainspecific toallsymptoms,andisNOTcompletelycuredwitha coupleweeksofantibiotics.Iwantdoctorstobe allowedtodiagnoseLymeclinicallyastheydowith otherdisease,suchasCFSorlupus,andtobeallowed touselongtermantibioticstotreattickborneillnesses withoutfearofbeingpunishedbyinsurancecompanies orreportedforabusingmedications.Iwanttosee awarenessraisedinthetreatmentandpreventionof LymeandotherTBIs.Really,isthattoomuchtoask? StephanieDeanSloanIwouldloveforguidelinesfor Lymedisease.....latestageorchronichoweveryouwant tonameitbeestablishedforphysiciansalloverthe UnitedStatestofollow.Letsgetridofpoliticsinour medicineandtrulybeatthisstealthbacteria!Letusget ridofconflictsofinterestinthisregardaswellwith boardmemberswhoserveonIDSAboard.Bestofluck andhopeyouwilllistentothoseofuswithlatestage Lymediseasetreatment. ChristineMcKeeverRylandAchangeinthecurrent guidelinesconcerningLymedisease.Toreallylookatall theresearchdone,LISTENtobothpatientsandthose medicalprofessionalswhohaveTREATEDthousandsof patients.Pleaesgetinstepwithwhatisreally happeningouttherewithtickborneillness.Ihopethis ismorethana'wishlist'butwillbea'reality' GinnyCoonWalcottCan'taddanythingmorethan whathasalreadybeensaidabove.IshedtearsasIread aboutthedestructionchronicLymehascausedmeand thousands,ifnotmillions,ofothers.Insurancedenied theuseofIVantibioticsforme...andsoIcontinueto suffertheravagesofchronicneuroLymedisease.My prayersgoouttoallofus. ShaunaMowersWhyareyouDELETINGpost?Myself andseveralothershavebeendeleted.Ijuststatedfacts andconcerns. SueAustinI'dlikeyoutofireyourselvesandsupportan indepentadvisorycommitteeasoutlinedinH.B.2557 andS.1381anunbiasedcommitteewithnoconflicts ofinterestandabroadrangeofscientificandmedical experiencewiththeinputofLDpatientstosincerely

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andurgentlyworktowardresearchintreatmentand diagnostictesting,education,accesstocare,and providefunding...I'dliketoseethemembersofthe IDSALymeadvisoryboardtoopenyourmindsaswide asyourwallets.I'dliketoinviteyouinsidemybodyand myheadtheonlycorrectthingdoctorsdenying chronicLymemayhavesaidthat'srightisitisinfactin myheadinmybrain. LDisnothardtocontractanditisnoteasytotreat butthesestatementsmightbeturnedaroundondayif properfundingandresearchallowsfortheresearchand educationnecessarytotreatthosealreadyinfectedand preventtheinfectioninothers.Itbreaksmyheartwhen Ihearofanotherpersoninfected.Ifyouareoneofthe doctorsorscientistswhobelievechronicLymedisease doesnotexistinfectyourselfwithatickcarrying Borrelia,Bartonell,Babesia,waitatleastayearfor treatment,andtakeashortcourseofantibiotics.Ifyou havethecognitiveabilitytoreportback,letmeknow howyou'redoing.Shameonyou,IDSA. WandaGolsanRecognizeLymedisease!! ShaunaMowersYousayyouareoursocietyandasked uswhatwewanted....butthenyouDELETEDourpost. WHY?Ifyouareoursocietyyoushouldlistentous. Pleasedon'tdeletehonestpost. RenattaSinclairWelshIhave2familymembers diagnosedandstrugglingwithChronicIllnessinthislast year.PleasegivemoreattentiontoLymeaswellasthe emergingdiseasecalledProtomyxzoaRhuematica. Thankyou. SueAustinCall,write,emailyourcongressmanand urgethemtocosponsorandsupportHouseBill2557 andSenateBill1381toestablishanindependent advisoryboard.Here'salinktomakeiteasyforyou: http://www.Lymedisease.org/news/Lyme_action_alerts /ldaalert.html POLITICALACTION:ContactCongressaboutthisLyme bill www.Lymedisease.org HelpsignupcosponsorsforHR2557. PatrickWylieKellyInvolvethetopLLMD'sin establishingguidelines.Beginningwithbettertesting andfightfornonlabcorpteststobecoveredby insurance.Workingwithdoctorsestablish comprehensivetreatmentguidelinesusingboth

pharmaceuticalandprovennaturaldietaryherbal methods. DeniseStGermain http://whatisLyme.com/restinpeace/ RestInPeace whatisLyme.com PeoplewhohavediedofLymeDisease DonnaSmithHemphillcontractedLymeinIrmo,SCin 2007,diagnosedCDCpositiveinMayof2009.Stillsick duetolackoftreatment.Insurancewon'tpayforLyme diseasetreatmentbeyond1month.Lookingfor respectfuldialoguebetweenthetwosocietiesand establishlessrestrictiveguidelinesthatwon'thinder ourdoctorsandopensthedoorforinsurance companiestopayfortreatment.Therearemany patientswithotherdiseasesthathavehadtofightfor treatment(cancer,HIV)beforeappropriatechanges weremade,wearenodifferent.Thedataisavailableto confirmvarioustreatmentwins,takethemseriously andchangeaccordingly.Thankyou. SuzanneLongmireWilliamsThetruthaboutLyme.Give patientsrespectandlistentothem.Donotrestrict treatmentstoanyone.Bepositive,thisisnotabattleto takesidesover.Thisisaboutthehealthandwellbeing ofPeople!Thankyou! JanetJensenRecommendationstoclinicallaboratories toreportintesnityvalueswithBorreliaELISAand WesternBlottestsandthenormalranges(asisdone withotherlaboratorytestreporting)asopposedto currentpracticeof"pos"or"neg",andinclusionofall WBbands.WouldliketoseeFDAorASTMestablishtest standardsagainstwhichcommercialkitscanbe validated. SharonPetrielloMeierSogoodtohearpeoplespeaking out!IhavebeensufferingwithChronicLymediseasefor over4yearsandithasbeendebilitating!Hastotally changedmyqualityoflife.....weneedsupport!! KimCohlmiaMusgrovePleaserecognizeLymedisease sopeoplecanreceivehelpthattheyneed. DebbieKushnerIn2012,IwouldliketoseetheIDSA focustheireffortsonLymediseaseanditsassociated coinfectionsspecificallyBabesiaandBartonella.Stop ignoringthegroupofpeoplethatDOsufferfrom chronicLymeandassociatedchronicinfections.Whilea

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vastmajorityofpeopledorecoverquicklyfromLyme, thereisasmallpercentagethatdon't.Pleasestop ignoringthepeoplethataresufferingwithchronic infections,yourignoranceisruininglives.Thereisa growingepidemicofLymeandassociatedcoinfections thistopicwasconsideredoneoftheTop25Under Reportedstoriesof2012,see#21inthelinkbelow. http://www.projectcensored.org/ JuliaBjerreItwouldseemtomebythesheervolumeof responses,theLymecommunityisnotreceivingthe propertreatmenttheyneedanddeserve.Iwonderif youpostedanotherquestionaskinghowmanylong termLymepatientshadrecoveredfollowingyour protocol,howmanypositiveresponsesyouwouldget? Whynotgiveit JuliaBjerreWhynotgiveitatry?Wearetellingyouthe currentprotocolsdonotwork....showustheydoby askingcuredpatientstopost. PhyllisShawMysisterwasbittenbyatickinApril2006. Aweeklatershegotsickandwasputon10daysof doxycycline,200mgdaily.Gotbetterbutthentwo monthslatershewasveryill.ByJulyshecouldhardly walk,wasinseverejointpainanddizziness.Shewentto about15doctorswhocouldfindnothingwrongwith her,thestandardlabtestsforLyme,LabCorp&Quest werenegative,Dr'stoldhershewasjustgettingold, hadmentalissues,etc.WefinallygothertoaLLMD. HerIGENIXtestswerehighlyIGMpositiveforLyme bandsnottestedontheWBtestsfromLabCorp& Quest.Shewasonantibioticsforninemonthsandgot well!!SomethingisterriblywrongwiththeISDA guidelines.IhaveseenmanypeoplegetWELLoncethey gottreatedbyaLLMD.DoingawaywiththeoldISDA treatmentguidelineswillsaveBILLIONSinSSdisability, medicare,unemploymentandwelfarebenefits.From theresearchitishighlyobviousthepeoplewhowilllose aretheISDAresearchers,Steere,Wormser,etal.What happenedto"DoNoHarm"?Plentyhavebeenharmed bytheISDAguidelinesandpersecutionofDoctors treatingChronicLymewithlongtermantibiotics. PhyllisShawPlusihavelostTWOfriendstoLymeinthe pastsixmonths.BothwerediagnosedwithALS,onlyto findoutlaterontheyactuallyhadlatestageLyme,too latefortheIVABXcure!EarlydiagnosisusingIGENIX andprompttreatmentbyaLLMDsaveslives. HeatherBrookinsYes,Pleasestarttryingtohelpsave peoplestartingwiththelabtestingforLyme.Maybe

youcanalsotryeducatingourmedicaldoctorswho knownothingaboutthisdisease.Recognizingthe researchthathasalreadybeendoneonLymedisease wouldalsobeagreatstarttothenewyear.Maybe afteryoureadallofthesecommentsyouwillalso discoverthatLymediseasehasbecomeapandemic acrossourcountryandisnotbeingtreatedassuch. PatrickMullenLymeisineverystate.Educate yourselves.Thesethousandsofsufferersarethereality. MaryDelisserandineveryprovinceinCanada DianaAllenIwouldlikeyourorganizationandour nation'sgovernmentalagenciesresponsibleforthe public'health'toacknowledgethetruethreatLD(and coinfections,ofcourse)posetotheUSAandworld. Onlythenwillwebeabletoberesponseableinmore honestlystatingthistruethreattonationalhealthand security.IwouldlikeTHISYEARIN2012tofinallyto seethelyingstopandthetruthbetoldabouteffective diagnostic&treatmentoptionsthatcouldsavelivesin thetreatmentofChronicLymeandcoinfections.Ifthe powersthatbeie:ourgovernment,insurance companiesandorganizationslikeyoursdonttellthe truthaboutthispandemic,suchentitieswillbetruly responsibleformillionsmoreneedlesscasesofhuman sufferinganddeath.Billionsofdollarscouldbemoved fromlobbyingagainstthisdisclosureintoresearchand servicestocareforandevenpossiblyHEALthemillions offolkswhosufferneedlesslyw/LD. DebbieKushnerPhyllisI'msorryyoulostfriendsto Lyme.I'vereadaboutLymebeingmisdiagnosedasALS. ThereisalsoagrowingepidemicofBartonella.Dr. EdwardBreitschwerdtofDukeUniversityrunsatesting facilitycalledGalaxyLabsthatisdoingsomeground breakingwork.Theproblemistoofewdoctorscheck forthecoinfectionsPLUSthetestsavailableinthe mainstreammarketaren'tcheckingforallofthestrains ofBartonellathatcrossoverthezoonoticbarrier.What amess. KellieLoerzelIwouldliketoseetheguidelinesforthe treatmentofLymediseasebechangedandour sufferingnoticed.In08afterbeingbitbyatickidid nothing.ittookonly4monthsformetogetvery seriouslyillwithexcruciatingpain,chestpain,tremors, shaking,headaches,vertigoandsoonandsoon.i believedandlistenedtomydrsherefortwoyearswho followedyourguidelinesonlytogetsickerandsicker andenduphospitalizedwithmeningitisandtoldi

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neededtogetmyhealthbetteroricoulddie.ibegan treatingwithoneofthebestllmdsandwithlongterm antibiotictreatmentandpicclineandIVsiamohso muchbetter.ifeelgreat.excepttheredtapeofthis diseasehasdestroyedmemorethanthediseaseitself. youcannotimaginehowwefeel,likeeverydayisthe worststomachbugyoueveryhad,theworstfluyou everhad,theworstmonoyoueverhad,theworst bloodpoisoningyoueverhad,theworstpain,andthe symptomsgoonandon.Youcantimagineitandsay thattreatmentislikeasugarpill.Thosefeelingsof sicknessaretotallydisablingandnoonepersoncould fakethemorpretendtheyexistandafternotknowfor 2yrsaboutLymethenhowcouldIhavefakedbeingill. Itsnotafewachesandpains,its2milliontimesthat. pleasedosomethingsoothersdonthavetogothrough whatidid.Andyesididtestpos4monthslaterandtwo yearsafterthat. JenSchulerPleasechangetheguidelinessothatLyme diseasecanbeadequatelydiagnosed,treatedand coveredbyinsurance.Itisabsolutelytragicthat childrenandadultssuffersomuchpainanddisruption tonormallifewithsuchadifficultroadtogettingany sortofhelpatallwhenanswerscouldactuallybe available.Nochildshouldbelefttosufferinthisway becauseofflawedguidelines. JerryLeonardwhyaremorethan20%oftheIDSALyme Guidelineauthorsbiowarfareresearchers? https://sites.google.com/site/jerryleonard999/home/w hatswrongwiththispicture What'sWrongWithThisPicture?winstonsmithspeaks sites.google.com medicalethicsandhumanexperimentation KenHessTheTRUTHaboutchronictickdisease,iethat itEXISTSandisdisablingthousandsofpeople.Updated guidelinesonhowtotreatchronictickbourneillness, includingthepossibilityofyearsworthofantibiotics andantimicrobials.Recognitionthatitmaybethe underlyingcauseofmanychronicillnessessuchasCFS, FM,MSetc.C.Hess(alongtimesuffereroftickdisease bitteninchildhoodanduntreatedfordecadesnow seeingaLymeliterateMD) TeresaWilliamsYoungIwanttosayalotofthingsto yourorganization,butI'llsumitupwiththis:youhave allsoldouttobigPharma...notsurehowyoucansleep atnight.ChronicLymeDisease&it'srelatedtickborne infectionsDOEXIST,theyDOKILL&MAME,theyARE RUININGPEOPLE'SLIVES.Pleaseacknowledgethis&

stopallthemisleadingguidelines.Youknowthetruth. Stopallowingmoney&greedtoshieldyourvision. Pleasedotherightthinghere&GETHELPtothoseofus whoaresufferingfromthisdebilitatingillness.Ialso praynoneofyouevergetbitbyatick&getLyme,asI wouldn'twishthisonanyone. PatsySwinsonYoushouldbewonderingwhythemost knowledgeabledoctorsonLymeDiseasearenoteven InfectiousDiseaseSpecialists.Thatshouldtellyou something.There'sagrowingepidemicofLyme Disease,whichisaninfectiousdisease,andyet infectiousdisease"specialists"knowlessaboutitthan manyofuswhohavenomedicaltrainingatall.That shouldconcernyou.Theevidenceisabundantand undeniable.Whyaren'tyouembarrassedthatpeople aredyingwhoyourspecialtycouldbehelping?Itis shamefulanddisgustingthatyourignorance,special interests,andprideismoreimportanttoyouthan people'sLIVES.Youhavenoconscience. DebbieKushnerIn2012,pleaseconsideragreater focusonBartonella.Thisbacterialinfectionisunder diagnosedandundertreated.ItisNOTtreatedbythe sameantibioticsthattreatLyme,butCANbetreated concurrently.BartonellaisNOTselflimitinginALL people,especiallythosewithotherinfectionsand reducedimmunesystems. JillWallaceObviously,therearesomanytragicstories ofpeoplesufferingneedlesslywithLymeDiseaseand coinfections.AlthoughIdonothavethishorrific disease,Ilivewithiteverysingleday.Itisnotjustthe peoplecarryingthediseasewhosuffer...thoseofus wholoveandcareforsomeonewiththisdiseasealso sufferimmensely.Therearenowordstodescribehow helplesswefeelwatchingourlovedonesgothroughso manyhorribledays...Thecasesareunderreported becauseofmisdiagnosis,politics,etc...but,Icantellyou thattensofthousandsofusareaffectedbythisdisease. Pleasedotheresearchandfindacure;inthe meantime,pleaseupdateyourguidelinestoallow doctorstotreatthisillnessandreducethesufferingfor allaffected. LarryBetsonAnhonestevaluationofLymediseaseand thetreatmentforchronicLymedisease.Myselfand manypeopleIknowhavesufferedwiththisterrible diseaseforaverylongtime...it'sepidemicandnotin ourheads.

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LenaElmi'vebattledLymeforseveralyears,tested positive,metthestrictestCDCcriteriaforcase surveillance(bullseyerash)andclinicalfindingsstill ignoredandabusedforyears.forlackofphysician education,andlackofresearch,insufficienttreatment withINEFFECTIVEDRUGSandtheCoverup,theresultof it.IHAVEALZHEIMER"Satyearsold...whendoyou stopservingyourowninterest,andserveus?the millionsofussufferingbattlingLymeandourchildren, andthehundredsofthousandsthat'llbecomeinfected eachyear!!!Wheresyourconscience?areyoueven human?Shameonyou!!!,howcanyoudothistothe millionsofus...standingbywatchingussufferingand dyingslowly...oryou'rejustneglectingusbecauseyou knowofTRAUB'sinventionthatleftmillionsofus victimsofBiowarfare...stepuptotheplateforONCE anddotherightthing...Helpus!!!Youwouldn'tbe abletowalkinourshoesforamileletalonealifetime ...WARNING:whoeverisreadingthispress,LYME CAUSEDMYALZHEIMER"Swhatsupposedlytheycall ALZHEIMER...IDSAhearourpleasforonce!! SimoHegerUntersttzung!!! AnnaMariaCastelloBarracoIwouldlikeyoutotakea lookateveryoneofthesecommentsandrealizethat eachofthemrepresentarealpersonwhoselifehas beendestroyedbyLyme;Thatwehavebeendenied treatment,mockedbydoctors,andcalledcrazy.It's timeforIDSAandthemajorityofdoctorstogetofftheir pedestalsandstoplookingdownonuslikewedon't knowwhatwe'retalkingabout.Iworkedasamedical assistantfor10years.Iknowexactlyhowdoctorsreact. Whenan"informed"patientleavestheofficethe doctorscoffsandcursestheinternetforproviding informationtopatients.IDSAneedtoadmitthatthey arenotinfallible.Itisdisgustingthatwithallofthe provencorrectinformationouttherethatthesedoctors can'tadmitthattheyhavemoretolearn.Wasn'titonly 100orsoyearsagothatthemostcommontreatment fordiseaseswas"bleeding"?Themedicalandscientific fieldsareeverchanging.It'shorrificthatthepatients willbetheoneswhosufferanddieneedlesslywhilethe doctors,insurancecompanies,andthegovernment standtherewiththeirfingersintheirearsliketantrum throwingtoddlerswhorefusetolistentoreason. PumaOfThenorthUntiltheCDCaswellastheIDSA adapttruthfulguidelinesforLymediseasetheyare harmingthepeopleoftheUSAdaily.Notbeingableto receiveatruthfuldiagnosiswhengravelyillcandestroy

livesbankaccountsrelationships&insomecasesbe fatal.NotonlyaretheirmisleadingguidelinesforLyme disease&coinfectionsusedintheUSAtheyareusedin othercountriesaswell.Thistravestyisclearlyabuseon thepartofthepeoplelikeWormser&Shapirothat knowbetteryetallowtheseliestocontinuefortheir ownpervertedfinancialgain.Ipraythatonedaythis insanitywillend. It'sreallyawonderthatIhaven'tdroppedallmy ideals,becausetheyseemsoabsurd...YetIkeepthem, becauseinspiteofeverythingIstillbelievethatpeople arereallygoodatheart.Isimplycan'tbuildmyhopes onafoundationofconfusion,misery,anddeath...and yet...Ithink...thiscrueltywillend,andthatpeaceand tranquilitywillreturnagain. AnneFrank CarolPayneOfficialrecognitionofChronicLyme Diseaseandmoreresearchanddoctorswhoknowhow totreatit. NeilHueyItrustthispostwillnotberemovedasitis availableunderthefreedomofpublicinformationact. TheantitrustinvestigationoftheISDAbyConnecticut StateAttorneyGeneral...(whichwassettledoutof courtforthepromiseofconsiderationofallavailable scientificdataofmeritandtoconveneanewand independentpanel)...beganinmid2006andconcluded April22,2010whenthenewISDAReviewPanel concluded..."Guidelinesarenotintendedtobe(and cannotbe)rigiddicta,inflexiblerules,orrequirements ofpractice.46GonzagaLawReview,117,Jan31,2011, UnprecedentedAntitrustInvestigationintotheLyme DiseaseTreatmentGuidelinesDevelopmentProcess. JuneWhiteheadwearesickandangrywhywontyou helpus!Whyareyoulettingchildrensufferanddie??? SusanReifLISTENtoallthecommentspostedhereand takeactionNOW.Actiontowardswhatisactually happeningwithvectorbornediseasesinoursociety. Nobodywilladmitthatwehaveapandemicrighthere intheU.S.rightnowwithLymeDisease.Peopleare havinglongtermillnesses,YESthereislatestageLyme Disease.Babesiaisinvadingourbloodsupply,how severedoesithavetoget??Ican'tunderstandthe IDSA'singnorancethathasexisted,andcontinuesto exist.Justfollowallthedigitaldatathatisflowingtoday itwilltellyouthetruestateofyourcitizens.All governmentagenciesthataddressdiseaseneedtostep upanddosomething,IfinditironicthattheU.S. AgnecyforInternationalDevelopment(USAID)is

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MariaAngelesGmizMaillettReviewyourguidelines fundingresearchtomapworldwideanimaldisease fortestingandtreatmentofLymediseasesoDr'scan outbreaksthatmightthreatenhumanbeings,whenwe followtherighttreatmentbeforeit'stoolate. alredayhaveanoutbreakonoursoil.Wehaveseriously illAmericansthataresufferinginallstates!!Yes,Lyme KellyMairsonDeleted:( diseasedoesexistinCaliforniaIamgoingon20years. AndIwassupernice AngieRowellMilesMooreOfficialrecognitionof MichelleFreyHellenbrandLYMEdiseaseanditsco ChronicLymeDiseaseandallowmoredoctorstolearn infectionsarechroniclongtermillness.Finally andtreatthisEpidemic!!!!!!!itisverysadthatwelive diagnosedinJulyof2011.Beenmisdiagnosedfor intheGreatCountryoftheUSAbutcantgettreated almost2decades.Passedtobothofmydaughterswhile properlyforLymes... pregnant. BobbyjoeHollidaywhateverhappenedtotheC.D.C. MichelleFreyHellenbrandOWNuptoyourmistakes! studyofMorgellonsDiseasethatwasfinishedyearsago &theyaresilentstill,cananyoneanswerthisoristheir RecognizeTBIforwhattheyare.FUNDtheresearch, corruptioninourGovernmentagency'sthatshownow bringAWARENESS!Getbehindusandsupportus! responsiblytoit'speopleofaCountrywhereweare supposedtobefree,whereisthefreedomweare BillieHensleyBrooksHelptogetLymeDisease supposedtohaveIaskallofyou????? recognizedbytheCDC. CheriClarkIwouldlikeChronicLymeDiseasetobe JoniComstock ~~~Pleasehelpthosewhosufferfrom acceptedasreal.NoteveryonewhohasLymedisease LYMEdisease&M.E.WeNEEDmoreresearch,more everhadantibioticscausetheydidn'tknowtheyhad sensitivetests,educationforhealthcareprofessional& beenbittenor,likeme,IwasinCaliforniainthe70's thepublic,bettertreatment&aCURE! anddidn'tthinktherewasLymeinthetickthatbitme andnevergotarash.Finallyin2009,awiseDr.tooka ShaunaMowersPleasestartactingforthegoodofus bloodtest,nowIamonlowdoselongtermantibiotics ratherthantheharm....educatetheIDdoctorsto andgettingbetter.Pleasebeopentoreevaluatingyour identifyandtreatLymeDiseaseearlyon.Mydaughter labprotocolsfordetectingborrealisintheblood! wentto3differentIDdoctorswhoallinsistedshe couldn'tpossiblyhaveLymebecauseiteitherdidnot BobbyjoeHollidaywhereistheJusticeweareentitledI existinCAorshehadalreadybeenonantibioticsfora ask? monthandshouldbewell.WehadoneIDdoceven refusetoseeherbecausewe MichelleFrey HellenbrandLYMEdisease saidshehadLyme.My PhyllisShawDebbie,very anditscoinfectionsarechroniclong interestingnewinfoon daughterhashadwellover Bartonella,Iamawareitcan $200,000inmedicalbills termillness.FinallydiagnosedinJulyof betreatedwithRifampin,etc. becauseshewasnot 2011.Beenmisdiagnosedforalmost2 Alsothereareherbal diagnosedforoverayear.If decades. Passed to both of my daughters formulationsthathave shewouldhavebeen helpedsomebartonella diagnosedwhenshewasfirst whilepregnant. sick, notonlywouldithave sufferers.Asyousay,itsnot savedmoney....itwouldhave justLymeitsthecoinfections savedherlife.Shehasnolife andconfectiontestingis rightnow...notevenabletoattendschool.Shecan't notoriouslyunreliableformanyreasons. evengetoutofthehousemostdays....nolifefora teenager,oranyone. BobbyjoeHollidaythisCountrytalksabouttheunjustly thingsofotherCountry's&deniesit'sownpeoplethe justicewealldeserve,whatHippocrites!! PennyTaylorRecognitionofLymeinTexasbyTexas doctorsandtheireducationandsupportbytheTMBto treatthethousandsofTexanssufferingfromLyme DebbieKushnerPhyllisIamtakingRifabutinrather Diseaseandcoinfections.Liveshavebeenlost,wasted, thanRifampinb/cithaslessissueswithsideeffects. andarenotevenproperlydiagnosedbecausedthis Addedbonus,itgivesyourskinalovelyglow!

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greatimitatorLymeDiseaseisnotrecognizedherein Texas.AndIshouldknowbecauseweareafamilyof3 thathavebeeninfectedandsufferedgreatlyboth physicallyandfinancially. DianeJ.MarieWhenachildoranadultcontractLyme disease,ithasbeenthemissionoftheIDSAandnearly everyinfectiousdiseasedoctorinthecountrytomake surethattheycausethatpatienttodevelopCHRONIC Lymedisease,ahorrible,frighteningandinvarying degreesdebilitatingillness.AndhereonFacebook,the IDSAhasthegalltoask,"Whatwouldyouliketosee fromyoursocietyinthecomingyear? DianeJ.MarieHere'swhatIwouldliketoseeinthe comingyear:STOPIDSACORRUPTIONANDLETLYME PATIENTSOBTAINTREATMENTTHATISKNOWNTO HELPTHEM.KIDSANDCHILDRENCANDIEFROM CHRONICLYME. EmilyMowersBetterguidelinesandtreatment availableforLymediseasepatients. RobertPierceAcollaborationbetweenIDSAandILADS. LindaMarottaMcGeeDon'tknowwheretobegin.....I willstartwithTHECHALLENGE.Iwouldliketochallenge everyIDSAdoctorwhohassaidthereisnosuchthingas chronicLymediseaseandhavemadeguidelinesmaking itimpossiblefordoctorstotreatLymewithoutfearand insurancecompaniestopayfortreatmenttotakemy challenge.Ifyouaresosurethereisnosuchthingas ChronicLymethenareyouwillingtoinjectyourselfora lovedonewiththebacteriaofaninfectedtick,co infectionsandall,waituntilitgetstostagethree disseminated,thenjusttake21daysofantibioticsand seehowyoufeel.It'snotgonnabepretty!!! SinceIwasdiagnosed8yearsago,thisdiseasehas emptiedoutoursavingsaccountbecauseinsurancedid notpayformytreatmentordoctorsappointments.It hasdestroyedmyfamilieslivesaswellassomany lives!!!!!Thisismystory....Ihavehadvariousmedical issuessinceIwas5andlivedinanepidemicareaofMA. Myparentspulledticksoffmeallthetime.Thatiswhen shesaidmywholepersonalitychanged.Allmyadult life,Ihavelivedwithmedicalissuesandnodoctors couldfindanythingwronguntil8yearsagowhenI movedtoLeesburg,VA(nowNorthernVirginiaisno.3 inthecountryforLymecases).Ididthegardeningatmy home,neversawatickorhadabullseyerash,just becameillforabout18monthsandmydoctorcouldn't

figureitout.Finallyendedupinthehospitalwithwhite bloodcellsa2,infectionsinmyspinalfluid,loosingmy sight,musclespasms,lightheadedanddidnothave enoughstrengthtogetoutofbed.GUESSWHAT, WESTERNBLOTCAMEOUTNEGATIVE!!!!Thank goodnessforaninfectiousdiseasedoctorwhotreated mewithIVantibioticswithoutapositive. DuringthetreatmentIwenttoseeoneofthetopLyme Literatedoctorsintheworld.Dr.BernardRaxlen.When hesentmybloodtoIgenXlab,GUESSWHAT,IWAS8 BANDSPOSITIVEANDHAD2COINFECTIONS.Ittookme 2yearstogetbetter.IwasdoingOK,butyoucan'tever forgetyouhaveLyme.Idid.Ipusheditteaching40 hoursaweekandtakingcareofmy3childrenand home.Startedtofeelbadbutignoreditandthenended upwitharelapsethatcausedapermanentheart arrhythmia.Ican'tworkandfinanciallyithas completelydrainedus.WHENWILLTHISEND,WHEN WILLINSURANCESTARTTOPAY,WHATDOWEHAVE TODO? RachelAndrewsBrakelDearIDSAPleasedosome researchonChronicLymedisease(andshareitwith yourmemberdoctors!).Thereismorethanenough evidencetosupportit'sexistenceandseverity;youjust choosetoignoretheevidenceinthenameofegoand money.Yourpatients'livesaremoreimportantthan that.Pleasewakeupandrecognizeallofuswhoneed help.3ofour5familymembersarecurrentlybeing treatedforLyme,includingourpoorprecious4yearold whomostlikelycontracteditfromme.Wehavehad numerousdoctorsovertheyearsofgoingthroughthis telluswewerecrazy,etc.Mostlymyhusband,whowas alwaysastrongandhealthyathlete. Inhislate20shewasreducedtolyinginbedforendless monthswithamysterydiseasethatnoneofthe20+ doctorswesawcouldidentify.Thankfullyweheard aboutLymethroughafamilymember.Wewereableto researchitandfindcompetentdoctorstohelphim.3 yearslater,heisstillbattling.But...heisalive,andwe're sothankfulforthat.HadwenotresearchedLymeon ourownandsoughtappropriatetreatment,Ihaveno doubtthathewouldnolongerbewithus.Pleasewake upandreachouttohelpfamilieslikeourswhoare livinginthetrencheswiththishorrendousdisease.My husbandespeciallycouldhaveenduredmuchless sufferingifanyofthefirst20+doctorshesawcould haveidentifiedwhatwascausinghimsomuchharm. Youaskedwhatwewouldliketosee,andwe're answering.I'venoticedthatthevastmajorityofpeople

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answeringthisquestionarebeggingforsomelegitimacy concerningLymedisease.Pleasestepuptotheplate. Thankyou. AnnaSillimanAftertwoyearsonoralantibioticsIam finallyrecoveringmyhealthaftermanyyearsof suffering.ItseemsIhavebothLymeandbartonella.My advicetotheIDSAis:getsomereality.Lookatthegood sciencethatcontradictsyourstance.Learnaboutthe successesofLLMD's.Oncebettertestingbecomes available,thetruthwillbeknownandwhatyouare doingwillgodownastheworstcrimeinmedical history. KristinWhiteSlyeForIDSAtotakeLymeseriouslyand considerthefacts. LucinaBotondIwouldliketoseeyouincludeinthe reevaluationofyourguidelinesonLymeDiseasethe expertiseofdoctorswhotreatchronicLymeDiseaseon aregularbasis. PhyllisShawPennyTaylorAmen,yesfamilyhastogo outofstatefortreatment!JointheTXLDAifyouhaven't already. MelissaRascioIwouldlikeforallofthedoctorstreating LymebasedonIDSAGuidelinestolosetheirmedical licensesduetomalpractice.Theycouldhavetreatedus, butchosenottoo!WhereareyourresponsesIDSA!?!? ShelleySenkbeilTruthandhelpforallLymepatientsin America.AcknowledgementthatchronicLymeisREAL!! CrisVenosaRecognizeChronicLymeDiseaseand changeyourguidelines!!!! BrittanyReeveHereinBoise,Idahowewantyouto recognizeChronicLymeDiseaseandchangeyour guidelines!!! AlExI'mnotgoingtobanteronabouthowChronic LymeisanabsoluteorabouthowyourtheoryofaPost LymeSyndromeisanabsolute.Theresimplyisnot enoughresearchiseitherdirectiontoconclusively supporteithertheory. Asidefromdoingmoreresearch,theresponsiblething todoisforyourorganizationtoreviseitsguidelinesto befarmoreflexible.Makethemguidelines,sotospeak; ratherthanalistofstrictruleswherestateboards

crucifyMD'sfornotfollowingthemtoatee.Letdoctors practicemedicineagain. Mytwoprimaryconcerns: Theefficacyoflongtermantibiotics:I'veseenitwork. Attheveryleast,allowtheprimarycareproviderto considerthisformofTxonacasebycasebasis.Just becausewecannotfindtheSpirochetesdoesnotmean thattheyarenotthere.Ifthepatientgetsbetter, doesn'tthatprovideenoughevidencenottocompletely dismisstheefficacyofthisstyleoftreatment? Youremphasisondiagnostictests:theexistingtests arenotaccurate.ThediagnosisofLymeDiseaseshould bebasedprimarilyonclinicalfindings. Medicineisadynamicfield,obviously.There'salotof pathologicalmechanismsthatwestilldonotfully understand.Lymeisnoexception.Makingsuch stringentguidelinesiscounterproductivetomoving aheadandbeingprogressive.Doctorswenttomed schooltoo.Letthemusetheirclinicaljudgmentand decidewhat'sbestfortheirpatients. AnjaMaurerDearmembersoftheInfectiousDiseases SocietyofAmerica: EvenifyourLymeBorreliosisguidelinesarenot affectingmedirectly,theyaffectmeindirectly. IamfromGermanyandourguidelinesarebasedonthe IDSAonesandtheybringtremendoussufferingin Germanytoointermsofrefusalofappropriate therapybyclinicians,tonameonlyone.InGermanytoo chronicLymeisnegated,downplayedandignored.I thereforehopethatyouchangeyourguidelines accordingtotheneweststateofscience,thatyou recognizethechronicformofLymediseaseandthat youdiscardthe2weekantibiotictherapyasgold standard. Insteadtheclinicianstrainingshouldbestrengthened, researchmustbeacceleratedandthereamsofLyme patientsaroundtheworldmustfinallybeheardand takenseriously. NeilHueyWifewasdxw/ALS...nofamilialties,no environmentalorchemicalexposure,buttherewasa pathologicalpathway...abugbite,determinedmuch latertoprobablybeatickduetounexplainedrash. YearslaterpositiveforLyme,suspectedbabesiosis,

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barontella,ehrlichiosis.Aftermanyyearsoffightingfor herrightsasapatient(ironicasonetimeshewashead ofanICUandactingheadofCCU)fightinginsurance companiestogetpropercare,fightingsocialsecurity becauseofdisabilitydenial,butmostimportantly fightingforthedignityshedeserved...shepassedaway. Ittakesaunifiedmedicalcommunitytoadvance medicine. TonofaultoftheISDA,butbyunintended consequence,morephysicians(withthenecessary medicalintellect)wouldhavetreatedtickbornedisease ifitwerenotforfearoflicenserevocationbystate licensingboardsinitiatedinpartbypressurefrom insurancecompaniesbecausethephysicianswere outsideofexpertguidelines(whichcoincidentallymay beconvenientforsome).Iaskhowclearandprominent hasyourrecentdisclaimertothe2006guidelinesbeen made?...andIquotefromnewISDApanelApril22, 2010...."Guidelinesarenotintendedtobe(andcannot be)rigiddicta,inflexiblerules,orrequirementsof practice."46GonzagaLawReview117,Jan31,2011. Tosomethatmayberatherobvious. CarlTuttleTheonlinepetitionagainsttheIDSA membersLymediseasestudyhasgathered129 signaturesfromacrosstheUS,Canada,Germany,UK, Ireland,Belgium,France,andtheNetherlands.Please takeamomenttoreadwhypeoplearesigningthis petition. Therearenowsevenstateswhichhavepassed legislationtoprotectclinicianswhotreatlatestage Lymewithlongtermantibiotics(CT,RI,MA,MN,NY, NH,andTX)andtherearesupportgroupsinnearly everystatewithnineteeninPennsylvaniaalone. IftheIDSAandCDCgotitrightwiththeironesizefits alltreatmentapproachforallstagesofLymedisease andfaultytwotiertestalgorithmwhythendowehave thismuchlegislationinvolvingLymedisease? Petitionsite: http://www.change.org/petitions/subjective symptomsaftertreatmentofLymedisease CarlTuttle Hudson,NH Website: http://home.comcast.net/~runagain/site/?%2Fhome%2 F

StephanieVandagriffReally!?Itellmystoryandyou deletedit!WTF.Iwillretellmystorybecauseyoucan't silenceme.For20yearsmyfatherandIhavegone undiagnosed.Becauseofthis,mydadandIhave permanentdamage.Youhaverobbedmychildhoodand myyoungadultyearsfromme.I'mnowhousebound andI'monly30yearsold.Mydecisioninlifenowis decidingifIdosomethingnormalisitworthbeingsick foracoupleofweeksafter.Youhaverobbedmeofmy life.Ihopeyousleepwelltonight,atleastoneofus should. PhoebeKlemzyesterdaytherewere1,600+comments, nowitshows1,400.howmanyaretherereally? KaetheMitchellWhydoesyour"Recommendations" featureontherightofthisscreensaythereare22 recommendations,butonly6appearwhenIclick"See All"? TrishMcClearyIwouldliketoseetheIDSAallow educationtophysiciansfromorganizationsonthe frontlineswhoareresearchingandtreatingLyme diseaseandcoinfectionsassociated.Allowthe knowledgetoinfecttheIDSAsogoodcancometothe millionsaffectedbythisepidemic!It'stimetoallowthe changetohappenandfortheIDSAtobepartofthe solution... DebAndersonEastmanLetmeaddonemore!Iruna FacebookGroupcalledBeatingThyroidDiseasewith LDN,andIcannotbelievehowmanyfolksarefinding outtheyalsohaveLymeDisease!Howisthispossible? Areyouunderestimatingthenumberoffolkswiththis ScourgetoHumankind?I,foronewouldReallyliketo know! SusanSpicuzzaGrayWellsaidPatsySwinson!!!Whydo wehavetolearntotreatourselves?Weareallbroke fromtryingeveryremedieunderthesunbecausewe aresodesperatetobewell.Someofuscan'teven affordtoseeaDr.anymoreortryanotherpill.WAKE UP!!!Thisdiseaseisanepidemic.Whenwillyouopen youreyestothis?Willittakeoneofyourlovedonesto becomeasillasweallare.Findacurebeforethatdoes happen. MadisonLewisPleasestopdeletingthemosteducated andimportant,eyeopeningcommentsoftheseLyme Victims.it'stoolatetotrytokeepthe#of comments/hitsdown.Itonlymakesyourhandslook dirtierthantheyalreadyare.Wearecoveredbythe

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FreedomofInformationAct,andasfarasFBcriterium, thedeleteshavebeenmorethanacceptable. WandaStibitzIhaveneverbeentreatedsorudelybya doctor!Andnotevenknowingwhatacoinfectionto lymewas!!!!Itseemsthattheonlydoctorswhobelieve inaccuratelymetreatmentarethosethatare personallyaffected!Idonotwishthisonanyonebut maybesomeIDSAdocsshouldputthemselvesinalyme patient'sshoesbeforeithappenstothem!TheIDSA shouldhangtheirheadsinshame!!!Ihavenowbeen sufferingfor9yearsbecauseofanIDSAdoc's incompetency(&gettingbetterwithlongterm treatmentandtreatmentofcoinfectionstoo!)Wakeup beforeitgetsyou!!! MargieNoyesDonohueeliminatethedevastationof Lymediseasebyrecognizingitasalegitimatediagnosis MaryVirginiaWhatIdesirefromyourorganizationis acknowledgementoftheexistenceofChronicLyme diseaseandrecognitionofthedegreeofdebilitation thatitcausesitssufferers. ChristineHefferItooaminfectedwithLymeandco infectionschangesneedtobemadeinhowthis diseaseistreated TrishMcClearyForhelpwithLymegoto www.lymediseaseassociation.orgorILADS.org ShannonFisherIwouldlikenotonlythelegitimate recognitionofChronicLyme(anditsappropriatelong termantibioticandantiparasitictreatment)butalso addinginformationonthediagnosisandtreatmentof ChronicLymetothemandatorycurriculumfor continuingeducationofgeneralpractitioners, emergencyroomdoctors,rheumatologists, neurologists,internalmedicinespecialistsandof courseinfectiousdiseasespecialists. MollyCapAccuratetestingonLymeDiseaseandit'sco infectionsaswellasrealtreatmentsformainstream doctors.Pleasehelpus. SonnenScheinI'mfromGernmanyandIwantyouto changetheIDSAguidelines.Longertreatmentsand recognitionofchronicLymedisease.Wewantmore research! DebComptonVeneziaI'dliketoseebetterguidlines andtreatmentforeveryoneinneedofbetter,more

affordablehealthcare.I'dliketoseeyoutake ResponsibilityfortheFiascothatwecallMedicalCare! Manyaresufferingandintheyearof2012wecandoall kindsofmiraculousthings,butwecannothelpour countriesailinghealth?Itistimewedowhatisright, makingmoneyisn'ttheonlythingthatyoushouldbe concernedof,evenutallyyouwillbefacedonthe othersideofyourownguidelinesandyouwillbe treatedjustthesameasI,andothers. MyhealthproblemsbeganwhenIwasachild,we excusedthedifficultyfordiagnoseswiththetime,then early80's,butnowwhatistheexcuse?Havewereally learnednothing?Theretrulyismorequestionsthen answersandthatispartoftheproblem.Closeto30 yearslater,lotsofneglectandinsultsbyamedical communitythatpreferredinsultingapatientrather thantakingresponsibility..leftmebroke,withouta freedomtochoosethelifeIwantbecauseofthe diseasethatwasleftunattendedtowreakhavocwithin me.IwishIcouldforgetthisonemoment,butforsome reasonitistheonememorythathasstuck.Itwasa mentalpain,ratherthanmynowdailyphysicalpain. Iwasasmartstudent,Istruggled,butworkedsovery hardwithmystudiestosucceed.OnedayIsatinmy advancedalgebramathclassandstaredblanklyatmy test...fullyknowingICANdothis,butfeelingasif someonejusterasedmybrainclean...likechalkona chalkboardwipedaway.Thatdaymarkedmyfirst failedmathtestandmanyotheruntilIgaveupandquit school.Whymightyousay,wellbecauseNOonecared, doctorsdidn'tcare,andourfriendsandfamilyRespect thedoctorswordandsothentheybegantonotcareas mucheither.Iwasleftlost,justateenleftlostand confusedandbasicallyblamedforwhatwashappening asifIsuddenlybecameaLiarovernight? IttookanotheryearbeforeIwasdiagnosedwithLyme Disease,finallyaanswer,Ithought!Nownextisthe cure,YAY!Iwillovercomethis,butsadlythatdidn't happen...thingsgotworse;theworsemyhealthgot, themoreIfeltrejectedbymedicaldoctorsIwastaught totrustandrespect.Iknowlifeisn'talwaysfair,but pleaseunderstandwhatyourignoranceandgreedis doingtothelivesofsomany.Idon'tcareifyoucallitby someothernameordisease,Idon'tcareifyou manufactureditornotatthispointinmylife...allI wantisinsurancecoverageandaoppurtunityforthe choiceinmyownmedicalcare,withthedocofour choicewhocangivemetreatmentchoicesthatIcan acceptorchoosenottoo.Iwantmyrightsbackatleast, causeIdon'tthinkyoucangivemebackmyhealthor

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treatmentstoppedtheMSprocess.ButduetoMS theyearsstolenfromme,frommyfamily,myhusband damagedone,IremainonSocialSecurityDisability.All andson.IjustwantthefreedomweclaimAmerica becausetheIDSAandinfectiousdiseasedoctorsacross standsfor.FormysonnottoendurewhatIhave theUSwantustogetexpensivedrugswedon'tneed, enduredinmytimeandforustostandupandmake insteadofhighdose,veryprolongedantibioticswhichis ourwrongsright.WillyoudothatIDSA,willyoumake whatsavesourlivesandpreventsfurtherdisability. yourwrongs,right? Thereislittleprofitinantibiotics. Changetheguildelines,enforceinsurancecompaniesto TheIDSAisguiltyof"conflictsofinterest,"aswasfound coverpatientswhoPAYforinsurancetohelpthem byConnecticutAttorneyGeneralBlumenthal(nowaUS whentheymedicallyneedit.Itneveristolatetomake senator: thosechanges,evenifmytimeistoolate...thereisstill http://www.ct.gov/ag/cwp/view.asp?A=2795&Q=41428 thefutureofmyson'stime.Thisisjustatadofwhatmy experienceshavebeenlikedealingwithhealthcare. 4) WhatI'dlikeistoseeackowledgement,respect,andfor MaytheIDSALymeguidelinespanelmembersbe throwninprisonwheretheybelong.Lymepatientsare thoseguidelinestochangeforthebettermentofthe notgoingaway,we'reonlygettinglouderandgrowing Americansyouhavesworntotreatwithdignity. innumberasmoreofusbecomedisabledbychronic ThankYou. Lyme.Youcan'thideforever. KimberlyBoozerIjustwantLymetoberecognizedasa JamieGetemBoyPleasedosomethingaboutyourlyme seriousdisablingdiseaseandforDr'snottobelittleme guidelinesandseethatit's intothinkingONEpillwould Sarah Chappell My twin sister has Lyme notjustlymebutalsotheco workagainstadiseasethat disease.Ihavewatchedherdeteriorate hasravagedmybodynowfor infectionsnowthatcome 10plusyears(beforethey with italongwithparasites. overtheyearsandbecomeashellofa gavemethepillandIhadto Maybelymebyitselfisnotso humanbeing.IDSAnotonlyneedsto goto6differentDr'sbefore badbutit'swhenthe recognizetheseriousnessofthis theyeventestedme,which diagnosisismissedearlyand theyshouldhavedoneinthe youaddthecoinfectionsin epidemic,butyouneedto1)properly beginning)!!!Istillhaveallof themixit'sdebilitating.Then educatePHYSICIANSonthisdisease,2) thesamesymptomsandthey wecan'tgetthefinancial educatethePUBLIConpreventing areworsenow....yetIcannot helpweneedfromSocial gettreatment?Notfair,thatI contractionofthisdisease,and3) Security,eventhoughoutof workforoverayearbecause andothershavetosuffer, educateINSURANCEcompaniessothat oftheguidelinessayingitcan includingmanychildren,its ALLtreatmentsforthisdiseasecanbe betreated. ridiculous. affordable to everyone. Myhusbandhadworked DianeJ.MarieIt'shideous everydaysincehewas15and thattheIDSAwouldask, can'tgethisownmoneysowecanpayourbillsandfor "Whatwouldyouliketoseefromyoursocietyinthe comingyear?"THEIDSAMUSTSTOPDELIBERATELY histreatmentbecauseofthewayyourguidelinesmake DISABLINGANDKILLINGCHILDRENANDADULTSWITH ittobenobigdeal.Itis,heis31yearsoldwalkingwith LYMEDISEASE.NOW.Treatmentexiststogreatlyhelp acanedotopoortestingandlackofintelligenceinthe uswhenwegetappropriatetreatmentintime,using medicalcommunity,eventhedoctorswhodoknow theILADSway.WhydoestheIDSApreventusfrom aboutitwon'ttouchanyonewitha10footpolewho gettingtreatmentthatisappropriateusingtheILADS havelymeorcoinfectionsbecausetheyarescaredto way?ANswe:TheIDSAisanevilmedicalsocietythat deaththewillhavetheirlicensesuspended.Thereisno existsforonereason:profits.Profitsbeforepatients. onecureallforeveryonebutifyoucouldatleast respecthowdebilitatingthisissowecangetthe You'veallowedLymediseasetospreadworldwideand monetaryhelpweneed,wewouldhavelessstressand havehiddenthisrampantepidemic.ChronicLyme inturnhealfaster.Pleaseconsiderthisasawhole pictureoflymeandtheimmunedysfunctionitcan diseasecausedprogresiveMSinmebutitwascaused causewhenotherfactorsareinvolved.Alsoletthelyme byLymedisease.GettinggreatILADS(www.ilads.org)

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dxbemadeonaclinicallevelnot12stagebloodtest thatarenotaccurate.Ifmyhusbandcouldhavebeen treatedonhisprimary'sclinicaldxalonehewouldhave neverbeenoutofworkandnowinthestateheis whereheisnowhereneargoingbacktoworkdueto lackoftreatment.Thanksfortakingthetimetoread this. DebComptonVeneziaBythewaylaterinmy20'sIdid fightthroughtheconfusionandfogofwhatIenduredin highschoolandIgotmyGEDinmylater20'saftermy sonwasborn.IpassedfirsttimeandwasveryproudI achievedthat.Ifonlymyhealthdidn'tgetmuchworse, maybeifonlythesufferingLymewascausingmywas bringtreatedproperly,justmaybeIcouldofcontinued mylifewithfurtherschoolingandacareer.Nowmyif only....goalsaresimple.Ijustwanttocook,cleanand takeashowerwithoutfeelinglikeIamgoingtodie. Amazinghowourperspectiveanddreamschangewhen wearesuffering. StephanieVandagriffLetmeremindeverybodynotto swearorthreateninanyway,sotheycan'thavean excusetodeleteourposts.Let'smakeitwhenthey deleteus,it'sbecausethey'recensoringusanddon't wantustobeheard.Keeppostingpeople! SarahChappellMytwinsisterhasLymedisease.Ihave watchedherdeteriorateovertheyearsandbecomea shellofahumanbeing.IDSAnotonlyneedsto recognizetheseriousnessofthisepidemic,butyou needto1)properlyeducatePHYSICIANSonthisdisease, 2)educatethePUBLIConpreventingcontractionofthis disease,and3)educateINSURANCEcompaniessothat ALLtreatmentsforthisdiseasecanbeaffordableto everyone. MarysRainbowIwouldliketoseeyouacknowledge LYMEDISEASEandstarttheprocessofhelpingthose canadianswhoareaffected!!!!!!! ShellyOglineDehoffPleaseaddmetothelistfrom southeasternPAwhowanttoseeLymediseaseand tickbornecoinfectionsrecognizedandrespected,and treatedappropriately! NeilHueyToSarah...FACT...TheCDCisawareofthe epidemic,somesaypandemicnatureoftickborne diseaseinthiscountry.Putpressureonyourstate's departmentofhealthifyouwantaction.

MorganZazowLookintothepoliticsofthemembers whosaythereisonlysuchathingasacutelyme disease,andnotchroniclymedisease.Playdevil's advocatehearallsidesofthestoryandlookatallthe researchandalloftheinformation.Thendotheright thing. HeatherMacEachernTarasickIaswellwouldliketo seeyouacknowledgeLYMEDISEASEandstartthe processofhelpingCanadianswhoareaffected!!!!!!This diseaseisdestroyinglives! BorisBHoundleroyPleasehelptosavemydaughter fromLymediseaseratherthanfightingagainstthose whoaretryingtosaveher KennethDamsellliveuptothereoathandnotmeny frominsurancecototurntherebackonsickpeople JenJasperWow,peoplehavealottosayaboutLyme disease.Ido,too,butIhaveotherthingsIwanttoask about: Tensofthousandsofpeopleloselimbsanddieinthis countryeveryyearduetoantibioticresistantinfections peoplewhomayhaveachancetoliveandevenavoid therisksofthemorehepatotoxicandneurotoxic antibioticsusedifwehadaccesstophagetherapy.How canwebringphagetherapyclinicaltrialstotheUSand savepeople'slivesfromacuteMRSAandother infections?ThisIthinkisanissueforeveryoneinthe world. Youhavethisgoalofproducing10newantibioticsby 2020.Isthereanychanceoneoftheseantibioticsunder developmentcouldbeusedtomoreeffectivelytreat Lymedisease?Earlyandlatestage?AndbythatImean allgenospecies,asthereisevidencethatdifferent strainsrespondtodifferentantibiotics. LoriShaddyIwouldlovetoseeyouadmitthatLyme existsandstopthreateningdoctorswhotreatpatients withLymeDisease.Iwouldloveforeachofyoutofinda lovedoneorforyoutohaveatickbitesothatyoucan seewhattherealityofLymeDiseaseis,personally.That wouldcauseyoutoseeclearly,Iamcertain.Iwould loveforeachofyoutolive"UnderYourSkin"rather thansayitwasadramaticfilm.Lymeisaffectingpeople atafasterratethanAIDS.Itaffectsthebrainlike syphilis,butpeoplearedeniedtreatment.Now,Ibet youwishyouhadn'tasked.Wearepeople.Peoplewho

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wanthelp.Wedonotwantlawsuitsoranythingmore thandignity,respect,andtreatment! KathyObalCarlstromJenmanystrainsoflymeandco infectionshavebecomeprescriptionantibioticresistant. Naturalmedicinesworkbetterinthesecases. JenJasperIhavebeenwonderingafewthings,and wouldlikesomeanswers.BasedonsomethingI'veread elsewhere,I'mwondering: Ifyouthinkautoimmunityplaysaroleinposttreatment Lymediseasepersistingsymptoms,whyisitthatafter ananalysisofthestudiesonautoimmunity,therewas norelationshiptoautoimmunityfound?Toquotean NIHpaper: NationalInstituteofAllergyandInfectiousDiseases, NIH:ImpactonGlobalHealth(2009)byVassilSt. Georgiev,PhD Chapter22.1LymeDisease(LymeBorreliosis,Lyme Arthritis) Section22.1.5.4TheRoleofAutoimmuneReactivityin LymeDisease "InNIAIDsupportedclinicalstudies,casesubject patientswithPTCLD*werecomparedwithcontrol subjectswithoutsuchsymptomsforthepresenceof severalhumanleukocyteantigen(HLA)classII(DRB1 andDQB1)geneticmarkers,someofwhichareknown tobeassociatedwiththeexpressionofautoimmune reactivity.Theresultsobtaineddidnotsupportthe involvementofanautoimmunemechanisminPTCLD (24).However,becausenotallautoimmunediseases areassociatedwithspecificHLAhaplotypes,these findingsdonotnecessarilyexcludethatpossibility. Definitiveproofwouldclearlyinvolvedemonstrating thepresenceofsignificantlevelsofrelevant autoimmuneantibodiesand/orautoreactiveTcellsin patientswithPTCLDbutnotintreatedcontrolsubjects withoutsuchsymptoms.Agreaterfrequencyof DRB1*0401,whichhasbeenreportedtobeassociated withantibiotictreatmentresistantarthritis,wasnoted inthecasesubjectpatients;althoughthisfinding appearedtobenominallysignificant(p<0.05),its biologicalsignificanceisambiguousbecausenoneofthe casesubjectsconsideredhadsymptomsof inflammatoryarthritis. (http://www3.niaid.nih.gov/research/topics/lyme/resea rch/autoimmune/)"

IfHLADR4andothergeneticmarkersareimportantin determiningwhichpatientsstandtodeveloppersisting symptoms,Iwouldbemakingtestingforsuchmarkers partofyourguidelines.Iwouldappreciateitifinthe newyearyoudedicatedaportionofyourwebsiteto explainingtheevidenceyouhavesupportingany autoimmunebasisforchronicLymedisease.Alotof patientshaveneverseenasolidexplanationforthisat all.Andquiteanumberofpatientshavegottenbetter whilstonlongertermantibiotics. SusanHansonHaywoodPLEASEtakeLymedisease moreseriously.Wearesufferingdailyinhorrificways andneedhelp!!!!!!!!!! CourtneyLynnResearch,treatments,diagnostic tests,doctorsknowledgeofthediseaseandthe guidelinesareALLflawedconcerningchroniclyme disease.Itistimetodotherightthingandgetthese mothers,fathers,sisters,brothersandchildrenthecare thattheydeserve! JenJasperDarn,hit"return"tooearly.Imeantto includemore. IwanttoknowhowitisyouthinkLyme disease/Borreliosiscan'tpersistafterantibiotic treatment.IthoughtthatBorreliahasbeencultured fromACAskininEuropeadecadeafterinitialinfection andtreatment?Andwhycan'tithavealatentphase? EvenoneofthetestkitsforLymediseasestatesthat latentLymediseaseandseronegativeLymedisease exist,yetinotherdocumentationonlineyourposition statementhasbeenthatneitheroccur. FromZeusScientific'sAthenaMultiLyteBorreliaVlsE 1/pepC10PlusTestSystempackageinsert: "Spirochetemiaoccursearlywithwidespread disseminationthroughtissueandbodyfluids.Lyme diseaseoccursinstages,oftenwithinterveninglatent periodsandwithdifferentclinicalmanifestations." and "Asymptomaticsubclinicalinfectionispossibleand infectionmaynotbecomeclinicallyevidentuntilthe laterstages." and

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AthenaKernPleasechangeyourguidelinesonlyme "Patientsinearlystagesofinfectionmaynotproduce detectablelevelsofantibody.Also,earlyantibiotic diseasedetectionandtreatment.Thedoctorswhoare therapyafterEMmaydiminishorabrogategood openmindedandknowledgeableenoughto antibodyresponse.Somepatientsmaynevergenerate successfullyhelppeoplehavealsobecomeinfected detectableantibodylevels." themselvesorwhohavefamilyafflictedwiththese severelydebilitatingandharmfultickborneillnesses. ReadingthisfromaprofessionaluseinsertforaVlsE Andtheymustdosowhileriskingtheirlicensebecause theIDSArefusestohelplymediseasepeople.Thatis testwidelyusedbymanydoctors,onewouldthinkthat WRONG.HowlongdidittakeforAIDstobeaccepted anyissuesaboutlatency,subclinicalinfection,and andacknowledgedasaninfectiousdiseasenotjust seronegativeLymediseasewouldnotbecontroversial. afflictinggaypeople?Howlongafterthatdidittakefor ComingfromthissourceandnotacontroversialLLMD's researcherstoactivelyseekacure?Isitreallynecessary office,whatcanyousayaboutthis? togothroughallthesehoopsforeverymajorinfectious disease?!Whenyouknowinfectiousdiseaseiskilling MorganZazowThe"right"decisionstomakeare people,standupandhelp,don'tmakethingseven obviousenough.1,438andwewillnotstop.Mostofus harderforthosewhoaresick! havethetime,aswesitorlaybecausewecan'tdo anythingelse. JenJasperIDSA,Ithinkyouneedtodomoretoreach JenJasper @KathyObalCarlstrom:Pleasetellmewhat outtopatientsandhelptheminsomeconcreteway. Likemoreresearchontreatmentandpersistent theyare,I'dliketolearnmore.Thankyou. infectionandaplacewherepeoplecanregularlyask questionsandgetawellreasonedusefuland WendyHaywardHELPPeoplewithLYMEdisease!!!!!! informativeanswer.Anactualdialogue.Andhowabout REGOGNIZE,SUPPORT,HELPgettreatmentforthese tryingsomethingoutsidethebox?Whataboutclinical thesethousandsofpeoplewhohaveitsotheycanLIVE andbealivetohelpsupportandhelpthemanyof trialsofrituximabforthosewithseverefatiguerelated thousandsyettocome!!! tochronicLymedisease? MargaretMelson IwouldliketoseeIDSA Wouldyoutrytoseeif recognizelymeastheepidemicitis.I HeatherLynnFindand there'sahumanmodelof supportanaccuratetestfor immunityandgeneticswhich wouldlikeyoutodevelopaccurate lymeandvectorborne matchesHuber'smouse testing and helpful, effective treatments. diseases.Eliminatetheneed study? Iwouldlikecoinfectionstobe fordebatewithearly recongition,endingthe Becauseifso,youmightfind investigatedandaccurateandeffective suffering. that patientssufferfrom treatmentsdevelopedforthem.Iwould bothpersistentinfectionAND liketheIDSAtoquitactinglikepeople LisaChrismerHixIwouldlike adeficientimmunesystem. whohavelymearecrazy,depressed, toseeyouworktogether withILADSandthedoctors I bring all this up forserious psychosomatic....thelymespirocheteis whoarehelpingthoseofus closelyrelatedtosyphilus...youbelievein consideration.Likemany withchroniclymedisease.If peoplewhohavewritten treatingthat,don'tyou? herebeforeme,Ilostmy youdon'tworktogetherto abilitytoworkduetochronic gettheguidelineschangedso painanddisabilityafter thatwecangetinsuranceto havingbeenbittenbyatick.Iwasfinebeforethetick coverpropercarewewillrunoutofmoneybeforeour familiesarehelped. bite.Notsoafterwards.Ihavelosttensofthousandsof dollarsthroughmedicalexpensesandmedicaldebt, Pleasestopandconsiderthatyourlongstanding throughtryingwhatLLMDsandnonLLMDshave opinionsoflymediseasecouldbewrong.Ibelievethere advised.AndIamstillill,whenIcouldbeworkinginthe aremanygoodandcaringdoctorswhoarenothelping sciencesagain.Idon'tcareatthispointwhatnameyou usbecausetheyhavebeentrainedtobelievethe givemycondition.Ijustwantmoreresearchdoneanda standardsyouhavedevisedforcare. solutiontobefoundthathelpsmeandeveryonehere. Therehasbeentoomuchhumansuffering.

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MargaretMelsonIwouldliketoseeIDSArecognize lymeastheepidemicitis.Iwouldlikeyoutodevelop accuratetestingandhelpful,effectivetreatments.I wouldlikecoinfectionstobeinvestigatedandaccurate andeffectivetreatmentsdevelopedforthem.Iwould liketheIDSAtoquitactinglikepeoplewhohavelyme arecrazy,depressed,psychosomatic....thelyme spirocheteiscloselyrelatedtosyphilus...youbelievein treatingthat,don'tyou? DeniseWeaverCouldyoupleaseallowallpoststobe preservedasopposedtodeletingthem....TY DeniseWeaverAsalymepatientoftenyears,I appreciateseeingothersopinionsandperhaps someonewillbeabletohelpus...thankYou ShiraLeeItwouldbegreatifInfectiousDisease Physiciansweremoreawareoftheseverityand treatmentoptionsforchroniclymediseaseandco infections.Also,thattheorganizationbemotivated purelyandcompletelybywantingthewellbeingand healthofallindividuals.Thankyouforasking! BettinaGartlehnerIchhabechronischeLyme Borrelioseundichfindeesschlimmdasdiese Erkrankungnichtalssolchegilt.Ichbekommschwer eineweitereBehandlungdaichmirkeineprivatenrzte leistenkann.BinMuttervon2Kindern(2und4Jahre) undmachmirauchSorgenumihreGesundheitdaich nunweidasichinderSchwangerschaftschon Borreliosehatte. Keinerweisetwasundkeinertutwas.Wannwird endlichreagiert,dieKrankheitistgenausoschlimmwie Aids.Nurwirwerdenignoriert.Bittewannhilftuns wer????? MicheleWoodHaynesItisheartbreakingtoreadthese postshere.Somanysuffering,somanylost,andalldue toatreatabledisease.Isawacommercialontv yesterdaycelebratingthecompassionatetreatmentof HIVandAIDS.AndthenwehaveLymedisease,the forbiddendiseaseofthe21stCenturythatistreatable withinexpensiveantibioticsinmostcases,andlong termIVand/ororalantibioticsinlatestagecases.Time towakeupandrevokeyourtreatmentguidelines. SusanneEngelhardtBeaware!Weneedhelp! RuthThomasWeneedtheIDSAtoupdateitsdoctorsin Lymeawareness,torecognizethelegitimacyofLLMDs,

towithdrawtheineffectivetwotieredELISAand WesternBlot,toacceptIGenixtestsasvalid,andaclear andwidespreadunderstandingthatChronicLymeexists andneedslongtermtreatment.Ilost2yearsofmylife duetoIDSAdoctorignoranceofLymerealities.With4 monthsofrecentantibiotictreatment,Iamfinallywell, thankstoaNONIDSAdoctor.Ifyouwanttohelp,you needtoembracenewfindingsandCHANGEcurrent beliefs.Thankyou.(Pleasedon'tdeletemypostagain.) ChristineHeidtIwishtheIDSAwouldheedthe warningsoftheirownresearchers,Khanetal,ofthe IDSAwhorevealedthatover50%oftheIDSAs guidelinerecommendationsarenotbasedonscience butratherarebasedonexpertopinion.Furthermore biaswasindicatedasbeingproblematicduringthe formationofmanyIDSArecommendationsandappears tobethecaseagainwithLymedisease. IwishtheIDSAwouldworkinharmonywiththeLyme communityratherthanwastingprecioustimedebating anddenyingresearchthatdeviatesfromtheir researchersexpertopinion. IwishtheIDSAcouldopentheirmindstothefactthat researchersotherthanthosefromtheIDSAhave valuableknowledgetobringtothetable.After browsingthroughthereferencesectionoftheLyme diseaseGuidelinesitbecomesapparenttheIDSA considersitselftobetheonlysourceofaccurate informationeventhoughitisoftenbasedonexpert opinionratherthanhard,coldfacts. TheLymediseasedilemmaisnotgoingtoenduntil furtherresearchandclinicaltrialsrevealthetruth.Put yourmoneywhereyourmouthisandprovethatyour expertopinionisvalid,ormaybediscoverthatitisnot correctbutdoitinanunbiasedsettingplease. JulianneZhouPleasehearwhatwearesaying. Yoursociety'sbeliefsonLymetreatmentanddiagnosis standinstarkcontrasttothepersonalexperienceof thousands. JoanLulichIhavelymefreebecauseofenergywork, NMTandYuenMethod.Beforeenergywork,Ifound highdosesofiodinehelpedmebecomemore functional. KarenMillerSinceyouask,Iwantyou,IDSA,torevoke yourguidelines.Doctorsinmypartoftheworldlookto CDCforinformationondiseases,theyseeyour guidelines,andfromthenonaresomisinformedthat

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theyareadangertotheirpatients.Myprimarycare physiciansaidthatnothingwillchangeuntilthose guidelinesarechanged.Youhavearesponsibilitytothe public.PleaseactinOURbestinterestandrevokeyour guidelinesimmediately. JeffHicksonYouaretheabominationinthemedical world.Denyingforyearstheexistenceofadiseasethat hasnoweffected100softhousands.ChronicLyme.I wasleftuntreatedformorethanadecadeinastate thatadoptedIDSAprotocols.Ibecameparalyzed, cognitionproblems,memoryloss,speechimpediments, constantpainandallbecauseasagroupyoudeniedthe existenceandlimitedthetestinganddiagnosis guidelinesforChronicLymedisease.Ihadadiseasethat didnotexistandwasthusgivenmultipleother diagnosesthatwouldnevergivemeactualrelief.Iwas toldthatIwouldnevergetbetter.Itwasallinmyhead andsomuchmore.ItwasnotuntilIgotmyselfoutof MAandintoCTandtreatedbyanILADStrainedMD whofearedforthelossofhislicensethatIactually improved.ILADSsavedmylife.MyLLMDsavedmylife. Mypersistencetogobeyondthegarbagethatyouspew savedmylife. JeffHicksonWhatdoIwantfromyou?Iwantyoutogo awayandbereplacedwithDrswhocaremoreabout theirpatientsthantheiracademiccredentials.Cannot changeyourmindasyouwouldadmittobeingwrong. Acceptyourmistakesandstarthelpingpatientsorgo away! KarenMillerThepreviouscommentwasaboutLyme Disease,writtenbyaveryfatiguedpatient.Thisiswhat ourlifeislike!(exstructuralengineer,nowondisability andfightingfortreatmentoflymeandseveralother tickbornediseases. ChispaLoroIwouldliketoseeyoureviseyourLyme diseasecriteria,includingrecognitionofthechronic phaseofBorreliaburgdorfii.Iwantyoutoalteryour statementaboutLymeandincludedefinition,diagnosis, andtreatmentguidelinesthatareinlinewithscience andwhatILADSandDr.Burrascanohavepublishedand madeavailable. KathySpryeGoebelAcureandNOPAIN KathySpryeGoebelandawaytopayfortreatmentto beridofthisCHRONICLYMES

LynneDeeLightBarrettIwouldliketoseehardworkto createHONESTtickborneguidelinesthatdon'tleave OUTthoseofuswhohavebeenillforsomanyyears withchronicillness. Iwouldliketoseeademandfromyourmembersto stopthepolitics,andmoneypoliticssothatouryoung peopleandchildrendoNOThavetoliveaLIFEfilled withpainandchronicillnesswhichrobsthemofalife worthliving. Wakingupdailywithonlypainandunbearable symptomswhichtheIDSAstatesareallinmymind makesmethatmuchworse.19yearsofsufferingthe devastatingeffectsofLymeandBabesiahavetakenall ofmyadultlifeawayfromme.Isufferedmanyyears priortothat,butnooneeventriedtohelpmeasIgrew upinpainandweakness.Iwasn'tdiagnoseduntil2000 aftersufferingthroughoutmylife.IDONOTwanttosee thishappentothechildrenoftoday!Idonotwant youngpeoplesufferingandlosingtheirlivestothese diseases.Evenifwelivethrough LynneDeeLightBarrettLymeDisease,thequalityoflife issoslimthatitrarelymakeslifeworthliving....SAVE ourCHILDRENandtherestofuswhohavesufferedlives ofdevastionfromLymeDisease.ChangetheGuidelines andHELPthehundredsofthousandswhoAREtryingto LIVEtheirliveswithsomebitofnormalcy.STOPthelies andpoliticsandHelpthosewhoaresufferingever lastingpainandruinedlivesduetoChronicLymeand otherformsofthisdisease!LynneBarrett KimoBaileyDitto. PattiCridgeBenalayatIcontinuetoasktheIDSAto changetheirLymeguidelines.Theircurrentguidelines havecausedmanypatientstoremainsickandget sicker.Theyhavecausedpatientstopayformany treatmentsoutoftheirownpockets,becauseinsurance companieswon'tpayforthenecessarytreatments basedonIDSAguidelines.Thisdiseasechangesfamilies livesfortheworse.Pleasereexamineyourguidelines andreachouttothoseofuswhoaresuffering. StephanieHarttheliesaboutLymeDiseasetobe retracted!!!andafewapologiesforthecoverup!! KellyMairsonIwasdeletedoncebefore.Itfeelsabit likehowIwastreatedbyDr'sbeforeIfoundmy ridiculouslybrilliantLLMD:)

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Thatbeingsaid,Ireallyhavenothingnewtoshare excepthopingyoucanteachyourDr'stolistentotheir patients.Iampostingsomecommentsmadetomeby Dr'swhofollowedYOURguidelineswhenIfirstgotsick "Youreallyshouldconsiderstartingagratitudejournal andwritingdownthethingsyouarethankfulfor becauseyoulookprettyhealthytome" "Everybodygetstired.I'mtiredrightnow" "Youwomen,youalwaysfindsomethingwrong.It's probablyRAandthereistreatmentforthat" "Coinfections?Youonlyneedtoworryaboutthemif youareelderly" "Enjoyyourvacation,thereisnoLymediseasein Maine" "Youdon'thavethosesymptoms.Yourkneeisnot swollen" "Maybeyourshoulderhurtsbecauseyourpurseistoo heavy.Ormaybeit'sfrompullingwetclothesoutofthe wash" "Ithinkyoushouldtalktosomeone.Iknowitcanbe difficultgettingolder" "PeoplewithLymeinfectionsdon'tlooklikeyou" Doesn'tthatmakeyouproud?Ittookme16monthsto getdiagnosedbecauseofthenonsenseabove.Ifthey hadjustlistenedtomemaybeitwouldn'thavetakenso long.IamsoincrediblythankfulforILADSandtheDr's whotreatus:) Iwishsobadlyyourorganizationwouldlearnsomething fromthemsoothersdon'tgothroughwhatIdid:( KatherineA.DohertyPetersonI'mnewtoLyme disease....butthatdoesn'tmeanIjustgotit...Ihave haditforyearsandthedoctorsskirtedaroundityear afteryear....finallyafterfiringseveraldoctorsmyND knewrightawaywhatitwas....I'veheardmuchofthe samethingsKellyhas...'It'sallinyourhead"andso forth...adocspends10minuteswithyouandbrushes youoff...buttheirnotwantingtotakethetimeis playingwith,notonlythequalityofmylifegoing forward,butmylifeingeneral...it'ssadthatpeopleare noteducatedaboutLymeandjustthinkit'sliketheflu... Educationisthebestweapon...

GayleLinkIDSA.Iamoneoftheluckyones.Iwasa chroniclymepatientwhogotmylifebackbecauseofa compassionateLLMD(LymeliterateMedicalDoctor). Hewaswillingtoputhislicenseonthelineforlong termantibioticandholistictreatmentformylyme, babesiaandbartonelladiagnosis.Iaskyoutoreadeach ofthealmost1,500responseswithanopenmind. Thesearerealpeople.Thisisarealdisease.Manyof themfeellifeisn'tworthlivingthroughthepain(and manyhavediedbecauseofit).Yourguidelinesdonot work,arenoteffectiveanddonotaddressthatitisa chronicillnesswhennottreatedcorrectlyintheacute phase.Weknowyoucare.Youarehumanbeings. Pleaseshowitbyrespondingandlettingusknowhow youplantomakeachange. ChristianDreibrodtPleasehelpthepeople.Your guidelinesarethereasonthatmanypeople becomechroniclymedisease. StephanieVandagriffMyLymepeople,keepcontacting mediaoutlets.Weneedtogetheard! LoganMcCullochI'dliketoseeLymeliterateMD's includedinthestandardsreviewprocess,and restrictionsonthe%ofresearcharticlescitedwhichare authoredbythemembersofthereviewboards themselves.I'dliketoseeformalinputbythepatient community. PeninahAnnFairness.Thewillingnesstosavethelives ofmillionsofpeoplewhosufferfromtickborne diseases.Becauseofyourguidelines,thedocsrefused totreatmykidsandtwohavebraindamagefrom neuroborreliosisandbartonellosis.Ihaveseenpeople diebecauseofyourdecisions. PeninahAnnItookamantotheERwhohadchestpain. Itoldthemthathehadbabesia.Theydidnothelphim, althoughhewasincriticalcondition,theysenthim homewithoutrehydration,oranyefforttosavehislife. NodoctorintheERknewhowtotakecareofhim.Can youexplainwhy? PeninahAnnMyhusbandwaslifefighted2times,and hospitalized5times.Whentheygavehimantibiotics, hestartedtorecover.Whentheytookthemaway,he lostfunction.Theynevercheckedhimforbartonella andborrelia,eventhoughourwholefamilyisinfected. theIDSAdoctorrefusedtotesthimforlymedisease. Whenasked,hesaid"no",turnedaround,refusedto

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speaktoeitherofus,andimmediatelydischargedhim, althoughhewascriticallyill. PeninahAnnBytheway,myhusbanddiedwithout treatmentbecauseofyourteachingandguidelines.He wasnotveryold. PeninahAnnAlso,Iwanttosay,thatthenumbersare onourside.Infouryearsoftalkingwithpeopleinour state,7outof10peopleknowsomeonewithLyme disease.Butofcourse,thereisnoepidemicofLyme disease.amazingthatpeopleoffthestreetknowmore thantheexperts,byspendingtalkingtopeopleinthe community. LisaCastilloIamachronicLymesuffererofalmosta decade.Asaresultoftheignoranceanddisputeinthe medicalcommunitytherearethousandsofussuffering beyondcomprehension!Iambeyondfrustratedwith whatisavailabletothoseoftryingtoconquerthis insidiousdisease...ifyoudon'thavefinancialmeansyou arescrewedsinceinsurancebasicallydoesn'tcoverthe coststoovercomethechronicconditionofLyme.My askisthatsomeoneoutthereactuallywilldevelop somesortofsupportandsolutiontothemostunder diagnoseddiseaseeffectingAmericansandpeopleall aroundtheworld.Thankyou DebbyMatthewsItwouldbenicetohearfromtheone manningthedeletebutton!!!!Canwegetsome answerstothequestions...Whyso silent?...Hellllooooooo!!!!!!!Notrealprofessional!!!!! ShalomeSineAreyouseriouslyaskingthisquestion? ThoseofuswhoaresufferingfromLyme'sdiseaseknow whatwewantthisyear.ProperresearchintoLyme's. PeninahAnnIheartheyhavedeletedhundredsof commentsalready,LOL. MichaelBrookinsComeupwithaCUREforLYME...This isREALandthesearealpeoplethataresuffering....and hurting....andunlessyouhaveLYMEorhasaloveone thathasit...itappearsnoonecares....WAKEUP America...WEneedyourHELP!!!NOW....... SaraConnorTotheIDSA PleaseexplaintomethetreatmentforWhipple"s Disease. Whipple'sDiseaseisabacterialinfection. LymeDiseaseisabacterialinfection. Whipple'sDiseaserelapses!

LymeDiseaseRelapses! IamwillingtolearnsomethingfromtheIDSA! Pleasehelpmeunderstandthedifferencebetweenthe bacteria. IftheIDSAdosen'tbelieveinlongtermtreatment. WhytreatlongtermforWhipple'sDisease? andnottreatLymeDiseaseforlongterm? TreatmentforstandardcasesofWhipple'sDisease fromtheMayoClinic'swebsite. Inmostcases,Whipple'sdiseasetherapybeginswith14 daysofintravenous(IV)ceftriaxone(Rocephin). Followingthatinitialtherapy,you'lllikelytakeanoral courseoftrimethoprimsulfamethoxazole,orTMPSMX, (Bactrim,Septra),foronetotwoyears.Ashorter durationofantibiotictreatmentmayleadtoarelapse. Anothercommontreatmentbeginswith14daysofIV infusionsofstreptomycinandpenicillinG,followedby oralTMPSMXforonetotwoyears. Treatmentforseverecases Ifyouhaveneurologicsymptoms,youmaybestarted immediatelyona12to18monthcourseoforal doxycycline(Vibramycin)combinedwiththe antimalarialdrughydroxychloroquine(Plaquenil).You'll alsobegivenlongtermantibioticsthatcanenterthe cerebrospinalfluidandbrain,suchasTMPSMX. IDON"TGETIT! AllisonNevittPleaseremoveandprosecuteanyone whohasbeenonanypanelsettingLymeguidelineswith aconflictofinterest. Then,please,revisityourguidelinesbyconsideringall theclinicalandresearchevidenceoutthere.Notwhatis filtered. Pleaselettheworldknowtheseverityoftheepidemic. Pleasevalidatepeoplewithchronicsymptomstodue Lymediseaseandattendantdiseasesanddisorders suchasautoimmunedeficiencies. Pleasestopconsultingtoinsurancecompaniesand givingthemvalidationfordenyingclaimsfortestsand treatments. AllisonNevittLastthing,pleaseacceptresponsibilityfor allthosewhohavesufferedand/ordiedduetoyour

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IhadtogotoanLLMDtoinitiallygettreatmentfor "guidelines"whichareusedasbullystickstocreatede factolaw. somethingthatwasobvious.Itcouldhavebeenentirely avoided.Ihaveendedupwithpersistingsymptoms,and Thankyouandmaythisbeacompassionateyear. regardlessofthecause,Iwantmoreresearchand compassionfordealingwiththis.Andattheveryleast, JanetLaidlawRecognition,supportandhelpforLyme ifIamsick,moreacknowledgmentforpersisting symptomstobeanofficiallyrecognisedcondition.Is Disease. thereanICDcodeforposttreatmentLymedisease?I don'tknow.IknowthereisoneforLymediseaseand MistyStopMonsantoSparkmanSomeonefillmein, myGPhasuseditinreferralstospecialistseven whatisgoinonwithLymedisease?Confused.Sounds thoughintheoryIshouldnothaveitanymore.Isn't likeitisabigproblem.Aremorepeoplegettingit? thatinteresting? JenJasper @MistyAlotofpeoplewhowerenot diagnosedwithLymediseaseshortlyafteratickbiteor KyleRiderTotouchbasewiththeabovecomment misdiagnosedhavebeenveryillforalongtimeand concerningWhipple'sdisease.Thefollowinglinkarethe havefoundthat,intheirexperience,takingtheamount treatmentguidelinesandsoforth.Reallyblowsaholein ofantibioticsrecommendedbytheIDSAisinadequate theIDSAguidelinesagainstusinglongtermantibiotic forrecovery.Insurancecompanieswillnotpayfor useforthetreatmentofLyme. additionaltreatment.TheIDSAhasstatedthatLyme diseasecannotbeachronicandpersistinginfection, ShellyHebertIwastoldbyoneofmanydoctorsto drinka5HourEnergyDrinkandgoforamassageto andanyantibioticsbeyondtheamountmentionedin treatmyjointpainsandfatigue.Iguessthealmost1500 theguidelinesisunnecessary.TheIDSAhasspeculated peoplethathavepostedonhereneedtodothesame thatpersistingsymptomsafterantibiotictreatmentare thing. causedbyanautoimmunedisorder.Theresearchfor thisisnotdefinitive.More researchisneeded,andthose JenJasper IshouldaddhereI'm JenniferMcNeillWallaceI ofusputinthepositionof somewhatdifferentinthisregard.Iknow amjustoneofmanyHolly havingtofigureoutjusthow Springs,NCresidentsafflicted Iwasbittenbyatickearlyonandhadan withLymediseaseand totreatthisconditionarenot EMrashbothcasedefinitioncriteria gettingenoughresearch. coinfectionsandthenumbers aregrowingheredaily.Our thatshouldhaveledtotreatmentasap storiesareallthesame.We ratherthangettingitnearly2months JenJasperIshouldaddhere arehusbands,wives,sons, later.Theremustbeagapinphysician I'msomewhatdifferentin daughters,fathers,mothers, training,asmydoctortoldmetherewas thisregard.IknowIwas teachers,businessmen, bittenbyatickearlyonand doctors,nurses,students noLymediseaseinCaliforniayetthe hadanEMrashbothcase whodidnotdeservethis.We areaIwasbitteninhadbeenflaggedby definitioncriteriathatshould wereleadingproductive, Dr. Robert Lane's department from UC haveledtotreatmentasap wonderfullivesfullofhealth Berkeley(hestudiesticksandworked ratherthangettingitnearly2 andhappinesswhenwe became illoutoftheblue. monthslater.Theremustbe withBurgdorferhimself).Thestateand agapinphysiciantraining,as theCDCknowthatNCaliforniais Welistenedtoallthedoctors mydoctortoldmetherewas endemic.Thedoctorshouldhaveknown whosaidthereisnoLymein noLymediseaseinCalifornia yettheareaIwasbittenin NorthCarolina,youarejust too. hadbeenflaggedbyDr. stressed,youneedtoseea RobertLane'sdepartment psychiatrist,dontaskme fromUCBerkeley(hestudiesticksandworkedwith aboutLymediseaseagain,youhaveChronicFatigue Burgdorferhimself).ThestateandtheCDCknowthatN syndrome,youarenotweak,youarenotsick,your Californiaisendemic.Thedoctorshouldhaveknown labslookperfect.Youcannotcallyourselfadoctorif youarenotlisteningtoallofusbeggingtobehelped. too.

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Wearemadetopaytensofthousandsofdollarsto recoverourhealthallbecauseofyourflawedtreatment guidelines.Ibecameillwitha2yearoldand4yearold thatneededtheirmother.Iamfinallydoingmuch betternowthanksto10monthsofIVantibioticsand continuingoralantibioticsandnothankstoyou,but rathertomyLymeLiterateMedicalDoctorwho happenstobeabrilliantinfectiousdiseasesspecialist whomIcancallarealdoctor.Hehasintegrity,isbrave and,aboveallelse,caresabouthispatients,somuch so,hegaveupeverythingtocontinuetofightonbehalf ofthesick.Heissavingmylifeandyouarenot. Istillfightdailybecauseoftheuntimelymannerof diagnosisduetothefaultybloodtests,butIcontinueto battlebecauseIdeservetolivealifefullofhealthand happinessagain.Youaretakingmothersandfathers awayfromchildren,destroyingchildhoods,ruininglives, dividingfamilies,andsubjectingpeopletounimaginable suffering.Whyareyoudoingthistoyourpatients?Why areyounotTRYING?Whereistheresearch?Whyare youignoringus? ThesearethequestionsIwouldlikeourInfectious DiseasesSocietyofAmericatobeansweringintheyear 2012.UpdatetheLymediseaseguidelinessoinsurance companieswillpayfortreatmentanddoctorscanhelp theirpatientswithoutfearoflosingtheirlicenses, developsuperiortesting,andlistentoandintegratethe researchthatisbeingdoneoutsideofyoursociety. Pleasehelpusforachange.Wedohavebrilliantminds andcanassistyouinthisquest.Listentous.Thiscould beahugestepintherightdirection.Thankyousomuch forasking,JenniferWallace,wifeandmotherof2little boys(picturedabovealltheywantinlifeisfor Mommytogetbetter),HollySprings,NC SusanLarsenI'dliketoalsoseetheISDAguidelines appropriatelyupdatedregardingcongentiallyme.Lyme canbetransmittedtobabiesandourchildrenneedto beappropriatelytestedandtreated.Wearecreatinga generationofundiagnosedlymethatwasnot transmittedbythebiteofatick. SarahElizabethShipmanIwouldlikemorerealistic guidelineswrittenbydoctorswhotreatLymeonadaily basisandcangiveamoreaccuratetimelineon treatment.Thenmyinsurancewouldactuallypayfor something! PaulaGalloMistyOccupyEverywhereSparkman:Please seethefilm"UnderOurSkin"andyouwillgetthebig

picture.LymediseaseisgrowingfasterthanAIDS.orgo toILADS.org KyleRiderHighlightthetreatmentsectiontotheabove oneyear.Ifyougavetreatmenttoanewlydiagnosed LymeDiseasepatientcaughtinearlystagesforone year.Maybeyouwouldhavelesspeoplecollecting disabilityandmedicare.Onethingthatisalmostcertain isyouwouldhavealotlesspeoplesufferingforover20 yearswiththishorrendousdisease.WAKEUP! SandeepGopalIDSAsucks!!Keeptherightdoctorsin thelymeboard.Howmanyofyourdoctorshave financialinterestinpharmaandinsurance? DeannaWood 1,500commentsandcounting.I'dsay themessageisclear.RecognizechronicLymeasthe travestyitis! KimDeSantisGoodwinAsmyfamilysuffersiwonder howmydaughtergotdailybactrimaspreventaivefor thepast2yearsbecauseshehasurinerefluxsojustin caseshegetsaninfectionutithenthemedicine preventsit.2yearsonantibioticsforsomethingjustin case.Mysonwhenhewas3wasputonantibioticsfora fullyearasmaintenacenottogetanotherearinfection. Whyfortheseminorthingsthathavenobacteriaand easytotreatifthereisabacteriagrowthbutnotfor this?Thisbacteriaisthedevilmanmadechangedfrom theoriginalbacteriabackineuropesomanyyearsago. Weallknowthatplumislandreleasedthesemanmade ticksfromtheNaziscientistTraub.Thiswasmeantasa bioweaponandyouallknowthat.Thiswholethingis socorruptandthatiswhyitissuchabiggoverment secret.Itstimetochange KimDeSantisGoodwin http://www.rense.com/general67/plumislandlyme.htm ExpandPreview KimDeSantisGoodwin http://daniellealbert.blogspot.com/2010/10/lyme diseaseresultofusbiological.htmlExpandPreview JesseLeeHughesIamslowly&painfullydyingbecause ofyourstupidguidelinesonLyme.Pleasestopdenying thetruth.Toomanyaresuffering.Dowhatsright. SonyaNelsonAfterlosingeverythingtoLymeDisease, becomingfullydisabled,Iwouldliketoseebetter testingandTRUEresearch.Don'tstopuntilyouhave theREALanswers.Dependabletesting!

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Justadmityoudon'thavealltheanswerssopeoplelike mecangetcoveragefromourinsurancecompanies. 2yearsofIVantibioticsalongwithIMinjections,oral antibiotic,travelingtoseedoctorsthatarewillingtogo againsttheIDSA,thousandsandthousandsofdollars (withgoodinsurance),andIamimproving.Ifeelas thoughIamfinallygettingmylifeback. KrisThecanarySisterLymeOpenyoureyestoourpain, sicknessthatisNOTINOURHEADS.LookintoourLyme diseasefullforce.Don'tbeSCAREDofit.Wewould appreciatethesamedignitythatyouwouldgiveany otherpatientwithan"infectiousdeisease"Wedon't needtobetreatedlikeyouwouldtreatadog.That's happenedWAYtoomanytimes. FrancineMonroyTheeducationofALLphysiciansnot onlyInfectiousDiseaseinthestateofFloridaregarding LymeDisease.Maybemydaughter,whonowhas neuroborreliosiswouldhavehadachanceofsome normalacysincetheageof15ifphysicianswouldhave openedtheirmindsandnotlaughedatmefortelling themitwasnotFibromyalgia,ChronicFatigue Syndrome,Insomnia,Arthritis,Tachycardiaetc.Myheart isbreakingformy23yrold............ GeorgiaStamosIwouldliketobetreatedlikeahuman being.Idonotwishforanyoneelsetogothroughyears ofmisdiagnosislikeIandmanyothershaveduetoyour guidelines.Thesetickborneinfectionsneedtobe treatedappropriatelyandinatimelymannerbefore damageisdone.LymeDiseaseisachronicinfectionand longtermantibioticshelpedmegettoaplaceIthought Iwouldneverseeagaineventhoughtheyearsof misdiagnosishascausedpermanentdamage.Weneed moreresearchandacure,don'tletthishappentomore peoplechangetheguidelines. DonnaRileyMichaudtolistentothosewhoareliving thelifeof"Chronic"LymeDisease,whichissaidnotto exisit,whateveritisthen,tofindacureandcometoa generalunderstandingsothatIdonothavetoseemy6 yearoldchilddeteriatebeforemyeyes.. CarlTuttlePleasereadthisletterandclickonthe agendalinktoseewhattookplaceonAug18thatthe NHDepartmentofHealth Aug22,2011 OfficeoftheGovernor StateHouse 107NorthMainStreet

Concord,NH03301 DearGovernorLynch, Atwoyearefforttoalertourpublichealthofficials regardingfaultyLymediagnostictestscontinuedwitha meetingheldattheNewHampshireDepartmentof HealthandHumanServicesonThursdayAug18,2011 at1:00PM AlthoughDirector,DrJoseMonterowasntpresentfour otherpublichealthofficialsdidattend.Wehadseven clinicians,twostaterepresentatives,andan independentfilmmakerinattendance. Thefocusofthemeetingwastoeducateourhealth officialsregardingtherampantmisdiagnosisofLyme diseaseduetothefaultyElisaandmisleading commercialWesternblot.Misinterpretationof laboratoryresultsisthemainreasonwhythemedical communityisdismissiveofLymepatientsandtheir symptoms. Apreparedagendawithproposedresolutionwas distributedtoallattendeesandfollowedclosely.We weregivenanhourtopresentandeveryonehadan opportunitytospeakwhowishedtodoso. NashuaPediatricianDrEmoryKaplanwhohasbeen unabletopracticemedicineforthepastthreeyearsdue toLymediseasereadhispreparedstatementinfrontof hiscolleagueswhoworkfortheDepartmentofHealth. HisElisaandWesternblotwerebothnegative. NeartheconclusionofthemeetingState RepresentativeJohnCebrowskihadstrictwordsforthe membersoftheDepartmentofHealthandsaid,Doing nothingwouldbeseenasnegligent TheDepartmentofHealthhaspromisedtopresentthe materialtoDrJoseMonteroandgetbacktousintwo weeks.Theconsensusamongthoseinattendancewas thatweintendtoholdtheirfeettothefire. http://home.comcast.net/~runagain/Dept%20of%Healt h%20Agenda.pdf Sincerely, CarlTuttle Hudson,NH03051 HayleySingletonBecompassionateandchangethe guidelinesforLymeDisease.Manyofusareneedlessly suffering.

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ValerieMainsWolferSomanypostshavebeen DonnaLewisBettertesting(moreconclusive)forLyme deleted.Iamsuretheyhavealegalteamcontinuously sodoctor'scanquitsaying"wedon'thaveLymeinthis monitoringanddeletingthemostincriminatingposts. area"... SherrillFranklinTheLymeandtickbornedisease SherrillFranklinAccuratedoctor'sofficetestsforLyme epidemicwon'tbethelast"emerginginfection" andthegamutofcoinfectionswouldgofarto challengewe'llfaceinthecomingyears.Withthatin eliminateneedlesssuffering.Thegrossinaccuracyof mind,perhapsitistimefortheIDSAtorethinkits existingtestsisattheheartofpatientdifficultywhenit guidelines.Adoptingtheveterinarycommunity'sspirit comestopropercareandtreatment. ofinquirywhenitcomestotickborneillnesswouldn't beabadplacetostart. ChrisMorbelliUrbanowskiPerhapseducatedoctorsto takeLymediseaseasseriouslyasmyveterinariandoes. CatherinePriceEducateALLhealthcareprovidersabout practicingILADSguidelinesandnotIDSAguidelines PhoebeKlemzacleanbloodsupplyforfuture becausetheyareinfearoflosingtheirlicensesifthey transfusions,freefromLymediseaseandthemanyco practiceILADS.EducateandEradicateLyme/CoExisting infectionsthatyoudon'ttestfor. infections...Please!!! SueLarkinDuckworth1.Iwouldlketheresponsible JenVioletLymeDisease!! membersoftheIDSAtoissueanapologytotheir organizationandtoallLymepatientsandphysiciansfor KatheGerhardtIwouldhopethatthesheervolumeof theappallingbehaviorexhibitedthroughoutthe requeststohavethe"medicalworld"acknowledgethe mandatedLymediseaseAntitrustguidelinesreview existenceandprovidedoctorswithviabletreatment debacle.Everyaspectofitshoweddisrespectforthe optionsandrequireinsurancecompaniestorecognize panel,thetruth,patients,andthemedicalprofession. theclaimswouldbemorethanenoughtoshameyou OthermembersoftheIDSAshouldbeashamedtohave intoactuallyfollowingthrough.Somanyvictimssuffer these'medicalprofessionals'inthisorganization,let needlesslybecausechronicLymediseaseallegedlydoes alonebeinpositionsofauthority. NOTexist...HELLO...ITDOES! 2.AcknowledgethatChronicLymeexists;screening TammyBettertoninsurance patientswiththeELISAtest coveragefordecentLyme thatIDSALymeexpertsknew NancyGenova Ihavetestedpositivefor diseasetreatment. hadpoorsensitivity(aslowas Lyme since 2006...deteriorated a year 50%!),THOUSANDSof patientswithLymereceived PatsySwinsonEveryLyme laterandwastold'YouCannotGetLyme patientthatdiesbecauseof Twice'....feltrejectedbyIDspecialistwho falsenegativeresultsby doctorstaughtbytheIDSA yourrefusaltoacknowledge wantedtopullmypiccafter21days...my thatthisdefinitelyruledout itisbloodonyourhands. storyissimilartoallpostinghear.Butwe Lyme.Withaspirochete ChrisMorbelliUrbanowski aretold(tilwefindanLLMD)thatweare infestationintheirbodies, PlumIsland untreated,formonthsto literallycrazy,sufferfromhypochondria yearsuntilfinallydiagnosed etc...whileourfamilieswatchusDIE!I ChrisMorbelliUrbanowski byfurthertesting,howcan Youdon'thavetoadmit onedenytothesepatients stilltestpositiveonbandsthatprove anything,justdotheright thattheirnow"chronic ACTIVEinfectionaswellasaniceco Lyme"doesnotexist?What thingNOW! infectionofbabesia! elsedoyoucallit,doctors? AsaClinicalLabScientist,I MabelQuinonesIguess wasshockedtolearnthata hittingthedeletebuttonis testwithsuchpoorsensitivitywasbeingusedatall,let theIDSA'sanswertoourcomments.WhyamInot alonebeusedasthesoledeterminantofnegativefor surprised. undeservedpatients,includingmydaughter,whose childhoodwasruinedbyundiagnosedLyme.WhenHIV

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screensfirstcameout,anythingunder90%sensitivity wasunacceptable.Andimprovementscamequicklyon testkits. ButwhynotthesameconcernforLymepatients?How couldsuchacrueltybeallowedtodevastatesomany people?Whynotmakethiscriticalinformationmore cleartophysicians,sotheycoulddiagnoseon symptomsaswasactuallyrecommendedbytheFDAso patientswouldn'tgountreatedastheydonow?How canthisorganizationnotfullygraspthisgravesituation andputanendtoit? 3.MembersoftheIDSAmustcleanhouseandrestore itsreputation.Certainlytheremustbememberswho aredisgustedbythebehaviorofthisIDSAoldguard, whoaredesperatelytryingtosavetheirreputationsat everyoneelse'sexpense.Thereisjusttoomuch evidenceandtoomanypeopleharmedtoignorethis. ThreasaBryantONEWORD "HONESTY!!!!!!!!!!!!!!!!!!!!!!!!!!" BrendaSmithSmartMoreresearchonacureforLyme DiseaseandhelpforpeoplelivingwithLymedisease. MitchGordonIrecognizethatthisisaFaceBookpage intendedformedicalprofessionalswhobelongtothe society.Tothoseofyoureadingthesepostingswhoare medicalprofessionals,I'dliketoaskyoutodothree things:1)readthroughalotofthesepostsandtake someofthesepersonalstoriestoheart,sothatyouget asenseoftheextentoftheneglectandharmtheLyme patientpopulationisexperiencing,2)readDr. Burrascano's2005Lymeguidelines (http://www.ilads.org/files/burrascano_0905.pdf),to learntheessentialpointsofwhatanexpertclinicianin chronicLymetreatmentwithalongtrackrecordof successunderstandsaboutthediagnosisandtreatment ofLymeandcoinfections,and3)startreviewingthe researchofDr.Sapi'steamattheUniversityofNew HavenandpresentationsatILADSconferences (www.ilads.org).WeintheLymepatientcommunityso badlyneedthemainstreammedicalcommunityto dramaticallychangecourseonthisdisease. PaulaGalloHowaboutyousupportaprotocolthatis costeffectiveandworks,IVvitaminCtherapyforLyme? KarenSmithResearchintocorrectdiagnosisand treatmentofLymedisease.....Foraskinbacterial infectionsuchasacne6monthstotwoyearsof

doxycyclinecanbeprescribedandyetforLyme diseasewhichisabacterialinfectionthatmayinfect everyorganofthebodyincludingthebrain.....Only threefourweeksofantibioticsisallowed???Thereare fartoomanytreatmentfailuresandchronicallyill peoplewiththecurrentguidelines.....Researchand doctorslookingcriticallyatthecurrentguidelinesis urgentlyneeded... JimVetterPleasestarttakingLymeDiseaseseriously andpreventthesufferingandlossofsomanyandhelp thosealreadysuffering. RobLabicaneHelpcureLymeforourfriendsandfamily whosufferandupdateyourtreatmentguidelinesso thatinsurancecompanieswillpayfortreatmentformy friendwhosuffersfromLymedisease. CaityBoydthisissofunny.foradiseasethatdoesn't exist,awholelotofpeoplearesufferingfromit..arewe alljust"imagining"symptoms? PeninahAnnToaskChildren'sMercyinKansasCityto pleasetestandtreatchildren.Theyaredyingtobe "seen"byphysiciansthataretrainedtotakecareof bacterialinfectionsinsteadofmakingfunandmocking thechildren'sparents.Ifollowedayounggirltothe hospitalandherparenthadtoacceptsteroidsaspartof thetreatment(whichiscontraindicatedinthe treatmentofautoimmunedisordersandsuppressed immunesystemconditionsfoundinpatientswithLyme disease).Thedoctorsrefusedtoacceptthatshehad Lymediseaseandtreatedherforsomethingelse. PeninahAnnToasktheVeteran'sAdministrationto readasimplepamphletabouttheexistenceofLyme disease.Theyweredeterminedtoletmedierather thanacceptmydiagnosisandprovideanantibiotic. Theytoldmethattickbornediseasesdonotexist. NancyGenovaIhavetestedpositiveforLymesince 2006...deterioratedayearlaterandwastold'You CannotGetLymeTwice'....feltrejectedbyIDspecialist whowantedtopullmypiccafter21days...mystoryis similartoallpostinghear.Butwearetold(tilwefindan LLMD)thatweareliterallycrazy,sufferfrom hypochondriaetc...whileourfamilieswatchusDIE!I stilltestpositiveonbandsthatproveACTIVEinfection aswellasanicecoinfectionofbabesia! PeninahAnnToaskWolframZuchert,Phd,toquit teachingmedicalstudentsatKansasUniversitythatits

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okaytotreatpeoplewithanantibioticiftheyhavelate stagesymptomsofLymediseaselikebellspalsy,"but onlyinendemicareas!"Whatkindofadviceto physiciansisthat?Toonlyallowtreatmentifyour countyhasan"endemic"statuswhenitisobviousthat alatestageneurologicalsymptomcommontoLyme diseaseispresent.WhenhecametoOttawatoteach physiciansfromthesurroundingtowns,theyweretold, "LymediseaseisnotaprobleminKansas."However, tenbusinessownersandtheirfamilymemberswere infectedandtheyspokewithpeopleinthebusinesses EVERYWEEKwhohadLymedisease.OneKUIDSA doctoratKUMedsaidtome,"therearenoticksin Kansas."Wehaveticks!WehaveLymeDisease!We haveaLymeDiseaseResearchCenterinManhattan! Wehavehadmuchresearchtakeplacebothhereand atNIH! JasonMcGoldrickI'dliketoseetheIDSArecognize LymeDisease(andotherinfectionsinthisdisease complex)aschronicinfectionsthatmayrequire extendedperiodsoftreatment.Orattheveryleastuse someofthatdineroonmoreindepthresearch. Biofilms,cysts,parasites,etc.Thanksforlistening PeninahAnnToteachadministratorsofhospitalsthat theycannotdenyaccesstohospitalizationbasedonly onthefactthatthepatienthasLymedisease.Ransom MemorialHospitaltoldmydoctorinOttawathathe wasnotallowedtohospitalizemewithlatestageLyme disease!!!! JasonMcGoldrickOhandIshouldadd....whenIwas firstdiagnosedwithLymeanIDDocprescribedme2 weeksofDoxycyclineandignoredmychronicsymptoms present(neurological,knees,heart).ILOL@2weeksof treatment.(IronicallyenoughitwastheIDSA's incompetencethatencouragedmetoresearchonmy ownandtakemattersintomyownhands.Iguessfor thatIshouldthankyoulol PeninahAnnTowalkwitheverysinglepersonthatcalls aLymediseaseadvocateforcomfortbecausethe personcannotfindonedoctorintheirstatewhowill testortreattheirchild! PeninahAnnStopsupportingresearchthatcomes againsteverysuccessfultreatmentthatisfoundby doctorswhoactuallytreatLymediseaseandmake peoplewell.

PeninahAnnStopcreatinganenvironmentthatismore toxictothepatientwhoisseverelyillthanthedisease itself...thewaragainsttheLymepatientreceivingcare thatworks.Itdestroystheheart. PeninahAnnToexplainwhymy17yrolddaughterhas hadaCDCpositivewesternbloteveryyearforthepast 5years?????withoutatickbite?andwithlongterm treatment!IthoughtyousaidthatthebacteriainLyme diseasedoesnotpersistpast28daysoftreatment! Whathappened??? GretchenAhlersRollCall!It'salltrue,thedoctorswho denigrate,patronizeandignoreseriouslysickpatients, allbecausetheybasetheirscholarlyreferencesonIDSA guidelinesandCDCtestingcriteria... NicoleGallagherIt'ssimplecutthepoliticalcrapand doyourjobthisyear. DsireWhiteToeachmemberoftheIDSA....God forbidthatyouoroneofyourlovedonesbecomea victimofthisdisease....butconsiderthis...ifwe(the victimsofLyme),infact,arespeakingtruth,thenitis entirelypossibleandlikelythatsomeofyouand/or yourfamilieswillbecomeinfectedand/oraffected,and theirliveswillcrumbleintonothingandbecomealiving hell.Isthatwhatitwilltakeforthisissuetobecome realtoyou??? ValerieMainsWolferSue,Ihopeyoudon'tmindthat I'mcopyingyourpost. SueLarkinDuckworth: 1.IwouldtheresponsiblemembersoftheIDSAto issueanapologytotheirorganizationandtoallLyme patientsandphysiciansfortheappallingbehavior exhibitedthroughoutthemandatedLymedisease Antitrustguidelinesreviewdebacle.Everyaspectofit showeddisrespectforthepanel,thetruth,patients, andthemedicalprofession.OthermembersoftheIDSA shouldbeashamedtohavethese'medical professionals'inthisorganization,letalonebein positionsofauthority. 2.AcknowledgethatChronicLymeexists;screening patientswiththeELISAtestthatIDSALymeexperts knewhadpoorsensitivity(aslowas50%!),THOUSANDS ofpatientswithLymereceivedfalsenegativeresultsby doctorstaughtbytheIDSAthatthisdefinitelyruledout Lyme.Withaspirocheteinfestationintheirbodies, untreated,formonthstoyearsuntilfinallydiagnosedby furthertesting,howcanonedenytothesepatientsthat theirnow"chronicLyme"doesnotexist?Whatelsedo

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youcallit,doctors?AsaClinicalLabScientist,Iwas shockedtolearnthatatestwithsuchpoorsensitivity wasbeingusedatall,letalonebeusedasthesole determinantofnegativeforundeservedpatients, includingmydaughter,whosechildhoodwasruinedby undiagnosedLyme.WhenHIVscreensfirstcameout, anythingunder90%sensitivitywasunacceptable.And improvementscamequicklyontestkits.Butwhynot thesameconcernforLymepatients?Howcouldsucha crueltybeallowedtodevastatesomanypeople?Why notmakethiscriticalinformationmoreclearto physicians,sotheycoulddiagnoseonsymptomsaswas actuallyrecommendedbytheFDAsopatientswouldn't gountreatedastheydonow?Howcanthis organizationnotfullygraspthisgravesituationandput anendtoit? 3.MembersoftheIDSAmustcleanhouseandrestore itsreputation.Certainlytheremustbememberswho aredisgustedbythebehaviorofthisIDSAoldguard, whoaredesperatelytryingtosavetheirreputationsat everyoneelse'sexpense.Thereisjusttoomuch evidenceandtoomanypeopleharmedtoignorethis. BruceDavidWrightHmmm.Let'ssee.Perhapsstartby lookingupthewords'phony'and'lacky'(drugcompany) inthedictionary.Ormaybe'joke'(sick)?Opps.Too 'abusive'?(Gee.Theremustbesomedrugtotakefor feelingabused.) GeorgeHarrisonThere'sachurchinOregonCitywhose membersaregettingchargedandconvictedof Negligenthomicideduetomistreatingtheirchildren withcurableailments.Theoretically,Notdoingtheright treatmentsonthesechildrenwasacrime.Ifthosesame standardswereapplied,Howmanyphysiciansinthis areaofexpertisewouldbeincarcerated? GeorgeHarrison(Bythisarea,ImeanrelatedtoLyme Disease);) GregBouldenIagreewithalloftheaboveLymespost. I'ma32yearoldwhosequalityoflifehasgonedownhill overthepasttwoyears.Iwastreatedin2007andtoldI was"cured".Andsincethreeofthewesternblotscome upnegativedoctorsrefusetotreatmychronic conditions,theytellmeit'snotLymes,Iwas"cured"of that.AsaresultI'vebeentoneurologist,cardiologist, ent's,hospitals...AndI'mmadetofeelI'mwrongfor wantingtogotoaLymeliteratedoctorwhichwon'tbe coveredbyinsurance...Cutthecrapandacknowledge therearemanyofusstillsufferingaftertreatment.

CherylHammanWatsonLymediseaseisaworldwide issue.IwasbittenwhileinNorthAmerica36yearsago, wasnevertreatedandhavesufferedwithmyhealth eversince.RecentlyIwastestedpositiveforBorreliosis andothercoinfections.Mytwochildrenwhowere borninthepast30yearsalsotestedpositive.They couldonlyhavecontractedthediseasethroughme. Doctorsinmyhomecountry,SouthAfrica,knowvery littleofthesediseases,andthisseemstobethecasein everyEnglishspeakingcountry.Inmyresearchonthe webIamgainingsomeideaoftheenormityofthis problem.ItseemstheEuropeancountriesareaheadin this.TheIDSAhasanopportunitytoleadtherestofthe Englishspeakingworldinthisshouldtheyhavean unbiasesrelookattheguidelines.Theyhavethe opportunitytoassistinpreventingsomuchuntold suffering,andbringhopetothehopeless.Don'tletyour opportunitytoassistthesufferingslipyouby! RolfTaylorWeneedtreatment.Pleasehelpusby openingupyourmind! AnitaHohendorfKolbeReadallcommentscarefully andthenpullbackintoaquietlittleroomandthink onceagain.Whydoesyourviewofthingssuchaflood ofprotest?Coulditbethatourwayismisleading?And thenbehonest!Andremember,yourviewofthingswill beplayedonmyback.InGermanyandthroughoutthe world. SharonGallagherBecarefuleveryone.Ithasdawned onmetheymaybecollectingyournamesonthissite. Theyrefusetoacknowledgethisdiseasesowhynow? Weknowwhotheyworkforandifthiswasanhonest attempttohelppeopledontyouthinktheywouldhave bynow.AllIamsayingisbecareful.Maybeweshould friendeveryoneunderacertaingroupandkeeptrackof eachothertomakewegainmorecontrolofwhatis reallyhappen.Ibelieveiftheyonlyhavesomanyhits onthissiteanditsnotenoughforthemtoworryabout youwillbeignored. MichelleMurphyWhataboutthosewhotest seronegativeaccordingtotheCDC,Butarestillinfected andarerefusedtreatment? JasonOrloffUntilitispossibletoisolatetheLyme borreliaorganismfrommostpatientswiththe persistentphaseofthediseasepriortoantibiotic treatment,howisitpossibletosaywithcertaintythat activeinfectionwiththeorganismdoesnotpersistafter theIDSArecommendedtreatment?

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RmRmmTakeimmediateactiontoreversethecriminal sufferinginflictedbyobstructingprogressregarding Lyme.Immediatelybegintodiagnose/help/treat/cure Lymepatientswithtesting&protocolsthatwork!All theresourcesareavailable;theyarejustbeing criminallywithheld. MarcusDavidssonGaryP.Wormsershouldfirstofall besackedfromNewYorkMedicalCollege.Thenhe shouldbeprosecutedbytheInternationalCriminal Court(ICC)forcrimesagainsthumanity.Ikidyounot. Whenyouaremisleadingthegeneralpublicand misrepresentingscienceinsuchagrotesquewayyou reallyshouldtaketheconsequenceofyouractions... SonnenScheinIDSA,whydoyoudeletethecomments? Youaskedaquestionandyougotmanyanswers.Now wewantyoutoanswerOURquestions!!!!!!!!!! JasonOrloffIDSA,Willyouspecificallystatewhatyou wouldneedtoseetobelievethatactiveinfectionwith Borreliaburgdorfericanexistinsomepeopleafteryour recommendedantibiotictreatment? HollyGryningBucyTostartreallyhearingallofthese FrankWilliamsSr."Inallaffairsit'sahealthythingnow andthentohangaquestionmarkonthethingsyou havelongtakenforgranted."B.Russel.Byspreading yourguidelinesallovertheworldyoucausedsomuch painandsuffering,thatyoushouldfinallystartto recognizetheresponsibilityandobligationthatcomes withthatact.Itisnottoolatetomakeachangeand acceptLymeaswhatitis:aglobalepidemic,thatcanbe hardtodiagnoseandevenhardertotreat.Don'texpect ustostayquietandwatchourlivesgoingdownthe drainanylonger! NadjaFlindrisSoyouhavetoSeehowmanyPeople answeretoyourquestion.Youdonthavedeletethem. Weallarefightingforourlive,ourchildrenandyou delete???????Shameonyou!!!!! NancyBaumgartnerGrouppsychosis?Ithinknot! SarahLeonard14yearsagoIhad3tickbites,anEM rashatbitesiteandtestedpositiveforLymedisease andalsoHumanMonocyticEhrlichiosis.Iwastreated for30daysandWASALMOSTSYMPTOMFREE.Ibegged forONEMOREMONTHOFDOXYbutmymdsaidany symptomsleftwereresidualandthatmoreabxwere dangerousandagainstguidelinesofthestandardof

care.WithinoneyearIwasdiagnosedbythatmdand hisreferralswithibs,fms,cfs,raynaudessyndrome, gastricreflux,adiepupil,anearlyawakeningsleep disorderandwhatmynewrheumatologistseriously called"amultisystemprogressiveneurologicaldisease triggeredbypostLymesyndrome."Thiswasamixof MS,ALSandParkiesymptomsincludingbradykinesia, micography,musclewasting,progressiveweakness,loss ofbalance,bodyjoltswheremybodywouldseizeand joltintotheairafishonaline,visionandhearing problems,choking,restingtremorandamovement disordercalledchoreawithathetosis.My encephalopathywassobadthatIbegantogointo dementiaattheageof28. Icouldnotremembermytoddlersnameorwhomy husbandWAS.HEWASASTRANGERTOME.Ihad insurancebutwehadtotakeoutasecondmortgagefor 50,000cashtopayformyivRocephin.Within9months Iwas95%normal.Ihavenowbeensymptomfreefor12 years.ButIamonmaintenanceabx.IfIgooff,Idecline afteronlyafewdaysverydramatically.Dr.StrickerofSF SAVEDMYLIFE.IDSA,youhavebeensadlymisled.You havebecomemurderers.Iwasgoingtobeplacedina nursinghomeattheageof29bymyhusbandand mother.IhavefacilitatedthelocalLymegroupfor13 yearsnow.Wehavehad2peoplekillthemselves.We havehadafewlongtermsurvivingALSdiagnoseswho followedLymeprotocols.Youneedtopayattention becauseyoursocietyhasarichhistoryofsavinglives. ButyouarehelpingKILLPEOPLE. Sincerely, SarahLeonard SarahLeonardPeninahAnn,Iamafellowlymieand justwantedtosayIhearyourpainandfrustration,but thewesternblotisanantibodytestnotdirectdetection soitinnowayprovespersistenceofthebborganism, justthatatonetimeshewasexposed.Ibelieveyour daughterisstillill,Ijustwantedyoutoknowthe scienceofthatbecauseyourstatementwasillogical.I amsorrywehaveallhadtosuffersomuch. GillMcsIgnoringLymeisacrime!!! JoshCutlerEveryonecontactyourlocalnewstation. Contactthenationalonesaswellifweget40%ofthe postingpeopletodothiswecangetsomecoverageof this.

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Contactlocalnewspapers,localcongressman.Dowork guys.Wehavedoneagreatjobpostingherenowtake thenextstepthatwillonlytake15min. Wecanandhavethepowertochangethedirectionof this. JoshCutlerTheIdsaisheadquarteredinAlexandriaVA. ContactNBC4theyarelocaltothem. Iwillpostlinkonhowtocontactyourlocalcongress manandjustgoogleinfoforyourlocalnewsstation. Takethe15minittakestomakeadifference.The powerisinyourhands.Wehavebeensickandquietfor fartolong. LisaO'ReillyPetersonAnInfectiousDiseasedoctortold meourdaughter,8yrsoldatthetime,waspossibly exhibitingsymptomsfromthestressof9/11orhad possiblybeensexuallymolestedbecausetheLymetiter wasnegativeandit's99%accurate.Please!Ieven explainedthatshehadhadarashonthebackofherleg thesummerbefore.Ifollowedmymotherlyinstincts andfoundadoctorthatwasknowledgeableabout Lyme.After2yrsonantibiotics,helpfulsupplements, andalotofprayersshewasbetter.Andshehasnoill effectsfromthelongtermantibiotics!IDSAlistento whatwearesaying.Thesymptomsarereal.Thereare notthatmanyhypochondriacsintheworld. NicoleRandazzo@SharonGallagher...Wearenot afraidthattheynowknowournames.Weknowtheir namesandit'sabouttimetheIDSAandtheworldknow ournamesandthefaces.Wehaveseveralpagesthat manyofusjoinedtogetheronfbandincommunityand nationwidegroups.Wearesmarterandstrongerthan theythinkandwearespreadingourmessage.Wersick andtiredofbeingsickandtiredandnotgoingtolet themcontrolourtreatmentordecisions. JeffHicksonIampostingthisasecondtime.Weall needtokeepposting.Youaretheabominationinthe medicalworld.Denyingforyearstheexistenceofa diseasethathasnoweffected100softhousands. ChronicLyme.Iwasleftuntreatedformorethana decadeinastatethatadoptedIDSAprotocols.Ibecame paralyzed,cognitionproblems,memoryloss,speech impediments,constantpainandallbecauseasagroup youdeniedtheexistenceandlimitedthetestingand diagnosisguidelinesforChronicLymedisease.Ihada diseasethatdidnotexistandwasthusgivenmultiple otherdiagnosesthatwouldnevergivemeactualrelief.I wastoldthatIwouldnevergetbetter.Itwasallinmy

headandsomuchmore.ItwasnotuntilIgotmyself outofMAandintoCTandtreatedbyanILADStrained MDwhofearedforthelossofhislicensethatIactually improved.ILADSsavedmylife.MyLLMDsavedmylife. Mypersistencetogobeyondthegarbagethatyouspew savedmylife. JeffHicksonWhatdoIwantfromyou?Iwantyoutogo awayandbereplacedwithDrswhocaremoreabout theirpatientsthantheiracademiccredentials.Cannot changeyourmindasyouwouldadmittobeingwrong. Acceptyourmistakesandstarthelpingpatientsorgo away! SusanCampbellChrisFinkle http://www.businesswire.com/news/home/201201050 05605/en/BoulderDiagnosticslicensesLymedisease diagnostictechnology BeateSchollWhatdoIwant?Iwantyoutostart helpingpatientswithLyme!Please,thinkaboutyour takenoath! KathleenFarrellPleaseenterthe21stcentury,update yourguidelinestoincludelongtermtreatmentofLate StageLymedisease,coinfections,childrenbornwith ailmentsfromanundiagnosedmother.Itwasn'tlong agothatnoonetestedfor"Fifth'sdisease"inpregnant womennowit'sbeenshowntocausefailuretothrive ininfantsanddevelopmentalissues.Youarecapableof change,youarecapableofallowingmethemedical treatmentmydoctororders.Mylastmedicationwas deniedbyapharmacyREALLY?!overmydoctor. Disgraceful.And,no,Idonotwishthisonanyoneinany ofyourfamiliesasnooneshouldhavetosufferwhat wehaveovertheyears. JoshCutlerStartcontactingthemdirectly. AudreyJackson,PhD,IDSAsProgramOfficerforScience andResearch,atajackson@idsociety.orgor703299 1216. SorrytheyareinArlingtonnotAlexandria. 1300WilsonBoulevard|Suite300|Arlington,VA 22209|Phone:(703)2990200|Fax:(703)2990204 Thisisthelocalnewsstationthatwouldcoverthis.They havecoveredtheLymediseasedebateMANYMANY times.Thiswouldpeakinterest.Takethetimejusttofill outtheform.

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thatthereisn'taGodbecausethereissomuch DOYOURPART!!! evidencearoundmethatthereisaGod. KathleenFarrellNoproblem,Joshgladyouarefeeling KathleenFarrellNowitwouldbeinterestingtoseeif wellenoughtoprovidetheinfoIcandotherest! theyemailmeback! JoshCutlerHasanyonepostedthistoPintrest? JoshCutlerThanksKathleenmyprayerthatALLreading thisthreadwouldseemypostandcontacttheproper JoshCutlerThanksKathleenFarrell!!!Notfeelingthat peoplethatarelisted. well:)Inbedwithalaptopjusttryingtodomypart.We JoshCutlerOKfolkshereisalltheinfoyouneed,except needproperguidelines,testsandpeopleworkingona cure. foryourlocalnewsoutlets.Doingthiswilltakeyou5 CarrieGarmanthankyouallforspeakingupforushere. minandcouldsaveourlivesandthoseinthefuture IseriouslythoughtIwasgoingtodieafewweeksago. fromfurthersuffering.Infobelow.Don'tjustTAKE Allthesecommentsneedtobeseenandsomething ACTION... drasticallychangedtohelpLymepatientsbefore anymoreliveslost.Iamonly44andMychildrenstill AllIaskfriendsandfamilyisthatyouREADTHIS,Share needmehereonthis itandpassiton.Wearetrying JeffHickson ....Weallneedtokeep earth!PleasepleaseHELP togetthisspreadQUICK.Ifyou usmakeitwhereMD'swill couldtake15mintoreadthe posting.Youaretheabominationinthe treatusastheywouldtreat casebecomeinformedand medicalworld.Denyingforyearsthe theirownfamiliesandnot submitthistoalocal existence of a disease that has now justafilenumberandsent congressman,localnews offtodie!!!! station/paper. effected100softhousands.Chronic Lyme.Iwasleftuntreatedformorethan GretchenAhlersGood Ifyoureadallthepeople adecadeinastatethatadoptedIDSA morningJasonOrloff!The sufferinginanunjustmanor protocols.Ibecameparalyzed,cognition questionsthatLymebrings youwillunderstand.Ibegand uprequirecreative,open pleathatyouwouldread.Only problems,memoryloss,speech minds.Beginningtocare Wethepeoplecanstopthe impediments,constantpainandall sufferingofinnocentpeople. aboutthesufferingof because as a group you denied the peoplelikeSarahLeonard existenceandlimitedthetestingand AgainPLEASEreadthisthread. requiresapassionfor Ifyoucouldalsohelpweare medicine.Thestarting diagnosisguidelinesforChronicLyme tryingtogetNBC4inWashDC pointisthatissueof disease.Ihadadiseasethatdidnotexist tocoverthestoryifyoucould certitudethatyouraise. and was thus given multiple other shareyouropinionviathelink Thisisaphilosophical below. conceptandonethatisnot diagnosesthatwouldnevergiveme alwaysappliedinatypical actualrelief.IwastoldthatIwouldnever diagnosessuchasMultiple Also,Ihaveleftcontactinfofor getbetter.Itwasallinmyheadandso Sclerosesofatypicalorigin theIDSAifyouwouldto muchmore.ItwasnotuntilIgotmyself orwhetherapersonwith contactthemforquestions. cancerisgoingtodieof Haveagoodday.Pleasedothe outofMAandintoCTandtreatedbyan stagefourcancerinthree ILADStrainedMDwhofearedfortheloss rightthing.15minofyourday monthsorthreeyears. couldchangethelivesof of his license that I actually improved. Therearemedical hundredsofthousandsof ILADSsavedmylife.MyLLMDsavedmy questionsthat,likethe sufferingpeople. questionofwhetherGod life.Mypersistencetogobeyondthe existsornot,canbe AudreyJackson,PhD,IDSAs garbagethatyouspewsavedmylife. reasonablyraisedbythe ProgramOfficerforScienceand evidencethatexistsornot. Research,at Icansay,"welltheskyissobeautifultoday,theremust ajackson@idsociety.orgor7032991216. bealovingGodbehindallofthis".Ican'tsayforafact SorrytheyareinArlingtonnotAlexandria.

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1300WilsonBoulevard|Suite300|Arlington,VA 22209|Phone:(703)2990200|Fax:(703)2990204 Thisisthelocalnewsstationthatwouldcoverthis.They havecoveredtheLymediseasedebateMANYMANY times.Thiswouldpeakinterest.Takethetimejusttofill outtheform. DOYOURPART!!! http://www.nbcwashington.com/contactus/ https://writerep.house.gov/writerep/welcome.shtml JoshCutlerHeresorryforgotthelink... https://writerep.house.gov/writerep/welcome.shtml WriteYourRepresentativeContactyour CongresspersonintheU.S.HouseofRepresentatives. writerep.house.gov TheWriteYourRepresentativeserviceisprovidedby theU.S.HouseofRepresent... KathleenFarrellMyprayerisforyoutostartfeeling betteratleastyouhavealaptop!UnlessI'msittingat myPC,I'mnotonlinenofancyphoneoranything. MarthaFisherIwouldtoseethe"Lymewars"cometo anendandseepatientstreatedforLymediseaseuntil theyarecured.IfthereisnosuchthingaschronicLyme whatareallthepeopletalkingaboutwhohaveit? Pleasereadthewritingonthewallanddowhateverit takestoeducatealldoctorsinepidemicstates.IfID docsareattheforefrontoftreatmenttheyneedto workwithpatients,notagainstthem,urgeinsurance companiestostopdenial.Theproblemsfromchronic Lymecostfarmorethansanetreatmentinthefirst place.ItisanobrainerthattheISDAandCDCneedto seekatruecureforthishorribledisease.Pleaseendthe ridiculousdebateandlistentoallthetrulysickpeople andhopesomeoneyoulovedoesnotevercontract Lyme. GretchenAhlersJasonOrloff,Tocontinue,Itcannotbe saidwithcertitudethatactiveinfectionDOESNOTexist asisthecasewithSarahLeonard.Generalpractitioners whohavenotchosentobecomeexpertsininfectious diseaserelyonIDSAguidelinesandendupdismissing patientswhocontinuetobeverysickafterthatlittle bottleofdoxycycline.Theissueofcertitudein

guidelinescouldgotheotherway.Itcannotbesaidthat LymeBorreliaisNOTpresentwhenapersoncontinues todegenerate,asSarahleonarddid,invitalnervous functionsinthebodyincludingthosenervesthatare responsibleforcardiacandrespiratoryinnervationand crucialtemporallobefunctioning.Thetheoryofepitope spreadinghelpstoexplainthephenomenonoffailureto manufacturepositivelongtermantibodyresponse. So....thescientificquestionsinvolvedwithLyme Borreliosesarestillquestionsthatrequireresearch.To assertthatthisisnotso,empowersinsuranceand doctorswhoonlyascribetoguidelinesandprotocols.It disenfranchisestheveryrealvoiceofthesuffererswho knowtheirowncertitudewhichisthattheyarefacinga horrendousdiseasewithverylittlemedicalsupport, despitetheirtaxdollarsandsteepinsurancepayments. Infact,thedebateissoacidthatthisistakenoutonthe sickandsufferingandtheyaredenigratedandcastout. Let'sgetbacktowhatcanbecertainandwhatcannot andhaveaninquiringmind,onethatknowsthatthe truthwillberevealedwhenwereallyseekforit. GretchenDaniels,RNBSN MaryAnnMazzarellaIpostedwayupthelistbuthave anotherideaifanyoneisreallyouttherelisteningand cares.It'sobviousLymeDiseaseisanissueconsidering everyoneansweringyourquestionmentionsLyme.I haventheardawordyotherdiseasehere.Setup anotherFBpageorwebsitejustforusLymepeopleand familiesofpeoplewithLyme.Letustellourstories,post pics,listallthedrugswehavetriedandareon.Maybe theIDSAcanlearnsomethinganddosomethingtostop thisepidemicandpeoplefromsuffering. JoyBirdseyIwouldliketoseetruthandjusticefor LymesandME,IamnotsurewhatIhavehadfor20 years,dxMEbutnotestsandIliveinanareaofmany ticksandtheamonophalis(thinkthatshowyouspellit) mosquito,andorganophatesprayinguptoourgarden fences,duetoToneyBlairrecindingthe3metreruleon agrospraying. JoyBirdseyAlsothemedicalinsurancecompanies exposedforcoverupsofLymesandME SummerBushnellDoalongtermstudyonLymepeople toproveordisprovethedisease. MaryAnnMazzarellaI'mguessingthiswon'tstayup long...IjustGoogled3ofthe12Dr'swhoauthoredthe guidelines.Iplantolookupall12butthe3sofarhave

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terribleratingsfrompatients.Thesearethepeoplethat arebasicallywritingthemanualforotherdr'sonhowto carefortheirLymepatients.Disgusting. KellyPattersonRecognizeLymesandhelpmyfriends whoaresufferinggreatlyfromit'seffects. NancyCargell1)Listentopatients;2)Understandthe hopelessnessandhelplessnessthatthosewith persistentsyptomsexperience;3)WorkwithILADS physicianstocooperateonresearchthatgathersthe factsratherthansearchingtosupportwhatisbelieved tobetrue;4)worktoidentifythecomplicationsthat occurwithcoinfections;5)worktoimprovetestsand diagnosis;6)openyourcollectivemindtotheconcepts thatILADSphysiciansconsiderregardingimproved outcomeswithdifferentantibioticcombinations, pulsing,switches,andtheirtimingbasedonsymptoms; 7)findoutmoreaboutthedifferentformsofthe spirochetes;8)researchimmunesupportbecauseit's highlyunlikelythatsciencewillanytimesoonfigure outhowtotestforALLthepathogensthatcause infectiousdiseasesandtherealkeytotreatmentwillbe inunlockingthemysteriesoftheimmunesystemand persistenceofpathogensindormantstates;9)improve yourcollectivecompassionforpatientswithpersistent symptomssothatyoucanbetterunderstandWHY thesepatientsarewillingtogototheextremesthat theydoinordertorelievethesymptomsandtrytobe cured. In2013,afteryou'vemovedinthedirectionofthe above,youcanworkondisseminatingresultsofGOOD research,educatingphysicians,andworkingwith insurancecompaniestoproactivelyaddressimmune diseases.Thankyouforasking. ValerieMainsWolferIDSAdeletedmycommentfrom yesterdaysoIamreposting.Mystoryislikesomany otherssuffering.ForyearsIwastoldIhadapoor immunesystem...thenIwasdiagnosedwithCFIDSand toldbyanIDdocthatmyleveloffunctioningwasbelow manyofhisAIDSpatientsbutunfortunatelytherewas noeffectivetreatmentforCFIDSyet.Iwasputon disabilityandcontinuedtoprogressivelygetworseand thenfinallyafternumerousinaccuratetestsforLyme,a knowledgeabledoctorwhisperedtomethatIneeded toseeaLymeliteratedoctorimmediatelybecauseIhad almosteverysymptomonthelistincludingbrain lesions.Unfortunately,after30yearsofvarioushealth issuesIfoundouttoolatethatLymewasthecauseand amnotrespondingtotreatmentashoped.

Toaddinsulttoinjuryfamilyandfriendsarerepeatedly toldLymeDiseaseisnobigdealorthatitdoesn'texist bytheirowndoctorssotheycannotbegintofathom thelivinghellmylifehasbecome.Inwhatworldisitno bigdealwhenapersonhasallofthefollowing:brain lesions,seizures,tremors,inflammation,profound fatigue,dailyflusymptoms,compromisedimmune system,autonomicdysfunction,severecognitiveissues, lymphaticdisease,chemicalsensitivities,neuropathy, jointdeterioration,autoimmunediseasesofthethyroid, lungsandcns,relentingjoint,muscleandnervepain andmorerecentlyproblemsdetectedwiththeheart, kidneysandliver.Nobigdeal...IthinknotIDSA! AlanaLofgrenQuitesimply,torevisitguidelinesand reviseTxprotocolsforLymeandCo'sbasedon empiricalandREALscientificevidencethatLyme knowledgeableMD'sknowisworking.Thisisa devastating,lifeandfinancesuckingillness...ignorance anddenialisnotanoption! ValerieMainsWolferForthosewhoarewellenough, pleasetakethetimetogetthisthreadtonewsmedia outletsthroughoutthecountry.I'msureoneofthem willpickitup. BrittenKilduffIwouldloveforyoutoactuallytakean objectiveviewonthetestingguidelinesforLymein 2012.Doyouthinkhundredsofthousandsofpeople arethatstarvedforattentiontheywouldcreatea diseasethatis"allintheirhead"byyourdefinition.Why areyousoafraidtohaveanoutsidepanelreviewthe informationandmakeaninformeddecisiononthe materialthathasbeenpresented?Anoutsideandfair reviewwouldnotconstituteapanelpickedbyIDSA membersandformedalmostexculsivlyofIDSA members.Livesareatstake,isn'tthatmoreimportant thenmoneyandprestige?Pleasegobacktotheoath youtookwhenbecomingaMDand"donoharm." DoloresClaessonCanyoupleasepostthequestionson zoonoticpathogensthattheIDdocsmustpassfor boardcertification?Aretheylisted? AndyLautinThefollowingisawordforwordtranscript ofaclinicalnoteauthoredbyDr.WormserLetusseeif theIDSAhasthemerittokeepthisonitssiteforallto readandforalltodrawtheirownconclusions. IwenttoseeDr.Wormseron5/30/97becauseIwas unwell,andTerry(mywife)entertainedthepossibility ofLyme(searchingtheWebledhertothispossibility. AndsearchingtheWebledhertothenameoftheLyme

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specialistDr.GaryWormseratValhalla,Westchester MedicalCenter). Dr.Wormser'snote(annotatedbyme)isreproduced immediatelybelow: 48y/oWMpsychiatristfromYorktownHeightsx23 years. 11/2yearsagovertiginous,impairedconcentration.An MRIrevealedleftsphenoidsinuswasopacified.Also hadpositiveLymetiter(1).Underwentsurgical drainage,thenfeltbetterbutrelapsed.Twoweekslater aLymetestwasrepeatedwhichwaspositive(2).Saw Dr.Yankowitz(3)Andhesawaneurologist.TheCT,LP wasnegative(4) Doxycycline100mgpobidx3wksx1yeargap.And thenhefeltbetter.Butnotlasting(relapsedwhilestill onRx).ChangedtoAugmentfor21/2weeksandfelt better. Fiveweeksagomitralrepair(5).Forseveralweeks precedingsurgeryhadrecurrenceofdizziness(but receivednodx.)Postopdidn'tfeelwellattimeof discharge.. Currentlydoesn'tfeelwell. Temp99.599.8rectally,feelsbetteronNSAID. PE:Normal. Imp:DxunclearbutNOREASONTOIMPLICATELYME (5)inthepostsurgicalcomplaints. Dated5/30/97(6) 1)ThepositiveLymetiterwasobtainedatthetimeof thesphenoiditiswasidentified.Iwasverydizzy,illand andCTrevealedanopacifiedsphenoidsinus.The radiologicalindicationwasclear.ENTsurgery. 2)TheresultofanELISAdrawnon12/27/97conducted byStonyBrookLymeLabwas3.34Fourtimesthe upperlimitofnormal. 3)ABethIsraelinfectiousdiseaseattending. 4)Dr.Wormerputthewordnegativeinquotesfor emphasis. 5)Ievidentlywasbornwithafloppymitralvalve. SatisfactoryetiologyforcongenitalMVPisnotavailable. 5)Caps,foremphasisaremine.

6)AsnotedELISAwas3.34orFiveTimestheNormal Limit.OnthesamedayaWB(SBLymeLab)revealed elevenIgGbandsandoneIgMband ThisopinionrenderedbytheexpertonLymeat WestchesterValhallanMedicalCenter. Thisisperfidy Mynameisofnoconsequenceinthesensethat everyoneisexposedtothis.TheIDSAmembershave family,orextenedfamilyoutsideplayinginthewoods rightnow. Ifyouhaveanyconcernforyourownhealthorthe concernofthehealthofothers,Anyone,everyonesay something,sayanything. ButIwillprovidemynameAndrewLautinMD TammiBakerZiccardiItoowouldlikeyoutoupdatethe Lymediseaseguidelinessoinsurancecompanieswill payfortreatmentanddoctorscanhelptheirpatients withoutfearoflosingtheirlicenses,developsuperior testing,andlistentoandintegratetheresearchthatis beingdoneoutsideofyoursociety.Ihaveseenfirst handabeautifulandvivaciousyoungmotherandwife becomehousebound,helplessandfearful.Thisdisease robbedherofprecioustimeandexperienceswithher smallchildren,husband,familyandfriends.Shewent throughmonthsandmonthsofcountlesstestsand criticismonlytobetoldmany,manymonthslaterthat shehasadvancedLymediseaseanddamagehasbeen done.Itisaveryrealanddevastatingdiseasethat needsimmediateattentiontohelpthosewhoneedit. Whatwillyoudotohelpthisgrowingproblem??Iwant toknow!Pleasedon'tturnyourbacksonthisharmful disease! DoloresClaessonComenowlet'sbenice...letusmake upsomequestionsfortheirboardcertification? DoloresClaessonIamsureyouwantpatient involvement? DoloresClaessonHowaboutsomeinvolvementfrom Biologists/chemistsandresearchersintheIDarena? DIALOGUEisagoodthing....dictatorshipdoesnotwork. DoloresClaesson http://www.avma.org/public_health/zoonotic_risks/hu nters_precautions.asp Diseaseprecautionsforhunters www.avma.org

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DukehadnoideawhatthebloodworkWBwasfor Ageneralguideaboutzoonoticandotherdiseasesthat LymeandbythewayshehasanELISAof2.19and+WB huntersandtheirhunting... SeeMore atQUEST! DoloresClaessonHeytherearequiteafewmissingbut DoloresClaessonOneofmygoodfriendsusedtobean itisstillagoodlist...toobadveterinarianscan'ttreat IDdocandInowknowwhyheleftthisfield. humans.Theyseemtohavemoreofahandleon zoonoticpathogens. DoloresClaessonMyWBcamebackpositiveand CynthiaMayerDOIDtoldmetogotoNYbutnotto comebacktohercausesheknewnothingabout AndyLautinThetwofiguresontheleftthesepostures Lyme.... couldbebilateralhemiballismus(caughtonapicture) secondarytoinsulttothesubthalamicnucleibilaterally. DoloresClaessonIthinkweshouldgiveyouthenames Andthis(ifthesepoorfolksawDr.Wormserfor andphonenumbersofalltheInfectiousdisease evaluation)secondarytoDr.Wormser'santinosological physicianswhohavewillfullymisdiagnosedus...Thanks andantitreatmentbias.Cytokines/microbescando toCynthiaMayercauseIdidseeandILADSdoc!! nastythingsintherostralbrainstem. DoloresClaessonOneofmyfriends(pediatrician)told RuthThomasIhavebeendeletedtwice.BothtimesI requestedacceptanceofIGenixtestresults.Isthisa methatIwouldfindnohelpfromanypediatricIDdocs sorespot?IDSAdoctorsignoredmyIGenixresultsand hereinFLandrecommendedthatIflynorth.Not tookawaytwoyearsofmylife.Yourguidelinesare everyonehasthefundstohopaplanetoseeadocwho WRONG.Weshould willtest/treatthem!Wehave RickShawIchallengetheIDSApanelto collectivelysueifthereare migrantworkerssufferingwith notsignificantchanges this! beinjectedwiththebloodfromjustone withinthenextyear. thenow"healthypeoplewithPostLyme InfectiouslyOptimisticLast symptoms"iftheirfindingsaretruethey AngelaRiversAmore year,anumberofwriterscame havenothingtoworryabout,RIGHT?!?!? togethertowriteaseries widespreadacceptance thatthisisaseriousdisease entitled"MyLymeDiseaseis andshouldbelookedat NotTheIDSALymeDisease". _________________________________ morecarefullybytheentire Personally,Ibelievethatstories medicalcommunitynotjust DoloresClaessonOnceanIDdocknowsa andtheaccountofour LLMD's.Itwouldalsobe experiencesspeaklouderthan Lyme/morgellonspatienttheygetit! niceifinsurancecouldhelp angerandfrustration.Each Theyrealizethatthoseguidelinesshould pickupsomeofthecost storysharedillustratedthe be thrown away. thatussufferingcoulduse pain,suffering,anddebilitation ofthosewhoarestruggling togetpropertreatment. withLymeDisease.Yet,each Stressmakestheimmune systemworseandisharderforpeoplesufferingfrom storyalsoshowsthecourage,strength,andendurance Lymetohealduringtimesofstress....Propertreatment requiredtokeepfighting.Ibelievethatthisisafarmore andcostcoveragewouldaidinthehealingprocess. effectivewaytohonorthetruth,ratherthan commentingoutoffrustrationandire.Pleaseseethe DoloresClaessonHEEHEE!CarinaRodriguezMDped bottomofthefollowingarticletofindadditionalstories andposts. IDdoctoldmethatmydaughterhadhormonalissues andthattheysawthisinhighachievinggirls...she http://infectiousoptimism.blogspot.com/2010/12/my wastedmycellphoneforthat?Let'sseesheisIgM+ LymediseaseisnotidsaLyme.html forBorrelia,Babesiaduncani,EhrlichiaChaff, Bartonella,andBrucellaandhasshownantibodiesto RickShawIchallengetheIDSApaneltobeinjectedwith ParvoB19andpapillomavirusesandIgM+forHsv1 thebloodfromjustonethenow"healthypeoplewith andhaslowIgGsubclasses.Theproblemisthecaliber PostLymesymptoms"iftheirfindingsaretruethey ofIDdocs.DavidBermanalsomisdiagnosedwhenthe havenothingtoworryabout,RIGHT?!?!? bloodworkwasinfrontofhim.TheheadofpedIDat

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JeannieBonetpelsDearIDSAdoctors,Ihavebeen misdiagnosedfor16yrs.Bedboundforsevenyears. Missedoutonmythreekidsgrowingupandnowmy twograndkids.Iamcurrentlyintreatmentthankstoa wonderfulILADSdoctor.Today,becausewearetrying tokillwhatisinmybody,I'minbedagain.Theworst partofthatisthatIamatmyelderlyparentshousefor theweekendtocareformyelderlymom.Butsheis caringformethisweekend.Thatishorriblywrong.I wantmylifebackandIknowthatyouneedandshould changeyourattitudesaboutthisawfuldisease.Itisn't goingaway,oneofthesedaysandwiththeinternetit willexplodeinyourfacesofallthesickpeople.HIVgets moreattentionyetLymeDiseasehas10timesmoresick adultsandthepoorchildren.Please,foryoursaketake precautionswhengoingtothegreatoutdoorsoreven sittingonaparkbench.Thiscouldhappentoyouor yourfamiliesnooneisimmune.I'msickandtiredof beingsickandtired.Don'tturnablindeyetothis, becauseit'snotgoingaway.Wearen'tgoingaway. DoloresClaessonDrDaleBergamopedIDdocstormed outofthehospitalwhentheytoldhimtocomeseemy daughterinherhospitalbed....hewasillpreparedfor someonewholovestheirchildandhaddonesomuch research!!COWARD!!Howaboutreprimandingthese IDdocswhohavebehavedsobadly?? DoloresClaessonComeoutfellowlymiesgivesome namesoftheIDdocswhoslammedthephoneinyour ear? DoloresClaessonMobeenRathoreisanotherone...he toldmeIcoulddrivetoseehimbuthemayormaynot seemydaughter.HellistoogoodfortheseIDdocswho aremistreatingpatientsandthenIknowsomegood onesbutcannotgivetheirnamesforfearof retribution.WewilltakeovertheIDSAbecausewewill findIDdocswithaconscience. DoloresClaessonOnceanIDdocknowsa Lyme/morgellonspatienttheygetit!Theyrealizethat thoseguidelinesshouldbethrownaway. DavidKoronetIwouldliketoseesomegoodresearch onwhattreatmentsareeffectiveforLymedisease.Isee alotofinvectivehere,buttherealityisthatthethree weekprotocolhasn'tbeenputthroughanypublished papersthatIknowofitisasmuchconjectureasevery otherLymetreatment.Whatworks,whatdoesn't? Pleaseputtheresearchmoneyintothat,ratherthan thefruitlessquestforaLymevaccine.

DoloresClaessonALLChildren'sHospitalinStPeteis knowinglytellingpeoplethereisnoLymeinFLwhen theStateBoardofHealthhasusdownasanendemic state.CallJuanDumoisandaskhimwhathehasdone toCHILDREN!! NadjaFlindrisWritemore!!! Againandagain!!!!! theyhavetochangeit!!!!! WearewatchingyoufromGermany!!!!!!! ChristineKellerLymeFolks,pleaselet'skeepourposts informative,includeyourstateoforigin,andstayon task,let'sattemptnottodebateherebuttoobjectively stateourmeritoriouscasesthattheIDSAandthe media,andourlegislatorswilltaketheinfoseriously. Somepeoplethinktheirpostsarebeingdeleted,but youhavetoremembertogobacktothetimeyou posted,withFBonlyshowingincrementsofthemost recent50outofover1600posts.I'mwithyouall,andn theIDSAtoHitlerinitsmassmurderandwillfuland knowingdestructionoflives,completemistreatment, andnotbackinginsurancecoverageforthebillionsin unnecessarymedicalaccumulatedtodateasadirect resultoftheIDSA'scorruption.Iaskeachofyouto contactyourlocalCDCandyoustatesAttorneyGeneral, I'mattemptingtostartamovementnedtothemulti stateclassactionsuitsagainstthetobaccoindustry,but Ican'tdothiswithouteachofyourhelpeveryoneof youneedstoparticipatetoseeresults,thisiswhere yourvoiceandactioncanmakeadifference!I'malso askingfolkstocontactnationalmediaonthisissue.Itis veryimportantyoupostyourstate/countryoforigin,so theinvestigationintothismovementreflects nationwideconcernnotjustlocalizedpopulations. Helpmehelpyoufolks!Postconstructively,include state,contactyourstate'sAGandCDC,emailyour local/nationalmedia.story@nbcuni.com, letters@msnbc.com.Thankyou! JoanneDraysonExcerpt Itwasobvioustoparticipantsattheworkshopthata significantimpassehasdevelopedintheworldofLyme disease.Thereareconflictswithinandamongthe science;policy;politics;medicine;andprofessional, public,andpatientviewspertainingtothesubject, whichhavecreatedsignificantmisunderstandings, strongemotions,mistrust,andagameofblaming otherswhoarenotalignedwithonesviews.Linesin thesandhavebeendrawn,sideshavebeentaken,and frustrationprevails.Thewalkinthewoodsprocessof conflictresolutionorasimilarprocessseemsnecessary

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forcreatinganewenvironmentoftrustandabetter environmentformoreconstructivedialoguetohelp focusresearchneedsandachievebetteroutcomes. Suchaprocessdoesnotimplyacompromiseofthe sciencebutratherisneededtoshifttoamorepositive andproductiveenvironmenttooptimizecritical researchandpromotenewcollaborations. http://www.ncbi.nlm.nih.gov/pubmed/21977545Ifonly theIDSAwouldreadthispapertheywouldrealisethat 'SignificantGapsRemainInUnderstandingofLyme Disease.' CindyHallClarkIDSA,pleasestopdeletingourposts" MichelleNewellWeneeddoctorswhoareNOT enjoyingconflictofinterestmoniesliningtheirpockets, togettogetherandwritetheguidelinesfortreatment ofLymedisease.Ourchildrenaresufferingallforthe sakeofmoneyliningthepocketsofafewcorrupt individualsthatcreateguidelinesthatsaveinsurance companiesafewbucksorthethoughtthattheycan patentthenextgreatvaccine.Thecosttosocietyto havetocareforthosewhoaretooilltoworkormust quitworktotakecareoftheirillchildrenisenormous! Thecosttosocietyandtopersonalwellbeingofnot treatingissomuchhigherthantreatingapersonwith Lymedisease.Doctorsarebeinghuntedlikeanimals anddeniedtheirlivelihoodsiftheytreatpatientswith Lymedisease.Ipersonallywouldratherdietryingand willingtotakeanyriskofantibioticusetofightLyme diseasethantodieahorrible,painfulanddebilitating diseasethattakesmyphysicalandmentalabilitiesaway onesmallpieceatatime. ShariOrtonAlbertsonLymeDiseasehastakenmy futureawayfromme,IdoubtthatIwilleverenjoymy grandchildren,andwonderifIwillbeabletoworklong enoughtoearnapensiontosupportmyselfinthe future.Somuchmoneyiswastedinthiscountry..inthe worldforthatmatter,andyouhaveinfrontofyouone ofthebiggestcripplersknowntoman,yetyoumakeit difficultorimpossibleforpeopletogettreatment.Itis shamefulthatyouarenottakingthisseriouslyand holdingushostagetothisdisease.Weneedmore researchonreversingthedamage,preventingits continualdegenerationofourbodiesandminds,and weneedaccessthroughourmedicalinsurancetopay fortreatments.Thisiswhatyouaresupposetodo,so whatareyouwaitingfor? KarenHassanInspiteofCDCpositiveWBfromSpinal Tap,IDdocstoldusourson"absolutelydidnothave

LymeDisease".Mysonisoneofmanyyoungadults whoareondisabilitybecauseofdelayedand inadequateLymetreatment.After41/2yearsof treatmentbyanILADSdoctor,heismuchimproved. Theresearchisoutthereandavailabletoall,showing thepersistenceofborelliaafterthe"magic"30daysof abx. KimDeSantisGoodwinIhadtodiagnosemyselfandmy husbandafteryearsofdrsthrowingoutincorrect diagnosing.Ievenhadsurgeryfornoreason.After knowingwhatIhadevenwithoutanymemoryofatick no,noredrashandnottheroutinesymptomsafter lookingatrealpeopleandthenonDrsitesIfinallyknew forsurewhatwehad.HowdidIfigureitoutand10drs couldn'tandcloseto19betweenmyhusbandandI. Thereissomethingveryverywrongwiththispicture. HelenFasyIusedtobeanORRN.Attheextremely healthyageof37IwasinfectedwithLymediseaseand severalothertickbornediseases.Ihadabulleseyerash (large)onmyleftthigh.Sadly,in1987Ididn'thavemy "PhD"inunderstandingalltickbornediseasesthen. AlthoughIhadsymptomsalmostimmediatelyIhadno ideahowseverelyillandincapacitatedI'dbecome.At thesametimeourthen9yroldhealthydaughterbegan feelingveryill.Fever,excruciatingpressureheadache 24/7,painfulkneesextremefatigue.Wetookher desperatelyto12doctors./eventheheadofpediatrics atCHOPinPhilaPA.Weweretoldeverythingfromit wasfromherjaw.toaversiontoschool(sheadored school...verybright,manyfriends)askedusifwewere abusingherandwhynotconcentrateonsomething positiveto"takehermindoffofit".Ourdaughterwas veryill,inextremepainandfinallybegantohavevision changes.Wewerelosingher.finallywefoundanangel MDwhosavedherlife.Afteralumbarpuncturewhile hospitalizedtobeimmediatelytreatedforLyme disease,itrevealedshehadpseudotumorcerebriand papellidema.ShebeganIVantibioticsandhadasevere jarishherxheimerreaction.AsshecontinuedIV treatmentthenoralantibioticsanddiamoxweprayed foracompleterecovery.Onedayshewalkedslowly downthestepsandsaid"mommy,myheaddoesn't hurtanymore". Shecontinuedtoimproveasthetreatmentcontinued untilwegotourlittlegirlback.Thehappiestdayofour lives!IcontinuedadownwardspiralandknewIhad Lymediseaseandprobablyothertickbornediseases. Horrificpainbeganinmyface,gumsbrachial plexus....allmycranialnervesalongwithslurredspeech,

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inabilitytowalkaloneandsevere"brainfog". Encephalopathy.Myleftsidebegantobeweak,Ihad Bellspalsyandextremefatigue.Mypainwassoterrible webeganoursearchforanexperiencedpainMD. FinallyAwonderfulboardcertifiedpainmanagement MD,aneurologist,sawmeandtreatedmysuicidallevel paincorrectly.SheunderstoodLymedisease,amazing! BeforeIgotproperpaintreatmentIwasseenbyseveral dentistssinceinitiallythepainfeltitwasinmyteeth.I had6rootcanalsurgeriesdone(nopathology)aTMJ arthroscopy(nopathology)sinussurgery(nopathology) andfinallytheextractionofallmyuperteeth.Agin,no pathology.Iwasincapacitatedbythisungodlypainand desperate. ALLMD(Lymeliteratemd)finallycorrectlydxmein 1993.7yearsafterthebulleseyerash.Irespondedto treatmentalmostimmediatelyandfeltsomuchbetter aftermyjarishherxreaction.Unfortunately,Iwastold thatIcouldstopantibiotictxsinceIfeltabout90% better.Bigmistake.Within7daysIbecamesoillmy husbandtookmetotheER.Thepressureandpainin myheadandelsewherecausedmetovomit uncontrollably.DespitetheterrificpainmanagementI wasgetting,itcouldn'tstopthis.AftergettingIV dilaudidintheERthepaindiminished.I'dhadallthe brainscansetcpreviously.MySPECTscanatColumbia PresinNYChadshowedseverehypoperfusionboth corticalhemispheres.Myneuropsychevaluationresults werepitiful.ItoothenbeganIVantibioticswith amazingresultsbutwithin10daysitwasstopped. Despitealwayshaving"cadallaclevelPPO"forhealth insurancethroughmyhusbandscorporationcontinued treatmentwasdenied. IwasfinallyseenbyawellrespectedLLMDwho resumedIVtreatment.AgainIbegantocomebackfrom hell.Myhusbandhasspentenormousamountsoftime fightingwithinsurancecompanies.Finallyforquite awhileitwascovered.Iwasfinallydiagnosedwith babesiosis,ehrlichiosis,bartonellaHHV6and8CMV andmycoplasma.Beingtxforbabesiosiswith mepron/zithromaxwasamiraculoustime.Iimproveda greatdeal. Myhusbandbegantohaveseverefatigue,almost constantheartpalpitations,brainfognumbness.Hetoo hadLymediseaseandrequiredIVantibiotics.Many timeshecalledandtoldmehecouldn'tfindhisway home.I'llneverknowhowhekeptworkingwithhispicc linehiddenunderhisdressshirtandmanagedmany

people. finallythesummerbeforeourotherdaughterwasto begincollegeshetoowasexhausted,hadsevere headachesandencepalopathy.ShetoobeganIV antibiotictx.Followedbyoralantibiotics.Both daughtershusbandseembettertoday.Bothdaughters eitherrelapsedorwerereinfectedabout6yrsago,both backonIVantibioticsfollowedbyorals.Unfortunately,I remainchronic.Tosustainabout40%ofmyformer healthyselfIcontinuelifesavingtreatmenttothisday. We'vehadsomepositivetestsbutnotestexiststoday thatis100%accurateindiagnosingthesetickborne diseases.Everyotherillnessknowntomanhasbeen ruledout.Everytestknowntomanhasbeendone.Due toanunavoidablesituationIwasn'tabletotakemy medsforaboutamonth.Ibecameliterally"ICU"level sick.Afterresumingtx,withinanotherverydifficult difficult810daysIwasabletositupinbed,walkagain andresumemymuchappreciatedleveloffunction. ThecostsofdeniedmultiplelifesavingIVantibiotic treatmentsetchavedevastatedusfinancially.That alongwithmyhusbandandmanyothersinupper managementinhiscorporationbeingdownsized(nice wayofsayingyou'velostyourjobatage55)addedto ourdirefinancialsituationnow.I'vebeendisableddue toneurologicaldamageforquitesometime.Please agreetoreviseyourguidelines.Considertheenormous amountofevidenceshowingthatchronicLymedisease existsaswellasothertickbornediseases.Wehave boughtandsoldseveralhomeswithcorporatemoves. Weallwereextremelyhealthybeforebeinginfected withtickbornediseases.Nobodywouldchoosethislife iftheyhadachoice.Iwouldn'twishitonmyworst enemy.IwilldieifIdonotcontinuemylifesaving treatment.Despiteeverything,Iwanttolive. Again,Irespectfullyaskyoutoreconsiderthecountless peopleandfamilieswhosufferandhavehadtofightfor treatmentweknowwemusthaveinordertohavea chanceatliving.Thedelayintreatmentanddiagnoses ofthesediseasesiscausingsomanyofustobecome disabledorworse.Thedevastationtofamiliesaffects everyfacetofourlives.Thankyou. LouAnnMartinPleaseconsiderLymediseaseasan infectiousdisease. SaraSchultzIDSA,pleasestoprepresentingthe insurancecompaniesandthepharmaceuticalindustry, andstartupholdingyourtrueobligation:toprotectthe

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IDSAthatendangersthehealthofthisnationand publicfrompreventabledisease,needlesssufferingand others.IsthiswhattheIDSAisabout?Yourtruecolors death.TheIDSA(anditspartnerincrimetheCDC)can continuetosuppresstherealityofundiagnosedand arebecomingevermoreapparentanditmaybewell untreatedLymediseasebutyouwillNEVERsilencethe overdue,,,timeforfurtherstateandlocalgovernment truth........................................ legalactionagainstyourorganization,federal governmentinterventionandacallfortheremovalofa BobbyjoeHollidayhttp://youtu.be/dzAduXFyISU number(ifnotmost)ofyourcompromisedboard members. WherehavealltheFlowersGone PatsySwinsonWheneverImeetsomeonewithLyme www.youtube.com symptoms,Itellthemtheyneedtobetestedforit,but Astoryofthesonginpictures neverwiththeElisaandwhatevertheydo,DON'Tgoto BobbyjoeHolliday aninfectiousdiseasespecialistbecausethathas https://www.facebook.com/events// becomesynonymouswithNOTgettingadiagnosisor gettingwell.Ishouldn'thavetogivesuchsadadvice. SomethingisVERYWRONGhere,andit'snotjustthe linkstoallMorgellonspages factthattherearesomanypeoplewithLyme.Why Thursday,April,at:amatFacebook aren'tyouembarrassedaboutthefactthatyou'renot doingyourjobs? BobbyjoeHollidaywherewillourchildrenbeinthenot sodistantfuture KathleenDicksonCDCofficer AlanBarboursaysOspCis KathleenDicksonWell,I StaceyTumlinson Acknowledgeand associatedwithbrain don'tknowwhattheythink learnhowtotreatChronicLymeDisease invasion,sohemustbe they'retalkingabout.Ticks frompeoplewhoKNOWHOW!Ask delusional.IDSAsaysthere onlyresultonbadkneesin arenobrainstoinvade. Connecticut,andOspCis ChronicLymesuffererswhatworksfor associatedwithbrain themandtalktothedoctorsthat invasion,whicheveryone successfullytreatthem.Stopcallingit knowsdoesnothappen. FibromyalgiaandsayingthereisNO Lymeisjustaknee.And anyonewhosaysotherwise CURE. has"somepsychiatric illness,"accordingtoAllen http://www.ncbi.nlm.nih.gov/pubmed/9234797 Steere,etal. ImmunologicandgeneticanalysesofVmpAofan... http://www.ncbi.nlm.nih.gov/pubmed/ [InfectImmun.]PubMedNCBI www.ncbi.nlm.nih.gov GenotypicDiversityofanEmergent...[VectorBorne ZoonoticDis.]PubMedNCBI KathleenDicksonButweknowthatwouldbeonlyon www.ncbi.nlm.nih.gov IDSA'spart. KathyObalCarlstromIDSA,itseemstomethatyouare deletingcommentsthatcontainneitherfowllanguage, SaraSchultzIwouldalsoliketheIDSAtoexplaintome norattacks.Truthfulcommentsabouttheseriousness howIcouldbebittenbyatickinaknownendemic areadevelopadistinctiveBull'seyerashfollowedby ofLymediseaseandcoinfectionsthatunfortunatelyfor classicsymptomsoflatestage,disseminatedLyme youexposeyourseriousfailuresasanindependent disease,yetcountlessdoctorsinCanadarefusedto medicalorganization(withlittle,ifanyaccountability) evenconsiderthePOSSIBILITYthatImightbesuffering haveapparentlybeenrepeatedlyremovedfromthis fromlatestage,untreatedLymedisease? dialogue.Asyoukeepdeletingrelevantandnon attackingcommentsbyLymepatients,itbecomes clearerthatthereisacoverupofthefactsandtruth KimDeSantisGoodwinWhenreadingthesecomments aboutLymeandotherseriousinfectiousdiseasesbythe doestheIDSAthinktheycankeepusingtheexcuseof

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antibioticslongtermaredangerous.iDSAourbodies ourdecisionwhenyoucantbreathorsleepyouarein somuchpain.Alsoknowingthatorganbyorgan,muscle bymuscleandthedamagestoeverypieceofyourbody doyouthinkwedontknowtouseprobioticsandtake thingstosupporttheantibioticuse.Itdoesntcome closetolivinguntreatedwithLymeandcoinfections. Thatexcuseisoverusedandneedstostopbeingused. Noneofuswanttotakeanythingbychoice. WedidntaskforsomesickototurnLymeintoa weapontohurthumans.Thisiswhyouranimalsare easilytreatedandhumansarent.Itwaschangedto trickthehumanimmunesystemandattackourbodyin confusionanditstimeyoucallitanautoimmune disease.Studiesshowinatesttubewithstrong antibioticswiththeLymebacteriaalonenevermindthe coinfections,doesnotkillalltheLyme.Thisisproof that21daysforonewouldnteverbeenoughandwith Lymeturninginto3formsandhidingdeepwithinthe bodyitwouldtakesolongtogetitall.Iamonmonth 10andeverymonthinoticeimprovementsbutiknowit willtakemeanotheryearorsotobereadytostop antibiotics.Ialsotake30supplementsaday,boughta infraredsauna,rifemachine,drankperoxide,mms, hypobaricoxygenchambertherapy,nosugarandthe listgoesonandiwentuntreatedfor5years. Whataboutpeoplethathavehadittheirwholelife.Im terrifiedformydaughternotknowingifthiswilljustgo awayorifitwillcomebackandharmherlaterinlife. Soonyouwontbeabletocoverthisupanymoreto manypeoplehaveitnow,spreadingthewordonthe truth,thecelebritiesaregettingitandspeakingout. Soonthewrongpersonorshouldisaytherightperson willgetitfindoutthetruthandmillionsmorewillknow thetruth.ifeelevenworseforthemillionswalking aroundthinkingtheyhaveMS,Fibroandthelonglistof wrongdiagnosis.Allalongneverhaditandwastedtheir lifeondrugstheynevershouldhavebeentakingand thebacteriakeptgrowingallthoseyears.Thefdacant standthethoughtoflosingmoneywithpeoplebeingon allthosedrugswhenLymedrugsarenotforeverthe otheronesare..ashamedoflivingintheUS PaulaGalloHowaboutsettingupsomebigrife machinesforpeopletouse?Thatworkstoo. KarenMillerIDSA,hereisyourmissionstatement:The InfectiousDiseasesSocietyofAmerica(IDSA)represents physicians,scientistsandotherhealthcare professionalswhospecializeininfectiousdiseases. IDSAspurposeistoimprovethehealthofindividuals,

communities,andsocietybypromotingexcellencein patientcare,education,research,publichealth,and preventionrelatingtoinfectiousdiseases.OurCore Values Enhancingcareofchildrenandadultsbasedonsound scientificevidence Advancingthedisciplineofinfectiousdiseasesasa foundationofmedicineandpublichealth Promotingandsharingknowledgetoreducehumanand societaltollfrominfectiousdiseases Advocatingforsoundandhumanepublicpolicy Promotingcollaborationandcooperationamong,and servicesfor,membersandotherprofessionalcolleagues BrittanyGoffiwouldlovetoseealltheInfectious Diseasedoctorsstopbeingcowardsanddenyingthe propertreatmenttoLymedisease.monthsof antibioticsandifeelamazing,nothankstoyou.... KarenMillerContinued:IDSA,readyourmission statementandafterthat,readthesecommentsfrom thepublic.Theonlylogicalconclusiononecandrawis thatyouhavefailedinyourmission.Readyourcore valuesyouhavefaileditems1,3and4.Youhavefailed toadheretomostofyourcorevalues.Myquestionto you:Whatdoyouplantodotoexonerateyourselves? CarlTuttleTheTuttlefamilywasfeaturedonNew HampshireChroniclesLivingwithLymewiththe programarchivedontheirsiteinsixsmallsegmentsfor viewingonthecomputer. http://www.wmur.com/chronicle/24181311/detail.htm l AlthoughourstorytakesplaceinNewHampshire,faulty Lymediagnostictestsaremissingtensofthousandsof casesworldwideeveryyear. Basedontheuniversalmisunderstandingoflabresults, Ihaveconstructedawebsitehighlightingtheplagueof ignoranceasitrelatestothemisdiagnosisofLyme disease.Pleasefeelfreetopassthisalongtoothers.(A mustread) NewHampshireLymeMisdiagnosis: http://home.comcast.net/~runagain/site/?%2Fhome%2 F

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OurperspectiveonLymediseasecomesfromfirst handexperienceasallfamilymembershavebeen afflictedwiththisdisease.Whatwefindmostdisturbing isthefactthatourfamilypractitionersknewabsolutely nothingaboutLymedisease,hadauniversal misunderstandingoflabresultsandauniversal dismissalofLymesymptoms.Noneofourfamily memberspresentedwithabullseyerashandonlyour daughterrecalledatickbite.Intheabsenceofthebulls eyerash,thelihoodofobtainingatimelydiagnosisina statewiththehighestreportednumberofLymedisease casesisvirtuallynonexistent. EverypatientattendingthemonthlyLymesupport groupmeetinghasasimilarstory.Themisdiagnosisof LymediseaseisrampantinNewHampshirefueledby faultydiagnostictests.Thefirstlinescreeningtestfor Lyme(Elisa)isproducingfalsenegativesandeveryoneis toldtheydonothaveLymedisease.Afollowup Westernblottestwhichismuchmoresensitiveis forbiddenwhentheElisaisnegative.TheWesternblot isonlyallowedafterapositiveElisatoruleoutafalse positive.Howdoweruleoutafalsenegative??We dont!!(Thisiscriminal) Faultydiagnostictestsarecreatingconfusionwithinthe medicalcommunitycausingthephysiciantomissthe narrowwindowofopportunityforsuccessfulshortterm treatmentwhichisnowcreatingabacklogoflatestage Lymediseasepatients. CarlTuttle Hudson,NH JuneWhiteheadstoperasingpostswewontbeignored andlefttosufferanylonger!!!!acknowledgethefact thattheelisatestandtheguidelinesareflawedleaving innocentpeopleandchildrentosufferanddie! WendyVogt"Whatyoudotogetthroughthedayis nothingshortofheroic.Thatiswhatmydoctorsaidto memultipletimesashewatchesmebattlemywayout ofLymeandBartonellaandBabesia.Thosewordsare foreverypersonwhohaspostedhereandforevery man,woman,andchildbattlingthisdisease.IDSAcan eitherbepartofthesolutionorgetoutoftheway. Changeishappening.Andsofar,IDSAlegacyisgoingto beuncheckedepidemicandtaintedbloodsupply.That ishowhistorywillwriteaboutyouractions...ifIwas you,I'dmakechangesnow.

StaceyTumlinsonAcknowledgeandlearnhowtotreat ChronicLymeDiseasefrompeoplewhoKNOWHOW! AskChronicLymesuffererswhatworksforthemand talktothedoctorsthatsuccessfullytreatthem.Stop callingitFibromyalgiaandsayingthereisNOCURE. PumaOfThenorthIneedtogetbacktowritingmynew children'sinformational&tellallbook~IWasBittenBy aBioWeaponbutwantedtotakethetimetoadd~Itis hilarioustoseethegooddoctorsattheIDSAcontinually followingtheadviceormurderScottPetersonsmother. Denydenydeny. YetdidntScottPetersonendupinSanQuentin? Maybewhenthisisallover&donewith&theIDSAis exposedfortheircontinuedliestheycanallbehoused inaspecialjailonPlumIsland. GoodoldPlumIslandrememberthatplace?Justdont eattheplums!!! ValerieMainsWolferWeneedtocreateapublicdata baseofdoctorswhoarecontinuingtomisdiagnose patients,ornotdiagnoseatall,inlightofoverwhelming clinicalevidence.Ifaphysicianisnotcapableofmaking aclinicaldiagnosisorrefusestotreatinlightof overwhelmingevidenceofdisease,theyshouldnotbe practicing...period!IDSA,Youneedtodoyourjoband starteducatingyourdoctors...youneedtostop panderingtoaselectfewofyourmemberswhohave hiddenagendasandobviousconflictsofinterest. ValerieMainsWolferDoyouthinkbydeletingour comments,ourillnessesandstorieswillsomehowno longerexistanddisappear?Themoreyoudeleteanddo notrespond,themoreobviousitisthatyou'reguiltyas sin. TimMedearisAcknowledgeChronicLymeDiseaseand listentothefewdoctorswhoaretreatingitratherthan goaftertheirlicensetotreat.Youhaveruinedmany liveswithyourignoranceandallowedthousandsto sufferbyyourarrogance.Pureevil. BethStormontThankyoufortheopportunitytoletus expressourselves.Reliabletestingandrevised treatmentguidelineswouldbeaBIGstepintheright direction.IthinkIcanspeakforthe1600+responders sofarandtellyouthatwearenothappyspendingtens ofthousandsofdollarsoutofpocketandoutofour retirementfundsandoutofourchildren'scollege funds.Andhowaboutdevotingsomebigbucksto

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research?Theresureseemstobealotthat'sNOT knownabouttickbornediseases,evenamongthebest doctorsandresearchers. Ibetjustabouteveryoneonthissitewouldbehappyto donateblood,ortissue,orwhateverittakesinthe nameofresearchtoensureourchildrenor grandchildrenmightonedayreceivepropertestingand treatment.Oneofmypersonalwishesisthatevery campprogramandeveryschoolnursebeeducated abouttickbornediseases.I'vetoldallmyfriendsand familyhowtoproperlyremoveatickandtheyknowto saveitfortesting,butIcan'tgettothewholeworld! Lastly,IwouldrequestthatLymepatientstobetreated withdignity.I'vebeendismissedandbelittledbysome ofthebestdoctorsinmycity,aneyeopeningand devastatingexperience.Iamfightingmywaybackto healthandIhopetolivelongenoughtoseethe changesweareallaskingfor.Please,dotherightthing. SaraSchultz...butIWASdiagnosed(veryquickly,I mightadd)withdepressionandanxietydisorders. WhenIwasfinallybefridden,unabletoswallowfood andwalkunassisted,Iwaspromptlydiagnosedwith Agoraphobia.(omg??!)AndwhenIrefusedtotake theirmedications,antidepressantsandaddictive sedatives,IwastoldthatIwas"notaddressing"myso called"healthproblems".................... SaraSchultzIwouldliketheIDSAtoexperiencethe HELLmymotherwentthoughwhenadoctortoldherin 2002thatherdaughterwasDYING............. BrennaShortFaulkMoreCFS,Lyme,Fibromyalgia,and relatedillnessclinicaltrialinmoregeographiclocations acrossthecountryforpossiblenewcorrelationsand information.Nottomentionbetterdiagnosis, clarificationonillnessparameters,andtreatments. LaurieDamsellFaheyIhaveGaspedforairforSIX HOURSatatimeunabletobreathe...Onlyonedoctor newwhatIwastalkingaboutheisaLymeLiterate ILADSDoctor..itscalledLymeDisease..AirHunger... horriblewaytolive. BarbaraMcgillHello!MynameisBarbaraMcGill.Ihave beenfightingrecurringMRSAforthelast13(goingon 14)yearsandthecomplicationsfromtheinfectionsand thetreatment.IcontractedMRSAfromapieceof equipmentthatwasn'tdisinfectedproperlyIam/wasa CriticalCareRN.I'mdeterminedtogetbacktoworkbut havebeentoldI'mpermanentlydisabled.Ireallywant

toprovethemwrong,butI'mnotgettingtheaggressive treatmentIusedtogetinthebeginning.Pleasegiveme anyadvice,Docs',anythingtohelp.I'vediedtomany times,myPrimaryDr.(hepassedawayin2007)Ithrew aPE,outsidethehospitalanddidn'tgotothehospital untilthenextdaybecausemydaughtercalledmy surgeon;IhadbeenonCoumadinbuteventhoughI wasactive,IwastoldthatIhadamassiveclotinmyRt legandapieceofitbrokeoffandwentthroughmy heart,lungs,andbrain;Imusthaveapurposebecause I'mstillhere!Myprimarythatpassedhadfriendsinthe WHO,andtoldmethatifIhadtogototimbucktoo,to getbetter,Iwouldgo!! Please,help!!Myemailisblm1and2@att.netoryou canfindmeonFB.Myemployer(TheClevelandClinic Foundation)haswrittenmeoffandtheirlawyershave financiallydestroyedanddevastatedmeandmy daughter. KarenHassanIwouldliketoseetheIDSAadmitthat Steere,Wormser,Shapiro,etal.arewrong.Iwould likethemtoadmitthatthetwotierElyssa,WesternBlot testmissesalmost60%ofthetime.Itisashamethat theyallowafew"badapples"tomaketheirwhole organizationlookabunchofidiots.Asapatient advocate,myfirstbitofadvicetonewLymepatientsis tostayawayfromIDdocs! KaetheMitchellIttook31/2yearsofprogressively worseningillnessinmy14yearolddaughter,13 specialists,ahospitalization,andadiagnosisof"she's makinguphersymptoms"beforeIhappenedtopickup abookbytheacclaimedauthor,AmyTan,called"The OppositeofFate".AmyTanhasLymeandsomething struckachord:thissoundedjustlikemydaughter's story!Haditnotbeenforthatbook,Idon'tknowifmy childwouldbeseverelydisabledbynow,ordead.IDSA, whydowehavetodoallourownresearchtofind propercare?MydaughterhadanegativeLymetest earlyon(becauseIaskedforit,notadoctor),thenwent ontodevelopterriblydebilitatingsymptomsoverthe nextfewyears.LastyearshehadaSPECTscanofthe brainatColumbiaUniversity.anditshowedsevere hypoperfusionofthewhitematterduetoinfection.No wondershehadsomanysymptoms.ThankGodshe (andnowhersister)areunderthecareofabrilliant ILADSLLMDandarefinallygettingbetter. IDSA,in2012,Iwouldliketoseedoingawaywiththe ELISA,bringbackthebandseliminatedfromthe WesternBlot,andrelyonthenewbloodculturetest.I

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havemuchmoreonmywishlist,butwillsettlefor thesethings,ifnecessary.ToreadaboutAmyTan's battlewithLymediseaseandhowshefinallygot diagnosed,gotoherwebsite,AmyTan.netandlook under"SlymeDisease".(ThankyouAmy!) KaetheMitchellOh,andIliveinNY.PlentyofLyme hereandstillsomanyignorantdoctors. TeresaShankWhydopeoplethinkthatLymediseaseis allinyourhead?Ihaveaverydearfriendthatsuffers dailyfromthisdebilitatingdisease.PLEASE,don'tlet insurancecompaniessaynotothetreatmentthatcan curethisdisease.Thisisadeadlydiseasethatafflicts manypeopleandfamiliesallovertheUnitedStates. LoriArmstrongIDSApleaserecognizethatchronicLyme isrealandthatwithproperdiagnosisandlongterm treatmentwedogetbetter.Weneedamoreaccurate westernblotthatiscurrentlyoffered! SusanSpicuzzaGrayToseeisLyme,CFS,andXMRVare allconnectedsomehow.Weallhavethesame symptomswithnocure StephanieVandagriffKeepcommentingpeople,let's reach2,000comments!IDSAcan'tstopus. SherriHornMyersMyhusbandwastreatedforayear andahalfformentalillnessbecausetheLymetestsI insistedoncamebacknegative.IDdocsaidnosuch thingasLymeevenafterIgenixtestsaidpositivefor Lymeandbabesia.IfoundaLymedocinPAwho believedinusandstartedtreatmentwithrocephin. Fourmonthslatermentalstuffissooomuchbetter,but itwasverybadforalongtimewithbothofusalmost endingupdeadfromhissuicidal/homicidaltendencies. Thankfullyourinsurancepaysforthetreatments.Iwish themedicalcommunitywouldseeLymeasareal illness,anincrediblyhorribleone,whichsteals practicallyeverythingfromitsvictims. PhoebeKlemzbabesiaistheonetheyareworried aboutincaliforniabecauseit'sinthebloodsupply. stanfordisinvestigatingwhogotmybloodbutthey couldcarelessabouttheLymeandothercoinfections thattheydon'ttestfor.StephanieVandagriffithas reached2000commentstheyjustkeepdeleting. KimDeSantisGoodwinTwopeopleiknowofdiedthis weekalone.Thesearejusttwoiwastoldof.Younglives onenottreatedwellenoughjust4monthsofdoxyafter

tomanyyearsofbeingsick.Thesedeathsareyour murders.ItshouldsayhomicideIDSA.ifitwerentfor yourguidelinestheywouldbothbewiththeirspouses andchildrenandnotintheground. JenniferSchierholtSupportbettertestingforLymeand itscoinfections.AswithHIV/AIDS,itisineveryone's bestinteresttospotLymeDiseaseassoonaspossible. Timelyandaccuratediagnostictestingwillhelpmany peopletoavoidneedlesssuffering,anditwillhelpthe healthcaresystemtominimizeexpenses.Highly sensitiveandaccuratetestingforLymeisawinwinfor everyone.Pleasehelpusthisyear! KaetheMitchellSpeakingofbloodsupply,Icalledour localRedCross(Binghamton,NY)toaskifonecan donatebloodwithahistoryofLymedisease.The mamagersaidYes,aslongasyouarefinishedtaking antibioticsandarefeeling"well"today.ThenIasked heraboutbabesia.Shesaidbabesiaisfoundonlyinthe tropics.Thedonorcenteraskstheirpotentialdonorsif theyhaverecentlytraveledto"thetropics',andthen proceedsfromtherewithmorequestionsabout symptoms.WhenItoldherasimpleGooglesearchfor babesiayieldsinformationthatticksintheUStransmit babesia,shewassurprised.Oh,andno,theydonottest thebloodforbabesia.IDSA,ifmykidsdonatedblood beforetheywerediagnosedbyserologyforborrelia, babesia,andbartonella,wouldyoubecomfortable receivingtheirbloodintheER,OR,ICU?Someplacein thehospitalwhereyouwerenotconsciousandableto refuseabloodtransfusion? JasonOrloffGOTSCIENCE? MariannSawickiChronicLymeDiseaseexists,Elisatest isuselessandinaccurate,Ihavebeenbattlingthisfor years,thisisaworldwideepidemic,peoplearebeing diagnosedincorrectlyandthisisadisgracetosociety. Stopputtingabandaidonthis,whathappenedtothe hippocraticoath. JohnGoudeWhenitcomestotickbornillnessesLyme DiseaseIDSAisonewordQUACK. CarolHahnTakeyourheadsoutofthesandaboutLyme disease. SarahConner http://www.youtube.com/watch?v=VoY7G3Zqwql SarahConner31secondmessagetotheIDSA

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Lymediseaseifisolationoftheorganismisnotpartof SarahConnerDr.Yostsaw2oftheDoctors thevalidationprocess?Sorry,Itriedtohighlightthe thatwrotetheIDSAguidelines sentencebutcannot;forthosewhomadeitherebutdo DebbieSellersWengerLetsgetrealaboutthe notwanttoreadthewholearticle,Abouthalfway probability/seriousness/diagnosis/treatmentofLyme throughthisabstractisthesentence"Wenecropsied Disease.Toomanypeoplearesufferingneedlessly. coyotestodeterminetheadultheartworminfection Admitthatitisanepidemicandgetnewguidelinesin status"xVetParasitol.2002Oct16;109(12):4558. place. Validationforusewithcoyotes(Canislatrans)ofa commerciallyavailableenzymelinkedimmunosorbent NeilHueyDebbie...theCDCsaysitisepidemic assayforDirofilariaimmitis. AndyLautinIwillnotreposttothiscite.Thereasonis SacksBN,ChomelBB,KastenRW,ChangCC,Sanders obvious.Ihavemoreimportantthingstowriteto.A RK,LetermeSD. threevolumedescriptionofneuroanatomyforstarters asafollowuptomytreatmentoftheprinciple Source componentsofthelimbicbrain.TheISDA'sproblemis DepartmentofNematology,UniversityofCalifornia, whenitscolleaguescarryanantinosological, OneShieldsAvenue,Davis,CA95616,USA. antidiagnosis,antitxbias.Ientreatanyinputonthe bnsacks@ucdavis.edu clinicalcommentrenderedby StephanieVandagriff MyfatherandI Dr.GaryWormser. Abstract Serologicaltestsoffera havegone20yearsundiagnosed.We potentiallypowerfultoolfor MitchGordonSothoseof nowbothhaveperminantdamagefrom monitoringparasitesin youwhoaredoctors, wildlifepopulations. particularlyinfectiousdisease theLyme.Mychildhoodandyoungadult yearshavebeenrobbedfromme.I'm However,suchtestsmustbe doctors,whoreadthissite validatedbeforeusingthem andareseeingthis only30yearsoldandI'mnow withtargetwildlife outpouringfromtheLyme housebound from the disease. Redue populations.Weevaluatedin patientcommunityplease yourLymeguidelines.Weonlygetone coyotes(Canislatrans)the reflectonwhatwe collectivelyaretellingyou lifeonthisearthandwewantittocount. performanceofa aboutwhatthisdiseasehas commerciallyavailable donetoourlivesand/orthelivesofourlovedones,and serologicaltestusedtodetectcanineheartworm alsowhatwearetellingyouabouthowbadlythe (Dirofilariaimmitis)indomesticdogs.Weobtained265 coyotecarcassesandserologicalspecimensfrom54 medicalcommunity,worstofallinfectiousdisease additionalcoyotesfromseveralregionsofCalifornia, doctors,is/aredealingwithahugeandquicklygrowing USA.Wenecropsiedcoyotestodeterminetheadult numberofverysickpatients.I'msureyoudidn'tpick heartworminfectionstatus.Bloodwascollectedat thisspecialtybecauseyouwantedtohelpmakelotsof necropsyonfilterpaperstripsandallowedtodry;itwas peoplesicker(andfinanciallydestituteatthesame laterelutedinabuffersolution,andthesupernatant time).Butthat'swhattheleadershipofyour wastestedforheartworm.Receiveroperating organizationisaccomplishing.Isthatokwithyou?Or characteristic(ROC)analysiswasusedtoassess canourstoriesmotivateyoutotakeofftheblindersand discriminatorypowerofthetestandindicateda93% demandthatyourorganizationchangeitscourseon probabilitythatarandomlyselectedinfectedcoyote Lymeintoaforceforgoodinsteadofaforcefor wouldexhibitahigherenzymelinkedimmunosorbent ignoranceandharm? assay(ELISA)valuethanarandomlyselecteduninfected coyote.Weestimatedspecificityat96%(95%CI:92 JasonOrloffGOTSCIENCE?#1:Thisarticleisoneof 98%)for165uninfectedcoyotesandsensitivityat85% severalthatI'veseenwhereinvestigatorsvalidated (7791%)for100infectedcoyotes,resultssimilarto theirnewserologictestbycarefullylookingforthevery organismthattheyaretestingfor.Manypatientand publishedvaluesforthecommercialserologicaltest physicianshavevoicedconcernsaboutthetwotiered usedwithdogserumorplasma.Testperformancewas testrecommendedbyCDCforLymediseasediagnosis: similarforfilterpaperspecimensandsupernatantof HowsurecanIDSAbeoftheaccuracyofthetestfor frozenwholebloodcollectedinEDTAtubes(i.e.

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hemolyzedplasma).Wefoundnodifferenceintest performanceamonggeographicordemographiccoyote groups.Ourfindingssupportapplicationofthetestto filterpaperorstandardserologicalspecimensfor detectionofheartwormincoyotepopulations. PMID:12383624[PubMedindexedforMEDLINE] SusanCampbellChrisFinkle http://www.cdc.gov/ncidod/dvrd/spb/mnpages/dispag es/TBE.htm StephanieVandagriffLymediseasepettition.Butkeep postingonhere,weneedtobeheard http://www.change.org/petitions/subjective symptomsaftertreatmentofLymedisease BrittanyGoffIreallywishtheIDSAcouldseewhat murderstheyare...howdoesitfeeltokillallthepeople withLymebyignoringit?Doyousleepwellatnight? StephanieVandagriffOKIDSA.I'mgoingtokeep repostingmystoryuntilyoustopdeletingit.Bythe facebbokguidelinestherewasnothingwrongwithitfor youtodeleteyetagain. MichaelBrookinsGethelpforthefolkswith LYME...ComeupwithacureforLYME...getourleaders involved....getresearchonLYME...treatLYMElikewe treatedHIV..... StephanieVandagriffMyfatherandIhavegone20 yearsundiagnosed.Wenowbothhaveperminant damagefromtheLyme.Mychildhoodandyoungadult yearshavebeenrobbedfromme.I'monly30yearsold andI'mnowhouseboundfromthedisease.Redueyour Lymeguidelines.Weonlygetonelifeonthisearthand wewantittocount. DianeJ.MarieWhenyoutypewww.ilads.orgtheirlogo popsupinposts! BernadetteDurhamHonestly,ifIhadnevergone throughthreepainfulyearsofbeingtoldIwasanorexic, depressedandsufferedwithanxietybeforerunning simple(cdc)bloodtest,I'dneverbelievedoctorscould saythistosomeonesosickandinneedofmedicalhelp. Truthis,Ithinkmoneybehindthis...Insurance companiesandgovttheotherproblemisnopharma hasdrugtopushforitonflipside.It'samessandit's notanidsavsiladcontesthereit'saneedtojoin forcesandstartresearchingthisepidemic.Pleasehelp &hereismystoryfromSELFMAG(wormserisinit)

http://www.msnbc.msn.com/id//ns/health infectious_diseases/t/undertheradartickdiseases spreadingacrossus/#.Twjj_FmSM JoniBoydThesearethe"faces"ofchronicLyme.... Eachhasaname,eachhasastory...Pleasedon't ignorethesecries.... DianeJ.MarieWhenyoutypewww.ilads.orginyour post,theILADSlogopopsupinyourpost! ExpandPreview SarahJeanSomethingIwrotetoafriendofmine, whosehusbandisaresidentphysician: IfyourhusbandwantstomakeBIG$$$asadoctor,he shouldfocusonLymedisease(becomewhatisknown asaLymeLiterateMedicalDoctor),andmoveto California(oneofthefewstateswhereLymedocsare abletopracticewithouttheIDSAthreateningtotake awaytheirlicense(followingcertainprotocolsof course). Hewouldn'tevenhavetodealwithtakinginsurance, becausemostinsurancecompaniesrefusetopayfor mostlongtermLymetreatment.MyLymedocgets $350+fora30minuteappointment... It'sasupercontroversialtopicinthemedical communitythough.ILADS(InternationalLymeand AssociatedDiseasesSociety)isatoneextremeendof thetreatmentspectrum,andIDSAisattheother.For example,IDSAbelievesthatLymecan'texistinnorthern CA,yettheCDChasdeterminedthatnorthernCAis endemicwithtickscarryingLyme(andotherinfectious diseases).TheIDSAalsobelievesthatLymeshouldn'tbe treatedwithlongtermantibiotics,yettheytreat WhipplesDiseasewithatleasttwoyearsofantibiotics. Chronicearinfectionsaretreatedwithlongterm antibiotics,andsomeacnecasesaretreatedwithyears ofantibiotics...whichnegatestheirveryownstance, thatnooneshouldeverbetreatedwithlongterm antibiotics. Iwasoneoftheluckyfewwhoonlyhadtoseethree doctorsbeforebeingdiagnosedwithLyme(otherssee dozensor100sofcluelessdoctorsbeforegettinghelp). Ialsoamluckyenoughtohaverespondedwelltolong termantibiotics.IwasonabxforonlytwoyearsandI feelfantasticoverall,withonlyminormuscleandjoint painleftover.OtherpeopleIknowhavebeen misdiagnosedwithALS,MS,CF,etc.,whentheyactually

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hadLyme...thentheyweretreatedwithlongterm antibiotics,andnowtheyarehealthyagain. Iheardthatyourhusbandwantstofocusonfamily medicine...but,oftenthefirstdoctorapersonwith Lymeseesisaregularfamilyphysician.TheElisaand WesternBlot(WB)testsarenotoriouslyinaccurate, yieldingmanyfalsenegativeresults.Lymeissupposed tobeaclinicaldiagnosis,butmostdoctorsdon'trealize this,andrelysolelyontheElisaandWB.Ifyour husbandwastodosomeextratrainingwithaLLMDhe couldpreventmanycasesofLymefrombecomingwhat isknownasLateStageorChronicLyme. Obviouslythisisahugeissueforme...andIcan'tstand thatnewdoctorsarebeingtrainedbyprofessorsthat areeitherafraidoftheIDSA,ortheydon'tlookatthings rationally/logically. OnedoctoratauniversityinKansassaysthat: #1thereisnoLymeinKansas(what,doticksthinkthat theycan'texistinothercities,states,countries?People travel,animalstravel.Ridiculous!) #2thatpeopleshouldonlybetreatediftheyliveinan endemicarea.Theproblemwiththatthoughisthata placedoesn'thavetobe"endemic"tohaveLyme carryingticks,andpeopleandanimalstravel!Whatifa persongotLymeinanothercityorstate?Whatifa personspetmovedwithafamilytoanewcity/stateand carriedticksonitthathadLyme?Illogicalteachingis beingdonebysomeoftheseinstitutions. Basically,Lymetreatmentiswherethemoneyis.Your husbandwouldprobablyhavetoturnpatientsawayor putthemonawaitinglist,andwouldn'thavetobe shaftedbyMedicarepricesorlownegotiatedinsurance ratesinordertopracticemedicine... KathleenDicksonREPORTYOURSELVESTOTHEFBIFOR BEINGMASSMURDERERS! http://groups.google.com/group/sci.med.diseases.Lyme /browse_thread/thread/05908f369a336ecf?hl=en# EUHysteria:HoldonSmithKlineownstheproprietary AntibioticResistancedata.sci.med.disea groups.google.com Holdon,now.SmithKlineboughtCorixawhichacquired a11.5milliondollarb...

KathleenDicksonIDSAhasnointegrity,soIwonder whyeveryoneherebotherstocomplaintosuchmass murderingcrooks.http://www.actionLyme.org/ 120102;LamestreamNews(WaPo)reportsthatLyme andLYMErixareimmunosuppressive. www.actionLyme.org MakeaTLRagonistbotsowecandoawaywithticks andfungalimmunesuppresseion. StephanieVandagriffAlthoughchangewouldbegreat, weposttobeheardandtoexpressourselves,which wereusaullynotabletodoKathleen.Postyourstory,so theyknowwhattheydid. SusanCampbellChrisFinkleIknowthatsomewhereI cameacrossoneoftheDoctors(whodidnothaveany $$conflict)thatwasonthepanelfortheLyme Guidelinesspeakandadvisethatwhenthepanelwas requestedtohurryalonginordertogettheguidelines inplaceandapproved,therehadbeennotimeto discusschronicLymeatallandtheyjustsubmittedthe guidelinesforapprovalwithoutanydiscussionabout CHRONICLyme.didIseethisinthe"UnderOurSkin" documentary?ormaybeonayoutubeupload?Ijust cannotremember.Shouldn'tthe/notes/documents?of the"Guideline"PanelDiscussionsbeputoutforreview challenged??? StephanieVandagriffItwaasonUnderOurSkin.They interviewedhim. DianeJ.MarieTheIDSALymeguidelinespanel membersandtheriggedJuly'09hearingIDSAmembers aremurderersandtheyareattemptedmurderers.They belonginprison(exceptSamDonta.) DianeJ.Mariewww.ilads.org CherylMonahanPleasechangetheGuidelinesfor ProperTreatment&AccurateTesting&Educatethe doctors.Pleasedotheerightthingforthepeople sufferingthatdonothaveanyideawhathashappened tothem.IfIhadpropertreatmentIwouldnothave almostlostmylife.I'mfightingthisdiseaserightnow& it'snotpleasant.Ihaveafamily,justlikeyou,thathad towatchmesuffer&stilldoes.Idon'tlikemyfamily watchingtheirstrongrolemodelbecomesoweak.It's notfair.TheonlyFairthingtodoistomakeitright& helpthepeoplewithLymedisease&coinfections.We arenotlookingformoney,justourhealth&the preventionthatthisdoesnothappentoourloveoneor possiblesomeoneyoumaycareabout.Preventionwith

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DeniseWeaverSincethetimeofyourposting,I AccurateTesting&theProperTreatmenttostartwillbe have...slept,tookmedicine,beendizzy,tookadetox suchahelp. bathandinthebathroomwithdiahreafrommy TroyVincentSometimein2007or08,thebullseyerash medicine...isufferfromchroniclyme...now....pleasetell appeared,did'ntknowwhatitwas.BySept2010,the mehowyourweekendhasbeensincethisposting.....TY chronicfatigue,inflamedtendonsandjoints,burning eyes,sensetivitytolightandsoundsetinandicould TiffanyGonzalezP.S.I'minasuburbofChicago...But BARELYmovemyarms.Afterbeingreferredtoanortho Lymedoesn'texisthereright?PleasechangetheELISA surgeonforshoulderinjury,(andbeingtoldtherewas testtosomethingmoreaccurateatdoctorsoffices. none,butgivenaquartizoneshotanyways)myprimary Mostofmy20'shavebeenwastedawaybybeingsick. I'vemissedoutonsomuchlife.NowI'veenteredmy docrantheLymetest.2bandspos.onLymeantibody,2 30'sstillsickandsittingon bandspos.onWesternBlot, AlyssaRyvers I'dliketheIDSA torepay the"sidelines"whilemy inFeb.2011iwasgiven30 friends&familygoondates, dayrunof meforlostwages;thehouseIsold;the getmarried,havekidslive Doxycyclene,referedto twocars...todemonstrateremorsefor thedreamsIhad.InsteadIsit rheumatoloist,whosaid,andi releasingLymediseaseguidelinesthat onlinewatchingpicturesof quote,"Youdon'thaveLyme areunderscoredbycorruption... themandknowingI'llnever disease,youhaveafootprint beabletohavethat,andnot ofpossiblyhavingitinthe evenhaveachildbecauseI'm past."Nothingfurtherwas ______________________________ toosicktocareforit,and done,byanybody.September Billiejo Miller Rush Right the Wrongs You wouldn'twanttopassonthis 2011therashreturned,and diseaseandinfectionsto mysymptomsareallbutback haveCreatedByUnreliabletestingand them. infullforce.Tuesday110 WrongLymeDiseasetreatment 2012,IfinallygettoseeaID guidelines!!!YouareKillingPeople LindaLaidlawIwouldliketo doc.Hopefullythingscango Slowly. seetheIDdoctors,likethose forwardfromhere,armed whofailedtodiagnosemy withtheknowledgei've daughterwhenherLymediseasemighthavebeen gainedfromthesepost,thankyou. easilytreated,recognizethattickborneillnessmightbe apartofdifferentialdiagnoseswhennothingelse SusanCampbellChrisFinkle seemstobethecauseofdebilitatingillness.Myfour IDSALymeDiseaseFinalReport yearolddaughter,afterbeinganormalchild,became http://www.idsociety.org/uploadedFiles/IDSA/Topics_o soillthattheonlyoptionforherseemedtobe f_Interest/Lyme_Disease/IDSALymeDiseaseFinalReport. institutionalization(sincethemedicalprofessioncould pdf diagnosenothingbutwhattheycalledan'untreatable, unknown,neurodegenerativeillness').When JenJasper @SusanCampbellChrisFinkleIthinkthe 'miraculously'shebegantogetbetterafterstarting doctorwasSamDonta. treatmentfortickborneillnesses,thesamepediatric IDs,whoalthoughadmitted,'thetreatmentseemstobe TiffanyGonzalezIDSAI'dlikeyoutotakeeachoneof working'stillrefusedtonameherdiseaseandgotinthe thesecommentsandLymeDiseaseseriously...YOU wayoftreatmentshemighthavereceivedbyher askedthequestion...sonowIask,WHATareYOUgoing pediatrician.Ithinkit'stimetostoprelyingonstudies todoaboutit???I'vehadtoleavethiscountry3times thatseemtoprovide'tunnelvision'andstartlistening togettreatmentsforthisdiseasebecauseYOUguys toandwatchingpatients.Howcanitmakesensetolet havenotdoneanythingtohelp.Really?Isthathowyou afouryearolddeclinetothatdegree?Howcanitmake guyswantit,foryourowncountrytohavetoleavefor sensetofailtotreat,evenwhentreatmentisclearly propercare?Sad,butdon'tworry,youaren'tholding turningaroundaconditionthateveryonesaidwouldbe meback.I'llleaveagain,andgivemymoneytoanother fatal?Ihopeforallthosechildrenwhomightsuffer countryratherthanthegoodoldUSAifIhaveto.Iam likemychildtoseeamajorIDSAparadigmchange. myownadvocate.

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DeniseWeaveroh...Iforgot....Ialsokeepaplasticbagin agarbagecannexttomeincaseImustralph......Thank youforcaringenoughtoaskandilookforwardtoyour replyonMonday.....oh...youknowwhatelse....Ihave workedwithchildabuseforthepast33years...Iam veryproudofthechildrenwhoselivesIhave saved......yesSAVED...butwithLYMEIhavebeenunable toworkforthepast18months......amongstthese commentsfromLymepatients,youwillfindpolicemen, nurses,churchleaders....allofuswouldgiveoureye toothtogotoworkonMonday,asyouareableto do.....yourpolicieshaverenderedusincapableof helpingsociety....ofchildrenbecomingeducated......i wouldpleaselikeyoutoconsiderthecumulativeaffects ofyourineffectiveandbrutalpolicies...oneofusmay getbetterandsaveyourlifeoneday DeniseWeaverwewouldliketoheartheTRUTHfrom you.....ohmy...youneedalltheprayersyoucanget AlyssaRyversI'dliketheIDSAtorepaymeforlost wages;thehouseIsold;thetwocars...todemonstrate remorseforreleasingLymediseaseguidelinesthatare underscoredbycorruption: http://www.youtube.com/watch?v=XPGW4BnlE7Q&fea ture=player_embedded IngridBoutilierMcAdamSee,wearejusthopingthat oneofyou,anyoneofyou,findsyourmoralcompass and/oraconscious...HIGHLYUNLIKELY!!Kudostoa greatopenendedquestion,tho!;) JaniceMattoonMillerAwarenessofchronicLyme disease.Itshouldnolongerbeignored BilliejoMillerRushRighttheWrongsYouhaveCreated ByUnreliabletestingandWrongLymeDisease treatmentguidelines!!!YouareKillingPeopleSlowly... MichelleMcKeonIsufferfromaparticularlyvicious episodeofLymeEncephalitis.Ihavebeensickforover fiveyearsandhavebeentoldbydoctorsthatIsuffer fromoneoftheworstcasestheyhaveever encountered.ItisduetothelowprofileofLyme DiseaseinthiscountrythatIstruggletoreceivethe propercarethatIneed.Mystoryisnotunique;my plightmirrorsthatofthousandsofotherLymevictims intheStates.Manystudiessuggestthatonethirdof LymeDiseasepatientscontinuetoshowchronic symptomsafterundergoinganantibiotictreatment,yet theInfectiousDiseasesSocietyofAmerica(IDSA)and theUSCentersforDiseaseControl(CDC)donot

recognizeLymeasachronicillness.LymeDisease researchthoughithascomeagreatdistancefromits inceptionwhentheDiseasewasdiscoveredinthe1970s remainsinitsinfancy.Currently,duetothestatusof Lymeasatemporaryillness,longtermsufferersoften slipthroughtheholesinourhealthcareanddisability systems.ManywithChronicLyme,likemyself,were forcedtoquittheirjobswhentheybecametooillto work.UnabletogoonDisability,ithasbecome increasinglydifficulttopaymedicalbills,especially becausemostLymedoctorscannotprovidecareunder healthinsurance.IDSApleaseopenupyoureyesand changeyourguidelines.LymeDiseaseisanepidemic,it isnotgoinganywhere,anditisdestroyingmylifeas wellasmanyothers. LisaKochHanmerAbsolutelyneedtorecognizeLyme disease!!!!Itcannolongerbeignored.Itishavinga significantimpact. WendyVogtSeriously?Youaredeletingthousandsof posts.Minearegonefromyesterday.Yourorganization shouldstandformorethanIDon'tSeeAnything.2012 ispredictedtobearecordyearfortickssoyouwillhave todealwiththis.It'snotgoingawaynomatterhow manypostsyoudeleteorvictimsyouignore. BriennaReedWhyareyoudeletingposts,IDSA,like Wendysays"WewillNOTbeignored"TheLyme diseasecoverupwillbeuncovered!!Itisanepidemic, wewillgethelp,andyoucanstartbylistening! LaneyRatherIwouldliketoseedoctorsnotbeing punishedfortrulytryingtohelptheirLymepatientsjust becauseit"doesn'tfollowguidelines".Guidelinesare theretosuggestapaththatcouldhelp;but,each personisanindividiualandneedsindividualtreatment. Fivemembersofmyfamily(includingmyself)tested positiveforLymediseaseSIXyearsago,andstillhave notbeenabletoreceiveadequatetreatment.Notonly that,ittookTHREEyearstogetaLymediagnosis.From thetimeIwas12(Iam21now),Ihavegonethrough varyingstagesofillness.Ithasrangedfrommildin severityintheearlystagestodisability.Ihaven't beenabletohaveasinglejobbecauseofthisdisease, andbothofmyparentsaredisabled. Thisdiseaseisspreadingsoquicklyanddestroyingso manylives.Ipraythatfewpeoplewillhavetosufferin thefuturebecauseoftheunwillingnesstoacknowledge Lyme.

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MariannSawickiGodblessallLymesufferers,Iknow andhaveFaiththatwewillsoongettheattentionand propercare,therearefartoomanyofusoutthere. Eachofushasadifferentstorybutitisallthesame, whyshouldwehavetowaittillsomeoneprominenthas itbeforesomethingisdone,whathappenedtothe hippocraticoath?????? KarlaWilliamsYourownfounderoftheIDSADr Waisbren,doesnotagreewiththeguidelinesyouput out.Youshouldbeashamedofyourselves.Youare responsibleforthesufferinganddeathsofpeoplethat cannotgethelpfrominsurancecompaniesandwho sufferfromChronicLymeDisease.Godwillpunishyou andyours.Thesinsofthefatherwillbevisitedonthe sonsanddaughters.Andyoudeserveitmorethan anyone!AnyDrthatbelongstoyourselfimportant societyandgoesalongjusttobelongdeserveswhat theyget. PeggiMauneyOneday,oneofyouwillhavealoved onewhogetsbittenbyatick......itwillhappen...andyou willfinditimpossibletogetmedicaltreatment.Youwill seeyourlovedone'sbodyandmindstartdecayingand youwon'tbeabletodoanythingtohelphim.It'syour fault,too.Feelguilty?Betthatchangesyour perspectivesontreatmentguidelines.Pleasechange yourguidelinesfortreatingLymeDiseasebyhaving inputfromreputableLLMDs.Here,onthisFBpage,you seehundredsofstoriespostedbypeoplefromallwalks oflifewhowanttobeabletoleadnormallives,workat jobs,carefortheirfamilies,andgetmedicalhelp.It tookus3yearstogettreatment,almosttoolate.I thoughtmychildwasgoingtodie.Ididfindadoctor afterlongweeksofresearch,andI'mgettingmedicine formychild.BUTIhavetogetmedicinefromanother country......whereareyou,America?WAKEUP,WAKE UP! JessicaArmstrongDiagnosed15yearsaftermytick bite,chroniclymehaschangedthecourseofMY FAMILY'slifeirreparably.Mydaughtercontacteditin utero.Fouryearslater,afterherprogressionof neurologiccomplaintsculminatinginseizures,sheis nowimprovingontreatmentfortickbornillness.Four yearsintomyowntreatments,Iamfinallywellenough toputabirthdaypartytogetherforher.Inthe meantime,myfamilyhaslostouroptionsforgrowing ourfamily(havingmorebiologicalchildrenisnolonger anoptionandadoptionagenciesrejectedusbasedon myhealth),wehavelostallofoursavingspayingfor medicalbills,our'freetime'isspentexhausted,

advocating,doingmedicalresearchandtryingnew treatmentprotocols.Whatcanyoudo?Careenoughto makeachange.Yourmyopicguidelineshaveledto wholesalemedicalignorance.Isaweightspecialists overtheyearspriortomydiagnosis,noneofwhom knewenoughaboutchroniclymetoeventestforit.I knewnothingtheneither.IthankGodrepeatedlyfor theimmunologistwhofinallylookedatmysymptom progressionovertheyearsanddecidedtoincludelyme testinginthebarrageofdiagnostics.Thatdoctorknew enoughtotestbeyondtheELISAandinitialWestern Blotresults,bchestudiedbeyondandoutsideofyour blanketdefinitionsforthisdisease.Pleasemakethe madnessstop.Itwouldbegreatifmydaughtercould knowonedaythatshehascompletelyeradicatedthis infectionfromherbody,andcouldhavenoqualms startingafamilyofherown. CarolynJaskenManydoctorsaretrained,ratherthan educated.Theyknoweverythingthereistoknowabout theirfield.Theirboardcertified.Thatmeanstheyknow everything.Anyonewhotellsyouanythingdifferent doesn'tknowwhatthey'retalkingabout.Iwantthe IDSAtobecomeeducatedandnottrainedandstart thinkingoutoftheboxwhenitcomestodifferent diseasesandtreatment.Howaboutinsteadofa lifetimesworthofantidepressantstotreatsomatoform disorders(painisreal,butallinyourhead)forpeople withlyme,youstartdiagnosingandeducateyourselves onwhatactuallyworks!Winwin! DawnHavasWhatwouldIliketosee?Iwouldliketo seetheIDSAtostartpracticingthetrueartofmedicine ratherthanthepseudoscienceofthePharmaceudical IndustrycontrolovertheAllopathMedical establishmentandcontinuedselfservinggreed. YouhavecontinuedtoignoretheneedsofLyme DiseasePatientsaswellasthefactthatVaccineshave NOTsavedmillionsoflivesandhaveandcontinueto destroythenaturalimmunityandhealthofhuman beings.VaccineshaveNEVERbeenproventobesafe andcausemanymoreseriouschronichealthand neurologicalissuesanddiseasesthantheoneeachis allegedtoprevent. Theinfectiousdiseasesthatvaccinehaveclaimedto havestoppedhadalreadybeeneliminated/declined yearspriortothevaccinesevenbeingcreated.Standup andbringbacktheinitialtruepurposeofmedicine. Startcuringthecausesratherthanjustthesymptoms.

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StephanieVandagriffI'mstillwaitingforaresponse. Youneedtodoanewpostansweringeverybody's questions.Otherwisethisisabigslapintheface.You askedforfeedbackandwegaveittoyou.Pleasehave theprofessionalcurtesytorespond.Ifyouhaveenough timetodeletecomments,thenyouhaveenoughtime toanswerethem. SherriElsworthStephanieperfectlystated!Seethegirl totheleftofmesheismy11yearolddaughterwho wasdiagnosedwith2ndstageLyme.Ididn'tknow anythingofLymeuntilshewasdiagnosed.Wearenow intheLymegame.Ourlastdoctorwesawwhoisa neurologistinRosville,CApointblanktoldmeLymeis veryuncommoninCaliforniaandthebloodtestare veryinaccurate.Wewereseeinghimtoseeifshehad NeroLyme.Hewasbasicallytellingushowforsuredo weknowshehasLyme.Ican'tbelieveit,itreallyistrue thepoliticalgamethatisplayedwithourkidsprecious lives.PleasePleaseIDSAhaveaheartandnotthelove ofmoneychangeyourguidelinesandeducateproperly aboutLymeandtreatmentneeded.Someofuscan't affordtoseeLymeSpecialistsoourkidssufferall becauseofmoneyandselfishgainofaPoliticalLyme gamethatisplayedwithourkidslives. JolRuhlmannIneedaneffectivecureformy seronegativechronicLyme!IDSAcouldbeginthisyear byrecognizingthatchronicLymediseasereallyEXISTS! ReneeBiondoVredevoogdhelpwithuschroniccases ofLymethathad12weeksofantibioticsbackin1990's andhavehadsymptomsreturn(cannotworknowandI lovedmyworkasarehabilitationcounselorstresswas mytrigger).HavenueroLymenow. KarlaLehtonenDearIDSAandallchronicLyme patients, Pleasepaycloseattentiontooneofthemostimportant newdevelopmentsinLymediseasetestingwhichisthe introductionofthefirstcommerciallyavailableBorellia culturefromAdvancedLaboratoriesinSharonHillPA. Initialstudieshaveshownthat80%ofLymepatients whoaresymptomaticandthathavenotbeenon antibioticsforatleastamonthwilltestpositive.This testhasthepotentialtoturntheentirechronicLyme controversyonitshead.Itwillallowmanypatientswho arestillsymptomaticafterantibiotictreatmentsto provethattheyarestillinfectedandthatfurther antibiotictreatmentiswarranted.

Fortheinitialpressrelease: http://www.lymedisease.org/news/lyme_disease_view s/newlymetest.html Forthemostrecentpressrelease: http://www.advanced lab.com/news/borrelia_culture_update.phpExpand Preview ScottReedThursdayat9:47a.m.theIDSArespondedto us"IDSAwantstoencourageopendialog...IDSAtakes Lymediseaseveryseriously,formoreinformationvisit: http://www.idsociety.org/Lyme" ThislinktakesthereadertotheIDSALymepagewitha linktothe"TenFactsYouShouldKnowAboutLyme Disease". OK,letshaveanopendialog: IDSAfact#1:Lymediseaseiscausedbybacteriacalled Borreliaburgdorferithatisonlytransmittedtohumans whentheyarebittenbyaninfectedtick. DIALOGRESPONSE:Therearemanydocumentedcases ofBorreliaburgdorferibeingtransmittedinutero,and manymorehavetoldyouthisintheirposts. In1986,WeberreportedacaseofLymeinfectionina newbornbaby.Themotherhadbeenbittenbymultiple ticksduringherfirsttrimester.ShedevelopedanEM rashseveralweekslater.Shewastreatedwitha standardcourseoforalpenicillinforsevendays,three timesaday.Thebabywasdeliveredattermand appearednormal.Duringthenext23hoursthebaby developedbreathingproblemsanddied.Autopsy showedbrainhemorrhages.Spirochetescompatible withBorreliaburgdorferi,theLymespirochete,were demonstratedinthebrainandtheliver.Initialtestingof themothersbloodwasnegativeforantibodiestothe Lymespirochete;however,atalaterdateherfrozen bloodtestedpositiveforIgMantibodiesbytheELISA test. MarkowitzpublishedastudyofLymeandpregnancyin 1986.Hedescribednineteenpatientswhowere infectedduringpregnancy.Fiveofthesehadadverse outcomes(onefetaldeathat20weeks,highbilirubin levelinafourweekprematurebaby,webbedtoes, blindnessanddevelopmentaldelay,andanewborn rash).Thirteenofthenineteenhadreceivedantibiotics. Theauthorsconcludedthattherewasnoproofthat Lymewasresponsiblefortheadverseoutcomessince allofthemweredissimilar.However,therewasa

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consensusthatthiswasanabnormallyhighfrequency ofadverseoutcomes,andthatpregnantwomenwith diagnosedLymeshouldbetreatedimmediatelywith penicillin. WilliamsandcolleaguesconductedastudyinaLyme endemicareainNewYorkofumbilicalcordblood.Of 255infantstested,10.2%haddetectableantibodyto theLymespirochete.Of166infantsborninanon endemicarea,2.4%haddetectableantibodies.Therate ofbirthdefectsdidnotdiffersignificantlybetweenthe twogroups;however,thefirstgrouptendedtobeof lowerbirthweightandsmallerfortheirgestationalage, andtendedtohavemorejaundice.Theauthors concludedthatthesedifferenceswerenotsignificantly different.Aglaringflawinthisstudyisthatitonly includedlivebirths.Sincemiscarriages,stillbirthand perinatalinfantdeathswerenotincluded,the possibilityofcongenitaldefectspossiblyassociatedwith Lymeandincompatiblewithlifearenotincluded. Therefore,theauthorscontentionthatnoassociation existsbetweengestationalLymeandcongenitaldefects shouldbeviewedwithskepticism. FromtheCDCwebsite"AlthoughnocasesofLyme diseasehavebeenlinkedtobloodtransfusion,scientists havefoundthattheLymediseasebacteriacanlivein bloodthatisstoredfordonation.Individualsbeing treatedforLymediseasewithanantibioticshouldnot donateblood." OverwhelmingstudiesandresearchconfirmthatIDSA FACT#1isfalse. IDSAfact#2:2.Toinfectitshost,aticktypicallymustbe attachedtotheskinforatleast36hours. DIALOGRESPONSE:Thedatasuggeststhisisnottrue. Studiesthatlookedatimproperremovalofatick showedmuchshorterattachmentsarepossible.In severalmammalstudiesinthelate1980s,itwasshown inmanyspeciesincludingdogsthatwithinhoursoftick attachmentthattheLymeorganismiswitheverybeat oftheheartcirculatingthroughtheentirebody.The spirochetesmotilityallowsittopositionitselfintothe cracksandfoldsofabloodvesselwall.Borrelia burgdorferihasatropismoranattractiontoattachto theendothelialcellsliningbloodvessels.Within2448 hoursthebloodbrainbarrierhasalreadybrokendown andtheinfectionispotentiallyalreadyestablished withinthebrain.(1989ImmunologicalMethodsof BorreliosisColdSpringHarbor)

OverwhelmingstudiesandresearchconfirmthatIDSA FACT#2isfalse. IDSAfact#5:Anyonewhohassymptomsforlongerthan sixweeksandwhohasneverbeentreatedwith antibioticsisunlikelytohaveLymediseaseiftheblood testisnegative. DIALOGRESPONSE:Borreliabacteriaaregenetically equippedtochangetheirantigenicappearance.There arewellover1000BorreliaisolatesofBorrelia burgdorferithatarestrainvariationsintheUSAalone. ThestrainusedinthebloodtestB31,isneverfoundin nature,andwhenB31testswerecomparedandtested byindependentresearchersinMadisonWI,France, Austria,andUnitedKingdom,B31hadshortcomings andneverhadtheessentialantibodydetectionthatthe testsdevelopedfromlocalwildstrainsproduced. Andasmentionedinthepreviousresponsedialogonce Borreliabacteriabreachthebrainsdefenses,absolutely noLymeserologytestshortofanautopsycanruleout infectionwithinthehumanbrain. Andtherearemanyotherwellknownproblemswith thecurrenttestforBorrelia.Thefactthatsomanyhave postedwithadiseasethat"doesn'texist"alsoproves IDSAfact#5isalsofalse. IDSAfact#6:MostcasesofLymediseaseare successfullytreatedwithafewweeksofantibiotics. Usingantibioticsforaverylongtime(monthsoryears) doesnotoffersuperiorresultsandinfactcanbe dangerous,becauseitcancausepotentiallyfatal complications. DIALOGRESPONSE:InhistestimonybeforetheJoint MassachusettsLegislativeCommitteeonPublicHealth, ILADSPresidentDR.Cameronstated"...in2000when Drs.Wormser,Steereandothersconcludedthat chronicLymediseasedoesnotexistasadistinct entity.TheguidelineswereadoptedbytheInfectious DiseaseSocietyofAmerica(IDSA).Despite35yearsof researchandthousandsofLymediseasepatients described,theIDSAconcludedthatchronicLyme diseasedoesnotexistasadistinctentity. Whyisthisrelevant?In1977Dr.Steerebelieved antibioticswereineffective(SteereACetal:Annalsof InternalMedicine86,685(1977).Becauseofthisbelief manypatientslikeCarolGoodmansufferedandgot worse.Itwasn'tuntiltheearly1980'sthatDr.Steere realizedwhatotherdoctorstreatingLymealreadyknew

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thatantibioticsfrequentlyworked(SteereACetal: NEJM312,869(1985). Therearethousandsofdocumentedcasesandmany poststoyou,IDSAmembers,thatbackupthefactthat amajorityofLymecasesarenotsuccessfullytreated withafewweeksofantibioticsandthosethatseemto befrequentlyrelapseafterthetreatmenthasended. SomeofDrSteere'sownsuccessstorypatientshave relatedthefailuresof"afewweeksofantibiotics".This unfoundedandmistakenviewofafewIDSAdoctorsis onceagaincausingpainandsufferingtothousands whilemakingtreatmentoptionsexpensiveandfew. IDSAfact#6isfalseandthecurrentguidelinesneedto berevoked. You(IDSA)askedforanopendialog.Please,I respectfullybegofyoutolistentothevoiceofthe suffering.Showcompassiontothemanywhohave struggledwiththesocial,theeconomical,andthe emotionalbattlesofthisdisease.Dowhatisright,help themandfuturegenerationsbyrevokingyour guidelines,helpfurthereducateyourdoctorsandthe publicaboutthisdebilitatingdisease. Thankyou, RobertS.Reed Fatherofa19yearolddaughter,bedriddenwith ChronicLymeDisease LoriDitzlerHagarmanWhereisyoursoulandwhereis yourconscience????Peoplearesickanddyingandyou arepartlyresponsible! HardaWagnerIamnotaffectedbyLymedisease myselfbutmanyofmyfriendsare.Rightthismomenta dearfriend,33yearsofage,sufferingsince12years fromlatestagechronicneurologiclymedisease,ison theplanetoacountryfarawayfromGermany,hisvery lastchanceandhope,becauseinGermanynodoctor canhelphim.Iamprayinghewillsurvivetheflightand IamaskingyoufromIDSAWHYisitpossibletoreach thisstage? AlsoIwouldliketoknow,youfromIDSAaswellasfrom yourfamilymemberswillyoualsostoptreatment after3weekswithDoxycyclineafterhavingatickbite? Ihopeyoureadeachsinglepostingonthiswalland takenecessaryactionhowevernotin2012,not TOMORROWbut,please,please...STILLTODAY!

Eachsingledaypassingistoomuchformillionsofsick people. BeateSchollWhatIwouldliketoseefromtheIDSAthis year,isthatyounolongerignorepatientswithchronic LymeDiseaseandstartadmittingthatachronic persistentLBinfectionexists.Haven'tyouswornthe Hippocraticoath"Firstdonoharm"?Lymehastaken myfuture,23yearsago.MaybeLymedoesnotkill,but ittakesthelivesofhundredsofthousands.I'mlivingin GermanywhereLymeBorreliosis(LB)ishighlyendemic, andbecauseofyouroutdatedguidelinespatients strugglehardtofindproperdiagnosisandtreatment. PleasefindananswerforchronicLB. JeanHemondAccordingtoDrEvaSapiresearchgroup standardDoxyforonemonthrevertsspirochetesto CystandLforms.Myown25yearswiththisdiseaseand theexperienceofthousandsofLDpatientssuffersfrom yourbiasedguidelinesthemselvesthatarethemain factorininducingchronicLymedisease. DonnaZukaitisFalconeMyheartbreaksreadingthese. CarlTuttlePleasereadtheletterbelowaddressedto ProfessorArminAlaedini,correspondingauthorofthe Lymediseasestudy:AntiBorreliaburgdorferiAntibody ProfileinPostLymeDiseaseSyndrome http://www.ncbi.nlm.nih.gov/pmc/articles/PMC312251 5/ UniversityMedicalCenter, 1130SaintNicholasAve.,Room937, NewYork,NY10032. DearProfessorAlaedini, Pleaserefertothefollowingexcerptfromyourstudy: Significantlyhigherantibodyreactivitytowardthep31 bandonWBandtowardtherecombinantOspAprotein onELISAinthePLDSgroup,maybeindicativeofa longerthanassumedcourseofactiveinfectionin affectedpatients. Thismayhavebeencausedbyadelayinthestartofthe appropriatecourseofantibiotictreatmentand/oran undocumentedrepeatinfection(s)inmanyPLDS patients.Thisfindingwouldbeinlinewithprevious studiesindicatingthatdelayedtreatmentisassociated withincreasedpostLymediseasesymptoms(20).

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Ichasedanunresolvedfatiguefortwelveyearsbefore diagnosedwithlatestageLymeinthefallof2008. ExhaustionwassoprofoundthatIwasevaluatedfora possiblemitochondrialdiseasepertheattachedclinical notefromDrMarkKorson,TuftsMedicalCenters MetabolicClinic http://home.comcast.net/~runagain/Dr%20Korson%20 Summary.pdf Objectiveevidenceofseriousdiseaseincludedhigh elevationsofcarbondioxide inblood, http://home.comcast.net/~runagain/Arterial%20Venou s%20Blood%20Gasses.pdf CardiopulmonaryExerciseTestreviledlowMAXO2 consumptionduetocardiovascularlimitation http://home.comcast.net/~runagain/CardioPulmonary %20Exercise%20Test%20Results.pdf andaminoaciddeficienciesinsixteenoutoftwentyone tested. http://home.comcast.net/~runagain/Amino%20Acid%2 0Lab%20Results.pdf ThesearespecialtytestsmostLymepatientswillnever experience.AtthattimeIwastotallydisabledandon oxygen Ididnotseemeasurableimprovementfromantibiotics forsixteenmonthsandwasbedriddenwithHerx reactionforthefirstthreewhileonBiaxinand Plaquenil.IexperiencedafourmonthHerxfrom Doxycyclinewhichprovokedseverejointpainrequiring VicodinforpainreliefasMotrinprovidednobenefit. HerxheimerwasalsoexperiencedwithBicillinLA injectionsandRifampin.Icontinuetohaveboutsof exhaustionwhichrequirerestbutInowrecovermore quickly. AllfamilymembersarebeingtreatedforLymedisease andwerefeaturedonNewHampshireChronicles LivingwithLyme;NewHampshiresGrowing Epidemic. http://www.wmur.com/chronicle/24181311/detail.htm l Ourstoryisnotuniqueasthemajorityofpatients debilitatedbyLymemissedthenarrowwindowof opportunityforsuccessfulshorttermtreatment.The disablingsymptomsarenotthedailyachesandpains oflivingasyourcolleagueGaryWormserbelieves whilewastingtaxpayersdollarsfundinghisstudy SUBJECTIVESYMPTOMSAFTERTREATMENTOFLYME

DISEASEThepetitionagainstthisstudyhasgathered signaturesfromacrosstheUS,Canada,UK,Ireland, Belgium,France,andtheNetherlands.Petitionsite: http://www.change.org/petitions/subjective symptomsaftertreatmentoflymedisease AdvancedLaboratoryServicesBorrelliaculturetesthas proventhatpersistentinfectionorchronicLymedoesin factexistbecauseadirectcultureidentifiestheactual bacterianotantibodiestotheinfection. http://www.wmur.com/chronicle/24181311/detail.htm l Ireceivedauthoritativecommunicationfromwithinthe laboratorythatthelabisseeingpositiveculturesin80% ofsymptomaticposttreatmentLymepatient specimens.Theseresultshavecomeafterhundredsof tests. BestRegards, CarlTuttle Hudson,NH03051 Website:NewHampshireLymeMisdiagnosis http://home.comcast.net/~runagain/site/?%2Fhome%2 F LeighAnnRaneyTuckOpenyoureyesandseewhatthis diseaseisdoingtous!Havehadthisandthe coinfectionsforovertenyears!Noinsurancewillcover MD'sthatknowwhatweneedtosurvive!! MichelleMurphyAccordingtomicrobiologistTom Grier,(whowasdx'dw/MSthenLyme),"Fora spirochetelikeBorreliathatisaslowdivider(24hrs undergoodconditions)togetthesamelethalexposure duringcellwallsynthesisassaytreatingstrepbacteria, youwouldhavetotreatforoneyearand5months." Nevermindtheotherformsthespirochetemakes."Just onebrainautopsythatfindsspirochetespostantibiotic treatment,candisprovethemisguidedpositionthata fewweeksofantibioticsissufficientto"cure"Lyme Disease,andthatworkhasalreadybegun."Dr.Andrew Pachner,Neurologist,infectedmicew/B.burgdorfeeri andonemonthlaterextractedthesurvivingbacteria fromthebloodandfromthebrainsoftheinfected mice.Whathefoundwasbasicallythatthebacteriain thebrain,overthecourseofseveraldivisions,changed radicallyfromthebacteriathathestartedwithand injectedintothemouse'speripheralblood.The spirochetesisolatedfromthemousebrainnow expressedanewsetofgenes.Thebrainstrainbacteria

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askedmeabouttickbites,ormyseptecemiaof wereisolatedfromtheimmunesystemandappeared unknownorigin.Pleaseunderstandthedamageiscostly tobeanewisolatewithnewanddifferentsurface andthegenerationstocomeshouldnothavetosuffer. proteins."Thisisavery"smart"pathogen.whyareyou Mandatorytrainingevery2yrsforeveryinfectious nottakingthisseriously?Whatisinitforyoutowithold diseaseDronLymeandcoinfections,similartoHIV treatmentforcountlesssymptomaticpatients?Ego? /AIDSmandatorytrainingrequiredbyveryhealthcare Greed?"Whohassignedtheirguidelinesintheblood ofdyinglymepatients?" professional.WearethenewAIDS....andweare sufferingneedlessly.Pleasedon'tletanotherLyme DelCarmenNosurprise.Havingworkedinthemedical patientdieonyourwatch. societyforXXPLUSyears,havepersonallywitnessed thewasteandCORRUPTNESSwhichtrulyexists.Andfor SusanLarsenIwouldliketoseetheIDSAbecomea what?TheALMIGHTYDOLLAR.AndforWHOM?The worldleaderinthetreatmentandcureforlyme sufferingofHUMANBEINGS.DISGUSTING!Iam disease.Theworldiswatching.Let'sputthepastbehind usandshoweveryonewhatAmericacando. THOROUGHLYnotonlydisgustedbutfeelagreatdeal ofangerandsadnessofwhatprevails.Ofthatwhichis beingsweptunderthetable.Attheamountofb.s. AoifeRyanIwouldlikeIDSAtohelpallthesufferersof whichoccurs.IamSORRYforallofyouwhoare lymediseaseworldwide,byrecognisingthatChronic SUFFERINGduetowhathasbecomeasystemNONEOF lymediseaseexistsandfacilitatingdoctorstotreatit. USMAYTRULYTRUSTIN.XO Toomanypeopleare DeniseWeaver P.S.....pleasestop ~Del. sufferingneedlessly.Lives havebeen,andcontinueto deletingposts...thatisjust beruined.PleaseSTOPIT SarahRuminskiREVISEYOUR disgusting...howdareyoudeletethe NOW GUIDELINES.Howmany postsoffolksreachingoutfor NancyKargelIDSAIhope millionsofushavetosuffer help....gosh,Ihopenooneeverdeletes thatthereasonmypostwas andeitherdieorwantto deletedisbecauseyouread becauseoffinancial/political yourlifeline. it,recordedwhatIwrote,so corruption?ThisisNOTacut youdidn'tneeditanymore... anddrydx.THISISACLINICAL DeniseWeavertherearemanyfolkswho DX.Wakingupeverymorning andfightingformylifeis havekepttrackofeverysinglepost....if HolleyUcantspellitanyway difficultenough;beingdenied yoursdiffer,youwillhavesome treatmentbasedonthe I'm27+yearschronicwith explaining to do to the public. recommendationsofIDSA Lyme,Babesia,Bartonella& (whichMedcojustdidtome) Anaplasma.I'monly39!67 isdepolorable;ifIhadcancer medicalprofessionals&MDs in14years&Iwasnotdiagnosedcorrectlyuntil2009.I I'dbeonthenightlynews.Do.The.Right.Thing. NEED...WeALLNEEDyoutostophidingyourheadsin thesand,acknowledgethetruthsofthenightmareswe MonikaKrajkaL.Y.M.E.howcanyoupeoplestillignore arelivingANDletusEDUCATEYOU&therestofour it?! societysowecancontrolthisepidemic.Wemustall worktogethertostopthissuffering!Youarenotmy LymePixieHavingbeenmisdiagnosedforover30yrs,I enemy.IamsurroundingyouallwithlightandIam layherewonderingwheredoIstart.Howabout prayingforyourenlightenment.Wecandothis teachinginfectiousdiseaseDrshowtolookatblood, together! readlabs,andtolookoutsidetheCDCguidelines.Iwas turnedawaybytwoprominentinfectiousdiseasewitha DeniseWeaverSunday...didyougettogoto positivelymeandseveralcoinfections.Wheniinsisted Chuch,maybeoutfordinner,atriptotheparkormall, onbeingtreatedforbabesiosis,theybothrefused. BothDrsstated"theydonottreatchronicLyme". makeahugeSundaydinner,takethedogforawalk,play Why?Icansendyouatimelineofmisdiagnosis, withyourchildren...wedidnot.....shameonyou.Many hospitalizations,medicationsthathurtmyimmune ofthesefolkstodayarestayingbytheirchildrens system.Methotrexate,steroids,painpills,vioxx.All bedside,stayingintheirPJ's,tooweaktomove...MayI maskingmytruediagnosis.Notoneofthe100sDrever suggestyouvisitus...youaremorethanwelcometo

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cometomyhome,readmyLymerecordsfromthepast 10years,lookatpicturesofmeandreadmyresume andjobexperiencepriortogettingthisdisease. NicoleRandazzoLongIslandisaknownendemicarea andnotoneofthe20doctorsIsaw2yearsaftermytick bitewouldtreatme.Thereisn't1doctoronallofLong Islandwhotreatsproperlywithcomboantibioticfor longterm.NotoneofthehospitalsinLongIsland acknowledgeortreatforLymeandallbecausetheyare afraidiftheydotheywillbeinvolvedinalawsuitand loosetheirlicensetopracticemedicine.Soincaseyou werewonderingifyourstrugglestofindadoctorhad somethingtodowithwhereyoulived,itdoesn't. DeniseWeaverP>S>.....pleasestopdeletingposts...that isjustdisgusting...howdareyoudeletethepostsof folksreachingoutforhelp....gosh,Ihopenooneever deletesyourlifeline. DeniseWeavertherearemanyfolkswhohavekept trackofeverysinglepost....ifyoursdiffer,youwillhave someexplainingtodotothepublic SherylHotlenRivettI'dliketoseecurrentresearchand attentiontothevastnumberofpeopleinthiscountry whodon'tdiscovertheyhaveLymeDiseaseuntilitis latestage,disseminatedandintheircentralnervous systemsandbrains.Yourguidelinesareinadequate, researchinadequate,andunderstandingofthis populationofpatientsunfortunate."ChronicLyme"has becomeacatchalllabelthatisnotspecificenoughand thatignoresthecomplexofsymptomsthatgrowin complexitywhenphysiciansdon'taccuratelydiagnose Lymeinitsearlystages.Pleasecallitwhatitis:late stage,disseminated,andMOVEON!Moveonto research,intelligentanswers,andhonorthemany patientnarrativesthatareoutthere.Thetruthliesin thenarrative.Andintheclinicalknowledgeofthebrave physicianswhotreatthispopulation. ChristelMansonAsyouhaveread,Lymeisseriously impactingmanyofourlives.Pleaseopenyourmindand yourheartstoseethatthisisn'tafakedisease.Real peoplearehavingreallybadproblems.Ihavespenta smallfortuneonattemptingtogetpregnant,havinga childbornwithaseizuredisorder,andthenmyown healthfailingduetoLymeDisease.Futher,thetwolater incidentswouldn'thaveoccuredhadINOThadlyme disease.AllIwantistogobacktothelifeIpreviously had.Youholdsomuchpowerinhelpingtheworldsee thatLymeisreal,andpeopledosufferfromthis.We

arenotcrazy.....Iprayyouwillhearthecriesofus,and takethetimetoconstructivelyreviewourissue!HIV andFibromyalgiausetobe"fake"illnessesalso.....you canchangethis,andmakeallofourlivessomuch easier.Thankyouforyourtime! MelanieGaulkeSaltzmanThankyouforasking!Iwould liketoseemorelymeliteratedoctors.EspeciallytheID docs.TheytoldmethefirsttimeIsawthemtheytested meforAIDS.ThenRAandonitwent.Timewasticking byandIwasgettingworse.Ifinallygotintoseethe 'specialist'intheinfectiousdiseasedepartmentatone ofthelargestuniversitybasedhopitalsinOhio. MelanieGaulkeSaltzmanIwastreatedquiterudely,he beliitledmeandmysituationandthenconcludedby exclaimingthatchroniclymeisnotrealandthereforeI needtoseekhelpfromsomebodyelse! MelanieGaulkeSaltzmanAlso,thefirstIDdocsaidthat lymediseasedoesnotexistinOhio!WRONGO! NicoleRandazzoWHENISTHEIDSA,THEENTIRE MEDICALCOMMUNITYANDTHEUSGOVERNMENT GOINGTOACKNOWLEDGETHATTHEBACTERIASTHAT CAUSESLYMEANDASSOCIATEDCOINFECTIONSINOUR BODIESISTHEBACTERIATHATTHEWORLDHASBEEN WARNEDABOUT?THESEBACTERIAAREHARDTO DETECTWITHHUNDREDSOFSPECIES,CHANGESTOAT LEASTFIVEKNOWNFORMS,ISCAUSINGMANYOFTHE KNOWNAUTOIMMUNEDISEASESWHICHHAVENO CURESANDONLYEXPENSIVETREATMENTSANDIS EXTREMELYDIFFICULTTOTREATBUTISCURABLEWITH CHEAPOFFPATIENTANTIBIOTICSINTHECORRECT COMBINATIONFORABOUT3YEARS!(afewIDSAlame studiesthatshowthatwithoneantibioticgivenfora fewmonthsdidnotimprovepatientsymptoms5years posttreamentisnotenoughtojustsayantibiotics doesn'tworkandthereforedon'thelpsickpeople) THESEBACTERIAAREOUTSMARTINGALLOFUS,EVEN THEIDSAANDWEARENOTGOINGTOLETTHE MEDICALCOMMUNITYANDTHEUSGOVERNMENT SWEEPTHEOVER300,000+CDCESTIMATEDNEW CASESUNDERTHERUG! MelanieGaulkeSaltzmanPLEASE,PLEASEtakethetime andwhateverenergyittakestolistentolymeliterate docs,educateyourselfandothersinyourfield!Many peoplewithlymed.arelookingforsupport.WENEED THESUPPORTOFTHEINFECTIOUSDISEASESOCIETYOF AMERICA!

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MelanieGaulkeSaltzmanThankyouverymuchfor yourtime.PleasedosomethingtoHELP! MelanieGaulkeSaltzman MelanieGaulkeSaltzman, Athens,Ohio JeannieBonetpelsIhavebeenreadingfordaysnowall thesecomments.Whatisitgoingtotakeforyouto understandwhatallthesepeoplearesayingandwhat theyaregoingthrough?WeAREseriouslyill,soareour childrenandwholefamilies.Whatwillittakeforyouto HELPUS.Wearedyingaslowmiserabledeathand thoseofuswhoaren'thereanymoreeitherbecause Lymedidkillusorwedecidedwecouldn'tlivelikethis anymore.Pleasechangeeverythingthatyouaredoing incorrectlyandhelpsaveourlives.Youneverknow,it couldbeyouwithanastytickbiteoroneofyourfamily members....thenwhat,youarenotimmunetotheticks poison,justlikeweweren't.It'stimetostepinto2012 andDOTHERIGHTTHING!!! JeannieBonetpelsP.S.NorthernCalifornia....New endemicarea,justincaseyoudidn'tknow. JoniComstockPleasesupportusbyjoiningthisevent! http://www.facebook.com/events/310053762368288/ KellyDemersIsearchedandsearchedformyoriginal post..IguessIhitanervewithyouIDSA...Canthandle thetruth??Removingpostsafteryouaskeduswhatwe wantforthenewyear..Isonlyprovingwhatweallthink ofyou..Itissodisgraceful..Doyouseeallthese commentsIDSA??Wearesick..Notbeingtreatedas humanbeings.Wewantwhatisfair..Tobehealthy again...Wouldn'tyou?Weareangry,becauseyoudo notlisten.Whathappenedtoourhumanrights?Its disgustingthatafterhowlongofusyellingforhelp,you nowyouasksuchaquestion??YouareplayingGod withhumanlives..recognizetheissues..Theyareright inyourface..Weneedhelp,bettertreatment,better knowledgeablephysicians,andthemostimportant thing...ALLOWthephysicianstotreatusaccordingto ourbodies..Notbywhatyouthinkisthetreatment plan..Sincebeingsick,withchronicLyme,myeyeshave beenopen..Iamsaddenedbymyowngovernment,By you,byPharmaceuticalcompanies.Byphysiciansthat followyourignorantguideline's.Byhowyoublackball Physiciansthattrulycareandaretryingtotreatus.I haveneverdislikedaorganizationasmuchasIdo yours.Youcannotuseoneguidelineforhundredsof thousandindividuals,IFNOTmoreofusoutthere!Its rightinyourface,yetyouchoosetoignoreit..Ileave

youwiththis,Wewillcontinuetofightforourrights, wearenotgoingaway,thereissomanynewpeople gettingsick,untilonedaytheworldischronic..I promiseyou,Youcantkeepusallquiet.. MarkMoccioAstartwouldbeaccuratetestingfor Lymeanditsmanycoinfections.Actuallyknowingwhat youhavewouldbeahugereliefforusandaloteasier forourLymeliteratedoctorifyoucanfindone.Instead weareblindlyingestingalltypesofmedicines supplementsherbalsjustprayingthatsomethingmight work. Forover20yearsIvebeenlostinsidemyself.Never allowedtobethepersonIcouldhavebeen.TimethatI willnevergetback. Letsforgetaboutthepastanddosomethingtodayto preventthisfromhappeningtoanyoneelse. Pleaselistentoallthesepeoplewhohavesuffered physically,mentallyandfinanciallyasaresultofyour guidelines.Onedayitcouldbeyouorsomeoneinyour family.Maybethenyoullunderstandbutbythenitwill betoolateasyourguidelineswilldefinitelynotsave you. MelindaFulfordanhonestevaluationofthelyme guidelinesyouhavethatkeepsourunsurancefrom payingfortreatmentforuswhohavethisdebilitating disease.Itdoesn'tendafter28days.Ifonly! SummerFrundelOneofmydearestfriendswas misdiagnosedforyears.Afterbeingsickwithlyme diseaseforsolong,shefinallywasdiagnosedcorrectly. TODAY,sheislivingherlifeagainandactivelyinvolved inhelpingothers!Pleasestopdenyingthatchroniclyme diseaseexistsandspendyoureffortsonbettertesting, diagnosisandtreatment! RaviKamepalliLotmoreinvolvementinwoundcare world.IDSAithinkhasbeenrathernoninvolvedin woundcare.Notmanyinfectiousdiseasesdoctorsare givenhandsontraininginwoundcare. PaulaGalloYourstrategytomarketmedicationsfor otherillnessesthathidelymediseaseiswhatImight callPsychopathicmedicine.Stoplyingtopeople,We don'tneedabandaidhere.weneedrealsolutions. LizbethBinksCarneystopalltheCYA'ingandopenup tothetruthbeforemorepeoplearetragicallyharmed.

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services/opportunitiesbutIamtoosicktoevenbegin SusanMuikIwouldliketoseetheIDSAreviewand reviseyourLymeDiseaseGuidelinestoreflecttheILADS lookingifIknewhowtolook.Ineedatherapistwho LymeDiseaseGuidelines.Pleasesee specializesinworkingwithsomonewhohasbecome http://www.ilads.org/lyme_disease/treatment_guidelin disabledduetochronicillnesssotheycanhelpme es.html managestress/grief/lossandonandonIdon'tknow wheretolook,howtofindoneifthereisoneand insuranceagainisahugebarrier.Ileavethe BrianSilva @BillK.ployornot,you'reright:(Thisis apartmentmaybeonceamonthtogogetmylabwork aboutgreed($$$),power,pride,etc...Doingwhatis donethatisit!Ineedhelpgettingsomanyformsof rightorwronghasnobearinginmostcorporateor politicalrealms. treatmentandIhavebeenstrugglingwiththisfor YEARS.Andtherearemanymanymorelikemeor KathleenAngotti ...acknowledgementthatwhatwe worseoffwearedyingandweneedhelp. haveisreal,betterpublicrelationstohelpothers understandwhatweare CindyReiterLutkenhaus dealingwith,morescientific Howaboutrepresentingthe RobTanner Iwouldlikeyoutodisband researchforbetter chronicLymeptsand since you have your heads buried deep in treatmentsandhopefullya recognizingthatchronic thesand,areadisgracetothe cure,easieraccessto Lymedoesexistandallowing knowledgabledoctorsand MDstotreatthiswithout hippocraticoath,andhaveleadtothe treatmentcenter,having fear ofretaliationfrom financialruinoftensofthousandsof moretreatmentoptionsbe insuranceormedicalboards? chronicallyillpeopleforcedtopayfor coveredbymostinsurance theirowntreatmentasyougivethe providers(forthe PetraBoninDearmembers recommendedamountof oftheInfectiousDiseases insurancecompaniescovertodeny time),arevisedsetof SocietyofAmerica treatment.Youareadisgraceto guidelinestoinclude medicine. treatmentforchroniclyme EvenifyourLymeBorreliosis andcoinfections,educating guidelinesarenotaffecting otherspecialistsonthediseasesothattheycanbetter medirectly,theyaffectmeindirectly. treatpatientswithmultiplehealthissues...Theseare IamfromGermanyandourguidelinesarebasedonthe justafewofthethingsIwouldliketoseefromtheIDSA IDSAonesandtheybringtremendoussufferingin in2012basically,whenyousumitup,wejustwanta Germanytoointermsofrefusalofappropriate littlesupportandsomehopethatthingsmaychange. therapybyclinicians,tonameonlyone. InGermanytoochroniclymeisnegated,downplayed AprilDawnAwayforpeoplewithseveredisabling andignored.Ithereforehopethatyouchangeyour chroniclymediseasetogetthesupporttheyneed guidelinesaccordingtotheneweststateofscience,that medicaltreatmentandotherwise.Somanyofusareon yourecognizethechronicformoflymediseaseandthat medicare/disabilityandthatisareonlyformofincome. youdiscardthe2weekantibiotictherapyasgold Thetruthisthatthetreatmentsthathelprelieve standard. symptoms(thatIhavefoundanyway)areNOTcovered byinsuranceandIamnotevensuretheyareavailable Insteadtheclinicianstrainingshouldbestrengthened, orhowtogetthemiftheywereforexamplewater researchmustbeacceleratedandthereamsoflyme therapyfacillitythatistherighttempaturenotfilled patientsaroundtheworldmustfinallybeheardand withchemicalsthatmakemesickormassagefor takenseriously. someonewithLyme/fibromyalgiathatisaffordableona weeklybasisasitisneededforthatmatterIdon't ShannonFiorelloIwentundiagnosedfor16years.All evenhavearegularprimarydoctorthat"believes"in chroniclymedisease(Idon'tthinkshebelievesin threeofmykidswerebornwithlymebecauseIdidn't fibromyalgiaeither)butbeingonmedicareIamluckyto knowthatIhaditwhenIgotpregnantwiththem.My mom,sister,andhusbandhavelymeaswell.My haveadoctoratall!!!Ineedsomeonetohelpmefind husbandistheonlyonewhoseimmunesystemis whatisavailableandmedicallyappropriatefor fightingitonit'sown.Therestofusneedongoing someonelikemetheremaybeseveral

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treatmenttostayontopofit.Pleaseopenyoureyes. Therearesomanypeoplesufferingbecauseofyou. RobTannerIwouldlikeyoutodisbandsinceyouhave yourheadsburieddeepinthesand,areadisgraceto thehippocraticoath,andhaveleadtothefinancialruin oftensofthousandsofchronicallyillpeopleforcedto payfortheirowntreatmentasyougivetheinsurance companiescovertodenytreatment.Youareadisgrace tomedicine. JudyTitusDrslookingforrealanswersandnot influencedbyinsurancecompaniesandthelikes. Recognitionofinfectiousdiseasesthatexistare transmittedbyvariousmethodsanddifficulttotest forbecausetheyattacktheimmunesystemBabesia andBorreliatonameafew! StephanieVandagriffYouhaveabolutelynoreasonto deleteourposts,besidescensoringus.Thisisthe6th postofminethatyouhavedeleted.Theyhaveallbeen respectful.Ionlytellmystoryandrespondtoyour question.You'recomingoffveryshadyandhurtful.So I'mgoingtoretailmystoryandrespondtoyour questionyetagain.MydadandIbothhaveLyme Disease.Becauseofyourguidelines,wehadgone untreatedfor20years.Wenowhaveperminant damagebecauseofit.Mychildhoodandyoungadult yearshavebeenrobbedfrommebecauseofyour guidelinesandgeneralattitudetowardsLymeDisease. I'monly30yearsoldandIamnowhousebound.Redue theGuidelinesonLymeDisease.Pleasedon'tmakeme rewritethis.Ihavearighttobeheardandhavemy storytold. DianeJ.Mariewww.ilads.org DoloresClaesson http://sites.google.com/site/floridalyme/memorial page/vincentsota DoloresClaessonLymeDiseaseJeannetteandAl's Story www.youtube.com TheygotLymediseasein1994.Thewifewasbitbya tickandhadabullseyerash.Lymediseasecanbe sexuallytransmitted,andthatishowthehusbandgot it. PatriciaMarksMcDermottAssomanyothershave said,weneedhonestyfromyou.Openyourmindsand seethetruththat'soutthere.Ifcertainmemberscan't

divestthemselvesofconflictsofinterest,thenitisthe dutyofIDSAtodivestitselfofthesemembers.Bring truthandhonestybacktothemedicalcommunity.How manyofyouaregoingtowakeuponemorningandask yourselves"WhathaveIdone?"!!! KaetheMitchellDearIDSA,thankyouforaskingforour opinions.Ihavetwochildrenwhohave neuroborreiliosis,babesiosis,andbartonella.Iassume youknowthesymptomsfortheseinfectionsandhow theycancauseachildtoloseyearsoftheiryounglives ifleftuntreated,asisthecasewithmychildren.Ihavea question;perhapsyoucanhelpmeunderstand.Ifa personisbittenbyatickthatisinfectedwithanyofthe knowntickbornepathogens,andthepersonisbittenin aspotontheirbody,saythescalp,glutealfold,axilla, behindtheear,betweenthetoes,oranyoftheother hiddenplacesonthebody(useyourimagination)and doesnotseeabull'seyerash,notbecauseitwasn't there,butsimplybecauseitwasnotreadilyvisibledue toitslocation,andthenthispersonbecameillbecause, let'sjustsayitactuallyWASattachedforyour36hour timeframe.Thatcanhappen,right?Doyouagreethat thispersoncouldgoontodevelopatickborneillness? Didnotknowwhyheorshewassoill?Surelythere mustbeaplaceinyourtreatmentguidelinesforthis person.Would2weeksofdoxycyclinecurethis individualiftheycametoyou,say,5yearsafterthetick bite?Wheredoesthispersonfitin,inyouropinion?Do theyfallthroughthecracksandgoontodieorcommit suicide?Whatisthefutureforourperson,alifeon disabilityspentinanursinghome,becausetheydonot haveLymebecausechronicLymedoesnotexist?This wouldn'tbepostLymesyndrome,wouldit,sincethey neverweretreatedinthebeginning?Pleaseanswerthis forus.Thankyou. ValerieMainsWolferFifteendoctorsmisdiagnosea FloridafirefighterwithALS.Hiswife'sresearchledds themtothecorrectdiagnosisofLymeDisease. http://sites.google.com/site/floridalyme/memorial page/vincentsota AmberChapmanAndrianakosIDSArecognizesLyme onlyasanacuteratherthanachronicdisease.Imliving testimonythatLymeisindeedchronicanditisan infectiousdiseasethatyoueitherhaveoryoudont. Youcantsortofhaveit.Andhavingitishell. Mystoryisthis:Twoweeksafterbeingbittenwhileon vacationinConnecticutinJulyof2005,Iwasunableto walk.ItoldthedoctorsIfelttherewasaconnectionto thatbite,butduetolackofinformationand

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misinformationaboutLyme,noneofthemtestedme untilNovemberofthesameyear.Bythattime,the Lymehadmovedoutofmybloodintomytissuesand organs.LymedoesNOTliketoliveinthebloodand, unlessaspecialtestisused,resultswillbenegative.A falsenegativeresultisexactlywhatIreceived. Afewmonthsago,IwentbacktothesameInfectious DiseasedoctorIhadseenin2005foranotherLyme test.Itestedpositivefortwobandsversusthefive bandstheIDSArequiresforadiagnosis.Aswithmost doctors,hebelieveditwasimpossibleformetohave chronicLymeandsohereferredmetoaneurologist. Thatneurologistwasmy42nddoctorwho,again,was unabletohelpmeandwasunwillingtotreatmeforan illnesshedidn'tbelieveexisted. Iknowitexists.Everysecondofeveryminuteofevery day.HavingLymeislikehavingabarbwiredelectrical fencewrappeddeeplyaroundallofmyjoints.Im constantlyreceivingjoltsofelectricitybecausemypain isnervepain.Icryandscreamoutfrequently.Iwillget electrical"CharleyHorses"allovermybody,sometimes allatonce.IfeellikemyentirebodyisonfireandIm constantlyinthebathtubwithepsomsalts.Itistrulya terrifyingdiseasetolivethroughandtolivearound. AndIcouldntlivewithmyselfifIdidnttrytodo somethingeverydaytotrytorightthewrongsthat preventchronicLymefrombeingdiagnosedandtreated andthusstopthishellfromhappeningtoothers. Finally,afteralmostsevenyearsofpainandsuffering andbeinginawheelchairformanyofthoseyears,I havebeendiagnosedwithlatestageneurologicalLyme disease. IhavefinallyfoundaLymeliteratedoctorandhopeto survive.I'mheartbrokenthatmydiseasecouldhave beencaughtandtreatedwhenIfirstcontracteditin 2005butforthepoliticsthatareinvolved.Theseyears ofsufferingformeandmyfamily,ofseeing43different doctors,havebeenneedlessandcostly.We'vespent wellover$100konmedicalexpensessince2005and thatwasbeforemydiagnosis.FightingLymehasbeena cripplingfinancialburdenthatwearetryingdesperately tomanage.NowthatIhavebeendiagnosed,my insurancewillonlycoverfourweeksofantibiotic treatment.Mydoctorsfeelitwilltakeeightmonthsto twoyearsifIamtosurviveLymeandthecoinfectious diseases. Lymeiscostlyinmanyotherwaysaswell.I'mmostsad andangrythatIamhurtingtheonesIlovethemost. Takingcareofmeisnoteasyfrombathingto

administeringmymedicationstolisteningtomescream inpain.ThisisnotwhatmyhusbandandIhadplanned forourlives.Mostimportantly,thereisthematterof whatwewantmorethananythinginthisworldto haveababy.Itisnownotclearifthatwillbepossible. EvenifIamabletorecoverenoughtogivebirth,there isahighprobabilitythattheLymewillbepassedtoour child.Whatthen?Ourchildissickandwe'refacedwith anothersetofdoctorsandinsurancecompanieswhose handsaretiedbytheIDSAguidelines?Whenwillthis end? Soyes,Ihavequestions:Whyistheeffectivenessofthe testnotmoretransparenttothepatient?Moreover, whyisthequestionableeffectivenessofthetestnot takenintoaccountbythephysician?Inmyopinion, doctorsareafraidtogoagainsttheguidelinesofthe InfectiousDiseaseSocietyofAmerica(IDSA)asthat couldputthematriskforlosingtheirlicenses.Howcan thatbetrue?YetItrulyhavefaiththatallofusare capableofevolvingandthattheIDSAdecisionmakers willhearthecallofhumanityandrisetotheaidof thosewhoneedthemmosttheirfellowmenand womenwhoneedmedicalcare,respectfortheir suffering,andhopefortheirfutures. ChristinaHuhnMoreintegritywiththegoaloftryingto understandthecomplexityoflymediseasesothat peoplecangetwellandlivetheirlives. CrystalDesertDiamondCarterTheinhumanepeople behindtheevilguidelineshavenofearofGod JeanHemondIttook8yearstoobtainaclinical diagnosticbyaMDandexpertuniversityresearch microbiologist.TheElisacamebackNegative. JeanHemondIdidloose41/2yearsofsickleave atworkhadtoretire3yearsearly JeanHemondHadallthelistofsymptomsuptolyme rage,spendhundredofthousandsdollarsintests scanners,specialistsofalldisciplines, JeanHemondIwastaggedasahypochondriacbylocal ID,ButItoldthemwasbeforeandbittenbyticksthatI pulledout,backpackingswampsinfectedbysnakes. Howdareyourmembersbesoarrogant! MarciaStagnaroAsaChronicLymeDiseasepatient,I wouldliketofindaprimaryphysicianwhowillaccept mydiagnosisofChronicLymeDiseaseandwhowillalso

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acceptMedicareasmyinsurance.Becauseallthe Doctor'sIhaveseen,otherthanLymeliteratedoctors, tellmethataccordingtotheCDCthereisnosuchthing as"Chronic"LymeDisease,Imustseektreatmentfrom LymeliteratedoctorswhoMedicarewillnotcertify becauseMedicaredoesn'tapproveoftheirpractices, whichhaveyettobeapprovedbyCDC.Iwouldliketo seeIDSAstarttopayattentiontothethousandsofus whohaveChronicLymeDiseaseandarefloundering becausetheSystemwillnotacceptourdiagnosis.I personallyknowofsevseralpersonswhoareteetering onthebrinkoffinancialruins,myselfsoontobeamong them,becausetheyhavenootherchoicebuttopay foprmedicalcarewhichshouldbeprovidedbymedical insurance.TheLymeliteratebranchofmedicinehas beentryingtoreachoutandeducatetherestofthe medicalworld,buttonoavail. MarciaStagnaroIwouldliketoseeIDSAtakearolein closingthisgap. ChrisPowellopenyourmindsandgetonwithtreating sickpeople.wearetiredofwaiting,tiredofsuffering andseeingourlovedonessuffer.enoughBS.Doyour jobs,please.changetheguidelinessothatsickpeople cangetbetternotspend$inthemedicalsystembeing schleppedtodocafterdoc...unlessthisisamoney makingscheme? DoloresClaessonWehaveallbeenquiteprofessionalin respondingtoyouandgivenhowyouhavetreatedusit isnotwarranted!Ithinkwehaveshownthatthebrain trustlieswiththeveryillpatients.Iamsuperproudof theresponseshere! DavidKopelmanLymediseaseguidelinesrewrittento reflectitstruenature/effectsandanunderstanding aboutpropertreatment!!!!NotFALSEunderstanding!!!! LauraKlingerKolaskiAcureforlyme SatKartarKaurwhatareyoudoingforthethousandsof sufferersofLYMEDISEASE??wearefedupwithbeing ignoredandtoldwedonthavethis.WHYistherenot betteraccuratetestingavailible??thetestsareonly about50%accurateandpeoplearemisdiagnosed and/orREFUSEDtreatment.WakeupAmerica StewartDeanAnunbiasedacceptanceoftherealityof chronicLymediseaseandanhonestefforttohelpthose whoselivesareblightedandthreatenedbyit...instead

ofthecurrentwitchhuntingalaSemmelweissofthose whodohelpus. MarkAsherItwouldbereallygreatifanyoneatthe IDSAactuallyreadanyofthesecomments.Butthat,as weallknow,isnotallthatlikely. JonathanArnowIwouldlikeanyofthedoctorsthat holdswayoverthetreatmentprotocolforthisdisease towalkafewdaysinmyshoes.Sickwiththisdisease forover30years,threekidssickwithandpossiblymy wifealso(onekidisOK)andwonderingwhy,whenI askmyregulardoctorfortreatment,helookstheother way.Thepediatriciansaresoundereducated.Ihave beentoldbyaformerpediatricianthatdoctorsfrom ourStaterunhospitalhavepurposefullysetoutto 'reeducate'thepediatriciansaboutthisdiseaseand haveinitiatedapogromagainstanydoctorwhotreats kidsaggressivelyforthisdiseaseperhapsknowingthat ignoringitwillgetthemmorepatients.Heknowsabout thedisease,God,hiskidsgotitalso.Iamlookingat havingtogotoaLLDoctorwhochargesabundlethatI don'thave.MycousinwasdiagnosedwithParkinson's andtoldtomakeherselfcomfortablefortherestofher time.IgotherthenameofaLLDoctor,whohaspulled herbackfromthebrink.Howcomeshe'sfeelingbetter now?Iknowoftwootherfellowswhohavediedfrom thisdisease,weresickandfamilywasadvised,by reputabledoctors,thattheyhadM.S.andA.L.S.Both familieswereadvisedtomakethebestoftheir situations.Itriedtoconvincethemtoseektreatment. AliceJohnsonGiuntaIfyouwereRealMD'sthattook anoathtodonoharmyouwouldreallylookatthe researchandthousandswhoarestillsick...28daysof medsdoesnotwork!Over30yearsofdebilitating Lyme,nowMS(wewillneverknowifoneleadstothe other)mydaughter'slifehasbeendevestated,ourbank accountdepleated...andallmembersaffectedforlife. It'sabouttimeyoucaredaboutpeople,notmoney! RichardBrookePowellIwouldlikeyoutomakeit possiblefordoctorstotreatChronicLymesuffers properlyandwithoutfearofprosecution.Givethem thecorrectandhonesttruthaboutwhatahugemistake youhavemadeoverthepastthirtyyearsandadmititis timeforaradicalchange. MichaelBrochinisawidowmakerheartattack associatedwithlymedisease?

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JackieZimmermaniwouldliketoseedoctorsthatdo nothaveaconflictofinterestwriterealisticguidlines forchroniclyme. StephanieVandagriffIagreeJackie. MarkBloodOnethingyoucoulddoistoupdatethe LymeDiseaseinformationontheIDSAwebsite,whichis patheticallyoutofdate.Your"WhatisLymeDisease" videofeaturesapatientwhosaysshewas100% improvedafter3daysofantibiotictreatment,andwho endshercommentsbysayingthatshe'lltellothersthat "Ohyeah,itwasnobigdeal".Thisperfectscenario, wherethepatienthasavisiblerashandtreatment occursimmediatelyafterinfection,shouldnotbe depictedastypical.Your"evidencebased"treatment guidelinesfor"Late"Lyme,whichimplythatany infectionisgoneafter28daysofantibiotictreatment,is indefensiblebecausethereisnoreliablewayto determinewhentheLymespirocheteiseradicatedfrom thebody.Iknowfrompersonalexperience(asaLyme patientwhowentundiagnosedfor7years)thatmuch longercoursesofantibioticsaresometimesneeded. SaraSchutzChangeyourguidelinesforLymeDisease treatment!Thisdiseaseisanightmare,andyour guidelinesarecausingmanypeople'slivestobe destroyed.Pleasebehonestaboutthisdisease.Please, pleasetakethesemanycommentsaboutLymeDisease seriously.Wearesuffering! PatBannermanEnoughofthispoliticalstuff.Getback todoingyourjobwhichislookingatthescience&upto dateresearchonlyme..Helpallofthosethatsuffer fromchroniclyme! JanetO'LaceyI'dlikeanexplanationastowhat happenstospirochetesiftheyarenotcompletely knockedoutbyantibiotics.Ifthere'snosuchthingas chronicLymeDisease,wheredothespirochetesgo? Syphiliscanremaindormantfordecadesandthen resurfacemuchlater.Pleaseexplainwhythe spirochetesthatcauseLymeDiseasearesodifferent. Howdoyouknowforcertainthat"PostLymeDisease Syndrome"isn'treallysecondaryorlaterstageLyme Disease? MichelleGagnonYouerasedmycommentalso.I'm saddenedbythiscauseIamstillhopingthatyouwill makeitright,allowdoctorstotreatchroniclyme withoutfearandadopttheILADSguidelinesthatis madebyProfessionalsthatactuallyTREATLyme.Look

intothescienceofit.Icanseewhyyouaredeleting postsbecausethetruthhurts,butthisdoesn'teven begintotouchallthesufferingyouhavecaused.YOU CANmakeitright! GretchenAhlersLymeisquiteabitmoregenetically "smart"thansyphilis,bytheway... ValerieMainsWolferIwouldlikeguidelinestobe supportedbyevidencebasedresearch,notopinions. "Morethanhalfofthecurrentrecommendationsofthe InfectiousDiseaseSocietyofAmericaaresupportedby expertopiniononly,notevidencebasedresearch." http://www.medscape.com/viewarticle/735511 CherylRaeMullenbachShoultsIhaveverydearfriends withLymedisease.ThereAREtreatmentsforit,both herbal/vitalistaswellastraditional/atomist.Bothneed tobemadeavailabletopeople. Regardingthefollowingherbalregimen,"chewing"juice meanstotakeasmallbitintothemouthatatimeand makesureit'smixedwellwithsaliva. http://www.herballegacy.com/Incurables.html SuzanneSatyaDevHowaboutareviseoftheIDSA guidelinesforthetreatmentofLymeDiseaseandit's coinfections?Thereneedstobeanopenprocessthat allowsallstakeholdersaplaceinthediscussion, includingdoctorsknowntotreatLymedisease.Who wouldknowbetter? LeslieMcBainIamfromCanada,andyourguidelines trickledowntoushereaswearefollowingsuit.Iwas misdiagnosedwithMSandspentyearsbattling differentillnessesofunknownorigin.(over30years)I wasthendiagnosedwithLymeandBartonellaand cannotgettreatmentaswearefollowingyour guidelines.Ibelievedoctorsshouldnotbepenalized anywherefortreatingChronicLymeandpeopleawith vestedinterestinLymeshouldnotbeontheboard. Peoplearehurtingeverywhereandneedhelpfromyou. Canyouturnthisaroundanddotherightthingand stopthesuffering?Itcouldhappentosomeonecloseto you.Nooneisimmune.Manyyearssuffering,many yearsunabletowork,manyyearsnotbeingapartof society.Awastedlife! AnnJacobsSeronelloIwouldlikemoreresearchon howtotreatLymeDiseaseanditscoinfections.There aresomeprotocols,butmoreneedstobedone.Instead

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5.EugeneShapiro,elsewhereadmittedtoreceiving ofsayingthatitmaynotexistincertainareas,lets grantsforLymevaccines,testifyinginLymerelated admitthatitdoesandtreatitappropriately.Maybe medicalmalpracticeactions,andreviewingLyme theninsurancecompanieswillpayforthetreatments disabilityclaimsforMetropolitanLifeInsurance andthoseinfectedcangetbettersoonandgetonwith Company." theirlivesinsteadoffightingtobeheard. MichelleGagnonExpertsonthebestwaytoCOVERUP JudyLandisSettingDearIDSA,Tohave Lyme(farfromexpertopinion)andgetmoneyfor aknowledgementofchronicLymeandtohaverevised, realistictreatmentguidelineswhichreflectall researchforotherdiseasesthathavebeenusedas known/relevantinformationaboutLymeandassociated Lymecoverups.Thereissomuchevidenceoutthere tickbornediseaseswouldbefantastic.Thiswould thatisreal,notmadeupresearchlikeIDSA'sresearch. eliminatesufferingbeyondwhatcanbeimagined.With HowcometheREALresearchisignored?Thiscoverup longtermoralandIVantibiotics,Iamnolongeraquad, hasbeengoingonfordecades.JustreadthebookCURE UNKNOWNInsidetheLymeEpidemicbytheSCIENCE gettingmylifeback,andfeelingaliveagain!Iamso journalistPamelaWeintraub.TheIDSAneedstostop thankfulforphysicianswhotreatchronicLyme.Ifwe lookingthroughtheeyesof couldallworktogetherto ignoranceandstartfollowing diagnoseandtreatLyme,this BarbPerryKinsella Donotignorethese theHippocraticOaththat wouldtrulybewonderful... comments and cries for help. Everyone swearstopracticemedicine Mostsincerely,JudyLandis hasastory,andtheyarealmostthe ethically. Setting same."Denial"Pleasestopignoringthat PumaOfThenorthIcan't ChronicLymeDiseaseexists,peopleneed BarbPerryKinsellaDonot ignorethesecommentsand imaginewhytheIDSA treatment,peopleneedhelp.Peoplewith criesforhelp.Everyonehasa guidelinesforLymedisease Lymediseasearesickandtiredofbeing story,andtheyarealmost arepurposelymisleading. thesame."Denial"Please sickandtired.Verysickpeoplearebeing "FiveIDSApanelistswere stopignoringthatChronic ignored by the Medical Systems in foundtohaveconflictsof LymeDiseaseexists,people Canada,theUSAandallovertheworld. interest: needtreatment,peopleneed help.PeoplewithLyme Wakeupandlistenplease!!!!!!! 1.Dr.GaryWormser,the diseasearesickandtiredof panelchair,receivedfundsfromBaxterand beingsickandtired.Verysickpeoplearebeingignored Immunetics,andisoneofthefoundersofDiaspex. bytheMedicalSystemsinCanada,theUSAandallover theworld.Wakeupandlistenplease!!!!!!! Wormseralsolaterdisclosedhewasreceivinggrants thatwererelatedtoLymediseasefromBioRad, PatsySwinsonIam60yearsoldanddonotremember Biopeptides,MerckandAstraZenecaandthatheowned equityinAbbott,andbeingretainedinsomemedical atimeinmywholelifewhenIdidnothavesymptoms, malpracticecasesinvolvingLymedisease. whichIonlyfoundout5yearsagowereLymeand2co infections.GrowingupandbeingsicklyasIwas,Iwas onantibioticsmanytimes,sometimesforoveramonth 2.R.J.Dattwyler,isaspeakerforPfizerandapart atatime.Nevertheless,afterallthoseantibiotics,Istill ownerofBiopeptides.LaterDattwylerdisclosedhehad hadall3infections.Soobviouslyamonthofantibiotics afinancialconnectiontoBaxterandservingasan arenotenoughinthosecasesinwhichapersonhashad expertwitnessinmedicalmalpracticeactions. themawhile.Iamnotaloneinthissituation.Ihavelost countofhowmanyfellowsufferershavepostedthe 3.J.J.Halperin,wasanexpertwitnessonbehalfof sameproblem,onlytobeignoredordeleted.Itisnot Lymerix(GlaxoSmithKline)thefailedLymevaccine. possibleforthismanypeopletoimaginethattheyare 4.AllenC.SteereisaconsultantforP.J.Krauseand toosicktocrawloutofbed,sometimesforyears.What Baxter.Thisisadeveloperofadiagnosticprocedurefor areyouafraidof?Whycan'tyoujustdotherightthing acoinfectionofLyme.Laterdisclosedtheyfoundout andswallowyourpride?Please. SteerehasafinancialconnectiontoGlaxoSmithKline andViramed.

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MaryCorselloVilcheckIappreciatethisstream~Thank youforthequestion~It'sevidentthatmanyofourlives havechangednotonlyasaresultofinfection(s),but severegapsinthesystem,inadequatelabtests,and medicalpolitics.Iaskyoutoworkwiththemedical communitytosupportlabstoperfect,offer,and providecoveragenotonlyforbettertesting,butalsofor adifferentprocessforthelab'screening'ofLymeAND associateddiseases.Itisperplexingandmaddening that,inmanyarenas,aphysicianwillONLYordera screening'reflex'testfortheLymeantibody...howcan thisbe?TheWesternBlotisflawedenough.Butatleast thedoctorwouldpotentiallybetrying'ifhe/she ordereditrightaway.Instead,thedoctorlooksforthe antibody..ifnotpresent,theWesternBlotdoesnot evengetordered/tested.OFcourse,inthecaseofa patientpresentingwithabullseye..anewbite... antibodiesmaynotevenbeformedyet.Andthus,the patientissentoutwithwhatmaybeafalsenegative. Howcanthisunethical,costcutting,notsmart,awful processbe?TheWBlotisnotgoodandIdonot advocateit;however,ifdocsaretouseit,theyshould useitresponsibly!P.S.Ihavespokenwithnumerous nurses,docs,labs,etc.aboutthis..mostagreeandadmit thattheyhavenotthoughtofthat.Really? CindyHallClarkInthelate's,myyearolddaughterwas hospitalizedwithahighfeverfollowingatickbite,she wasgivenIVabxandreleasedwiththestandardthree weeksofDoxy.Sixyearsandoverdoctors(includingID specialists)later,shewasfinallydiagnosedwithLyme andBartonella.Shewasunabletoattendschoolfor overyears.Duringthattimeshewasfortunateenough tobetreatedbytwoveryskilledLLMDs.Shetookanti bioticsformostofthattime,includingalmosttwoyears onIV's.Thankstothetreatmentshereceived(muchof whichwasnotcoveredbyinsurancethankstoyour guidelines)shehasrecoveredtothepointoflivinga fairlynormallife(thoughnottotallysymptomfree).She isoneoftheluckyones.Wefounddoctorsthatdonot adheretotheIDSA'streatmentguidelines.Itistimefor theIDSAtowakeupandacknowledgethatit's guidelinesareantiquated,inaccurateandharmfulto thelivesofpatients.Afterall,asdoctors,youtookthe HippocraticOathto"donoharm." MaryCorselloVilcheckAdding~OurlocalMedical TeachingCollegeDepartmentofInfectiousDiseases doesnottestfor,treat,oracknowledgeLyme.There arenodoctorsinmycitywhoareintheknowabout this.Iamamentalhealthclinicianandamdismayedto witnessinfectedclientsbeingdiagnosedincorrectly,

thenmedicatedaccordingly.Wemustgettothe businessofdoingthisright.Thanks. Larry'n'RheaHitsmanStopspreadinglies.Changeyour guidelinesonLymetreatment.Openyourminds.Open yourhearts.TheevidenceofChronic/LateStageLymeis overwhelming. LynnOlsonTumaIwouldlikeachangeintheIDSA's Lymediagnosis&treatmentguidelines.Iwouldalso LateStage/ChronicLymetoberecognizedarealdisease sothatthoseofussufferingwithLateStage/Chronic Lymecangetthelongtermantibiotictreatmentthat wesodesperatelyneed. Noneofuswho'vecontractedLymeDiseaseaskedfor it.Itisnotourfault.Wejusthadthehorriblemisfortune ofbeingbittenbyatinylittletickthatwasinfestedwith bacteria.AndIthinktheonlythingmostofuswantisto getwellsowecangetbacktolivinglifeandenjoying ourshorttimeonthisplanet. NancyBaumgartnerDoyouservepatientsorasystem? Thatistheonlyquestionthatmattersatthispoint,and IhopeitmatterstotheIDSA. JackVandagriffIDSA,Ipityyouforthecontemptyou haveearnedfromgood,sufferingpeople.Youare patheticexcusesfordoctorswhohaveputmoneyand politicsabovehumanlife.WhenthisgoesREALLY public,whichIguaranteeitwill,whatwillyousayto yourchildrenwhentheyaskwhyyouletsomanysuffer anddie? PatsySwinsonIhaven'tseenanysuggestionshere aboutwhatwewantfromyouthatsay"Let'sjustkeep theLymeguidelineswealreadyhave",soifyou'rereally seriousaboutyourquestionthenmanyofussincerely hopethatyouwilltaketheanswersseriouslyaswell. Surelyyouwouldn'thaveaskedifyoudidn'twantand expecthonestanswers.Ahugemajorityhaveanswered yourquestion.Nowpleasehearthem.Livesliterally dependonyou. AnnetteDennisO'DonnellLikemostorallofthe peopleonhere2,000,peoplesofar,atinyfractionof thoseworldwidewhoaresickfromChronicLyme Diseaseandcoinfectionswewouldlikeyoutochange yourrecommendedguidelinesfortreatmentoftick borneillnesses.MostMD'sfollowyourpoorly researched,insufficientprecedentandsoareleftwith anoftenfatal,alwaysdebilitatingpersistent

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infection.Justlikeallthepeoplewhosufferrelapsefrom syphiliswhichisamuchlessvirulentstrainof spirochete. CamAlteeBrownIknowacardiologistwhowastreated atJohnsHopkinsforLymeforoneyear.Soadoctor thereobviouslydoesn'tagreewithyourguidelines either. Yourrecentguidelinespanelexcludedthevery physicianswhoareonthefrontlineswiththesickest patients. Wormser'sconflictsofinterestaresomonumentalhe shouldhaveneverbeenonthepanel.Don'tyouheisin thisfightsodeepthathecanNEVERtellthetruthorhe willlosethesupposedcredhehas.Itislikeaskinga killertoruleonhisownappeal. LukeMillerYoucouldstartwithanapologyto physicians,patientsandthegeneralpublic.Weteach ourkidstheimportanceofutteringthesimplewords,"I amsorry."Nooneisabovecommondecencyand respect,pleaserevisitandrevisetheguidelines, eliminatethelobbyistsandeducateasmanypeopleas possibletohelpcurbthispandemicthatwillsurely leavethedecedentsof"TheGreatestGeneration" disabled,helplessandhopeless. LukeMillerPleaseeliminateyournonprofitstatus.The conflictsofinterestaredetestable. LukeMillerWhyistheIDSAnotaccreditedbythe BetterBusinessBureau?Let'sstartthecomplaints. AmyTurnerIwouldlikeyoutodoyourJOBof PROTECTINGthepublic,notpretendingthatserious, devastating,epidemicchronicLymedoesnotexist!Take youreyesoffyourbankaccountsandlookinsteadatall theneedlesssufferinggoingonbecauseofyourbogus testandyourfairytale"guidelines."Somuchsuffering (andmoney!)couldbeavoidedifLymepatientscould getproperdiagnosisandtreatmentquickly.Getsome REALdoctorsandREALscientistsandsomeHUMANSin IDSA.StartHELPINGtheAmericanpublic.Openyour eyes,telltheTRUTH,andDOYOURJOB!!!!!! AmyTurnerIwouldalsoliketoseealloftheISDA committeemembersagreetobeinfectedwithLyme andthenfollowtheirownguidelines.Youwouldchange themquickly.

HoustonLymeSupportGroupWeareagroupof hundredsofsufferersintheHouston,Tx.area.Weare mostlyprofessional,welleducatedadultsalongwitha largenumberofinnocentchildren.Wehaveahuge medicalcenterherewithmanyIDSAmemberphysicians who:1)refusetotakeusaspatientsduetotheLyme "quagmire"theyknowthatlongertermantibioticsare indicatedbutdon'twanttohavetodealwiththeTMB &licenseconcernsor2)theytreatusbutwon'tgive morethan4weeksofantibioticsandwhenwearenot welltheysay"thereisnothingmoreIcando"weare pushedoutofsystemstillveryill!!Howcanagroupof physiciansturntheirbacksonpatientsbecausea medicalguidelines"cookbook"saystheyarewell. Physiciansaresupposedtotreataccordingtothe patientsclinicalpictureandnottoa"list." Manyofusaremedicalprofessionalswhofeelbetrayed bytheconventionalsystemwehavebeenapartoffor somanyyears.Weareforcedtotravelthecountryto findthefewbraveLymeliterate(ILADS)doctorsthere are,resorttodoctorswhodon'treallyknowwhatthey aredoingsincemanycan'taffordtotravelormanyare simplylosingtheirjobs/marriages/mental health/physicalindependence/livesduetonooptions availabletothem.Isthiswhataqualityphysiciandoes tothepatientshe/shehasamoral/ethical/Hippocratic obligationtocarefor?Ourgroupisgrowingbyleaps andboundsasLymeDiseaseisspreadingintoevery neighborhood.Thisissueisobviouslynotgoingwayand yes,wegetbetterwhenwefollowtheILADSprotocol !!!!!!!!ItistimefortheIDSAtogetinthegameandbea partofthesolutionandnottheproblem! MaryJaneSchroederPlasma...ohyes,peoplemustbe carefulwhenacceptingblooddonationsbecause babesia,Lymeandpossiblybartonellacanbepassed throughthebloodbankstothousandsandthousandsof people.IcangiveapersonchronicpersistentLyme!The IDSAshouldreallylookintochronic/peristnatLyme.So fartheyhaveblockedanyprogressofalertingthepublic tothesediseasesandhaveevencausedthedeathofa lotofpeoplebyignoringgoodoldscienceregarding this! MaryJaneSchroederYes,pleasebepartofthesolution insteadofbeingtheproblem!Thepainandagonyof thousandsofLymeandcoinfectionpatientsisonthe backoftheIDSA!Reviseyourguidelinesandallow peopletobetreatedproperlysothatadultsandworst ofall,ourpoorchildrendonothavetoliveinpainand loseportionsoftheirlife!

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TammiDawsonWe/Lymepatientshaveraisedsomany MichelleMillerAndersonIwouldlikeyoutotake ChronicLymeseriously! concernsthattheIDSAguidelinesdonotaddressthe needsofindividualswithLyme.WhatIwouldliketo DeborahPerryCywinkIwouldliketoseechangesin knowis,whyistheIDSAignoringusandnottakingthe howLymeDeseaseistreatedinCanada.It'satragedyit properprocedures,makingitharderfornecessaryfor isnottreatedasaninfectiousdeseasethatcanbefatal. changestotakeplace?Whathappentoourrightsand choiceofhealthcare?Thisisnotscience,itisfraud! Bottomlinepleasehearourvoices....Weneedyour MichelleMurphyIDSAmembers:Willyouevenread helpandrecognition!EnoughisEnough!Wehavea these? righttobehealthyandhappyindividuals! MaryAnnGriffinPleaselistentopeoplewhoaresick KathyRottierYouguysaresoWAYbehindthetimes withaninfectiousdiseaseandtrytofigureitout.Stop withLymeDisease.IhadaCDCpositiveresultfrom spendingtime&moneywritingguidelinessoyoucan IgenexwithalmostALLbands avoidgettingclosetothesick people(youmightcatchit!) SandySidah YouneedtoreviewtheLyme inthe3'sand4's,andyour guidelines.Youknowitandeveryoneelse IDSAdoctoldmethatIdidn't haveLymedisease,thatIwas ChrisLesingerEmsleyIwould doesiftheyhavebeentouchedbyLyme. depressed.Doyouknow liketoseethemacknowledge My life has been devastated because the ChronicLymeDiseaseand whatthatdoestothepysche revisetreatmentguidelines ofaveryphysicallysick physicianswhoItrustedcan'torwon't toreflectscienceandinput diagnoseLymeorevenexplorewhetherit person!!!!! fromtheInstituteof couldbe.Nowafteralltheseyearsof MedicineWorshop.Ihavea PennyLillisRealhelpfrom seizuresandotherneurologicaland doctorsacrosstheUSandfor dearfriendwhohassuffered theIDSAtoacknowledgethe fromthisterriblediseasefor physicalsymptomsthataredefinitely years.Thedifficultiesin Lymerelated,Ifinallygetadiagnosis.Isit coinfectionsofLymeand propertreatmentforLyme gettingtreatmenthaveonly in time to save me? I wonder. This could patients.Wearesuffering madeaterribleafflictionthat muchmorechallengingon havebeenprevented.Dophysicianscare? outherewithoutproper medicalhelp!Pleasehelp! herandherfamily. DoesIDSAcareforthesufferingLyme patientshave? BillKlavonskiI'veseensome FredericksResearchon commentsonLymeboards wheretheBborganismhides thatthisisgoingviral.Ifit inchronicLymediseaseand doesn'tgofurtherthanthisitwon't.Pleaseconsider thesymptomsitcauses. gettingtheattentionofasmanynewssourcesasyou can.I'vesentthelinkandinfototheDrudgereport. BrettEmsleyDearIDSA,Tohaveacknowledgementof chronicLymeandtohaverevised,realistictreatment Let'skeepthismoving.ThishastogetoutsideofFBand intomainstreammedia.Whatcanyoudotohelp? guidelineswhichreflectallknown/relevantinformation aboutLymeandassociatedtickbornediseaseswould JeanineCoxIhavea12yearoldboywhohaslostayear befantastic.Thiswouldeliminatesufferingbeyond ofhislife(sofar)fightingthisdebilitatingdiseaseafter whatcanbeimagined. multiplemisdiagnosisandanegativeElisa.Ialsohavea 14yearoldgirlwhowouldhavehadtoacceptchronic MariangelaComelatoRemetzplease,please,please, headaches,andmoresubtlesymptomsifitwasn'tfor revisittheLymeDisease.guidelines!Mydaughter herbrother'sdiagnosiswhichledtoherCDCpositive missedall4yearsofHSduetothisandsomeotherco testresult. infections.Shewillprobablyneverbebackto100%. Lookintoyourheartsandremembertheoathyoutook JeanineCoxHowlongareyougoingtoletpeoplesuffer whenyoubecamemedicaldoctors."First,donoharm" likethis? CathySingSosadforusthatwegetlookedatcross eyedbyDoctorswhenwementionLyme,Ihavebeento

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somanyspecialists,thelastonewastheIDDoctorin LewesDEthatactuallysaid"thereisnosuchthingas chronicLyme"IwasveryconfusedandfeelingmaybeI amturningintoacrazyhypochondriac.After consideringthatmysymptomsarerealandhavebeen formanyyears,Ihopedthathischildrennevergetthis dibilitatingdiseasetohavehiseyesopenedtothe sufferingitcauses. MariangelaComelatoRemetzToomanyofushave beenharmedfortoolong.Pleasehelpputanendtoit! YOUCANDOIT!Youhavearesponsibilitytoallyour patientsandcollegues.Wearenotgoingaway! DeniseWeaverGoodMorning...willyoubesharingthe outcomeofthisdatacollected?Thankyou. SusanSwinsonWilliamsMyJanuary5th1:32pmpost wasdeleted,anditwasn'tevenoffensiveorrude,lol. DidIhitanerve,IDSA??AllIsaidwasbasicallyStop makingLymeDiseaseaboutpoliticsandstart supportingthepatientsandtheirdoctors...allowthe sufferingpatientsandtheirdoctorsdecideontheir treatmentoptions,ratherthanbureaucratswhodon't havethepatient'sbestinterestsatheart.Areyou listeningyet?Orwillyoucontinuetoignorethealmost 2,000peoplewhohavepostedhereandthethousands morearoundtheworldwhoaresufferingbecauseof youractions?Deletingourcommentswon'tmakeus stoporgoaway,butmerelyprovestoshowwhat cowardsyouare. AngelaLWestbrookI'veendured10longyearsof SUFFERINGDUETOYOUR'GUIDELINES!'I'vebeen misdiagnosedforyearsduetodoctors/clinicsthatare ignoranttothetruefactsaboutLyme/cotickinfections becauseofyourincorrectguidelines.I'vebeen misdiagnosedforyearsduetoinadequatetesting becauseofyourguidelines!I'vebeenturnedaway, REFUSEDtobeseen/treated,bymany(includingour statesUniversityHospital!)afterfinallyfindinga diagnosisofLymebecausetheyarefearful(oflawsuits frominsuranceco's)orunable(theirhandsaretied becauseofthesystemtheyworkin)totreatdueto your'guidelines.'EventhoughIhavegoodhealth insurance,I'mleftwithhugebillsthatmyinsurance refusesnowtopaybecauseofyourguidelines.I'mnow leftunabletowork,andunabletobethewife,mother, friend&womantheLordcreatedmetobebecauseof yourguidelines!Itsaddensmetothinkhowdifferent mylifewouldbehadIbeenproperlydiagnosed&thus properly(NOT3weeks!)treatedrightaway.Peopleare

suffering,dying,goingbroke,watchingtheirlives wasted,leftcrippledand/orbedriddenbecauseofyour guidelines!Wakeup!Openyoureyes!Putevidence beforemoney&politics!Helpus!CHANGEYOUR GUIDELINESREGARDINGLYME&TICKBORNE INFECTIONS! HelenSamsonMullenPleasecouldyouacknowledge chronicLymeandproviderevised,realistictreatment guidelineswhichreflectallknown/relevantinformation aboutLymeandassociatedtickbornediseases. PeterKempDearIDSA.Pleaselookatmyexperiment forculturingspirochetesfrompeoplewithlongterm illness: http://www.counsellingme.com/microscopy/bskculture .html WouldIDSAmembersorgroupsplease 1.reproducetheexperimentand 2.investigatewhatthesemicroscopicspiralagentsare, 3.findoutwhytheytakemonthstogrowand 4.explainwhyantibiotictreatment(asperIDSA guidelines)doesnoteradicatethem? ManyThanksforyourconsideration JeffChristnagelWhydosomanyGULFWARera veteranswithillnessesdefinedbyGulfWarIllnessalso sufferwithLyme? LeslieMcBainOurbloodisonyouhandsifyoudon't makethisright! LynnCrosbyYouneedtolistentoILADSandpatients withchronicLyme.Theydo LynnCrosbyknowwhattheyaretalkingabout. SuzannePelletierHomeopathictreatmentsforLYME publicizedinadditiontoantibiotics(Japaneese Knotweed,Lymenosodes,Vit.Cpower&seasalt, HerbalistLymeTincture,etc.)andtheneedto supplementDandB12. PaulaGalloI'dliketoknowwhatPresidentBushwas giventocurehisLymedisease. SusanFigurskiPleasesavethewalkingdead CarlosDiazacureforchronicLymedisease

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GretchenAhlersPeterKemp,Thankyouforembodying passionfortruth!Youredefineforuswhatscienceand medicineis!!! SandySidahYouneedtoreviewtheLymeguidelines. Youknowitandeveryoneelsedoesiftheyhavebeen touchedbyLyme.Mylifehasbeendevastatedbecause thephysicianswhoItrustedcan'torwon'tdiagnose Lymeorevenexplorewhetheritcouldbe.Nowafterall theseyearsofseizuresandotherneurologicaland physicalsymptomsthataredefinitelyLymerelated,I finallygetadiagnosis.Isitintimetosaveme?Iwonder. Thiscouldhavebeenprevented.Dophysicianscare? DoesIDSAcareforthesufferingLymepatientshave? RobTannerHowaboutyouhaveyourLymedisease guidelinescommitteetravelaroundthecountryvisiting variousLLMDpracticesandexposingthemselvesto actualpatientsactuallybeingcrushedbythisactual disease.Ialsosuggestyouconductalargescalestudy usingthenew(andveryexpensive)culturetestona sampleofthepatientsyouwillmeetatthesepractices whocouldnotevenseetheinsideofamainstream hospitalIDDeptduetotheconsequencesofyourso calledguidelines. Next,sacktheguidelinescommittee(sinceyouwillnow haveevidenceoftheirnegligence)andreplacethem withamixofgenuineresearchersandLLMDs. FinallychangeyournametoIDSA(undernew managementnowtreatingdiseasesactuallycaughtin NorthAmericaratherthanjustforeignones). Iknowthat'snotassnappybuttheoriginalwaskindof innatelyironic. RobTannerWhenIcaughtschistosomiasis(swamin Nile,bitdumb)Isawabout8doctorsbeforeIfoundone whodiagnosedme.HewasanIDdoctorwhowassuper psychedtoseeschistoasIguesshedidn'tseemuchof itinChicago. WhenIcaughtLymedisease(walkinginaforestin Michigan,notsodumb)itagaintookabout8doctorsto getdiagnosed.ThedifferencewasthistimemylocalID Dept(UWMadisonhospital)wouldn'tevenseeme.My excellentMDspent40minutesonthephonewiththe IDdoctorwhomadethedecisionnottohonorher referral.Attheendoftheconversationsheaskedhim "areanyofyourcolleaguesmoresympathetic?"to whichhereplied"no".

FYI,theLymesymptomsareanorderofmagnitude moredisablingthantheschistosomiasissymptoms were,yetyouwereexcitedtotreatthat.IguessIshould apologiesthatmyboringhomegrowndiseaseisso uninterestingtoyou? DeniseObrien10yearsbecauseofyourguidelines. MassachusettsdoeshavechronicLyme.Iamliving proof.IwasonceasuccessfulbusinesswomannowI amadisabledsinglemothertryingtoraiseadaughter withdownsyndrome.Inthepast10yearsmy symptomshaveprogressivelygottenworse.Lymehas takenovermybody.Ithasinfectedallofmyjoints,my nerves,hasaffectedmyheart,mykidneysandevenmy brain.Iamoneoftheluckyoneswhonowhavedrsthat dobelievethatIhavechronicLyme.Itisbecauseof yourguidelinesIcannotgetpropertreatment. Financiallyitisimpossibleformetoaffordtotreat myself.Thecostrangesbetween$1200$4000/month formedication,supplements,labs,anddrfollowups. NowwithpropertreatmentIcanbepossiblycuredbut mostcertainlyimprovealotmore.Asasinglemotherif isdisableddaughterwhoCANNOTbecuredIamallshe has.Ibegyoutorevisityourguidelines.Mydaughter needsmeandLymeiskillingme.Donotignoreus.Our livesareinyourhandsandfamiliesaresuffering.Thank youfortakingthetimetoreadthis.Pleasetakethe timetomakethechangestofixthis. GretchenAlhers"Iwouldntexpectanyproblematall forthepresident,saidGaryWormser,chiefof InfectiousDiseasesatNewYorkMedicalCollegeandan expertonLymedisease.Hewontbeimpactedbythis infectioninthefuture. www.washingtonpost.com/wpdyn/content/article/200 7/08/08/AR2007080802268.html GretchenAhlersRegardlessofpoliticalorientation, coulditbethatpooradvisingregardingLymediseaseis affectingAmericandiplomacy? http://www.pensitoreview.com/2007/08/08/bushs doctorskeptLymediseasesecretforayearisthe conditionwhyhismindisdegenerating/ JeannieBonetpelsThankyouPeterKemp.Fascinating. IDSAneedstocheckoutthatlink!Seriously!!! DedeeSimmsMillageColoradodoeshavechronic Lyme.Areyouafraidofwhatwillhappentothe insurancecompaniesifyouchangetheguidelinesand starttotreatChronicLyme?Igetthatyoucouldbe afraidofanothereconomiccrisis,butbelieveme,allthe

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moneythat,inmycase,hasbeenspentonMRI's,Cat scans,ERvisits,ultrasounds,mindnumbing medications,dozensofdifferentspecialists,etc...is WAYmorethanitwouldhavecosttoputmeonlong termantibiotics.Justsayin' SamMaloneGretchen,inthatarticle(2007)they mentionSTARIwhichtheyclaimisn'tLymedisease, althoughitlooksjustlikeit,butitdoesn'tshowupin serologicaltests.Ithassincebeenfoundthatthere'sa previouslyundiscoveredborreliaspeciesBorrelia lonestari,whichistheinfectingagentbehindSTARIand isindeedLymedisease.Howmanymorespeciesare therethathaven'tbeendiscoveredyetanddon'tshow upintests?! http://www.ncbi.nlm.nih.gov/pmc/articles/PMC356874 / BoreliozaWewantthetruthaboutLymedisease!!! http://www.miklossy.ch/ EricAndersonEventhefoundingmembersoftheIDSA arecomingaround. http://www.Lymediseaseresource.com/wordpress/chro nicLymediseasevalidatedbyfoundingmemberof idsa/ SaraConnor http://www.youtube.com/watch?v=t247gCqBrTU&sns= fb JodyZukJulianTheLymeEpidemicasismorethan apparentfromtheseresponsesiswreckingpeople's lives.Ifit'saboutthemoney,considerthatyou'llsave moneyifeveryonefollowedthelatestLymedisease protocolsandthrewouttheold'gonein21dayswith doxy'inthegarbagewhereitbelongs.Giveusbackour lives. SaraConnor http://www.youtube.com/watch?v=LK2a3PrAXeY&feat ure=player_profilepage JodyZukJulianAndwillyougetridofthepatenton LymeDisease??Thatwouldbehelpful.It'snota corporation.OCCUPYLYME! JohnCoughlin http://johnnylight.proboards.com/index.cgi?board=me dicalinfo&action=display&thread=251 WelcomeSmallticksstillmakeyousick

johnnylight.proboards.com PeggyBoyceFureyreviseyourguidelinesand stopopposinglegislationdesignedtohelpeducatethe publicandhelppatientsgettreatmentforLyme disease. KeriEllingtonAragonIdon'tseethesharebuttonfor thispostanymore.Anyoneelsenoticethat? PeggyBoyceFureyStoppersecutingdoctorswhotreat patientsoutsideyourguidelinesordisagreewithyour guidelines LaurieDamsellFaheyIwouldbehappytoshowthe IDSAdocumentedpicturesofactiveongoinginfections inmybody. EliseBradyStopbeingcontrolledbythebig corporations,gobacktoscienceanddowhatyour organizationwasdesignedtodo!Lymediseaseiskilling peopleandbabiesandyourorganizationhasa responsibilitytoreportalloftheevidence! BrianCrosbyDearIDSA,pleaseacknowledgechronic Lymeandreviseyourguidelinessotheyarerealistic, balanced,andreflecttheILADSguidelines.Tonotdoso, wouldcauseevenmoresufferingandpainthenyou alreadyhave. MaryBushKeriEllingtonAragonthesharebuttonis there,takeanotherlook.bestwishes. PumaOfThenorthWhatIwouldliketoseefromthe IDSAthisyearregardingLymediseaseguidelines~Truth honesty&integritywouldberefreshing&anice surprise. IreneStewartAfairandunbiasedlookatALLthe researchonLymeanditscoinfections KarenSchlangenSteeleGetridofthecorporate interestsandtheconflictsofinterest.Whenthoseare gone,thetruthofsciencewillscreamoutloud!Somany peoplearesickandyouarespreadinginaccurate informationand"guiding"doctorstonottreatLyme aggressively.Itreallygets"undermyskin!" CathiGallucciRuizIjustwanttogetbacktothelifeI hadandlovedbefore.Whyisitsohardtojusttoahave anormalday?

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theIDSAallowsthemtouseitsnameandreputationto MichaelFeinbergIwouldliketoseetheIDSAtakea givevaliditytothiscriminalactofdeliberatemedical realisticlookatLymeDiseasediagnosisandtreatment, malpracticeleavesmewonderingwhatthefutureof avoidinganyoutsideinfluences,invitingthosedeemed themedicalcommunitymaybe.WhenIlookatthefact "LymeLiterate"tothediscussiontableandrevamping theinadequateguidelines thattheCDCitselfadmits thatcurrentlyexist. thatit'ssurvalencecriteria WendyVogt Uncheckedepidemicthat onlydocuments10%ofthe has disabled previously employed SusanShieldsWhatwould actualLymecasesannually people...whenitstartsaffectingour weliketosee???Well,first andthatthesecurrentIDSA we'dour"infectiousDisease guidelines onLymeclaimthat economy,itgetstheattentionof Society"torecognizeand legislatureandtheyareaskingwhyithas theCDCsurvalencecriteria admitthatLymedisease, leadstoexcessivelyhighfalse gottentothispoint.Allfingerswillbe alongwiththeothervector positivediagnosesitbecomes pointed at you. I wouldn't want to be in coinfections,isagraveand clearthatthemorbidityand dibilitatingdisease.Onethat yourshoesthisyear.Goodluckwiththat. mortalitydirectlyresulting hastheabilitytotakelives, fromtheseguidlelinesistruly literally!Insteadoffeeling massive.Whenonelooksat _________________________________ liketheymustbepartofa thespreadofthisdiseaseAS Kelly Mairson Your response "secret"society,allowLyme ITISDOCUMENTEDandthen patientstheprivilegeofbeing "Providingguidanceforgoodpatientcare allowsfortherateof abletodiscussthisdisease undocumentedcases,it has always been and will continue to be a openlywiththeirdoctors becomesclearthatLymeis insteadofbeinglookedatlike cornerstoneofoursociety'smission" rapidlybecomingan theyarecrazy!!It'sbad undiagnosed,untreated enoughtobesoseverelyill, epidemic.Icanonlyhopeand Thinkyoushouldthinkaboutchanging praythatinvestigationsinto butit'sawholeothereventin your"mission." thispaneldoesnotshowthat lifetobemadetofeelthe theattempttodefineaway diseaseisn'trealandthe Lymediseasecamefroma symptomsareallintheir Iseriouslydon'tthink2,000patients desireonthepartofthe heads!! wouldbecomplainingifthatwasthe medicalcommunityto case. continuetoprofitfromthe GeorgeRStalloneThe currentIDSAGuidelinesfor unendingsymptomatic theDiagnosisandTreatment treatmentofcountless ofLymeanditsassociatedCoinfectionscanbestbe "syndromes"thathavenocurewhilerecognizingthat theappropriatediagnosisandtreatmentofLyme describedasaCrimeAgainstHumanity.Attemptingto diseasewillleadtoarelativerapidandinexpensive useonescredentialsasaphysiciantodefineawaya eradicationofthese"syndromes." diseasecausingthismuchmorbidityandmortalityfor personalfinancialgainispurelycriminal.Receivingthe backingofaprestigiousprofessionalcollaborationsuch SusanShieldsAnothercommentImustmakeisthatI astheIDSAforthiscrimeunderminesthereputationof thinkIcanactuallyunderstandhowalltheAIDSpatients theentiremedicalcommunity.SuchindividualsasDrs feltbackinthelate70'sandearly80's.Lookhowlongit Wormser,Shapiro,Dattwyler,Steereandtherestofthe tookdoctorstoacceptthatAIDSwasaforcetobedealt LymepanelshouldbecensuredbytheIDSAinorderto with!OnequestionI'dliketoaskour"infectiousDisease protecttheprofessionalreputationsofallit'sother Society",itLymediseasecanbe"curedin710days membersastheyaresuretobethesubjectsof withoneroundofantibiotics,thenwhywon'tInsurance countlessindividualandclassactionliabilitylawsuites Companiesallowpeopleinfectedtogetlifeinsurance overthecomingyears.Ifinditpersonallyinsultingto policies???Iknowthistobeafactbecausemyniece thinkthatthesemenputonwhitelabcoatsandused whohasbeenbattlingthiswickeddiseaseforalmost2 theircredentialsasphysicianstolieaboutadiseaseina yearstriedtohaveherlifeinsurancepolicyamended, waythatdirectlycontributestothemorbidityand andherinsurancecompanywouldnotgrantany mortalityofthousandsofpeopleannually.Tothinkthat increasebecauseshequote"hadanincurablediease"?

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Somethingisterriblywrongtosaytheleast!!Doctors mustbecometrainedinhowtotreatthisplagueand mustallfinallyagreethatlongtermantibiotic treatmentisaMUSTisthereisanyhopeoflivinga normallife.Oh,andhowaboutfundingresearchtofind adefinitivetestthatwilldiagnosisLymeandtheyhow aboutacure????Whatdowewantfromyoupeople?? Thatisalmostaninsultingquestion,eventhoughI'm verygladyoufinallyaskedit!!! JeanHemondLymeDiseasedenialbyIDSAisabout intermingledpower,politicsandmoney;Notscience medicineandresearchasitispretended.Otherwise IDSAactionswouldbeaccordinglydirectedtobenefit thepatientsbyorientingresearchspreadingthefactual informationasexperiencedbyhundredofthousand patients.Andfinallyyouwouldhelpofficialmedicineto revisitmillionsoferroneousmedicaldiagnosticsfor desperateterminallyneurologicalsickpeoplescaused byIDSAofficialLymeDiseasedenialandignorance. CamAlteeBrownAskedinthe80swhythegay communityfounditnecessarytobesoloudand obnoxiousconcerningAIDStreatment,agayfriendsaid, "Becauseourlivesdependonitandwedon'thavetime toplaynice." CamAlteeBrownIagreewithwhatGeorgeR.Stallone saidabove.TheIDSAisdoingitsownreputationa disfavorbylettingWormser,etalspeakforthemwhen itcomestoLymeDisease.Physiciansthatcontinueto seeLymepatientswalkthroughtheirdoorsaretuning intothedisconnectbetweentheguidelinesandwhatis necessarytotreat.Andwhatdoestheestablishmentdo buthuntthemdown,threatentopulltheirlicenses. BarbaraCampbellYourresponsetotheseconcernsand postedcommentsisablatantlie.ThecurrentIDSA guidelinesarenotreflectingthemostrecentstudies andunfortunatelykeepingthosewhoneedtreatment inthedark.Theirphysiciansareafraidoftreating chronicpatientsproperlyforfearofgettingonthe "witchhunt"list.Insurancecompanieshavetomanup andbegincoveringthelongtermtreatmentthatis necessarytotreatchronicallyillLymepatients. JulieRidlThepoorGPsinmyhometowninMichigan arestrugglingwithmoreandmorepatientswhoare wildlysickafternotbeingdiagnosedwithLymeintime, forlackofobviousrashes,lackofpositiveELISAtests, etc.Whentheselatedisseminatedcasesarefinally diagnosed,throughpositiveWesternBlot,thelocal

IDSAdocshavenointerestintheircases.LocalERdocs havelessunderstandingthantheGPsdo,blatantly insistingthatLymeisrareinourarea(despiterecent biologicalstudies),andhavinganancientpictureofthe diseasemanifestationsintheirminds.Isn'ttheIDSA supposedtobeabeaconofwisdom,educationand supportforpersonswithinfectiousdiseases? ParticularlyforemergingandspreadingdiseasesLyme. WiththeTimesreportingindicatorsthatthiswillbethe worstyearinrecordforLymedisease,itwouldbewise togetyouracttogetherNOW,beforeSpringbrings moresufferingandmorebrokenfamiliestothis country. ResponsefromtheInfectiousDiseasesSocietyof AmericaIDSAappreciatesallofthepassionate responses.Althoughwearentabletorespond personallytoeachcomment,wewanttoassureyou thatwetakenoteoftheinput.IDSAsmember physiciansareconcernedaboutthefullrangeof infectiousdiseases,includingHIV/AIDS,drugresistant infections,influenza,tuberculosisandmanyothers,in additiontoLymedisease.Providingguidancefor excellentpatientcareisourgoal,andrelyingonscience andmedicalevidenceisthebestandsafestwayto achievethat. JolRuhlmannPleaserecruitsomeLLMDsforthenext guidelines! KellyMairsonYourresponse "Providingguidanceforgoodpatientcarehasalways beenandwillcontinuetobeacornerstoneofour society'smission" Thinkyoushouldthinkaboutchangingyour"mission" Iseriouslydon'tthink2,000patientswouldbe complainingifthatwasthecase. JulieRidlAndso,weneedmuchmorescienceand medicalresearchfortickbornediseases. MichellePerryWhatkindofresponsewasthat??? JolRuhlmannTakenoteoftheinput...Great.And then,willyouchangeanything? WendyVogtUncheckedepidemicthathasdisabled previouslyemployedpeople...whenitstartsaffecting oureconomy,itgetstheattentionoflegislatureand theyareaskingwhyithasgottentothispoint.All

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LinHuhnCheckoutthesickpeopleandthedoctors fingerswillbepointedatyou.Iwouldn'twanttobein whotreatthem.Iamstunnedbyyouranswer.Ignorant yourshoesthisyear.Goodluckwiththat. doesn'tbegintocoveryouortheMDswho misdiagnosedandmistreatedmefor20years. VirginiaWuellnerWardIwouldliketoseerecognition ofchronicLymeDiseasebyIDSA.ManyofushaveCLD, GinnyCoonWalcottAcceptanceofthetruthand butcannotgetourIDdrs.torecognizethis,thus acknowledgementofChronicNeurologicalLyme meaningourinsurancewillnotpayfortreatment. Disease!!WEWON'TBESILENCED!Millionsofvictims PLEASEtakeseriouslyoursymptomsandrecognizethat havebeenforcedtoleavetheworkforceduetoits theyarechronicLyme. debilitatingsymptomsanddestructionitcauseswhen leftuntreatedorundertreated.CDCguidelinesMUST MarshaMarcinkoREALresearchandrealevidenceof berewritten...yesterday. thetruthaboutLymediseasereflectedinyourcurrent guidelines.....acknowledgethetruth.Andbytheway, LisaShogrySavageThe it'sokaytoadmititwhen ISDA'sresponseisexpected, yourwrong...Iamlivingproof ResponsefromInfectiousDiseases butstillgreatlydisappointing. thatyoucanhaveLyme Society of America IDSA appreciates all Ironically,ImustflytotheDC diseaseandneverseeatick, ofthepassionateresponses.Althoughwe areatoreeceivetreatment orpresentarash(andyesI testedpositiveforit).Iam arentabletorespondpersonallytoeach formyLymedisease,sinceit livingproofthatittookmore comment,wewanttoassureyouthatwe "doesn'texistinSouth Carolina."DidtheIDSAplace than48weeksofantibiotics take note of the input. IDSAs member theGPSontickssothey togetridofit...ittook11 physiciansareconcernedaboutthefull knownottocrossintoother months,andawholelotof states? Seriously,ifthisissue pain,patience,and rangeofinfectiousdiseases,including wasn'tsopainfulfinancially, perseverence...afterbeing HIV/AIDS,drugresistantinfections, physically,andemotionally,it deniedadiagnosisortesting influenza,tuberculosisandmanyothers, wouldbelaughable.Iam for5+yearsduetoyour thankfulthatIhavethe misguidedguidelines...Do inadditiontoLymedisease.Providing resourcestocompletemy what'sright. guidanceforexcellentpatientcareisour treatment.ItisaTRAVESTY! goal, and relying on science and medical AshleyOrdeckiThatisallwe evidenceisthebestandsafestwayto GretchenGrannerMaronde want!Foryourguidelinesto AnhonestreviewoftheLyme relyingongoodscienceand achievethat. DiseaseGuidelineslookingat medicalevidenceinsteadof thesciencepresentedatthe money.Ifitwasthenyou IOM(InstituteofMedicineCommittee)workshopand wouldnthavealmost2,000responsesofalmostall lymeconcerns. acknowledgingthatallisnotknownaboutthis emergingcomplexdiseasewithitsmanycoinfections. ChristianHornung@IDSA:Thanksforyouranswer.But Imverysorrytosay,thattheIDSAguidelineisntthe GinnyCoonWalcottYes,itisatravesty,Lisa.Iwas bestadviceforpatientswithLymedisease.This deniedIVantibioticsbyinsurancecompany.My guidelineisformanypeoplethebeginningoftheir stomach,gallbladder,bladder,kidneys,andlivercannot chronicLymedisease.Thestudies,whicharebuilding handletheoralantibiotics,whichItookfor1year.My thebasicsfortheguideline,arentuptodate.These appendixwassoinfectedwithLymebacteriathatthey studiesareconfuted.TheguidelineofILADSarethe weresurprisedIsurvived.AndsoItrytogetthrough bestofferforpatientswithLymedisease!!!Wakeup!! eachdaywithaslittlepainaspossible,prayingforan Adaptyourguidelinebehumanhelpthepeople! answertothisnightmare.Godbewithallofus. Yourpointofviewisunjustifiable! MonicaHumblesMoreworkintheconnectionbetween ICandLymediseaseandit'sconnections KimberleyFosterhealthypeopledontbringinthe buckssothereisnoresearchthatwillevermakethisso.

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MichelleL.SaxonDearsirs,frankly,itstoolatefor whati'dliketoseefromtheIDSAinthiscomingyear becausewhatI'dliketoseeismymotheragain.She passedawayinAugustfromchronicundetectedforat least20years,untreatedintimeLymeDiseasewith secondaryScleroderma.Youallneedtolisten.Youall needtogetagrip.Openyoureyes,helpthesepeople cryingouttoyouagain,it'stoolateformy67year youngmother,butitisnottoolateforsomeofthese peoplewhoaresoveryill.You'llbeheldaccountablein frontofyourmakerwhenyourtimeisup. MichelleGreeneIDSAsmemberphysiciansare concernedaboutthefullrangeofinfectiousdiseases, includingHIV/AIDS,drugresistantinfections,influenza, tuberculosisandmanyothers,inadditiontoLyme disease."WhatahootthisstatementisbyIDSA.Idon't knowabouttherestofyoubuthowmuchpublic informationonLymediseaseisavailablevsthe information(andmedicalresources)availablefor HIV/AIDS,influenza(wow,whatadebilitatingdisease), tuberculosis,etc.Inaddition,whenwasthelasttimea physicianhadtofearlosinghis/hermedicallicensefor treatingapatientwithaninfectiousdisease,otherthan Lyme? StephanieVandagriffAtleastIDSAfinallyresponded, butthatwasthecrappiestresponseI'veeverseen.Just becauseyoureleaseastatementclaimingthings, doesn'tmakeittrue.Hereisafullresponsetheymade onus,reallydisheartening. StephanieVandagriff www.Lymedisease.org/news/touchedbyLyme/idsarespo nse.html KennethPoindexterIDSA,.Idon'tknowifyou've noticedthatthereisbarelyahandfulofresponseshere regardinganythingotherthanchronicLymedisease.It isclearthatthereisahugedisconnectordenialonthe IDSAspartregardingLymevsotherdiseases.Thereisa hugeoutcryforhelp.WhywouldtheIDSAevenaskfor whatwewantandthenturnaroundandrespondin sucha"let'smakelikeLymeisn'tasimportantasevery otherdisease'response.Puttheresourcesintofixing thewrongssurroundingtheLymetreatmentguidelines. Quitpretendinglikeitdoesn'texistorisn'tashugeof anissueasitis.That'sallweask. ChristineKellerIamdisgustedandfuriouswiththe IDSAresponseorlackthereoftheusualtreatment.In theIDSAtoHitleryouARERESPONSIBLEFORTHE

DEATHSANDDESTRUCTIONOFTHOUSANDSOFLIVES. Plainandsimple.Itisclearyoudonoandwillnot conductyourselvesethically.Ipersonallywillseetoit thatonanationallevelyouALLwillANSWERforthe livesyouhaveandcontinuetotake.Thisisnottheend, butthebeginningofyourend.Lymepatients,Ineed eachofyoutowriteyourlocalCDC,AG,Senators,Reps, Legislators,andmediacollectively.Thisisofficiallya movementnedtonationwidetobaccoclassactionsuits, and"occupyAmerica".Ican'tdothiswithouteachof youemailingyourstoriesanddocumentationtothe abovementionedcontacts.Now,today,OURVOICES ANDSUPRESSEDSCIENTIFICEVIDENCEWILLBEHEARD! TinaCyrLivingstonIwouldliketheIDSAtohearour voices.IhavebeentoldmanytimesthatIdonothave LymediseasebecauseofnegativeELISAtests.Ihave hadbullseyerashessince2006.Nooneknowswhat theyare,whytheyarethereandtheydonotgoaway.I havebeentoldthatIamtiredbecauseIhavefour children;Iamdepressed,etc.,etc.Bytheway,Iwas given3weeksdoxyeachtimearashshowedup,butI guessthatreallydoesn'twork.ThenwhenIhada positiveWBlastsummerIwastoldbyIDdoctorthatit wasafalsepositive,therashwasanallergy.Afterhe didallergytesting(anditturnedupnegative).Iwastold "youhaveamysteriousillness.Idon'tknowwhatitis. Youshouldgotodermatologyandgetsomesteroids thatoughtoftakecareofit"(alreadyhadabiopsydone innothing)IthoughtIDdoctorsweresupposeto investigatethesemysteriousillnesses.Especiallyinthe stateofMAwherewearesupposetobedoinglotsof research.Andinhisarrogance,hetotallydidn'thearmy arthritic,neurologicalandpainsymptoms.Imusthave beenmakingthemup.IgaveuponIDandheadedfor anLLMD.Lowandbeholdshewasabletodiagnose overthephone.TherashwasfromBartonella.After moretestingitwasconfirmedBartonellaandLyme. After3weeksofantibioticsLowandbeholdIstarted gettingpigmentinmyskinwhereIhadvitiligo.Now unfortunately,Ifirstcamedownwithvitiligoduringmy firstpregnancy.Guesswhat?Ihavetwokidswith autismandonewithADHD.Coincidence????THINK NOT! Myentirefamilyisinfectedandnobodyeverlistened. Thepediatricianswon'tevenreturnmyphonecalls.I thankGODformyLLMDeveryday.Ifitwasn'tforherI amsurethatIwouldbedeadbynowandmyyoung childrenwouldhavebeennext.Shameonyouforthe secrets.Thisiscostinguslotsofmoneyoutofour pockets,becausetheinsurancecompanieswon'tpay

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UntilyouexperiencethisdiseaseIdon'tthinkyoucan forIVtreatmentandtheprobioticswehavetotake appreciatethecomplexity&howdisablingitcanbe. withoralsarecostingfamiliesafortune!Youneedto Pleaseopenyourminds&moreimportantlyopenyour educateyourcolleagues.Massachusettsisinfestedwith hearts! ticks.Atleast5ofmyneighborshavebeenillandlotsof myfriends.Pleasetreattickbornediseaseuntiltheyare KaetheMitchellMychildren'spoorpediatrician dead,notamediocre3weeks.Everyoneisanindividual andeachrespondsdifferently.Yourguidelinesare followedtheIDSA'sguidelinesandorderedthefaulty outdatedandarenotallowingmanycaringdoctorsto ELISAformykidswhentheypresentedwithLyme treatthewaytheyshould. symptoms.Thetestwasnegative,sotheywentonto becomemoreandmoredebilitatedastimewenton.It's PaulLattucaDearISDA,Pleasemake2012theyearwe notthepediatrician'sfaulttheguidelinesareoutdated, solvethepuzzleofLymeDiseaseandthecoinfections iftheyevenWEREindateatanytimeinthepast.Now sheseesmykids,whomshehascaredforsincethey thatgoalongwithit.Weneedbettertesting,more werebabies,sufferingwithlatestageLymeandco effectivetreatments,andinformeddoctorswhoare infections.IwishIcouldpostherewhat"HEDouble willingandcapableofdealingwithtickborndiseases.A Toothpicks"mykidshavegonethroughtheselasttwo fewsuggestionsmightincludefundingresearchinto daysintermsofsuffering,butIwillprotecttheirprivacy bettermethodsofculturingLymeandBartonellasothat anddignity.Sufficeittosay,IDSA,nooneshouldsuffer wecandirectlyidentifywhatismakingpatientssickor liketheyhave,especiallyasadirectresultofnegligence forminganationalLymeDiseaseForumwhere byamedicalsocietythatshouldbeprotectingits researchers,doctors,andpatientscanshare citizensfrominfectious informationopenly.Bestof Scott Reed Under your Lyme Disease diseases,butisinstead lucktoyouin2012...Alotof Guidelinesmanypatientshavebeen preventingthemfromgetting peoplearecountingonthe adiagnosisandeffective ISDAtoleadthewayinthe harassed,belittled,falselyaccusedof treatment. battleagainstLyme! psychosomaticdisordersandbroadly misdiagnosedingeneral. BambiAlbertSoyoursaying DonnaZukaitisFalcone 1,975CHRONICALLYILL IDSA...pathetic. People withLymediseaseis Underyour2006LymeDiseaseGuidelines NOTenoughmedical DebWilsonPlease,letgoof manypatientshavebeendenied evidence????? youregos,openyourhearts coverageofmedicallynecessary &listentothepatientswho havefollowedILAD's BethPattzWearenotgoing treatmentfromtheirinsurance guidelines&regainedtheir away!!!! Ever:) companies. health.Lymeisacomplicated illness.AfteratickbiteI ScottReedIDSA,thankyou Underyour2006LymeDiseaseGuidelines foryourresponseand followedyourtxguidelines onlytobecomeveryill.When manypatientscontinuetogetsicker. recognizingthepassion testingpositivemonthslaterI behindthepostsasthis begantoinvestigateallthe conditionhastraumatically Underyour2006LymeDiseaseGuidelines touchedthelivesofsomany. differentpointsofview. manypatientshavelosttheirlivelihood, WOW!Whatisallthisabout? Ireallydobelievethatthe Thepatientsareclearlythe majority ofyourmember houses,familiesandsufferedgreat oneswhoaresufferingasa physiciansdocareaboutthe economictragedies. resultoftheseconflicting qualityofhealthcarethey views.I'mnotafanoflong provide.Allinfectious termantibiotics,butafter Underyour2006LymeDiseaseGuidelines diseasesareequally speakingwithoveradozen importanttothepatients manypatientshavedied. peoplewholiveinmy whoselivesaretouchedby communitythatwasthe them. recommendedtreatmentthatseemedtogetresults.Do youhaveanyoneontheboardwhohaschronicLyme?

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Providingguidanceforexcellenthealthcareshouldbe prioritynumberonewithalargeinfluentialorganization liketheIDSA.Manydoctorsaroundtheglobehave takenyourguidancetoheartandhaveusedthat guidancetotreattheirpatients,andwiththecaseof Lymedisease,thatsabigproblem. UnderyourLymeDiseaseGuidelinesmanypatients havebeenharassed,belittled,falselyaccusedof psychosomaticdisordersandbroadlymisdiagnosedin general. Underyour2006LymeDiseaseGuidelinesmany patientshavebeendeniedcoverageofmedically necessarytreatmentfromtheirinsurancecompanies. Underyour2006LymeDiseaseGuidelinesmany patientscontinuetogetsicker. Underyour2006LymeDiseaseGuidelinesmany patientshavelosttheirlivelihood,houses,familiesand sufferedgreateconomictragedies. Underyour2006LymeDiseaseGuidelinesmany patientshavedied. ThisisNOTexcellentpatientcare,youhave momentouslyfailedyourgoalwhenitcomestoChronic LymeDisease.Please,againIbegboth,youasan organization,andyouasindividualmemberphysicians, torevokethepoorguidanceyouhaveprovidedwith yourcurrentLymeDiseaseGuidelines. IbelievetheIDSAcanmakeadifferenceinproviding topnotchcare,theyhavetheresourcesthatare needed.Scienceandmedicalevidencesupportthe ILADSguidelines.Scienceandmedicalevidence, includingthethousandsofpostsyouhavereceived haveshownyourguidelinesarewrong.Scienceand medicalresearchhaveshownitstimeforachangein policy.Dotherightthingandshowthemedical communitythatsometimesasfalliblehumanswedont alwaysgetitright. YOUcanachieveyourgoals,andWEcanhelp! Respectfully, ScottReed Fatherof19yearolddaughterbedriddenwithChronic LymeDisease. JoannaCliffordMagoonAfter5yearsoftreatmentfor Lymewithaverybrave,verywiseDoctor,sofarso good.makeiteasierfordoctorstothinkoutofthebox andtreataccordingtotheirwellhonedinstinctsand experiencenotbysomewatereddown,ineffective guidelines.IweepforthosethousandsofLyme

suffererswhoareinadequatelytreatedbecausethose whomakethetreatmentrulesdosowithoutinsight, opennessandcourage. CarlaBrownIttookTHREEYEARSformetobeatLyme Disease.Ihopeyoulookattheactualmedicalevidence andrewriteyourguidelinesinsteadofusingbiased evidencethatfitsyouragenda. HollisMcGuireIwastreatedin2003forLymedisease butdidnotgetbetter.Ittookme7yearstofindan LLMDwhileIgrewmoreilleachyear.Twoyearsin treatmentandIamnowwellagain.Thetraditionallevel oftreatmentworksforsome,maybeformost,butitis notadequateforall,andthosewhoremainillshould notberidiculedorturnedaway. BambiAlbertsowhyisitofallthethingsyouhave postedhere,LymeDiseasegotthemostresponse???? KennethPoindexterIDSAisclearlycensoring comments.Ihaveseen10commentsdeletedinthelast 20minutes. MelissaGriegelYourguidelinesarecompletely inaccurateandcausingpain,misery,financialloss, degradationofhealth,stress,andillnesstomillionsof people. RozWesolaskiMilanoIDSA.......pleasetake responsibilityfortherealityofChronicLyme,2000 commentscannotbewrong......whetherornotyoulook atthisrealistically,eventuallythetruthwillcomeout, justAIDS. MelissaGriegelWhatwouldIliketosee? researchaboutchronicLyme accurateguidelines unbiaseddoctorswritingyourguidelines aLymevaccine moreeducation,obligingmoreaccurateinformation, fordoctors anaccurateeducationalcampaignforeveryoneinthe US removaloftheridiculousnotionthat3weeksofdoxy usacureall betterLymetesting moreinfo,researchandtestingonalloftheco infections aCURE! anapologytoeveryLymepatientwhowasmistreated, notdiagnosed,orhumiliatedbydoctorswhoare

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membersoftheIDSAandfollowyourinaccurate guidelineslikeabible. MelissaGriegelIfanyoneofyourmembersactuallygot Lymedisease,theywouldnolongerdismissthe notionofChronicLymeand wouldunderstandhowdevastatingadiseasethisis,and realizethat3weeksofdoxyisnotenough. DaveBassettIwouldliketheIDSAtolookatthereal factsofLymedisease,includingtheresearchdonein Europe,ratherthanitsown"cookedfacts"promulgated bythesamegangoftenyalies,"peerreviewed"bythe samegangoftenyalies,andpublishedinthesamefive journals.It'snotworkingforyouanymore.Medicalcare providersalloverthecountry,andI'mnottalkingabout Lymespecialistsjustoridnaryprimarycareproviders, canseeyoursociety'sguidelinesaretotallydivorced fromclinicalreality.Youareanddeservetobea laughingstock. JillJustissIDSA,yousaid:"IDSAisanactive,member drivensocietyandassuch,thisquestionwasintended forthe9,000orsoIDSAmemberphysicians, researchersandhealthcareproviderswhoare concernedaboutthefullrangeofinfectiousdiseases includingdrugresistantinfections,influenza,hepatitis, HIV/AIDS,tuberculosisandotherlifethreatening diseases." Ifyoudonotwantanopinionfromthepatientswhoare directlyaffectedbyyourguidelinesthenIsuggestyou deleteyourfacebookpageandfindanotherwayto communicatewithyourmemberphysicians, researchersandhealthcareproviders.Ifindyour dismissalof2,000commentsfromchronicallyill patientsandignorancetotherealityofthisdisease disgusting. HeatherLynnPleaserefrainfromaskingvague questionsifyouaregoingtoignorethegenuine responsestryingtoadviseyouofwhereyoursociety fails.Yoursocietyhasfailedthepublic.That'sallthe responseyoudeserve. HazelRabyIwouldlikethesocietytoopentheireyesto whatisgoingonaroundthemconcerningLymeDisease. Deletingcommentsisinthesameveinasignoringthe voicesofsomanysickpeople.Yoursocietywillsuffer duetothiscallousnessandblatantignorance.By makingthisquestionpublicyouhaveshownyourhand inhowyoutreatothers.

KellyPattonNanneySameoldresponse.YearafterYear whilethismesswithTB[tickborne]Illnesscontinuesto ruinthelivesofsomany.Theparentsofthesesick childrenareonthemove.Mykidsaren'tgoingtogo throughallthissufferingfornothing.Thetruthwillwin. SharonHawkesIDSA,inyourreponseyousaid, "Providingguidanceforexcellentpatientcareisour goal,andrelyingonscienceandmedicalevidenceisthe bestandsafestwaytoachievethat."Evidencebased medicinewasdefinedbyDr.DavidSackettasconsisting ofresearchevidence+clinicalexperience+patient preference.Iftheevidenceislacking(theIOM conferencesaiditis,andtheIDSAguidelinesreview committeesaiditis),thenclinicalexperienceand patientpreferenceshouldcarrymoreweight.Isthe IDSAreallypracticingevidencebasedmedicine,orisn't it? MelissaGriegelWhyareyouopposedtofindingoutthe truthregardingdiagnosisandtreatmentofLyme? JoyJustJoyI'dliketoseeALLoftheLymecrookswho areresponsibleforallofthishumansufferingBEHIND BARS!!!That'swhatIwouldliketoseein2012! LisaHiltonINyourresponseyoustatedthatyouwould havemoretogainbyprescribinglongtermabx.Why wouldthatbeifnoneofyourpanelistshaveany conflictsorinterestbyhavingtiestoinsurance, pharmaceuticalcompanies,stockinvaccines??Just curious. PaulaGalloThereisonewhoistheheadofinfectious diseasemedicineatNorwalkhospital.Areyoukicking backvacationstothesedocs?howmuchareyoupaying themtolieforyou? HollyDuValIwouldliketoseemoredoctorsgeton boardwithrecognizingthesignsandsymptomsofLyme disease,especiallychronicLyme.Ihavebeensuffering forseveralyearsnotbeingabletofigureoutwhatis wrongwithme.Inowhavebeenbeingtreatedbya Lymedoctorwhoiswonderfulforthepastyear.Iam stillverysick,havebeeninbedforoverayearnow,if ThiswascaughtearlierthenmaybeIwouldn'tbesosick now.Iamhavingivtreatmentsnow,Ihopethisisthe key.Thankyou MelissaGriegelWhatwouldIlike? threeyearsofmylifeback threeyearsofmykids'livesbackwithahealthymom

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allthemoneyIspentgettingmyselfbetterbecauseifI hadbeendiagnosedandtreatedmoreaccurately,I wouldhavegottenbettermuchfasterandmyinsurance wouldhavepaidforit SylviaReismanGloverDearIDSABoardMembers,as yourorganizationbasestheLymediseasetreatment guidelinesonscientificfacts,youhavejustrecruited 2,000+patients,whichyoucoulduseina"Clinical Study".Thisiswhatyouneed,inordertohaveevidence tomakethenecessaryimprovements/changestothe Lymetreatmentguidelines.Ihaveafeelingthatmost peoplepostingherewouldgladlysubmittheirlabs, patienthistoryandoutcomesasaresultofbeing treatedwithlongtermantibioticsvsshortterm treatment.Theresources(patientgroup)ishereatyour fingertips.Youonlyneedthestafftocontactthe patientsandcollectthedata/factstocompleteyour revisedstudy. SaraSchultzIwouldliketheIDSAtoprovidethepublic withdocumentedproofthatthepharmaceutical industrydoesnotprofitfromthediagnosisof"Post LymeSyndrome,"oranyoftheotherchronicillnesses latestage,disseminatedLymediseasecanmimic, includingMultipleSclerosis,Fibromyalgia,chronic fatiguesyndrome,Parkinson's,LouGehrig's, Altzheimer's,arthritis,anxiety,depression. TessaMccallIwouldliketoknowwhatIDSAhasdone withtheinformationprovidedduringtheIOM conferenceinOctober2011.Thisconferencewas requestedbyCongress.WhywouldCongressbe involvediftheythoughttherewasunanswered questions.Ibelievetherewasacknowledgementthat tickborneillnessesareseriousandhavebecomea majorprobleminoursociety.Howmanymorepeople needtoeffectedbythishorriblediseasebeforethe IDSAwilladmitthatnewstudiesneedtobedonewith anopenmind.Wearenottheonlycountrybeing effectedbytickbornedisease.FromwhatIhaveread somecountrieshavealreadyacknowledgedchronic Lymediseaseandareworkingfromthisstandpoint. Hopefully,IDSAwillacknowledgethistruthbefore anothercountryoutlineswhatIDSAhasknown.ITS REALITSHEREANDITSNOTGOINGAWAY.Come downoffthepedestalandconversewiththepeople fightingtheenemy(thebacteriaandparasites). JaisibelSullivanPleasepointustoclinicaltrialsshowing that28daysofantibioticshelpsthosewhoaresickfrom Lyme.

MindySchwartzDiepenbrockPleasemake2012the yearwesolvethepuzzleofLymeDisease.Ican'tbearto watchmy7yearoldstrugglewithchronicLymeany longer.Thesixweeksofantibioticsshewasgivenbarely scratchedthesurfaceofhersymptoms.Iamprayingfor IDSAtoreallylistenbecauseIdobelieveallmedical doctorstakeanoath...anoathtodonoharm.IDSA guidelinesareharmingmanymanychronicLyme sufferers. CarlTuttleTheonlinepetitionagainsttheIDSA membersLymediseasestudyhasgathered211 signaturesfromacrosstheUS,Canada,Germany,UK, Ireland,Belgium,France,andtheNetherlands.Please takeamomenttoreadwhypeoplearesigningthis petition. Therearenowsevenstateswhichhavepassed legislationtoprotectclinicianswhotreatlatestage Lymewithlongtermantibiotics(CT,RI,MA,MN,NY, NH,andTX)andtherearesupportgroupsinnearly everystatewithnineteeninPennsylvaniaalone. IftheIDSAandCDCgotitrightwiththeironesizefits alltreatmentapproachforallstagesofLymedisease andfaultytwotiertestalgorithmwhythendowehave thismuchlegislationinvolvingLymedisease? Petitionsite: http://www.change.org/petitions/subjective symptomsaftertreatmentofLymedisease CarlTuttle Hudson,NH Website: http://home.comcast.net/~runagain/site/?%2Fhome%2 F ShawnDenmanYoutohearthem,youtolookatthem andnotjustwhatthedrugandinsurancecompany'stell youtoseeandthink. ArielMarquetAlotofpeopleonherepostedpeer reviewedmedicalevidenceofpersistentLymedisease. Howisthatnotevidencebasedmedicine? HillaryLaughlinLymeDiseasegettheChangesthatare wayPastdue!! AlsoIDSASTOPBlockingLymepatients..Justforsaying theTruthofwhatLymeDiseaseIs!!!

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Dr'sneedgetfactsonthisandknowLymeis EveryWhere!!!!! IDSAComeonanddoWhatisRight!! DianeJ.Mariewww.ilads.org CarlTuttleIwouldliketobringtoyourattentionthe followingstatementfromtestimonybyDrPaulMead, MedicalEpidemiologistwiththeDivisionofVector BorneInfectiousDiseases,NationalCenterfor InfectiousDiseasesattheCentersforDiseaseControl andPrevention. Testimony: http://www.hhs.gov/asl/testify/t040129.html Nosurveillancecasedefinitionis100%accurate.There willalwaysbesomepatientswithLymediseasewhose illnessdoesnotmeetthenationalsurveillancecase definition.Forthisreason,CDChasstatedrepeatedly thatthesurveillancecasedefinitionisnotasubstitute forsoundclinicaljudgment.Givenothercompelling evidence,aphysicianmaychoosetotreatapatientfor Lymediseasewhentheirconditiondoesnotmeetthe casedefinition. FederalPublicLaw107166passedbytheSenateand HouseandsignedbyPresidentBushonJanuary10, 2002.WordingonthatbillstatesthattheCDC'scase surveillancedefinitionis"misusedasastandardofcare forhealthcarereimbursement,product(test) development,medicallicensinghearings,andother legalcases."ItalsoinstructstheCDCtocorrectthis misuse. TheCDChasdoneadisgracefuljobofcorrectingthe misuseoftheircasesurveillancedefinition. Forexample,youwillseetheCDCscasedefinition referencedinAetnasClinicalPolicyBulletinbelowbut nothingstatingthatitisforsurveillancepurposes only: http://www.aetna.com/cpb/medical/data/200_299/02 15.html CarlTuttle Hudson,NH Website: http://home.comcast.net/~runagain/site/?%2Fhome%2 F

DianeJ.MarieIDSApostedabove:"Providingguidance forexcellentpatientcareisourgoal,andrelyingon scienceandmedicalevidenceisthebestandsafestway toachievethat."Reponse:Thereisnotonewordof truthinthat. KennethPoindexterHeyIDSAIdidarandomsampling of1,861ofthecommentsthathavebeenpostedon yourquestion,herearesomestats: TotalCommentsParsed:1861 Lyme1341 HIV55 DrugResistent0 Tuberculosis4 DistinctPosters1188 KennethPoindexter^^^Thisishowyoumakeuseof data^^^ KennethPoindexterSeemstheresaclearinterestin havingtheIDSAreviewitsLymeGuidelines KennethPoindexterOh,moreinformation.Ifthe55 commentsthatpertainedtoHIV,45ofthosecomments alsomentionedLymedisease.Seemsevenpeoplethat careconcernedaboutHIVarealsoconcernedabout yourproblemswiththeLymeguidelines LaurieGeromelRobellItisclearthatthereisahuge disconnectordenialontheIDSAspartregardingchronic Lymediseasevsotherdiseases.Thereisahugeoutcry forhelp.Puttheresourcesintofixingthewrongs surroundingtheLymetreatmentguidelines.Quit pretendingitdoesn'texistorisn'tashugeofanissueas itis.That'sallweask.Thereare10sor100'sof thousandsofpeoplethatareaffectedbyChronicLyme Disease,andmanyaregoingundiagnosed,becausethe IDSAdefinitionofLymeissorestrictive,andthemedical andinsurancesystemsarefollowingthosevery restrictiveguidelines.Whyisthe2ndlevelLymeDisease WesternBlottestaccordingtoIGeneXstandardsnot runonmorepeople?TheELISAtestonlyscreens50%of Lymeinfectedpeople.Whydoesinsuranceonlycover 30daysofIVantibioticsforLymeDisease,whenthose thataregoingfor12yearsaregettingmuchbetter? Whyisn'tmoreresearchbeingdone?Whyisn'tother testingandotherLymeresearchexpertsbeing concernedinthedatathattheIDSAiscollecting?Thisis atravesty,andthoseofusinthemiddleofit,go throughhugeheartacheandexpensesbecauseofsuch restrictiveguidelines,thatareavoidingearlydiagnosis

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DebComptonVeneziaIamjustgonnabedirectandsay andthetreatmentrequired.Ifyouwanttohelp,bring inpeoplefromtheotherside,insteadofsimplydenying it;theysimplyjustdon'tcareifwefloodthemwith itdoesn'texist. questions.Theyjustdon'tcareaboutthelosswehave sufferedwith,iftheydidwouldweevenbeherestill KennethPoindexterPleaseexcusethetyposinmy demandingsomecommondecency?Weprotest,we comments,IamsufferingfromLymediseasetoo. writeletters,wetellourstories,butstillitliesondeaf ears.Therecomesapointwhenwemustjustrealize that"wethepeopletrulydonotmattertothem".Itis KennethPoindexterOfallthecomments,428indicated easyforthemtohideintheirfancyhomesanddrive thatsomeonewassuffering.Ofthose428,379are theirfancycars...Theyaren'tworriedaboutthese sufferingfromLyme,14aresufferingfromHIV,0are sufferingfromTuberculosis.Thisisaclearindicationof guidelinesbecausetheycanBUYtheirHealthCare! whereyouragencyneedstofocusitseffortsin2012.I'd Sadly,MoneyisPower!Iamsureifanyoneofuswere behappytosharemyresearchwithyou.Pleasecontact richenoughwewouldfindadoctorouttherewillingto meviaprivatemessageformoreinformationonhow treatusmedicallyandspeaktouswithrespect.That youcangetthisdatatoo. responseIDSAgave?ImeanC'monitissotalkingin circles...itislikewhenyahadareallytoughtestin DianeJ.MarieApostofminewasjustdeletedinthe schoolandyoutalkedyourwayintoabettergradethan lastfive.ItcarriedonlytheILADSlogoandtheirURL. youdeserved?lolIthinkmostofyouwillknowwhatI mean;IknowforsuretheIDSAdoescausetheyusethis KennethPoindexterOhwait,onemorestatforya.Of typeofmanipulationeverydayintheircarefully,clever responsewhichbasicallyoffersusNothing.I the1341commentsaboutLymedisease.525ofthose arepertainingtoChronicLyme.SeemsthatChronic DSAPanel,ifwhatyoudohelpspatientsandgivesthem Lymedoesexist. the"bestpossiblehealthcare"thanwhyareweallhere sayingwhatwearesaying?It SaraSchultzBuryingyour AlisonNashNeedelman Thereissomuch surelyisn'tforwealth;we responseina2,000+postis moreknownknownowaboutLymeand havenothingtogain, notanacceptableresponse, IDSA. itscoinfections.Youfavoroldandbiased actualitywehaveeverything research.PleasereviewtheLymeDisease tolose.Idon'twantany specialtreatment;Ijustwant DianeJ.Mariewww.ilads.org Guidelines presented at the tobetreatedwithdignity IOM(InstituteofMedicineCommittee) whenItelladoctormy SaraSchultzApparently,of alltheinfectiousdiseasesthe workshopandacknowledgethatallisnot medicalhistoryand symptoms.Ijustwanttobe IDSAprovidesguidancefor, knownaboutthisdiseaseanditsmanyco treatedwiththerespectI Lymepatientsappeartobe infections. deserve,insteadofbeing theleastpleasedwithyour guidance.... belittled.Ifyoudon'thave enough"evidence"toback StephanieVandagriffSorryDiane.Theyonlywantto upLymeDiseasethenDEMANDmoreresearchand seeandhearcertainthings.Anythingoutsidethe believeme...weknowthereisn'tenoughresearch...the last30yearstheinformationonLyme(tickborne bubbleisathreat,andbymesayingthis,mycomment diseases)hasn'tchangedthatmuch,thattrulyis isprobablygoingtobedeleted. pathetic.Maybewedon'tknowalltheanswers,maybe weallmightberightinsomeareasandwrongin AlisonNashNeedelmanThereissomuchmoreknown others...thepointisweneedtocometogetherforthe knownowaboutLymeanditscoinfections.Youfavor bettermentofthepublic,forpeopleswellbeing.These oldandbiasedresearch.PleasereviewtheLyme guidelinesshouldberewrittenbecausetheygive DiseaseGuidelinespresentedatthe doctorsandinsurancecompaniesandexcuseto IOM(InstituteofMedicineCommittee)workshopand neglect.YOUknowitdoes!Sighs,Idon'twanttobicker acknowledgethatallisnotknownabout withtheIDSA,IjustfeelyouNEEDtobackyourWORDS thisdiseaseanditsmanycoinfections. upwithACTIONS.

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....Showthepeopleweareimportant,showusthatyou workforUSandnotthepharmaandinsurance companies.SHOWusdifferentlyandIpromiseyouthen wewillbelieve.Untilthen...Ifeelweareallwastingour time,becauseNOONEislistening...theyjustsimplydo notcare!MuchLoveev1andblessings..andyesevento youIDSA,becauseIprayyouareneverpoor,Iprayyou areneverontheotherendofthesufferingyouhave contributedtoo...Ipraybecauseitjustisn'tinmy naturetowishharmontoothersjustbecausethey broughtharmontome.IchooseatthismomenttoNot letyourneglectandignoranceconsumemeanymore.I mighthavetosufferwithpaintilthedayIdie,Iwillnot getmedicalcarebecauseofyou,wewilldowithout much,butourheartswillbefullbecausewechosenot tobecomejustlikeYou,IDSA. NicoleMorterRecognizechronicLymediseaseforwhat itis,andstarttreatingpeopleinsteadofgivingupon them! DarleneFranklinKohlerFortheIDSAtoreallylookatall theusefulLymeDiseasedataandresearchwhichhas beengatheredbymanyphysiciansbutunfortunately hasbeenpreviouslyignoredbytheIDSA. RobinBurkeFerryman"AnhonestreviewoftheLyme DiseaseGuidelineslookingatthesciencepresentedat theIOM(InstituteofMedicineCommittee)workshop andacknowledgingthatallisnotknownabout thisemergingcomplexdiseasewithitsmanyco infections." SarahJeanIwouldliketheIDSAtostoppickingfor themselveswhattheydeemasscienceandwhat medicalevidencetheywillacknowledge. Howaboutthisforscientificandmedicalevidence: Iwasbittenbyseveralnymphsizedtickswhilehikingin anareanorthwestofLakeTahoe(inCalifornia,not Nevada).Ididn'trealizetheywereticksatfirst,and thoughtitwasjustspecksofdirtcoveringmyarm. ApproximatelyfourweekslaterIwashitwiththe craziestassortmentofsignsandsymptoms.Ididn't knowwhichdoctorIshouldgotofirst.Agynecologist? Arheumatologist?Acardiologist?Apsychiatrist?Ittook megoingtofourdifferentdoctors(Iamoneofthelucky oneswhoonlyhadtoseefourdoctorsbeforegetting help,ratherthanthedozensorhundredsthatothers see)beforefinallybeingtestedforLymeandco infections.MylabresultscamebackasCDCpositivefor Lymedisease.IalsohadaclinicaldiagnosisofLyme, Bartonella,andBabesia.

IwasprescribedaroundofDoxycyclinefor4weeks,but becamesymptomaticagainimmediatelyafterstopping theDoxy.Ithenrestartedantibiotictreatment,this timeunderthecareofaLymeLiterateMedicalDoctor, whorotatedandalternateddifferentantibiotics,anti malarials,supplements,andtreatmentsinfraredsauna andmassage.Aftertwoandahalfyearsofthisintensive regimenIwasfinallysymptomfree.Iwentfrombeing housebound/bedbound,unabletofunction,andin absolutemisery;tobeingabletoworkandexercise again,andsymptomfree. Sincefinishingtreatmentandbeingasymptomaticfor 3+years,Ihavehadbothregularphysiciansand infectiousdiseasedoctorstrytotellmethatIneverhad Lyme,andthatLymedoesn'texistinCalifornia.They toldmethiswithoutlookingatmyrecordsandwithout listeningtomystory.Theyheardthekeywordsof "California""Lyme"and"longtermantibiotic treatment"andimmediatelyblockedanyfurther conversation. Ridiculous. BethStormontReally,IDSA?That'syourresponse?!? REALLY?!?Whydidyouevenbothertoaskus?Thanks fornothing. CamAlteeBrownRememberthephysicianswhowere mockedforbelievinghandwashingcouldstopthe spreadingofgerms. Rememberthephysicianmockedforbelievingulcers werecausedbybacteria. Professionalphysiciangroupshaveheldsteadfastto theiroutofdatebeliefsatwhatcost? People'slives.People'sbodies.People'sfinances. LiveshavebeendecimatedbecauseWormseretaalare tooproudandstubborntosaytheywerewrong.They canfixthiswhiletheyarealiveortheycangototheir gravesclingingtotheirstubbornbeliefs,andtheLyme Communitywillensuretheirlegaciesreflectthe abysmalsocalledevidencebasedmedicinethey practicedthatharmedsomany. CamAlteeBrownHowmuchdoesDr.Wormserget paidtotestifyincourtonbehalfofinsurancecompanies bysayingheisrightandeverybodyelseiswrong?

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PatrickChristellIwilladdmyvoicetotheconsiderable chorusofpeoplesoundingoffaboutthis.Tome,itis simple.Iftheboardmembersaregettingmoneyfrom insurancecompanies,theirguidelineswillreflectthe whimsofthosewhobribedthem.Forgetscience,forget thehumantoll.Greedisthesicknessthathassweptthe world,andit'sespeciallysadwhenitspillsoverinto areasthataffectlifeanddeath.TotheIDSAboard members:Thewordisoutaboutyouandyourshameful "guidelines."Oncethewallstorealtreatmenthave beentorndown,andyourignominyisexposedtothe world,youwilljointheranksoftheforgottenmany whotriedtostandinthewayoftruthandprogress.This daycannotcomeamomenttoosoon.I'llsayitagain. Youwillallbeforgotten. RobinKropTolearnfromILADShowtotestforLyme andcoinfectionsandtreat.NottousetheELISAtestas ascreeningtestit'suseless.TouseIGeneXtesting,but knowitwillonlycatchpeople6070%ofthetimewho havetheinfections,sototreatclinicallybyhistoryand symptoms.Tounderstandlongtermtreatmentis neededforchronicLyme.Tohaveinsurancecompanies covertreatment.Tolearnfrompatients. MaryJaneSchroederHowotherone?Yes,pleasebe partofthesolutioninsteadofbeingtheproblem!The painandagonyofthousandsofLymeandcoinfection patientsisonthebackoftheIDSA!Reviseyour guidelinesandallowpeopletobetreatedproperlyso thatadultsandworstofall,ourpoorchildrendonot havetoliveinpainandloseportionsoftheirlife! MaryJaneSchroederWillthismessagestay? MarthaChampionIhavebeensickfor25years.Finally diagnosedwithLymeaftermanymanydoctors,many tests.InowhaveChronicLymeand25lostyearsofmy life.IfoundaLLMDandampayingoutofpocketformy treatment.Pleaseacknowledgethisdiseaseandhelp people.Wewillallhelpyouifyouneedhistories. LisaColletteO'NeilthetruthabouttryingtogetaLyme diseasediagnosis...andthenthetruthabouttryingto gettreatmentonceyoudogetadiagnosis...whichcan takeyears...thousandsofdollarsandthelossofones health,familyandfriendsintheprocess.itiscriminal whatLymepatientshavetogothroughjusttogetwell MarcusDavidssonIDSAwhydoyouclaimtorepresent sciencewhenyouinfactignorescience?

Harvey,W&Salvato,P()Lymedisease:ancientengine ofanunrecognizedborreliosispandemic? MedicalHypotheses,vol,issue,, http://www.ilads.org/files/harvey.pdf Lee,D()AnalysisofOverallLevelofEvidenceBehind InfectiousDiseasesSocietyofAmericaPractice Guidelines, ArchivesofInternalMedicine,vol,no, http://xa.yimg.com/kq/groups///name/Guidelines+e+n %C%ADveis+de+evid%C%AAncia_.pdf BrorsonO,BrorsonS()Aninvitrostudyofthe susceptibilityofmobileandcysticformsofBorrelia burgdorferitometronidazole,ActaPathologica, MicrobiologicaetImmunologicaScandinavica http://Lymepoland.com/pliki/p.Ga%C%%C%%C%%C%zi owska_.pdf BrorsonO,BrorsonS()Aninvitrostudyofthe susceptibilityofmobileandcysticformsofBorrelia burgdorferitotinidazole, InternationalMicrobiology,vol,pp, http://www.im.microbios.org/june/%Brorson.pdf BrorsonO,BrorsonS.()Aninvitrostudyofthe susceptibilityofmobileandcysticformsofBorrelia burgdorferitohydroxychloroquine, InternationalMicrobiology,:, http://www.ncbi.nlm.nih.gov/pubmed/ BrorsonO,BrorsonS()InvitroconversionofBorrelia burgdorferitocysticformsinspinalfluid,and transformationtomobilespirochetesbyincubationin BSKHmedium,Infection.vol,issue,pp, http://www.ncbi.nlm.nih.gov/pubmed/ BrorsonO,BrorsonS()Transformationofcysticforms ofBorreliaburgdorferitonormal,mobilespirochetes. Infection.vol,issue,pp, http://www.ncbi.nlm.nih.gov/pubmed/ Vrethem,M,Widhe,M,Ernerudh,J,Garpmo,Uand Forsberg,P()Clinical,diagnosticandimmunological characteristicsofpatientswithpossible neuroborreliosiswithoutintrathecalIgsynthesisagainst Borreliaantigeninthecerebrospinalfluid NeurologyInternational,volissue, www.pagepress.org/journals/index.../

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Dorward,D,Fischer,EandBrooks,D()Invasionand CytopathicKillingofHumanLymphocytesby SpirochetesCausingLymeDisease, ClinicalInfectiousDiseases,Vol.,Supplement,pp.SS http://cid.oxfordjournals.org/content//Supplement_/S.f ull.pdf+html?sid=aecccbcabf SueLarkinDuckworth "Providingguidanceforexcellent patientcareisourgoal,&relyingonscience&medical evidenceisthebestwaytoachievethat."Thatisa reallyfinemissionstatement,iftheanecdotaland scientificevidenceshowedthattobe trueaboutthe IDSA.Itisasadlydisconnectedselfimageyouhaveof yourselves.Twoseparate,publishedresearchstudies, byyourownIDSAmembers,disputeyourrelianceon scienceandmedicalevidenceinprovidingguidancefor excellentpatientcare.Yes,thatwouldbethebestway toachievethatgoal,butyouarenotdoingthat.The truthis,accordingtothestudies,only1in7IDSA treatmentguidelinerecommendationsusehighquality datafromclinicaltrials.MorethanHALFofthe recommendationsrelysolelyon"expertopinion"or "anecdotalevidence."And37%oftheIDSA'sstrongest recommendationsarebasedontheweakestevidence, whichwouldbeopinion,again,yetselfproclaimedto be"A"levelevidence.Andno'expert'onthecommittee takesexceptiontothisduringthemeetings?Thisdata wasbasedonreviewing4200IDSAguideline recommendationsissuedbetween19942010.One researcheradmits,"wearealloperatingonalotof bias...weallstrugglewiththis,evenasexperts..."The IDSArespondedindefense,notwiththoughtfulnessor objectivescientificintrospection"thepubliccanhave absoluteconfidenceintheseguidelines,&theyarethe bestthatscienceandmedicinehavetooffer."After thosestatistics?! PleaseletsomefactionintheIDSAstepoutsideofthe politicsandpowerandrescuethisorganization.The opportunitiestocorruptguidelinesaregreat.There havebeenmanyconflictsbetweenprofessionalswithin diseasestates,biasduetoresearchstudies,data enteredintoguidelinesbasedonpersonalinterests,or preservationofprofessionalreputationswhen guidelinesareshortontruemedicalevidenceandlong on'expertopinionandanecdotalevidence.'Thatis whenclinicianjudgmentandexperience,andpersonal researchshouldbeacceptedANDencouragedbythe IDSA. Ifonlyyoupresentedyourguidelineswiththis objective,unthreatenedapproach;nonprosecutorial

towardsclinicianswhotreatbasedonguidelinesand symptomsofindividualpatients.Beingascientist includesemptyingoutexpectations,observing,havinga criticaleyeandanopenmindtowherevertheevidence leads,whichitseemshasbeenreplacedwithjustbeing right,andthatyouknowbetter.Whatchanceisthere, forthesemerepatients,families,andfriends(someare doctors,too)whohaveearnestlywrittentoyouonthis siteaskingyoutolistentothemwithfreshears?What willpiercethiscallous,glazed,staredownyourIDSA nosesattitudetowardsthisbothersomecrowd,whoare messingupyourpageswithdifferentfacts,personal testimonials,andplentyofreasontoconsiderthatfora start,thethousandsofsymptomaticpeople,untreated duetofalsenegativeELISAresults,endupwithchronic Lyme?Whendoestheexcellentpatientcarebeginhere, Ichallengeyou? KarinLaMotheRecognizingchronicLymeDisease's existence.Onceestablished,ensuringpropertrainingof IDdoctorstoutilizeappropriateeffectivelabtestingfor Lymediagnosis.Somuchtraumaandsufferingare avoidableifdoctorsusedeffectivetestingmethods. SaraConnorPleaseanswermethisIDSA Howmuchmoneyhasbeenmadeoffthefaulty testingforLymeDisease? HowmanyAmericansaresufferingtodaybecauseof thesetests? Ifyouboardedanairplaneandtherewasa60%chance thattheplanewasgoingtocrashwouldyougetonthat plane? Wewouldbeveryluckyif40%oftheLymedisease casesarepickedupwiththecurrenttestingfromthe dearbornconference1994. Checkitoutforyourselves! thesepapersaretheFACTS!!!!!!!!!!!!! http://www.actionLyme.org/DEARBORN_WHO_SAID_ WHAT.htm SaraConnorTheIDSAhasit'shandsonthetailofatiger withLymedisease. TheybetterthinkabouthowtheyhandlethisMAJOR problem. SILENCEANDCHANGEINGTHESUBJECTWILLNOT WORK! OURNUMBERSAREGROWINGANDWEARENOWIN THEHALLSOFOURGOVERNMENTFROMTHESTATE LEVELTOTHEFEDERALLEVELGIVINGTHEMTHEFACTS ABOUTWHATHASGONEONWITHTHISDISEASE!

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ittoeverynewspaperinthecountryifIneedto.Wewill Moreandmoreelectedofficialsfindthattickborne notbesilencedanymore illnesseshavearivedattheirdoorstepsandtheytoo havejoinedusinthisbattle. MaryLaddHowaboutthis..Ifyou'renotgoingto KEEPUPTHEFIGHT!!!!!! changeyourways,atleastdothis MagorzataSzkutnikNotonlyAmericans,SaraConnor. MaryLaddthrowalineinyourguidelinesthatsays"if WesufferbecauseofIDSAallaroundtheworld.I'min youareunsurehowtotreatLymedisease,thendirect centralEurope,I'm30,myLymeis29andItrulyhate thepatienttoTheTurnTheCornerFoundationsothey IDSA. canhelpthemfindaLymeliterateMD."Yousee, anyonethatWEknowalreadyknowsaboutyou.Iam BillKlavonskiPeople...Thisisn'tgoingtogoanywhere worriedaboutthefuturepatientsthatdon'tunderstand untilitgetsintothehandsofthemajoronlinenews thismess.Whichbytheway,isabigmess.Thenyou outlets.TheIDSAcandeletethisthreadanytimethey don'thavetodeal,andthepatientcangetthecare wantandallthesepostswillhavebeeninvain.Doyou reallythinktheIDSAislistening?CNN,MSNBC, he/shedeservesRIGTAWAYinsteadofyourDr's Drudgeport,younameit.Getthisoutthere.Thishasn't thinkingtheycanplayGod.Thenslappingadiagnosisof goneviralyet!It'sstilljustafacebookpage.Helpme let'ssayforhaha'sFibromyalgiaonthem.Whichleads spreadtheword. metomynextquestion...whatexactlyisthat?Andwhat causesit?Justsaying. JenniferMerrittHefflerIwouldliketoseemore educatedhealthcareproviders,morefundingfor KimDeSantisGoodwinHowdoyousleep.knowingyour propertesting,andlesshassleforallaffectedwithLyme destroyingmillionsoflives? Disease.ItisabouttimethatLymehadmoreawareness (fromallparties)sothatwecanproperlydiagnose, BillKlavonskiKennethPoindexterAwesome.Thank treatandpreventit. yousomuch.That'swhatweneed. LaurieDamsellFaheyJustgiveupthisdiseasetoa LeslieLaughterEllmoreIunderstandyou(IDSA) differentareaplease..yoursciencemakesnosenseat supportingyourguidelinesandresearchthatyouquote allbecauseweareallstillsick..giveusabreakandjust tobackthemup...But,whateverhappenedto encouragingdoctorstobeinquisitive,asopposedto admitthatyouarecluelesswhatamess! dismissive?Ifyoudon'tthinkthatlymediseasecanbe chronic,thenpleasetrytofindanswers,andnotimply NicoleLeyaneThere'sachancethatmycommentwas (orstate)thatsymptomsareallinthepatients'heads. deletedaswell.LYMEDISEASE!Reevaluatethe guidelines!Thankyoutoallofthepostersforthe JeriHemerleinStopdeletingthepostsyoudon'tlikefor support! astart..thatwouldhelp LaurieDamsellFaheyPS NancyMcCaskey Ihavemedical MarilynEmersonSimsA Usingyourownresearchto insurance,yethavespent$50,000outof new,updatedand backupyourbogus pocketlastyearalonefightingLyme comprehensivelookatLyme guidelinesdoesn'tcount.Use disease,andmydaughterisdying.My disease,howitisdiagnosed, Lymedoctorshowcanyou howitcanbebetter insurancecompanywillnotcovermostof useIDSAdoctorswhoopenly treated/managed,and thetreatmentbecauseofIDSAguidelines. admittheydon'ttreatLyme Diseaseandturnyouaway?I investigatediligentlychonic These guidelines need to change. This havebeeninthissituation! lymedisease.Thanks. illnessisdevastatingfamilies. Haveyou??? January10at10:58amLike KennethPoindexterBill 11 KlavonskiAllofthese commentsarebeingbackedup.IDSAcandeletethis threadatanytime,buttheycantdeletethecomments. NicoleLeyaneI'msuremultiplepeoplehavesaidthis Iwillpersonallyprintoutthisentirethreadanddeliver already,butthesadthingaboutthisisthatweneed

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notorietytoFORCEchangetohappen...andsoooo manypeoplehavelymeanddon'tevenknowit. January10at10:59amLike10 CarlTuttleResponsefromU.S.SenatorKelleyAyottein referencetotheonlinepetitionagainstthewasteful LymediseasestudySUBJECTIVESYMPTOMSAFTER TREATMENTOFLYMEDISEASE Petitionsite: http://www.change.org/petitions/subjective symptomsaftertreatmentoflymedisease CarlTuttle Hudson,NH Website: http://home.comcast.net/~runagain/site/?%2Fhome%2 F January5,2012 DearMr.Tuttle: Thankyouforyourcommentsregardingresearch programsfundedthroughtheCentersforDisease ControlandPrevention(CDC).Iappreciatehearingfrom you. Likeyou,IbelievethatCDC'sfederalresearchdollars shouldbewiselyallocatedandusedformeritorious healthrelatedendeavors.CDCprogramsshouldbeheld tothehigheststandardsandmustbeclosely scrutinized. Asourcountryfacesaseriousfiscalcrisis,wehavethe difficulttaskofreininginamassivenationaldebt,while atthesametimeencouragingeconomicgrowthand providingadequatefundingforimportantnational priorities,suchasdiseaseandinjuryresearch.Wemust getseriousaboutcuttingallspendingthatisredundant, inefficient,orwasteful. Ideeplyappreciateyourconcernsthattaxpayerdollars usedtofundtheCDCbeusedresponsiblytocontribute towardbeneficialresearchprograms.Iwillcertainly keepyourcommentsinmindasIaddressthegrave fiscalchallengeswefaceasanation. Again,thankyoufortakingthetimetocontactme.As yourSenator,itisimportantformetohearfromthoseI representregardingthecurrentissuesaffectingNew Hampshireandourcountry.Pleasedonothesitateto beintouchagainifIcanbeofanyfurtherassistance. Sincerely,

KellyA.Ayotte U.S.Senator KAA/bf ValerieMainsWolfer http://lookingatlyme.blogspot.com/ SaraConnorWHOSAIDWHATATDEARBORN. THELYMETESTINGTHATWEHAVENOW SHOULDHAVENEVERBEENPASSED! WHOSAIDWHATATDEARBORN. 1)GaryWormseratNewYorkMedicalCollegeSteeres methoddetected9/59cases 2)IgenexSteeresIgGdetected8%ofthecases 3)ImugenSteeresmethoddetected14%ofthecases 4)WisconsinSteeresmethodwas15%accurate 5)UCONNLarryZemelwasreferringtoLymeas comparabletojuvenilerheumatoidarthritis. Recommendedaddingband50forchildrensblots. 6)Roche28%werepositivefor5of10SteereIgG bands. 7)Wadsworthhadsomedifferentscoringsystem.Did notreportonaccuracyofSteere 8)OntarioMinistryofHealth 9)LutheranHospital22%wereaccuratebySteeres IgG 10)MarDxLabsrecommendedaddingbands31and 34,butweregivenCDCpositivearthritispositiveblood tofalselyqualifytheirteststrips.Theirswereusedin bothvaccinetrials. 11)CDCAtlantatalkedaboutmice,nothumans.The mousecriteriawas2outofthreefromOspC,16kD, 17.9kD,forthemice. SusiKasterGlaeserWhycan'tyoumakeacomment ISDA???Nowyoudon'thaveawordtosay???Notone opinionorthought???Notoneresponsetotheover 2000infectiousdiseasesufferers....cowards! MeoDoyneYousay"Providingguidanceforexcellent patientcareisourgoal,andrelyingonscienceand medicalevidenceisthebestandsafestwaytoachieve that."ANDIsay,whatabouttakingintoconsideration theclinicalevidencesomeofwhichyouhavebefore youinresponsetothispost.Medicineandsciencehave NOTfullystudiedsuchacomplexorganismasLyme Diseaseorthecoinfections.Youneedtobase treatmentguidanceonthesuccessoftreatmentforthe patience,whichhasbeensorelylackingunderthe currentprotocols...

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JeanHemondWhataboutBabesiafromLymeco infectionsinthebloodsupplybeingthemajorfactorin manygrowingneurologicalsyndromes. ShannonEvansRobertsIwonderwhatwouldhappenif themajorityofthepowersthatbeinyourorganization becameinfected/sufferedwithLymedisease/Chronic Lymedisease....wouldyoutakeitseriouslythen???? Wouldyoucontinuetoputtheissueonthebackburner whilepeoplecontinuetosuffer???Justathought...... MaryDeLisserNo,they'dtreatitasitshouldbe. MartinaBussmannFaurschouChangetheLymedisease guidelines!! StephanieVandagriffForthoseofyouwhodon'tknow, theIDSAdidrespondtoourpost.Itwasacrap response,butstillaresponse. www.lymedisease.org/news/touchedbylyme/idsarespo nse.html BonnieOKeefeFirst,Idon'tconsidertheIDSA"MY" society.....!IwouldliketoseeyourguidelinesonLyme reviewed,(withALLnewsourcesofscientific informationandresearchavailable),updatedand broughtintothe21stcentury.Iwouldliketoseeyou havecompassionforthesufferingofthousandsof peopleinthiscountryandworldwideandbetruthful andhonestconcerningtheexistenceofandtreatment forchronicLyme.IwouldliketoseehowYOUdealwith yourfamilyandlovedoneswho,Lordforbid,contract Lyme.IwouldliketoseetheIDSAreturntothe protectionofthecitizensoftheUnitedStatesastheir #1priority.Iwouldliketoseeswiftandhonest educationofallmedicalpersonnelconcerningthetruth andtreatmentofLymedisease.Allthisiswishful thinking...hopefullyinmygrandchildren'slifetime? DouglasMaassIwouldliketoseeamorerational, reasonedapproachtochronicLymeDiseasefromIDSA, onethatrecognizesitsexistenceandactuallytriesto offerunderstandingandrelieftothousandsofvictims currentlybeingignoredorbeingtoldit'sallintheir heads. IngridBoutilierMcAdamIrecentlyreadacommenton herethatreferred/dubbedtheIDSAasthe"WhiteCoat TailedMafia".Whichisabsolutelyuntrueand unworthy!Youfolksandyourorganizationshouldnot beregardedinthisclass.TheMafiaisquickerand cleaner,theywouldn'tleaveyoutosufferfor

decades...norarethey,asfarasIknow,intomurdering innocentchildren.No......youguysareinaclassofyour own. MaryDeLisserWellsaid,Ingrid.TuskegeePhaseII?? MichelleNewellActually,thefactthattheCDCusesthe IDSA'sLymeDiseaseguidelinesmakesthemjustas guiltyofneglectastheIDSA.TheIDSAwaschargedwith giving'bestpracticesbasedonsoundscientificdata withoutbias'guidelines'totheCDCandinsteadthe IDSAhasfalselyprovidedinaccurateandfraudulent informationtotheCDCregardingtreatmentofTick bornediseases.Ifanything,theCDCshouldbenotified oftheIDSA'sinabilitytoprovideaccuratedataand guidelinesthathaveputhundredsofthousandsof peopleatriskofillnessanddeathandimmediatelycall aninvestigationofthesefacts. WendyVogtAt12:41yesterday,IDSAaddedaresponse tothisthreadscrollbackifyouwanttowasteyour timereadingit.Itwaspatronizingandshowedno interestwhatsoeverinthisdisease.None.Spendyour energypromotingthosegroupsthatAREontopofthe latestmedicalinfothesepeoplearen't.GiveILADSthe attention...thesepeopledon'tdeserveit. MaryDeLisserIrespectfullydisagree,Ithinkweare gettingtothem NancyMcCaskeyIhavemedicalinsurance,yethave spent$50,000outofpocketlastyearalonefighting Lymedisease,andmydaughterisdying.Myinsurance companywillnotcovermostofthetreatmentbecause ofIDSAguidelines.Theseguidelinesneedtochange. Thisillnessisdevastatingfamilies. CarolHannaWilsonI'dlikeforthisdiseasetobe broughtintotheforefrontsothatdoctorsarelooking forthatinsteadofsendingusallovercreationtobetold wehavelupus,chronicfatigue,delusions, hypochondria,etc.Ifregulartestingforthisdiseasewas done,somanycaseswouldbecaughtandtreatedand heartacheandmoneywouldbesaved.MysonandIare stillintreatmentgoingon11/2years.Myfamilywillbe testedeveryfourtosixmonthsfortherestofourlives. I'vepaidsomuchoutofpocketfortreatmentthat preventionandearlydetectionfortherestofmyfamily iswellworththemoney.Forgoodnesssake,theflushot isallovertheplaceandIwouldn'tputitinmybody,yet millionsarespentbrainwashingpeoplethatit's necessary.Thewasteofmoneyonthingswedon'tneed

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isOK,yeteducationontickborneillnessesisnon existant. MelissaAnn"thepubliccanhaveabsoluteconfidence intheseguidelines,&theyarethebestthatscienceand medicinehavetooffer." Actually,theyarenotthebestthatscienceand medicinehastooffer(WEHAVEILADSThank goodness!).Thereisnotmuchsciencebehindthemat all....justthesocall"expert"opinionsofcorruptIDSA panelmembers....Iftherewasnoproblemwithconflict ofinterestattheIDSA,whydidSenatorBlumethalneed tolaunchanantitrustinvestigation? Also,I'mjustcuriousbutwhycan'tIdonateblood(I haveChronicLymeDiseaseandBabesia)?Isthatbased ontheopinionsofdoctorsandorvolunteersattheRed Cross?Ifso,wheredidtheygetthisideafrom?I'malso seriouslywondering...ifIcan'tdonatebloodbecauseI haveChronicLymeDiseaseandBabesia...whyhasmy OBGYNnotwarnedmeabouthavingmorechildrenand passingthoseinfectionsontothem? MelissaAnnIfsyphiliscanbepassedtoanunborn child....whycan'tLymeDisease? MelissaAnnIwouldlikespecificanswersplease!Iwant toknowwhy.Ifyouknowtheanswerandyoucanstate itanywhereasaFACT....anexplanationshouldnotbe difficult. MaryLaddIfyouatsomepointansweranyofthese questionsIhaveonemore.Howdidyouignoreallof thestudiesDr.StevenPhillipspresentedtoyouin Washington?Thataloneispuremadnesstome. PatsySwinsonIsn'tANYBODYintheIDSAlistening? Doesn'tANYBODYtherecareatall?Guessnot. KathieFriedleyTheIDSA'sholdonlymedisease treatmentwillberememberedhistoricallyasacolossal debaclefueledbyarrogance,greed,andhubris.Revise theguidelines!Revisetheguidelines!Revisethe guidelines! IanStarkMymotherhashadLymeDiseaseforover2 years,andthosehavebeen2yearsofherlifelargely spentimmobilelayingonthesofa.Ifyourguidelinesare notreviewed,thousandsuponthousandsofotherswill suffersimilarly.ChronicLymeDiseaseexists,and anyonewhodeniesitisawormwholiedaboutthe HippocraticOath.

MeoDoyneWhydon'tyoucontactDr.Waisbrenor readhisnewbookfor51casesthroughouthis treatmentofLymeDisease?Heusedtobeafellowof yourgroup,butturnedhisbackfromthe"darkside" andnowbelievesinChronicLymeDisease... SethUrguessisasgoodasminewhycan'tyoujustaccept theFACTthatchroniclimediseaseisreal,andit'snot likeit'sasmalldiseasethatonlyaffectsafewpeople,it isaffectinghundredsofthousandsofpeople,allof whomsimplywantacureforthediseasethathastaken somuchoftheirlives.ifyoucansleepatnightknowing thathundredsofthousandsofpeoplearesuffering badlybecauseYOUareindenial,thenipersonallyam downrightsadtothinkthatiamamemberofthesame speciesasyou. PamelaLinkAdamsPleaserevisetheguidelinesforthe diagnosisandtreatmentofchronicLyme'sdisease!This diseaseisnowinepidemicproportionsandsomanyare suffering,dying,andgoingbroketryingtoreceivethe treatmenttheyneed.Pleaserevisetheguidelinesand recognizethisdisease,sopatientscangetthe treatmenttheysodesperatelyneedandhavetheir insurancehelpcovercosts. PamelaLinkAdamsPleaserevisetheguidelinesforthe diagnosisandtreatmentofChronicLyme'sDisease.This diseaseisnowinepidemicproportionsandsomanyare suffering,dying,andgoingbroketryingtogetthe treatmenttheyneed.Pleaselistentothesepatientsand givethemthehelptheySOdesperatelyneed! GayleBarlowWhatisgoingonhere?Iamthegeneral public,butIpersonallyknowofmorepeoplesuffering fromthisdiseasethanfromanyotherdiseaseincluding MSandcancer.Thesepeopleareyoungpeoplewitha diseasethathasdevastatedtheirlivesbothphysically andfinancially.Wewanteveryonetohearwhatisgoing onandtohearthatfinancialhelpisbeingwithheldby _________...bywhat?inadequateguidelinesfromthe IDSA,bypolitics?Letusseesomemajorchangesin theseguidelinesimmediately.Letusfindoutthetrue reasonfortheseinsanepolicies. KyleRiderYourscienceandmedicalinformationis skewedandoutdated.Yourguidelinesareaswell.28 daysofantibioticsforLymeDiseasebutayearormore forWhipples. AnneMcCrackenChronicLymeDisease.Pleasefacethe factsandrevisethetreatmentguidelines.

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SusanChristellDittmanIwouldaskthattheIDSA DouglasD.FrieAcknowledgeChronicLymeDisease developaprotocolthataddresseshelpingand exists.Untiliteffectsyouoroneofyourfamily membersitwillneverhappen. educatingthosewhosufferfromLymeDiseaseaswell asthoseinthemedicalfield.Thousandshavebeen LynnKayAcknowledgementofLymeDiseasetheREAL spentonHIV&Cancerresearch&education.Lyme truth,notafewantibodicsandit'scured,therealstory, seemstobeforgotten.Personallymyfamilyhasspent frompeoplelikemewho'vehadit,undiagnosed/ thousandsontryingtodealwiththediseasewithno misdiagnosed,theREALaffects,howitcandestroyyour realhelpordirectionfromthemedicalfield.Thisisnot adiseasebroughtonbylifestyle,genetics,orpoor lifeandkillyou.Whydoesittakeafamouspersonto choices.Itissimplycaughtbyhavinganinfectedtic getthewordout,thereareplentyofuswhohavehad decidetoattachitselftoyourUNLUCKYbody.HIV, thisHORRIBLEdiseaseandwanttospreadthewordof Cancerandmostotherdiseasesarecovered(atleastin whatitreallyisabout.Ichallengeyoutomakeitright! part)byinsurance...notLyme.Why?Physiciansseemat alossastowhattheyunderstandandhowtheywillbe PatsySwinsonIknowawomanwithallthesymptoms ofLyme.Sheaskedmehowshecouldgettested.Itold allowedtotreatthepatient.Isthisawayto"improve her"Whateveryoudo,DON'Tgotoanyonewhoisa patientcareandhealth"?Iwouldreallylikesomeone memberoftheIDSA,oranysocalled"infectious withIDSAtogiveafullexplanation.Thisisnotadisease thatisgoingaway,itisgrowingandifyoudidyourjob disease"specialist".Shewasunderstandablyperplexed. youcouldactuallybeapplaudedforsavinglivesinstead Soareweall. ofhelpingcausethelossesorsideaffectsthat,bythe way,costthepatient&theinsurancecompaniesmore SusanChristellDittmanIwilltrytokeepthisshortand inthelongrun. tothepoint.ConfirmedLymeDiseasecasesare WORLDWIDE,notjustafewcasesbutthousands.Ifyou KellieStarkeyPetrickAfair,reasonableandethical ,theIDSAareseriousaboutyour"Mission"statement, treatmentofLymewhicheventheCDCcallsitthe thenImustaskwhyLymeDiseaseistreatedasitis? countrysfastestgrowinginfectiousdiseaseneedsto KennethPoindexterOfthe2100+comments,over1363 comeMORETOLIGHT ofthemcontaintheword"lyme".Over500ofthem containtheword"chronic".Doesthisindicatethat KimDeSantisGoodwinYourguidelinesareruining "chroniclyme"exists? families,destroyinglivesandleavingusinahopeless stateoftorturedpain.Pleasecareaboutpeopleanddo KennethPoindexterPatsySwinsonMakesureyoutell yourjob.Mygoalinlifeiseverydaytohelpothers.Our csildren,husbands,wives,mothersandfriendsareallin hertoALWAYSlookfortheFIDSAthattheyputintheir listoftitlesandifyouseeit,RUN. yourhandstofinallybehonest. Justbecauseadoctorisan Movingforwardnoteventheyears Lisa Dungan Roth An honest infectiousdiseasespecialistdoesnt wealllostofourlivesjustdont reviewoftheLymeDisease meantheyarepartofthissociety. takeanymoredaysaway.Dontlet TherearegoodIDdocsoutthere. peoplethinktheyarecrazyand Guidelineslookingatthe Justgottolookfortheonesthat havesomestupidpostlymemade sciencepresentedattheIOM dontsupportthesocietyandare upthing.Unlessyouhavehadthis (InstituteofMedicine opentothefacts. nightmareillnessyoudontknow Committee)workshopand howwrongyouare.Ifyouwatched GraceWollertChangetheLyme your childscreamingatnightthat acknowledgingthatallisnot Diseaseguidelinesstopand theywanttodiefromthepainand knownaboutthisemerging preventsufferingandpain!Educate yourheartisbrokenandyoursoso complexdiseasewithitsmany sickyoucantevenstandyourself Doctorssotheycantreatpatients. either. coinfections. StephanieMichelleKealysoooare Doyouevenresearchthesuicide youjustgoingtoblockallofus goingonfromthis.Thedeathswithlymedisease frompostingonthissite? actuallylistedascauseofdeathandtheaddictionsfrom thepainmedicineneverbeingenoughtoeventakethe

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edgeoffthepain.Thetwopeopleinthepicturetothe leftarerealandigavelymedisesetothatbeautiful littlegirlandrightnowiamlayingnexttothemani lovewhilehehadtotakesleepingmedicine,anxiety medicineandmelatoninwithpainmedicinetosleephis firsttimein3days.Heisstillshakinghishandsfromthe tinglingandpaininhislegsandhands.Hewasborn withaheartconditionandthisillnesshashurthisvalve more.Onefullyearnowoftreatmentandheissomuch bettermostofthemonthbutinnowayisitgone.There issomuchinvolvedwiththisslowrecoveryprocess. Mylymedrsavedmyfamilywhendozensofdrsfailed us.Mylifeturnedupsidedownmotherof5soicantlay inbedbutiamintearstryingtohavethemlivea normallifeandnotjustremembermomissick.When imhomeilaydownfallingasleepsittingupandthepain iseverywhere10monthsintotreatmentandicansee betternow,mybrainfogislifted,myflusymptomsare onlyaweekofthemonthonaverage,coldandhot sweatssomuchbetternowaftertreatmentformyco infectionbabesia.Iamseeingthelightbutstillnoway wouldibereadytogooffantibiotics.Itwouldallcome backandiwouldloseanother6years.Nobodyshould everhavetostarttreatmentoverafterallthehellthey havebeenthrough.Wearerealandourcriesforhelp arefilledwithpain.Pleaselisten CheriCoussanWonderwhoyou'dwanttotreatyour mom,wife,sister,daughter,brother,son,lovedoneifit turnedouttheirfatigueanddepressionofafewyears wasactuallyLyme!?!MemberofIDSAorILADS?Thisis nothingshortofdiscrimination.Bywayofyourarchaic guidelinespeopleareunabletogetassistancefromthe insurancecompaniesthataresupposedtohelpa claimantmitigatecosts.Disgraceful. KarenSmithAndyesifyouread/clickonmy name......IamanAussieSowhydoIDSAguidelines mattertome???Becausetheyaffectthousandsand thousandsofpeopleworldwide....TheIDSAguidelines havemanagedtobringpeopleworldwidetogetherto fighttheinhumanesufferingthattheignoranceof researchbringsabout.....TheLymeguidelineauthors haveitcoveredtwooftheauthorsarefromEurope (StanekandStyrle)andensurethatthesamemessageis adheredtooverinEurope.......ThenyouhavetheHPA; HealthprotectionagencyinEuropewhose "independentreview"statesthatILADSguidelines shouldntbeused.....FunnythatO'connelwiththeHPA inEuropeandwritesarticleswiththesameIDSALyme guidelineauthors......SoflawedIDSAtreatment guidlelineshavemeantthatthewholeworldsuffersfor

thegreedofacoupleofdozenindividuals...TheIDSA shouldstopbackingtheseindividualsreadthefacts andscientificfindingsyourselfanddemandtheright thingbedone!!!!! LisaDunganRoth"AnhonestreviewoftheLyme DiseaseGuidelineslookingatthesciencepresentedat theIOM(InstituteofMedicineCommittee)workshop andacknowledgingthatallisnotknownaboutthis emergingcomplexdiseasewithitsmanycoinfections. SarahSilverYourLymeDiseaseguidelinesurgently needchanging,somanypeoplearegoingthroughhell becausethey'vebeenmisdiagnosedorgivenjustfour weeksofantibioticswhichwouldonlytreataveryearly infection.Doctorsareafraidtotreataggressivelyfor fearoflosingtheirlicensesandpatientsaresuffering anddying.Pleasedosomething,IDSA.Thetruthwill comeoutintheend,youwillsurelycomeoutofthis betterifyouchangeyourguidelinessoonerratherthan laterandbeforeitbecomesmassivenewsinthepress, whichisboundtohappenoneday. BirgitJrschikBusbachLikeDr.Burgdorferhassaid:It's ashamefulaffair. EdytaGaziowskaIDSA>lookat summary:http://www.tvmed.pl/tresci/6764/Falszywie ujemnewynikitestowserologicznychwkierunkuand page102: http://books.google.pl/books?id=VnbOKWQHOD0C&pg =PA97&lpg=PA97&dq=%22kompleksy+immunologiczne %22+++borelioza&source=bl&ots=5wIDiGIBUQ&sig=MH Vrq_vCJlY4Pbw7AjsMJ2yYYAQ&hl=pl&ei=hTXpTbPNH4 OWOvvh1bEB&sa=X&oi=book_result&ct=result&resnu m=2&ved=0CCoQ6AEwAQ#v=onepage&q=%22komplek sy%20immunologiczne%22%20%20%20borelioza&f=fals e BonnieKostiukGosh,Idontknowwheretobeginbut IvereadenoughcommentstocoverwhatIwanttosay. DoctorsneedtobeencouragedtotreatLymeASAPfor howeverlongisneededviapatientsymptomsrequests. ValerieWoodsSomanyofmyfriendsandfamily membersaresuffering.Somehavehadtheirlives devastated.Changetheguidelines! RobinGunnTheIDSALymetreatmentguidelinesarea disservicetoyourprofessionandyourpatients.The guidelinepaneliskeepingIDSAdoctorsignorantand

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fearfultotreatLyme.Avastamountofbasicscientific andphysiologydataisignoredintheguidelines. RobinGunnItrytounderstandthemotivationsofthe inrealitysmallnumberofdoctorsthatbuiltthisidsa houseofcardsLymeguidelines.Isitmedicalinsurance companies?That'scomplicated.Surelytherearemany peoplewithuntreated/misdiagnosedLymewhocost theirmedicalinsurancecompaniesalotmoremoney thanthecostofIVantibiotics.It'spossiblethatenough peoplewithLymelosetheirinsuranceand/orthe energytofightforcaretokeepitprofitable.Ithinkit's somethingelse...IthinkforindividualIDSAdoctors,it's fearofmalpractice.Theguidelinesprotectthemagainst aLymelawsuit.Furthermore,ourhonestrequestsjust confirmtheirsuspicions(andwhatthey'vebeentold) thatlymepatientsarecrazy&demanding.Forthe guidelineauthorsIthinktheyaremotivatedby somethingmorethanmoneyego.Theyhavebuiltlarge careersonbadscience.InacademiaPhDs&MDswould ratherdiethanadmittheyarewronganything.These trencheswereduglongago.It'sunlikelytheywillever comeout.LymepatientsIthinkwearejusttalkingto eachotherontheirpage. KaetheMitchellThesunisup,it'sabeautiful,though cold,day.29degreesandnosnow.Thetickswillfreeze inthisweather,Ithink.Noblanketofsnowtoprotect themuntilthenextwarmdaywheretheywillemerge tobiteanothercreature.ButwhyamIreallywriting rightnow?Upstairsmydaughteriscryinginbed becauseshewantstogotoschool,butistoosicktoday, andwashomeyesterdayaswell.Sheisnotmakingup hersymptomstoavoidschoolandlife.Sheisnot experiencingtheachesandpainsofdailylifeatage14. ShemadetheJVcheersquadthisfallandwasaskedto competewiththeVarsitythankstoherILADSLLMD gettingherwell.Butsheisnotwellenoughyettoknow withconfidencethatshecanwakeupfeelinggood everydaylikeshedid,yearsago,whenshewashealthy, backbeforeshehadtogiveupeverythingwhenher worldcamecrashingdownwithneuroborreiliosis, bartonellaandbabesiosis.Sheisstrongand determined,butthisdiseaseknocksthestrongand determinedontheirgluteimaximi.IfIDSA'sguidelines werenotsorestrictive,shewouldnotbeinthisshape. Itistimetochangethem.Whatareyouwaitingfor? Ouryoungpeoplearethefutureandtheirlivesare beingstrippedawaybyalifetimeofillness.Illnessthat canbeprevented.

BillKlavonskiI'dliketoknowwhyteenagerswithACNE canbeonopenendedABXtreament,whileweLyme patientsaretold,30daysandyou'redone.Really?So, zitsaremoreimportantthanthisterribledisease? WhereistheworryaboutABXbeingoverprescribed whenitcomestoACNE?LimittheirABXandyou'dsee peoplepitchafit.Lyme?Nobigdeal,right? BillKlavonskiTimetostoptalkingtoourselveshere. We'vegottogetthisouttothemedia,NOW! January11at9:30amLike13 CarlTuttlePleaseviewthefollowingletteraddressedto theDirectoroftheCDC,FortCollins Nov27,2011 CDCOfficeoftheDirector 3150RampartRd FortCollins,CO80521 LylePetersenMD,Director DearDrPetersen, Thankyoufortakingthetimetorespondtomedirectly regardingmylettertoSecretarySebeliusconcerning faultyLymediagnostictests.Thoseofuswhohavebeen harmedbythetwotiertestingalgorithmfindita conflictofinterestwhentheDirectoroftheCDC stronglyrecommendsonlyFDAapprovedantibody testsforthediagnosisofLymediseaseespeciallywhen employeesoftheCDC(BarbaraJohnson)holdpatent interestsinthesefaultytests. ThisisnotthefirsttimeLymetestreliabilityhasbeen questionedandpatientexperiences(casestudies) ignored.Studieshaveproventhatthesetestsareutterly uselesswhiletheCDCcontinuestodenyanyproblem. AdvancedLaboratoryServicesBorrelliaculturetesthas proventhatpersistentinfectionorchronicLymedoes infactexist. TheletterbelowsenttotheCDCsFinancial ManagementOfficeandcopytoSecretarySebeliusis petitioningthewastefulLymediseasestudiesfundedby theCDC.IsearchedotherLymestudiesthroughtheNIH RePORTERportalandfoundmostotherLymestudies werefundedbyNIAD,NCRRetc.butnoothersfunded bytheCDC. http://report.nih.gov/rcdc/categories/ProjectSearch.as px?FY=2008&ARRA=N&DCat=Lyme+Disease

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ignored.Studieshaveproventhatthesetestsareutterly IfoundthisquiteoddIsthiscollaborationbetween uselesswhiletheCDCcontinuestodenyanyproblem. theCDCandtheWormserdenialistcamp? AdvancedLaboratoryServicesBorrelliaculturetesthas Sincerely, proventhatpersistentinfectionorchronicLymedoes infactexist. CarlTuttle Hudson,NH TheletterbelowsenttotheCDCsFinancial Website: ManagementOfficeandcopytoSecretarySebeliusis http://home.comcast.net/~runagain/site/?%2Fhome%2 petitioningthewastefulLymediseasestudiesfundedby theCDC.IsearchedotherLymestudiesthroughtheNIH F RePORTERportalandfoundmostotherLymestudies werefundedbyNIAD,NCRRetc.butnoothersfunded Petitionsite: bytheCDC. http://www.change.org/petitions/subjective http://report.nih.gov/rcdc/categories/ProjectSearch.as symptomsaftertreatmentoflymedisease px?FY=&ARRA=N&DCat=Lyme+Disease IfoundthisquiteoddIsthiscollaborationbetween BillKlavonskiI'dtoknowwhyteenagerswithACNEcan theCDCandtheWormserdenialistcamp? beonopenendedABXtreament,whileweLyme Sincerely, patientsaretold,daysandyou'redone.Really?So,zits aremoreimportantthanthisterribledisease?Whereis theworryaboutABXbeingoverprescribedwhenit CarlTuttle comestoACNE?LimittheirABXandyou'dseepeople Hudson,NH pitchafit.Lyme?Nobigdeal,right? Website: http://home.comcast.net/~runagain/site/?%Fhome%F BillKlavonskiTimetostoptalkingtoourselveshere. We'vegottogetthisouttothemedia,NOW! Petitionsite: http://www.change.org/petitions/subjective CarlTuttlePleaseviewthefollowingletteraddressedto symptomsaftertreatmentofLymedisease theDirectoroftheCDC,FortCollins DanielArmstrongMywifewentundiagnosedfor Nov27,2011 approx.16yrs...afterbeingmisdiagnosedashaving everythingunderthesunapreciousMDwewerelead CDCOfficeoftheDirector tofinallydx'dLyme....thatwasthreeyearsago.Shehas 3150RampartRd missedoutonsoooomuchanddailystrugglesto"push FortCollins,CO80521 through".Whatifthe guidelinesweredifferent, LylePetersenMD,Director EranNilsRedick Wasthecauseofthe thatdoc'sactuallyhadbest LymeCToutbreakdirectlyrelatedto practiceguidelinesfromtrials DearDrPetersen, researchonPlumIslandonbiological andcasestudiesfromdoc's weaponry? Fully supported by the US actuallyfightingthisdisease Thankyoufortakingthetime torespondtomedirectly andwinning.Thingswouldbe government? regardingmyletterto differentformywifeandfor SecretarySebeliusconcerningfaultyLymediagnostic myprecious4yearolddaughter...whoisbeingtreated forLymediseaseforthesecondtimeinherlife.My tests.Thoseofuswhohavebeenharmedbythetwo daughterwaswhenshetestedpositiveforLyme....she tiertestingalgorithmfinditaconflictofinterestwhen contracteditinuteroorthroughbreastmilk...before theDirectoroftheCDCstronglyrecommendsonly FDAapprovedantibodytestsforthediagnosisofLyme yousay..that'simpossible..whatdoyouthinkthelihood diseaseespeciallywhenemployeesoftheCDC(Barbara ofaoneyearoldbeingbittenbyatickoutinthewoods Johnson)holdpatentinterestsinthesefaultytests. wouldbe???Thingswouldbedifferent...wewouldnot berubbingmydaughterslegseverynightbeforeshe ThisisnotthefirsttimeLymetestreliabilityhasbeen goestoobedandinthemiddleofthenightbecauseshe questionedandpatientexperiences(casestudies) isscreamingthatherlegshurtandherlegswon'tstop "squirmingaround"...mywifeandIwouldneverhave

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GranddaughtersufferwithLymeandthereisnothingI hadtohaveadiscussionayearandahalfago...planning candobutlovethemandprayerforthem.YOuhavea thatshewouldnotbearoundduetohowsickshewas.. chancetochangethelivesofmanypeoplethatare andwhatIneededtodowithourdaughtersfuture withoutamother.IDSA...youcanchoosethisdayto sufferingandletthedrs.treatthemlonger. makethingsdifferentformillionsofpeople.Setbest practiceguidelinesaccordingtotheempiricalevidence EranNilsRedickIwastreatedbasedonsymptomsfor intrials,andlistentopractionerswhoareactually Lymedisease,atesttakenatthattimeindicatedIwas treatingLymeandwinning.ThankYouforyourtime. infactpositiveforLyme.SometimelaterafterIfelt betterandwentthroughthe MelissaRascioBillKlavonski TimLambTheIDSALymecommittee courseofantibioticsItested positiveforLymeagain someantibioticswillneverbe kickedoffonememberwhodisagreed anotherroundofantibiotics. usedorneededforserious withtheconsensusonthetreatment infectionsthatwhymy Nowthetestcomesback rheumatologistsaiditwasok guidelinessotheycouldhavea negative.Imustbecured togivememinocyclinelong unanimousapprovalandthechair termforRA(WHICHIKNOW nowcorrect?Imeanthetests resigned but the IDSA allowed this. The ISNOTREALLYRA!!!)butthat arehighlyreliableandI elisa/westernblotscreeningdiagnosis washisreasoning. shouldnotworryorbe retestedcorrect? wasinstitutedinaperiodwheretheCDC AmandaBlakerWow,IDSA OnedoctortoldmeImust perceivedanoverdiagnosisandover pleasetellmehowthese havebeenbittenontwo treatment. Now we have under diagnosis thousandsofcommentsfrom separateoccasionsthatwas wheremedicalprofessionalsconsider livingindividualswhoall whythedoublepositive, sufferfromLymeDiseaseare symptomspsychosomaticanddon'teven sure,whynot. allwrong.Wearewrong runaWesternBlottoseeiftherehas EranNilsRedickWasthe right?Weareindebtinthe beenexposuretotheLymebacteria. causeoftheLymeCT thousands,takeaplethoraof meds,havebeentodozensof outbreakdirectlyrelatedto 'specialists'andwere researchonPlumIslandon diagnosedwithBSrheumatologyautoimmunediseases biologicalweaponry?FullysupportedbytheUS thatAREN'TREAL!Lupus?Really?Thatwordisabig government? excusefor'wedon'tknow'.Youshouldbeashamedof youselves,youaresupposedtohelppeoplethrough CamAlteeBrownIwisheverymemberoftheIDSA scientificdataandyouaren't. wouldtakethetimetoread"CureUnknown"byPamela Weintraubaleadingmedicaljournalist. LorriCareyPleaserevisethemedicalguidelinesdefining http://www.cureunknown.com/ treatmentoptionsforLymeDisease.Peopleare sufferingandneedthepracticalmedicalsupportofthe SaraConnor IDSAandinsurancecompanieswhichhasbeendenied http://www.youtube.com/watch?feature=player_embe todate. dded&v=LOXNlCW TiersaBuckleyHowaboutstartingwiththeIDSAand DonnaM.CutilloIhavedevelopedacloserelationship insurancecompaniesacknowledgingthefactthat withaLymeDiseasepatientandIhavereadextensive "ChronicLymeDisease"doesindeedexistandthatalot informationonLymebecauseofher.Asaprofessional ofsickpeopleoutthereisyourproofthatsometimes30 inthehealthcarefieldforover30years,Ifindit daysofantiobioticsarenotenough!Doctorsneedtobe extremelysadandquitedisturbinghowtheIDSA treatingpatientscorrectlyandhittingtheLymehardas respondstoobviousandrealfactsbroughtothemby soonasitsdiagnosed! LymepatientswhichtheIDSAcontinuestoignore. PLEASEopenupyourmindsandheartstolinesof CarolynJeanCronceArmstrongTheguidelinefor communication,vialistening,totheseintelligenthuman ChronicLymeDiseaseneedtobechanged.Ihavebeen beingswholivewiththisdiseaseona24/7basis.Thank watchingmydaughterinlawandnowmy4yearold you.

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SaraConnorFoundingmemberofTHEIDSAHASANEW BOOK! ChronicLymedoesexist! SaraConnorWeshouldreadthisbook becauseweknowtheIDSAwon't. SaraConnorLet'sseeifforreal! SaraConnorIfourDoctorsfromILADSwroteanything whatthisbookissupposetobeabout, theywouldhavealotoftroublecomingtheirway. SaraConnorBurtonWaisbren,MD,FACP,FIDSAhas beenpracticingmedicineforover57years.Heisoneof theFoundingMembersoftheInfectiousDiseases SocietyofAmerica(IDSA)andhaspublishedresearchon LymediseaseinprestigiousjournalssuchasTheLancet. Dr.WaisbrenisanativeMilwaukeeanwhoreceivedhis B.S.andM.D.degreesfromtheUniversityofWisconsin MedicalSchoolinMadison,Wisconsin.Heservedhis internshipattheHarvardServiceatBostonCity Hospital.HismilitaryservicewasattheNavyMedical ResearchInstitute,Bethesda,Marylandandthe BiologicalWarfareCenter,CampDetrich,Maryland. Hisresidencyandfellowshipwasservedatthe UniversityofMinnesotaHospitalswherehewasan instructorinthemedicalschool.Hereceivedamaster's degreeinbacterialgeneticsfromtheUniversityof Minnesotain1951.HemovedtoMilwaukee,his hometown,in1951andestablishedaprivatepracticein internalmedicine,infectiousdiseaseandimmunology. Atthattime,healsoheadedtheinfectiousdisease controlunitattheMilwaukeeCountyHospital. From1951to1969,hewasthedirectorofthe infectiousdiseasedivisionoffirsttheMarquette MedicalSchoolandthentheMedicalCollegeof Wisconsin.Duringthattime,hewasappointed associateclinicalprofessorofmedicine.Hewasthe medicaldirectoroftheburncenteratSt.Mary's Hospitalfrom1962to1982.Hehasdirectedacancer immunotherapyclinicinMilwaukeesince1973.Hehas publishednumerousarticlesinthepeerreviewed medicalliteratureandhasauthoredbookson systematicmethodsofcriticalcareandonmedical emergencies. Dr.WaisbrenisboardcertifiedbytheAmericanBoard ofInternalMedicineandalsoisafellowoftheAmerican CollegeofPhysiciansandtheInfectiousDiseaseSociety

ofAmerica.HeisafoundingmemberoftheInfectious DiseaseSocietyofAmerica,theAmericanBurn Association,andtheCriticalCareSocietyofAmerica. CathieSmithWeareallsufferingfromsimilar symptomsafterbeingbittenbyatick.Weneedtobe abletoworkwithinfectiousdieasespecialistswhohave anopenmindinordertosortthisout.Weareinagony withverylittlehelpandweandourfamiliesare affectedgreatly.Wearepalliativeuntilyouarewilling toworkwiththispopulation. JoleneOffenbeckerPleasereviewandchangeyour guidelinesforchronicLymedisease!Recognizethat chronicLymeexists.Considerbestpracticeandclinical studiestodeterminewhatisbestforthosewhosuffer withthisdisease,NOTtheinterestsofbigmoneyand pharmacology. KateScottIwouldliketoseetheIDSAreviewandrevise theguidelinesfortreatingLymeandChronicLyme Disease.It'stimetoputanendtotheignorance! TimLambTheIDSALymecommitteekickedoffone memberwhodisagreedwiththeconsensusonthe treatmentguidelinessotheycouldhaveaunanimous approvalandthechairresignedbuttheIDSAallowed this.Theelisa/westernblotscreeningdiagnosiswas institutedinaperiodwheretheCDCperceivedanover diagnosisandovertreatment.Nowwehaveunder diagnosiswheremedicalprofessionalsconsider symptomspsychosomaticanddon'tevenrunaWestern BlottoseeiftherehasbeenexposuretotheLyme bacteria. RachelGroomPleaserevisethemedicalguidelines definingtreatmentoptionsforLymeDisease.People aresufferingandneedthepracticalmedicalsupportof theIDSAandinsurancecompanieswhichhasbeen deniedtodate. LoganMcCullochHowabouteducatinglocalDocsthat LymeispresentALLacrosstheUS?Iwasinfectedina NationalParkinmystate.Butbecauseofthe ridiculouslynarrowCDCreportingguidelinesmycase won'tbereportedtotheCDC.MyfamilyDocmissedmy classicLymerash,andlaterwhenIsuggestedLyme(I wasbittenby20+deerticks)Igotthe"thereare virtuallynoconfirmedLymecasesinKY").Sothereisno waytogetparkofficialstowarnotherfamiliesvisiting thishugelypopularNPthattheyandtheirchildrenare atriskforLyme.Whyisitthateverystatecontiguousto

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ourshasproportionatelyFARmoreCDCconfirmed casesofLymethanKY.Obviouslyit'snotbeing considerednordiagnosedduetoIGNORANCE.Birds, deerandsmallanimalsseemtofreelycrossstatelines... HeirloomHourglassWhydon'tyoureadthiswrittenby oneofyourown?http://Lymebook.com/burton waisbrenchronicLymebookessays NewLymebookbyBurtonWaisbrenBUYITHERE TreatmentofChronicLymeDisease,withEssays Lymebook.com OrderyourcopyofInsightsintoLymeDisease TreatmentbyConnieStrasheim. KristenMeliMartinezYepyoucanpassitinutero,2 yearsaftertreatingthemotherwith3monthsof antibiotics.Andbloodtestsaren'talwaysaccurate.My 6montholddaughter'sbraintumorwaspositivefor theDNAoftheLymespirochete,butherbloodtests werenegative. KimDeSantisGoodwinyupmydaughterispositivetoo andIwassymptomfreedidn'tknowIhadanything wrongwithme.Herbloodtestcameoutnegativeurine testpositive.Thenafter5monthsoftreatmentfor monthsbloodtestpositive. MaryShafferIliveinsouthernMD,infamousLYME area.Numeroustickbites,onewitha'small'bullseye rash.Despiterepeatedrequests(withonset/worsening symptoms),myprimarycarephysicianneverwrotemy bloodtestsupforLymetests...fastforwardyearslater, finallygottheorderforLymetest..nosurpriseitwas positive.Severalweeksofanitbiotics,nochange... retested,another+test,primarycaredoctoldme"dont worryit'sjustLyme"...leftthatdoc,whohadbeenmy PCPforoveradecade...secondPCP,sawtestresults... NEITHERreportedmeashavinganinfectiousdisease! Thatdidn'thappenuntilanotheryearlater,afterI foundaphysicianthatknowswhatLYMEis....LYMEis grosslyUNDERREPORTED! KristenMeliMartinezAndsheneverwentcamping withusorwalkedinthewoodsshewasborninTXbutI wasinfectedtwoyearsbeforehandinCT:adequate treatmentcouldhavesavedherfromthis. LoriSampleMacGregorYourLymeDiseaseguidelines urgentlyneedchanging,somanypeoplearegoing throughhellbecausethey'vebeenmisdiagnosedor givenjustfourweeksofantibioticswhichwouldonly

treataveryearlyinfection.Doctorsareafraidtotreat aggressivelyforfearoflosingtheirlicensesandpatients aresufferinganddying.Pleasehelpus. StephanieVandagriffAfter2000comments,theonly responsewegetisabadletterdenyingallourclaims. Whatwillittaketogetanactually,genuineresponse fromyou.PicketingtheIDSAheadquarters? StephanieVandagriffEvendiscovermagazinevalidates us.http://discovermagazine.com//janfeb/ JenKleeAnupdateintheguidelinesonLymedisease. ThatwillacknowledgethatthepainandsufferingI've beengoingthroughforyearsisactuallyrealsoIcanget realtreatmentforit.I'vebeenoncontinuousantibiotic treatmentforoverayearnowanditISworking! DenyingthatchronicLymeexistsdoesn'tmakeallofus who'resufferinggoaway. PaulaGalloHere'sagoodoneforyouall. http://www.kettmann.com/Lyme/Save/Chronicle% %Ticked.mp http://www.kettmann.com/Lyme/Save/Chronicle% %Ticked.mp www.kettmann.com PeninahAnnwww.cureunknown.combysciencewriter, PamelaWeintraubwhenwillIDSAhelpus? BillyBatsonGiveusafairchance. RachelGereinPleasereviewyourcurrenttestingand diagnosingproceduresregardingLymediseasein Canada.Myfriendhasbeendiagnosedandis desperatelyill.Unfortunately,thehardestbattleforhim todateisnothavingaccesstotreatmentinCanada.Too toughtoevenimagine. WendyVogtJanuaryDiscovermagazinearticle "ChronicLymePatientsValidated".Youcannotignore thefacts. http://discovermagazine.com//janfeb/ ExpandPreview BrittanyGoffDearIDSA,pleasegooutsideandexpose yourselftoadeertickthatcarriesLymedisease.Don't treatyourselfforatleastmonths.Then,takeafew weeksofdoxyandreporttoushowyoufeel........ifyou haven'tkilledyourselfbythen.

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care.Inappropriateguidelinesgivethecompanya NIHResearchPortfolioOnlineReportingTools(RePORT) chancetodeny.Withwhatotherdiseaseaffectingthe RCDCProjectListingbyCategory brainwouldsuchablaseattitudeprevail? report.nih.gov AffiliatelinksofU.S.NationalInstitutesofHealth(NIH). HannahHollingsworth AngelWilliamsSpellwastolddaybefore http://discovermagazine.com/2012/janfeb/90 yesterday....thatbecauseiliveinNCthaticantreceive IVtherapyeventhoughihaveproofthatoralantibiotics LizKarkoffAnewstudyuncoveredbiomarkersfor isalittleharshonmytummy.....MYdocevensaidi Lymediseasesymptomsthatpersistevenaft... wouldbebetteroffonIVbutinsurancewontpayfor treatmentpastdaysbecauseofcost...buthowmuchis AmySchultzMilnesIt'shardtobelievethatafterallthis itgoingtocosttohaveanewstomach?orthe time,apersonwhowalksintoadoctor'sofficetoday treatmentstofixmystomach?.....andrespondingtothe withabullseyerash,may(ormaynot),walkoutwitha ACNEtreatmentofopenendeddoxytreatmentfor prescriptionfortwoweeksofantibioticsandmostlya zits.....butulimitus?iknowthreepeopleondoxyfor lifesentenceofdebilitatingpainandsuffering. acneandsaidtheirdoctortoldthemaslongasthey However,mostwon'tevenbethat"lucky"andwillgo haveacne...theycanbeon undiagnosedforyearsasa DianneVogt ....TherearePLENTYof doxy....WHAT?...andutellus resultofyourantiquated intelligent doctors who disagree with daysandweshouldbe "guidelines".Testingis healed?....imsickofliars unreliableandyour yourantiquatedguidelinesandtheyare causecommonsensewilltell beingignoredjustthepatientswhothey guidelinesdon'tcureLyme andcoinfectionsas youthatisntright...andyou areunabletotreateffectively. evidencedbyallthepeople liewhenusayuhaveno whohavepostedhereand interestinwhatyouare suffereverydayoftheirlives. denyingus....ABLINDMAN Labtestsareunreliableandalarge Thesadthingisthatyou COULDSEEYOUHAVE majorityofpeoplewithadiagnosisof knowallofthis.Howcan FINACIALINTEREST..... fibromyalgia, chronic fatigue syndrome, yoursocietycontinueto ScottReedInthelast30 MS,andmanyothersimilarmisdiagnoses ignorethisanylonger?It's years,bloodtransfusions actuallyhaveLymeDiseasebuttheydon't alsohardtobelievethat testingandtreatmenttoday causedatleast159casesof knowitsothey'renotgettingthe isthesameasithasbeenfor babesiosis...Seefullarticle treatmenttheyneedrightfromthe decades,noadvancesfrom fromCDCreportat "theexperts"? beginning. JenniferMcNeillWallaceWe arenotlookingforastatementfromyou...wewanta http://discovermagazine.com//janfeb/ PLANOFACTIONnow!ThelasttimeIchecked,I knew...letmesee...ZEROpeoplewithtuberculosis!I GretchenAhlersOnefactorindecidinguponIVtherapy vsoralantibioticshastodowiththelevelof haveatleast20inmyneighborhoodalonewithLyme disease.WeareinfestedwithtickshereinNorth penetrationintothebrain.Oralsarenotaseffectivein Carolina.Therearesomanynewtickbiteseveryspring, doingthat.Iftheinfectionisinthebrain,itwouldseem summerandfallhere...andeveninthewinter. tobegoodpracticetopenetratethebrainasfullyas possible.LymeTimeshasanoldarticlemakingthecase EverywhereIgo,Imeetsomeonewhohasalovedone toinsurancecompaniesregardingIVRocephinfor orknowssomeoneaffectedbyLymediseaseorhasthe neurologicalLyme.Thismayseemlikeaconversation diseasehim/herself.Evenmydermatologistand betweenuswhohaveLyme,butthetopicsthatare cardiologistinRaleigh,NCagreewithmyLymeDr.and raisedherearegermanetotheissueofguidelines. whatheisdoingtogetmewellprescribinglongterm Again,theinsurancecompanybydefinitionissupposed antibiotics.Theysaythey'veseenotherpatientswho torefertoanappropriatespecialistandrenderthe havebeensavedbylongtermantibiotics. extentoftreatmentnecessary.Thatiswhywepay Arecurringthemehere(medical/clinicalevidence) insurance....incasewegetsickandneedcostlymedical wouldbethatlongtermantibioticsareworking!And

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sinceyouallarenotdoinganythingnewtofindabetter cure,wehavetotakewhatisavailabletoustoget better(ifweareluckyenoughtogettreatment).Ihave nothingbutsupportfrommycardiologist, dermatologist,pediatrician,primarycarephysicianand otherdoctorsI'vemetintheERandalongthisawful journey.Theytellmetheyareseeingmoreandmore peopledevastatedbyLymediseasehereinNorth Carolina.Andguesswhat?Theyareallabsolutely dumbfoundedbythelackofinterest,support,and researchbytheinfectiousdiseasesdoctors,esp.since thisisyourspeciality! Mycardiologistsaidtome"oneofmypatientscannot receivetreatmenthereinNCandsheissosickandyou arehavingtogooutofstate.Whatintheworldisgoing on?"Mydermatologistprobablyknowsmoreabout babesiosisthanyoudo!Heisalsoaprofessoratavery reputablecollegehereandisteachinghisstudents aboutit!HesaidIhavearashonmybodythatis consistentwithabartonellainfection.Heisa dermatologist...notaninfectiousdiseasespecialist!He said"Iamseeingmoreandmoreacquirethisdisease righthereonourgolfcourses."Doyouknowanything atallaboutthemultitudeofcoinfectionsthatyoucan acquirewithatickbite?Whataboutallthevirusesthat takeoverourbodieswhenourimmunesystemsshut down?Haveyouresearchedanythingatall?Youare beingleftinthedustbydoctorswhoactuallycareto knowmoreandwanttolearn,help,anddiscover.We wantmorefromyouthanaoneparagraphstatement. Wearesickanddying!Yourresponsewas unacceptable. WrblrFvtwlvIDSAwhatapatheticresponse.TheLyme Reviewpanelwasunbiasedreally?Chairedbyanex president,winnerofaspecialaward,whosaidstraight outduringthereviewthatherandfellowpanel membersdon'tliketheinterferenceofpoliticians, basicallythumbinghernoseatBlumenthal."Doctors" SteereandWormserhowwouldtheybenefitfrom treatingwithlongtermAbx?SteeretoldSen.Kennedy heneversawanylongtermneurologicalcases;during thepanelreview,itwassaidtheseonlyexistinEurope.

WhatareallthoseproteinsUMDNJfoundinthespinal fluiddoing,havingadiscodance? MelissaJasonTheIDSAdeletedandBLOCKEDBrittany fromthiswebsite.youcowards!!!! DaveBassettIwouldlikeeverymembertogetbitten byatick. MiJinNamLiuReviseyourguidelinesre:Lyme.Too manypeopleareneedlesslysuffering.Whatifitwere yourchild,mother,spouseorlovedonesuffering? MichelleNewellFDAapprovesbillthatderegulates antibioticuseinanimalfeedandtheIDSAisafraidthat humanuseofantibioticswillleadtosuperbugs? http://www.guardian.co.uk/world//dec//fdauturn antibioticsanimalfeed MichelleNewellComeonIDSA,wearesickanddieing ofLymediseaseandthereisnoproofthatwaitingto findtheautoimmunefunctionofLymediseaseinorder foravalidtreatmenttobecreated.Look,wearesick andit'ssickthattheseguidelineslimitdoctorsabilityto usesoundscientificdata,onwhatwedoknow,totreat theirpatients.ListentoILADSandothervalidresearch andcreateguidelinesthatactuallyhelppeople. CourtneyLynnIdontknowhowanyoneyousleepat night! CourtneyLynnAnyofyou*...frigginLymebrain..ughi hateyouIDSA! PeggiMauneyMyfriend'smotherdiedfrom complicationsofatickbite.Mustmysondie,too?Must I,atnearly70yearsold,gobrokefromspendingthe moneyforthelongtriptoseeadoctor,doctor'sfees, labexpenses,andmedicine?MustItakemysonto Mexicofortreatment?WHYdoIhavetospendthe money?Becauseheisyoungwithafamilytosupport, andheisoftentoosicktogotowork!Iwanthimtobe abletoseehischildren,now4and6,growup.

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Doctorsdon'twanttolosetheirlicensessothey're DianneVogtCHANGEtoLymeDiseaseguidelines: forcedtowatchtheirLymepatientssuffer.Iamoneof Millionsofpeoplemearesufferingfromthisdisease thosepatientsandIwantmylifeback! andwe'rebecomingdisabled,treatedlikewe'recrazy, andignoredbythe Kenneth Poindexter . . . . Most MDs governmentagenciesthat Iwanttobeabletowatchmy dontknowthatborreliaproducealarge createtheguidelinesfor grandchildrengrowupandI treatment. wanttohavethestrengthto varietyoftoxicbacteriallipoproteins drivetovisitthem. (BLPs)andtheyarentfamiliarwiththe ChronicLymeDiseaseexists, waytheseBLPscausedisease.Lyme it'snotallinourheads,we're Idon'twanttobeonSS diseasespecialistsmustuseverykeen notcrazy,entirefamiliesare DisabilitybecauseI'mbroke infectedthroughpregnancy, andIhadtogiveuponmy clinicaljudgmentwhendiagnosingcases sexualtransmission, pursuitofacollegedegree of Lyme disease. In defense of the breastfeeding,etc. whenIgottoosickto ignorantphysicians,muchblamecanrest continuemyclasses. TherearePLENTYof onhealthofficialsandthemedical intelligentdoctorswho IfIhadgottenacorrect establishmentsthatarenotgiving disagreewithyour diagnosisofLymeDisease, clinicians the appropriate information antiquatedguidelinesand alongwithpropertreatment, theyneedtodiagnosethesedifficult theyarebeingignoredjust in2003,Iwouldnowhavea likethepatientswhotheyare casesofLymedisease.Thecriteriabeing collegedegreeandagood unabletotreateffectively. usedtoreportLymediseasebyphysicians payingjob. isoftensetbystatehealthofficialsandis Thistravestyispartofthe Labtestsareunreliableanda oftenbasedupontherigidcriteria largemajorityofpeoplewith reasonwhyourSocial Security systemisgoing adiagnosisoffibromyalgia, establishedbytheCentersforDisease broke! chronicfatiguesyndrome, ControlandPrevention(CDC). MS,andmanyothersimilar Wedon'twanttobesick.Wewantyoutoopenyour misdiagnosesactuallyhaveLymeDiseasebuttheydon't eyestothissubjectandmakethenecessarychangesto knowitsothey'renotgettingthetreatmenttheyneed thetreatmentofLymeDiseasepatients. rightfromthebeginning. We,asagroupofphysicallydisabledpeople,ofallages, NotallLymeDiseasesuffererseverseeabullseyerash andallpartsofthecountryandtheworld,aresuffering orhaveanyothersymptomssotheydon'talways needlessly. becomeillatfirst.Itmaytakesomething,pregnancy, stress,orsomeotherjolttotheirsystemfortheactual Lymesymptomstoshowup. Iknowyou'vealreadyseenallthefacebookpostson thissubjectandyourresponseisUNACCEPTABLE! Thentheygoforyears,fromdoctortodoctor,tryingto Wedeserverespect,recognition,andmostofall, findoutwhatiswrongwiththem.Thereareonlya CHANGE! handfuloflabsinthiscountrythatdoaccuratetesting fortickbournediseasesandmostofthemarenot DidImakemyselfclear? coveredbyinsurance. WENEEDCHANGE!!!! Thoseofuswhohavedoneourresearchandknowwe haveCHRONICLymeDiseasecannotgetproper Stopignoringus,dowhatyouKNOWisright,listento thedoctorswhoaresodesperatelytryingtogetthese treatmentforourillnessduetoblockedtreatment changesmadetothegovernmentLymeguidelines. guidelinesthatdesperatelyneedtobechanged. Then,ANDONLYTHEN,wewillstoppushingfor CHANGE. IamanintelligentpersonwhoisFRUSTRATEDand dependentonnarcoticpainmedicationsbecausethatis DeborahViaDixonyoudeletedmypost?Howdare theonlytreatmentI'mallowedtoreceivebymydoctor you!YouwillseethattheLymecommunitywillnotbe duetoyourguidelines.

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quiet.Iseearevoltinthenearfuture.Thechanges mustbemade.It'sthehumanethingtodo. JasonHarringtonIreadtheresponsefromDianaOlson backtotheLymeDiseases.orgquestiononwhatthey thinkaboutallofthecommentsabouttheguidelines beingposted.AndIalsobelievethattherecentreview oftheguidelineswasnotreallyclosetoanindependent panelofmedicalexpertise.Itwouldbeindependentif therewerenewpeopledoingthereview,notnearlythe samewhodraftedthefirstsetofguidelines.Thecurrent setofguidelinesappeartobebiasedtoprotecting medicalinsuranceprovidersandstoppingdoctorswho areonthefrontlinesfightingthisgrowingissuefrom beingabletouseallthe"tools"tohelppeoplerecover somewhattheylife.Trynottobetheblockaidto treatmentandresearchorthepuppetofcorporations. CarlTuttlePleaseviewtheletterbelowsenttoHealth andHumanServicesSecretary,KathleenSebelius: December6,2011 TheU.S.DepartmentofHealthandHumanServices 200IndependenceAvenue,S.W. Washington,D.C.20201 Attn:SecretaryKathleenG.Sebelius DearSecretarySebelius, Imeanttoincludereferencestothestudiesthathave proventheLymeELISAtestunreliable.Herearethree referencesbelowandanattachedpageofstudies presentedtotheNewHampshireDepartmentofHealth asafollowuptoourLymeDiscussionMeeting,Aug 18th. http://home.comcast.net/~runagain/Dept%of%Health% Agenda.pdf 1.AtwoyearstudyoutofJohnsHopkinsconcluded thesetestswerelessthat50%accurate.Ascreening testbydefinitionshouldbe95%reliableandwerenot evenclosetothatnumber. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC/ 2.TheCollegeofAmericanPathologistsfoundthatthe ELISAtestsdonothaveadequatesensitivitytobeused asascreeningtestforLymedisease.Intwoblinded studiesthattestedlaboratoriesaccuracy,theELISA failedmiserably.InthelateststudybytheCollegeof AmericanPathologists,516labsweretested.The overallresult:55%inaccurate!(Bakken1997).

3.Lymediseaseresearcherandphysician,Dr.Sam DontaofBostonUniversityMedicalCenterreported that52%ofpatientsarenegativebytheELISA,but positivethroughtheWesternBlot.(Donta,2002). Becauseofthis,thebestantibodytesttousefor diagnosisistheWesternBlot 4.PleaseseetheattachedWorddocumentfor additionalstudies. PertheLymediscussioninAugustourfaultytwotier LymetestalgorithmhascausedgreatharmtoUS citizensandcontinuestodoso.TheCDCisactingasan autonomousgroupwhereitsauthorityisabsoluteand cannotbechallenged.Theyansweronlytothemselves. Weareexperiencingthedevastatingeffectsofdenial whilethefederalgovernmentchoosestodenytheLyme epidemicexists.Ifitistocontinue,thentheauthorities willhavetocomeupwithsomerationalexplanationsto explainthisirrationalbehavior. Sincerely, CarlTuttle Hudson,NH03051 Website:NewHampshireLymeMisdiagnosis Petitionsite: http://www.change.org/petitions/subjective symptomsaftertreatmentofLymedisease PhyllisShawThisisfromanewpostonLymenet,the premiersourceforILADStreatmentinformation& guidelines. KennethPoindexterPhysiciansfrequentlyoverlook casesofLymediseasesimplybecausetheydontknow thecomplexpathogenesisofthedisease.Theydont understandthatLymediseasecauseswellover100 differentsymptoms;thecommonarthralgia(the medicaltermforjointpain)isaLDsymptomthatmost physiciansarefamiliarwith;however,itisonlyoneof manysymptomscausedbyLymedisease. TheclinicalpresentationofLymediseasecanbevery subtleandcomplex.Mostdoctorsdontknowthat laboratorytestsareoftenuselessandmisleading. Resultsarefrequentlynegativeorinconclusivein individualswithborreliosis.Thetechnologywehaveto dealwithborreliaspeciesisinneedofsignificant improvement.Theisolationandidentificationof borreliaisrarelysuccessful;andnoclinicallaboratory testexiststhatcandefinitivelydiagnoseLymedisease.

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ThisiswhyadiagnosisofLymediseaseisheavilybased uponclinicalinformationsuchashistory,symptoms, andresponsetotherapy. ThereisanarttomedicinewhendealingwithLyme disease.Lymeexperiencedphysiciansmustusekeen clinicalskillsandjudgmentwhendealingwithsuspect Lymediseasepatients.Theythoroughlyevaluatethe patientshistoryandsymptomswhenseekinga diagnosisandareabletorecognizeeventhesubtle symptomsofcomplexLymecases.Mostphysicians dontrecognizethesymptomsofchronicLymedisease andwillrelysolelyonlaboratoryteststoconfirma diagnosis.Frequentlytheselabtestsarenegativeand misleadthephysicianandpatienttosearchforanother cause. MostMDsdontknowthatborreliaproducealarge varietyoftoxicbacteriallipoproteins(BLPs)andthey arentfamiliarwiththewaytheseBLPscausedisease. Lymediseasespecialistsmustuseverykeenclinical judgmentwhendiagnosingcasesofLymedisease.In defenseoftheignorantphysicians,muchblamecanrest onhealthofficialsandthemedicalestablishmentsthat arenotgivingclinicianstheappropriateinformation theyneedtodiagnosethesedifficultcasesofLyme disease.ThecriteriabeingusedtoreportLymedisease byphysiciansisoftensetbystatehealthofficialsandis oftenbasedupontherigidcriteriaestablishedbythe CentersforDiseaseControlandPrevention(CDC).This CDCcriteriawasestablishedforanepidemiological survey,whichwasdesignedtostudythedistributionof Lymedisease.ThetwostepmethodoftheCDCusesa screeningimmunoassayforallpatientsfollowedbya moresensitiveandspecificWesternblotonlyifthe screeningtestwaspositive.Unfortunately,this approachwasoriginallyintendedforsurveillanceof Lymediseaseinpotentiallyasymptomaticpatients,not fordiagnosticpurposesinpatientswithsymptomsthat arepotentiallyrelatedtoLymedisease. Thiscriteriawasnotintendedtobeusedasastandard fortheclinicaldiagnosisofLymedisease;theCDChas clearlystatedthis.Unfortunately,ignoranthealth officialsandphysicianscontinuetousethesecriteriafor theclinicaldiagnosisofLymedisease. KennethPoindexter https://www.facebook.com/note.php?note_id= MyLymeStory Lymediseaseisverymisunderstood.Thereissomuch controversysurroundingi...

By:KennethPoindexter JeannineComtoisBennettPlease,pleaserewriteyour guidelinesandconsultwithILADSDoctorswhoare actuallyoutthereinthetrenchesworkingwithLyme patientsandgettingresults. BrianSilva http://www.Lymedisease.org/news/touchedbyLyme/ids aresponse.htmlIlivedonourdairyfarmforover20 yearsandcanclearlyrecognizewhatdropsoutfrom underthebull'stail.Theabovelinkbroughtbacksome memoriesofthosedays./;^>b,!Bb LauraDeCosteOksoletmegetthisstraight.According toidsa,thereisnosuchthingaschronicLymedisease. YetifLymeisleftuntreated,itcouldbefatal.Uhmmmm DUH!Umedicaldoc'srsosmart.Tellme,does1+1still equal2? CatherineCollinsFromastudypublishedtwodaysago byEmbers,Bartholdetal,seemsmonkeysshow persistantinfection!"PersistanceofBorreliaburgdorferi inRhesusMacaquesfollowingAntibioticTreatmentof DisseminatedInfection" http://www.plosone.org/article/info:doi/./journal.pone LizKarkoffIhaveitongoodauthoritythat2individual IDSAmembersaresendingtheirfamilymembersto ILADSdoctorsforLymetreatment,whyisthat?IfIDSA doctorsthinkthattheirLymeguidelinesaresogreat, whygotoanILADSdoctorwhodisagreeswiththose saidguidelines? KaraMorganIwouldtoseemyselfhaveavery comfortabledaywithoutbeinginpainbecauseofyour Lymeguidlines.Iwouldlikeacure.Youdon'twantusto takelongtermantibioticsthanweneedacure,money todotestingandthereofcourseisabetterwaythan longtermantibioticsbutthatisallwecanfighttoget becausewearefightingalonewithourLymedr's.All becauseofafewignornantmoneyhungrygreedymen. Youkillpeopleformoney.Youwillbelookingupnot downwhenitisyourtime.Pureevil KennethPoindexterIwasoriginallydiagnosedwith LymediseaseinNovemberof2008,onlyafterayearof dailymigraineheadaches,jointpain,musclepain,brain fog,memoryloss,sleepissues,bloodpressure irregulation,fevers,chills,anxiety.Priorto2007,Iwas relativelyok,withlotsofinflamationthatwent undiagnosedforatotalof13years.

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NooneeverevenconsideredLymedisease.Ihavehad severalLymetestsdone,allofwhichhascomeout showingsomethingdifferent.SometimesI'mpositive, sometimesI'mnegative. IhaveEhrlichiosisandBartonellatoo.Unfortunately, evenwithtreatment,myEhrlichiosistitersjustgoup, THATSRIGHT,UP. Iwastreatedforayear,madeittoremissionandthen relapsedagainin2010.Mysymptomshavebeen exponentiallyworsethanbefore. IfIhadbeendiagnosedin1994whenIoriginally startedhavingsymptoms,allofthiscouldhavebeen avoided. SubLymeContenderimsorry...imgoingtohaveto laugh....inyourresponsesyouaredemandingrespect insayingnofoullanguageorcallingnames....butyou wontrespectus?wehavetobeniceandplaypretty whereyouareconcerned...butpeoplearesufferingand dyingandwatchingtheirchildrensufferandmothers andfatherssuffer.....siblings...grandmothers grandfathers.....andwatchourlifeslipawayalongwith ourdreams...andnotevengivenachancetoovercome thisdisease.....andyouaredemandingrespect?....im sorry...youfirstfaultsisthinkingyouareGods...andto sitonyourthronesandtellusHowtosuffer?.....thatsits allinourheads?...anddontcareaboutyourloved ones...theyarecrazytoo?....andpleasedontmakeus laughthatuactuallyhadalifetolive?....USIDSAare increasingthesurpluspopulation.....sorry,youarejusta casualtyofwar..... StephanieVandagriffMoreevidencethatLymeis persistant. http://www.plosone.org/article/info:doi/./journal.pone SonyaNelsonWhataboutthisstudy? http://www.plosone.org/article/info%Adoi%F.%Fjourna l.pone. PLoSONE:PersistenceofBorreliaburgdorferiinRhesus MacaquesfollowingAntibioticTreatmentofD www.plosone.org PLoSONE:aninclusive,peerreviewed,openaccess resourcefromthePUBLICLIBR... MaryShafferWeshouldhavearally@theIDSA.

CariIncedec.of1990,wehadourfirstchild.iwasthe happiestieverwasinmylife;soinlovewithmynew daughter,soinlovewithmyhusband.wehadsucha brightfutureaheadofus.ourdaughterseemedtodo everythingearly.atmosshewasabletositupandplay withherhandsfree.shewasstartingtotalk.(ireadto herpracticallyfrombirth.)shehadalittleboardbook withpicturesofanimalsinit.herfirstwordwas"cat". shewasveryamusedwithourfluffyhimalayancat. quicklyfollowedby"mama"then"dada"thenfollowed bymanymorewordswhenshewasjustmosold,we tookatriptoNantucketIsland.iwasfeelingsohealthy andhappywhenwefirstarrived.thenthisitchyrash appeared;round,withadarkpinkborderandadark spotinthecenter.ijustwroteitoffasaharmlessinsect bite. IsaiahGoodwinSofor7yearsIhavesufferedeveryday, lostajob,watchedmywifesufferfor6yearsandnow mydaughterfor4yearsfromCHRONICLYMEDISEASE... Wehavelearnedsomuchaboutthisdiseasethatwould lovetodebatethisissuebecauseall2000+people wouldwinthisdebate.Wehavelivedthepain,the depression,thefeelingofwantingtocrawloutofyour ownskinanditnevergoesawayit'salwaysthereinone formoranother.LymeDiseasetakesawayyour personalityandyoulongerenjoylife.Itisbasically puttingpeopleinjailwhileinseverepainandnot helpingthembutstillwithbillsandkidsand responsibility.It'sworsethanjailandworsethandeath. Thereisnodebateonifthisisrealornotrealit's happenednowtomanypeoplesobeforetheentire worldfindsoutyoualldidthisformoneyyoushould changeyourguidelinesandlookforacuretosavelives. Wehavealllostenoughtimeandmoneybecauseof yoursmallIDSAbioweaponcoverup.Thesadpartisof courseyouguysknowthisisabacteriaman(scientist) changedintoaformthatwilltrickthehumanimmune systemtonotcomeoutonbloodtest,toattackour ownbodiesandtobeveryhardtotreat.Ifyoudidany researchonthisorspoketopeople,Lymedr'sand learnedwhatIhaveyouwouldknowhowmanylives youkilled,ruinedandrippedapart.Imagineyour innocentchildinpaineverydaymissingoutontheirlife. Becauseofmoneyforsomegreedypeople.Thisis murderandyourkillingpeopleslowlyandit'storture andeverydayisastruggle.Wearealltellinghundreds ofpeopleandcontactingourpoliticiansandmediaand soontherewillbenorunningfromthetruth.Thereare studiesyoujustchoosenottocountthem.Youpickthe onestudydonebetween2peoplewithlymethatwern't

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http://ngm.nationalgeographic.com/2011/11/iceman evenonantibioticsthatareusedinmostwithlymeand autopsy/halltext thatisyourstudyfortheguidelines.Thatiswhatmakes mesomad.Toknowhowmanyarewalkingaround "Perhapsmostsurprising, withpaineverydaywhodon't Jo Smith Since you asked... Personally, I researchersfoundthe knowtheyareevensickmakes geneticfootprintof mesick.Somanywhodiedand wouldliketoseeyourorganization thecauseofdeathwasMSor disbanded.Youkeeppersecutingdoctors bacteriaknownas Borreliaburgdorferiinhis heartblockallbecausenobody whotrytohelpus,chronicLyme DNAmakingtheIceman foundthelyme.Ittookme10 sufferers.Youaredoingmoreharmthan theearliestknown Dr'sbeforemywifediagnosed mefromhundredsofhoursof good.Please,goaway.Preferably,before humaninfectedbythe bugthatcausesLyme researchandthengotmetoa wedie. disease." LLMDtestingpositiveforlyme, BartandBabesiayetmyElisaand KennethPoindexter WesternBlotinthelabwasnegativewithmyprimary care.Ihadeverysymptomoflymeandthetopdr's http://www.youtube.com/watch?v=eEE6aUjEHJY&featu don'tknowitseemsalittleweirdtomethattheyaren't re=youtube_gdata_player madetoplaydumb.Iknowpeoplearebenefitingfrom thishorriblediseasePharmaCompanies,FDA,CDC, Wewon'tbesilensedanymore.Wewillbehereuntil IDSAandgodknowswhoelse.Thisisallaboutmoney youactonyourownmissionstatement. andourlivesruinedforit.It'stimeforsomeoneto ExpandPreview standupanddotherightthingandstopmurderering people. KennethPoindexter http://www.youtube.com/watch?v=vNtpty2WCo0&feat IsaiahGoodwinalsothesestudiesaboveshowproofof ure=youtube_gdata_player chroniclymeyetthewaythebioweaponwasmadein worldwar2wasforthehumanimmunesystemnotfor Justincaseyouhaven'tseenthedocumentaryordon't theanimal.Animalscanhandlethisillnessandbe knowthefacts.ThefullfeatureisavailableonNetflix. treatedsomucheasiersowhateveratestshowsinarat oranynonhumanisgoingtobesomuchbetterthanin JoSmithSinceyouasked...Personally,Iwouldliketo seeyourorganizationdisbanded.Youkeeppersecuting humans.Sinceourimmunesystemisfooledbyitandso doctorswhotrytohelpus,chronicLymesufferers.You itattacksourownbodiesthiswasdesignedbyahuman aredoingmoreharmthangood.Please,goaway. scientisttomakethishappenonhumansanditis Preferably,beforewedie. alreadyknownthatmostanimalssuchascowsand horseshavelymediseaseapprox80%to90%.Theycan KennethPoindexterIwantonedaywithouthavingto tolerateitbetterthanwecanandIknowthisiswell knownbyanyonewhodoesanyresearchintothis resorttomorphinetocontrolmypain.Iwantoneday disease.Thisisacorrupthiddencoverupandweareall withoutamigraineheadache.Iwantonedaywithout goingtostandtogetherandmakeeveryoneknowthe forgettingwhatIwasdoing,Iwantonedaytobecured truth.Wedeserveproperhealthcarejustlikesomeone ofthishelltheIDSAhasplacedmeandthoseIlovein. wouldwantfortheircancerordiabetes.Changethe guidelinesandmakeitright. LynnOlsonTumaWhatIwantfromtheIDSAistosee moreofyourmembersembracethefactChronicLyme SarahJeanIsaiahI'mjustcurioushowyouexplainthe Diseaseisexistsandisseriouslyaffectingmillionsof factthattheautopsyoftheIceManRemainsshowed peoplearoundtheworld.Ialsoliketoseeareviewof thegeneticfootprintofLymediseaseinhisDNAifthis theguidelinesfordiagnosingandtreatingLymeDisease wascreatedduringWWII?I'mnotattacking,just sothatpeoplecangetthetreatmenttheyneedtoget well. curious.I'vedealtwithLyme,Babesia,andBartonella myself. DonnaZukaitisFalconeUndisclosedLymeNearlyKilled Here'salinktothearticlebyNationalGeographic: NCCancerResearcher

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http://www.wral.com/lifestyles/healthteam/story/8331 364/ CarlTuttleTheonlinepetitionagainsttheIDSA membersLymediseasestudyhasgathered315 signaturesfromacrosstheUS,Canada,Germany,UK, Ireland,Belgium,France,andtheNetherlands.Please takeamomenttoreadwhydoctors,nursesandLyme patientsaresigningthispetition. Therearenowsevenstateswhichhavepassed legislationtoprotectclinicianswhotreatlatestage Lymewithlongtermantibiotics(CT,RI,MA,MN,NY, NH,andTXwithPApending)andtherearesupport groupsinnearlyeverystatewithnineteenin Pennsylvaniaalone. IftheIDSAandCDCgotitrightwiththeironesizefits alltreatmentapproachforallstagesofLymedisease andfaultytwotiertestalgorithmwhythendowehave thismuchlegislationinvolvingLymedisease? Petitionsite: http://www.change.org/petitions/subjective symptomsaftertreatmentoflymedisease CarlTuttle Hudson,NH Website: http://home.comcast.net/~runagain/site/?%2Fhome%2 F January14at9:01amLike7 AndreaMarieGreeneLeuckIwouldlikeyoutoPLEASE CHANGEyourguidelinesandWORKwithILADSDoctors whoareactuallyoutthereworkingwithlymepatients andgettingresults. January14at9:40amLike9 PhyllisShawItseemstheIDSAisbeingprovenwrong again.Poordears.Cansomeonepleasepassthemawet towelsotheycangettheeggslopofftheirfaceagain? OnFridaythe13thhereisanewstudyprovidingmore proofthatspirochetesCANsurviveafterlongterm antibiotictreatment. Who'dthoughtthat? EmbersME,BartholdSW,BordaJT,BowersL,DoyleL, etal.(2012)

PersistenceofBorreliaburgdorferiinRhesusMacaques followingAntibioticTreatmentofDisseminated Infection. PLoSONE7(1):e29914. doi:10.1371/journal.pone.0029914 "Ourstudiesdohoweverofferproofoftheprinciple thatintactspirochetescanpersistinanincidentalhost comparabletohumans,followingantibiotictherapy. Additionally,ourexperimentsuncoverresidualantigen associatedwithinflammatoryfoci." Abstract ThepersistenceofsymptomsinLymediseasepatients followingantibiotictherapy,andtheircauses,continue tobeamatterofintensecontroversy.Thestudies presentedhereexploreantibioticefficacyusing nonhumanprimates. RhesusmacaqueswereinfectedwithB.burgdorferiand aportionreceivedaggressiveantibiotictherapy46 monthslater. Multiplemethodswereutilizedfordetectionofresidual organisms,includingthefeedingoflabrearedtickson monkeys(xenodiagnosis),culture,immunofluorescence andPCR. AntibodyresponsestotheB.burgdorferispecificC6 diagnosticpeptideweremeasuredlongitudinallyand declinedinalltreatedanimals. B.burgdorferiantigen,DNAandRNAweredetectedin thetissuesoftreatedanimals. Finally,smallnumbersofintactspirocheteswere recoveredbyxenodiagnosisfromtreatedmonkeys. TheseresultsdemonstratethatB.burgdorferican withstandantibiotictreatment,administeredpost dissemination,inaprimatehost. ThoughB.burgdorferiisnotknowntopossess resistancemechanismsandissusceptibletothe standardantibiotics(doxycycline,ceftriaxone)invitro,it appearstobecometolerantpostdisseminationinthe primatehost. Thisfindingraisesimportantquestionsaboutthe pathogenicityofantibiotictolerantpersistersand

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stewardshipalsoencompassmuchmore?Doesit whetherornottheycancontributetosymptomspost involveajudicioususeofthe"clout"anindividualor treatment. organizationofindividualshave? http://www.plosone.org/article/fetchArticle?articleURI Forexample,let'ssayIamawinsomeandattractive =info%3Adoi%2F10.1371%2Fjournal.pone.0029914%22 personwhohangsaroundtheschoolyardsmoking cigarettes?Thequestionis,amIstewardingthe CarolGauthierPleasestudyLymediseaseandits influenceImayhaveuponyoungkidswhomightdecide chronicform.Changethetreatmentguidelinesto Iamtobetheirrolemodel?Theanswerisobvious.I reflectthebodyofevidencemanydoctorshavebeen havenotjudiciouslystewardedmypersonalityand accumulatingwhiletreatingChronicLyme.Ihavethe attributesinawaythatpromotesthesuccessofothers, chronicformandfinditveryfrustratingthatIDSAhas infact,Ihaveactuallycreateda blindersoninregardtoall IsaiahGoodwin .....Thesadpartisof situationofleadingmany theevidencethat'sbeen documentedbythemany malleablemindsandbodiesto courseyouguysknowthisisabacteria doctorstreatingchronic detriment.Inthesameway,to man(scientist)changedintoaformthat Lyme.IDSAistreatingLyme havethepoweror"clout"to will trick the human immune system to diseasepatientslike defineandshapepolicies, notcomeoutonbloodtest,toattackour guidelinesandtreatment Fibromyalgiapatientsused tobetreatedthedoctors protocols,whilerefusing ownbodiesandtobeveryhardtotreat. saidtherewasnosuch investigationof Ifyoudidanyresearchonthisorspoketo further thing,therefore,it'sallin provocativeevidenceand people,Lymedr'sandlearnedwhatI thepatientshead!PLEASE testimonialswhichcontravene reconsidertheguidelines. currentstandardsiswhat haveyouwouldknowhowmanylives wouldbythisreasoning,be youkilled,ruinedandrippedapart. JeanHemondYouranswers categorizedasapoorsteward Imagineyourinnocentchildinpain onourcommentsabout indeed. everydaymissingoutontheirlife. yourLymediseaseguide linesareaninsulttopublic, KaetheMitchellWehavetwo patientsandcaringMDs kidswhoseliveshavebeen Becauseofmoneyforsomegreedy intelligenceandhonesty.It completelydemolishedby people. This is murder and your killing appearsmucheasierfor Lymeandconfectionsduetoa peopleslowlyandit'stortureand IDSAtobarricadebehind lackofadequatetesting,and selfproclaimedexpertise thissubstandardrestingis everydayisastruggle.Wearealltelling denyingallothersourcesof blessedbyIDSA.IfIwalkedinto hundredsofpeopleandcontactingour studiesanddatathatfor mydoctor's politicians and media and soon there will mostsustainchronicLyme. officetodayanddescribed everycommonlyseensymptom benorunningfromthetruth..... ofLymedisease,mydoctor WrblrFvtwlv wouldlookuptheIDSA guidelinesandordera"Lyme http://www.plosone.org/article/fetchArticle?articleYOU test",i.e.theELISA.Ifthatwerenegative,asisthecase RI=info%3Adoi%2F10.1371%2Fjoyournal.pone.0029914 inupto50%ofcases,Iwouldgoontodevelopalate stagedeeplyentrenchedconditionwherethebacteria movedintomybrainandspinalchord,joints,GItract, KarlaWilliams prettymucheverysystemofmybody,ashappenedto http://m.discovermagazine.com/2012/janfeb/90 mykids.Thesamethingwouldhappentomyneighbor ScientificproofChronicLymediseaseDoesExist downthestreet,thepersoninthenexttown,etc.until thousandsofpeoplewereextremelyill.Thisis,infact, GretchenAhlersWhenconsideringtheissueof happeningrightnow.Thisisallbecauseofantiquated stewardship,itisnecessarytohaveanunderstandingof IDSAguidelines.What'sitgoingtotaketochangethem whatoneisactuallyastewardof.Isitmerelytendinga thisyear,in2012?I'mgettingthecluethereare budgetintermsofjudiciousandfairdistributionof thousandsrespondingtothisquestionwhoknowthata moniesentrusted?Well,yes,partly,but,does

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PlumIsland,LymeDiseaseAndOperationPaperclipA changeintheIDSAguidelinesislongoverdue.What'sit DeadlyTriangle goingtotake,IDSA? www.rense.com DebbyMatthewsAllIcansayatthispointisthatthe LindaSlocumIwouldliketoseetheIDSAtakinga IDSAisajokeandabunchofcowardswhocannot realisticlookatthetreatmentofLymedisease,rather addressanyofthesequestionsandconcernsfromthe thantheusualwhitewashcreatedbythecurrentpanel peoplethattheyhaveasked"Whatwouldyouliketo whohasbeenconvictedofconflictofinterestinthis seefromyoursocietyinthecomingyear?"Nearly3000 matter.ManystudieshavecomeoutprovingthatLyme peoplehavecommentedhereandnothingfromthe isabsolutelynotcuredby10daysofDoxycycline,andin IDSAinresponse!Seriously...Youareawasteoftime& realitytakesmuchlongerto energyandhavedone nothingbutdeleteand LindaSlocum IwouldliketoseetheIDSA treatthaneven30daysonan IVmedicationsuchasRocephin blockpeoplewithareal taking a realistic look at the treatment of inmanycases.Itwouldbe disablingdiseaseandthat Lymedisease,ratherthantheusual greattoseetreatmentsbased justwantsome onactualmedicalresearchand answers....realanswersto whitewashcreatedbythecurrentpanel savetheirlivesandthelives whohasbeenconvictedofconflictof patientstudiesratherthanthe oflovedones...Heartless outdatedopinionsoftheIDSA interest in this matter. Many studies have CowardsandUseless!!!!! board. comeoutprovingthatLymeisabsolutely IhaveNOrespectforthe IDSAwhatsoeverandam KimDeSantisGoodwin notcuredby10daysofDoxycycline,and personallynotgoingto inrealitytakesmuchlongertotreatthan Remembereveryonecanleave wasteanymoreofmytime commentswithoutlikingtheir even30daysonanIVmedicationsuchas pageIknownobodywholefta orenergyoranybreathI haveleftbeatingthisdead commentlikestheIDSA.Please Rocephininmanycases.Itwouldbe unlike thepage. horse..Peoplewhosuffer greattoseetreatmentsbasedonactual fromthis"DEADLY"disease medicalresearchandpatientstudies KennethPoindexterItseems WILLfindthehelpthatthey thattheIDSAhasforgotten needfromrealdoctorswho ratherthantheoutdatedopinionsofthe theirownmissionstatement. havecompassionandthe IDSAboard. Hereitis,"IDSAspurposeisto KNOWLEDGEofLYME improvethehealthof DISEASEtohelpthem...Yes individuals,communities,andsocietybypromoting itisdifficult...ButsoisdealingwiththeIDSAwhohas excellenceinpatientcare,education,research,public NOcompassionorknowledgeapparentlyoftheREAL health,andpreventionrelatingtoinfectiousdiseases." sufferingandstrugglesofrealpeoplewithareal disease!ShameOnAllOfYou!YouWILLanswertoa Theyhaveutterlyfailedthismissionwhereitcomesto higherpowerandYouwilllose!SoDeletethispostand Lymediseaseanditsconfections. blockme...Idon'tcare!You'reUSELESS!Weareallon ourowninthislifeandwewillfindawaytosaveour MelissaJasonatleastweknowthattheyarereading lives...Withoutyour"help"....IDIOTS!I'mDonewithyou ourpostsconsideringtheykeepdeletingthem.... stooges!...... SarahJeanKimmyresponseabouttheIcemanmummy KimDeSantisGoodwinSarahjeanLymestartedin wasduetoanotherperson'scommenteludingtothe factthatLymeoriginatedfromPlumIsland EuropeandtheicemanhavingLyme.Inworldwar2the experimentation.MaybeIread/understooditwrong.It naziTraubisthecauseofLyme.Hereissomereading seemedtomethatthispersonwasclaimingthatLyme onthis.Itwasasimplebacteriachangedintoabio startedwithPlumIsland,butthereishardevidencethat weapon.HaventyouheartofPlumIslandandLyme Lymeexisted5,300+yearsago. disease? http://www.rense.com/general67/plumislandLyme.htm I'veheardofandreadaboutPlumIsland,butusually everyoneshouldreadthis. thepeopletalkingaboutitarefanaticalconspiracy

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theorists(Iknownotallofthemare).Iverymuch believethePlumIslandtheoryispossible. ManyofthePlumIslandclaimsareideas/theory, withoutadequatehardevidence,althoughalotofitis veryconvincing(andIverymuchunderstandthatthe governmentisnotgoingtoadmittobiowarfareand mistakesithasmade,especiallywithLyme experimentation). Thepeoplewhohosttheinformationonthelinkyou referredmetoevensay,"Wechoosenottocensor skewedlogicanduncomfortablerhetoric...Wepresent multiplefacts,perspectives,viewpoints,opinions, analyses,andinformation." Itisuptoustoconsiderallsides,justasweareasking theIDSAtodo.It'spossiblethatthereisamodified LymebacteriumcreatedbyexperimentationonPlum Island,andit'spossiblethattheoriginalLymebacteria andmodifiedbacteriacombined/evolvedtocreatenew varieties...It'spossiblethatthegovernmenthashelped toaccelerateadiseasethatwasalreadygoingto overtakepeopleanyway.It'salsopossiblethatthereare nogeneticallymodifiedLymebacteria,andit'sjust resourcefulenoughtoevolveintovariationsthat guaranteeitssurvival.Anythingispossible... PaulaGalloARifemachineineverycommunitytothe specificationofRoyalRifewillcurealotofthingslike cancerandTB.ITALSOCURESLYME.Allinthenameof theBigPharmachemicalsyousupport,Rifewasshut down http://www.youtube.com/watch?v=2yASljAG5Zo&featy oure=related KennethPoindexterWasLymecreatedatPlumIsland, probablynot.Manypeopledobelievethatitwas experimentedwithandultimatelyledtotheoutbreakin LymeConn.Idon'tknowthetruth,IdoknowthatLyme wentformillionsofyearswithoutsoclearlyinfectingso many. JoanRomeBallouLymeDiseaseGuidelineschangedto reflecttheTRUTH.Mydaughterhassufferedfor38 yearsfromChronicLyme.DOSOMETHINGNOWtohelp allthosewhoaresufferingbecauseofyouroutdated selfservingguidelines. MaureenTanguayHonestyisabeginning...........Lyme DiseaseIsSpreadByMites,Spiders,Mosquitoes,Fleas. ItIsAlsoSpreadViaALLBodyFluids

ByPatriciaDoyle,PhD 8311 HelloJeffWesaidthismanyyearsagoonyour programandhereitis.Lymediseasecanbetransmitted viacontactwithbodyfluids,suchasurine,tears,semen, Wediscussedthecontaminatedbloodspreadacouple ofmonthsago.Lymewastransmittedtopeoplewho hadbloodtransfusions.Also,thedeertickisnotthe onlymeansofspread,fellowarachnidthespider,biting flies,fleasandmitesarejustsomeoftheculpritsthat spreadLyme. So,reducingdeerpopulationsbyslaughteringthese magnificentanimalswilldonothingtoendLyme Diseasespread.Evenaddingtotheslaughterallbirds anddeermiceandsmallmammalswouldnothelpstop Lyme.Thatbiowargeniehasbeenoutofthebottlefor toomanygenerations,thankstoour"Plum"friends. PattyTreatingLymeDiseaseNaturally PostedbyDeliaQuigleyJul30,2011 Filedunder:AlternativeTherapies,Blogs,Diet& Nutrition,GeneralHealth,Health&Wellness,Natural Remedies,RejuvenateyourBodywithDeliaQuigley, antibiotics,HealingLyme,Lymedisease,spirochete Itmaybeginwithflulikesymptoms,headache,chills, andbodypains.Thatis,ifyou'reluckyenoughtoknow you'vebeenbittenbyaninfectedtick.However,some peoplewon'tknow,becauseLymediseasecanalsobe transmittedbycontactwithbodyfluidssuchasurine, tears,semen,contaminatedbloodandbreastmilk.Plus, itisnotonlyticksthatnowcarrytheLymespirochete, butalsomites,spiders,mosquitoes,fleasandbiting flies. Antibioticswhetheradministeredinaonemonth protocolortakenintravenouslyforseveralyears,has beentheonlywayallopathicmedicinehastreatedLyme disease.Formanythisformoftreatmenthas successfullyeliminatedthedebilitatingsymptoms,while forothersantibioticshaveonlyofferedshortterm relief.AccordingtoStephenHarrodBuhner,authorof HealingLyme,80percentofbloodtestsperformedto detectthepresenceofLymecomebacknegative.This, heclaims,isduetothespirochete'sabilitytohideinside cellsandbodytissuesratherthanbodyfluidsandblood, toquicklyarrangeitsgenestructureinordertohide fromantibioticsandfitintothehost'sbody,allwhile

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avoidingtheirimmunesystem.Inadditiontobacteria, LymetickscanalsotransmitBabesiaspecies,asmall protozoan,whichonlycomplicatesthediseasefurther. Thereareanumberofnaturalprotocols,usingherbs, dietandenergytreatmentsthathavehelpedmany peoplesufferingfromLymedisease.Somearelisted herenotasamedicalcure,butasalternative treatmentstohelpalleviateLymesymptoms.Itis difficulttosaywhatwillworkforonepersonandnot foranother,soitisrecommendedyouworkwithan experiencedhealthpractitionertodeterminetheright supplementsforyoutotake.Itisimportantto rememberthatherbsaremedicineandshouldbe treatedwithrespectastodosageanduseovertime.(1 of4parts) http://www.care2.com/greenliving/treatingLymes diseasenatyourally.html PatriciaA.DoyleDVM,PhDBusAdmin,Tropical AgriculturalEconomicsUnivofWestIndies Pleasevisitmy"EmergingDiseases"messageboardat: http://www.emergingdisease.org/phpbb/index.php Alsomynewwebsite:http://drpdoyle.tripod.com/Zhan leDevlesataisastimasaGowithGodandinGood Health BenjaminFranklinsaid,"Theythatcangiveupessential libertytoobtainalittletemporarysafetydeserve neitherlibertynorsafety." MainPage http://www.rense.com/ ThisSiteServedbyTheHostPros TreatingLymeDiseaseNaturally www.care2.com Itmaybeginwithflulikesymptoms,headache,chills, andbodypains.Thatis,ifyou'reluckyenoughtoknow you'vebeenbittenbyaninfectedtick.However,some peoplewon'tknow,becauseLymediseasecanalsobe transmittedbycontactwithbodyfluidssuchasurine, tears,semenandcontaminatedblood. AllieWetzelMorefundingforLymeresearch!Iwas misdiagnosedwithMSandLupusbeforefinallybeing [correctly]diagnosedwithLymedisease.Weneed betterdiagnosticsANDbettertreatmentplansforLyme Disease. In2010IcompetedintheCollegiateNationalTriathlon. Ihadhopedtoplaceinthetop,butbarelyfinished.The chronicfatigueIhadbeenexperiencingsince2006was

nowdebilitating.My4.0atUFwasdamagedbyclassesI barelypassedasmostdaysIcouldnotdragmyselfout ofbed.Iwashospitalizedafterashorttrackworkout andfoundmyselfunabletodoanythingmoreactive thanwalkingmydogs.Iwasforcedtocancelmy2010 FloridaIronmanEntryandwatchmybikescollectdust.I soughtmedicalopinionsandwasmisdiagnosedwith LupusandMSdiseasesIthoughtwouldendnotonlymy athleticcareer,butalsomylife.InMay2010,Dr.Kim KayeinGainesvilleFloridagavemethefirstglimmerof hopeshetold"YouhaveLymeDiseaseandIcanfix you".Shewasright,andafter9monthsonDoxycycline, Zofran,andTramadolIwasclearedtotrainagain.Iam nowcoachedbyTinaPicandamenteredinthe2012 FloridaIronman.November3rd2012,exactly2years afterbeingdiagnosedwithLyme,Iwilllineuponthe beach,shakingandscared,andIwillbecomean Ironman.Iamstillplaguedbyautoimmuneflaresand residualsymptoms,butthisisafightIwillneverlose. Pleasefindwaystoincreaseallaspectsofresearchon thisdisease.Startingacyclingortriathlonteamsimilar toTeamType1wouldbeagoodstart...Iwouldhelpin anywayIcould. HopeMcCoyThisisjustplainscary!Recently diagnosed! KarlaWilliamsYouarerightonMaureen...tellit! KarlaWilliamsHopeIwasDx'din2005,thatwasscary. Therewasnoinformation,norealsupport.Ithasspread likewildfireandiscomingtocriticalmass.Wehave blazedthetrailyouwillwalk,arefightingthebattles thatyouwillnothavetoo.However,educateyourself well,andprepare.Messagemeonmyfacebookfor moreinformation.ISDAareliarsandarepaidandkept bybigpharma,insuranceindustryandspecialinterest. ThatspecialinterestisNOTYOU! StephanieMartinezIwouldliketheLymeguidelinesto becorrected...Ihavebeennpainforalmostthree yrs...toldIhavemsetcandfometofindoutitsLyme....I couldbeenhavingtreatmentifyourguidelineswere correct... StephanieMichelleKealy "Morethanhalfofthe currentrecommendationsoftheIDSAarebasedon levelIIIevidenceonly.Untilmoredatafromwell designedcontrolledclinicaltrialsbecomeavailable, physiciansshouldremaincautiouswhenusingcurrent

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guidelinesasthesolesourceguidingpatientcare decisions." http://archinte.ama assn.org/cgi/content/abstract/171/1/18?etoc IDSA:Ourgoalistoensurethatpatientsaregiven treatmentthatissafe,effectiveandsupportedby scientificevidence." http://www.idsociety.org/Lyme_Review_Panel_News_R elease/ StephanieMichelleKealytheabovelinkspostedbyme werepostedbyawomanafewdaysago...her commentwasdeletedandshewasbannedfromfuture postingonthispage.Ifyouwantpeopletoknowthe truth,copyandpaste.CanIDSAblockeveryone? IsaiahGoodwinSarahJeantheotherpersonwasme andyouaretalkingtomywifeandIwastheother person.LymeDrsdobelievethatLymestartedlongago inEuropeandthenitwasmanmadechangedintothis sickform.AreyousomeonewhohasLymeorsomeone writingonbehalfoftheIDSA.Confusedwiththisandits offthepointofpeopledyingfromguidelines.Evenif thesmallchancethiswasjustabacteriathatformed intothiscomplexformweretrueattheendoftheday weareallsickbecauseoftheIDSA. PaulaGalloThiscantbeignoredanylonger.Fessup. Youareeitherwiththepeopleornot.Makeadecision. http://vimeo.com/34538925 SherriAndersonBecauseofIDSAGuidelines,my daughterhasbeenmisdiagnosedfor3years.Becauseof yourguidelines,weweretoldherbloodtestswere negativeandonlyinthepastmonthhavelearnedher WesternBlotswerealwaysreactivetoB.Burgdorferi SPECIFICantibodies.Becauseofyourguidelines,her illnesswasneveridentifiedortreatedbutallowedto progressandshenowsuffersfromNEUROBORRELIOSIS, identifiedNOTbyaLLMDbutbya"Lymeaware" neurologist.Becauseofyourguidelines,shehas developedanautonomicdisorderasaresultoflong termLymeinfection.Becauseofyourguidelines,sheis nolongeranactiveteenageathleteandhonorstudent, butmustrestinquietmuchofthedayduetoher painfulsymptoms,cannotsleepatnight,andcanno longerattendschool.ITISTIMETOCONSIDERALL EVIDENCEANDHELPPEOPLEWHOARESICK.THE GUIDELINESNEEDREVISING. DanielAndersonPerhapsitstimetochangethe guidelineswhen2,250peoplewouldaskyouto...but

thatwouldmakewaytomuchsensewouldn'tit?What ajokeofanorganization. LindaSlocumIwouldliketoseepropertestingfor Lyme,insteadofusingthehighlylimitedcriteriathat wasoriginallydesignedforsurveillancepurposesonly. IgnoringthemajorityofthebandssignificantforLymeis justplaincriminal,asitappearstobeadeliberate attempttoreducethereportableincidencesofLyme disease,andthusgivestheinsurancecompaniescarte blanchetodenythatLymeexists. SaraSchultzI'dliketheIDSAtoexplaintomewhyticks infectedwithLymediseaseinCanadaonlybitedogs ............andnotpeople? RobinKropTotalkyourwalk.Whenpushcomesto shove,youcallILADSLLMDs.Forexample,whenPres BushgotLyme,youcalledtwoILADSLLMDstoaskwhat todo. JoanRomeBallouMydaughterwasinfectedbyatick biteonSHELTERISLAND,NY.Around197980.Thisis whereBurgdorferobtainedtheticksheusedforhis initialresearchon"LymeDisease"beforeitevenhada name.Shehasbeensickeversince.Andyouthink ChronicLymedoesn'texist? LeslieFeinberg"Casualtyofanundeclaredwar"series LeslieFeinberg'spersonalresearchnotes onthemedicalpoliticsdrivingtheLymewars. http://www.transgenderwarrior.org/Lymeseries.html DeborahViaDixonOK,idlyyourpickingonmeby deletingmyposts.Ihavesaidnothingwrongtohave youdothis.BythispostIwillletyouknowthatIWILL NOTGOAWAY!Thegroupofsocallpeople(asIreally don'tknowhowtheycanbecalledpeopleasthey apparentlyhavenosouls)needstobebanishedfrom the"society"astheyclearlycannotseethattheir decisionsarewrong!Howmanypeopledoyouneedto beheardfrom?Howmanypeoplemustsuffer?How manypeoplemustlosetheirjobs,theirhomes,their savings,theirabilitytocareforthemselvesandothers? Howmanyfamilymembersmustwatchdailyastheir lovedonesuffer?Allbecauseofonepanelofself imposedGODS?Shameonyou MichelleBlyLadzenskiRecognizethat,forwhatever reason,Lymedoesn't"goaway"thefirsttimearoundin

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Aggressiveantibiotictherapycouldnotkillall somepatients.Afterrecognizingthat,youhavetobe willingtotreatpatientswithpersistingsymptoms. spirochetesinmonkeyswithdisseminatedLymedisease www.prohealth.com MelissaGriegelISDA:Youasked,weanswered.Now Inmonkeystreatedwithantibioticsafter68monthsof areyougoingtolistenandactuallydosomethingabout infection,enoughspiroc.....SeeMore it? KathrynRichardsandyes,infact,didcalllocalvetsto MelissaRascioMakesuretosignthispetitionas seeiftheywouldtreathumansandordereddoxyfrom well...967signaturessofar...urgeyourfamilymembers anonlinevetsupplystore.Prettypathetictothinkthis isAmerica.LearnedtorunmyownIVonyoutube tosign. finally.ThisisbeyondrepulsivetothinkthisisAmerica. http://www.change.org/petitions/reviseidsa guidelinesforLymedisease LoriKaciakNewsomechronicLymedisease...isslowly KathleenO'ConnellAquotebyMartinLutherKing. killingme.Ithasitsgriponmylifeandisslowlybut "Never,neverbeafraidtodowhat'sright,especiallyif surelysqueezingeveryounceofmyenergytopulp!I canbarelykeepmyeyesopentryingtotypethis.Please thewellbeingofapersonoranimalisatstake. helpus...... Society'spunishmentsaresmallcomparedtothe woundsweinflictonoursoulwhenwelooktheother AngelWilliamsSpellwellmyargumentisyouspendall way."........Icouldn'thelpbutthinkoftheIDSAafter thismoneytryingtoproveuswrongandtellingus readingthatquote.Theyhavemylifeintheirhands researchdoesntsupportwhatusLymiessay....butwe rightnow.Byomissionandlookingtheotherwaythey aretheonesonthefrontline.Ifyouwanttosave aredoingharmandsomeofuswillsuccumbtoLyme moneyandhealthcare,justlistentoustheoneswho DiseasebeforeTHEYdowhat'sright. aresuffering....ifyouwouldjustlisten...youcouldsave lives...moneyetc....WhenImonmydeathbed..Iwant SubLymeContenderALLofusLymiesareveryaware toknowthatImademymarkonthisworldinapositive thatyouIDSAdidnotinfectuswiththisdisease....and way...notthatImutilatedinnocentlivesjusttotryand wearenotblamingyouforusbeingsick......Butitstime provesomeonewrong...comeon....dosomethinggood toopentheguidelinestothepointthatALL withyourlife....youdont TREATMENTScanbe HannahHollingsworth Ihadtodropout wanttobeknownandthe availabletoallLymies ofschoolandtakealeaveofabsence moderndayHitlerdou?....Its accordingtothepatientsand thedocswhotreatus....so nothard....justtakeadeep fromworkbecauseIcannolonger therefore...Pleaseknowthat breath...admitwhereyouare understandsentences,forgetaboutthe weknowyoudidntinfect wrong...andsavesome factthatI'moperatingwithmoderate us...BUTGETTHEHELLOUT lives...justthinkofallthe prestige...YOUsaved OFTHEWAYSOWECAN paininmyknees,wrists,neck,andback, thousandsoflives....Iwould DEFEATTHISTHING...IM andconstantheadaches. muchratherbeknownfor TIREDOFBEINGTOLDHOWI thatifIwereinyourposition FEELBYSOMEONEWHO DONTEVENLIVEINTHESAMESTATEASMEORSAT DanielleMichaelHandyIwouldliketoseerecognition DOWNANDATEAMEALWITHME.....SOTHEREFOREIF YOUARENOTGOINGTOHELPUS....THENMOVEAND ofthefactthat68weeksofantibiotictherapyisnot LETUSTRUEFIGHTERSDOSOMETHINGWITHTHESE enoughtreatmentformanypeopleandifsymptoms INFECTIONS.....USLYMIESAREPROACTIVE...UNLIKEYOU stillexistafterthattimeIwouldliketoseeresearchas towhyandwhatiscausingitandhowcanitbetreated. ALL Iwouldliketoseeinfectiousdiseasedoctorsand primarycaredoctorsmoreeducatedinthemany KathrynRichardssotheyhaveprovenchronicLymein symptomsatickbitecanbe.Iwouldalsoliketosee monkeys!!!WhenwilltheIDSAcatchup? moreeducationandrecognitiononalltheother http://www.prohealth.com/library/showarticle.cfm?libi diseasesatickbitecantransmit. d=16759#.TxRikpXcKUc.facebook

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SarahJeanIsaiah,it'sallgood.IthinkIjust misunderstoodyourpreviouspost.Don'tworry,Iam NOTwritingonbehalfoftheIDSA.IdealtwithLyme, Babesia,andBartonellaformanyyears. KaetheMitchellHooray!JustreceivedmycopyofDr. BurtonA.WaisbrenSr.'s"TreatmentofChronicLyme DiseaseFiftyOneCaseReportsandEssaysinTheir Regard".http://www.amazon.com/TreatmentChronic LymeDiseaseFifty One/dp/0982513887/ref=sr_1_2?s=books&ie=UTF8&qi d=1326765209&sr=12 DeborahViaDixonhttp://whatisLyme.com/restin peace/*foodforthoughtIDSA* JenniferChristieIwouldliketoseesometestsand treatmentforBabesia.Over30deathsfromblood transfusionsandnoonehasanyanswers.Thisisa vectorborneillnessandpeoplearedyingfromit.Red Crosshasnoideawhattodo.IspokewithDr.Lieby himselfandheconfirmedmyfears. StephanieVandagriffWereallonthesamesideIsaiah andSarah. JenniferSchierholtForstarters,weneeddoctorsbrave andwiseenoughtomakereasonableclinicaldiagnoses ofLymebasedonpresentingevidence.Everyoneknows evenyourownexpertsadmitthatcurrentlyavailable testsforLymeareunreliable,sotheyshouldhardlybe consideredthegoldstandardfordiagnosis.48hours afterreturningfromatripinthebackcountry,my husbandwalkedintotheERwithtextbookperfect symptomsofLymeEMrash,fever,jointpain,etc.He wastoldhecouldn'tpossiblyhaveLymebecause"we don'thaveLymeinSouthernCalifornia."Bouncedfrom specialisttospecialistfortwoyears,he'sbeentoldhe mighthave:allergies,rheumatoidarthritis,delayed pressureUrticaria,TrigeminalNeuralgia,Chronic Fatigue,Denguefever...thelistgoeson.Hefinallyhas beendiagnosedwithLyme,butnowhehasswellingof thebrain,spinalcordandheart;visionandhearingloss; Papilledema;extremebonepain;extremechestpain; shortnessofbreathandcognitivedifficulties.All becausedoctorsignoredwhattheysawinfrontofthem andmadewildspeculationsinstead.Myhusbandhas losthishealth,hiscareerandpossiblyhislifebecause notonedoctorwaswillingtomakethemostreasonable diagnosisbasedonthephysicalevidence.Thisdidn't havetohappen.ItshouldNOThavehappened.

HollyKitchinRoesingLymeDiseaseRECOGNITION! NeedaLymeDoctorinSouthCarolina.Nobodybelieves initdownhere!! SteveHardisterLyme,whydidittakeayearand thousandsofdollars,and4doctors? SteveHardisterFinallygettingbetter,WITHNOHELP fromthemainstreamdoctors!!!!! MelissaJasonIsaywetakethisprotestevenbigger. Whydon'twequestionBushonhistreatmenthe receivedforLymeDisease?HeclaimsthathisLyme treatmentisclassifiedbutlatergavefulldetailsforthe procedureofhisColonsurgery...hmmmmm....... DeborahViaDixon http://discovermagazine.com/2012/janfeb/90check thisoutIDSA! HannahHollingsworthHere'ssomescientificproofof persistenceofBorelliaafterantibiotictreatment.It's notallinourheads. http://www.plosone.org/article/fetchArticle?articleYOU RI=info%3Adoi%2F10.1371%2Fjoyournal.pone.0029914 HannahHollingsworthIhadtodropoutofschooland takealeaveofabsencefromworkbecauseIcanno longerunderstandsentences,forgetaboutthefactthat I'moperatingwithmoderatepaininmyknees,wrists, neck,andback,andconstantheadaches. BrianCarissaDietzMyhusbandhasLymedisease.He hadaheartattackinAugustandwhileIamgratefulthat theUniversityhospitalsavedhislife,theyrefusedhis Lymetreatmentduringhisstayandinterrogatedhim dailyconcerningLymeDisease.TheInfectiousDisease Dr.thatfollowsyourguidelineswouldnotgivehimhis antibioticsandhisfeverwentupandhewashaving crushingchestpainandcouldnotbreathehis symptomswereignoredandhewasdischargedonlyto beflowntoanotherhospitalafewdayslaterwhere theyfoundbloodclotsinhislungs.IalsohaveLyme Disease/Mycoplasma.ItpresentsasMultipleSclerosis thatstartedwhenIwasachildanddiagnosedasthe classic'growingpains'. Ihavesufferedwiththismywholelifeandpassediton tomychildren.Youcannotimaginethepain,notonly thephysicalpainbuttheheartwrenchingpainwatching mychildrenandhusbandsuffer.Alsomydaughter,then 3yearoldwasbittenby4ticksina2weekperiodather

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daycare.HerPediatricianrefusedtotreatherbasedon yourguidelinesandunreliabletesting.Withinweeks shewasexperiencingdailyheadaches,fevers,swollen glands,sorethroat,backpain,worseningofjointpain andwhatshecalledsprinklingfeelinginherlegsandwe noticedadrasticchangeinherpersonality.The scientificproofisthere.Iamaskingyoutopleaserevise yourguidelines.Somanypeoplearesufferingfromthis disease. GretchenAhlersThisistrulyheartrendingtoread, especiallythepartaboutLymepatientsnotgettingsafe andindividualizedcareinhospitalsettings.Whereisthe moralleadershipinthisissue?Practitionerswhohave dealtwithhundredsofpatientswithLymeknowthat Lymecausesthebloodtoget"sludgy".Strokesand otherbloodclottingeventsareassociatedwithLyme,if notresearchconfirmed.ThesurgeonwhoplacestheIV portinLymepatientsknowsthisandactsjudiciously. Weagainfindtheglaringquestionofwhywouldthose doctorswho"own"therealmofinfectiousdiseasenot beinterestedinexaminingarealitythattheirpeersare wellawareof,andhandlewithcaution?Ifonedoesn't know,oneconscientiouslyconsultswithsomeonewho does.Butwhathappenswhenthephoneisdialedfor batmanandjokerpopsup? CeceliaCecePriceJonesIguessIwasdeleted!Well,tell meagainhowtheefxofLymecouldbeallinmyhead whenmyhandbecameparalyzedwithoutevidenceofa stroke?&majorblastsofRocephingotmyhandmoving again??? LayouraGalvan@sarajeanhowdidyougetbetter? LoriDitzlerHagarmanIwonderwhenoneofyouor someoneinyourownfamilieswillsufferfromthis disease?Nooneisimmuneandthenumbersare growing!!!! KathrynElyIwouldliketoseeachangeintheIDSA guidelinesforLymeDisease.Iwouldspecificallyliketo seeabalancedpanelfreeofspecialinterestsreview actualmedicalfactsthathavebeenpublishedinvarious journalsofmedicine/pubmed,listentopatients symptomsandTHENdraftanewsetofguidelines. Youmayormaynotbeawareofhowmany companies/organizationsuseyourguidelineslikethey werewrittenbygodhimself.TheSocialSecurity Administrationisoneexample.Iamunabletowalk withouttheaidofawalkerandeventhencanonlygo

distancesof100feet.Icannotsit,standorlayinone positionformorethan20minutes.Ihavelosttheuseof finemotorskills,experiencehaltedspeechpatterns, sufferfromseizuresdaily,experienceconsistentpainon alevel8outof10andcanhardlybathemuchlesswork. Thisisnot"theachesandpainsofeverydayliving".Iam clearlydisabled,butthankstoyourfaultyguidelinesI havebeendeniedSSDI/SSItwiceandamnowwaiting forahearingwithajudge. MeredithLodgeIwouldliketoseeabettertestfor Lymecoveredbyinsurance.Iliketestingforothertick borndiseasestobecoveredaswell.ThoughItested positiveCDCLymein2009,nodoctorranatestfor ErlichiosisuntilJan2012.Testedpositive.IDSA,Ithinkif youandILADScouldmeettogetheryouareallsosmart youcoulddogreatthingsfortheindividualswhoneed you,theAmericans,the.PopulationoftheAinIDSA BeckyDietscheIhaveknownnumerouspeoplewho havebeenmisdiagnosedwithotherillnesses,including myself,whentheyinfacthaveLyme'sDisease.Please changeguidelinesandhelppeoplefindtheanswers theyarelookingfor.IwasleadtobelieveIhadrestless legssyndromefortwoyearsbeforehavingan exacerbationandotherssymptomscomeon.Thereare somanycoinfectionsthataccompanyLyme'sDisease aswell.Countlessdollarsarespentgoingfromdoctorto doctorforanswers,morescreeningshouldbedoneand coveredinitiallysothattime,moneyandheartachecan beaverted.Thankyou. SusanCampbellChrisFinklehttp://www.patient experience.com/index.php/ccsviresearchandsuccess storiesmultiplesclerosisandLymedisease/ MelissaDempseyTheresearchaboutchronicLyme yieldsconflictingresults.Whenthathappens,itstimeto listentothepatients.Sohereweare.Maybeitstimeto droptheinsurancecompanypoliticsandstartlistening. Bytheway,Iloveitwhenyourdoctorsstatethings aboutthe"antibioticseekingbehavioroftheLyme patients."Incaseyou'veneverbeensick,taking antibioticsarenotajoyfulexperience.Theonlyreason toseekthemisifyouhaveanongoinginfection.Time tostartthinkingoutsideofyourlittlemedicalboxes. EranNilsRedickGovernmentcausedthisLyme outbreak,itescapedfromPlumbIslandbioweapon... whoopsie.Theyarehopingwealljustshutupanddie!

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Ourclinicalexperiencestronglysuggeststhat CarlTuttlePleasetakeamomenttoreadthefollowing predictable,possiblyinevitableLymediseasetransfer letteraddressedtotheNewHampshireDepartmentof betweensexuallyactivecouplesoccurs.The HealthandHumanServices. Jan21,2012 preponderanceofinfectedspouseswehavetestedto datealsoexhibitpositiveserologyorPCRforBBSL DeputyStateEpidemiologist presence. DivisionofPublicHealthServices DepartmentofHealthandHumanServices Substantialdatasupporttheprobabilitythathuman 29HazenDrive BBSLinfectioncanpersistindefinitely. Concord,NewHampshire03301 BBSLpresenceinhuman,othervertebratereservoirs orbothhavebeenreportedfromoverthirtycountries onsixcontinentsandseveralislands.TheZoonotic DearDrDionneOdom, modelwas,andremainsincomplete,andincludesonly aportionofallB.Burgdorferiinfectedhumans. EightyearsagopertheattachedstudytwoHuston Texasphysicianstestedtheirchronicallyillpatientsfor LymediseaseviaCDCWesternblotcriteriafindingall Thedatasuggesttheremayexistamuchlarger patientspositivefortheinfectioninastatewherethe unrecognizedpoolofBBSLinfectedindividuals prevalenceofLymeinfectedticksisonlyabout12% sustainedbypersistentintrahumantransferthatwe Excerptsfromthatstudy: provisionallycallEpidemicBorreliosisTreatment modalitiesandschedulestoeradicateB.Burgdorferi http://home.comcast.net/~runagain/LymeDiseasepand fromallpatientsregardlessofinfectionrouteor emic.pdf durationmustbecreated.Ifourexperienceholds,this willbeadifficulttaskandwillrequireseriousandrapid Werecognizedastrikingsimilarityinsymptomsand commitmentfromallnations. signsoftestpositiveindividualstootheruntested patientsofyours.Nohistoryofbullseyerashorillness ThecurrentCDClimitedandnarrowLymediseasecase followingtickbitewasreportedbythesepatients. definitionhasnotonlycaused muchconfusionwithinthe Therearetwodistinctbut ElaineFacteauWalker Thisismysecond medicalcommunitybuthas connectedformsofhumanB. comment...myfirstwasaboutlackof givenourlocalhealth Burgdoferiinfection.Theyet treatment and acknowledgement of this departmentsandinsurance unrecognizedformappears tohaveabroaderclinical diseaseandthesituationsthatpeopleare companiesthelicenseto presentation,wider ignoreanythingthatdoesnt facing.ThistimeIwouldliketosay geographicdistributionand fitintotheboxfurther "thankyou"forpostingyourquestion vastlygreaterprevalence delayingtherecognitionof and appearing to show interest in what thisepidemic. TheCDCdefinesLyme peoplethink/want,butIwouldalsolike diseaseexclusivelyasa InthetownofLitchfieldNew to ask you, the IDSA for a reply to all of Zoonoticillness.Congenital Hampshire77%ofthedeer tickshavetestedpositivefor andgestationaltransfercases ourcomments. Lymedisease.(Seeattached havebeendisregardedfor tickstudy) reasonsnotevidenttous. http://home.comcast.net/~runagain/NH%20Tick%20Stu dy.doc PatientsfalloutsidetheLymediseaseinclusioncriteria. WeareseeingentirefamiliesdevastatedbyLyme Illpatientspresentingwithdisseminatedsymptoms withoutmeetingdefinedLymeDiseaseendemicity diseasesimilartowhatisdescribedintheTexasstudy criteriaarealsoatseriousriskofnotbeingconsidered publishedeightyearsagobutonagrandscaleandyet BBSLinfected. wecontinuetowitnessadenialofthisepidemic. Theimmunereactionofinfectedpatientsnotmeeting Youhavetowonder;Isthisintentionalanddothosein theLymediseasecriteriahavefallenoutsiderigorous controlactuallyknowtheextentofthisepidemic?Look scrutiny. atalltheLymelegislationacrossthecountry.In

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additiontotensofthousandsofpatients,legislators andcliniciansallwantanswerstowhythishealth disasterhasbeenallowedtospiraloutofcontrol. Sincerely, CarlTuttle 33DavidDr Hudson,NH03051 (603)4794927 Website:NewHampshireLymeMisdiagnosis Petitionsite: http://www.change.org/petitions/subjective symptomsaftertreatmentofLymedisease SonyaLawlerToSharrieAndersonwhereisthisLyme awareneurologist?Imsurecan'tfindoneinupstate NY! JillKuschelItisn'tjustbadguidelines,itisyour(IDSA) completeignoranceandlackofwillingnesstolearn somethingnew.YouAREcriminals. LisaHiltonWelostanotherLymefriendlastnight. DebbieBodden,restinpeace...Iwishyouwould recognizewhatthisdiseaseisdoingtopeopleand families. CarmenLindermanIhavelost10yearsofmylifedueto Lyme,IwastoldthatIhadMSandtheywerewrong. Thepast3monthsIhavebeentryingtogetitback.I understandnowitwilltakeaverylongtimeand money!Ifthephysiciansareeducatedtolookfor somethingtheywill,ifnot,theywillnotandit'slikeit doesnotexist.Justthinkofhowmanypeoplesuffer andhavelosttheirlivesduetoignorance!Icantakemy dogtothevetwithatickanditwouldgetremoved, testedandthedogwouldgettreatedjustincase.IfIgo tothephysicianwithatickitwouldgetremoved, throwninthegarbage,thenIgetignoredifIsayLyme, somethingisverywrong!Whyareanimalsmore importantthanpeople,dovetscaremorethan physicians?Pleasechangetheguidelinessoatleastwe haveachance.Noonecanrepairthedamagetoa familyofapersonwhohasLyme. CarmenLindermanAnddon'tevengetmestartedon thetestingforLyme! MaryShafferCarmen,IwouldliketheIDSAto understandourstruggles,ingettingtreatment,inorder

forusto(hopefully)gettingourlifeback!Wehaveto seekoutandfindaDoctorthatknowsandunderstands thiscomplexdisease!Wehavetofindawaytotravel manymilesandmilestogettothisDoctor(some peoplehavetodrivehundredsofmilesandcrossstate lines),theneventhoseofusthathaveinsurancehave topayoutofourveryownpocketsfortreatments!ALL becauseoftheIDSAguidelines! MelissaJasonINYOYOURFACEIDSA! http://www.icontact archive.com/FBkbi1IUxiGEZy8CZmrP82C78eFGZehv?w= 2.Wearetakingyoudown:) EranNilsRedickAmIcrazyforthinkingImighthave LymeorisLymemakingmecrazyandnotmakingme seekthehelpImightneed? SonnenScheinTimetochangetheguidelines! SonnenScheinThenumberofinfectedpeopleisrising. Wewon'tgiveupuntilyourecognizeyourmistakes! KennethPoindexterIDSA,whatdowewant?Thisis whatIwant.IwantchronicLymediseasetobe recognizedandadequatetreatmentguidelines publishedthatrespondtothefactsofthedisease, KennethPoindexterIwanttoliveonedaywithoutpain, brainfog,fatigue,headaches,RaynaudsSyndrome, chills,fevers,hallucinations,ringinginmyears, numbnessinmyhands,myfeet.IDSAIwanttolive.I wantthelast18yearsofmylifeoversothatIcanenjoy mychildrenwhoIhavelostoutonmanyofthejoysof parenthoodbecauseofadiseasethatcouldgavebeen curedearlyon. KennethPoindexterIdon'tcarewhythishas happened.Idon'tevencarethatsomeofyourreview boardhasconflictsofinterestandshouldn'thavebeen onthereviewboardtobeginwith.Idon'twantapublic admissionofwrongdoing.Idon'twanttosueyou,I don'twantyoutobebittenbyatickandsufferthedaily painandagonythatIhave.AllIwantistobetreatedfor thediseaseIhaveandnothavetofightformy insurancecompanytocoveratreatmentthatIandmy doctorsknowwillgetmetoremission.Yes,Isaid remission.Iwouldbehappywiththat.Iknowacure maynevercome. MaryShafferIDSA,allweareaskingforistobeableto getourqualityoflifeback!!!TheIDSA'nonresponse'

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manypeopletellingyouoverandoveragainwhatwe showsNOcompassion,NOunderstanding,NO want?Youknowexactlywhatwewantandneed.Thisis glimmersofcaringaboutpeoplethathavethisdisease. afacade!Myquestiontoyouis,whyareyoueven Adiseasethatweacquired,simplyduetothefactthat botheringtoaskifyouaretoobusyfightingusinstead wewerebittenbyatick!IDSA,crawloutfromhiding oftryingtoreallyunderstandthisdiseaseandhelpus? underyourrocksandgiveusaresponse!!!Dontyou Howcanyoulivewithyourselves? hearourpleasforhelp! LisaHiltonAndweloseanothertoday MaryannWallTworekWhointheIDSAwillhavethe http://www.legacy.com/obituaries/nhregister/obituary. couragetoquestionthedogmaandstopdismissing aspx?n=elizabethawhite&pid=155536727 everyonewhodisagreeswithyouasacrazyoraquack? ElizabethA.WhiteObituaryonNewHavenRegister Don'tyouknowyousetthetone?Asyoushow www.legacy.com contempttowardsickpatients,sodomostother OnlineobituaryforElizabethWhite.ReadElizabeth doctors,includingthoseinothercountries.PLEASE listentothepatientsanddoctorswhoaresayingthat Lymeissomuchmorevariedandcommonthanyou RonaldJBerryJr.IbelieveIhaveundiagnosed suggestitis.Evenseparately Lyme....PLEASEHELP.... Bill Klavonski This was a complete waste fromthedisagreementover treatment,doctoreducation AndreaKujanekThankyou oftime.They[IDSA]postedthisby aboutthediseaseisabysmal, mistakeandarenowignoringit;theyare forpostingthequestion.I resultinginongoingmiseryof thinkitisblatantlyobvious justwaitingforittofadeaway.Isentthe whatpeople"want"from infectedpatients.Ihad16 storyandlinktoeverymajornewsoutlet, IDSAbasedonover2,300 monthsofdeclineandnew symptomsincl.2ERvisitsand andnotoneofthemresponded.Perhaps angryremarks.Whythe a3dayhospitalstay.I'dbeen coverupwithLyme?Whythe ifmoreofushaddonethatinsteadof essentiallydisabledfor6 lackofacknowledgement? expectingtheIDSAtohavecompassion monthsbythatpoint.Iwas Whythedenial?Whyare wewouldhavegottensomewhere.We're insurancecompaniesnot onlydiagnosedafterIwent chimingin?Thesestoriesare outofnetworktoaLyme alljusttalkingtoourselvespeople. HEARTBREAKING.Patients practitionerwhoconfirmed havebeenputthroughthe whatIalreadyknewthatI ringerwiththousandsuponthousandsofdollarsof haveneurologicalLyme.There'snoexcuseforthis situationinAmerica! unnecessarydollarsonworkupsthatincludeeverything fromCATscanstoMRIstolumbarpuncturestoevery ElaineFacteauWalkerThisismysecondcomment...my bloodtestimaginableEXCEPTaWesternBlotorthe firstwasaboutlackoftreatmentandacknowledgement newbloodculture.Whydoesaradiologyreportthat showswhitematterbrainlesionsnotincludepossible ofthisdiseaseandthesituationsthatpeoplearefacing. Lymeasoneoftheirdifferentialdiagnoses?Whylist ThistimeIwouldliketosay"thankyou"forposting MS,andSystemicLupusErythematosis,andAvascular yourquestionandappearingtoshowinterestinwhat peoplethink/want,butIwouldalsoliketoaskyou,the necrosisbutnotruleoutLyme.Sowhileourhealthhas IDSAforareplytoallofourcomments. beendeterioratingovertimeandtothetuneof thousands,youdenysimplegenericinexpensiveABX BillKlavonskiThiswasacompletewasteoftime.They treatment.Treatmentisnotexpensive.Ohwait,maybe postedthisbymistakeandarenowignoringit;theyare that'syourproblem. justwaitingforittofadeaway.Isentthestoryandlink toeverymajornewsoutlet,andnotoneofthem RobertaJennyI'dliketoseemoredoctorsawarethat responded.Perhapsifmoreofushaddonethatinstead Lymecanresultfromaculminationofdiseasecausing ofexpectingtheIDSAtohavecompassionwewould germsthataren'tallsusceptibletothestandard havegottensomewhere.We'realljusttalkingto treatmentadvisedbyyourguidelines.Ineverthought I'dhavetostopseeingmydoctoroutoftheguiltIfelt ourselvespeople. forgettingmoresickdespiteherdoingallshecoulddo withoutfearingbacklashfromthestatemedicalboards. AthenaVrentasWhydoyoubothertoaskquestion Americancitizenswithhealthinsuranceshouldn'thave whenyouhavereceivednumerouslettersfromso

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toresorttobuyingmedsoverseastogetbetter,and doctorsshouldn'thavetoputtheirlicensesontheline todefeatthisgrowingepidemic. DebbyMatthewsItissooddhowthecomment numbersaregoingdowneventhoughpeopleare commentingconstantly......AllIknowabouttheIDSA@ thispointisthattheyareverygoodatpushingthe deletebutton...GoodworkCowards!Don'taska questionifyoudon'twanttoheartheanswers,I learnedthatasasmallchild!Whydon'tyouMANUP andatleastaddresssomeoftheseconcerns???? MariaAngelesGmizMaillettSignthepetitiontourge: TheNGCtoremovetheguidelinesasitslistingrules require. TheIDSAtoreviseitsguidelinesinatransparent processthatincludesbothpatientadvocacy representativesandphysicianswhotreatchronicLyme disease. http://www.Lymedisease.org/petitionscript/index.php CarlTuttlePleaseviewtheletterbelowreferencingthe outdatedIDSAtreatmentguidelines: Jan25,2012 DeputyStateEpidemiologist DivisionofPublicHealthServices DepartmentofHealthandHumanServices 29HazenDrive Concord,NewHampshire03301 DearDrDionneOdom, MydaughterappliedforhealthInsurancethrough AnthemBlueCrossbutwasdeniedcoveragebecause shehasLymediseaseandAttentionDeficitDisorderas aresultoftheinfection.TheAnthemBlueCrosshealth applicationactuallylistsLymediseaseeventhoughthe InfectiousDiseaseSocietyofAmericaclaimsthatLyme diseaseiseasilydiagnosedandtreated.Strepthroatis easilydiagnosedandtreatedbutwedontseethat infectionlistedontheapplication. InsurancecompaniesarewellawarethatLymecanbe difficulttotreatduetotheclaimstheyareexperiencing astensofthousandsofpatientsremainillafterthe recommendedtwotothreeweekcourseofantibiotics. Insurancecompaniesaredenyingcoverageand reimbursementusingtheoutdatedIDSAnarrowminded

treatmentguidelinesasanexcusenottopayclaims. Therehasneverbeenanyproofthatpersistent infectiondoesnotexist,nonewhatsoever.Current antibodytestsonlyindicatepastexposure. AdvancedLaboratoryServiceshasdevelopedaculture testforLymediseasereportingpositiveculturesin80% ofsymptomaticposttreatmentLymepatient specimens.90%ofpositivecultureshavebeenfoundby daysixandtheremaining10%afterlongtermculture. Threeuniversitybasedresearchgroups,independentof thelabandfromeachotherarepresentlyintheprocess ofduplicatingthisculturebasedonthemethodsof AdvancedLaboratoryServices.Theseinstitutionswill publishtheirfindingsproducingseveralpublications validatingthisimportantdiagnostictool. Thedenialofthisepidemicandrefusaltoreimbursefor treatingpersistentinfectionhascauseduntoldpainand sufferingnotonlyinNewHampshirebutacrossthe nation. TheAnthemBlueCrossdenialletterisattachedtothis email. http://home.comcast.net/~runagain/Anthem%20Denial %20Letter.pdf CarlTuttle 33DavidDr Hudson,NH03051 Website:NewHampshireLymeMisdiagnosis http://home.comcast.net/~runagain/site/?%2Fhome%2 Petitionsite: http://www.change.org/petitions/subjective symptomsaftertreatmentofLymedisease CarlTuttleAnthemBlueCrosshealthinsurance applicationlistingLymedisease: http://docs.anthem.com/wellpoint/docs/viewDocumen t?mcItemNbr=1373NH+D AnitaHohendorfKolbe"Thedenialofthisepidemicand refusaltoreimbursefortreatingpersistentinfectionhas causeduntoldpainandsufferingnotonlyinNew Hampshirebutacrossthenation."Youreright,but thehumansufferingisnot"just"intheU.S.,theyare sufferingallovertheworld.TheIDSAguidelinesare appliedeverywhereandcausesufferingwithoutend. Pleasechangeitassoonaspossible.Youhavethe power

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SiniAndersonAwareness,educationandthetreatment ofLYMEDISEASEbyAmericandoctors.IDSArevised guidelinessopeoplecangettreated.PLEASE,it'sgetting reallycrazy.Itkindofwalks,talks,andsmellslikethe medicalcommunitiesreactiontoHIV/AIDSinthe90's. EricHigbieChangetheBorrelosis(LymeDisease) diagnosisandtreatmentguidelines.Myneurological LymeDiseasewasmisdiagnosedasmultiplesclerosis (MS).ThemisdiagnosisandMSdrugRebifhasthrown meintomycurrentlivingdeath.Havelostmycareer, myfianc',andmychancetohavemyownfamily. Thesediagnosisguidelinesarenotfairtothepatientsof physicians. Iwasundertheimpressionthatphysicianstruly,andin theirhearts,feltstronglyabouttheirHippocraticOaths. TheIDSAismakingamockeryoftheHippocraticOath. Withmymisdiagnosisandincorrectdrugs,Iamnow housebound.Nolongerstrongenoughtosleepinmy bed.Pleasechangetheguidelinesandfindatreatment thatcanrestoremyhealth! PatsySwinsonIwasalsomisdiagnosedasMSand ChronicFatigue.Mydaughterwasmisdiagnosedas Fibromyalgia.MysonwasmisdiagnosedasReumatoid Arthritis.MyhusbandwasmisdiagnosedasChronic Fatigue.Allbecauseoftheprevailingextremeignorance ofLymeDisease,whichweallhave.Wehadtoleavethe statetofindarealLymeDiseaseexperttofinallygetan accuratediagnosis.Pleaseeducateyourselvesandthose whoturntoyouforinformationsotheinsanitycan finallystop. KennethPoindexterCarlTuttle,thatisamazingthat BCBSincludesthisontheirapplication.Ofcourse,they arentacknowledgingthatitexists.Theywanttoknow ifyou'vebeentoldyouhaditsothattheycandenyyour coverage. Thisobviouslyisanapplicationforprivateinsurance. InsurancecompaniesareNOTallowedtodothisifyou aregettinginsurancethroughyouremployer KennethPoindexterBCBSwillNEVERadmitthoughthat theyusethistodenycoverage.Wecouldtestthat howeverbysimplysubmittingtheexactsame applicationwithdifferentnameandaddressinfowith onecheckingtheLymeandtheothernotcheckingit.Its horriblethattheywoulddenycoveragetosomeone withLymediseaseorHIVeven.WOW!

TiffanyGonzalezHowdoyousleepatnightknowing you'rekillingusbyignoringpropertreatmentof Borellia?Ignoringpropertesting?Ignoringthehuman lifethatyouallpretendtocareabout?! MicheleWoodHaynesWehavepostedourconcerns regardingtheblatantdisregardforLymediseaseand coinfectionsufferers.Let'sstartaletterwriting campaign.Let'sfloodtheirofficeswithlettersand phonecallsrequestingthattheyremovetheLyme diseasetreatmentguidelinesuntiltheycanrevisethem: 1300WilsonBlvd Suite300 Arlington,VA22209 Phone:(703)2990200 Fax:(703)2990204 KennethPoindexterMichele,I'vethoughtofthisand unfortunatelyitwillnotsolveanything.Youcan'tplead yourcasewithpeoplethatdon'thavehearts. RuthThomasIpersonallyamavictimofyouroutdated guidelines.Doctorsfollowingthesetookawaytwoyears ofmylifebyrefusingtodiagnoseandtreatbasedona positiveIGenixtest.Yourpompousinfectiousdisease doctoratMayoClinicdeniedtheveryexistenceofLyme specialists,andrefusedtoevendotheWesternBlot becausemyELISAwasnegative,evenwithfullclinical symptoms.Interestingly,athyroidspecialisthasfinally treatedmewith4monthsofantibioticssofar,andI havemylifeback!Nomoreelectricpokes,nomore jointpain,nomorebipolarsymptoms,nomore depression.Ienjoypeopleagain,andmybrainworksto planandorganizemylife.Yourguidelinesarestealing lives.TheyMUSTbechanged! DonnaZukaitisFalcone Bahahahahaaaaaaaaaaaaaaaaaaaaaa!"TheIDSAtold theNationalGuidelinesCommitteethatithadinternally reviewedtheguidelinesin2011anddecidedtheydid notrequirechange."Yup...cuznothingnewhasbeen discoveredatall... LOLBAHAHAHAHHHAAAAAAAAAAAAAA!Thefoxisin chargeofthehenhousefolks! http://www.Lymedisease.org/petitionscript/index.php MarkThompsonJustliketheworldisasphereandnot flat,persistentLymeDiseaseisrealandstolethehealth ofmyson.TheGuidelinesmustbebroughtuptodate, andmoreeffectivetreatmentsdeveloped.

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MaryShafferyesthenumberofpostshasdecreased... KennethPoindexter thisis#2337,howmanyhavebeendeleted...Iwould http://www.facebook.com/l.php?u=http%3A%2F%2Fw besurethatwouldbehundredsdeletedbytheIDSA... ww.lymedisease.org%2Fpetitionscript%2Findex.php&h= thisisprobably#3337post! hAQGzmddaAQFD5MCR8vQfAwnHUcwr3rkDYMTvU90e 69AmsA PETITIONFORIDSAGUIDELINESREVISION TraceyTiceSiegelIntegrityoratleastaccountabilityto www.lymedisease.org thediagnosisandtreatmentofLymesdisease.Read REMOVEOUTDATEDIDSAGUIDELINESFROMNGC yourclinicaltrials.Shouldn'ttakeANACTOFCONGRESS January26at11:45pm2 tosimplytreatpatientsfairly. MicheleWoodHaynesKenneth,wecannotsolvethis PatsySwinsonIt'ssomucheasiertojustignore problem.Wecanonlymakeenoughnoisethat THOUSANDSofdesperatepleasforhelp,andtoeven someonewillbemotivatedtosolvethisproblem. deletethemasiftheyneverhappened,thantoface realityanddotherightthing.Evenifyouareneverheld accountableinallyourlives,youcanbesurethatGod MichelleDonagheyTakeLymemoreseriously!!Get willholdyouaccountable.Ofthatyoucanbeabsolutely doctorstobemoreeducated!Mygeneralpractitioner doctorseemstothinkthatahugeroundbullseyerash certain. andtestingistheONLYwaytodiagnosethisdiseaseHe didsendmetoClevelandClinicbutIbelievebecauseof EranNilsRedicktheIDSAcan'thelpus,theGovernment the"tardiness"ofdoingthis(monthsafterhorrible willnotallowthemto,thisPlumIslandmistakewecan symptomsstarted,somewhichleftmebedridden)Iam forgivethegovernmentfor,itwasamistake,butnot leftwithconstantintermittentearpopping,jointpain, acknowledgingthisandtreatingthevictimsofthisbio numbnessandtingling,etc!Theteststhemselvessaid weaponizedtickisirresponsible! thattheyareNOTtheONLYwayadiagnosiscanbe made!IfIdidn'thaveLyme,IwouldliketoknowWHAT DebWilsonIamoneoftheluckyones.Afterhavinga tickbitethissummerIdevelopedlymedisease.2wksof Ihadandwhysymptomspersist! antibioticsdidnotresolvelymedisease.It'snowbeen3 monthsofantibiotics&I'mstartingtofeelsome JordanFowlerYouknowwhatyouneedtodoyoujerks. improvements.Icouldn'timagineattemtingtolivewith Youknowwhat'sgoingon.YOUKNOWTHETRUTH lymenotbeingtreatedlikeso ABOUTLYMEDISEASE!Don't manyothers. givethesilenttreatment.You EranNilsRedick theIDSAcan'thelpus, don'tgettodothat.Youare theGovernmentwillnotallowthemto, DebWilsonPleasechange supposedtobeprofessional thisPlumIslandmistakewecanforgive theguidelines!Toomany Doctors.YOUKNOW.Iknow thegovernmentfor,itwasamistake,but peoplesufferasaresult. youtakethishomewithyou. Youdiscussthisatyour notacknowledgingthisandtreatingthe meetings.Youtalkaboutit CarlTuttlePleasereadthe victimsofthisbioweaponizedtickis withyourcolleagues.YOU followingletteraddressedto irresponsible! KNOWWHATTHISISDOING theNewHampshire TOMILLIONSOFPEOPLE!You DepartmentofHealth. areasocietyofAMERICAyetyouwon'tstandupfor Jan29,2011 AMERICANS!Why?Whatisholdingyoubackfrom doingtherightthing?I'mnotthemedicalexpert,you DeputyStateEpidemiologist are.Deepdowninyourhearts,youknowthetruth.As DivisionofPublicHealthServices humanscaringforotherhumans,whywon'tyoufix DepartmentofHealthandHumanServices this?Youdoitforotherinfectiousdiseasepatients.You 29HazenDrive makeitalrightforthemtogetgoodtreatment.You Concord,NewHampshire03301 havethepowertofixthis.IFyoudon't,youknowthe burdenwillrestonyourshoulders,onyourhearts.YOU. DearDrDionneOdom, KNOW.THE.TRUTH!

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Anewprimatestudyidentifiespersistentinfectionafter antibiotictreatment.Thisisyetagainevidencethat chronicinfectionisrealandcontinuestobedenied. CarlTuttle Aggressiveantibiotictherapycouldnotkillall spirochetesinmonkeyswithdisseminatedLymedisease http://www.prohealth.com/library/showarticle.cfm?libi d=16759 Article: PersistenceofBorreliaburgdorferiinRhesusMacaques followingAntibioticTreatmentofDisseminated Infection Source:PloSOne,Jan11,2012 ByMonicaEEmbers,MarioTPhilipp,etal. Abstract: RhesusmacaqueswereinfectedwithB.burgdorferiand aportionreceivedaggressiveantibiotictherapy4to6 monthslater. Multiplemethodswereutilizedfordetectionofresidual organisms,includingthefeedingoflabrearedtickson monkeys(xenodiagnosis),culture,immunofluorescence andPCR. AntibodyresponsestotheB.burgdorferispecificC6 diagnosticpeptideweremeasuredlongitudinallyand declinedinalltreatedanimals. B.burgdorferiantigen,DNAandRNAweredetectedin thetissuesoftreatedanimals. Finally,smallnumbersofintactspirocheteswere recoveredbyxenodiagnosisfromtreatedmonkeys. TheseresultsdemonstratethatB.burgdorferican withstandantibiotictreatment,administeredpost dissemination,inaprimatehost. ThoughB.burgdorferiisnotknowntopossess resistancemechanismsandissusceptibletothe standardantibiotics(doxycycline,ceftriaxone)invitro [inlabsamples],itappearstobecometolerantpost disseminationintheprimatehost. Thisfindingraisesimportantquestionsaboutthe pathogenicityofantibiotictolerantpersistersand whetherornottheycancontributetosymptomspost treatment.

CarlTuttle Hudson,NH03051 Website:NewHampshireLymeMisdiagnosis http://home.comcast.net/~runagain/site/?%2Fhome%2 F Petitionsite: http://www.change.org/petitions/subjective symptomsaftertreatmentoflymedisease JanetHockingcureformorgellonsakaNCSNeuro CutaneousSyndrome HelenHouseIwouldlikeforMorgellonsstudytobe redonebycompetentandequalitytestingmethods. WomenwereinsultedintheCDCversion.Idonot remembereverbeingsoashamedtosayIliveinthe USA. PamelaMooreifeelasaLymeDiseasevictimthatthere isalightattheendofthetunnel.Wecouldgetthereif theywouldpleasepleasepleasechangetheguidelines. EmilieBrittneyAngelIt'samazinghowsomeone's deathcertificatereadsasthecauseofdeathasLyme Disease.Wow,itwasjustsomuchintheirheadthatit magicallyappearedthereontheirdeathcertificate. Thatmakesalotofsense.Thosethattestedpositivefor Lymeandthendiedwiththatasthecauseofdeath... Howisthatnotevidence?There'splentlymorethan justthattoo.Idon'tneedtoshowyou,everyoneelse alreadyhas.Sowhattheheck? LjNollItishardtobelieveyouarerightthatchronic Lymedoesn'texistwhenyouprofitsosignificantlyfrom thatlineofthinking.Yourresearchiscircular,andoffers nothinginthewayoffurtheringanyonestreatement. Allitdoesisaskthesamequestionoverandover.Ifyou havetoproveyourpositionoverandoverfor30years, maybeyourpositionisbogus.Itsinterestinghowyou alwaysgetthesameresultsinyourlab,buthowother labsdisagreewithyourfindings.Youwouldthinkthere wouldbesomeconflictintheresearch,ifitwas genuine.Truthisselfevident.Soonotherswillproove yourtestsinaccurate,youradviseprehistoricandyou willbecomeirrelevant.Afootnoteinthehistoryof corruptionandignorance.Alreadythereisanewmore accuratetestforLyme...yourruleisslipping. February5at7:36pm2 BobbyjoeHollidayIwouldliketoseealltheliesstop& actuallyseethetruththoughthetrash

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 Latestcommentasofthe printingthisdocument, Feb.7,4:14am(eastern): CarrieFreedomGimbelDillon AllIwantfrom societyistojustgetbacktosocietyandbea partofit.Becauseofyouroutdated guidelines,halfofmydoctorsthinkIhave onechronicdisease,theothersthinkI'm crazy,andonedoctorthinksIhaveChronic Lyme.Ican'tgeteveryoneonthesame page...Ican'tgetthemedicalpublictotake meseriouslywhenIamhospitalized,seethe G.P.oranyotherspecialist.Youguyshave oustedmefromsociety.Ijustwanttobe normal,healthyandfree.
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Obituaries
TheInfectiousDiseasesSocietyofAmerica (IDSA)suggestsinitsguidelinesthatLyme diseaseiseasytodiagnoseandiseasliytreated withthreeweeksofantiobiotics.Theguidelines theycontrolanddessiminateforothertick borneinfectionsalsosuggestthatthereisnot muchtoworryaboutfromtickborne infections,orthatthereisnotenoughresearch yettotell. Yet,wecontinuallymaintainalistofUScitizens andotherswhohavediedduetoLymedisease anditsconsequencesuponthehumanbody. Andthislistisjustthetipoftheiceberg. DoestheIDSArealizethateachnameonthislist wassomeone'slovedone,friend,family member?Dotheyrealizeeachoneofthese peoplewasoncealiveandfullofhopes,dreams andgoals? Maybetheydon't,butwedo.

Wededicatethisprojecttothe followingLymewarriorswho,in losingtheirbattles,inspiredusto fighton.

Dr.CaroleM.C.(Paul)Alton CarolearesidentofPepperell,diedSunday,Nov. 19,afteralongbattlewithLymedisease.Shewas thebelovedwifeofWilliamJ.Alton. Shegraduatedwithabachelorsdegreeindental surgeryfromtheUniversityofGlasgow,Scotlandin 1965,andadoctorateofmedicaldentistryfrom TuftsUniversityin1976.Mrs.Altonwasaprofessor atTuftsDentalSchoolthrough2005.From1978to 1991,shehadadentalpracticeonMainStreetin Groton.Shewasadedicatedsportsfanand particularlylovedskatingandNewEngland RevolutionSoccer. Accordingtofamilymembers,Mrs.Altonwas involvedinDogAgilityCompetitionswithhercollie, Lola.ShelovedawiderangeofmusicfromBilly IdoltoRachmaninov.Shehadawickedsenseof humor,familymemberssaid.Besidesherhusband, sheissurvivedbytwosons,PaulM.C.Altonand GuyW.B.Alton,bothofMason,N.H.;adaughter, PamelaC.D.AltonofNashua,fourgrandchildren, Ian,Winter,Renee,Camilla,andthreestep grandchildren,Nicky,Rusty,andC.J.Publishedin theLowellSunon11/24/2006. James(Andy)Anderson JameswasborninBakersfield,andresidedinSanta Barbara,California.HeservedintheUSCoast Guardfrom1968to1971,andthenearnedhis degreeinBusinessFinancefromCalState Universityin1976.JameswaselectedtoWhos WhoinAmericanUniversitiesandCollegesinthe fieldoffinanceandwasawardedtheWallStreet JournalAwardforFinance. AndersondiedNovember18,2006,afterathree yearbattlewithLymediseaseandMultiple ChemicalSensitivitiesillness. EdwardArnold EdwardwasborninClinton,TennesseeNovember 26,1951.HeattendedVanderbiltUniversity, becomingaPsychiatristafter8yearsofstudies. Eddieespeciallyenjoyedbaseball,fishing,and readingabouttheCivilWar.InJune,2000,he contractedLymeDiseaseandhadnotpracticed 252

medicinesince.Hislasttreatmentwasat VanderbiltUniversity. ArnolddiedFebruary25,2006,afterasixyear battlewithLymedisease. DeibyAshkenazy DeibycontractedLymeasateenagervisitingthe USA.BackinIsrael,whenshebecameill,shewas misdiagnosed.Thinkingshehadautoimmune disease,shewastreatedrepeatedlywithsteroids andgotworseandworse.Shebecame encephalopathic,wentblind,becameparalyzed belowthewaistandthendevelopedarmweakness andbladderandswallowingdifficulties.Shefinally wasdiagnosedwithLymewithavarietyofpositive testsonblood,CSF,andurine.Aggressive treatmenthelpedher,butbackinIsraelshecould notgetthiscare. JuneL.AndersonAtkins JunewasborninReifftonandwasthewifeof GeorgeT.Atkinsfor45years.Junewasagraduate oftheReadingHospitalSchoolofNursingand workedatseveralhospitalsbeforejoiningtheU.S. NavyasanRN.SheservedatvariousNaval HospitalsbothintheU.S.andoverseasandisa KoreanWarVeteran.SheresignedfromtheNavy asaLieutenantUSN(RN)tobecomeahomemaker. Shewasveryactivewithhercommunityservingin manyvolunteerpositionsfromSundayschool teachertoadocentfortheHistoricalSocietyof BerksCounty. AtkinsdiedJuly19,2000attheBerkshireCenter whereshehadbeenapatient.Herbodyisbeing donatedtomedicalresearchforstudyofVascular DementiaandLymediseasefromwhichshedied. BethAtkinson Beth,age61,ofFernindinaBeach,Fla,passedaway onDecember29,2011inherhome.Bethwasa teacherandanenvironmentalist.Hermottowas,I believemylifecanmakeadifference. MelindaBarrow Melindawas44,diedathomeonFriday,April22, 2011.Sheissurvivedbyherparents,Thurmanand 253

MollieBarrrow;andbrother,MarkofDeLand; daughter,Maria;andformerhusband,KyleFurbee ofLakeland,Florida;aswellasseveraluncles, aunts,andcousins.Funeralarrangements,which arecurrentlyincomplete,areunderthecareof AllenSummerhillFuneralHomeinDeLand. BuckRoyBenoist LookingatoneofthelastphotostakenofBuckRoy Benoist,onegetstheimpressionhewasafitman, notruggedinstatutebutruggedinlooks,witha demeanorthatimpliedhewasamanofthe AmericanWest.InfacthewashailingfromSouth DakotaandamemberoftheLakotaIndianTribe, withalastnamethathintshewaspartlya descendentofaoneofthemanyFrenchCanadian trapperswhohelpedsettlethatruggedpartofthe country.HowheendedupinExeter,RIisastory thatstartedoutinhappinessfortwopeoplewho foundalateinliferelationshipandendedlast Augustintragedy,thelattercausedbyatick carryingadisease. Hiswidow,CarlaNeubertBenoist,stillbreaksdown whenshedescribesherhusband'sordeal.Heronly companyinherExeterhomethesedaysarethree dogswhichwerepartofthestoryastohowthey met.Carlahasalwaysloveddogsandshelovedto writepoetry.Severalyearsago,shepostedsome poetryontheInternetandshegotareplyfrom BuckRoyBenoistwhohappenedtobevisiting someoneinPennsylvania. IntheInternetchatshelethimknowthatshelived withfourbigdogsCarlahaslongbeeninvolved withgreyhoundadoptionagencies."Hisreplywas thathewantedtomeetmebecausehefelthe couldtrustawomanwhohadfourbigdogs," recallsCarla. BuckRoyBenoistwasraisedonhisfather'scattle ranchontheCheyenneRiverSiouxReservation. Theranchisnowunderwater,thankstoa hydroelectricproject.BuckRoyeventuallygota degreeinwatershedsciencefromWestern WashingtonUniversityandspentalotoftime outdoors.

BuckandCarlaweremarriedin2000inasmall ceremonyconductedatURIwhereCarlawasan officeworker. In2001,Buckwithstoodalivercancerattackand partlythroughahealthydietrebounded."Hehad loweredhisbloodpressureandcholesterollevels andwewereeatingahealthydietwithlittlered meatandmuchfish,"shesays.Heenjoyedworking outdoorsintheyardoftheirmodestExeterhome butwhathereallyenjoyed,relatesCarla,was substituteteachinginSouthKingstownschools. Buckwasalwayscarefulwhenheworkedoutdoors, alwaysconsciousofticks,saysCarla."Healways checkedhimselfandworewhitesocks,"inorderto spotanyticks."Icheckedhimtoo,"sheadds. ButthenacoupleyearsagoBuckstarted complainingthathewouldgettiredeasily."He wouldgooutintheyardandgettiredfrom nothing,"shesaidnotingthatBuckwasnotabig complainer."Heisonewhowouldhavecoveredup abrokenleghehadthatwesternstoicism,"she says.BuckvisitedtheNarragansettIndianTribe clinic(theNativeAmericanshavereciprocal arrangementsbetweentribes)sayinghewas feelingbadandcouldnotexplainit.Theclinic referredhimtotheVeteransAdministration HospitalinProvidence(BuckwasaMarineinthe earlydaysoftheVietnamWar).CarladroveBuck uptotheVAHospital. Buck'sowntheorywasthathewashavingan anginaspellandtheVAdoctorsthoughtsotoo, saidCarla."Hisbloodpressurewasgood,his cholesterolwasdownandallofhisorganswere goodincludinghisliver,"shesays.Theydecidedto keephimovernight.Shelefthimatthehospitalat 2:30intheafternoon. "At8:30thatnight,hecalledandsaidtheywere keepinganeyeonhimandthathewouldseeme tomorrow.ThatwasthelasttimeItalkedtohim." At2:30inthemorning,CarlagotacallfromtheVA HospitalthattheyweretransferringhimtoMiriam Hospitalforawholebloodtransfusion"becausehe 254

hadaseveresystemicbabesiainfectionwhichthey wereunabletotreateffectively." "Igotalotofprayerchainsgoing,"saysCarlawho wentrightuptoMiriam. Buckwasputonarespiratorandmedicationto keephisbloodpressureupandwaskeptinadrug inducedcoma.Hehadtwofullbloodtransfusions accordingtoBuck'sdoctor"that'spractically unheardof,"Carlasaid.Afteraboutaweekanda half,Bucksufferedtwostrokestheywerenot detecteduntiltwodayslaterbyCATscan. WhenCarlagotthephonecallaboutBuck's strokes,shewasinformedthat2/3rdsoftheleft sideofhisbrainwaslost.Shewentintoaroomand screamed"No!"repeatedlyfor10minutes. ShecalledBuck'ssonanddaughterinlawin OklahomaandtheycametoRhodeIsland.The threeofthemwereatBuck'ssidewhenlife supportwasdisconnected.HediedonAugust30at 2:40p.m.,twoweekstothedayafterhewas admittedtotheVAHospital.Hewas66. Tothisday,CarladoesnotknowwhereBuck contactedtheinfectedtickthatgavehimBabesia. ItcouldhavebeeninWashingtonStatebutwhen shecontactedDr.ThomasMather,directorofURI's CenterforVectorBorneDisease,hedoubtedthat theory.Thetickencountercouldhavebeenintheir ownbackyard."Therewasnotelltalebullseye indicatingatickbite,"shesays.ButwithBabesiosis, therewouldn'tbe. CarlabelievesthestruggleBuckhadfightingthe massiveBabesiainfectiontriggeredthestrokes. "Theburdenofthetreatmentwasjusttoomuch forhissystem."Ifhehadsurvivedhewouldhave neededatracheatube,wouldhavelosttheuseof onearmandbeconfinedtoawheelchair,says Carla."Hewouldn'twantthat." Carlaisquitefamiliarwithtickbornediseases throughallherworkrescuingdogs,especially greyhounds.SheherselfhashadLymedisease

whichshefeelshasleftherwithsevererheumatoid arthritis. "It'ssadifithadbeencaughttwomonthsearlier, hemighthavesurvived.Itstrikesmethatitwas neverdetected,"shesays."Someday,someonewill comeupwithagooddiagnosticsystem." "Iamalsoextremelydeterminedthatpeople shouldstoptakingtickbornediseasesforgranted oractingasiftheyweretreatableandnonlife threatening," Nextspring,CarlaplanstotraveltoSouthDakota andvisitBuck'sfavoriteplacetospreadhisashes. Inthemeantime,shehasnothingbutpraisefor Mather'sworkinpushingthemessagethattick bornediseasesarepreventable."Hisiskindofa crusade.Thisisnotatrivialdiseaseitisonethat canhappentoanybody."Sheadmitsithastaken hertimetobeinaframeofmindtobe interviewed.ButBuck'sstorymayhelppeople,she says."IintendtodosomethingandIamwillingto talktopeople.Buckwouldwantmeto." BrianM.Bizier Brianage33,19782011 NORTHBERWICKBrianM.Bizier,whosemotto itsnotabouttheparents,itsaboutthechildren inspiredthelivesofhundredsoftroubledteens andchildrenacrossCentralMassachusettsand SouthernMaine,diedsuddenlyonAug.12,2011, fromcomplicationsrelatedtoLymedisease, tragicallycuttingshorthiscareerasaclinical counselor.Hewas33. Rememberedasapassionateandgentlepresence onthefrontlinesofmentalhealthcareinsomeof NewEnglandstoughestcommunities,Brianspent thepasttwoyearsonauniqueCounseling Services,Inc.programaimedatcreatingabroader visionofwhatcounselinginSouthernMainecould be. WhenBrianspokepeoplelistenedbecausehewas alwayssothoughtfulwithhiswords,saidNadine Fenderson,Briansprojectsupervisor. 255

AfterearningabachelorsinHumanitiesfromthe UniversityofNewHampshirein2001,Brianrapidly honedhisskillsatNewEnglandmentalhealthand substanceabusetreatmentproviders,including DevereaxandSweetser.Heearnedamastersin counselingfromUNHalongtheway. Admiredbyhiscolleaguesandclientsforhis humilityandopenheart,inprivatelifeBrianalso displayedgreatwitandoftenhalfjokedthathe lookedforGodhisownway.Buthisloveof readingandhisbookshelvespackedwith philosophy,psychologyandpoetryclassicsshowed theinspirationformendinglivescamefromthe mostprofoundsources.Duringhisteenageyears, Brianshinedonthesoccerandbaseballfieldsof HollisBrooklineHighSchoolinhisnativeHollis, N.H.Overtime,heblossomedintoaworldtraveler, versatileguitarplayer,WorldCupsocceraficionado andselftaughtgourmetcook,whopassionately grewhisownvegetablesandherbs.Heoncesaid, mygardenismychurch.Aboveall,hewasa youngfamilyman. Justfouryearsago,heandhiswifeof11years, Melanie,setupahomesteadintherollinghillsof Springvale.Therehesharedhisgourmettouch duringChristmasDayfeaststhatfeaturedhis special10hourcookedbeefbourguignon& homemadetiramisu.Theairatgatheringsfilled withmagicwhenheplayedmusicwithhis daughter,Sierra.Brianlivedahugelifeinashort time.Thoseclosesttohimfeltblessedtobeneara trueandyoungNewEnglandrenaissanceman. BryanChristopherFrydenbergBower June28,1982May2,2011. Dontfollowmystarlight Itgoeswellbeyondandyoumuststay anddriftawayuntilyoutooaregone BryanBower BryanwasborninOslo,Norway,onahalfmoon nighttothedelightofhisparents,JerryandJia.At amere4weeksofagehetookhisfirstbathinthe oceansurroundingoursummerhouseinsouthern Norway,safeindadsarms.

BryangrewupwithhisfamilyinIrvine,California, withfrequenttripstoseehisdadsfamilyand friendsinMichigan.Heexcelledinschoolandwas ontheWoodbridgeHighSchoolwrestlingteam. However,whenhemetrockclimbersatthe MastersCollegeinSantaClarita,hefoundhistrue passion.Hecouldbothleadandfollowmultiple pitchclimbs,alwayssafeandneverreckless, patientandencouragingtonewclimbers.Bryan couldbetrusted100%andtrainedtoscalethe3, 000footverticalfaceofElCapitaninYosemite,a placeheloved.Hisfriendsmisshimenormously. Atsomepoint,probablyonhisbelovedislandin Norway,Bryanwasbittenbyaninfectedtickand contractedLymedisease.Itwasnotdiagnosed untilseveralyearslater,bywhichtimetheillness hadbecomechronic.Thedevastatingdisease invadedhisnervoussystemandkepthimin debilitatingpain.Buthewouldntgiveup:he agreedtooneinvasivetreatmentafteranother, butthepainonlygrew.Bryan,whosenamemeans warrior,foughtlikethelionhewas.Hislastyears confinedhimtohisbednearlyallthetime,in agony. Bryanwasanartist,aphilosopher,andapoet.For loveofhisparentsandallheknewhecouldgive theworld,hedidbattleagainsttheoverwhelming enemyforyearsafteranordinarymanwouldhave givenup. PeterAnthonyBanducci PeterwasbornonFebruary27,1961asoneofsix children.HeattendedschoolintheMissionareaof Fremontandgraduatedin1979.Hestudied automotiverepairatayoungage,andwentto OhloneCollegewherehemajoredinbusinessand methisfuturewife,Pamela.Hewentontostudy manyautomotivecoursesandwasanASCcertified MasterTech.OnSeptember2,1986,he independentlyopenedPetesForeignAutoRepair. Itisinits21styearofbusinessandcontinuesto operate.PetehadthebusinesscertifiedasaGreen BusinessandaAAAapprovedfacility.Hisfamily meanteverythingtohim.Someofhismost enjoyabletimeswerespentoutontheboatwith hisfamily;celebratingfamilybirthdaysand 256

holidays;baseballatNilesCentervilleLittleLeague andwasabigGiantsandAsfan;heenjoyed music,especiallyMichaelMcDonaldandChris Isaak;andlastbutnotleastheenjoyedhiscallsto hismomandBatman.Petevaluedhonesty,family, friendsandtheLORDandwascaredforbyhis lovedonesathome. BanduccidiedSeptember28,2006,afteralong battlewithALSandLymedisease. GregBankert GregwasbornSeptember11,1950andwasthe belovedhusbandofTanyaL.Bankert,withwhom hecelebrated28yearsofmarriage.Gregformerly wasaselfemployedremodelingcontractor.Being anoutdoorsman,Gregenjoyedhuntingwithhis daughterandgrandson,andhisfamilyandfriends. HealsoenjoyedNASCAR,flyfishingandgoing campingatPoePaddyStateParkwherehewas mostrecentlyacampgroundhost.Greglikedhis icecreamandgoingonshoppingtrips.Heenjoyed usinghishandsandGodgiventalenttocreate furnitureandcraftsforhisfamilyandfriends.Greg wasamemberofSt.JosephsCatholicChurchin Dallastown,whereheenjoyedsinginginthechoir. BankertdiedathishomeOctober29,2006,aftera longbattlewithLymedisease. *Hewasadearsweetman,whocamefaithfully totheYorksupportgroup.Losingahusbandand fathertothisdiseaseisdevastating.CathyAttig R.GordonBasinger MrBassingerwasbornJuly11,1940.Hewasan esteemedmemberoftheaviationindustryforover 30years,presidentfirstofGordonAviationsales andthensince1979,presidentofPhaseTwo,Inc. Priortothat,amongotherprofessions,hewasan aircraftmechanic,avionicstechnician,flight instructor,andcommercialpilotforOzarkAirlines. Hewasalsoaccomplishedinathletics,certified scubadiver,formidableracquetballplayer,and4th degreeblackbeltandinstructorinShidokan ShorinryuKarate.BasingerSenseislongtime illnessbeganinthe1960swithLymeDisease.Since LymeDiseasehadnotyetbeennamedor

discoveredatthattime,hewentuntreated.He evencheckedintoMayoClinicinthe1970s attemptingtounderstandhissymptoms,tono avail. Bythetimehewasfinallydiagnosedandtreatment wasavailable,thediseasehadadvancedbeyond thepossibilityofacure.Hisimmunesystem becamemoreandmoreseverelycompromised and,therefore,pavedthewayforcancerwhich wasdiagnosedin1997.Heunderwentvarious proceduresandtwoyearsofchemotherapy, resultinginremission.InMay,2002,hiscancer returnedandhadmetastasized(spread).After severalmonthsofadditionalchemotherapyand muchexcruciatingpain,onDecember12thhewas toldhehadbutafewweekstolive.Hestillnever gaveuphope,faithorhiscommitmenttobattle illness.Theeveningbeforehediedhesaidtohis wife,TheydontthinkIcan,butImgoingtobeat this!Hewascourageous,optimisticand determinedtotheend,whichisnosurpriseto thosewhoknewandadmiredthisexceptionalman. Hewillbepainfullymissed. BasingerdiedDecember27,2002ofcomplications frombonecancer,secondarytoLymedisease. PatriciaJonesBauman Patriciaanartistandanimalloverandformer longtimeWiltonianresident,wasbornin Philadelphia,Pa.ShegrewupinWynnewood,Pa. PatriciaattendedBaldwinSchoolandlater graduatedfromBucknellUniversitywithabachelor ofsciencedegreeinbiology.Atalentedartist,avid golferandanimallover,sheillustratedabook writtenbyherhusbandintheearly1980scalled PlantsasPets.Thefamilytendedtomorethan 800plantsintheirHearthstoneLanehome,mostof whichwerestoredintheirgreenhouselike basementandasmallattachedgreenhouse. Thebook,publishedbyDoddMead,advisedplant ownerstotreattheirgreenerylikepets.Shewasan accomplishedwatercoloristandbecamevery interestedinplantswhileherhusbandwasworking onhisbook.Sheeventuallycontributed30pictures thatwereusedinthebook,includingoneforthe 257

cover.Inordertodrawthemcorrectly,youhave tolookatthemcarefully,shetoldTheBulletinin aninterviewatthetime.Itsachallenge.Sheand herfamilyenjoyedsummersinKennebunkBeach, formorethan40years. BaumandiedNovember24,2003atherhome. MoonfaceBear BearwasaGoldenHillPaugussettIndian.Heleda factionofthatConnecticuttribeinanarmed standoffwithstateofficialsin1993,becomingfora timeasymbolofAmericanIndiandefianceof authority. BeardiedonMay21,1996inahospitalinNorwich. Thecausewasleukemia,aggravatedbyLyme disease,saidhisbrotherQuietHawk,the Paugussettscouncilchief. LarryBennett Larryaformerbuildinginspectorwhosepoor healthhadcosthimhisjobanddrainedhis financeswasburiedMarch10withthehelpof donations.Bythetimehewas50,Larryhadbeen onlifesupportthreetimes,hadseveralstrokes, losthisjobbecauseofhishealthandspentallthe moneyfromhissixfigureincomeonmedical expensesforhimandhisfamily. BennettdiedFebruary26,2005fromcomplications ofLymedisease. Dr.JohnBleiweiss ALymepatienthimself,dedicatedhiscareerto helpingover1200ofthemostseriouslyillLyme victimsreturntoproductivelives.Heresearched andpublishedmanyarticlesinmedicaljournals thatstilldefinethestandardfortreatment protocolsandleadthewaytodiagnosisformany. Hewaswelllovedandrespectedbyhispatients whotraveledfromaroundtheworldtoseehim. BleiweisstookhisownlifeAugust13,1995,after beingpersecutedfortreatingpatientswithLyme diseaseforsevenyears.

BillyBoesch BorninBearCreak,Pennsylvania.Hewasthe ownerofCleanUpsUnlimited,alandscapingand haulingbusiness.Billyenjoyedspendingtimeatthe beachinOceanCity,workingaroundthehouseand wasconsideredthefamilyhistorian. Hewasmarriedforseventeenyearstohiswife Micheleandwillberememberedbymanyforhis courageandkindnessinthefaceofadversity. BoeschdiedJune10,2006,athishomein Highland,Maryland,fromcomplicationsofALSand Lymedisease. ObituarypublishedinTheWashingtonPoston 6/17/2006. DeborahJeanBodden December08,1951January17,2012 Age60,ofMilwaukeeformerlyofUnionGrove, passedawayunexpectedlyatherhomeonJanuary 17,2012.ShewasbornDecember8,1951toGlenn andLela(neeVancil)BoddeninBurlington,WI.She livedherearlylifeinUnionGroveattendingboth UnionGroveGradeandHighSchools.Shewenton toattendUWWhitewaterandworkedasan OccupationalTherapistatSouthernWisconsin Center.ShehadlivedinWheatlandmanyyears, andthenhadmovedtoMilwaukee6yearsago. Debbielovedbeingaroundanimals,especiallyher pets.Debbiewasacaringpersonandwasalways theretohelpherelderlyneighbors. Shealsoenjoyedcrafts,gardening,fishing,sports, playingsoftballandwasanavidGreenBayPacker fan.Debbiealwaystreasuredthetimeshespent growingupinUnionGrove. ThisSuicidePreventionpagewasmadeinmemory ofDebbie.http://whatislyme.com/ifyouever feelsuicidal/ LeoBogart LeowasaPolishborn,formerU.S.Army IntelligenceofficerinWorldWarII.Heauthored morethanadozenbooksandhundredsofmedia tradejournalarticles.Dr.Bogartservedasthe executivevicepresidentandgeneralmanagerof theNewspaperAdvertisingBureau;taught 258

marketingatNewYorkUniversity,Columbia UniversityandtheIllinoisInstituteofTechnology; andwasaseniorfellowattheCenterforMedia StudiesatColumbiaandaFulbrightresearchfellow inFrance. Atthetimeofhisdeath,Bogartwasadirectorand seniorconsultantforInnovation,aninternational mediaconsultingfirm,andwroteacolumnfor Presstime,themagazineoftheNewspaper AssociationofAmerica. BogartdiedOctober15,2005,tenweeksafter beingdiagnosedwithBabesiosis,atickborne, malarialikediseasethatdestroysredbloodcells. ObituarypublishedinTheNewYorkTimeson 10/19/2005. JudithRossBoynton JudithreceivedherdegreeformtheUniversityof Pennsylvaniaandwasafacultymemberat AbingtonFriendsSchool,theEthelWalkerSchool, RenbrookSchoolandtheVirginiaBeachFriends School.SheservedastheheadoftheTownHill Schoolfrom1992to1996.WifetoRichard FitzRandolphBoyntonfor27years,shealsohad twochildren. BoyntondiedOctober10,2004atSharonHospital ofALSsecondarytochronicLymedisease. ObituarypublishedinTheRepublicanAmericanon 10/13/2004. ScottBrazil AtwotimewinneratboththeEmmysandthe GoldenGlobesandwasanexecutiveproducerand directorofFXsseriesTheShield.Inadditionto theGoldenGlobeforTheShield,Brazilsharedin twooutstandingdramaseriesEmmysandone GoldenGlobeforHillStreetBluesin1983and 84.BrazilalsodirectedepisodesofGreys Anatomy,JAG,Nip/TuckandCSI:Miami, amongothers.Hewasacoexecutiveproducerof GideonsCrossingandL.A.Doctorsaswell. Scottwasatremendousman,aloyalfriend,a creativeproducerandthebestdirectorwehad.

However,herarelygotthecredithedeservedfor allthosethings,becauseheneveractivelysoughtit out,saysShawnRyan,creatorofTheShield. Thefullrangeofhishumanityandtalentswas fullyknownonlytothoseofuswhohadthe privilegeofworkingsidebysidewithhimevery day.PeterLigouri,theformerpresidentofFX whosnowheadofFOX,saysitwasanhonorto haveworkedwithBrazil.Icannotthinkofanyone whoengenderedmoreaffection,admirationand respectthanScott,Ligourisays.Hefiercely guardedthecreativevisionofTheShieldand zealouslysupportedandlovedallofhisassociates. Heneverdrewattentiontohimself,andhe deservestheovationthatwehaveforhiminour hearts.HecontinuedtoworkonTheShield whilefightingALS,usingamotorizedwheelchairto getaround. BrazildiedApril16,2006atShermanOaksHospital inLosAngelesofcomplicationsfromALS(Lou Gehrigsdisease)andLymedisease. Hislossisdevastatingtouspersonallyandtothe televisionindustry,professionally.ShawnRyan ObituarypublishedinTheBBCNewson4/20/2006. EllenCary EllenwasthedaughterofEricandHarrietSmith Cary,wasbornMarch4,2000inHannibal,MO.She wasafirstgradestudentwholikedtofish,draw andplaywithherfriendsandfamily.Sheattended ParkUnitedMethodistChurchandMt.Pleasant BaptistChurch. CarydiedMay23,2007atChildrensHospitalinSt. Louisaftera10dayinfectionwithEhrlichiosis. EllenwasaBeautifulLittlesevenyearoldgirlthat wassofulloflifeandalwaysthoughtofeveryone else.HarrietCary JackColenda ByRebeccaSewald OfallthethingsJohnColendaaspiredtodowith hislife,gettingatattoowasneveroneofthem.But inearlyApril,the40yearoldPerryvilleresident foundhimselfseatedinachairatHouseof 259

PonchosinAbingdon,Md.,wherehewouldleave laterthatdaywithhisfirsttattoo.Theartistic designthatnowencompassesColendasright shoulderismorethanjustatattoo.Itsamemorial tohisson,Jack,whopassedawaysuddenlylast Novemberfromhealthcomplicationsafterhe developedLymedisease.Atattooisnot somethingIthoughtIwouldeverget,butunder thecircumstances,IdecidedIwoulddoit,andIm verypleasedwiththewayitturnedout,While ponderingthedesign,hewantedittobe somethingthatnobodyelsewouldhave.His conceptforthetattoocenteredonhis8yearold sonspassionforlacrosse:Heplayedfootballand lacrosse,buthecouldneverwaitforlacrosseto start.Assoonasfootballwasover,hehadhisstick readytogo.Hegavethetattooartist,Josh Johnson,apictureofhissonslacrossestick,shoes, helmetandgloves,whichwereincorporatedinto thedesign.HeevengotJacksnameinthere wherehewrotehisnameonhisgloves,pointing tothetinylettersthatdidindeedspelloutJack. Hewantedhistattootofeaturemorethanjusthis sonslacrosseequipment.Ithoughtitneeded somekindofbackground,hesaid.AtPattersons funeralhome,theytookhisthumbprintbecause therearesuppliersouttherethatcanmakejewelry withyourthumbprintonit,anditjustclickedthat wasthebackgroundIneeded. Colendacontactedthefuneralhomeandhada staffmembersendhimanelectronicimageofhis sonsthumbprint.Heprintedtheimageandgaveit toJohnson,whowasabletosketchtheprintand includeitinthetattoosdesign.Thisisamemorial thatIcankeepwithmeallthetime,hesaid.In additiontogettingatattoo,hehasbeenbusy workingonanotherprojectinhonorofhisson.He andhiswife,Jennifer,areintheprocessofstarting afoundationinjacksnamethatwillbenefitlocal childreninneed.TheunofficiallynamedJACK FoundationwillstandforJustAboutCommunity andKids,andexplainedthatheisintheprocessof filingpaperworktohavethenameapproved. BillChinnock ChinnockaresidentofYarmouth,Maine.Oneof theearlyfoundersoftheAshburyParkmusic

scene,Billsfivedecadecareerasasinger songwriterproduced13albumsandin1987,won anEmmy.Chinnockwasaselftaughtinnovator who,besidesmasteringtheguitarandthe harmonica,alsomadefilmsanddabbledin computergraphics.Hehadhisownstudioandalso workedasaproducer.Hewasanadvocatefor otherpatientssufferingfromLyme,acondition thataffectedbothheandhiswife. ChinnocktookhisownlifeMarch7,2007,afteran eightyearbattlewithLymedisease.Hewassuch anincrediblytalentedperson,andagreatbrother, abeautifulbrother.Hewasafunny,wonderful, entertainingguy.CarolinePayne ObituarypublishedinTheNewYorkTimeson 3/9/2007. BethCoen BethwasaresidentofNorthProvidence,Rhode Island.ShewasahistoryteacheratSouth KingstownHighSchoolfor12yearsuntilshe becameillin2004.BethreceivedanAssociates DegreefromSalveReginaUniversityinNewport andgraduatedwithaBachelorofArts,summaCum LaudefromRhodeIslandCollege.Shewasalsoa memberoftheBoardofDirectorsoftheHolocaust MuseuminProvidence.InmemoryofBethandher strugglewiththisdevastatingillness,herfamilyhas begunBethsQuest,anonprofitfoundationthat isdedicatedtopromotingLymediseaseawareness andprevention. CoentookherownlifeJanuary8,2006,afteraten yearbattlewithLymedisease. WerecarryingonBethswork.Itwasherquestto bringLymediseaseawarenessandpreventionto thepublic.RodBowley Dr.JaneColfax JaneColfaxmadehistorybybecomingthefirst femaleobstetriciangynecologisttopracticeatSt. JosephsMedicalCenterinPatersonatatime whenfemalephysicianswererare.Afterservingas anArmynurseduringWorldWarII,sheattended WomensMedicalCollegeofPennsylvaniaand 260

graduatedin1955.Colfaxwasverydedicatedand itisestimatedthatshehasdeliveredsome2,000 babiesduringherlongcareer.ShecontractedLyme diseaseduringthe1980sandwentundiagnosed foryears.Eventually,shehadtogiveupher practicebecauseshelosttheuseofherhands.Dr. Colfaxwasconfinedtobedforalmosttwelveyears beforeshepassedaway. ColfaxdiedJune15,2005ofastroke,secondaryto Lymedisease. KimberlyAnnKymNagleCooper AresidentofColumbia,Missouri.Inherchildhood shestudiedgymnastics,whichgrewintoalifelong loveofmoderndance.Shewasanaccomplished swimmerandespeciallyenjoyedhermanyvisitsto FingerLakeStateParkandRockBridgeStatePark. Inthesummerof2005,Kymrescuedasmallboy fromdrowninginabackyardpool.Before contractingLymedisease,sheservedasalicensed practicalnurseandisrememberedforherkind heartandspecialskillsasactivitiesdirectorworking withseniorcitizensatFayetteNursingHome.Kym isespeciallyrememberedforherloveoffamily, music,dancingandthegreatMissourioutdoors. CooperdiedJanuary16,2006,afteraneightyear battlewithLymedisease. VickieCrawford Vickieslifewasdevotedtoeducationandchildren. SheearnedtwoMastersdegreesinthefieldsof EarlyChildhoodDevelopmentandPhysical Education,andathirdinLibraryMedia.Shetaught forseveralyearsbeforebecomingtheLibrarianfor fouryearsatAthensMiddleSchool.Herillness forcedherintoamedicalleaveandthenearly retirement. CrawforddiedSeptember10,2006,of complicationsstemmingfromLymedisease Shewasaspecialpersonbecauseofher commitmenttoeducationandherdesiretomakea differencewithchildren.JoeJackson

AlasdairCrockett AresidentofBrightlingsea,EssexintheUnited Kingdom.AUniversityProfessorandoneofthe countrystopexpertsonmodernlife.Dr.Crockett heldaMastersPhilosophydegreefromCambridge andwasachiefofficerwiththeInstituteforSocial andEconomicResearchatEssexUniversity.Hehad beensufferingfromdepressioncausedbyLyme disease,whichhebelievedhehadcaughtduring histimespentstudyinghillfarmingin Northumberland.AspokesmanforEssexpolice saidthatDr.Crocketthadbeenexhibiting symptomsofextremeanxietywhichisamongthe effectsofthediseaseinitsadvancedstages. CrocketttookhisownlifeSeptember14,2006 afteradifficultbattlewithLymedisease. JonWilliamsDavis PLEASANTHILLJonWilliamDavis,51,formerlyof Covington,passedawayFriday,March4,2011,at hisresidenceinPleasantHill.Hepassedpeacefully athomesurroundedbytheloveofhisfamilyand friends,aftera10yearbattlewithLymeDisease inducedillnesses. http://www.dailycall.com/main.asp?SectionID=119 &SubSectionID=205&ArticleID=171257&TM=70412 .01 Dr.JohnDrulle AgraduatefromtheNewJerseyInstituteof TechnologywithaB.S.inMechanicalEngineering in1967beforereceivinghisDoctorofMedicine.Dr. DrullewasapioneerinthefightagainstLyme diseaseandothertickborneillnesses,working towardeducatingthepublicabouttheneedfor prevention,treatmentandresearchontickborne infectionswithspecialconcernsregardingthe effectsofLymediseaseonpregnantwomenand theunborn.Becauseprotocolswereuncertainin theearlydaysofthisdisease,hewouldnevergive apatientamedicineunlesshetrieditonhimself first,becausehehimselfwasinfectedwithLymeas wellasothertickbornediseases.Tosayhis practicewaspatientcenteredisan understatementhewouldgosofarastopickup prescriptionsanddeliverthemtoapatientshouse whentheyweretoosicktodosothemselves.Even 261

whenhehimselfwasbattlingchronicfatigueand pain,hekeptapositiveoutlookandsenseof humor.JohnDrullewastrulyablessingtoallwho knewhimuntilhesuccumbedtoLyme.Hismany articlesandpresentationspavedthewayfor properdiagnosisandtreatmentforallwhowereto follow. DrullediedNovember7,2003afteravaliantbattle withLymeandcoinfections. JeannetteEichelberger(MammaLyme) WearesadtoannouncethepassingofJeannette oftheGettysburgTOFULymeGroup.Shediedon Sunday,December4,2011duetocomplicationsof LymeDisease.Shewasknowntoourcommunity andMammaLyme.Wewillmisshergreatly. HerbertBartFenolio ResidentofSanMarcos,CA May24,1940Dec.16,2010 BartspentChristmaswithJesus.Hecamehome fromthehospitaltohisfamilywithHospiceon Decemberl6th,2010,andpassedawaythat eveningwithpeaceandjoy.Hiswifeof46years, CarolHeidiFenolio,hisdaughterJoelleGrove& herhusbandBrian,andhissonDante&hiswife Beth,brotherinlawRickHyde&wifeDiane surroundedhimwithloveaswellasfriendsand grandchildren.HegrewupinSanJoseandFall RiverMills.HegraduatedfromSJSUandmarried theloveofhislife,Heidi,in1964.He&hissister, BrendaAlbrecht,openedthefirstDolphin Aquariuminl965whichwasahugesuccessand builtintotheDolphinPetVillage,whichisstill ownedtodaybyBrenda.BartdevelopedDolphin Design,Inc,andbegantocustomdesignaquariums forhospitals,doctorsoffices,andbusinessesinthe SantaClaravalley.Hisloveofmeetingnewpeople allthetimeandhisloveofthebusinessmadeBart sohappy.Hislastprojectbeforesellinghisbusiness wastheCupertinoCityLibrarysaltwateraquarium. HeretiredandmovedtoSanDiegowithHeiditobe closetonewgrandchildren. BartwasdiagnosedwithLymeDiseaseinAugust, 2009,afterbeingmisdiagnosedwithALS.Hefought thishorrificdiseasewithstrengthandgrace.

AngelaQuinnHausman AngelahadLymeDisease.Shewasbittenbyatick inSanDiegoover10yearsago.Doctorstreatedher foreverythingunderthesununtilshefinallyfound aDoctorwhospecializedinchronicdiseases.They almostimmediatelydiagnosedherwithLyme Disease.Shesufferedforyearsandthestupid medicalprofessionstillwontadmittotheworld thedevastatingeffectsofthatdisease.Lyme Diseasehasnowtakenanotherlife.Shewas36 yearsoldandleavesbehindagreathusbandand twobeautifulchildren.Shewasmyprideandjoy andImarveledatallheraccomplishmentsduring hershortlife.ShewasamagnificentdaughterandI amsoproudofher.Iveneverbeforefeltthe agonyImfeelingnow. SheaHermsen FromSheasMom,Roxi~Sheawasanaward winningvideographeratage7.Alongwithhisolder brotherBram,theyplacedfirstattheBCStudent Filmfestivalandbestintheexperimentalcategory. TheyalsosenttheirfilmWhatsinaPuddleto theVictoriaindependentfilmfestivalandwonthe SilverShortieAward.Sheaplayedelectricguitar. HelovedtheBeatles,(hewasnamedafterShea StadiumwheretheBeatlesplayed)hewaslearning Yesterdayandhelovedtoperform.Healsoloved ReggaeandwantedtotraveltotheCaribbean. Sheawasanactor,playingCharlieBrowninthe schoolplayandheplayedsoccer,rodehisbikeand wasastrongandavidswimmer. Shealovedscienceandcreatedelaboratescience projects.Ironicallyheevenparticipatedinhis sciencefairthedayhepassedaway.Heloved sciencecampsattheVernonScienceCentre,a placehisgrandparentsfounded.ThenameShea meansscientificandingeniousoneandthatfithim toatee. Sheahadagreatsenseofhumourandwasa friendlysort,astarrykindofguyishowShea describedhimself.Hehadlotsoffriends,gotgreat gradesandwasveryloving.Helovedtoplaywith clay,andbuildlegowithhisbrother.Hewrote storiesanddrewcartoonsandmadeclaymations andanimations,ofsomeofthem.Heplayed 262

nintendoandusedittocreatehistitlesforhisfilms and,ofcourse,helovedcomputers. Thedaybeforehepassedawayheaskedmeto DoublePinkySwearthatIwouldnotcommit suicide.Ihopethatotherswillmaketheirown DoublePinkySwearpromiseinSheasmemory.I keptmypromisethroughLymeandgrief,todayI amsomuchbetterandenjoyingmygranddaughter andgrandson,whoissomuchlikeShea. Sheawasayoungboy,butanoldsoul. IfyouarewillingtotaketheDoublePinkieSwear PromisetoShea,pleasegohereandsignthe bottomofthepage. http://whatislyme.com/ifyoueverfeelsuicidal/ TerriFishelHokit BornOctober15,1945inEscondido,California.In 1968,shemovedtoCapitolawithherdaughter. TerriworkedatCabrilloCollegeandspentmany yearsintheTitlebusinessinSantaCruzandSanta Claracounties. TerridiedJanuary24,2006atDominicanHospital inSantaCruz,California,aftersufferingfromLyme diseaseandbreastcancer. BryanGrimes BryanwasanativeofWashington,NorthCarolina. HegraduatedfromtheUniversityofNorthCarolina in1961andbecameacommissionedofficerinthe USAF,servingforaperiodoftimeinVietnam.He wasselfemployedinvariousbusinessesand startedTimeFoodsInc.,withhiswifeandsonin 1981.BryanwasamemberoftheLyonsCluband theToastmastersClubandalifetimememberof theFullGospelBusinessmensInternational.He wentquietlythroughlifeandwillberemembered bymanyforhiskindnessandmanywhonever knewhimbenefitedfromhisgenerosity. GrimesdiedDecember29,2006inPittCounty MemorialHospital,afterseveralyearsofbattling Lymedisease.

AlexHermstad Sleepinheavenlypeacebeautiful,sweet,precious Alex.Youfoughtthegoodfightandwillreceive yourjustreward.Loriyouareamotherwarrior beyondwords,aheroandaninspirationJayci youareabrave,loving,strongsisterandAlexwill liveonthroughyouTillyouallmeetagainin heaven,mayGodgiveyoupeace,strength, enduranceandcomfortinknowingthatyourbaby isrestinginthearmsofJesus.Somuchloveand prayersarewithyou. http://www.youtube.com/watch?v=mDZuvKvH5Ig BrianHirsch BrianwasborninTampa,Floridaandresidedin McDonough,Georgiawithhiswifeandchildren.He wasamemberoftheSalemBaptistChurchwhere hetaughtSundayschool.Heplayedandcoached sportsandwasanavidNASCARracingfan.Brian wastheownerofEagleElectricandwasknownin thecommunityasacolleague,notacompetitor. HismottowasIcanchoosetolaughorIcan choosetocry.Ichoosetolaugh. HirschdiedJune19,2006,afterasevenyearbattle withALSandLymedisease. CarrieChase BornMay28,1959,inSantaAna,CA,wenttobe withherLordandSavioronJuly9,2011. CarriegraduatedfromCalPoly,SLOwithateaching degreeinHomeEconomicsandreceivedaMasters inSpecialEducation.Shebeganherteachingcareer atVandenburgMiddleSchoolintheearly1980s teachingHomeEconomicsandScience.Sheformed astatechapteroftheFutureHomemakersof AmericaatVMS,whichwassopopularatschool thatitbecamethelargestchapterinthestate. MovingtotheHawaiianIslandofMaui,Carrie taughtforseveralyearsbeforereturningtoher homeinArroyoGrandewhereshetaughtscience atLompocValleyMiddleSchool.Duringthattime severalofherstudentsaskedhertostartaBible BelieversClubthatwasattendedbymany students.Carriehadagiftofreachingoutto people,especiallyherstudents.Theyknewshe genuinelylovedandcaredforthem. Forthepastfiveyears,Carrieworkedasatrainer 263

withTheCenterForTeacherEffectiveness,andwas recentlypromotedtodirector.Shewasa wonderfulmother,daughter,sisterandfriend.She willalwaysberememberedforherfaithinChrist andherspontaneouszestforlife. CarrieissurvivedbyhersonCharlesRobertChase, herparentsRobertandCarolynChaseandher siblingsMerrilAllen,MartyArismendi,andBill Chase. AmemorialcelebrationofCarrieslifewillbeheld onMonday,July18th,at1p.m.atGraceBible Churchlocatedat100RodeoDr.,inArroyoGrande. InlieuofflowersdonationscanbemadetoLimes DiseaseResearchincareofCarriesfamily. MichelleHeap OFALLON,ILLINOIS(KTVIFOX2Now.com) ThesuddendeathofanOFallonIllinoisparamedic hasleftthecommunitystunned.46yearold MichelleHeapwasadmittedtothehospital Mondayanddiedthenextmorning.Officials suspectatickbitemayhavekilledher.Jeremy ShermananOFallonParamedicsaid,Everything happenedsoquicklyandshewasgonethenext morningitwasjusttoofast. TedHoggard TedwasbornNovember5,1982.Heattended ButteCollegewhereheearnedhiscredentialsas anEmergencyMedicalTechnician.Hisinterests weremanyandrangedfromcompetitiveteam ropingtohunting,fishing,soccerandmartialarts. Heparticipatedinpioneeringresearchinthe treatmentforLymeutilizinghyperbaricoxygen therapy,andwaslookingforwardtomanagingthe facilityinChico,Californiaaftercompletinghis education. HoggarddiedAugust19,2004,afterbattlingLyme diseaseformanyyears. RobertJones RobertpassedawayDec12,2011at4PM.Bobwas quiteillwithLymeformanyyearsandhadtolimit hisactivitiesaccordingtohisenergyandstrength. Earlyindicationsuggestastrokeorheartattack

thatoccurredwhilehewasdoingthedailyword jumble.Hediedsuddenly.HeissurvivedbyBarb andthreekids. DillonKing KingwasborninSantaCruz,Californiawherehe livedtherestofhislife.Hegraduatedwithhonors fromUCIrvineandtheChristianSchoolofMinistry. Hispursuitswerehealthcare,jewelrydesign, manufacturingandart.Healsopreformedmany marriagesforhisfriends. KingtookhisownlifeJanuary5,2005,after sufferingfromseverecomplicationsofLyme diseaseandMorgellonsdisease. JamesKoch Amemberformanyyearsofthemedicaladvisory committeeforthePlannedParenthoodLeagueof Massachusetts,devotedhiscareertohelping controlpopulationgrowthwiththeinventionof thecervicalcap.HewasborninSt.Pauland graduatedfromSt.PaulAcademy,receivinga bachelorofartsfromHarvardCollegein1951,and amedicaldegreefromTuftsUniversitySchoolof Medicinein1956.Researchinginbiological chemistryformanyyears,hethenturnedhisfocus towardtheadvancementofwomensrightsin workandadvocacy. KochdiedFebruary13,2007inhishome,following aseriesofstrokessecondarytoaseverecaseof Lymedisease. ChristinaLambeth ChristinawasbornJuly8,1980inForsythCounty, NorthCarolina.ShewasamemberofHopewell MoravianChurch. LambethdiedFebruary10,2000,afteralong struggleLymedisease. JonPierreLavallee Anathleteandanavidsportsfan.Hewasagifted woodworkerandcraftsman,buildingfurnitureand restoringantiques.Formanyyears,hewasa motorroutedriverfortheCapeCodTimes deliveringintheareasofProvincetownandTruro. 264

LavalleediedJune19,2002atBethIsrael DeaconessHospitalinBostonofLymedisease. JasonLeeofIngleside FriendsofthefamilyofJasonLee,35,mayvisit from4to8p.m.Sunday,Jan.2,atStrangFuneral Chapel&Crematorium,410E.BelvidereRoad, Grayslake.Thefuneralservicewillbeheldat11 a.m.Monday,Jan.3,atthefuneralchapel. IntermentwillfollowinAvonCentreCemeteryin Grayslake.BornNov.15,1975,inLibertyville,the prideandjoyofTomandAnnette(neeBohannon) Lee,hepassedawaypeacefullyathomeThursday afternoon,Dec.30,2010,surroundedbyhisloving family JohnMartini BorninBinghamton,NewYork,Johnresidedin Plymouth,Massachusettswithhiswifeof19years. Hewasaformerconservationexpert,cabdriver, chef,highschoolteacherandlandscapebusiness owner.Johnearnedadegreeinpoliticalscience andAmericanhistoryfromUMassBostonin1972. In1985,heearnedhisteachingcertificateat SoutheasternUniversity.Johnwaswelllikedand eventuallywonanelectionforSelectmaninhis newlyadoptedhometown.Hehadmanyinterests andtalents,andwasveryactiveuntilhecontracted Lymewhileworkingoutdoors. MartinidiedJuly24,2005,afteradevastatingly swiftbattlewithLymedisease. Hewasafamilyguy,warm,caringandwonderful, andhemadeyoufeelveryspecial.Michelle Turner DavidMcHoul MchoulwasborninBoston,Massachusettsand residedinProvincetown.HewastheCapeFuneral Homedirectorsince1985,carryingonthefamily business.DavidalsoservedintheMarineCorps duringtheVietnamWar.Heenjoyedridinghis bicyclearoundtownandspendingtimewithhis manyfriendswholovedhissenseofhumor. McHouldiedJune6,2005atCapeEndManor NursingHomefromcomplicationsofLymedisease.

Dr.TeresaRoyerMacKnight OneofthefoundersoftheInternationalLymeand AssociatedDiseasesSociety.Shepracticed medicineuntilbeingdisabledbyneurologicalLyme disease.Macknightbecamethegroupsfirst presidentin1999. TheDailyItem,Sunbury,PA:August18,2010 Dr.TeresaRoyerMacKnight,57,Andover,Maine ANDOVER,MaineDr.TeresaTerriRoyer PassedawayonSunday,Aug.15,2010,peacefully atherhomeinAndover.ShewasbornMarch25, 1953,inLewisburg,Pa.,adaughterofRusselland LouiseRoyer,ofNewColumbia,Pa. ShegraduatedfromLewisburgHighSchool,Class of1971andreceivedherDoctorateofOsteopathic Medicine,DesMoinesUniversityinIowain1979. Dr.MacKnightpracticedmedicineinHollywood, Fla.,Seattle,Wash.,Negley,Ohio,andBeaver,Pa., beforemovingtoMainein1990.Shepracticed medicineinRumforduntilbeingdisabledby NeurologicalLymeDisease.Shewasoneofthe foundersoftheInternationalLymeandAssociated DiseaseSocietyandthesocietysfirstpresidentin 1999.Asalecturerandauthor,shestrivedtohelp themedicalcommunityandthepublicto recognize,treatandpreventLymeDisease.Her desiretohelpothersalsotookhertoBarrow,Ala.; AmericanSamoaandintoruralareaswhereshe wasabletohelpthosewithoutaccesstomedical care. http://www.lymedisease.org/news/lyme_disease_ views/531.html KarlMcManus KarlwasbittenbyatickinJuly2007onSydneys NorthernBeaches.Aweeklaterhedevelopedflu likesymptomsbut,duetoalackofknowledge aboutLymediseaseinAustralia,thetelltalesigns andpotentialseriousnessofthetickbitewere overlooked.Karlpassedawaysuddenlyon14July 2010.Hisdeclineanddeathwasduetoarefusalby themedicalsystemtoaccepthehadLymedisease andtreathimaccordingly.Hedidnotwant anybodytosufferlikehimeveragain.Karlsfull 265

storycanbefoundintheKarlsStorysectionofthis site.http://www.karlmcmanusfoundation.org.au/ PatriciaMyersSullivan Age50,diedWednesdaySeptember28,2011at herhomeinAshburn,VA.Sheissurvivedbyher husbandJamesR.SullivanandchildrenBenjamin andSamuelSullivan.Sheisalsosurvivedbyher fatherWilliamE.Myers,hersisterPamelaLindsay andbrotherWilliamMyers,allofWestminster, MD.Patriciawasdevotedtoraisinghertwo teenagesons.Shewasanavidreader,andlovedto playscrabblewithclosefriends.Familywillreceive friendsfrom6to8p.m.onMondayOctober3, 2011atAdamsGreenFuneralHome,721EldenSt., Herndon,VAwhereserviceswillbeheldTuesday October4at11a.m.IntermentatUnionCemetery, Leesburg,VA.Onlinecondolencesmaybemadeat adamsgreen.com.Inlieuofflowers,donations maybemadetoGalileeUnitedMethodistChurch, Sterling,VA. BillNichols BorninAnnArbor,MichiganonJune10,1949.He receivedhisPhDinChemistryfromUCSDin1985, wherehecontinuedhiscareerinresearch chemistry.Helovedswimmingandwillbe rememberedasatruefriendandafinescientist. Billstruggledbravelywiththemostsevere complicationsofLyme,butwaskindandgentleto theend. NicholstookhisownlifeApril12,2000,aftera twelveyearbattlewithLymedisease. GaryNorbut March5,2008 Teresacalledthismorning. ItiswithgreatsadnessthatIbringthenewsof Gary'spassingearlythismorningaround3:45am EST. Garytrulywasafunnyguy,alwaysjoking,telling hisstoriesofhisdogsandgardening,andofcourse couldgetsomewhatirritatedatallofus.That's whatmadehimsospecial.

KnowthatevenwhenGaryfoundoutabouthisEC cancer,hewasdeterminedtobeatitandfromMay 2007untilthismorning,hesuredamntried. Howeverduringthislastmonthofhislifehe startedtosuffer,soIamgreatfultoourLordhe tookhimsohewouldnolongersufferandheisat peacewithoutanypain. Allourprayersshouldbedirectedtohisfamily duringtheirtimeofsorrowandgrief. Iwillpostthefuneralarrangementsassoonas Teresaletsmeknowprobablysometimelater today. Garymydearestfriend,RestinPeaceandknow youweretrulycaredaboutfromallofus.Iknow youcanhearmebehappynow! Love,Diane RichardOlney Richardwasoneofthefirstfoodwritersto introducethebeautyofsimpleFrenchcountry cookingtoAmericanreaderswithmorethan35 booksonfoodandwine.BorninMarathon,Iowa, OlneyattendedtheUniversityofIowabefore studyingpaintingattheBrooklynMuseumArt School.HemovedtoFrancein1951attheageof 24,whereheledalifeofsimpleelegance surroundedbyolivetrees. OlneydiedAugust3,1999,athishome,followinga twoyearfightwithLymedisease. NancyLowerOrcutt April12,1942June28,2011 Age69,ofSarasota,formerlyofOakIsland,N.C. Survivorsincludeherhusband,Bill;sons,Davidof Bethesda,Md.,JamesofMontgomery,N.Y.,Daniel ofSilverSpring,Md.;herbrother,DavidLowerof Syracuse,N.Y.andsixgrandchildren. AmandaReese Amandawascommittedtoservingothersduring heryounglife.AgraduateofIllinoisState UniversityandformerYMCAcampcounselor,she alsoservedasavolunteerwithAmeriCorps. AmandaledateamprovidingassistancetoFEMA inMississippifollowingHurricaneKatrina.Shealso 266

volunteeredfortheNatureConservancyseffortto preservetheFloridaEverglades. ReesediedNovember19,2006fromanenlarged heartstemmingfromcomplicationsofLyme disease. EveryonewhogottoknowherlovedherCarole Reese ThomasRoberts ThomasgrewupinPlainview,Texas.Hewasa formerUSMarineenrolledintheCollegeofVisual andPerformingArtsatTexasTechUniversity.He wasverydedicatedtohiswork,familyandfriends. RobertstookhisownlifeMarch2,2006,aftera longbattlewithLymedisease. HewillbemissedbyeveryoneinPlainview.He wasavibrantlifelovingyoungman.LisaKersh KarenJohnsonRose AcomoderatorforLymeInfosince2002,an internetgroupdevotedtodisseminatingaccurate informationregardingtickborneillnesses.Bothshe andherhusband,James,wereveryactivewith supportandadvocacytotheLymecommunity.All whoknewRosefoundherasawarmandkind individual,alwaysdedicatedtoherfriendsand family. RosediedApril18,2007,followingalongbattle withLymedisease. Today,andforyearstocome,wewillallhaveone thingincommonabrokenheartbecauseweve lostourRose.Idoknow,however,theworkRose accomplishedfortheLymeCommunitywillliveon forever.Herdedicationtoourcausehassaved manylivesandmademanylivesmuchbetter. LucyBarnes JosephSparacio September24,1952October14,2011 Hiswife,AnnRossSparacio,alsosuffersfromLyme disease.Josephworkedforoveradecadeatthe NewYorkCityPoliceDepartment.

JimSazani BornSeptember5,1943,inNewYork.Heattended TexasA&MUniversityandlaterservedat VandenbergAirForceBasewiththeAirForce.He wasanengineerfor33yearsandwasactivein youthsportsprogramsandcoachedeverything frombasketball,baseballandfootballtogirls softball.Jimbredandtraineddrivinghorsesfor18 years,butafterLymedisease,hewasconfinedtoa wheelchair. SazanidiedApril12,2003inLompocHospitalof complicationsduetoafiveyearbattlewithLyme disease. Henevergaveup.Hewashopefulhewouldget through;therewasalwayssomethinggoingonin lifethatkepthimalive.JudiSazani AdecoratedVietnamveteran,BobSchneider residedonhissmallfarminEvanston,Indianaafter retiringfromEvanstonStateHospitalasasocial worker.Hewashospitalizedformorethan25days beforehisdeathwithmultipleorganand respiratoryfailure. SchneiderdiedAugust2,2006fromcomplications ofRockyMountainSpottedFeverandEhrlichiosis. ObituarypublishedintheCourierPresson 8/20/2006. StevePhilipShears StevewasborntoRayandShirleyShearsonDec.1, 1958,anddiedDec.22,2011.Hewasraisedin FortunaandattendedFortunaUnionHighSchool. In1976hetookasummerjobontheChristieII,a commercialsalmonboat,andfoundwhatwasto becomehislifecareer.Hecrewedonanumberof othervessels,includingtheAmyJune,Aquarius, LuckyStar,andMissHeather,thenbecamecaptain oftheCandyBin1991.Thisimportantpartofhis lifecontinueduntiltheboatwasboughtoutbythe governmentin2003.Stevetriedotherbusiness venturesandjobs.Hewashappy,however,to returntotheseawhentherightfishingjob appeared.Inadditiontowork,hededicated himselftohelpingothersanddidalmostanything towardthatgoal.HelovedGodandwasgratefulto 267

be24yearscleanandsober.Hespentcountless hourssharingwithothersandcarryingthe message.Hisseeminglyendlessenergy,which oftenkepthiminconstantmotion,turnedinto patienceashelistenedtofriendsandguidedthem withhisgift.LymeDiseaseinterruptedhiscareer andultimatelyhislife.Heissurvivedbyhis treasuredchildren,JessicaandElijah;hisbrothers GregandDoug;andafellowshipthatmournshim deeply.AmemorialservicewillbeheldatTrinity BaptistChurch,2450Alliance,inArcataat2p.m. Friday,Jan.6,2012.Peoplearewelcometobring cookiesorotherlightrefreshments.Pleasesignthe guestbookatwww.TimesStandard.com,click obits. VincentSota SotawasaFireRescueEngineerandanEmergency MedicalTechnician.Afterseeingmorethanfifteen physicians,Vincentwasfinallyproperlydiagnosed withLymedisease,butbythattime,hewas completelydebilitated.Bedriddenandunableto speak,hiswifeofelevenyears,Mary,faithfully stayedbyhisside,maintaininghopeuntiltheend. SotadiedJuly4,2002,afteralongbattlewithALS secondarytoLymedisease. ObituarypublishedintheTimesPublishing Companyon7/6/2002. OscarS.Strickland Age73,ofCanton,passedawayonWednesday, June22,2011inAultmanHospital.Hewasbornin Glenn,GAonMarch17,1938tothelateBaltimore andLolaStrickland.Oscarproudlyservedinthe UnitedStatesAirForcefrom19561960.Heretired fromRepublicSteelin1999,following36yearsof employment.HewasamemberofUnionBaptist Churchwhereheproudlyservedasanusher.Oscar wasamemberofColmanLodge#13andwas PatronofLucileEsterChapter#14.Inadditionto hisparents,hewasprecededindeathbythree brothers,B.G.,JesseC.andAlbertStrickland;anda sister,OlphiaBoykins.Survivorsincludehisloving wife,ElizabethStrickland;twosons,Larryand DwightStricklandofLaGrange,GA;hisdaughter, MargaretGreenofFranklin,GA;10grandchildren;

18greatgrandchildren;threebrothers,Charlie Frank(Geraldine)StricklandofFranklin,GA,Horace StricklandofDetroit,MIandBobby(Georgia) StricklandofCanton,OH;andtwosisters,Glema BradfieldofCleveland,OHandBerniceSmithof Atlanta,GA.FuneralserviceswillbeMondayat 11aminUnionBaptistChurch,413CorneliaAve. NE,withPastorShermanMartinofficiating.Burial willfollowinNorthLawnCemetery.Callinghours willbeSundayfrom35pmintheReedFuneral HomeCantonChapel,andonehourpriortothe servicefrom1011amonMondayinthechurch.In lieuofflowers,memorialdonationsmaybemade totheUnionBaptistChurchBuildingFund.The familywouldliketothankthestaffattheAultman HospitalMICU.AspecialthankyoutoRoslynMack andGeorgiaStricklandfortheirloveandsupport duringthesedifficultdays. ErinElizabethSpillers Beloveddaughter,sister,aunt,andfriendtomany, ErinSpillerswasbornJune21,1980inRapidCity, SD.Shediedsuddenlyatherresidenceon Thursday,April28,2011fromcomplicationsof chronicLymedisease.Cremationwilltakeplaceat SouthernMemorialFuneralHomeandaMemorial MasswillbeheldatOurLadyQueenofMercy Church,Montgomery,AL,onWednesday,May4, 2011at9:30a.m. ErinlovedAlabamafootball,gardening,dancing, yoga,music,animals,andspendingtimewithher manyfriends.Shesmiledthroughherpainandwas alwaysreadytolendahandoranencouraging wordtoeveryoneshemet.Shewillbedeeply missedbyeveryonesheknew.Thoughheryearson Earthwerebrief,shelivedthemtothefullest, bringingjoytoallwhocrossedherpath.Shewas beautifulontheinsideandout,withasmilethat sparkled,ageneroussenseofhumor,andadeep capacityforcompassionandlove. Sheissurvivedbyhermotherandstepfather,Dr. MichaelandAnneMarieGormleyofMontgomery, AL;fatherandstepmother,FrankandKimberlee Spillers,ofAtlantic,IA;brother,MickGormley,of Montgomery,AL;sister,JessicaWinum(Jarret)of Stanley,NY;grandmother,PhyllisKertzman,of 268

RapidCity,SD;aunts,uncles,cousins,nephewsand nieces. Inlieuofflowers,contributionscanbemadeinher memorytotheLymeandTickBorneDiseases ResearchCenter,ColumbiaUniversity,Att:Barbara Strobino,PhD,1051,RiversideDrive,Unit69,New York,NewYork10032orat https://giving.columbia.edu/giveonline/?schoolstyl e=56437 CaroleTegnander CarolebornandraisedinValleyStream,NewYork, wasfulloflife.OnceshewasdiagnosedwithLyme disease,shecofoundedtheLongIslandLyme Associationwhereshehelpedmanybyrunning supportgroupmeetings,givingeducational seminarsandtestifyingbeforetheUSSenateand variousothercommitteestohelpraiseawareness. Shewasanavidanimallover,aloyalandloving wife,ajoyfulandcaringfriend,anddevoted motherandgrandmother. TegnanderdiedFebruary17,2006followingalong battlewithovariancancersecondarytoLyme disease. PeoplewhoknewCarolesawshehadaneasy smile,wasalwaysupbeatregardlessofthepain sheenduredfromtwocrushingillnesses.Shelived herlifebythemotto,NEVERQUIT.Family statement ObituarypublishedintheTimesHeraldRecordon 2/19/2006. ChristopherThomas AresidentofAnnapolis,Marylandandasound engineerforfeaturefilms,televisionshowsand musicvideos.HewasagraduateofMontgomery Collegeandownedthefirm,CPTSoundServices Inc.Christopherenjoyedbothhistoryandtravel, andhiscareerallowedhimtodelveintoboth passions.In1990,hisworkearnedaCapitalRegion EmmyAward.ThomasdiedMay3,2006atAnne ArundelMedicalCenter,fromcomplicationsofa fiveyearbattlewithLymedisease.Obituary publishedinTheWashingtonPoston5/9/2006.

JennyUmpress JennycontractedLymediseasewhenshewas15 yearsold,andspenttheremainderofherlife fightingtofindthestrengthtoovercomenumerous obstaclesandhardships.Thediseaselefther bedriddenandinterriblepain.Italsocaused completeamnesiafromwhichshenever recovered.Thephysicaldevastationwasexceeded onlybytheemotionalturmoilplacedonherby misinformedandunsympatheticphysicianswho didnotunderstandthenatureofherillness.Still, hergoalwastotryandhelpotherpatientsfrom experiencingthesamefate. UmpressdiedAugust26,1994,afterasixyear battlewithLymedisease. CaroleAVanDoorne CRYSTALLAKECaroleA.VanDoorn,43,ofCrystal Lake,passedawayFeb.12,2011,athome surroundedbyfamilyafteracourageousbattle withALS. ShewasbornSept.21,1967. Sheissurvivedbyherbelovedhusbandof18years, DeanVanDoorn;herlovingchildren,Rachel, JosephandElizabeth;hercherishedparents,Bruno andPatriciaGrund;herdearbrother,Dan (Heather)Grund;hermotherinlaw,SharonVan Doorn;herfatherinlaw,BillVanDoorn;hersister inlaw.Nicole(Brad)Schwan;herbrotherinlaw, Dave(Nancy)VanDoorn;andmanydearfriends. Thevisitationwillbefrom2p.m.until8p.m. Monday,Feb.14,atDavenportFamilyFuneral Home,419E.TerraCottaAve.(Route176),Crystal Lake.Thevisitationwillcontinuefrom10a.m. Tuesday,Feb.15,untilthe11a.m.serviceat WillowCreekCommunityChurch,220Exchange Drive,CrystalLake.Intermentwillbeprivate.Inlieu offlowers,donationsmaybemadetotheCarole VanDoornMemorialFund,HomestateBank,P.O. Box1738,CrystalLake,IL60039. Onlinecondolencesmaybeleftforthefamilyat http://www.davenportfamily.com/. 269

ColonelBryceH.Wagner BornOctober10,1943inLenoir,NorthCarolina, BryceWagnerreceivedhisMastersDegreeat CentralMichiganin1984andwasaWarCollege graduate.Afterserving26yearsintheUnited StatesArmy,heretiredafullmilitarycolonel. WagnerdiedJune7,2006,afteralongbattlewith Lymedisease. ObituarypublishedintheTopekaCapitalJournal on6/13/2006 LeslieRaeWermers 7/7/196711/2/2008 TheLymecommunityhaslostanimportanthero andfriendandsodidI.LeslieWermers,41,died fromheartfailureinhersleeponNovember2nd. ItshardtoimagineLesliesheartgivingout, becauseforanyonewhoknewhershewasall heart.Adearfriendtosomanyandatireless workeronbehalfoftheMinnesotaandnational Lymecommunities,Lesliegaveeverythingshehad tohelpotherswhoweresick.Andeverythingshe hadwasanabundantreserveofloveandsupport evenasherownhealthwaned. http://lymebook.com/blog/news/lesliewermers tracieschisselminnesotalymefighters/ BetseyWhite WHITE,ELIZABETHA.ElizabethA.White,age73,of Trumbull,daughterofCharlesJ.WhiteandHelen CampbellWhite,diedonSaturday,January14, 2012.ShewasbornonSeptember6,1938inSt. VincentsHospital,Bridgeport,CT.ALauraltonLifer shegraduatedin1956.Fromherparents,she inheritedagenerosityofspirit,anIrishcando happyspirit,quicksenseofhumor,giftofgab,love ofpoliticsandsocializing.Shelovedsummer vacationsatLakeWinnipesaukeewithfamilyand friendsswimming,diving,rowingwiththeother kidswasalwayswonderful.Childhoodloves includedballet/pointe,bikingandswimming.A chartersubscribertoLongWharfTheater,her morerecentretirementinterestsincluded MetropolitanOperasimulcastHDpresentations, JamesJoycesUlysses/BloomsdayeventatUCONN. Anaptdescriptionwasgivenbyherfelloweighth gradeclassmateVickiFoderatagraduation

exerciseLaughing,talking,fulloffunshehasa smileforeveryone. Followingathirdgenerationfamilytraditionshe enteredthefieldofnursing,graduatingfrom BostonCollegeSchoolofNursing,cumlaudein 1960withaBachelorofScience.Afterpursuingan interestincommunitymentalhealth/psychiatry, sheenteredtheUniversityofPennsylvania PsychiatricNursingProgramin1968whereshewas inductedintoSigmaThetaTau,nationalhonor societybasedonfirstsemesteracademics,earning aMasterofScienceinNursingin1970.Continuing herclinicaltrainingsheenrolledintheFamily TrainingProgramattheCenterforFamilyTherapy, whilealsobeingenrolledinVeterans AdministrationAssistantChiefNurseTraineeship. In1998,shecompletedher2yearpostmasters familynursepractitionerprogramatFairfield University.MissWhiteholdsANCCcertificationsin FamilyNursePracticeandPsychiatricClinical Specialist.ShealsoheldtheANCCcertificationin NursingAdministration.Hernursingexperiences haveincludedclinical,psychiatric,publichealth, administrativeandteaching.Herfirstlovehas alwaysbeendirectclinicaltreatment.Herearly mentorsprovidedherwithexcellentexposureto innovativetreatmentsaimedatimprovingthe qualityofpatientslives. NoonelovedafunddrivemorethanBetsey.She lovedsearchingforbargainsnegotiatingwithfood storesforthebestpricesonbulkpurchasesforthe ThanksgivingdriveatLincolnBassettSchool.She hadawonderfullygenerousteamthatwidened witheachyear.ThegroundscrewfromtheWest HavenVAHospitalprovidedthetruck transportationandthestaffwereavailableto collectanddistributethegiftbasketstoidentified familiesingreatneed.Thatwasonlythebeginning oftheholidaydonations.Itenergizedthe Christmasdonationforthefourthandfifthgraders. Thedrivesstartedoutasanursingprojectand expandedthroughoutthehospitalasanannual eventthatwasengagedbyallthehospitalservices. Herteacherfriendsworkedwiththesecond gradersfromDanielsFarmSchoolinTrumbullwho madeChristmasdrawingdecorationsforeach 270

namedchildsgiftbag.TheMonroeTrailTroop generouslywrappedover1,000giftseachyear.In additiontowarmwinterclothes,atoy,andcandy, Betseywasinstrumentalinprocuringwatchesfor eachofthechildrenfromTimex.Thegiftswere deliveredbySantastruck(FromtheVA)andagala distributioncompletewithmusicandSantatook placeattheschool.Eachindividualchildwascalled uptoreceivetheirgiftfromSanta.Itmadethem feelsospecial.Betseyhadagangofdogooders, staffmembers,salespeople,bargainstoreowners whowerealwaysonthelookoutforbargainsyear round.Thesedriveswouldneverhavebeen successfulorhavebeenpossiblewithoutthe wonderstaffoftheWHVA.Betseywasknownfor hergenerosityofspiritandwasalwayswillingto lendahelpinghand.Forthelasttenyearsofher life,shehasdedicatedherselftothecauseofLyme Disease. Shehasbeendeterminednottoletthiscondition leadtodysfunctioninherlife.Wheneverpossible, shewasavailabletootherpatientsofferingsupport andencouragement.Inanattempttolearnas muchaspossible,Ms.Whiteengrossedherselfin currentLymemedicalliterature/publications, attendedInternationalLymeandAssociatedTick BorneDiseases,andsupportedtheUniversityof NewHavensresearchandannualsymposiums. Betseywouldliketoexpresshergratitudetoher specialfriendMarilynMcCarthywhohasbeenat hersidethroughoutthemostacutelifethreatening stagesofherillnessandtoSusanFalkowski,her goddaughterwhoduringadifficultperiodinher ownlifeassumedresponsibilityforhealthcare advocateandMaryLouSheehanwhowaspresent everydayfightingtheiceandsnowoftheworst wintertofeedTobiethecat. TravisWilson TraviswasbornDecember29,1982inOlympia, Washington.TravisattendedAustinCommunity Collegeandhadjustfoundfinancialbackingto startanewbusinessoffixingcomputers.Hewasan avidreaderandwriterandwrotemanypoems.He becameacertifiedpharmacytechnicianin2003, usinghisknowledgeofLymeandMorgellonsto

helpotherpatients.Traviswasverysickformuch ofhislifebutfoughtbravelythroughitall. WilsondiedApril23,2006,fromcomplicationsof LymediseaseandMorgellonsdisease. ObituarypublishedinHillCountryNewson 5/3/2006. JayThomasWolfenden 56,ofWestminster,diedWednesday,Aug.17, 2011,atCarrollHospitalCenter.BornJan.12,1955, inBaltimore,hewasthesonofthelateJohn ThomasandShirleyLeachWolfenden.Heworked atShoppersintheseafooddepartment.Hewasan EagleScoutwithTroopNo.56andwasco coordinatoroftheCentralMarylandLymeDisease SupportGroup.Healsowasanavidfisherman, Ravensfan,andenjoyedcooking.Survivingisa sister,RobinAnnWolfenden,ofWestminster.A gravesideservicewillbeheldat10a.m.Thursday atZionUnitedMethodistChurchCemetery,2716 OldWashingtonRoad,Westminster,withtheRev. MarianneSicklesGrabowskiofficiating.Memorial contributionsmaybesenttoCarrollHospice,292 StonerAve.,Westminster,MD21157. ArrangementsarebyPrittsFuneralHome&Chapel inWestminster.Signthisguestbookonlineat www.carrollcountytimes.com DonnaMarieZakszeski Zak,ofBeverlypassedawayFridayattheageof 50,afterbravelybattlingLymediseaseandBreast Cancerforseveralchallengingyears.Donnawasa graduateofBurlingtonCityHS,classof78.She wentontobecomeaRegisteredNurse,while settlinginMaine.Donnalovedtoread,learnnew things,garden,theoceanandpracticingyoga. Mostofall,shelovedherfamily.Sheissurvivedby herchildren;JustinSpencer(wifeJulie),Jennifer (husbandThomasDunn),andJordanSpencer(s/o ChristopherBlake),theirfatherRickSpencerandby hersiblings,Charles(wifeSharon),Scott(wife Linda)andLyndaZakszeski(s/oAndrewNewsome), andPatriciaKramer(husbandKirk)andnowrests peacefullywithherfatherCharles,mother EleanorEllieandbrotherJohnJack(husbandto PatriciaR.Zakszeski).Shewasextremelyproudof 271

hergrandchildren;Cody,Chloe,Max,Caseyand Zak(dueinNovember).Hermanyniecesand nephews,likeallwhoknewher,lovedandadmired Donnaforthewonderfulpersonandamazing womanthatshewas.Donnacanberemembered mostforherbreathtakingsmileandinfectious laugh.Shewasbelovedbythoseclosetoherand willbegreatlymissed. LoriHallSteele Lori,whodiedWednesdayNov.19,2008,reflected onthosewordsofteninher44yearsandtriedto liveherlifethatway:withoutaformulaicapproach toitandundauntedbythefateweallface.A yearlongbattlewithamysteriousillnessandher subsequentdeathdidlittletodimherhugeloveof life,dampenherinfectiouslaugh,detractfromher giftsasawonderfulwriterordiminishheraffection forhermanyfriends,herfamilyandherbeloved son,Jackson. LoriwasbornSept.1,1964,inFlint.Shegraduated in1982fromDavisonHighSchoolandattended MichiganStateUniversitywhereherbuddingtalent landedheronthestaffoftheMichiganStateNews. ShedevelopedhercraftcoveringtheMichigan Legislature,theweddingofPrinceAndrewand SarahFergusoninLondonandSouthAfricanleader NelsonMandelasinitialvisittotheU.S. AftergraduatingfromMSUin1986,Loriworkedat theCenterforInvestigativeReportinginSan Francisco.ShereturnedtoMichigantoworkatthe AlbionRecorderandthentheTraverseCityRecord Eaglefrom1989to1993.Afterlosingherdear sisterMarciina1995autoaccident,Lorilaunched asuccessfulawardwinningfreelancecareer, includingeditingMichaelMooresbookDude, WheresMyCountry?andpenningherown, SweetandSnappyCherryDrinks.Shealsowrote essaysforpublicationsrangingfromthe WashingtonPosttoSmartMoneyandWomans Day. Besidesreadingandwriting,Lorilovedtotravel. Thatpassionledhertopointsfarandwide, includingtripstoAustralia,Mexico,theUnited Kingdom,France,theCzechRepublicand48ofthe

50UnitedStates.Oneofherfavoritetravelswasto DunveganCastleontheIsleofSkye,Scotland, ancestralhomelandofclanMcLeod. LorimarriedBrianSteeleonFeb.11,1989,and gavebirthtohergreatestcreation,sonJackson Gabriel,onAug.6,2001.Sheissurvivedbyandwill begreatlymissedbyboth. OthersurvivorsincludemotherShannonK.Hall, whoseselflessdevotiontoherdaughterallowed Loritoenjoyeverylastmomentofherlife;beloved siblingsDavidLeeHallandTonyaManning(and sonsTylerandTrevorManning)ofCedar;Timothy GreyHall(anddaughter,ZoeMilagroHall)and BreanneRussellofTraverseCity;andTeresa Sullivan(anddaughters,AliaWarnerandMegan Sullivan)ofWilliamston;auntsPenelope(Russell) Neimann,MaurineMcLeod,Tina(Mike)Hood; unclesJamieLytleandChris(Tracy)Lytle;uncle Gerald(Alice)Hall;favoritecousinAndreaUnsel andherpartner,NancyPenny,aswellasnumerous othercousins,family,friends,andanetworkof writersandartistswhospannedtheglobe.Shewas predeceasedbyherfather,DonaldLeeHall,sister, MarciLynnHallandbrotherinlawThierryCoulet, ofSte.Maxime,France. Throughoutthispastyear,somanypeoplecame forwardtohelpLoriineverypossibleimaginable way.Shecalledtheseherwhitelightpeople, includingbrothersDaveandTim,TonyaManning, BreanneRussell,MaurineMcLeodandfamily friendsPhilClyneandKrisHainswhoworked tirelesslyonherbehalf.Thefamilyexpressestheir deepestgratitude. Inlieuofflowers,memorialsmaybedirectedtoa fundestablishedinthenameofJacksonGabriel SteeleincareofNorthwesternBankinTraverse City. VisitationwilltakeplaceonMondayevening,Nov. 24,from5to8p.m.atReynoldsJonkhoffFuneral HomeinTraverseCity.An11a.m.memorialservice isplannedforTuesday,Nov.25,atBaypointe CommunityChurchinTraverseCity. 272

USPoliticalFiguresDiagnosedwithLymeDisease
BerkleyBedell,formerUSCongressman(DIA) PhilipNorman"Phil"BredesenJr.,formerTNGovernor GeorgeW.Bush,formerUSPresident ChrisHarris,TXStateSenator(RArlington) GlennMcConnell,SCSenatePresident GeorgeE.Pataki,formerNYGovernor MerleH.Phillips,retiredPAHousemember ToddRock,PAStateRepresentative CharlesSchumer,Senator(DNY) ChristieToddWhitman,formerNJGovernor,former AdministratoroftheEnvironmentalProtectionAgency JoeWilson,USCongressman(RSC)

BrookeLandau,TodayShowreporter JohnLurie,actor,musician,painter,directorandproducer IreneMcGee,formercastmemberofMTV's"TheRealWorld" TaraMcMenamy,threetimeAllAmericancrosscountryskier RayMears,BritishSurvivalguru JoeMeeko,Mr.Universe/Mr.America/Mr.USA(diedatage48 ofLymediseasein2009) DavidMennes,MMAfighter DebbieMorgan,actress KrissyNordhoff,Christiansinger,songwriter ChuckNorris,hiswifeGena,andtheirchildren CarrieNye,DickCavett'swife PamelaOKane,triathlete ChelseaO'Donnell,daughterofcomedianRosieO'Donnell Lembitpik,formerMemberofBritishParliament GaryPlayer,progolfer ParkerPosey,actress ChristieRampone,USAwomen'ssoccer KevinSalem,musician PeterSarsgaard,actor TomSeaver,formerNewYorkMetspitcher PeteSeeger,folksingerandactivist WyattSexton,NCAAquarterbackfortheFLStateSeminoles JamieLynnSigler,actress TraceySilver,actress TimSimpson,progolfer MarthaStewart BenStiller,actor,andhissonQuinlinDempseyStiller SamanthaStosur,tennispro AmyTan,author Thala,Latinsingerandactress RandyTravis,musician ChristyTurlington,model DianeVarsi,actress AliceWalker,PulitzerPrizewinningauthor PamelaWeintraub,author/sciencewriter RebeccaWells,author CodyWillard,FoxNewsanchor LeilaZackrison,MD MichaelZaslow,actor

PublicFiguresDiagnosedwithLymeDisease
JaneAlexander,actress/author AlecBaldwin,actor LisaBevill,Christiansinger ChristieBrinkley,model JosephBurrascano,MD,Lymediseasetreatmentpioneer TomCarson,formerManitobaDeputyMinisterofHealth NenehCherry,singer BillChinnock,musician(Lymedrovehimtosuicidein2007) MelClarke,archerychampion BrandilynCollins,suspencenovelist MaryLynnCurrier,marathoner JoshuaDaniels,NCAAbasketballplayer RyanDunn,ofMTVsJackAssseries NickEsasky,formerbaseballplayer PerryFields,trackandfieldathlete MichaelJ.Fox,actor JulieFurtado,professionalcyclist RichardGere,actor DarylHall,musician PeteHarnisch,formerMajorLeagueBaseballpitcher AllyHilfiger,daughteroffashiondesignerTommyHilfiger RobHill,TargetChipGanassiRacingteamcrewchief AshleyCooperKerns,daughterofactressJoannaKerns RobKress,formerDetroitweathercaster,WXYZ WandaKurdziel,hiker/backpacker

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Thisdocumentwascreatedanddistributedwith thehelpof: BambiAlbert AlanBurdge JoyBurdge TimothyGrey TammyHildebrand LisaHilton JWJ ToddMeese NinaMoore LucretiaPerilli KathrynRichards BethErinWarnick JessicaWheeler Andallwhobravelyvoicedtheirconcernsthrough theirincrediblypowerful,meaningfuland knowledgeablecomments.

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