Hope Beyond Lyme: The First Year

Cover Photo: Blowin’ in the wind, 2012. Brad Wieland, Used with permission. http://bradwieland366.wordpress.com/2012/05/10/may-9-blowin-in-the-wind/

Cover Design: Angie at: http://fiverr.com/pro_ebookcovers

September 27, 2012 Photo: Playing in the Rain. Free wallpaper from: http://abstract.desktopnexus.com/wallpaper/623009/

December 14, 2012: Quote from Sarah Young reprinted by permission.  Jesus Calling, Sarah Young, 2004, Thomas Nelson Inc. Nashville, Tennessee.  All rights reserved.

January 7, 2013: Free comic strip from Jim Hunt Illustrations on Facebook, extracted August 25, 2013 at: http://www.facebook.com/huntillustrations.

February 7, 2013: Dave McCarrell column, February 13, 2013. Pacific Garden Mission (PGM) Newsletter. Used with permission per Dave Fuller at PGM per phone call

August 30, 2013.

July 1, 2013: Permission to reprint the quote of Patrick Klein from the June 28, 2013 issue of the Vision Beyond Borders newsletter was received August 19, 2013 from: Dyann Romeijn, Public Relations, Vision Beyond Borders.

July 28, 2013: Permission to reprint the quote of Patrick Klein from the July 27, 2013 Vision Beyond Borders newsletter was received August 19, 2013 from Dyann Romeijn, Public Relations, Vision Beyond Borders.

Scriptures taken from the Holy Bible, New International Version®, NIV®. Copyright © 1973, 1978, 1984, 2011 by Biblica, Inc.™ Used by permission of Zondervan. All rights reserved worldwide. http://www.zondervan.com The NIV and New International Version are trademarks registered in the United States Patent and Trademark Office by Biblica, Inc.™

A special thank you goes out to the reviewers of this manuscript: Roberta Dougherty, Steven Horney, and Amanda Lannon. (Follow Amanda at http://www.amandalannon.wordpress.com)

Disclaimer

I'm writing this eBook to share my story and experience, to instill hope, and for general informational purposes only. Hope Beyond Lyme: The First Year is not intended as, nor should it constitute or be considered a substitute for: professional medical, psychological, legal, or financial advice. Please seek out appropriate professionals for help when needed.

Smashwords Edition, License Notes

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Before and After

About Julie

June 25, 2012

My story began after kayaking in the Cedarville Reservoir in Leo, Indiana, USA, on October 11, 2011.  What a great time I had with my husband, Steve, and the Fort Wayne Indiana Kayaking Group, including enjoyment of a fellow paddler’s fabulous cookies afterwards.  The only problem with our paddle that night was a few sanitary mistakes I made that increased my exposure to blue green algae in the water. A devastating bout of viral hepatitis, trip to the emergency room, and over a month of wretched illness followed.  The Lord healed me enough to enjoy a family trip over Thanksgiving weekend then I got sicker again thereafter and it never really abated.

By January of 2012, my doctor was looking for other causes of the ongoing illness.  After extensive lab testing, he diagnosed Chronic or Late Stage Lyme Disease largely by exclusion and clinical presentation; I may have had it for years, depleting my immune system!  (Follow the link or see About Lyme after this chapter for more information.) Treatment for Lyme disease began with antibiotics and immediately I was horribly sick.  By March I had stopped working to completely focus on treatment that included Rife technology, low dose antibiotics, compounded medications, specific herbal remedies, and pharmaceutical grade supplements. 

The treatment process continued until a year later in January of 2013 when Steve and I learned that the mold in our home was probably contributing to neurological complications. We fast-tracked the mold remediation of our home to complete everything within three months so I could continue to live there!  I’m back at home now while the journey of recovery continues to be difficult two years later. I recognize the many cool little blessings along the way that have served to grow my faith in the Lord, no matter what will happen to me!

The Lord is my Heavenly Husband, awake with me in the middle of the night as my dear husband sleeps and in the light of the day when Steve is at work. This is an incredible comfort. At some other life-changing points in the past 10 years, the Lord gave me these promises and truths from His Word:

¹¹ For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." (Jeremiah 29)

³⁸ For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers,³⁹ neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. (Romans 8)

I know that the suffering during this part of my life will not be wasted.  There is purpose and meaning which often goes beyond what I can see. I hope that you will see how I am grateful to understand this truth in the pages of Hope Beyond Lyme: The First Year. The Lord cares for me, comforts me in my time of need, and one day I will see how this illness weaves together with all the other threads of my life.  These threads will create a beautiful tapestry that will one day become the fulfillment of all my hopes and dreams whether it comes this month or in my last breath.  And as I wrote on a hallway wall mural in my home awhile back, I know that I will say on that day, I would not have wanted it any other way!

I originally wrote many of these short vignettes as an online blog to help keep me sane in the beginning of navigating the waters of life through and beyond Chronic Lyme disease, fibromyalgia and Chronic Inflammatory Response Syndrome (also known as a genetic-based mold illness).  The blog became a useful tool to keep my eyes fixed on Christ and not on the negative stuff of sickness, loss, isolation, and despair that can come with a long term illness.  For simplicity sake, most of the writings refer to Lyme disease and its co-infections as the main player, so to speak.

The Lord has provided for my needs during this time and lovingly directed me through the spiritual leadership of my husband, Steve.  He has also brought Steve and me closer to each other and to the Lord, Jesus Christ.  Then when the isolation of this serious illness got unbearable He brought me a local Lyme Support Group, new friends, meaningful ways to connect with others online including my online blog, Hope Beyond Lyme, and some writing projects!  There's even a new hobby to keep my hands busy and mind occupied:  Trinity Jewelry by Design.

With my faith in Jesus Christ as my foundation, I continue to seek Him and His will this day and always.  I pray for healing. I am also honored to share with you the amazing discoveries of the first year of blogging this journey online, updated with some special features for you, Gentle Reader.  Join me on a meaningful path of discovery and thanks so much for your support!

From the day this eBook project launched and going forward, I offer this prayer and dedication:

Lord, be my Guide, my hope, peace, and joy.  May I reflect You and Your Will for me.  May others battling serious illness also find hope and peace in the shadow of Your wings.  In Jesus's name, Amen. Just Julie

About Lyme disease

According to the latest research at the International Lyme and Associated Diseases Society (ILADS), Lyme disease is an illness generally contracted in the United States and throughout the world from the bite of a tick. Lyme disease is best defined as a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Fewer than 50% of patients with Lyme disease recall a tick bite or any bull’s-eye type of rash. (Recent research suggests other forms of transmission including bites from other insects.) Atypical forms of this rash are seen far more commonly. It is important to know that the bull’s-eye rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of therapy. Also note that formal testing is unreliable and can miss over 35% of proven Lyme disease, especially in the late stages of illness. Systematic tracking of symptoms is critical to an accurate clinical diagnosis of Lyme disease.

A tick may transmit co-infections as well including but not limited to Bartonella, Babesia, Anaplasma, Mycoplasma, Erlichia, etc., further complicating both diagnosis and the course of treatment. Many infected persons can successfully treat the acute illness with a 3 week course of antibiotics such as Doxycycline. However for reasons yet to be explained, some persons will develop new or recurrent symptoms months or even years later. The bacteria can go dormant or hide in mucous-covered biofilms, hardened cyst forms, or inside other cells of the body requiring long term treatments closely administered by a Lyme Literate Medical Doctor (LLMD). The process of treating chronic or late Lyme disease and co-infections may last for years.

Once the patient finds an LLMD, the physician completes a comprehensive physical examination with special attention to neurologic, rheumatologic, and cardiac symptoms associated with Lyme disease. Physical findings are nonspecific and often normal, but arthritis, meningitis, and Bell’s palsy may sometimes be noted. Available data suggest that objective evidence is inadequate to make treatment decisions, because a significant number of Chronic Lyme disease cases may occur in symptomatic patients without positive findings on examination or confirmatory laboratory testing. The patient and LLMD also track the symptoms over time to indicate remission or exacerbation of Lyme disease and co-infections. The literature is divided as to the chances for a cure since future episodes of illness, major stresses and accidents have been shown to cause a recurrence of the disease.

While online research will yield a variety of medical and alternative treatment approaches, clinical research suggests that the success rate is greatest when the treatment protocol includes the following: a closely monitored course of various antibiotics, dietary changes, a specific exercise regime, and supportive therapies as guided by a LLMD. The LLMD closely examines other intervening health variables which may affect the recovery process, for example, a genetic disposition to mold illness and exposure to mold in a water-damaged building.

The author has chosen a blended approach to recovery closely monitored by her LLMD and healthcare team. While the scope of Julie’s treatment goes beyond the focus of this eBook, some strategies are discussed for the purpose of telling her story and not intended to endorse or recommend a particular course of action. Check her online blog at Hope Beyond Lyme for personal and periodic treatment updates and progress, current status, additional references, and encouragement in the second year of recovery.

As this eBook gets published, there continues to be hope and things are getting better! More on that in Hope Beyond Lyme: The Second Year! :J

About a Year in Review

Sadness is a gateway to healing

June 27, 2012

It is as if recovering from a serious illness wasn’t depressing enough! Sometimes one sorrow stirs up another. I began treating Lyme disease in January of 2012 and it has been a rocky road at best. I’ve had to quit working as an occupational therapist in home healthcare and scale way back on most homemaking and recreational activities. Somehow all of this loss and sadness has also been a gateway to healing in unexpected ways.

Today I grieved some more the loss of my father last year.  This memory was triggered while trying to encourage a friend facing the one-year anniversary of the loss of her father by sharing with her Josh Groban's ballad, To Where You Are (2001, Warner).  I sure didn't expect my own tears as I listened to this gorgeous music.  I guess the negative symptoms of this stage of the illness I'm battling have both softened me and taken their toll.  There is just too much time alone these days, too many noxious symptoms, too tight of finances and too much difficulty thinking straight as well.  I feel more vulnerable these days. I'll try to remember the truth of God’s word to help me:

⁴ You, dear children, are from God and have overcome them, because the one who is in you is greater than the one who is in the world. (1 John 4:4)

My Jesus is greater than this illness and the sorrows of the day.  He understands my tears for He also wept when His friend Lazarus died.  More than the death of Lazarus, some say he was grieving the fallen world in which we will all live, suffer and die.  We can take heart that He has overcome the world, the suffering, and even death.  I take heart that He is my Lord and in Him there is victory.  In this I will rest.  In this I will choose to rest. 

I’ll bet that next time I'll look at the camera!

He reigns!

July 1, 2012

When the dark symptoms came today, my beloved and I prayed for protection, deliverance, and freedom.  It came.

Why this is such a dreary journey I'll never know.  The wretched symptoms I have experienced brought me in my heart to the foot of the cross of Jesus Christ where my husband, Steve, prayed Romans 8:38-39:

³⁸ For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers,³⁹ neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Not only did the violent shaking of seizure attacks and groaning from miserable sickness end, I felt at peace with clarity of thought for the first time this week.  That was 3:00 p.m. and it is now 6:00 p.m.  I thought I would go grocery shopping but I now I am too depleted to go.  Guess you just focus on what is important at times like these.  By praying and singing the hymn noted below, I hope that my husband, Steve, and I did just that. 

I’m glad that Steve got in his kayaking race practice today and that I didn't keep him from getting out of the house.  I feel humbled by this time of illness where I can do so very little on my own to get better.  I must submit to the Lord, pray, and let my husband lead us into both humility and spiritual direction.  When I ask Steve how he can go through this with me and not be rattled by it, he says either, why would I? or because I have faith in the Lord.  Yes, I do too and appreciate your witness to me of what that strength really looks like. It is supernatural in our situation for sure.

Thank you, Lord, for getting me and Steve through the test of my faith today.  Thank you that you give us the confidence we need to face these trials, that you are stronger, strongest, the Victor over all.  Oh Lord, if it is your will, I pray that you heal me of this terrible disease and restore my life to joy and wholeness.  Protect me from further harm; protect my thoughts from doubt and discouragement.  Please guide and protect Steve as my spiritual leader, instrument of your peace.  Help me keep my eyes fixed on You, Lord.  You said in Your Word that you would restore the years the locusts have eaten (Joel 2:25).  I pray that you would restore the years the spirochetes and co-infections of Lyme disease have eaten!   I will trust You and wait on You, in Jesus name, amen.

As the lyrics of the old hymn goes, It Is Well With My Soul :J

Do-over

July 9, 2012

And ye shall seek me, and find me, when ye shall search for me with all your heart. (Jeremiah 29:13)

This is a resurrection lily.  Long, green leaves emerge in the springtime with the tulips then fade with the warmth of summer.  By the 4th of July, most of us forget that there are there as the leaves die back, underneath the soil.  Then in the Fall these striking pink, yellow, and violet lilies emerge on single stems, sharing its beauty for just under 2 weeks.   I received these from a friend when