Open Letter to: Dr.

Butler Jones (Chief Medical Officer Canada) I am deeply worried, frustrated and I despair, about Canada and the health of its citizens. I request 10 minutes of your time to read this letter. (Upon reading what I have written it might take you longer) I request you read with an open mind, and to suspend judgment. There is a Lyme Disease and Co infection Epidemic at in Canada right now. As stated by the CDC, Lyme is the fastest growing blood born illness in the world. As a Lyme Disease and Co infection Educator for the last 3 years in Canada, I have seen a disturbing increase in Lyme Disease Infections. I will attempt to illustrate this with examples: I met a young nurse in a local clothing store, last month. I gave her my card, and my 3-minute educational talk, on Lyme Disease in Kingston and area. She then looked very worried. She told me her boyfriend, had a tick almost a year ago. That the doctors said he was fine, but since that time he has been diagnosed with arthritis and is taking Celebrex. He has numbness in his hands, and drops things. He was also diagnosed with Carpal Tunnel Syndrome because his mother suffers from this also. Has trouble walking, and has no energy. I asked if perhaps she had a picture of the bite site and right there in the store she texted me the picture. I subsequently sent the picture to Dr. Ernie Murakami at a fundraiser for Lymesavers.ca, in Whitby Ontario on the 21 st of May of this year. He assessed it as a classic Erythema chronicum migrans, (also called also erythema migrans or EM) telltale bulls-eye rash. This man 28 years old is being treated with a drug that in the USA is taking a hard hit as class action suits prove that it can cause heart attacks. Is this effective treatment? This isnt about attributing blame; this is about building informational bridges, from scientists to doctors to patient. This weekend past I saw 2 EM rashes, at an outdoor Scottish Festival where I set up my educational RV, and awareness tables. These people had 2 different stories: 1) A gentleman in 70s showed me a picture of the site of his bite. He said the doctor attempted to remove the tick, and broke its head off. He was given 1 high dose doxycycline. He was still very worried and was relieved to see my RV and that I had knowledge of what was happening in Canada. I directed him to Dr. Murakamis website, and am in contact with him. He has gone to his doctor requesting abx to kill the eggs in his blood as the Lyme Spirochete has a 18 day cycle

2) Women 40 years of age, who happened to live up the road from me. She approached the RV gingerly, looked at all the documentation and said she had found a tick on herself that morning. It was very engorged as she described it to me, but I did not see the tick. I asked her where the site was and she said her behind. She showed me another EM. Being an educator and not a doctor, I suggested she go to her family doctor. She said she didnt have one because she was new to the area and asked what I thought she should do. I suggested going to a walk in clinic, or the Hotel Dieu Hospital. I pulled out my IPad, and we searched the net for the nearest open clinic as it was getting late in the evening. Dr. Butler-Jones, I chose these briefs histories as illustration because we have already reached the tipping point for a Lyme Disease Epidemic in Canada. These events have happened to me in the past 3 weeks. These cases were but a few of those in Kingston, Ontario. The problem is that these folks have no one to contact and are dealing with a medical system that does not know how to clinically diagnose or effectively treat Lyme disease, in the acute form. As you know, the most effective treatment within a month of infection is 4 weeks of doxycycline, or for children under 8, it is amoxicillin. When treated promptly, this is a simple and quick way to cure the disease. Time, however, weighs against the physician and Lyme patient as this treatment must start within a month of infection, if not, then the disease goes into a chronic phase that is much more difficult to treat. The infection Borrelia burgdorferi is injected in 2 forms: spirochaetes and eggs. While the antibiotic kills the spirochaetes in the blood system; if the antibiotic is not present when the eggs hatch, then re-infection occurs, hence the need for a prolonged dosage of antibiotics. Blacklegged ticks inject not only the Lyme infection Borrelia burgdorferi, but also the co-infections Babasia, Bartenella and Ehrlichiosis into their unwitting hosts. Many Lymeliterate doctors consider Babesia (as called North American Malaria) is as serious, or more serious than Lyme disease. As you know, Ehrlichiosis in humans can be deadly The concern about Lyme disease is growing- I have over 800 people who have contacted my on Facebook who have Lyme disease. I am one go-to people for Lyme disease in Ontario and as such, I am getting flooded with requests from people who have recently been diagnosed with Lyme disease, via Igenx lab results or clinical diagnosis by their doctors. There are so many now, I cannot remember many of their names or where they live; I need to create a database to keep up. As you may know, you cannot be treated for Chronic Lyme Disease in Canada. I correspond with many people who have had Chronic Lyme for as little as 2 months (2nd stage) and as long as their whole lives, 40 years. These people

have been abandoned by the medical system, often diagnosed with mental disorders and left to deal with this disease and co-infection on their own. Many are left without any resources, and are dying in their beds. I cannot begin to imagine how many are on our streets that have not been caught by social safety nets. I have corresponded with Dr. Robbin Lindsay, a research scientist with the Public Health Agency of Canada frequently since last September. He had been predicting this upswing in ticks and infection for several years. As he receives the ticks collected by Health Units across Canada; however, he is only testing Blacklegged Deer Tick and neither, I. pacificus and I. scapularis. It has been shown that other hard bodied ticks such as the Lone Star tick and the Brown Dog Tick also harbor Lyme Disease and co-infections. So the statistics that are being reported in Dr. Lindsays tick vectors are not accurate. While attending a meeting in Winnipeg in October with Deputy Health Minister, Mr. Milton Sussman, to discuss Lyme disease strategy but instead ended up reviewing the rough draft of a pamphlet that contained many errors and misinformation. I have written to my own Minister of Health and Long Term Care in Ontario, contacted my local MPP and MP, none of whom were willing to step up to the plate. I have received back information that is incorrect and antiquated, leaving me again disappointed. In essence, this is the issue: our Infectious Disease doctors of the AMMI have chosen the same protocol for treatment of Lyme Disease and co- infections that is being recommended and used by the IDSA in the United States. This protocol was put together in 2006, and many things have changed scientifically in the time past 2006. These protocols should have been evaluated in 5 years in 2011 but the IDSA claims that since they were under investigation concerning these protocols in the last 5 years they do not have to review them. Not only are these mens clubs dictating the way in which Lyme Disease may be treated, (in Canada, and they are Americans) they are refusing to update the protocols based on new and extensively peer-reviewed studies. The IDSA protocols are deeply flawed: 1) 2) 3) 4) Elisa testing- 50-75% false negative, Clinical evaluation poor see Murakami Clinical Evaluation, Treatment protocols high dose abx does not kill eggs, The direction that long term abx is not successful in irradiating the disease, has been successfully proven to be a myth (the myth continues to leave us with quality of lives of 1 or 2 out of 10) 5) No recommendations for the treatments of co-infections 6) Recommendation for Chronic Lyme Disease- Do not treat

In the USA, 9 States have broken with the Lyme and co-infection protocol because it is deeply flawed. Doctors in these states can use long-term antibiotics, anti-malarials, cyst busters and biofilm dissolvers at their own discretion (usually using the ILADS protocol) Doctors in the USA have been fighting for many years to change the IDSA protocols, led by Dr. Burascanno, Dr. Jones, Dr. Klinghart, and many others. (Included is Burascannos protocol that has been adopted by ILADS - please see ILADS.org) It should be noted that these doctors advocated change at their own risk and have subsequently been harassed, sued, even as they continue to successfully treat patients with Lyme Disease and co-infections. Dr. Jones, a pediatric Lyme doctor has successfully treated 15,000 children. Many were previously misdiagnosed with Autism, ADD, ADHD, OCD, MS and other maladies. Doctors in Canada have been fighting extremely hard for change also and their work has been sanctioned. Dr. Murakami of Hope, B.C. finally resigned his license in 2005, as he could not take the stress of investigation and the sanction that 2 medical doctors were to follow him around all day long. I note here that Dr. Murakami has taken 25 people out of wheelchairs, using ILADS protocols, as they were misdiagnosed and were receiving care for maladies that they did not have. Dr. Bagdalian from the Toronto area similarly lost his license although he saved the lives of many of his Lyme patients. Many doctors, Infectious Disease or otherwise, have had their licenses removed for treating as per the Burascanno guidelines. The last Canadian doctor was in Nova Scotia, and his license was removed a month ago. We have a crisis of national proportions in Canada today. As of this date there are no MDs, ID or otherwise officially treating Chronic Lyme Disease in Canada. Nor is there a national strategy on how to treat Lyme. As a consequence, patients are looking elsewhere for treatments. In British Columbia, appropriately certified Naturopathic Doctors, NDs, have the ability to give prescribe long-term antibiotics, orally or IV. These people are not covered by the provincial health care and must pay for their treatments out of pockets. Increasingly, Canadians are seeking diagnosis and treatment in the USA. This is a failure in public health policy. Somehow our Medical System, including scientists, doctors and politicians and civil servants have dropped the ball on this one. At the AMMI conference in Quebec City in Feb, there was not ONE lecture on Lyme disease and Co-infections. How can this deliberate ignorance be reconciled with the reality that we are embroiled in an epidemic thats scope is larger than AIDS, H1N1, West Nile, and SARS put together? I do not question why this is happening but my lament is that it is happening. MP

Elizabeth May has put forward a bill C-442, (attached), to change the protocols for Lyme in Canada. In my opinion, it is a solid, document in and should be implemented immediately, not waiting for more discussions, delays, deaths and destruction of families. I acknowledge that Private Member Bills rarely pass. My MP, Ted Tsu informed me that after Bill C-442s second reading, they had only 2 weeks to find out about the topic, and could vote on what they found, or their constituents were pushing for. All of this serves to stack the deck against change as the very people of need the help are least able to ask for it: Lyme Disease Patients are confused in the acute stage, and certainly not lobbying for a Bill, and Chronic Lyme patients are either sick in bed, or sick on the streets. Last week I did a presentation to the communicable disease nurses at the Kingston Health Unit. I originally wanted to meet with them concerning endemic areas around Kingston having no signage alerting people to the Tick infestations and the 21% chance of getting bitten by an infected tick. There are few signs in our area and millions of infected ticks. Dr. Robbin Lindsay alerted me to the fact that the health units were held to due diligence when they received his maps with stats and tick vectors to educate people and put up signs. He called the Health Unit personally when I told him due diligence was not being respected. As I dug deeper into our Heath Unit, I was terribly discouraged, that you had to dig deeply into their website, to find any thing out about Endemic Areas and the percentage of infected ticks. Our Heath Unit web site is constantly quoted as the place to find more information about Lyme and ticks. The main page contains a large picture of a woman with skin damage from the sun. The Health Unit is suggesting people not to use tanning beds but there is nothing about the epidemic, on its main page. On further digging, I found a blog post by the Medical Officer of Health for Kingston Unit, from 2009, rife with misinformation. In his learned opinion, there is no cause for concern. To me again this is ironic as Kingston and the Islands is endemic with ticks and the Health Unit reported that 21% of ticks sent to Dr. Robbin Lindsay last year were infected with Lyme Disease. Kingstonians are being mislead by their doctors that bringing in the tick will let them know if the tick is infected or not, and that his will help with their diagnosis. This is NOT the purpose of the tick collection at our Health Units- the purpose is to track the growth of tick vectors as part of a field survey. However, on speaking with people in Kingston and Ottawa, their understanding was their doctor was having the tick sent in for diagnosis. So, at the critical moment of diagnosis, doctors are sending away ticks for evaluation, rather than making a clinical diagnosis. The evaluations of ticks can take, on average, 6 weeks. Patients infected with Lyme and co-infections are now in the chronic stage. At a recent lecture I did in Kingston, a lady in the audience said it took 9 months for her to receive her tick infection results. When I wrote to Dr. Lindsay he emphatically said that only blacklegged deer ticks are send to him to monitor tick vectors and create maps. Here lies a second problem- you can only measure what you see- there is an abundance of studies that suggest that other hard ticks such as the Lone Star Tick and the American

Dog tick carry Lyme Disease and Co infections. The vials are sent from a Health Unit to Toronto, where the tick is identified. If the tick is a Blacklegged deer tick then it is forwarded on to Dr. Robbin Lindsay. Other tick species are disposed of in Toronto. So while doctors and Health Unit education campaigns are telling patients to go to the Health Unit to find out if the tick is infected, this does not work. Local doctors are also telling people that they will do blood-work, and find out if they are infected. Of course they are given the notoriously incorrect ELISA Test that gives unacceptably high false-negative results. When the blood tests come back negative patients are told they do not have Lyme. If a patient does pass the ELISA test, then the lab automatically runs the Western Blot Test to find if the body is creating antibodies against the Borr Burg. I do not know what bands this test is testing for, or how they determine a positive test, as the patient only receives a positive or negative result. This again is problematic as if the patient is on antibiotics, the test may come out negative. If the test is given too quickly the body hasnt made enough antibodies to show up on the test. Also since some people do not create antibodies, this test is not definitive. While more accurate (and expensive) than the ELISA test, the Western Blot it is not the best available. The gold standard is a blood culture technique that is available through Advanced Labs in Pa, USA, right now. This technology must be brought to Canada, and given to our scientists, labs, and made available to our doctors. This would save many lives, and give lives back to those misdiagnosed with other illnesses. I have mentioned again that there are misdiagnoses of other illnesses for Lyme patients in Canada. Why do I say this? Canada has the highest incidence of MS in the world and the lowest incidence of Lyme disease. As you know MS is a clinical diagnosis. I dont want to venture to say what kind of diagnosis Lyme disease is with the up to 70% false negative Elisa and no standardized clinical assessment at this time. Many doctors in Canada do not know how to clinically diagnose Lyme disease. (See Murakami Clinical Diagnosis.) Doctors in Canada do not have the tools to Diagnose Lyme disease and co-infections clinically as they are directed to do because there is no standardized protocol for this. The combination of poor blood tests, and poor public awareness, poor education of our doctors in the clinical diagnosis has left Canadians vulnerable to this Epidemic. The CDC states that 30,158 were infected with Lyme Disease in the USA, and is as is stated in the 2010 Summaries of Notifiable Diseases in the US (the last record that has been released). The CDC does suggest that this number is probably double as these were reported cases. In the year 2010, Canada through mandatory reporting, reported 953 cases of Lyme Disease. I cannot see how this is possible as I can see the US from the banks of the St. Lawrence, and we share a boarder with the US the whole length of Canada. The number must

be closer to 5,000 using the CDC statistics. This is easily noted, certainly not easily understood. This leads me to the following horribly disturbing conclusions: mothers with Lyme Disease will pass the disease on to their children, unless properly treated and monitored; Lyme disease may be sexually transmitted; and since the Canadian Blood Services neither tests for it nor asks about it, Lyme disease can enter the blood supply. In addition, our organ transplant pool is probably tainted, as only a small percentage of people with Lyme know they have Lyme. The spirochaetes drill their way into all organs, and are viable in organ transplants. As an educator I do not venture to suggest why people are getting infected in their own backyards in from all over Canada. I do know they are getting infected as they are in contact with me. I have just returned from another free lecture on Lyme Disease. This one I gave to the Grounds Staff at Base Kingston. In a room of 20 people, none of them knew they risk they are at, as per the Base Kingston study on Ticks done in the Fall of 2012. One of he staff asked for the clinical diagnosis sheet, as he is having many of the symptoms associated with Lyme Disease and Coinfections. I have been trying to see the Base Commander for over a month, as I have been collecting ticks on my own property since late April. I know that 21% of the ticks on Base Kingston are infected. People are not being clinically diagnosed correctly and are passing into Chronic Lyme, which is not treatable in Canada. He is unable to meet with me until the middle of June. I have been directed to the Base Surgeons office. I remain frustrated and confused as to how we can let innocent uninformed people work in such a dangerous area. All people on Base are at risk, from the families in the PMQs to Soldiers, Officers, and Support Staff. The science is there, facts are in place, the education is not. I offer free clear information, and because of the time of year I am put on the back burner. As I am on the back burner with valuable information, the tick population continues to explode, thus the incidence of Lyme Disease and Coinfections. Why is it so hard to effect change? While our Health Care system is under greater stresses taking care of an aging population, it is neither responsive nor responsible in taking care of Lyme patients. I implore you, Dr. David Butler-Jones to push the epidemic button, and do as outlined in your job description. Education must be administered to our front line doctors, health units, teachers in school, daycares, to our whole population, immediately or many will die. I am not even speaking of Lyme disease patients who have lost everything, from friends, family, jobs, their minds, living in horrible pain, and distress. That is another matter for another day. I am speaking of acute Lyme disease that can be treated easily for $15.00 of antibiotics.

I have had Lyme Disease and Co infections for over 25 years; I am blessed with a family that was able to get me to the United States and to a Lyme-literate doctor. My treatments have cost us over $100,000. There is HOPE for those with Lyme, that is why I sit on the board of Lymesavers.ca, why I maintain my website Lymezone.ca, one of the many Facebook Lyme groups, Lyme Warriors Canada. You will be able to see what disenfranchised, sick Warriors are doing in Canada, to try to save each others lives, without any government help. Although I say there is HOPE, this hope is not the cure that we need. HOPE lies in the hearts of Lyme Disease Warriors who fight the disease everyday, to have our voices be heard. Please hear the Warriors who fight the disease in their blood, and those Warriors who stand by us in our hellish existence, whether, doctors, scientists, spouses, children, brothers, sisters, parents and friends. The cure now lies in your hands, and those who you serve. Will you not take on our HOPE and our battle as Canadas battle? We, as Lyme Warriors, have been fighting alone for too long. We cannot control this epidemic alone and cannot take on the bureaucracy to demand change by ourselves. This bacterium has the potential to kill, and take the lives of so many and decrease the quality of living so low that people choose to take their own lives. Our policies are prolonging the suffering of those with Lyme disease. Lets start with the recognition of this epidemic and start a new strategy to protect, diagnose and treat Canadians. Wendy Yaxley Aitken BSc BEd Wendy@Lymezone.ca Lymezone.ca Wendy Yaxley Aitken facebook Facebook Group: Lyme Warriors Canada Twitter: Lymezoner This is the type of emails I am receiving daily. (I got this one today) I am alarmed and I despair, as people are NOT receiving preventative information that is correct, and doctors are not able to clinically diagnose Lyme and Co infections.
Hi Wendy, My son David, who has Down Syndrome, and I just met you about a week ago or so at the Home Outfitters in west Kingston. I am the one who lived on Nantucket Island when it was the Lyme epicenter. On Thursday night, having been away for 2 nights from my kids, I was putting Davey to bed when I noticed an oval red spot with a dark, spherical dot in the middle. I examined it, deemed it to be a deer tick having seen them engorged thusly on Nantucket (or whatever name you all give around here to those tiny poppy seed ones). I went to get glasses and when I came back, of course, Davey announced he had scratched it off and flicked it on the floor; the head was still embedded.

He does not have the ring rash but has a coin sized red oval and the rays around it made me very nervous. I took him to our GP yesterday after being told by my sister who is a local doctor that it couldn't be a tick that size as the nymphs don't bite. I rolled my eyes and went to my doc. She was interested in my knowledge and keen not to simply follow the limp-wristed protocol she has been given, especially given my assertion that only 30% of Lyme carrying ticks generate a ring rash. We agreed that Daveys inability to verbalize his symptoms means we need to be a bit more cautious. She has removed a bunch of these little ticks on other patients so far this spring, and treated for Lyme twice according to perceived need. She agreed that the head appeared to be still lodged in his skin and she removed it with fine tweezers, despite John's howls. So he has been given a 3 week course of Doxycycline - 100 - 2 caps daily. She wanted to give me just 2 weeks but I suggested that might not be enough as he was in the long grass on our farmland mowing and playing on Tuesday. That is when he picked it up, I believe, as he was in more urban environs Wednesday and Thursday. So Tuesday afternoon to Friday afternoon means 3 days undetected. Do you think we need to administer all three weeks of the Doxycycline or can we just do 2, as her protcol suggested a range of 2-3 weeks? Does her dosing seem right to you? I regretted that I left your brochure in our Kingston house. When I looked up your website Thursday/ Friday, it was temporarily inoperative. But I found this email address. Hopefully it works. It was such a blessing to run in to you, particularly given this bite. Let me know if you have any thoughts. Thanks, Holly