By Jim Wilson
Lyme disease is something I knew very little of in 1991 when living in Dartmouth, Nova Scotia. So when a strange looking eight inch rash appeared around my naval in early June of that year, it set off no alarm bells. I had no symptoms of illness, so I never gave it a thought, believing I had just reacted to some plant or dust from doing spring yard clean up. Our house was for sale so I was doing more than just the normal clean-up.
Time went on and the house sold so we began our trip across Canada, moving to British Columbia. It was on that trip that strange symptoms started to appear beginning with numbness and tingling in my legs. And I found I had to pull over for a nap every two hours or so which was very unlike me. Over the coming weeks, months, then years more confusing symptoms came. But on a daily basis I never knew which symptoms may be more or less severe.
I had 24-hour-per-day, 365-day-per-year nausea, extreme fatigue, a brain/body disconnect, brain fog, short-term memory problems, bowel and bladder problems. Words that I used in normal conversation sometimes escaped me. My legs became unsteady and rubber like, and my knees would just give out without warning. I couldn't get rid of a constant inner vibration similar to what one might feel if they placed a vibrating tuning fork at the top of the spine. Sparkles, floaters, and waves appeared in my eyesight and there was greyness to my vision. I also experienced joint and muscle pain, but it migrated over time and ranged in severity. Sudden onset spasms and jerking motions would occur in my hands, arms and legs. My heart would palpitate, and my lymph nodes in my groin and armpits were consistently swollen and achy. For no apparent reason, my scalp would get sore bruised-like regions. Symptoms waxed and waned, came and went, then came again. And depression moved in, either as a symptom of Lyme disease or as a symptom of being so ill day in and day out.
After three years of revolving door doctor’s visits, that included just about every specialty, I achieved a mixed bag of theorized diagnoses, but I got nothing concrete. And no effective treatment plan was suggested other than symptom management drugs - some of which were expensive and powerful. Finally the doctors suggested this may be all in my head. They never responded when I asked them how I made my lymph nodes swell to the point they removed one from my groin sending it away for a biopsy (results were a normal functioning lymph node fighting an infection of unknown origin).
My wife knew this was not something manifested by my mind so she began a search at our local library for information on chronic diseases. It was then that she found a book a woman had written on Lyme disease and in that book was a picture of the rash that I had had around my naval three years earlier. The book related a blueprint of my health over the previous three years.
With this new information, off I went to the doctor, book in hand. No way, Canada did not have Lyme disease. The doctor begrudgingly tested me for Lyme disease but it came back negative, followed by a confident, “I told you so” from the doctor. With the information in the back of the book, we contacted a USA Lyme society and through them found a doctor Dr. L. Kindree, who then was practicing in Squamish, BC. He became "Lyme disease knowledgeable" when it was discovered that his daughter, Diane Kindree, had contracted Lyme disease while in Europe. Diane had started the Lyme Borreliosis Society of British Columbia in 1989.
Dr. Kindree clinically diagnosed me with Lyme disease and prescribed antibiotics. I felt worse for the first week or two, but at week 3 or 4 it was like a rebirth. My energy came back, my brain straightened out and all the strange symptoms cleared over time. I felt great so long as I was on the antibiotics. But each time I stopped, my symptoms would return within weeks. After years of trial and error in antibiotic choices and dosage, I was finally able to stop without relapsing. Dr. Kindree had retired by then.
In 2001, my daughter who was in grade 12 contracted Lyme disease here in BC as did some other teens at her school within a year or so of each other. Her heart was affected quite severely so she was immediately put on three months of antibiotics by a local general practitioner. At the end of the forth week I went to our hospital pharmacy to pick up her next weeks' IV antibiotics (this was administered at home) but was told that an infectious disease doctor who had never seen my daughter had said 4 weeks was enough. I argued the obvious to the head of the hospital... that infectious disease doctor could not stop the treatment prescribed by another doctor for a patient he had never seen. I suggested if I did not leave with the antibiotics in hand, I would return that day with my lawyer. I left with the antibiotics and there was no more interference in her treatment.
My daughter finally began to feel well again at about the eighth week. We wonder of course what would have happened to her if that infectious disease doctor had won and her antibiotics stopped. She continued on oral antibiotics for another two years until all her symptoms resolved. She has been off all antibiotics and doing well for about a decade now.
What were the odds of two people in the same family, a decade and 5000 kilometers apart, getting a disease we were told was so very rare in Canada? It was too much of a coincidence for me to accept, which prompted my to start the Canadian Lyme Disease Foundation (CanLyme.com).
I knew out of the gate that we required a Board of Directors that was science and medically oriented so I sought out researchers at our universities who had anything to do with Lyme disease and invited them to join. Most agreed. Our founding full Board consisted of a Ph.D. zoologist, the retired Head of Vector Borne disease from the BC Center for disease Control, a Ph.D. molecular biologist, a Ph.D. neuroscientist, a Ph.D. neuro-psychiatric researcher, a general practitioner physician, an infectious disease doctor and 4 others, including myself. The Board has changed some members over the years but is still focused on the science.
CanLyme became a registered federal charitable organization in 2004 after our website went online in May of 2003. In that first month the website had only 37 hits but by the end of 2003 the site was receiving 15,000 hits per day. I had been right: it was no mere coincidence that both my daughter and I contracted a very rare disease. In Canada, the disease was everywhere. It was the diagnosis that was rare.
CanLyme has undertaken a wide variety of activities to increase awareness, including putting on medical and science seminars or coordinating with others to arrange them. We communicated with provincial and federal health care officials, continuing to put pressure on them to improve testing as well as public and physician education. To broaden our knowledge and to keep current we have connected with scientists and doctors on several continents.
Publicity has been a major tool in getting our message out to the public and health care professionals. The medical bureaucracy is very slow to latch onto to fairly new and evolving diseases.
Much of the education given to doctors over the past two decades in Canada has been wrong.
Lyme disease is not rare. The bull’s eye rash is not the hallmark symptom as it occurs in only 9% of cases. It is not easily cured with 3 weeks of antibiotics. As shown by the research on monkeys, the bacteria can survive even 3 months of antibiotics, hence the reason so many people require longer term antibiotic therapy. Health Canada finally admitted in the fall of 2012 in the Canadian Adverse Reactions Newsletter that their Lyme tests were incapable of detecting the wide diversity of the Lyme bacteria we now know we have. Tens of thousands of Canadians have been tested over the past 25 plus years with a faulty test. Canada has no idea how many of those tested may or may not have had Lyme disease.
Ontario based researcher and Lyme disease victim, John Scott, has published several papers showing the diversity of the bacteria we have in Canada. He established the Lyme disease Association of Ontario in 1990 and has also been largely responsible for showing us it’s the migratory birds - such as our friendly robins, sparrows, finches etc. - that are rapidly moving the infected ticks into Canada. Yet doctors and the public were (and still are) led to believe Lyme disease only occurs in a certain few regions.
CanLyme continues to challenge the status quo as well as those who hold on to the status quo. We were excited to work over the past two and a half years with the BC government as it set up the Complex Chronic Diseases Program housed at the BC Women’s Hospital in Vancouver. This should have been the shining light for Canada to move Lyme disease knowledge and treatment here out of the dark ages. But in the end, the old-guard dogmatists who held the power refused to think more broadly about the sources of Lyme Disease. As a result, this past summer CanLyme announced we had to withdraw our support of the program because little real help was being offered for a Lyme disease patient.
But we have had some wins and many sticks in the fire on many fronts which we hope over time will affect real change. For example, CanLyme board member Rossana Magnotta, founder and owner of Magnotta Winery in Ontario, became involved with CanLyme in 2007 after her husband Gabe was diagnosed. She shared our goals for establishing a human research program and in addition to joining our board, she also founded the G. Magnotta Foundation for Vector Borne Diseases in Ontario. Working together, CanLyme and the G. Magnotta Foundation have successfully partnered with Toronto’s new Humber River Hospital so that when this hospital opens in 2015 it will have a state-of-the-art facility with a first-of-its-kind human tissue research program.
As we at CanLyme and now at the G Magnotta Foundation push forward, the old-guard bureaucrat’s grip on the Lyme disease matter in Canada is slipping. Science will reward us all with a much brighter future for vector borne diseases.