Lyme Disease Awareness Month: What’s it like to be a Lyme patient in Canada?
In last week’s blog post that kicked-off International Lyme Disease Awareness Month, we discussed what Lyme Disease is and how you can catch it easily from the bite of an infected tick. This week I’m going to describe what it’s like to be a Canadian Lyme Disease patient.
Up until now I haven’t discussed what it’s like to have Lyme Disease, as a Canadian, because I’m still finding it really difficult to wrap my mind around what has happened to me. It took me 5-years to receive a clear diagnosis from a simple blood test, and when I finally got the diagnosis, I felt like I was home-free. I believed that finding out what was making me so sick — sick enough to lose my job and my independence — was going to be my get-out-of-jail-free card. I thought a diagnosis was going to be the first step in getting my life back. But, boy was I wrong.
When my Hematological Pathologist and Chronic Fatigue Syndrome (CFS) specialist showed me my blood test results, she said it was clear that I had Lyme Disease: both Western Blot tests (IgG & IgM) were positive to CDC standards (Center for Disease Control). My IFA test was also positive. As soon as she said that, I waited for her to tell me what to do next; I waited for her to tell me who she would refer me to in order to start treatment.
Instead, she simply said that she couldn’t treat me. And, the best thing to do would be to go to the United States, immediately, to find a Lyme literate doctor. She told me that if she treated me for Lyme Disease, her governing College of Physicians and Surgeons would reprimand her and revoke her medical license. No doctors in Canada area allowed to treat Lyme Disease, and if they do, they are certainly not allow to exceed 30-days of antibiotic therapy.
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My CFS specialist knew that I would need way more treatment than 30-days: since I had been infected with Lyme bacteria for 5-years. She knew that my only option was to leave Canada in order to receive the treatment that I needed.
I’ve had to fight for every inch of medical support; something I never thought I would have to do as a Canadian citizen.
After being sent home without any medical referral or advice on how to proceed. I went home, in shock. I was too numb to be angry (that came soon after). Instead, I crumpled into a teary mess. I had spent the last 5-years slowly losing my life. I went from being a highly energetic Ph.D. student, who loved to run, to losing my career, losing my energy, and living with unrelenting neurological issues. I could barely function — I couldn’t even to the basics like grocery shop or drive a car. I became a shut-in. And, after all of that, I couldn’t even get medical treatment once I was finally diagnosed.
I was now living in Wonderland: nothing made sense.
I went online to see if I could find any information on Lyme Disease; I stumbled upon the Canadian Lyme Disease Association website. I contacted a CanLyme representative to see if they could help. I was told that all Canadian Lyme patients had no choice but to go to the U.S. for treatment, since Canadian medical doctors were not allowed to treat the illness. But there was one, remaining infectious disease specialist in Toronto who was treating Lyme patients.
I couldn’t believe my luck! A doctor treating Lyme in my home town! I immediately went to see my family doctor to get a referral. I waited 3-months for the appointment.
When I went to see this infectious disease specialist, he agreed that I had Lyme Disease — I had three positive blood tests, after all. He started me on oral antibiotic treatment, and my symptoms got worse, which according to him was a good sign that the bacteria was being killed off.
I became hopeful. I thought my luck was different. I found a Canadian medical doctor willing to treat me. I was saved!
Then, 3-months into treatment, I was called into the infectious disease specialist’s office. He told me he couldn’t treat me anymore. He said that he was being threatened with an investigation by his governing College of Physicians and Surgeons. It seemed that they discovered that he was treating Lyme patients, and they were demanding that he stop. To save his practice, he ended up dropping all of his Lyme patients. And, I don’t blame him; what else could he do?
I found myself on my own, again, without any direction or advice.
The long road to recovery
After losing my medical care in Canada, it was official, there were no more doctors in Canada treating Lyme Disease (or, at least, they weren’t speaking about it). At that point, I knew that I had no other option than to find a doctor in the United States.
Again, I contacted the Canadian Lyme Disease Association for a recommendation. I was sent the name of a doctor in New York. I made an appointment and had to wait another 4-months. In the meantime, the bacteria in my body was growing, and I was getting sicker and sicker.
When I finally got to see my new doctor, I felt frustrated, yet relieved at the same time. I was so frustrated that I had to fight so hard to get medical treatment. I was frustrated that I had lost over 5-years of my life. And, I was frustrated that I was faced with the reality that I would have to pay for all of my medical care myself, and I didn’t even have a job or an income. I knew that I would have to plunge into a great deal of debt to reclaim my health.
But, like I said, at the moment that I met my new doctor, I felt relieved. She was a doctor that had had Lyme Disease, herself. She knew what I was up against. So, as before, I started back on antibiotic therapy. This time treatment was very aggressive.
It’s been an incredibly long road to recovery. And, I still have a ways to go. It is now 8-years since I was bitten by a tick and infected with Lyme Disease. I was on aggressive antibiotic treatment for 2.5 years. Most of my symptoms are gone, and I’m incredibly thankful for that. But, I’m still not well enough to return to a normal 9-5 job. I still need to regain my physical strength.
This whole Lyme experience has made me a changed person: I’m not the girl I used to be. The emotional and financial tsunami will take years to recover from. And, I can’t help but think of all the other Canadian Lyme Disease patients that are in the same boat as me.
There are thousands of Canadian Lyme patients (my Lyme doctor cares for 400 Canadian Lyme patients, alone), and all of us have to leave our own country for treatment. All of us have to fall into massive financial debt in order to reclaim our health. (Since becoming sick in 2006, I’ve spent tens of thousands of dollars on treatment.) I have chosen to follow that path, but many Lyme patients can’t, and quite a few patients have lost their lives to Lyme.
I don’t know what will happen in the future for Lyme patients in Canada. But I believe that the only solution would be to enact a law preventing the College of Physicians and Surgeons from prosecuting medical doctors from treating Lyme patients. There are doctors here willing to treat Lyme Disease; they’re just not allowed.
My Lyme life
I’ve spent the last 8-years dedicating my life to the building blocks of Lyme recovery. Not only have I focused on conventional antibiotic therapy, I’ve also completely transformed the way that I eat and live. I’ve learned, first hand, that reclaiming health does not only involve medical treatment; it also involves personal responsibility.
I believe that my recovery is in my own hands. I’ve learned that I have to be the catalyst to my own recovery. And, that, makes me feel powerful. Receiving medical care for Lyme Disease was absolutely necessary for my recovery. But it was only one piece of the recovery puzzle. Eating a clean, healthy, sugar-free, gluten-free diet has helped me to reap the benefits of medical treatment. I don’t believe my recovery would have come so far without diet transformation and holistic treatments like IV vitamins, supplements, detoxification, psychological counseling and meditation.
Treating our complete selves leads to lasting recovery. And, we all deserve to reclaim our health and to live a life on our own terms.
What’s in store for Canadian Lyme patients?
I have no idea what Canadian Lyme patients are going to do about lack of medical care. What’s it going to take? What do Lyme patients have to do to be heard and helped?
Here are some disturbing facts:
- Lyme patients typically wait 6-8 years for a clear diagnosis of Lyme.
- Lyme patients are typically misdiagnosed with Multiple Sclerosis, Chronic Fatigue Syndrome, Fibromyalgia, Rheumatoid Arthritis, Osteoarthritis, ALS, Parkinson’s, and a myriad of other conditions.
- Canadian Lyme patients typically have their medical appointments cancelled or denied. Doctors in Canada do not want to deal with Lyme patients.
- Canadian medical doctors willing to treatment Lyme patients have to do it secretly.
- Lyme infected mothers can infect their children, during pregnancy, but there is no help in Canada for babies born with Lyme Disease.
- The current Canadian blood testing protocol is unreliable, and it only tests for one strain of Lyme bacteria. Patients are told they do not have Lyme, even if they’re infected with other strains.
- Some Canadian Lyme patients are seeking treatment from veterinarians. Household pets can get Lyme too (dogs and cats), and vets know how serious Lyme is.
- The Canadian health care system current has no idea how many Canadians are infected with Lyme Disease.
- Two Canadian medical doctors, thus far, have been forced into retirement for treating Lyme patients, with more than 30-days of antibiotic therapy. The choice was either retirement or lose their medical license.
For Lyme patients in Canada, the wait for help continues.