Lyme Disease Awareness Month: What’s it like to be a Lyme patient in Canada?

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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.

Lyme Disease Fact

Shocking Eye-Opener

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.

Lyme Disease Awareness

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.

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28 Comments on “Lyme Disease Awareness Month: What’s it like to be a Lyme patient in Canada?

  1. Pingback: KatherineMaeRMT.com - May: Lyme Disease Awareness Month - KatherineMaeRMT.com

  2.  by  Dana

    Hi Alison,
    I too have Lyme and passed it to both of my beautiful children inutero before being accurately diagnosed. I am spreading the word this month. May I use your images?

    •  by  admin

      Hi Dana, Thank you for helping to spread the word. Yes…please go ahead and share the images. All the best to you and your kids! Be well.

  3.  by  Niki Bone

    Hi Alison
    What an accurate and sad account of dealing with Lyme Disease here in Camada. My oldest daughter got bit by a tick in March of 2005. What an eye opener. We got her diagnosis of Lyme by one of the last wonderful doctors in BC who treated — after seeing countless doctors who treated her and our family. They all thought we were crazy. Tried to even have me diagnosed with Munchausen’s (not sure of the spelling).
    Doctors told us she would die within the month because she was getting so bad so quickly.
    Thankfully through Canlyme we found our saving grace in the form of her Lyme literate doctor who treated her for over a year.
    Sadly, the next year our youngest daughter got bit and started showing symptoms and we went to a local doctor who used to live in eastern US and asked if I had any understanding of what Lyme was. Boy did I ever. And put her on 8 weeks of ABX. And told us to take her to a Lyme literate Doctor.
    My husband and I have become very vocal and have helped numerous people through treatment and just been there to listen. It is such a horrible disease that not very many people understand and know about. I only wish we had an endless amount of money to help people get treated.
    Thank you for your blog. Our daughter is no an RN and so far symptom free for 8 years.
    Hope you are well.

    •  by  admin

      Thank you so much for connecting, Niki. Isn’t it amazing how many Lyme affected families there are in Canada? I’m still so surprised that I had to leave the country for treatment. I’m so happy to hear that your daughter has been symptom free for 8 years. And, thank you for being such a strong advocate. You’re wonderful!

  4.  by  Mark P Meagher

    Alison,

    My employer is promoting Lyme Disease Awareness this month and I’d like your permission to use one of your posters in a photograph I plan to submit. The poster is entitled “Lyme-Disease-Awareness-Month”.

    •  by  admin

      Hi Mark, absolutely! Please feel free to use one of my images. It’s so wonderful that your employer is advocating for Lyme. Getting the word out is so important. Knowledge is power, right?

  5. Pingback: Bill C-442 National Lyme Strategy Passes Third Reading | AlisonSmith

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  7.  by  Kacey

    Allison,

    Can you tell me exactly what to ask a doctor to specifically look for or test for in a blood test for Lyme disease? My husband was diagnosed about 10 years ago with MS but I have been convinced since we started dating five years ago that it isn’t MS. He was bitten by a tick about 12 years ago and was diagnosed with Lymes and the doctor gave him 5 days of antibiotics and that was that. He has an appointment in less than a month with his endocrinologist (he is a type 1 diabetic) and we both want him to be tested for Lyme.
    Thank you!

    •  by  admin

      Hi Kacey. This is a really great question. Are you in the U.S. or Canada? Realize that Lyme Disease blood testing is not entirely accurate, yet. Right now, there are two main blood tests: the ELISA and the Western Blot. There are at least 8 published studies that prove the ELISA to be very unreliable if someone has been infected for a long time. The Western Blot, that shows ALL of the tested bands, is the desired test, but it isn’t 100% accurate either. Many people who want to be tested for Lyme do so through two main labs (IGENEX or StoneyBrook). For me, I called IGENEX.com, and they sent me a blood test kit. I had my doctor sign the requisition form, and I paid out of pocket for the test. Through IGENEX, I had a Western Blood blood test done (an IgG and IgM panel), and an IFA test done. In Canada, I don’t have access to getting a Western Blog test done — so, I had no choice but to pay for one through IGENEX. If you are comfortable with getting tested through IGENEX, just give them a call (IGENEX.com), and ask them to send you a blood test kit through the mail. I think it’s a great idea to test for Lyme — after all, you never know, right? I did the testing just to cross one more possibility off the list. Email me if you have further questions: info@alisonsmith.com You can also read about Lyme testing, more, here: http://canlyme.com/just-diagnosed/testing/

      •  by  Kacey

        Thank you so much! I just called IGENEX and left a message to order the blood test. We are in the US. I just have such little faith in most western medicine & doctors. It seems most (not all) want to treat symptoms instead of cure. Seeing my husband in constant pain is heart breaking.

        •  by  admin

          Hi Kacey, I would love to be kept in the loop. Since you’re in the States, I would recommend that you also become familiar with ILADS.org (The International Lyme & Associative Diseases society). ILADS will be able to direct you to qualified Lyme Literate doctors — if you decide to investigate the Lyme possibility further after being tested. It’s very important to see an MD who has a great deal of Lyme experience, who is ILADS trained. You can also Google Lyme support groups in your city or state. You’re most likely going to need some assistance interpreting the test results. I wish you all the best : )

        •  by  Alia

          I am just wondering what your total price was.
          I have a baby and I can’t return to work because of this pain. I am worried its too expensive .

          •  by  admin

            Hi Alia,
            Yes, one of the most horrible things is how expensive treatment is, since treatment in the States is not covered in Canada. That being said, if your health is really suffering, and you haven’t received treatment for Lyme, yet, then I really encourage you to at least have a consultation with a Lyme literate doctor in the States. My Dr. is Dr. McShane in New York…but, there are others across the U.S. In total, I spent $50,000 of healthcare over 8-years. I just took the stance that I was willing to do anything to get my life back. And, if you can get back to work that would be wonderful, right? All the best!

  8.  by  Nancy N

    My brother in law lives in rural Nfld. He was initially diagnosed and treated for MS; until a trip to Poland for liberation treatment, and Dr there said no, it’s Lyme Disease. No Dr’s locally knew about the disease so for years he travelled to Nova Scotia for medications which Dr stopped a year or so ago. This GP is now retired. Chris is pain free; but functionally things are very difficult; requiring a wheelchair basically. His health seems to have deteriorated the past 6 months and it appears to be a recurrence of Lyme’s; we are at a loss as to where to go for treatment. He needs specialist in NFld or Nova Scotia. If you know of any Dr treating Lyme in Nfld or N S, please advise.

    •  by  admin

      Nancy, Thank you so much for your comment. I’ve met so many Lyme patients that were originally diagnosed with MS. Now, every
      time I meet someone with MS, I bring up the topic of Lyme. So many people have never heard of Lyme — I certain didn’t. Unfortunately, like all Canadian provinces, I don’t think there is even one MD treating Lyme on the east coast. Have you been in contact with CanLyme.com? They would be able to refer you to their provincial rep in Nfld or NS. I found my U.S. Lyme doctor through a CanLyme recommendation.

  9.  by  Shannon

    Hi Alison,
    Wow! What an amazing, scary, heart wrenching and inspiring story. Thank you for sharing it, I’m so glad to have read it. I was just diagnosed with Lyme disease in February, after being sick since around October 2012.

    I have been working with an Internal Specialist as my MD had run out of ideas as to why I was so sick, and the Internal Specialist was quick to dx me with CFS, and I asked about Lyme and he said no. Since then, I just see him for iron infusions, and I have told him I was dx with Lyme and he was incredulous…..saying chronic LD doesn’t exist, where would I have gotten it.

    I was also DX with Intracranial Hypertension/pseudotumor cerebri and needed to see a Neuro Ophthalmologist and she said “The real LD patients are in the hospital, you don’t look sick”.

    How do you deal with doctors/specialists/people in general who don’t believe you/say ignorant things such as those above? I’m 24 and while I have 2 years of nursing background before I got sick, and can fiend for myself, I don’t look/sound super convincing when exhausted, nor do I want to make a bad impression and fight the Dr’s.

    I apologize for the long post, I just thought you would be an expert at this by now! Thank you again for sharing your story, you are amazing, I hope you know that!
    Shannon

    •  by  admin

      Hi Shannon, thanks so much for stopping by to say hello. Dealing with rude doctors is certainly very difficult. I think it all comes down to lack of information. Most MDs do not know what Lyme does to the body, so they think it’s not a big deal. Have you found a Lyme literate doctor, yet?

      •  by  Shannon

        Hi Alison, thank you for the reply!

        I am working with a lyme literate naturopath. My results were some positive, some negative, and some IND, but not CDC positive (Igenex test). However he looked and said Lyme, especially with my symptoms. We retested just recently and my results are still inconclusive…now mostly IND with positive, and my CD57 is low. I guess it’s hard saying to Dr’s that I HAVE IT, because the results have been so inconclusive…though I don’t divulge that as it would make the conversation awful. Is it normal for lyme patients’ results to be all over the map?

        I have been on antibiotics since Feb, and my Internist as I said is skeptical–saying “As long as you DO NOT do IV meds I guess it’s fine…”, however the next move for my naturopath may be IV meds as my brain is involved. Awkward.

        Thank you!
        Shannon

        •  by  admin

          You’re right, Shannon; results can be all over the place. That’s why it’s so important to be under the care of a very experienced Lyme specialist. It would be so great if there was a reliable blood test — the wait continues!

        •  by  Christina

          Hi Shannon, my sister is having similar symptoms and issues. Did you ever find a doc to help you?

          •  by  Shannon

            Hi Christina,
            I am still under the care of a Naturopath who is experienced in lyme, in BC. I take topiramate for my Intracranial hypertension, but I still don’t have a reduction in the brain/migraine symptoms to a comfortable level. I expect that with time and more treatment they will go away either mostly or altogether…..if not, I will go back to my neurologist! How is your sister doing?

  10.  by  April

    Thank you for this very well written blog. My test came back inconclusive, but I clearly have Lyme Disease. What you wrote is something I would show to others to help them understand what I am going through. I am seeking help through a Lyme Literate Naturopath and I am now feeling a little bit better after several months and am starting to see the light, but I still have a long way to go. I am so sorry it took SO long for you to get diagnosed. I guess I was lucky in a sense that it only took a year and a half. I thought that was a long time before I heard what you and others went through. Our system is terrible. It is a crying shame and completely unfair that our illness cannot be treated here by a Lyme literate medical doctor. We are so ill and yet we have to find the strength (and finances) to get ourselves to the States for help. It’s beyond my comprehension!

    •  by  admin

      Thank you so much for your comment. Hearing from others who have gone through the same crazy experience as me is comforting and I really appreciate you taking the time to say hello. I wish you a speedy recovery. All the best to you!!

  11.  by  Carla

    Thank you to share your story, Alison.
    Everyone with lyme should do it too!

  12.  by  DMW

    Hi Alison,
    A very well written blog about the lack of help from the medical community in Canada. Sad but so true. You are so lucky that you could afford to go to the US for treatment. I also have Lyme disease, but of course my testing in Canada was negative. I am currently consulting with a naturopath in Calgary (I live in NS) and am doing a modified Cowden protocol. I have seen a lot of improvement using herbs, supplements, and a very limited diet. I am very concerned about people who cannot afford treatment and those who have been misdiagnosed! Testing for Lyme in Canada is a joke! This pandemic is not going to go away and unfortunately it is only going to get worse.

    •  by  admin

      Thank you so much for your comment, DMW. I hear you: the financial burden is so immense! It’s been one of the most difficult things to deal with. It was a very hard decision for me to go into massive amounts of debt in order to get treatment. I really didn’t know what else to do. When it comes to being a Lyme patient in Canada, we’re all against a rock and a hard place. I wish you all the best on your journey through Lyme — you deserve to reclaim your health!

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