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My world turned upside down when I was diagnosed with Late Stage Chronic Lyme disease in 2014.  For more than a decade, I fell through the cracks of the health care system and lost everything - my health, my career as an Oncology Nurse, my ten-year marriage, a baby and my life savings. 

Lyme disease is caused by bacteria passed on from a tick bite.  Impacting everyone differently, this terrible disease can affect any organ or system in the body.  In my case, over many years I experienced severe symptoms from head-to-toe, including: debilitating pain and fatigue; hormone imbalances; infertility; joint swelling; thyroid problems; gastrointestinal problems; difficulty walking; cognitive issues (brain “fog” and memory issues); mental health issues (depression, anxiety and suicidal thoughts); and horrific neurological symptoms including frightening stroke-like signs as well as attacks that resemble seizures.  My story is sadly not unlike so many others who live and suffer with Lyme disease.

As I tried to navigate the healthcare system in Canada, I literally saw dozens of doctors and many said that what I was going through was “all in my head.” But I knew this was no imaginary illness.  It was shocking to discover that Late Stage Chronic Lyme disease is not appropriately recognized in this country and some physicians in Canada have had their license revoked for prescribing "long-term" antibiotics.  There is a limited number of physicians treating this disease but they have extremely long wait lists (months to years), others have closed their practices to new patients, and some provide fee for service which is not affordable or accessible for many Canadians.  As a result, many Canadians go undiagnosed and untreated.

I completed five months of treatment in Florida in 2016 and am very grateful for the treatment I received there because it has provided me with a new lease on life.  That said, I am still left wondering why I had to go to another country and considerable personal expense to get treatment that is available in Canada but unattainable for someone with Late Stage Lyme disease.  This is wrong and we need to all raise our voices to ensure the leaders of our country hear us when we declare that this needs to change.

Canada prides itself on providing universal and world-class health care, yet I had to pay out of pocket for treatment after being denied funding for out-of-country treatment by the Ontario Ministry of Health.  The decision is based solely on the provincial Health Insurance Act (HIA).   The HIA discriminates against people living with Lyme disease as it is impossible to satisfy the application process given the current terms of the Act.  The main aspects in the Act that need addressing are: requiring the signature of a specialist in Ontario – there are no Infectious Disease doctors in Ontario who recognize and treat Late Stage Chronic Lyme disease.  It is also necessary to redefine the terms of acceptable treatment – as it stands many treatments that are used successfully to treat Lyme disease outside of Canada are still deemed experimental here and therefore, ineligible for coverage.  It is important to note that a Private Member’s Bill was passed in 2014, Bill C-442, recognizing that Lyme disease is not appropriately assessed, treated, managed or prevented in Canada.  No Canadian living with Lyme disease has ever received funding to have treatment outside of Canada and many of us still cannot receive appropriate treatment here.

Here is the link to an interview I had last year that briefly discusses the issue of Lyme disease in Canada:

Ontario has an opportunity to step up and be a world leader in treating Lyme disease.  Creating an amendment to the HIA would be an important step in helping Canadians receive funding and accessibility to treatment of this debilitating disease.    We have a collective voice and we can create change.  We can make a difference.  People living with Lyme disease in this country should not have to go bankrupt to treat this illness.  If you believe in universal health care for all, please sign this petition and share it in your community.


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