Under the Cover: The Myth of Lyme Disease in Canada

When I first sat down to write what would become Rain on a Distant Roof: A Personal Journey Through Lyme Disease in Canada, I was under the impression that Lyme was rare. Indeed, when I was diagnosed in 2007, I had the first confirmed case of Lyme disease in my community’s history and there were just 13 confirmed cases in British Columbia and roughly 50 cases in all of Canada that year. Now that’s a rare disease. More people were struck by lightning in 2007. Significantly more.But during the course of researching this book, I began to encounter more and more people who either had the disease themselves or who knew someone who had it. It soon became apparent that Lyme was much more widespread than I had been led to believe.

Since the publication of Rain on a Distant Roof, I’ve heard from legions of Canadians from every province and every walk of life who have been diagnosed with Lyme. Most of these sufferers share more than just a disease, they also share something a little more dubious: They don’t officially exist.  The vast majority of Lyme disease sufferers in this country are never recorded in the official statistics despite having been diagnosed and treated by doctors, creating a bizarre situation where countless thousands of Canadians have been determined to be suffering from the disease but only a fraction are officially counted. There are a variety of complex (and some would say arbitrary) reasons for this, but what it boils down to is that Lyme disease continues to be considered rare in this country at a time when there is a growing body of evidence, including validated research, that points to a looming public health crisis, leaving Canadians with a false sense of security.Avril Lavigne has been making headlines in recent months thanks to her surprise announcement that she has been diagnosed with Lyme. When she first went public with her story, I was inundated with messages from people who thought I would want to know about it. News stories referred to her case of Lyme as being severe although from everything I’ve seen, it strikes me as a fairly typical case; so typical that I was able to guess many of the details before I heard them. That’s not because I’m psychic. It’s because I’ve heard those details so many times before from so many other Canadians that they are etched into my brain.By her own account, multiple doctors failed to recognize Avril Lavigne’s illness for what it was and suggested she was crazy or depressed. She was left, desperately ill, to do her own research, find the only disease that matched all of her symptoms, then locate a doctor who specialized in the diagnosis and treatment of Lyme disease. These are the hallmarks of someone who has been diagnosed with a form of Lyme disease that has become known as “chronic Lyme”, something that is not officially recognized in Canada.Reports state that Avril believes she contracted the disease in Ontario in the spring of 2014. Regardless, she won’t be counted in the Canadian statistics no matter how many times she talks to the media about her illness. As a chronic Lyme disease sufferer, she is one of our healthcare system’s ghosts, but unlike most of its ghosts, her fame makes her hard to ignore.Although Avril doesn’t specifically say so, I’m willing to bet that her treating physician isn’t in Canada. Most Canadian chronic Lyme disease patients must leave the country to seek treatment in the United States or Europe. As far as public health authorities are concerned, these patients do not exist. They are ghosts who insist on rattling their chains in the media when health authorities would strongly prefer that they didn’t. And we should collectively thank them for doing so, because Lyme is spreading across the country with breathtaking speed.According to official projections, within five years, 80% of Canadians will be living in areas with breeding populations of Lyme-infected ticks. Many are living in those areas already. Most don’t know it and, sadly, neither do their doctors, making it challenging for sufferers to get an accurate diagnosis. Some are misdiagnosed with diseases thought to be more common than Lyme, while others receive no diagnosis at all for many months or even years. And since Lyme is only easily treated when it’s diagnosed early, anyone with a delayed diagnosis finds themselves facing long, difficult courses of treatment that can go on for years with no guarantee of success. Those courses of treatment are predominantly coming from doctors outside of Canada (or naturopaths in Canada) and, as a result, most Lyme patients are paying the considerable costs of treatment out of their own pockets. Not exactly a triumph for universal healthcare.Things need to change. Canadian researchers have begun to talk about Lyme disease in terms of a rising epidemic. Doctors are looking for better direction on how to diagnose and treat patients. Politicians are demanding answers. The media are ramping up their coverage. And all eyes are on public health authorities who are fumbling, badly, trying to find a way out of an increasingly acrimonious predicament that has placed them at odds with the public they are bound to serve.* * *Vanessa Farnsworth has published more than 100 columns and articles (including several on Lyme disease) in national and regional publications, including Canadian Gardening, Canadian Living, Cottage, Garden Making, The Creston Valley Advance, The Grower, Harrowsmith Country Life, Kootenay Life East, Route 3, and Vitality Magazine. Her literary fiction has been published in journals across Canada and in the United States, including The Dalhousie Review, dANDelion, The New Quarterly, PRECIPICe, Qwerty, and Reed Magazine. You can learn more about Vanessa Farnsworth’s Lyme Disease journey in her book Rain on a Distant Roof and visit her website for more resources.