"I took a five-year vacation from my life.”
This may sound like a dream, but for Vanessa Farnsworth, it was a nightmare. Before “the vacation,” Farnsworth was outdoorsy and active, loving nothing more than hiking the hills around her home in BC’s Kootenays. The seizures and paralysis began in 2007 with no warning, no build up. At first, her confused doctors thought she had early stage multiple sclerosis. Then six months in, a test revealed Farnsworth had Lyme disease. It would take her five years to begin feeling normal again. The scariest part: that’s typical for the disease that’s quietly spreading its range across much of Canada.
Doctors know little about Lyme disease, a mysterious bacteria infection transmitted by several types of tick. Officially considered a “rare disease” with only 50 confirmed cases annually, patient advocates believe tens of thousands of people suffer from Lyme-like symptoms across Canada, but don’t fit the strict medical definition or have never tested positive. It’s only going to get worse, too. A recent study found that by 2020, 80 per cent of Canadians will live in areas considered endemic for the disease, up 60 per cent from today thanks to global warming and urban expansion — both help boost tick populations.
“The number of Lyme disease cases is going to skyrocket across Canada,” says Farnsworth, who wrote Rain on a Distant Roof: A Personal Journey Through Lyme Disease in Canada, a book that’s part memoir of her experiences and part new science on the disease. “The health care system can’t deal with the sufferers we already have. There’s no way it’s ready for the coming onslaught.”
Her late diagnosis was partially due to her not showing early-stage signs for Lyme, like a rash or flu symptoms. A bull’s-eye rash is often the only guidance doctors receive for identifying the disease. Meanwhile, a Dalhousie University study showed only 20 per cent of cases develop a rash, and only half of those look like a bull’s-eye. Further, of the 66 kinds of Lyme disease identified, the standard Canadian test only catches 23 of them. Many people who receive a test score a false negative. When treatment begins, provincial health guidelines only allow for 30 days of antibiotics, the usual and most effective treatment.
“Even if they want to, the doctors can’t give you more,” says Farnsworth. “They could lose their licence.” Many chronic Lyme disease patients have to travel to the U.S. and pay out of pocket for treatment. When she was cut off, still suffering from tremors and other debilitating symptoms that soon forced her to quit her job, Farnsworth chose the equally expensive naturopath route. For years she was effectively abandoned by the mainstream health care system, while she could barely get out of bed.
“Forcing the patient to go out of country to get treatment shouldn’t be happening in Canada,” she says. But help may be on the way. Bill C-442, a rare private members bill unanimously passed through the House of Commons, will push doctors to re-examine the best science, diagnosis and treatment of Lyme disease in Canada. After eight years of frustrations at the hands of the medical system, Farnsworth is barely optimistic.
“Its unanimous approval tells you it’s a pretty weak bill,” she says.
Jim Wilson, executive director of the Canadian Lyme Disease Foundation, is more hopeful.
“Right now the health care system is doing a terrible job of dealing with the disease,” he says. “Everyone — politicians, patients, doctors, health care workers — realizes that the situation is untenable. Bill C-442 will force the government to sit at a table with patients and experts. The science will get a voice.”
In addition, universities across the country are ramping up research programs that look into ticks and Lyme disease, including examining potential links between Lyme and MS, chronic fatigue and lupus.
“These may actually be Lyme disease,” Wilson says.
Back in the Kootenays, Farnsworth considers herself better, though she has permanent brain damage and gets exhausted if she walks more than a few hundred metres. She misses hiking the most.
“I was following all the rules. I was outdoorsy and active. I am supposed to be healthy,” she says. “I never saw this coming. That’s the scariest part.”