Ottawa nurse must go to U.S. to seek Lyme disease treatment
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Like most Lyme disease patients in Canada, Dawn Lavarnway doesn’t remember when she was bitten by the tick that gave her the crippling illness – but she knows when she found out Canada’s health system wouldn’t treat her for it.
The Children’s Hospital of Eastern Ontario nurse tried to book an appointment with an infectious disease specialist to get a prescription for chronic Lyme disease because her symptoms have persisted ever since her June 8, 2009 diagnosis. They include fatigue, chest pain, difficulty walking, and mood swings.
In September, she received a letter from The Ottawa Hospital saying routine antibiotics for tick bites is not an option. The hospital said it follows the 2006 Infectious Disease Society of America guidelines, which limits treatment to a maximum of 28 days.
Now, the 36-year-old is heading to the U.S. in January to see a doctor to get the long-term treatment she is being denied in Ottawa.
She suspects she contracted the illness on a hiking trip in Gatineau Park or during a visit to a petting zoo in Dryden, Ontario a couple years before her diagnosis.
“I feel like I’ve spent (13) years looking after other people working for a healthcare system and when I need it, nobody will help me,” Lavarnway told Metro on Wednesday.
"It’s been a lot on me, my parents, my friends. I have no life. I don’t do anything now because I have no energy. The symptoms are brutal.”
The doctor she is seeing, Dr. Maureen McShane, told David Suzuki’s The Nature of Things program in September that at least 635 of her 700 patients who visit her Plattsburgh, N.Y. office come from Canada.
Lavarnway had her blood work sent to the U.S. last summer and a test came back positive for Lyme disease, she said. This common practice by Canadians is “strongly discouraged” by The Ottawa Hospital, the letter said, because private, American clinics do not follow Ontario testing standards.
“We will not consider positive results from these laboratories as being indicative of Lyme disease,” the letter reads.
Well, she’s going anyway. Her friend, Moriah Lepage, set up an online fundraiser to help with the traveling and medical costs.
“They’re just trying to do whatever they can because they can’t give me antibiotics and they can’t make it go away,” said Lavarnway. “And they can’t change the doctors' minds.”
'No evidence to support limiting antibiotic treatment to 28 days': Canadian Lyme Disease Foundation
Jim Wilson, a former Lyme disease sufferer and founder of The Canadian Lyme Disease Foundation (CLDF), has no idea why Canadian hospitals still follow American guidelines from 2006 on how to treat Lyme disease.
“They’re very committed to the United States policy for some reason, rather than setting their own policy,” he told Metro Thursday by phone from B.C. “We’ve tried to interject into the policy-making decisions (with) the patients and their experts’ perspective, but have been refused at each time.”
The charitable organization wants to change the government’s perception that it ought to follow American guidelines, which in many cases, U.S. doctors don’t even follow themselves.
“The States have enacted legislation allowing these doctors to step out of the grip of the college who impose these terrible guidelines,” said Wilson, adding that Canadian doctors who ignore them face being shut down by their provincial colleges of physicians.
“And there’s absolutely no evidence to support limiting antibiotic treatment to 28 days. It doesn’t work with disseminated or chronic Lyme disease.”
Patients like Lavarnway have also pointed out that the diagnostic method used by Canadian doctors is also flawed and Health Canada knows it.
The federal agency noted in the October 2012 issue of its Canadian Adverse Reaction Newsletter that currentl Lyme disease test kits have been found to have, “limitations of sensitivity and specificity, particularly when used on patients with acute infection, which is usually easily treated with antibiotics.”
The kit only tests for one strain of Lyme disease, B31, which Canadian doctors use to confirm a diagnosis.
“It’s only a laboratory strain. They should be using strains from the wild and they should be using human-derived strains, not tick-derived strains,” said Wilson. “Why they’re still employing that is beyond anybody’s rationalization.”
Green Party leader calling for national Lyme disease strategy
Part of Elizabeth May's private member's bill, C-442, aims to address the diagnostic deficiency that Health Canada acknowledged in 2012, but the proposed legislation won't be up for debate until next spring.
The National Lyme Disease Strategy Act calls for increased public awareness campaigns about the disease, better diagnosis and treatment, and a national strategy to find a cure.
"It breaks my heart to see families struggle with the costs of going to the U.S. to get treatment for family members with Lyme disease," wrote May in an Oct. 7 article in The Hill Times. "Surely sharing best practices to decrease the extent of Lyme, the reliability of diagnosis and the research work toward improving treatment regimes is in all of our interests."