Jim Wilson, founder of the Canadian Lyme Disease Foundation (CanLyme) was in an Ottawa hotel room, in lockdown, with his curtains drawn when the Georgia Straight caught up with him. It was October 22, that terrible day of the shootings at Parliament; Wilson had flown from B.C. to the nation’s capital to testify in front of a parliamentary committee regarding Bill C-442, an Act Respecting a Federal Framework on Lyme Disease.
Parliament resumed the day after the tragedy, but Wilson doesn’t know when discussion of the bill will be rescheduled. Until then, he’ll continue his fight to improve the detection, diagnosis, prevention, and treatment of Lyme disease, which he has and which is the most common tick-borne illness in North America.
“It is so important that the patients—and they’re experts—be brought into the policymaking process,” Wilson said. “We’ve been dictated to by a really small group of Canadian specialists on Lyme disease who are part of the Association of Medical Microbiology and Infectious Disease Canada. They just put out a position statement on Lyme disease and it’s archaic.
“They don’t acknowledge the prevalence of Lyme disease,” he said. “It’s much more prevalent than what they’re reporting. They’re relying on the same old two-tiered testing process that is limited to looking for only one strain [of bacteria] of one species. What they’re doing right now is trying to calm the public into this state of complacency.”
Some experts say that Lyme disease could become even more commonplace with global warming.
The number of reported cases across the country increased from 128 in 2009 to an estimate of more than 500 in 2013, according to a June 3, 2014, statement before the parliamentary committee by Steven Sternthal, acting director general of the Centre for Food-borne, Environmental and Zoonotic Infectious Diseases, a division of the Public Health Agency of Canada’s Infectious Diseases Prevention and Control Branch.
Sternthal declined to be interviewed, but in his statement he explained that Lyme disease is one of the most rapidly emerging infectious diseases in North America. Its spread is being driven in part by climate change, he noted, as the ticks move here from endemic areas of the U.S.
“Moving into Canada, it is impacting our most densely populated regions,” Sternthal told the committee. “We anticipate the disease will affect over 10,000 Canadians per year by the 2020s.”
The estimated number of cases is at least three times lower than actual cases, Sternthal noted, because people may not seek treatment for milder symptoms or may be misdiagnosed because doctors are not always aware of the range of signs. According to CanLyme, symptoms can include everything from hair loss and headache to blurry vision and confusion.
The effect of climate change on the prevalence of Lyme disease is something the B.C. Centre for Disease Control (BCCDC) is monitoring.
“We’ve been involved in some modelling to determine if the range of the black-legged tick could change with climate change, and the answer is yes: the black-legged tick could move further north and have new habitat,” said Dr. David Patrick, medical epidemiology lead for the BCCDC’s antimicrobial resistance and director of UBC’s school of population and public health. “Certainly, if we experience real warming, we’ll see a change in the distribution of mosquitoes and we’ll see a change in the distribution of ticks.”
He also said, however, that the impact of global warming on tick distribution could be more pronounced in other parts of the country than in B.C., which has a unique climate and ecology.
“There’s no doubt it’s increasing around Lunenburg and southern Nova Scotia and the Niagara region,” he said. “In B.C., we’ve been looking actively to see if it’s increasing and the answer is no. We see Lyme bacterium in about one in 200 black-legged ticks in B.C., and that has not changed in a long time. It’s the same with Washington and Oregon.”
CanLyme board member and entomologist Janet Sperling, who is a PhD student in Alberta studying the microbiome of the black-legged tick, said global warming is having more of an effect on the spread of Lyme disease in eastern parts of Canada than in B.C.
She also maintained that people here need to be vigilant about protecting themselves from ticks not just in the summer months—when awareness campaigns typically take place—but in the wetter, colder months.
“You want to cover up and always be mindful that you could run into ticks,” she said by phone, noting that bugs may also carry a genus of bacteria called Rickettsia. “In the summer months, you’re more likely to be wearing shorts and T-shirts, whereas in November you’re more likely to be wearing long pants.
“Based on submissions by people who have been affected by Lyme disease, the summer months are the least likely time to find Lyme ticks in B.C. and yet at the same time [they are] the most likely months for the BCCDC to go looking for ticks,” she added.
Wilson said he contracted the illness in 1991 while living in Dartmouth, Nova Scotia, but only got diagnosed years later after relocating to Squamish. He said he was extremely ill until he began taking several rounds of antibiotics.
“I went from being so sick to getting my life back,” Wilson says. “It was a long process, not just a short round of antibiotics. Every time I quit taking antibiotics, I would relapse. I lost my brain function. I had neurological issues. I had muscle spasms and tics, and my legs were like rubber. I choked on my food and drooled when I talked….It was horrible.”
Wilson said his two kids also contracted Lyme within one year of each other in B.C., but doctors here told them they were disease-free. After sending their blood for testing in the U.S., they got the diagnosis. His family’s experience with the illness is what prompted him to start CanLyme.
The BCCDC’s Patrick cautioned that there is much misinformation on the Internet and claimed that testing done in Canada is backed by rigorous research.
“It is true in some places that doctors have missed a diagnosis early, and that has led to problems,” he said. “But a problem that is larger, in my view, is that people are being persuaded by the Internet to send their blood away for tests in alternative U.S. labs claiming to be Lyme specialty labs, and these labs are observably giving a whole bunch of false-positive results. I’m hearing stories like this every week: a lady diagnosed with Lyme who’s treated with copious amounts of antibiotics then proceeds to lose her vision…and the problem is this diagnosis of Lyme has delayed the diagnosis of MS. So when I say I’m worried about this test, it’s not because I’m trying to dump on the labs but because I’m concerned about patient safety in B.C.”
If you get bitten by a tick, you want to remove it quickly and put it in a jar with a lid, Patrick said; this necessitates a quick body inspection after outdoor activities in areas that host black-legged ticks, especially for children. The arachnid can be submitted to a lab and tested for Lyme. Sperling said ticks like to hide in places like your hair, groin, or belly button. She said people who are concerned about having contracted a tick-borne illness should seek medical attention.
“If you think there’s something wrong, go and get a second opinion,” she said. “Ticks are a problem, [but] don’t let them prevent you from getting out and doing exercise.”