Ticks that may carry Lyme spreading in Canada, as is controversy over disease
Mitch Thibodeau recently set off by car from his Calgary home to travel eastward across the country on a mission to find a doctor.
Diagnosed with Lyme disease that he believes he contracted from an infected tick in 2000, Thibodeau has been on antibiotics for the last two years. But the B.C. doctor who has been prescribing the drugs has retired and he can find no physician in his home province who will continue such long-term treatment.
"Once they run out, I'll be in big trouble," Thibodeau says of the drugs that are intended to eradicate the corkscrew-shaped bacteria that can burrow into cells throughout the body if not treated soon after infection.
He planned to travel to Manitoba, where he's heard there's a physician who treats Lyme disease and supports the idea of prolonged antibiotic therapy. If that fails, he will go on to Toronto to try to see another doctor specializing in Lyme.
"I'm going to try. I mean that's all you can do, right?" says Thibodeau, 37, once a recreational long-distance runner who was working towards becoming an industrial engineer.
Able to work only part-time as a Canada Post driver, he says his life plans have been put on hold by years of Lyme-induced debilitating pain in his hip, neck and shoulders, as well as by cognitive problems like short-term memory loss.
Stories like Thibodeau's are rife when it comes to Lyme disease, which is caused by the bacterium Borrelia burgdorferi that's transmitted through the bite of infected black-legged ticks in parts of Canada and the United States and the Western black-legged tick in British Columbia.
The disease, first identified in Old Lyme, Conn., in 1975, has also become highly controversial.
Patient advocacy groups contend the disease is on its way to reaching epidemic proportions in Canada and is being improperly diagnosed and treated, while the bulk of the medical community raises a skeptical eyebrow to that assertion, saying there is no scientific evidence that cases are raging out of control or that long-term antibiotic treatment is warranted.
What is known is that there are several areas in Canada where the ticks are established - among them, parts of Nova Scotia, southern Ontario, Manitoba and B.C. - and they appear to be making further incursions.
"We have been documenting new locations for the tick, indicating spread," agrees Harvey Artsob, chief of zoonotic diseases for the Public Health Agency of Canada. "This year, we have seen evidence for the first time that there may be established populations in New Brunswick. We don't know if any of the ticks are infected."
Tests of ticks sent into PHAC's Winnipeg microbiology lab from veterinarians across the country suggest about 10 to 12 per cent of the tiny blood-sucking insects have the infection, which they pick up after biting white-footed mice or deer mice that carry the disease.
About 20 to 60 human cases of "disseminated" Lyme disease have been reported each year in Canada, says Artsob, referring to a later stage of the disease in which the bacteria have spread beyond the bloodstream into tissues, where they can cause significant damage.
Artsob concedes the annual caseload could tally "in the low hundreds" because early cases treated promptly may not be captured in reporting data.
"We sometimes hear some people say there are thousands of cases. We absolutely disagree with that. We don't think the numbers are that high."
Among the patient advocacy groups that believe the illness is far more prevalent is the Canadian Lyme Disease Foundation, founded in 2003.
Mary de Lisser of Abbotsford, B.C., a CanLyme spokeswoman, recalls developing a bull's-eye rash on her calf while camping on Vancouver Island in 2002, but she knew nothing about Lyme disease and gave it no thought. But over time, she developed increasingly severe pain and weakness throughout her body that put her in a wheelchair for several months and cognitive problems that left her unable to work.
She was sent by her family doctor to "specialists galore," but none had any idea what was wrong with her, says de Lisser, who was told she might have multiple sclerosis, lupus or fibromyalgia.
It was not until she began searching the Internet that she came across photos of the telltale circular rash she had experienced - but her doctors were reluctant to even consider Lyme disease, insisting it wasn't present in Canada.
"I was a Lyme leper," de Lisser says.
She did eventually get diagnosed and treated by Dr. Ernie Murakami, a Hope, B.C., family physician who saw his first tick-inflicted Lyme case in 1994.
De Lisser says CanLyme believes the Public Health Agency of Canada and other official bodies are seriously underestimating the burden of Lyme disease in the country. The group contends that annual infection rates are more likely 2,000 cases a year and could be as high as 20,000.
The group has called on Ottawa to institute a national Lyme disease strategy. It wants better diagnostic testing - it says the ELISA antibody test used in Canada as a first-line investigation results in too many false negatives and a second test known as the Western blot is far superior. Many patients have resorted to sending blood samples to U.S. labs for Western blot, paying anywhere from $400 to $900 for what they deem a more accurate result.
CanLyme is also calling for the Canadian medical community to create its own prescribing guidelines that would include long-term antibiotic treatment. Currently, doctors follow guidelines from the Infectious Diseases Society of America, which strongly objects to continuing the drug therapy beyond 30 days, saying patients gain no benefit and may suffer potential harm.
But the IDSA guidelines, updated in 2006, have come into disrepute after Connecticut's attorney general began investigating the medical body over alleged conflicts of interest by panel members that created them. A new panel is being convened.
Murakami, who has treated about 3,000 Lyme disease cases at his B.C. family practice since 1994, says doctors are deeply split over the IDSA guidelines.
"The guidelines have got to be changed," he says, asserting that once the bacteria becomes embedded in tissues like the heart, brain and nerves it is very difficult to kill.
"This is the difficulty that doctors don't understand. That's why it has to be more than just three weeks of antibiotics," says Murakami, who has a degree in bacteriology and immunology.
"There are lots of people suffering."
But Dr. Gerald Evans, president of the Association of Medical Microbiology and Infectious Disease Canada, says overuse of antibiotics can lead to such complications as the bowel disease Clostridium difficile and give rise to drug-resistant bacterial strains.
Furthermore, Evans says the advent of advocacy groups on the Internet has turned Lyme into the diagnosis of choice for many people.
"And I'm frankly very concerned that Lyme disease has been grabbed by a lot of people who are trying to find explanations for a whole host of disorders which continue to defy medical diagnosis and management."
"So the extreme part of this, unfortunately, is that there are some people who have got the idea that there's a plot out there, that we're trying to hide how many people have Lyme disease," he says.
"There's no evidence whatsoever that we're now seeing a huge epidemic of Lyme disease. There's no evidence that it's being unrecognized by physicians all over the place."
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