Lyme disease controversy spreading across Canada

Mitch Thibodeau recently set off by car from his Calgary home to travel eastward across the country on a mission to find a doctor to continue his long-term treatment for Lyme disease.

Diagnosed with the illness, which 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 Thibodeau can find no physician in his home province who will continue the treatment. 

'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.' — Dr. Gerald Evans, president of the Association of Medical Microbiology and Infectious Disease Canada

"Once they run out, I'll be in big trouble," Thibodeau, 37, says of the drugs, which are intended to eradicate the corkscrew-shaped bacteria that can burrow into cells throughout the body if not treated soon after infection.

The former recreational long-distance runner now works only part-time. 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 and is 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 Lyme, Conn., in 1975, has become the source of a brewing controversy.

Epidemic levels?

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."

Artsob acknowledges 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."

'Lyme leper'

The Canadian Lyme Disease Foundation believes the Public Health Agency of Canada and other official bodies are gravely underestimating the burden of Lyme disease in the country. The group contends that the annual infection rate is closer to 2,000 cases and could be as high as 20,000.

Mary de Lisser of Abbotsford, B.C., a spokeswoman for the group, recalls developing a rash shaped like a bull's-eye on her calf while camping on Vancouver Island in 2002. Over time, she developed increasingly severe pain and weakness throughout her body that put her in a wheelchair for several months, and she suffered cognitive problems that left her unable to work.

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 Ernie Murakami, a Hope, B.C., family physician who saw his first tick-inflicted Lyme case in 1994.

De Lisser's 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.

The Lyme disease foundation 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 the panel members that created them. A new panel is being convened.

'It has to be more than just three weeks'

Murakami, who says he 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 can 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."