Lyme disease response requires collaboration in Canada, researcher says

A Queen's university researcher says Canadian Lyme disease experts need to work more collaboratively to treat the growing number of people who contract the debilitating tick-borne illness.

Steven Liss, the vice principal of research at Queen's University, is proposing a Canadian research network for Lyme disease that would improve the current methods of tracking its prevalence.

"It's frustrating we see many aspects of Lyme disease can be addressed through public education, better diagnosis and treatment options perhaps. In Canada there hasn't been a lot of attention and that's left people in very debilitating circumstances."

Liss made his comments at a two-day symposium at Queens University where Canada's leading experts on the disease are meeting.

70 confirmed or probable cases in Ottawa in 2015

Lyme disease has emerged as a major public health issue over the last few years as the black-legged tick which carries the bacteria that causes the disease has migrated north from the United States.There are now two types of ticks in Canada that carry the disease.

If the tick that feeds on blood is not removed from the skin within 36 to 48 hours,the bacterium can enter the body.If left undiagnosed and not treated in the first few weeks after that, Lyme disease progresses in the body and can lead to serious health problems including facial palsy, memory loss, meningitis, depression and liver damage.

According to Ottawa Public Health, the agency that tracks infectious diseases, there were 22 confirmed or probable cases of Lyme disease reported in 2014. In 2015 that number more than tripled to 70 cases.

Liss says a research network for Lyme disease would be the first of its kind in Canada, and it could be housed in Kingston, Ont.

The approach is abysmal, we don't have a national strategy.- Maureen Landry, who goes to the U.S. for treatment.

He added it could "draw on existing resources and multidisciplinary expertise from Queen's University and public health agencies from across the country."

Canadian doctors need to do more, says woman with disease

But 67-year-old Maureen Landry of Ottawa isn't convinced a research network is needed to improve the quality of life for those living with Lyme disease.

She says before a research network is created she wants all doctors to acknowledge that Lyme disease is present in Canada. She says that's not the case now.

"The approach is abysmal, we don't have a national strategy. No effective lab testing in Canada... it's 70 percent ineffective and we also have no physician training in clinical skills and diagnosing."

Landry was diagnosed with the illness in 2007 and says for the first two years after that she rarely got out of bed because she was so sick.

She says there is evidence based data on how best to treat Lyme disease.

"There is incredible science and research that the international community has done and Canadian physicians are refusing to look at. But physicians need to catch up and learn what the best practices and the standards of care that are working for patients out there are."

Competing medical guidelines

Landry says the real problem is Lyme disease sufferers are caught in a struggle between competing physician groups over how to treat the illness.

There is incredible science and research that the international community has done and Canadian physicians are refusing to look at.- Landry

She says many Canadian doctors are bound by the guidelines of the Infectious Disease Society of America, while others in the United States use the protocol from the International Lyme and Associated Diseases Society, which advocates for a much longer or repeated use of antibiotics.

For the last five years, Landry has been under the care of a Lyme disease doctor in upstate New York who prescribes antibiotics for her longer than two weeks.

Since she started treatments in the United States, she says she's able to carry out a relatively normal, pain-free life.

But Landry points out that while she feels much better, she's also spent more than 100-thousand dollars travelling to New York and paying for drug treatments there.