Lyme disease patients hope conference fixes 'woefully inadequate' healthcare

Canadians living with Lyme disease say they hope a national conference in Ottawa helps fix the many issues they see with the way Canada diagnoses and treats the disease.

Conference part of bill to create national framework for prevention, treatment and awareness

Lesley Fleming has Lyme disease and has had to put her career on hold because of off-and-on symptoms such as "beet-red" eye irritation, extreme fatigue, headaches and joint pain. She's going to a national conference on Lyme disease care in Ottawa that runs Sunday to Tuesday at the Government Conference Centre. (Andrew Foote/CBC)

Canadians living with Lyme disease say they hope a national conference in Ottawa helps fix the many issues they see with the way Canada diagnoses and treats the disease.

The three-day conference with politicians, patients and scientists is part of the push to establish a national framework on the disease, caused by bacteria carried by infected black-legged ticks.

It comes after federal Green Party leader Elizabeth May got a private member's bill passed to come up with a framework on Lyme disease prevention, treatment and awareness.

The head of the Canadian Lyme Disease Foundation, one of three chairs of the conference, said patients have so far been "totally excluded" from discussions about how the disease should be handled.

"The major topics the bill covers are diagnostics, prevention, treatment and surveillance. Each of those are woefully inadequate at the moment, as far as what could be done," Jim Wilson said.

Patients want to be seen as equal partners in discussions about Lyme disease in Canada — and that should be an "extremely important" discussion at the conference, Wilson said.

Many go to U.S.

Ottawa's Lesley Fleming was diagnosed with Lyme disease in July 2013 by a doctor in Plattsburg, N.Y., after years of going to Canadian doctors to try and find out why she was experiencing severe eye inflammation, headaches and fatigue.

Symptoms of Lyme disease, which is spread through ticks, include fever, headache, fatigue and a bull's-eye rash. (Associated Press/Victoria Arocho)

She said she and her partner have spent more than $75,000 to treat her illness in the U.S. because Canada's healthcare system can't get the job done.

"I would like to see us be able to be cared for here in Canada, those who are newly infected and those, like myself, who have chronic Lyme disease," Fleming said.

"There are a lot of people like myself across the country."

Dr. Gregory Taylor, Canada's chief public health officer, said there were at least 700 new cases of Lyme disease in Canada last year compared to around 100 in 2009.

"It's complex and difficult and it's growing," he said.

"We have modelling and estimates that the cases may increase to 10,000, 15,000, 20,000 [a year]. That may be where it's going. We hope not, but that's part of the knowledge base we need to gain."

Ottawa Public Health said there were 70 confirmed or probable cases of Lyme disease in the city in 2015, up from 22 the year before.

Research can tackle controversy

Taylor said Canada is doing the best that it can to manage Lyme disease and that more research is needed on some of the controversial diagnosis tests and treatments many patients in Canada want to have available in the country.

Dr. Gregory Taylor, chief public health officer of Canada, says Lyme disease rates may be going up because ticks that carry it are moving north. (Adrian Wyld/Canadian Press)

"What we use at the National Microbiology Laboratory in Winnipeg is a set of diagnostic criteria, which is the same as the [Centers for Disease Control] in the U.S. and that Europeans use, as well. It's difficult to interpret," he said.

"There are some private labs in the U.S., which are using the same tests but interpreting them differently and then what we would call a negative test for Lyme [disease], they'd call a positive test. That's some of the controversy there."

The Canadian Lyme Disease Foundation says the tests are in fact different and the government's tests are out of date compared to ones used by those private labs.

Taylor said there's also disagreement and research needed on how long Lyme disease patients should be given antibiotics after they're diagnosed.

Fleming, who has had to step away from her career as a social worker because of her symptoms, said she'll be at the conference with the hope it brings a change in attitude, along with more funding.

"The main work that I did when I was working as a social worker was in the HIV/AIDS field… it took a national strategy — the very first national strategy was back in the late 1980s put forward through the government of Canada — and that brought HIV/AIDS to the table," she said.

"My hope is that this first strategy for Lyme disease will bring Lyme disease to the table."

The conference begins Sunday night with remarks from chairs Taylor, Wilson and Dr. Daniel Gregson of the Association of Medical Microbiology and Infectious Disease Canada, as well as a public forum.

Health Minister Jane Philpott and May will speak at the conference on Monday.