One hundred Lyme disease sufferers gathered Friday on Parliament Hill to bring attention to a disease they say Canadian doctors are frequently failing to identify.

They want better testing for the disease and more federal money devoted to research into the affliction. Many in the group say they were misdiagnosed by their physicians.

Spread by ticks that carry the bacterium, Borrelia burgdorferi, the disease is predominantly found in parts of British Columbia, southern and eastern Ontario, southeastern Manitoba and parts of Nova Scotia.
(CBC)

Lyme disease is not a nationally reportable disease in Canada, according to the Public Health Agency of Canada (PHAC), meaning there are no statistics available on its prevalence.

Spread by ticks that carry the bacterium, Borrelia burgdorferi, the disease is predominantly found in parts of British Columbia, southern and eastern Ontario, southeastern Manitoba and parts of Nova Scotia.

It often begins with symptoms of fever, chills and a bulls-eye rash and if untreated can progress to muscle and joint pain, heart palpitations and central nervous system disorders, according to PHAC.

'I got incredibly ill'

That's what happened seven years ago to Joan McComas, a former professor at the University of Ottawa.

"I got incredibly ill with flu-like illness, and then started having neurological symptoms very close after that. And things just went from bad to worse," she told CBC News.

McComas began experiencing incredible fatigue, difficulty walking, and could no longer focus her thoughts. She said her doctors were puzzled and they tested her for the disease, but her results came back negative.

Months later, a pharmacist urged her to have the tests re-done in the United States, and this time the results were positive. She said doctors here still didn't believe it.

"Here in Ottawa, they believed that the tests from the U.S.A., from the accredited labs, are false-positive tests. And I was refused treatment [in Canada]."

McComas believes part of the problem is how Lyme disease is seen in Canada. She said that while in the U.S. it's recognized as an epidemic, north of the border it is still relatively uncommon and often goes undiagnosed.

Luckily, after paying $15,000 out of her own pocket for treatment in the U.S., she's now almost entirely better.

Hard to spot

Dr. Robbin Lindsay, who works in PHAC's Zoonotic Disease and Special Pathogens section, admits the disease is difficult to recognize, and tests are not always accurate.

"This is really a disease that can be diagnosed based on clinical symptomology, so it's the doctor that makes the diagnosis, primarily based on the symptoms that the person exhibits, and their history of exposure — or potential exposure — to ticks." 

On Friday, McComas joined others on Parliament Hill to bring attention to the issue.

"We're here today to try to get somebody to recognize that Lyme disease is a growing issue."

"Several of us go through years and years trying to get a diagnosis, and by then the damage is done," she said.