05/18/2014 12:23 EDT | Updated 07/18/2014 05:59 EDT

Lyme disease diagnosis a battle in Quebec, patients say

Margaret Glaser says the past 12 years she’s spent living with undiagnosed Lyme disease has been like “living in hell” — not only because of the severity of her symptoms but also because she spent a huge part of her life in an out of doctors’ offices who, when they couldn’t determine what was wrong with her, told her it was in her head.

“For 12 years I went to over 25 doctors in the health care system in Quebec. Some family doctors and some specialists with a host of different issues,” Glaser said.

“And the conclusion after routine tests was always that the problem was in my head, psychosomatic, that at best I should just see a psychiatrist.”

Unfortunately, that’s the case for many Lyme disease sufferers in Quebec, said Manon Laplante, who organized a protest in downtown Montreal on Saturday to bring attention to the lack of information Quebec doctors appear to have on Lyme disease.

Lyme disease, which originated in Lyme, Connecticut in the 1970s, is transmitted to humans through tick bites. The side effects can be devastating: untreated or improperly treated patients can develop severe and chronic neurological, joint and heart issues, among other painful conditions.

Disease often misdiagnosed

“I contracted Lyme disease about five years ago and for two years I was just in the medical system trying to figure out what was happening to me,” Laplante said. After a battery of tests, she said they told her, “We don’t know what you have. Your tests look like you’re healthy to us so you’re probably depressed.”

According to Laplante, doctors in Quebec don’t even have Lyme disease on their radar when it comes to diagnosing illnesses that resemble it. She said often times Lyme disease is misdiagnosed by doctors as fibromyalgia and chronic fatigue.

“The disease itself is a problem, but what we’re facing here is a systematic refusal of many doctors to even consider Lyme disease as a possible problem or threat. […] People today are going to their doctors with symptoms, with a red rash, with even a tick, and they’re being told that Lyme disease is not here in Quebec,” Laplante said.

“This disease is real, this disease is in Quebec and has been in Quebec for many years,” she continued.

She said a recently released fact sheet that advises Quebecers of the danger of Lyme disease is too little too late. Laplante said more needs to be done to train doctors to test for Lyme disease.

François Milord of the Quebec Public Health Institute agreed. 

He confirmed that disease-carrying ticks have crossed into Quebec, and said more doctors are reporting cases of Lyme disease, even if it is still relatively rare.

"We should certainly work more with physicians to improve their knowledge of the disease and to help them to know how to take care of patients," Milord said.

U.S. diagnosis

In Glaser’s case, she was only diagnosed five weeks ago after travelling to the United States for testing.

“I had a test done in an American lab and I tested positive for both the CDC standard, the New York standard and the standard from the lab, and I definitely have presence of the bacteria in my body,” Glaser said.

She is now on six different kinds of antibiotics, and expects to be for a minimum of one year. She was told treatment could extend to two or three years.

Glaser, who is in her early 30s, is unable to cook meals, shower by herself or go to work. She uses a wheelchair because of how severe her symptoms are.

She hasn’t yet gone back to a Quebec doctor with her American diagnosis in hand because of how stressful going through the province’s health care system has been. She said she may consider it in the future, if only to save money on prescriptions.

“To be told one more time that it doesn’t exist and that I’m not sick, I don’t think that I could handle that,” she said.