Lyme disease victims complain they aren't getting proper diagnosis in Canada
According to Health Canada, there's a small but growing population of Canadians diagnosed with Lyme disease.
It's a tick-borne bacterial infection that if unchecked, could attack the central nervous system and the heart.
But members of a local Lyme awareness group believe those diagnosed here in Canada represent only a fraction of people actually living with Lyme disease.
Back in 2007, Cheryl Abbate was walking through Point Pelee National Park.
"When we got home that evening, I realized I had a tick burrowing beneath my skin," she says.
"I had the test, which came back negative, and I thought, oh good, I don't have Lyme disease," Abbate adds.
But her symptoms, including a bulls-eye rash, flu-like symptoms, vertigo and muscle and joint pain persisted for years.
So she says she did some research on the Health Canada website -- and found the lab-test she took -- called the "Elisa Test" produced a large number of false-negatives.
According to an article published by Health Canada, "the currently available Lyme disease test kits have been found to have limitations of sensitivity and specificity, particularly when used on patients with acute infection."
"If the test is conducted in the earlier phases, it is more likely to come back negative," says Dr. Wajid Ahmed of the Windsor-Essex County Health Unit.
The article says results improve the longer the bacteria is in the body.
This led Abbate to seek testing outside of Canada.
She says she found a doctor who performed a "Western Blot Test" in Michigan.
Four-and-a-half years later, she had her diagnosis.
"At first, I was elated, finally I knew what was wrong. Then I was kind of shocked, to find out that I couldn't get treatment here because the testing I had, done in California, it was not accepted here," says Abbate.
It was not accepted or covered by OHIP.
"The private labs in the states and in other parts, they're using techniques which are not validated and i think that's where most of the controversies lie," says Dr. Ahmed.
Dr. Ahmed says Canada uses a two-tier testing system.
If the Elisa test comes back negative, a doctor will rule out Lyme disease.
Dr. Ahmed says only if it comes back positive will doctors apply the second, Western Blot test.
It's a practice endorsed by the Centre for Disease Control.
Abbate says there are about 40 members in the Sun County Lyme Awareness Support Group.
She says all have been diagnosed with Lyme disease.
But only three people received their diagnosis in Ontario.
She says science used by Health Canada needs to catch up with the growing deer-tick population.
"If you happen to get it you should have to be able to depend on testing and treatment options being available right here, instead of having to travel outside of canada," says Abbate.
Less than 1000 Canadians are diagnosed annually with Lyme disease, including only 5 people in Essex County over the last four years.