Although the Canadian Lyme Disease Foundation recently held successful rallies across Canada, it will have to keep the pressure on to force changes in diagnosis and treatment.
Unlike many non-profit groups, the foundation‘s Wall of Hope rallies were not focused on raising funds, but increasing awareness, said Mary Delisser, who offers support to those who call the foundation (www.canlyme.com).
“The disease is largely ignored here in Canada. It‘s under the radar; it‘s not even reportable. Canada shows very few cases per 100,000 compared to all the other countries. It‘s just ridiculous,” she said.
The first Wall of Hope rally, held in Ottawa on Sept. 14, 2007, focused on the problems of testing, diagnosis and treatment of Lyme disease in Canada.
The series of rallies on July 4 in Kamloops, Vancouver, Edmonton, Winnipeg and Toronto zeroed in on the testing.
“The test used in Canada is so flawed that it eliminates everybody from having Lyme because it is so insensitive,” said Delisser.
The U.S. test is far superior, “so almost all of us have had to pay to be tested in the U.S.,” she said, and provincial health programs don‘t
cover that cost.
Although foundation president and founder Jim Wilson lives in Westbank, supporters in Kelowna and Penticton drove to Kamloops for the rally there.
“We would have loved to have had rallies in Kelowna, in every city in Canada, but they are very, very difficult to organize. We‘re talking about sick people; most of them couldn‘t even go. Whoever was willing and able to organize a rally in their area, they did so and encompassed the wider area,” said Delisser.
The foundation is planning more walks, but she can‘t say at this point when or where.
The U.S. has an estimated 20,000 cases a year, while Canadian authorities estimate the number at between 30 and 100 a year.
“We know there are about 2,000 cases per year in Canada. The phone never stops ringing. Not all of them have Lyme, certainly, but a good percentage of them do. They show clear symptoms, such as the bulls-eye rash,” said Delisser.
Immediate treatment with antibiotics can kill the disease carried by birds, rodents, deer and ticks. A long list of symptoms can be found at
Dr. Ernie Murakami‘s website: www.drerniemurakami.com.
If not treated immediately, long-term treatment with antibiotics is required (average two years). Many Canadians get that in the U.S., with the cost ranging from $15,000 to $50,000.
According to Delisser, Murakami, who lives in Hope, was virtually the only doctor who recognized the disease and treated it until he retired earlier in the year.
Delisser got the disease in 2002 while camping on Vancouver Island.
“Ten months later, when I actually hit the floor with the symptoms, I was in a wheelchair. I discovered Lyme disease on the Internet. It showed the bulls-eye rash that I had on my leg the summer before.”
She received treatment from Murakami, “the Lyme doctor of Canada,” for 15 months.
The disease is often misdiagnosed as multiple sclerosis, amyotrophic lateral sclerosis, Crohn‘s disease, lupus or fibromyalgia.
Wilson is on holidays in Mexico and was unavailable for comment.
A Westbank man tested positive in August 2005 after he was bitten by a rare ixodes tick, not the common Rocky Mountain tick found in the Okanagan.
A chipmunk trapped in the Bear Creek area and a mouse caught near Vaseux Lake that year also tested positive. Top of Page
