Why are crippling Lyme disease cases being misdiagnosed?
Published Saturday, November 14, 2009 6:56PM EST
David Leggett used to love the outdoors. He was a healthy, active, family man who enjoyed camping trips with his wife and two daughters. His job as a high school principal came with a long summer vacation -- the perfect time to enjoy Canada's vast stretches of wilderness.
That all changed in July 2004, after camping in a provincial park near Sudbury, Ont. "We were out hiking and then one day I couldn't hike anymore and my knee ballooned up. I felt really, really strange. I had no energy," Leggett recalled.
By October, Leggett was too ill to work. After doing some research on his own he suspected he might have Lyme disease -- but his doctors told him that was impossible because it was too rare in Ontario and it didn't exist where he had been camping. They were wrong.
These days Leggett spends his time lying in bed, unable to get up to eat or even bathe himself. Most of his Canadian doctors continue to insist he is not suffering from Lyme disease, even though a blood test from an American lab came back positive for Lyme.
The chameleon disease
Lyme disease is often called "the great imitator" because it presents like a variety of different diseases or neurological disorders. As a result, Lyme patients are commonly misdiagnosed with a number of other conditions, everything from multiple sclerosis and Parkinson's disease to autism and even schizophrenia.
Lyme disease is the most common tick-borne disease in the Northern Hemisphere. It's transmitted to humans by the bite of a tick infected with the bacterium Borrelia burgdorferi.
Early symptoms may include fever, headache, fatigue, muscle and joint pains as well as a characteristic 'bulls eye' rash. Generally, if the illness is treated early the infection and its symptoms can be eliminated by antibiotics. If left untreated, however, the bacteria can move through the bloodstream and more serious symptoms can develop, which can be disabling and increasingly difficult to treat.
Professor George Chaconas a University of Calgary researcher, has spent the last 10 years studying the Borrelia burgdorferi bacteria that causes Lyme disease. According to Chaconas, it's the bacteria's ability to change the proteins on its coat that makes it so elusive to the immune system.
"The organism is like a strange visitor from another planet," Chaconas told W5. "It's in a perpetual masquerade party and each time you start recognizing it, it puts on a new disguise and escapes your immune system," he said.
This may be one of the reasons why Canadian doctors often misdiagnose the disease, or simply don't test for it.
Jim Wilson, who founded the Canadian Lyme Disease Foundation after contracting the disease himself, insists Canadian doctors need to do a better job educating themselves. "The enemy here is ignorance, it's arrogance and it's the lack of impetus of our present system to get off its heiny and go do the research that we need to do," said Wilson.
He maintains that the medical establishment's ignorance about Lyme disease is forcing many Canadians to seek expensive treatment outside the country. "We know families in just about every province now who've lost their homes trying to get treatment," said Wilson.
In 2007, only 109 patients were officially diagnosed with Lyme disease in Canada. During that same year, there were nearly 13,000 confirmed Lyme cases in the American states bordering Canada.
"Ticks don't carry passports. They don't stop at the border, so to think that we don't have Lyme disease in Canada, I think is not realistic," Chaconas said.
Ontario has the highest number of reported cases in the country, with 411 documented cases since 2000, when the province first started tracking them.
In an interview with W5, Dr. David Williams, Associate Chief Medical Officer of Health for Ontario, acknowledges that his fellow physicians have been slow to realize that Lyme is a serious problem.
"Some were saying a few years back it doesn't exist in Canada, it's a Northeast State thing. Now we said it is in Ontario. We've been pushing our Canadian partners saying this is something in Canada we have to be aware of," said Williams.
For David Leggett, any greater awareness of the danger of Lyme disease comes too late. His disease has progressed so far, he worries it may no longer be curable. "I do want to get well. Do I think I'm going to get there? I don't know. To be honest, it doesn't appear that way," he said.