Public awareness is the key to identifying Lyme disease, says victim

Oakville Beaver
When 39-year-old Rob Manten was finally diagnosed with Lyme disease in June, the Waterdown resident felt like he had won two battles.

Not only had the debilitating disease that had ravaged his body for more than 10 months been identified, but he was now in a position to promote more public awareness about the disease and hopefully convince the Canadian government and some members of the medical community that the presence of Lyme disease in this country shouldn't be downplayed.

The disease is caused by a bacteria called Borrelia burgdorferi, which is left in the human body by deer ticks, often no larger than a poppy seed, that clamp onto the skin and feed on their victim's blood while allowing the bacterium to enter the body. According to the website for the Canadian Centre for Occupational Health & Safety (CCOHS), these bacteria most often cause a mild illness, sometimes accompanied by a peculiar skin rash. But, in some cases, the bacteria can spread to the joints, heart, and brain, causing serious problems. If left untreated, it can cause disability.

Last July, the Mantens were camping near Brantford when they noticed "a whole slew of ticks" around their campsite. Manten was bitten by one and his wife, Janet, recalls pulling ticks off their three children as well.

They weren't concerned about the ticks. After all, they were more than 40 kilometres away from the north shore of Lake Erie and Long Point, which is "the only clearly defined risk area in Canada" for ticks carrying Lyme disease, according to the CCOHS website.

"That's the first misconception we had," Janet said, adding that she and her husband now believe that ticks carrying the disease "could be anywhere," not just along the north shore of Lake Erie. The couple feel that people should be forewarned and they're disappointed by what they see as a cavalier approach to the problem by the Canadian government and much of the medical community.

"It seems they have their heads in the sand where this disease is concerned," Manten lamented.

While Manten acknowledges that he cannot categorically prove that the tick bite he received at the Brantford area park caused his Lyme disease because symptoms can lie dormant for years, he does know that something dramatic happened to his health shortly after being bit by the tick.

Within two months, he began experiencing flu-like symptoms, including fever and nausea. He had migraine headaches every day for two months and he experienced a host of other symptoms, including dizziness, difficulty concentrating, constant ringing in his ears and a pressure sensation in his forehead. He still struggles with fatigue, despite being two months into his antibiotic treatments.

By late October, he was no longer able to function at his job as an environmental engineer for an Oakville/ Mississauga area consulting firm. It was eight months and 13 doctors later before he had a correct diagnosis.

In Ontario, he was tested three times over six months for Lyme disease. All came back negative; the test most widely accepted in Canadian medical circles (the ELISA test) is unreliable, Manten later learned from a local psychologist who he was referred to after doctors in Ontario failed to get to the root of his health problems.

Manten was referred to the psychologist for treatment of depression. After learning about his symptoms, the psychologist promptly told him not to show up for an appointment because, he said, "I think you have Lyme disease."

The Mantens traveled to Long Island, New York, where doctors see many more cases of Lyme disease. There are hundreds of thousands of Lyme disease cases in the United States, most of them near the Canadian border.

Last year, more than 21,000 cases of the disease were reported in the United States, but the Centres for Disease Control believe the number is actually 10 times greater. Health Canada's numbers suggest that Canadians have little to worry about. There have been 310 reported cases of Lyme disease in Canada since 1994, mainly in Ontario and B.C., and more than half of those are attributed to tick bites outside the country.

The U.S. has a better reporting system than Canada when it comes to determining the actual number of Lyme disease cases, Manten charged, adding that statistics are artificially low here because officials require both a positive result on the ELISA blood test, one of two available to check for the disease as well as evidence of a rash that looks like a red bull's eye (something which Manten didn't experience). Because the ELISA test is unreliable and just 50 per cent of Lyme disease victims exhibit the bull's eye rash, Manten suspects the Canadian numbers are greatly understated.

In Long Island in April, Manten saw two doctors, a neurologist and a general practitioner. After looking at various scans, the first doctor concluded Manten didn't have Lyme disease. The other doctor gave him a partial Western blot test, which showed a negative response.

Finally, after looking for information about the disease on the website for the Canadian Lyme Disease Foundation (www.canlyme.com), Manten was advised to see a Toronto doctor who specializes in internal medicine, infectious diseases and medical microbiology. A blood sample was taken in early May and sent to a lab in California for a full Western blot test. The IgM (or early antibody response) to the test came back positive. Ten months after having been bitten by a tick, Manten finally had a correct diagnosis.

"The most frustrating part of all this was, all those months, I had no idea what was wrong and I was gradually getting sicker and sicker," he said. Still, he feels fortunate that it took less than a year for his diagnosis; he's heard of cases that went undiagnosed for 10 to 20 years.

A big part of the problem is that Lyme disease mimics the conditions of many other diseases. Its victims are commonly misdiagnosed with arthritis, fibromyalgia, chronic fatigue syndrome, lupus and multiple sclerosis, Manten said.

Manten is now on the road to recovery. After two months of antibiotic treatment, some of his symptoms have abated. His doctor expects it will take eight months before Manten feels like himself again.

Manten credits his employer, the Hatch consulting firm, for being "incredibly supportive."

But as he fights to extend his short-term leave to long term-disability, his main goal is to get the word out about the dangers of Lyme disease. "It can be encountered anywhere in Canada," he warns. "It's not an epidemic, but it's present."