Waterdown resident Rob Manten, a Lyme disease patient and founding member of the Lyme Action Group, was part of the eight-member delegation made up of doctors, lawyers, patients and the president of the Canadian Lyme disease Foundation, Jim Wilson. And while Manten couldn’t predict the outcome of the meeting with Health Minister David Caplan’s policy advisor, he was hopeful that something will be done to improve the reliability of testing for the disease.

Caused by a bite from a bacteria-infected deer tick, Lyme disease is known as “the great imitator” because it manifests as symptoms of virtually all known neurological, musculoskeletal, arthritic, gastro-intestinal, cardiac, psychiatric, and autoimmune disorders including MS, ALS, Alzheimer’s, Parkinson’s, arthritis, fibromyalgia and autism.

Maintaining that “it’s the flawed testing that is the root of the whole problem” in detecting and treating the disease in Canada, Manten said the Canadian test for Lyme often produces false negatives – as it did in his case. If detected early, the disease can be treated with antibiotics. If left undiagnosed and untreated, however, it can become chronic and difficult to treat.

Manten hopes that the meeting with the ministry official will cover several areas of concern including accessibility to better testing, additional training for physicians and raising public awareness of the disease.

Also slated for discussion is the possibility that Canada’s blood supply could be compromised because Canada is one of the few western nations that does not currently screen its supply for Lyme.

These and other concerns of the Lyme Action Group were relayed in January when a package of information was sent to all Ontario MPPs, the Minister of Health, Attorney-General and Premier Dalton McGuinty.

Manten, who contracted Lyme disease five years ago but wasn’t diagnosed until 10 months later, said he donated blood during the interim and feels uneasy that the nation’s blood supply isn’t screened for the disease.

Like many other Lyme patients, he suspects that the number of reported Lyme disease cases in Canada is artificially low.

With Canada sharing its border with many areas in the United States that are clearly defined as risk areas for the tick-borne disease, he’s convinced that Canadian statistics are skewed.

“Health Canada would have us believe we have 50 cases a year,” he said, adding that’s difficult to swallow when statistics from the CDC (Centre for Disease Control) show that about 20,000 cases of the disease are reported annually in the United States. It’s believed that flawed testing and underreporting means that those figures don’t accurately reflect the actual number of cases which are likely 10 times higher, Manten said.

Additional information about Lyme disease and the issues surrounding its treatment and diagnosis can be found on a variety of websites including www.lymeactiongroup.blogspot.com www.canlyme.com www.lymeontario.org and www.ilads.org