Disease underreported in Canada, expert says

Published on September 14, 2011

Ashley Thompson

Lyme disease is difficult to detect, dangerous if left untreated and commonly misdiagnosed.

It’s also striking close to home.

Heather Carter knew little about Lyme disease until she realized she was experiencing the same symptoms as a friend being treated for the bacterial infection that is transmitted to humans through blacklegged tick bites.

Both women, middle-aged Ardoise residents, have been battling extreme fatigue, dizziness, confusion, aching muscles and joints, and a variety of flu-like symptoms this summer.

“It’s not day to day; it’s hour to hour,” said Carter, who no longer drives because she finds it is too difficult to stay alert for an extended period of time.

Carter began taking antibiotics to treat the infection July 28. She did not receive the bulls-eye rash that may appear once someone has been bitten by an infected tick, which makes it easier for doctors to diagnose the disease that has such insidious symptoms it often gets misdiagnosed and left untreated for far too long.

“It’s really quite frightening what can happen if it gets to the chronic stage,” Carter said.

“There are people out there that may have it and not realize it.”

Carter says it is important for people to realize infected ticks are in Nova Scotia. She personally knows of four people in Hants County being treated for Lyme disease.

But, as of Aug. 31, Capital Health Authority spokesman John Gillis said there have been no new cases of Lyme disease reported in Hants County in 2010 or 2011.

Doctor finds statistics misleading

A British Columbia-based Lyme expert, Dr. Ernie Murakami, says relying on reported cases of Lyme disease as an indication of the prevalence of the infection in a Canadian province, or county, can be misleading.

Murakami says there are noteworthy discrepancies between the low quantity of Lyme disease cases reported in Canadian provinces, and the significantly higher number of cases recorded in neighbouring American states.

According to the Communicable Disease Prevention and Control section of the Government of Nova Scotia’s website, 67 cases of Lyme disease have been reported in Nova Scotia since 2002.

Statistics released by the Maine Center for Disease Control and Prevention reveal that Maine, the closest American state to Nova Scotia, had 734 confirmed or probable cases of Lyme disease reported in 2010 alone.

Murakami said a comparison of the number of reported cases in Canadian provinces and bordering American states should act as a wake-up call for many Canadian doctors.

“How can you compare single figures versus thousands across the border? I don’t see how the border could make much of a difference,” he said during a phone interview Sept. 7.

Ticks, which are typically found in wooded areas and long grass, have the ability to travel long distances by latching on to larger species, such as birds, deer or mice.

In Canada, Murakami says, patients must test positive for Lyme disease according to an ELISA test — a detection method that he describes as inadequate — before a case is reported to a public health agency.

“We, as Canadian doctors, are doing a great injustice perpetuating a lie that this ELISA test is the golden standard for the diagnosis of Lyme disease.”

Difficult to diagnose

Murakami says the ELISA test periodically produces false negatives, leading medical professionals to misdiagnose patients with Lyme disease and, in doing so, inadvertently prolonging a patient’s suffering.

“The Western blot test is more specific for Lyme disease, but unless the ELISA is positive, it’s not done in Canada,” explained Murakami, noting that he has sent samples to labs in the United States for advanced testing, only to realize the ELISA tests interpreted in Canada produced inaccurate results.

“We, as Canadian doctors, are doing a great injustice perpetuating a lie that this ELISA test is the golden standard for the diagnosis of Lyme disease.”- Dr. Ernie Murakami

“It’s so frustrating for me to see some people sort of slipping through the cracks as far as the diagnosis of Lyme goes, and this is why I’m dedicating my whole life just to try and educate,” he said.

Murakami, a retired family physician who was awarded Clinical Associate Professor Emeritus status at the University of British Columbia, travels throughout the country lecturing at group functions designed to inform the general public, and any health professionals who will listen.

In his presentations, Murakami discusses the importance of treating Lyme disease on a clinical basis upon identifying the symptoms, rather than waiting for the results of an ELISA test to return from the National Microbiology Lab (NML) in Winnipeg.

A directive released by the Public Health Agency of Canada Feb. 25 stated that 24 false-negative results had been returned from the NML, out of about 1,557 samples tested. The misdiagnosed patients were spread throughout five provinces.

“When someone shows symptoms of Lyme disease and might have been exposed to the ticks that carry it, guidelines recommend that physicians treat the illness, even if it has not been confirmed with laboratory testing,” the release stated.

“All laboratory tests have a margin of error, which is why physicians are encouraged to follow the recommended treatment guidelines and treat patients they suspect may have Lyme disease with antibiotics, even without the results of lab tests.”

Living life Lyme literate

Murakami says general practitioners must treat severe cases of Lyme disease with high levels of antibiotics for longer periods of time than the standard two to four weeks that is recommended for infections identified in the early stages.

“We, as professionals, have to get together… and talk about Lyme disease, and learn,” he said.

“It’s really a struggle to try to get people on board.”

Murakami, founder of the Dr. E. Murakami Centre for Lyme, says he has a better understanding of Lyme disease than most people, but he is often hastily dismissed by medical professionals that are hesitant to change how they diagnose and treat it.

“I’ve treated over 3,000 directly, and about 4,000 indirectly through other doctors and specialists,” he said, adding that some physicians still consult him for advice.

If left untreated, Murakami says, Lyme disease can attack every organ in a person’s body. It is commonly misdiagnosed as heart or mood disorders, arthritis, multiple sclerosis, fibromyalgia, Irritable Bowel Syndrome, ALS or lupus.

Murakami says he has cured people who have been left disabled for years by the debilitating disease, and restored their bodies to good health.

“I have so many happy people telling me what I’ve done for them,” he said.

Murakami will be visiting the Basinview Drive Community School in Bedford at 7 p.m., Sept. 19, to speak about Lyme disease prevention, the proper way to remove a tick, diagnosis methods and treatment options.

The visit to Nova Scotia, Murakami says, is part of his endeavour to promote Lyme literacy from coast to coast.

“I won’t stop.”

To learn more, visit Murakami’s website at www.murakamicentreforlyme.org, or the Canadian Lyme Disease Foundation’s website at www.canlyme.com.