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Lyme sufferers struggle for diagnosis, treatment

It started as an odd twitch in her bicep, then a tingling numbness in her face. Soon, Kitsilano mother Susan Schirk’s toes began cramping up so severely, she couldn’t unclench them. Then the cramping spread to her arms.
Lyme disease
Susan Schirk, who suffers from Lyme Disease, self-administers an intravenous drip three-to-four times a week. It's a one-hour process, which Susan passes with her iPad.

It started as an odd twitch in her bicep, then a tingling numbness in her face. Soon, Kitsilano mother Susan Schirk’s toes began cramping up so severely, she couldn’t unclench them. Then the cramping spread to her arms.

“I couldn’t hold up a blowdryer,” she says. “I would wash the dishes and I would get a cascading numbness and buzzing all down my body.”

Despite the seriousness of her condition, it would take Schirk more than two years and a visit to specialist in the U.S. to get a correct diagnosis for her condition: Lyme disease.

In the meantime, the once successful real estate agent had to walk away from her business, and could no longer pick up her child.

Lyme disease is caused by an infection of the Borrelia bacteria, often spread through tick bites. 

In its early stages, symptoms include fatigue, fever, and a rash, and can usually be cleared up with a round of antibiotics.

However, if an infection initially manages to go unnoticed, symptoms can become more serious, including nerve pain, motor impairment, arthritis, and cognitive issues like short-term memory loss. It also becomes harder to treat, and more costly.

Schirk has been on IV and antibiotic cocktail for two years. So far, her treatment has cost her family more than $20,000 for antibiotics, private medical consultations, travel expenses, supplements, and probiotics to help build up her immune system.

“The only support I received from our medical system was the offer of sleeping pills and pain killers,” she says.

Had Schirk been able to get a correct diagnosis initially, she believes her symptoms would not have progressed as far as they have.

Jim Wilson, head of the Canadian Lyme Disease Foundation (CanLyme) says Schirk’s case is a story he’s all too familiar with. As a result of out-of-date testing procedures in BC, he believes Lyme disease is far more prevalent in this province than the medical community and is being mistaken for conditions with similar symptoms like multiple sclerosis, arthritis, and Parkinson’s.

In the U.S., more than 35,000 cases of Lyme disease are reported annually, according to the Centre of Disease Control, with the majority of cases located in New England and the Midwest. By comparison, BC had only 142 cases between 1997 and 2008 according to the BC Medical Journal.

“But there’s really no way of telling how many in BC have contracted Lyme disease, because the current testing is incapable of detecting the different varieties [of the virus],” said Wilson. “The current test hasn’t changed since 1994.”

He says that while Health Canada has advised that current Lyme disease tests are out of date, the provincial government has yet to update its testing procedures.

After initially testing negative for Lyme disease here in BC, Schirk eventually flew to San Francisco where a specialist diagnosed her as having the disease.

But getting a diagnosis is only part of the battle for those with chronic Lyme disease. Medical opinion on the treatment of the disease is mixed. The Infectious Diseases Society of America considers chronic Lyme to be a rare condition with basis for long-term antibiotic treatment. The International Lyme and Associated Diseases Society, meanwhile, supports long-term antibiotic treatment, a position backed up by CanLyme.

Wilson says that in BC, doctors can be reprimanded for prescribing long-term antibiotic therapy, forcing many patients to seek treatment in the U.S.

For Schirk, the therapy has helped her get her life back, she believes. Since starting her antibiotic treatment, her symptoms have lessened and she’s even returned to work part-time.

NDP MLA Judy Darcy, the opposition health critic, called on the provincial government to do more for sufferers of Lyme disease in the provincial legislature on Oct. 20.

“I have heard from countless people across BC, all of them sharing personal stories of the suffering they have experienced. Some are unable to care for themselves. Others have lost their jobs, many have reached their personal breaking point. Most have been bounced around from one health professional to another without getting the diagnosis or treatment they need to heal.

Why? Because medical opinion is divided on how to diagnose, how to treat, and on the prevalence of Lyme disease in BC. And doctors who treat Lyme disease aggressively with antibiotics do so at serious professional risk.”

Darcy cited the Provincial Health Services Authority’s own 2010 confidential report on Lyme disease that recognized the disease is on the rise in BC and pointed out shortcomings in current testing and treatment.

The report also stated that doctors in BC should be able to prescribe the therapy they deem fit for Lyme disease patients - unless that therapy creates a greater risk - and should not be reprimanded for doing so.

“Yet patients are still being forced to leave BC or pay very high costs if they are able to receive treatment at all,” Darcy said. “People with Lyme disease have a right to be treated by a physician here in BC, and physicians should not suffer the consequences for providing that care.”

A Lyme disease awareness forum is being held Nov. 13 at the Creekside Community Centrefrom 7pm and 9pm. Speakers include Gwen Barlee (Policy director for the Wilderness Committee Vancouver and a Lyme disease advocate), Lyme disease specialist Dr. Liz Zubek (formerly with Chronic Complex Disease Program in Vancouver), and naturopath Dr. Boutet.