Saint John woman broke from costly Lyme disease treatment

A Saint John woman maxed out her credit cards and had to sell her home after resorting to costly U.S. medical care for long term treatment of Lyme disease.

Nancy Searle struggled for years to be diagnosed and treated for the disease.

She says she now requires a cocktail of antibiotics to manage her pain, but Canada's healthcare system doesn't recognize the condition known as chronic Lyme, and advises against long term antibiotic use.

I had to stop treatments in March, but I maxed out all my resources. I ran out of money … I now live with my daughter and I just work enough to try to keep the credit card people away from me," Searle said this week in an interview with Information Morning Saint John.

"I'm trying to find somebody to sign off on my prescriptions so I can have them back again, but so far no luck."

Diagnosed with fibromyalgia 

Searle suffered from hip and back pain for about a year before she was prescribed medication for fibromyalgia in 2011.

After three years of continued pain, she sought out a naturopath in Nova Scotia who ordered tests for Lyme disease. A blood sample sent to California turned up a positive result, she said.

At the time, Searle found no medical support in New Brunswick, so she turned to a doctor in Maine to have her illness treated.

"Right off the bat we started out on a plan of antibiotics but it was about 10 months before we got a plan that worked for me," she said.

"So that was 10 months of travel back and forth to see the doctor. Until then I never realized what it costs to see a doctor. When you start paying for it yourself, you do."

Searle had to pay about $1,700 US out of pocket to fill her monthly prescriptions, in addition to her travel costs. She says her own doctor wouldn't sign off on the prescriptions.

"As she put it, if she started giving me large doses of antibiotics her boss would want to know why. And she couldn't say [chronic] Lyme disease because no one here is trained to treat it," said Searle.

"Every day is a challenge for me, where every second I am in pain. I can't give up trying to get help so that I can have a better way of life."

'Emerging trend'

New Brunswick's acting chief medical officer Jennifer Russell says the province is seeing an average of four cases of Lyme disease each year.

She says catching the infection early gives patients the best chance for a proper diagnosis and treatment — about a four week course of antibiotics.

"Things like the symptoms people associate with chronic Lyme disease, that type of treatment is a clinical issue and generally lies outside our mandate in public health," said Russell.

"We're concerned with the education and awareness of healthcare providers and prevention … it's an emerging issue, for sure … It's on our radar, we're taking it seriously and we want to educate the public on how to prevent getting bitten by a tick."

Last month, the Public Health Agency of Canada held a conference on Lyme disease, which covered enhanced surveillance, treatment guidelines and education and awareness for clinicians on what to look for and how to treat it.

All-party round table

New Brunswick Southwest MP Karen Ludwig chaired a round table on Lyme disease on Monday, that she hopes will lead to a national database of confirmed cases across the country and guidelines for medical professionals.

Ludwig said she couldn't ignore the problem after going door–to–door and talking with voters.

In 2015, there were more than 700 cases of Lyme disease reported to the Public Health Agency of Canada. In 2009, there were 128 cases.

Lyme disease is an infection caused by Borrelia burgdorferi bacteria. In Canada, it's transmitted by two species of ticks that suck on the blood of humans and other animals. Ticks look like a small, flat watermelon seed.

The eight-legged critters can't fly or jump. They lurk on grass or shrubs and climb onto a passing host.

In most cases, the tick must be attached for 36 to 48 hours or more before Lyme disease bacteria can be transmitted, the U.S. Centers for Disease Control and Prevention says.