Ottawa Lyme disease sufferers say they aren’t getting the help they need

But medical establishment says controversial antibiotic treatment endangers patients, others

By Joanne Laucius, OTTAWA CITIZEN May 10, 2013

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LYME DISEASE: PAINT THE TOWN GREEN

Among the events scheduled this week to raise awareness of Lyme disease:

On Saturday, the heritage portion of Ottawa City Hall will be lit up in green from dusk to dawn and volunteers will be handing out information and “tick keys,” pocket gadgets used to remove ticks.

The CN Tower in Toronto will be lit up in green on Saturday. On May 17, a portion of Niagara Falls will also be illuminated in green.

Dr. Ernie Murakami, a B.C. physician and Lyme advocate, speaks in Ottawa on Monday at 7 p.m. at Saint John Lutheran Church, 270 Crichton St.


Erin Bidlake is one of about 50 people in the Ottawa area who believe they have chronic Lyme disease.

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OTTAWA — Photographer Heather King says she knows where she got Lyme disease. It was taking photos at the Bruce Pit in 2009, where she also picked up pieces of wood and bark for a future project and left them in her closet.

People who are bitten by a Lyme tick often develop a telltale bull’s-eye rash alarming enough to warrant a trip to the doctor. King, 39, didn’t get the rash, but in the weeks and months that followed, she developed mysterious and debilitating symptoms: chronic fatigue, swollen, aching joints, nausea, headaches, neck pain, heart palpitations and “air hunger.”

“It feels like your lungs are filling up with sand and there’s nothing you can do to breathe,” she says.

King felt so anxious that she was terrified to go to the grocery store or to check the mailbox. She says once in 2010 her hand was so swollen, it looked like a baseball glove. She hasn’t worked since.

Physicians and Ottawa Public Health officials take Lyme disease very seriously. People who find a tick attached to their body are urged to remove it carefully, put it in a baggie and bring it to public health for analysis.

Those who have the rash or test positive for the disease are prescribed a round of antibiotics. That usually does the job, although some studies have found that in a minority of cases, the symptoms linger for up to two years.

However, more than 50 people in the Ottawa area, like King, say they were not diagnosed in the early stages of the disease.

They say they are being treated for illnesses like multiple sclerosis and depression when they should be treated for Lyme — and they are forced to find their own treatments through alternative practitioners and “Lyme-literate” physicians in the U.S. who are willing to prescribe long-term antibiotics because the Canadian medical establishment is doing nothing to help.

Hope, B.C.-based Dr. Ernie Murakami, who will be in Ottawa Monday for a speaking engagement, says he was forced into retirement in 2008 for treating patients with long-term antibiotics.

“There is a tremendous fear factor in the medical community because of what happened to me,” says Murakami, who was the subject of a College of Physicians and Surgeons of B.C. investigation starting in 2005.

“A lot of medical doctors will work under the radar. But they are absolutely petrified.”

Treatments in the U.S. can cost well over $1,000 a month, but infectious diseases experts say long-term antibiotics endanger not just patients, but other people as well. The medical establishment is standing firm. Acute Lyme exists. Chronic Lyme does not.

Dr. Paul Auwaerter, a professor of infectious diseases at Johns Hopkins in Baltimore, calls chronic Lyme the same kind of dangerous anti-science as the anti-vaccine movement.

“There are some people who have persistent conditions. There is no disagreement. But it is a small number of people,” says Auwaerter, who is on the board of the Infectious Diseases Society of America, which represents about 9,000 specialists in the U.S. and Canada.

Auwaerter says people are being labelled with chronic Lyme and are put on a treatment path that can be life-threatening or even deadly. Patients on long-term antibiotics in the U.S. have died after developing a strain of antibiotic-resistant bacteria.

Others expose themselves to the risk of C. difficile colitis, which is caused when antibiotics kill “good” bacteria, allowing C. difficile to proliferate and cause burns in the colon, says Auwaerter.

On a societal level, doctors are concerned about antibiotic-resistant bacteria, which are becoming more common and difficult to treat. He says 14 other medical bodies in North America and Europe also subscribe to guidelines that deny long-term antibiotics.

What is the explanation for these mysterious symptoms? Auwaerter says there are many, including sleep disorders, Parkinson’s, multiple sclerosis, anxiety, depression and low testosterone in men.

“There are people who are looking for help. I understand that. But chronic Lyme is a false-paved road.”

At various times in the past two and a half years, Heather King has been diagnosed with anxiety and fibromyalgia. She saw an infectious diseases specialist and a rheumatologist. After she tested negative for Lyme in Canada, King went to the U.S.

Last September, armed with her test results and rebuffed by her doctor in Ottawa, she went to see a “Lyme-literate” doctor in New York who put her on a course of antibiotics that could last as long as three years.

King estimates that she paid $7,000 for alternative treatments before her diagnosis, and since then has spent $1,000 a month on supplements and antibiotics.

“There is a denial that chronic Lyme exists,” says Erin Bidlake, who traces her Lyme to 1999. She was a 20-year-old camp counsellor in Morin Heights, Que. that summer and moved to St. Andrew’s, N.B., as a student in the fall. She had to return home after she woke up with intense back pain one morning in November.

The pain travelled to her knees, feet, arms and neck. It got so bad, she had a hard time brushing her teeth. She made the rounds of medical specialists for years. She was prescribed Prozac because the mysterious illness was believed to be a manifestation of depression.

“If you go to a doctor with acute Lyme disease, you’ll get treated. They don’t seem to have an answer for missed Lyme disease,” says Bidlake, who has taken antibiotics for 18 months and says she’s about 90 per cent better.

Ottawa environmental physician Dr. Jennifer Armstrong considers Lyme when treating a patient who presents with chronic fatigue. But she also looks at other factors, including diet and exposure to moulds and pollen.

She sometimes uses tests from labs in the U.S. and Germany because she believes doctors in Ontario don’t have the tools they need to diagnose.

The Lyme debate is very polarized, says Armstrong. She knows physicians who are afraid to talk about the possibility of chronic Lyme with patients for fear of reprisals from medical bodies.

“You have to ask yourself: ‘What is the politics here?’ ” she says.

“We all have to work together and see what we can do to make these people better.”

The Lyme advocacy movement is now more than 20 years old in the U.S. and has moved into Canada.

Last June, Green Party Leader Elizabeth May introduced a private-member’s bill urging a national Lyme disease strategy. Warming climate means more than 80 per cent of the population of Eastern and Central Canada will be living in areas at risk of Lyme disease by 2020, she says.

May got involved after she met a neighbour in Nova Scotia with a disabling illness in 2005. When she moved to B.C. four years later, she met more people who were depressed, frustrated and desperate to get treatment.

“This office has heard from hundreds of people with Lyme disease,” she says. “It is vastly underestimated. Once I tabled my bill, I had people come up to me on the street.”

Denying the existence of continued infection abandons sick people with a treatable illness, she says.

“I’m an MP, not a doctor. I just want to shine a light on this.”

In the U.S., eight states have enacted legislation to protect “Lyme-literate” physicians from investigation by medical bodies and forcing insurance companies to pay for treatment.

That’s about politics, not medicine, says Auwaerter.

“Go to a Lyme-literate doctor and you will be told you have Lyme.”

And what about going into the woods? Auwaerter, who runs a Lyme clinic in Baltimore, loves camping.

“I don’t live in fear. And I treat a lot of boy scouts.”

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