***Compassionate Lyme article from our Ottawa paper***

Discussion in 'Fibromyalgia Main Forum' started by Jeanne-in-Canada, Sep 13, 2005.

  1. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Well thank goodness Canada seems to be waking up at least a bit about Lyme. You guys will love this, it talks about misdiagnoses of FM/CFS/MS too.

    This is what I got copied before the power went out (again) today:



    For sufferers, much of the problem has been medical ignorance. Maria Kubacki reports.

    Maria Kubacki
    The Ottawa Citizen

    Saturday, September 10, 2005

    Joan McComas was first diagnosed with multiple sclerosis, then a rare and fatal degenerative disease. For her, knowing she has Lyme disease is good news.

    Laurie Fraser knows exactly where she was when she got bitten.

    It was in the Mud Lake Conservation Area near Britannia Beach.

    She remembers because she walked there only once, in the fall of 2003, while on a break from painting her new house.

    Something bit her on the neck and it hurt. A few days later, she got a rash with a white spot in the middle. Ms. Fraser suffers from allergies and often has rashes, so she thought nothing of it, assuming she was having a reaction to the paint.

    But about two weeks after the rash appeared, she developed flu-like symptoms and back pain. "I could barely get out of bed," she says. A month later she went to the hospital seeking treatment for the pain.

    Over the course of the next 15 months, the 43-year-old ESL teacher endured a bewildering array of symptoms -- back pain, chest pain, headaches, nausea, swollen glands, night sweats, dizziness, extreme fatigue, tingling in various parts of the body, a sense of confusion, heightened sensitivity to noise and light and even partial facial paralysis, or Bell's Palsy.

    She saw specialist after specialist, each with their own theory. She spent thousands of dollars on nutritional supplements and alternative health remedies.

    Finally, she found an Ottawa doctor specializing in environmental medicine who diagnosed her with Lyme disease, a tick-borne illness caused by the spirochete Borrelia burgdorferi and known for its varied, often non-specific symptoms, as well as its ability to mimic other conditions.

    The disease was first recorded in 1977 in Lyme, Connecticut, where unusually high numbers of children were being diagnosed with juvenile arthritis.

    Ms. Fraser, who has travelled to India and Thailand, and lived in Nepal and Turkey, says she's been exposed to some nasty bacteria, so it's ironic that she got sick so close to home.

    "Here I am in safe little Ottawa, and here's the meanest bacteria that I've ever come across."

    Looking back, Ms. Fraser says she's had a typical case of Lyme, starting with the bite and telltale rash -- in her case, not a perfect bull's eye but similar enough to indicate the classic early sign of infection. Yet the local mainstream medical community was not open to the possibility that she had Lyme, because the perception is that we don't have Lyme here, she says.

    According to research published in the Canadian Medical Association Journal, blacklegged ticks, also known as deer ticks (Ixodes scapularis) in Ottawa have tested positive for the Lyme disease spirochete.

    But the disease is not considered to be endemic in Ottawa -- that is, there is no known established population of Lyme disease-carrying ticks.

    Dr. Gary Garber, head of the infectious diseases division at the Ottawa Hospital, says that while he and his colleagues have treated people for Lyme disease, none of the cases they've seen were contracted in the Ottawa area. He was not aware that Lyme disease-carrying ticks have been found here.

    In his opinion, patients who have pain, fatigue and other non-specific symptoms but who haven't travelled to endemic areas in Canada or elsewhere, don't have the characteristic rash and don't test positive for antibodies on Canadian tests, don't have Lyme disease, but something else.

    Ms. Fraser was recently told she has multiple sclerosis, but she rejects the diagnosis because an American test showed that she has Lyme disease -- which she believes is the true cause of her health problems.

    She has been taking antibiotics since January and says the Lyme treatment is working. Most of her most troubling symptoms have lessened or disappeared and, after two years of not working, she's returning to teaching this fall. "I am dramatically improved. I am a human being. I couldn't walk -- I was bedridden." If the medical community were better informed, she believes she could have been diagnosed and treated earlier.

    When detected early, Lyme disease is easily treated with as little as four weeks of antibiotics, but becomes harder to manage and may require longer courses of antibiotics (both oral and intravenous) the longer it lingers, because in later stages it can affect the joints, the heart, the brain and nervous system.

    There may be many people who are progressing into chronic Lyme disease because the illness is poorly understood and under-diagnosed in Canada, Ms. Fraser and others argue.

    According to the Public Health Agency of Canada, an average of about 30 cases have been reported annually between 1995 and 2004, 90 per cent of those in British Columbia and Ontario.

    But Canadian Lyme disease Foundation president Jim Wilson thinks the screening test currently used in Canada is inaccurate and the true incidence of Lyme is much higher than official numbers indicate.

    "My guess is it's in the tens of thousands," says Mr. Wilson, who says he gets 40,000 hits a day on his website and notes that almost all of the cases in the United States "are directly below our border."

    An average of 10,000 to 20,000 cases of Lyme disease are reported annually in the U.S. According to the CDC, the number of cases reported grew 70 per cent between 1992 and 1998.

    Distribution is clustered predominantly in eight northeastern states and two north-central states, with 92 per cent of all cases reported by those 10 states. Of those, New York -- which shares a border with Ontario -- accounted for nearly one-third of reported cases between 1992 and 1998.

    Dr. Harvey Artsob, director of zoonotic diseases for the Public Health Agency of Canada, says in the past, Lyme-infected black-legged ticks were concentrated in the southern parts of New York State, but "we're not saying the tick isn't moving."

    In fact, he acknowledges the tick -- carried by migratory birds and other hosts -- is moving north from southern New York, towards the Canadian border and "to places like Ottawa."

    The agency has no evidence to support Mr. Wilson's estimate of tens of thousands of undetected Canadian cases of Lyme disease, he says. However, he acknowledges that while the ELISA screening test is considered to be 90-per-cent accurate (the Western Blot, the second test in the two-step process, is thought to be as much as 98-per-cent accurate), the tests are not perfect and some cases will be missed. He admits it's theoretically possible that tests used in California or elsewhere are picking up cases that Canadian tests have missed. Lyme disease is a clinical diagnosis, in any case, he points out. Patients who have been diagnosed clinically by a physician should not be denied treatment because of negative test results -- which Dr. Artsob says should only be used as supportive evidence rather than absolute confirmation of the presence or absence of the disease.

  2. Jeanne-in-Canada

    Jeanne-in-Canada New Member

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