Canada - "CFIDS" but really Lyme...

Discussion in 'Lyme Disease Archives' started by victoria, Mar 4, 2010.

  1. victoria

    victoria New Member

    The politics of Lyme Disease
    Marcel Tetrault, Comox Valley Echo, Courtenay, British Columbia, Canada


    A brother and sister pair who showed great promise as students and athletes while attending
    Highland High School have been stopped in their tracks by a nasty disease.

    Katie and Russell Jasper were both able to successfully graduate, were even offered substantial university scholarships, but in the four to six years since they have pretty much
    been confined to their home.

    "I have two kids who have lost seven and five years of their lives at such a crucial stage,"
    said mom Susan Jasper. "If somebody had suggested to us six years ago that maybe you
    should look at Lyme, that might have saved Russell and Katie losing so many years of their

    ...the pair were very active kids, said Jasper, and enjoyed all sorts of sports, from hockey to
    soccer to weightlifting.

    But in 2003, at the age of 17, Russell fell ill with what was diagnosed at the time as severe

    "He had all the classic mono signs -- swollen spleen, exhaustion and he just didn't get better,"
    said Jasper. "The doctors kept saying it takes time.

    "After a year he was still pretty much bedridden."

    When the mono didn't clear up, Russell was diagnosed with chronic fatigue syndrome "and
    basically just told you have to live with it," said Jasper.

    He never improved so the family continued to consult with doctors, getting diagnoses that ranged from 'there's nothing wrong with him' to 'he needs to see a psychiatrist.'

    In 2005, when Katie hit the age of 17, she also fell ill.

    "She didn't have mono or anything that was immediately diagnosed," said Jasper. "She was
    just incredibly exhausted."

    The health of both of Jasper's children has continued to decline in the five years since, to
    such an extent that Russell was even having trouble walking and climbing the stairs.

    "His brain connection with some of his organs started to shut down," said Jasper. "They're
    both just physically shatteringly exhausted.

    "These are prime athletes and they both have such cognitive fatigue -- we call it brain fog --
    that even reading is difficult. Light and sound is like an assault on their brains so they've got
    blackout curtains in their rooms, they can't carry on a conversation for long.

    "It can be a really debilitating disease."

    In 2005, both Katie and Russell were tested for Lyme disease in a Canadian specialty lab. The
    results came back negative.

    As Jasper continued her research and discovered there were questions about the accuracy of
    the Canadian testing, they sent blood samples to an American lab.

    "They came back unequivocally positive," said Jasper. "There's a whole political issue there
    about why the Canadian testing isn't as good as the American."

    But the political and medical concerns do not end with Lyme disease testing.

    Even with the positive Lyme test in hand, Katie's family doctor told her he didn't believe Lyme
    disease existed and refused to treat her for it. They have been unable to find a doctor willing
    to treat the disease in the public system.

    ..."They can't know everything about every illness, I don't expect them to. But I do expect
    them to be open. I don't know why (Katie's doctor) wasn't overjoyed. He just didn't want to

    As such, they have had to go to a private medical clinic, where they pay about $10,000 per
    month for both children to be treated for Lyme disease. They have already spent about
    $20,000 on the various required tests.

    "We'll have to sell the house," said Jasper. "It's not right. Somehow Lyme has gotten caught
    up in this political and medical feud and the patients are falling through the cracks."

    But the good news is that since treatments have started both children have shown some
    improvement, with Russell "improving hugely," said Jasper.

    ..."If we didn't have access to private health, I'm convinced that Russell would die. I'm
    convinced that there are Lyme patients out there who are dying. It's not trivial."
    (rest of story at above urls)

    & More information about Katie and Russell's story can be found at
    More information about Lyme disease in B.C. can be found at the BC Centre for Disease Control website at

    So, Canada has some kind of border control for ticks? Worse ---

    "Claiming that it is a matter of “national security”, the Canadian government insists that
    Canadians have no right to records that measure the ability of our national medical laboratory
    to detect “the fastest growing animal to human disease in the northern hemisphere”.


  2. Nanie46

    Nanie46 Moderator

    Thanks for posting this.

    Unfortunately it is a common scenario.

    So very sad.