***Uncle, Health Canada LYME researcher, confirms the latest***

Discussion in 'Fibromyalgia Main Forum' started by Jeanne-in-Canada, Aug 12, 2005.

  1. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Ron's uncle and his late beloved Agony Aunt wife, who recently died, both worked for Health Cda until retirement in their mid 60's. They had much zoo-something research under their belts, the kind that studies diseases from animals transmittable to humans.

    Me and his uncle had a flyby talk about Lyme that was oh so illuminating. The highlights are that most of what the CDC denies about Lyme, Health Cda research confirms. the so called mavericks who believe it far more insidious, prevalent and mutagenic than mainstream medicos will admit seem to be right according to Hlth Cda research. He also believes most FM/CFS is caused by Lyme and that the sicker you get, the sicker you get w/ a higher load of steath infections which are very hard to detect.

    Those are the highlights. If I didn't at least start this, I'd put it off for too long. More when I can.



    Jeanne
    [This Message was Edited on 08/13/2005]
  2. Rosiebud

    Rosiebud New Member

    I'm beginning to wonder more and more about it -

    it is not hugely recognised in UK, someone told me that the ticks here arent as infectious as the ones in N. America -

    I'm wondering about that too now.

    Thanks for posting this.

    Rosie
  3. JenniferAnn539

    JenniferAnn539 New Member

    Jeanne,

    That's interesting information.

    Did Ron's uncle had any thoughts on treatment?
  4. neen85

    neen85 New Member

    I am glad that your Uncle was able to share this info with you. What an intelligent man he must be! Daneen
  5. lilbird

    lilbird New Member

    Its nice to hear some comformation when so many of us have been thinking this all along.

    It seems to me that the CDC in this country is so far behind its scary.

    Cathy
  6. matthewson

    matthewson New Member

    Only thing I can come up with is California dental assoc. and Canadian dental assoc.

    Just wondering who he worked for.

    Take care, Sally
  7. Bambi

    Bambi New Member

    you feel comfortable with the results. Just read another study that says it can't be a positive test unless you are actively infected and that all else is baloney. It said even then the test results are iffy and can be positive or negative and b totally wrong. I wouldn't know what to do.
  8. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Health CanaDA, Mathw. Would it have helped if I said Health Can., Cda is our more standard abbr., like US. My clonazepam was kicking in, not that it darn well put me to sleep or anything (one of those runs).

    Bambi,
    He confirmed that testing is trickier than standing on your head and licking your nose. You have to test at just the right time, when it's active, unless it mutates, then it won't show. Also hard to get antibody results for it, because it can exhaust the immune system to the point where you aren't even strong enough to react to it anymore. This happens to use w/ many things. Lyme has at least 3 known forms (mutations).

    *****
    Have to get all my thoughts together and remember everything. mOst everyting the independants are finding aobut it, is true. Most of it he saw under the scope and they proved it beyond doubt in lab. He's watched it proliferate before his eyes, and he says it's scary fast. Other stuff, they couldn't prove for sure, he suspects.


    jeanne
  9. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    want to keep this current, I'm exhausted tonight, doc appt., more hardware stores, picking out paint (heave), other shopping, some clothes (that part's good).

    If someone wants to pop a Lyme info article, something concise and not too techy, that sums it neatly, it would help to jog my memory as to what all we covered. Health Canada is Federal btw, so this is top of echelon research for Cda.


    Jeanne
  10. Jeanne-in-Canada

    Jeanne-in-Canada New Member

  11. sapphire

    sapphire New Member

    I've heard the same thing about the CDC. Glad your uncle shared this info with you.

    Take care,
    Sapphire
  12. tansy

    tansy New Member

    TICKING BOMB
    By SUSAN BOURETTE


    From Saturday's, August 20, 2005, Globe and Mail

    I lay on the emergency table, my left breast prepped for
    microsurgery. The resident peered at the underside of my bosom to
    examine the creature clamped in the middle of a dark and angry rash.
    The spider-like bug had been there for at least three days, having
    hitched a ride all the way from the grassy marshes of Prince Edward
    Island, where I had spent an afternoon in hip waders and bulrushes.

    "I've seen hundreds of ticks," the doctor assured me, his scalpel
    flashing under the hospital lights as he slashed into my breast to
    dislodge the bug. "I've picked them off myself up north.

    "It's not a tick," he continued, gluing my skin back together. "So
    don't worry."

    Three years later, I wasn't worried — I was panic-stricken. A
    strange illness had begun to assault me. My body felt like a powder
    keg. My skin was on fire. I was dizzy and had chest pains. My
    muscles twitched, and I had trouble keeping my balance when I
    walked.

    I shuffled from doctor to doctor, desperately trying to convince
    someone that the symptoms were not something a prescription for
    anxiety pills would heal. I was tested for HIV, syphilis, West Nile;
    nothing showed up. I was finally told I most likely had two
    autoimmune diseases — that I was in the early stages of both
    multiple sclerosis and lupus.

    My own layperson's investigation suggested a more plausible
    explanation: Lyme disease, tracing back to that bite three years
    before.

    What I could never have imagined as I set out to seek treatment was
    that I had stepped into the middle of one of medicine's most
    vengeful clashes — a war that not only pits patient against doctor,
    but also physician against physician. Patients' lives are in the
    balance as U.S. doctors lose their licences, casting a chill over
    the entire North American medical community.

    This war has claimed hundreds of thousands of Americans, and many
    more who go undiagnosed and untreated — not only victims whose lives
    are diminished, but also many who are in wheelchairs or bedridden.

    Many Canadian doctors and medical institutions are like
    conscientious objectors, not only retreating from the battle but
    also seemingly denying its existence. I encountered outright
    hostility to the possibility that I could have been infected by a
    tick bite in Canada.

    Lyme disease is an acknowledged epidemic in the United States. There
    are hundreds of thousands of Lyme patients, most of them in states
    next to the Canadian border. Last year, there were more than 21,000
    reported cases of Lyme disease in the United States, but the Centers
    for Disease Control believes that the number is actually 10 times
    greater. The number of Americans infected with Lyme disease over the
    past 30 years could be as high as three million.

    Daryl Hall of Hall & Oates recently cancelled a tour because he was
    too sick with Lyme disease to travel. He is just one among a star-
    studded cast of victims that also includes best-selling authors
    Rebecca Wells and Amy Tan. By the time she was diagnosed, several
    years after she first became ill, Ms. Tan was hallucinating. She has
    recently joined the groundswell of increasingly rancorous patient-
    advocate groups south of the border.

    The CDC's map shows areas of widespread Lyme infestation all along
    the eastern seaboard. But here in Canada, ticks, which are carried
    by songbirds and mice, apparently need a passport.

    "It's here in minute cases, confined to a relatively small number of
    areas," says Paul Sockett, who heads the Health Canada department
    that oversees diseases that pass between animals and humans. He
    argues that the endemic areas in the United States may be located in
    the middle of those states, so the ticks wouldn't make it as far as
    the Canadian border.

    But Ernie Murakami, in Hope, B.C., says his own caseload shows the
    official statistics are deeply flawed. Dr. Murakami, known among
    advocacy groups as one of a handful of "Lyme-literate" doctors here,
    says he has treated 1,000 Canadians for the disease, from Halifax to
    his home province. He has counselled another 1,000 patients and
    their doctors by telephone.

    Dr. Murakami says Canada is on the cusp of its own epidemic. "It's
    atrocious just how many cases are being missed by doctors," he
    says. "People's lives are being ruined. They're completely disabled
    when all they needed was antibiotics."

    Many people go years without a proper diagnosis. They lose their
    health, their jobs, their homes and sometimes friends and family who
    have trouble comprehending just how debilitating the disease can be.
    I was much luckier than most, because I began antibiotic treatment
    seven months after my first symptoms appeared. But even I was
    already too ill to work.

    In the doctors' defence, Lyme can be a difficult disease to
    diagnose. It is dubbed "the great imitator" because it mimics so
    many other diseases. People with Lyme disease are most commonly
    misdiagnosed with everything from arthritis to fibromyalgia, chronic
    fatigue syndrome, arthritis, multiple sclerosis, Lou Gehrig's
    disease, Parkinson's, Alzheimer's and bipolar disorder, to name a
    few.

    While German researchers first recognized the bacterium more than a
    century ago, it wasn't until a group of mothers in Lyme, Conn.,
    noticed that their children had all been suddenly diagnosed with
    juvenile arthritis that researchers began to search for the culprit.
    Lyme disease has now been reported in 50 U.S. states, but is also on
    the upswing in China, Europe, Japan, Australia and the former Soviet
    Union.

    The name of the bacterium is Borrelia burgdorferi. It's spread by
    deer ticks — often no bigger than a poppy seed — when they clamp on
    to the skin, feeding on the host's blood while allowing the
    bacterium to invade the body.

    The organism moves better through tissue than in blood, eventually
    embedding itself in the central nervous system, heart, brain, liver,
    spleen and joints, causing everything from mild pain to dizziness
    and paralysis. Often the first sign of Lyme disease is a bull's-eye
    rash. If recognized early enough, the disease is easily stopped in
    its tracks with a few weeks of low-dose antibiotics.

    Health Canada's numbers do make it seem that Canadians have little
    reason to worry. There have been 310 reported cases of Lyme disease
    in Canada since 1994, mainly in Ontario and B.C., and more than half
    reportedly caused by tick bites outside the country. But those
    numbers do not include the growing army of people like myself, who
    got their positive tests at specialized U.S. labs.

    And Dr. Sockett's view is not shared by everyone at the federal
    health agency. Robbin Lindsay, a Health Canada research scientist,
    says the organization is aware of several areas infested with Lyme-
    carrying ticks, including Lunenburg, N.S., and Rondeau Park,
    Presqu'ile, Point Pelee and Long Point in Ontario. Much of British
    Columbia, Dr. Lindsay says, is also rife with Lyme-infected ticks.
    In reality, she warns: "You can acquire a tick that is infected
    pretty much anywhere in Canada."

    Jim Wilson of Westbank, B.C., has witnessed the toll of Lyme disease
    within his own family and across the country. He was infected with
    the bacteria in Nova Scotia in the early 1990s, but it wasn't until
    his own daughter become ill a decade later in B.C. that he realized
    the extent of the problem in this country.

    He founded the charitable Canadian Lyme Disease Foundation two years
    ago to give a national voice to the disparate patient groups in
    various provinces. He says he receives dozens of e-mail messages a
    day from people trying to find help.

    "Let's just admit that we're missing something very big here," Mr.
    Wilson says, adding that his website gets more than 40,000 hits a
    day. "I just got a call from a reporter up in Gander, Nfld., wanting
    to know what's going on, because so many people believe they've got
    Lyme. It's everywhere but it's nowhere, according to Health Canada."

    Because of the lack of acknowledgment from the government, Lyme
    disease isn't even on the radar of most doctors, contributing to the
    misdiagnosis and debilitation of hundreds of Canadians, according to
    Mr. Wilson's lowest estimates.

    In my own case, by the time I ended up in the office of Jay
    Keystone, one of Canada's top infectious-disease doctors, I had
    already seen about 20 doctors. It was early spring and Dr. Keystone
    carefully reviewed my file before telling me that he didn't believe
    it was Lyme disease that was making me ill — too long between the
    bite and the manifestation of the disease, he said.

    He agreed that my symptoms were consistent with Lyme disease, and
    that it probably had been a tick bite I had three years ago. But my
    illness was more likely caused by stress, he explained. "Lyme
    disease is the most overdiagnosed disease in North America," he
    continued. "Even if you did test positive on a Lyme disease test, I
    would test you again and again and again." He said he didn't want to
    treat me for a disease I didn't have, and tests can produce false
    positives.

    I was stunned. What cancer or heart-disease patient, I thought to
    myself, has to prove their illness over and over and over again to
    get treatment? I left his office in tears, believing that no one in
    Canada was ever going to be willing to treat me. A few weeks later,
    however, I found a doctor — after obtaining a positive test from a
    California lab.

    "If someone's living in downtown Toronto, the chances of them having
    Lyme disease are incredibly low," Dr. Keystone explains now. "If we
    tested every patient who comes in with symptoms like you had, we
    would have huge numbers of people with false positive tests. .....
    I'm not a Lyme expert, but as far as we can tell, there's very
    little Lyme disease in Ontario."

    It may seem astounding that doctors who devote their lives to
    healing the sick would willingly turn patients away at the door. But
    the medical controversy over both the diagnosis and treatment of
    Lyme disease has created a difficult climate for patients and
    doctors alike.

    Over the past few years, more than 50 physicians in states such as
    New York, Connecticut and Michigan have faced lengthy investigations
    costing hundreds of thousands of dollars for administering long-term
    antibiotics to Lyme-disease patients. Many have been disciplined and
    some have lost their licences, creating a climate in which many
    doctors are reluctant to take on Lyme patients.

    The most acrimonious debate is over one question: How much
    antibiotic therapy is enough?

    On one side is a group of scientists and front-line physicians who
    believe that the symptoms of Lyme disease are diverse and defy easy
    diagnosis and treatment. If not caught in the initial phase, when
    both sides agree the disease is highly curable, patients will
    require months, if not years, of antibiotic therapy. If patients are
    still symptomatic after six weeks of antibiotics, these doctors
    believe they haven't been treated long enough.

    On the other side are the majority of infectious-disease researchers
    who develop drugs, receive research grants and often advise
    insurance companies. They believe that Lyme disease is easy to
    diagnose and cure. If the patient doesn't fully recover after three
    to six weeks of antibiotics, the patient is suffering from the
    aftershocks of the disease, they maintain, and further antibiotic
    therapy is pointless.

    They believe that lingering symptoms are caused by an autoimmune
    response triggered by the initial infection. And they warn that long-
    term antibiotic treatment can cause side effects such as allergies,
    colitis, gallstones and liver damage, and risks creating drug-
    resistant superbugs.

    Both sides have scores of studies supporting their opinions. As a
    result, many physicians are either ill informed or simply unwilling
    to treat patients, says Pat Smith, founder of the U.S. National Lyme
    Disease Association, based in New Jersey.

    "Lyme-disease patients are the lepers of the 21st century," Ms.
    Smith declares. She says she has referred dozens of Canadians who
    can't find treatment here to physicians in the United States. "No
    one wants to treat them. Sometimes it is just ignorance, and
    sometimes it's that doctors are pleading ignorance because it's just
    much simpler not to get involved."

    Maureen McShane has been on both sides of the divide. Dr. McShane
    lives in Montreal, but practises in Chazy, N.Y. She was bitten by a
    tick in the Laurentians two years ago. By the time she finally
    figured out for herself what she had, she had already seen scores of
    doctors in Montreal — from neurologists to a rheumatologist, who
    said her symptoms were caused by early-stage menopause.

    She admits that, before her own diagnosis, she didn't know much
    about the disease or the controversy. "Honestly, it's not that I was
    a bad doctor, but I didn't recognize the signs of Lyme disease
    myself," she says. "When I did hear about Lyme disease, I thought to
    myself, 'If only they'd get regular exercise and eat well, they'd
    get better.' I had no idea what these people were going through."

    It took two years of antibiotics before she began to feel well
    again.

    Dr. McShane says she understands that doctors are in a difficult
    position. "They know that if they prescribe long-term antibiotics,
    they run the risk of losing their reputations and their licences."

    Critics charge that the medical boards in many U.S. states have
    taken sides inappropriately in an argument that should be fought in
    journals and at medical conferences. It is, they claim, the
    insurance companies — which have huge stakes in the outcome of the
    battle because they don't want to pick up the tab for expensive long-
    term therapy — that are responsible for driving the Lyme-disease
    agenda.

    New York state assemblyman Joel Miller at first dismissed such
    complaints from his constituents. "But when I began to investigate
    it for myself, I found that most of the complaints against doctors
    were filed by insurance companies," he says. "It's a travesty that
    we've fought years to try to correct."

    Mr. Miller is one of a handful of legislators in his state
    responsible for helping recently to overhaul the laws, allowing
    physicians the freedom to treat Lyme disease in the manner they feel
    is most effective, without the threat of investigation by medical
    overseers.

    Although doctors in Canada have yet to face such scrutiny, some who
    are treating Lyme disease with long-term therapy have expressed
    concern that they, too, will be hauled before their medical boards.

    The other major concern is that testing is still so inaccurate. Even
    the U.S. Centers for Disease Control advises doctors to use the
    tests only to support a diagnosis based on patient symptoms. Health
    Canada says it has no idea how precise the tests are. Some doctors
    believe that the tests miss 40 to 60 per cent of true Lyme cases.

    One of them was Joan McComas, a 56-year-old tenured professor who
    lives in Ottawa. Like many Lyme patients, she does not recall being
    bitten or developing a rash, but she had been camping near Thunder
    Bay in the summer of 2000 before she came down with a flu she
    couldn't shake. Over six months, her list of maladies began to
    multiply — crushing fatigue, trouble with her balance, odd smells
    like mothballs and dishwater detergent. The doctors were mystified.
    Maybe it was a brain tumour.

    Two years later, she had lost control of her body, her limbs jerking
    violently every few seconds. Four years later, she was falling
    backward and sideways, and struggling to walk with two canes. "I
    could deal with that," Ms. McComas says. "What I couldn't deal with
    was that I was losing my ability to think. ..... I was having
    trouble finding the right words. I couldn't even recognize the faces
    of people I knew."

    Then came a new diagnosis, of an extremely rare, degenerative
    disease. The doctor told her that she had a few years to live, and
    she prepared herself. A few months later, her doctor told her that
    she wasn't going downhill fast enough. Her illness, he said, was all
    in her head.

    One spring weekend at an Ottawa drugstore, she described her
    symptoms to a pharmacist. "Did you consider the possibility of Lyme
    disease?" he asked. She had been tested. A negative test in Ontario
    didn't mean much, he told her. The tests produce both false
    positives and false negatives.

    My own doctor, infectious-disease specialist Hovsep Baghdadlian,
    says that of the 125 people he is currently treating for Lyme
    disease, only 10 per cent tested positive on Ontario tests. Like me,
    many doctors treating Lyme disease have turned to specialized labs
    in the U.S. But some Canadian doctors are loath to recognize foreign
    tests.

    When Ms. McComas received a positive test from a California lab, her
    infectious-diseases doctor in Ottawa refused to recognize her test
    results or treat her. Feeling she had no choice, she headed to New
    York, spending $12,000 on medical treatment. After a year of both
    oral and IV antibiotics, she says she's more than 90 per cent
    better.

    Should doctors prescribe antibiotics when they aren't 100 per cent
    certain that the patient has Lyme disease? Jim Wilson, for one, is
    unequivocal: The devastating consequences of physical, cognitive and
    functional disability associated with Lyme disease far outweigh the
    risks of antibiotic therapy.

    For its part, Health Canada says it is working hard on Lyme disease.
    It is conducting annual surveys to identify endemic areas, and has
    recently committed $800,000 in research funds to the disease. The
    agency's Paul Sockett says there is a proposal on the table to meet
    with the provinces this year to discuss Lyme disease.

    But Mr. Wilson says it's not enough: "We are years behind in all of
    this. They have done absolutely nothing in terms of advising people
    of the seriousness of what's in their backyards."

    As for me, five months and a truckload of antibiotics later, the
    bacterium that invaded my body appears to be receding. My worst
    symptoms are now long gone. Still, soap won't wash away the
    medicinal smell that permeates my skin. My teeth are yellow from all
    the antibiotics. Dr. Baghdadlian tells me that the stain will go
    away as soon as I stop taking the pills.

    "When?" I ask him. He shrugs and sighs. Maybe a few more months.
    Maybe many more.

    Still, I am lucky. I found a doctor willing to do what many doctors
    would not. I am getting better. Slowly.

    It's horrifying to have a disease wrest control of your body. It's
    just as terrifying to struggle in vain to convince doctors of the
    seriousness of your condition — or even its existence. I managed to
    do both, but the most frightening thing of all is that many victims
    of Lyme disease have failed on both counts.

    Susan Bourette, a Toronto writer, has won several awards for her
    investigative journalism.
  13. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    thanks so much, it's perfect for here. I imagine, Ron's uncle Max, the retired Health Cda lab tech would know the (in denial) Stockett fellow, the head of Zoonotics.



    Jeanne
  14. ANNXYZ

    ANNXYZ New Member


    assumption that lyme should be cured in a few weeks of ABX therapy , when soooooo many docs who treat lyme
    continually testify that it may take patients months before improving . Why do the "experts " refuse to acknowlege the facts . If patients did NOT have lyme , they would NOT improve on ABX . I have read many stories about docs who were stricken with lyme who had to take ABX a long time to get better .

    If Ms McCommas had not ignored the experts and gone with her gut instinct , she would be an invalid . Are there problems with taking ABX? Sure ! But what about the risk of sudden deafness , longterm neuropathy , or psychosis ?
    I have a far greater fear of those problems than ABX side effects .
  15. tansy

    tansy New Member

    it's painful too. Some can be related to spinal problems but even they have been made a lot worse by the consequences of borreliosis, inflammation etc. Thanks goodness I found a LLMD who is also a ME/CFS specialist, and message boards like this providing and discussing info which enabled me to make progress in important areas.

    love, Tansy
    [This Message was Edited on 08/21/2005]