Article: lyme disease in Canada

Discussion in 'Fibromyalgia Main Forum' started by tansy, Aug 21, 2005.

  1. 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.
  2. ANNXYZ

    ANNXYZ New Member

    Thank you bunches Tansy !
  3. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    As much as I've dissed the CDC about their Lyme dxing, it seems Canada is much worse. We seem to have a blame it on the States approach, like Canada is Holy ground and tics wouldn't dare proliferate their evil Lyme spore here.

    I found this article and protest letter to Cdn govt here: http://www.ccmadoctors.ca/Lyme%20disease%20letter.htm


    JEanne
    ****************

    Hello

    My name is Jim Wilson, Lyme Disease victim, father of a Lyme Disease victim and President of the Canadian Lyme Disease Foundation.

    A fellow Lyme patient directed me to your web site as we all use various forms of alternative treatment at some point.

    Treating Lyme Disease many times involves these alternative treatments to augment the bodies ability to deal with the disease and the antibiotic load required to properly treat this infection.

    A small example is we (my daughter and I) take Milk Thistle, Vitamin B6, Selenium and Magnesium specifically for Lyme. In fact the Magnesium drip that my family doctor ordered greatly improved nerve conduction to my outer limbs. The Milk Thistle almost immediately stopped my liver swelling which had been a symptom in the years prior to treatment when I was told I had many different things by many different doctors and continued during and after treatment.

    Our doctor often uses alternative methods to treat his patients and he readily defers to my Lyme doctors expertise in that field.

    We are in a desperate situation in Canada with Lyme disease. This is a very serious illness not being taken seriously by the entire medical machine. A young lady just died at the age of 20 after three years of being told it was CFIDS then FM and that it was all in her head and to go home and get on with life. Her heart stopped. A grandmother died suddenly in Saskatchewan after years of being ill and not until her daughter who lived with her was diagnosed with Lyme and shared her mothers symptoms did they think Lyme may have been the cause of death (no autopsy).

    My daughter leaves tomorrow to see a Lyme literate cardiologist to deal with her heart block.
    She, with myself and her mother in the room, was told by our local cardiologist that her 1st degree AV heart block was not a symptom of Lyme and that he could pick almost anyone off the street and they would have similar problems. Our daughter almost loses consciousness many times. This is her only lingering problem after she lost high school years without being able to get out of bed most days. She was treated with IV ceftriaxone for 3 months but didn't see any improvement until week seven, then it was dramatic. All those unnecessary years wasted. She is more than willing to live with a pacemaker because it is nothing from the way she was pre-treatment.

    These stories are the same in every Province in Canada.

    We NEED more doctors who will recognize this as a 'clinical' diagnosis. The present blood testing method in Canada requires firstly that an ELISA be done (which in US CDC studies has been shown to be only 35% accurate) then if positive a confrimatory Western Blot with an overall accuracy in the 65% range. Combine this with all the misdiagnosed people and we are looking at about a 95% missed diagnosis rate.

    Here is a copy of a letter I wrote to Dr. Harvey Artsob (National Microbiology Labs) who seems to speak on the subject of many diseases in Canada and is quoted by Provincial health authorities when we inquire. This letter was c.c.'d to all Provincial Health Ministers.

    Below that is a letter sent to Hon. Anne McLellan, Ottawa, at an earlier date. Many people across the country have been writing but keep getting the generic response that the medical machine is dealing with it.

    If any of your doctors are willing to treat Lyme patients using all that is available please, please let us know as we have people from every Province desperately seeking this.

    Thanx.

    From: Jim
    To: hartsob@hpb.hwc.ca
    Cc: info@cmq.org ; hw_sme@gnb.ca ; GeraldSmith@gov.nl.ca ; Minister_Ministre@hc-sc.gc.ca ; gary.mar@gov.ab.ca ; minister@health.gov.sk.ca ; minhlt@leg.gov.mb.ca
    Sent: Wednesday, September 10, 2003 3:35 PM
    Subject: Lyme Disease Information

    Attn: Dr. Harvey Artsob, Health Canada, et al

    There are questions that need responding to.

    Do we as a country have any idea of how much 'clinical' Lyme Disease there is?
    What are the vectors in each province?
    Is there nationwide surveillance?
    Has there been any studies on the correlation between the CFIDS, FM, ALS, MS, JA, OA, and Psychiatric Illness clusters in Canada and an infected tick population?
    We have an epidemic (or combined pandemic) of these mentioned diseases and disorders.
    We have a large population of very sick people who after many misdiagnosis' respond well to Lyme Disease treatment after clinical Lyme is diagnosed.
    It appears to be epidemic in many areas in Canada yet the focus is on the relatively few SARS and West Nile virus cases.
    How many deaths in Canada have been attributed to Lyme?
    Why do so many hunters, loggers, farmers, gardeners, hikers, cabin/cottage owners, campers etc. end up ill with Lyme like symptoms?
    Why in endemic areas are doctors not being advised of this as a differential diagnosis to the many similarly presenting illnesses?
    Why do our labs not publish a caveat on each return of results, re: Lyme Tests, to the effect that the ELISA and WB not are not to be used to confirm Lyme Disease but only to augment a 'clinical ' diagnosis? Many US labs do publish such a caveat as does the CDC.

    Regards
    Jim Wilson
    www.canlyme.com

    Next letter:

    Dear Minister Anne McLellan

    There is a crisis in Canada and BC especially.

    We are told there is very little Lyme Disease and its many confections in Canada.

    I live in Westbank near Kelowna in the Okanagan Valley. My daughter has Lyme Disease, many others in this small town and throughout BC and the rest of Canada have Lyme Disease.

    My daughter now may need a pacemaker. She virtually lost the last year of high school, could seldom get out of bed other than to attend a limited schedule (mostly doctor appointments) and had many visits to the emergency dept of our local hospital for heart problems. Her ability to concentrate, think and take in the world around her was greatly affected. Her bowels, stomach, hearing, eyesight and joints were affected.

    A young lady passed away here after three years of a similar hell my daughter went through.

    Our local CHBC News channel aired a story in July 2003 of a Kelowna girl with the "classic" bull's eye rash that the local doctors assured her was not lyme disease. I have since been told of two others just in my little town. That rash (Erythema Migrans) is 100% diagnostic of Lyme as per the US CDC reportable disease criteria (from which I have no choice to quote as Canada has no info):

    "Clinical case definition
    bullet Erythema migrans, or
    bullet At least one late manifestation, as defined below, and laboratory confirmation of infection

    Laboratory criteria for diagnosis
    bullet Isolation of Borrelia burgdorferi from clinical specimen, or
    bullet Demonstration of diagnostic levels of IgM and IgG antibodies to the spirochete in serum or CSF, or
    bullet A two-test approach using a sensitive enzyme immunoassay or immunofluorescence antibody followed by Western blot is recommended (1). "

    What is the crisis?

    1.) We have no surveillance of this disease in Canada, the fastest growing vector disease in the world.

    2.) Our medical system is not only in denial but is interfering with the diagnosis of the disease.
    ....In my daughters case, the idea of Lyme Disease was brought up by myself with her cardiologist and family doctor. The family doctor admitted he knew very little of the disease and its diagnosis. Her cardiologist confidently reassured her that it was not Lyme Disease as Lyme Disease is so rare and requires 2nd or 3rd degree heart block and hers was only 1st degree (1st degree heart block is I found out one of many heart related problems from Lyme Disease). Any of her other symptoms were outside his specialty so he did not have the time nor willingness to care.
    A Lyme Disease blood test was ordered via our family doctor who was very concerned about her health, from our BC CDC lab and the test was negative. After all I read of the disease I discovered that the blood tests used by our labs in BC (and Canada) are so poor that they miss the majority of cases (as stated by the US Centers for Disease control the EIA/ELISA tests only caught 30 % of cases in their own trials).

    I found a doctor in BC, Dr. Murakami of Hope BC who is not only a practicing MD but a Lyme Disease Consultant, Professor Emeritus, Faculty of Medicine, UBC, and lecturer on Lyme Disease. He worked with our family doctor who happily deferred to his expertise.

    I asked him about getting tests done in the US as they were far more reliable I had discovered. I had a lab in mind from my own research and questioned him of the lab. He too has had to use this lab and others.

    My daughters blood was sent at my cost (approx. $300 cdn) and she received a positive Western Blot IgG for Lyme Disease. Had I not been able to afford the $300...

    Our own labs do not accept outside results as they 'have no method of quality assurance' even though these labs are certified by their State and used by many University Hospitals and other institutions.

    My daughter was prescribed 3 mos. IV ceftriaxone by Dr. Murakami (a very common treatment for late stage Lyme Disease as research shows time and again).

    Our local Infectious Disease doctor controls the pharmacy at the hospital. He told the pharmacy to cut her off after 4 weeks as that is enough to treat Lyme. Luckily we had coverage and could continue the treatment otherwise it would have cost us about $4000.00 to pay for the next two months. Had we been like many in Canada, without coverage...

    The most horrifying thing was that she did not even begin to improve until the 7th week of treatment. The improvement was dramatic. She went from a teen who virtually had no life to a vibrant young lady. She is able to work and pay taxes now whereas had this treatment not been completed she would have no doubt had to be on disability if she survived. Had this doctor in control of the pharmacy (who had never met my daughter ) had his way and had we not had the ability to pay, we would not have seen this recovery.

    Whose lab tests were more likely correct?

    How one doctor in our system can interfere with another doctors diagnosis and treatment is beyond me. What the hell is the good of our medical education system if we produce such poor doctors that they have to be overruled by other (much younger and much less experienced in that field) doctors??

    I refer you to http://www.cdc.gov/ncidod/dvbid/lyme/distribution_density.htm
    which shows the spread of Lyme in the US (again no such Canadian Info). This was taken from a map of four years ago. Note the Washington State upper NW and the Alaskan panhandle...but it is rare here? Dr. Murakami is run off his feet but is being intimidated by the medical machine.

    We have ticks that jump off the birds and animals at the border crossings...how nice of them.

    Since then all bordering states have seen dramatic increases in Lyme and Lyme like diseases ie. http://www.grandforks.com/mld/grandforks/news/5787316.htm

    The US CDC has reported over 145,000 cases since 1992 and they estimate this number is off the mark 10 fold as a result of their strict criteria and the many misdiagnosis' of the disease.
    The front line doctors in the treating practices estimate that number can be doubled again putting the number of cases well over one million and possibly as high as three million.

    Are we that naive as to put that many Canadians who are very sick (see the Canadian Lyme Disease Foundation web site http://www.canlyme.com) in jeopardy. Talk to the Scott's in Ontario under the Area Support link or the other people from across our not so great nation.
    Talk to Dr. Murakami who is baffled by the resistance of those in control to recognize this for what it is...an epidemic which will affect you and/or your loved ones some time in the not too distant future. As the earth's temperature rises we will see this increase dramatically.

    Dr. Murakami in BC has had to resort to putting some patients health at risk getting a diagnostically unnecessary spinal tap to prove that our labs are missing the boat. Once a positive PCR is secured from spinal fluid not one person can refute the evidence, this is the DNA of the Lyme spirochete bug. The unfortunate thing is that the chances of getting a positive PCR are even worse than the other tests. He has done this to show that the US labs show positive for Lyme, while our Canadian labs show negative, but these same patients have positive PCR.

    We have our head in the sand on this one while our butts are getting burned.

    We have developed a system of medical "specialists" who are so afraid or uneducated to step outside of their own specialty that they do not even want to hear of those symptoms...they will just refer you to another 'specialist' and eventually you end up at an Infectious Disease doctors door who won't make a diagnosis of Lyme come hell or high water. Why is this? Why do they control our hospital pharmacies?

    One local person here was diagnosed by his Veterinarian, after unnecessary knee surgery and a suggestion by his doctor to have the other knee operated on so he then he sought help from a very resistant medical community. He has since been treated and no longer uses his cane nor crutches.

    Vets don't "specialize" and have to know more than one species. You bring in a dog they treat all of the dog, You bring in a rat they treat all of the rat. I think we would all be better off seeing vets.

    Wake up Canada...Lyme is here in a big way...the blood tests are poor even at the best labs and that is why even the CDC in the US states that it is to be a "clinical" diagnosis based on symptoms and history not bloodwork and I quote: "The diagnosis of Lyme disease is based primarily on clinical findings, and it is often appropriate to treat patients with early disease solely on the basis of objective signs"

    Amazing how few of our "specialists" diagnose Lyme Disease.

    Change the reporting criteria...if it is a clinical diagnosis until science catches up with some better tests then don't require blood tests for a reportable case. Even the rash occurs in only a few people so it should not be used either unless present.

    Why educate our doctors, put them in control of something as trivial as our lives and then not trust their judgment for a reportable disease?

    How many unnecessary knee replacements, hip replacement, hospitalizations, heart surgeries etc. are actually tick borne disease related? There is a general consensus that a lot of arthritic disorders, heart disorders etc are bacteriological in nature...perhaps we found the bacteria.

    I am not alone on this... see http://www.canlyme.com/pandora.html

    Am I missing something...why is Canada not researching this disease...why is it not being tracked?

    How do we know what we have here or is this intentional...we'll call it all arthritis of various sorts or chronic fatigue syndrome or fibromyalgia but we won't call it Lyme. Why?

    Jim Wilson
    2495 Reece Rd.
    Westbank BC
    V4T 1N1
    250-768-0978

    Lyme Disease has been implicated in all of the above cases by many researchers who have found the disease either on autopsy, biopsy, PCR and other irrefutable tests.
    Regards
    Jim Wilson
    www.canlyme.com

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