People Mag: Forget Sars study Lyme

Discussion in 'Fibromyalgia Main Forum' started by Applyn59, Jun 29, 2003.

  1. Applyn59

    Applyn59 New Member

    People; 16 2003 J.D. Heyman Joanne Fowler in Frederick

    Hidden Plague. Forget about SARS. Lyme disease is spreading steadily,
    and some experts say it can elude the standard cure

    For months no one knew what was happening to Tom Coffey. In the
    spring of 2001 the then 34-year-old radio dispatcher was struck by
    high blood pressure and double vision. By summer's end he was
    suffering from facial palsy, crushing fatigue and joint pain so
    intense he walked with an old man's shuffle. Medical visits turned up
    nothing. By October his weight had plummeted 105 lbs., to 202. "My
    doctor was at the end of his rope," says Coffey. "He kept referring
    me to different people."

    When he awoke unable to swallow his saliva, Coffey rushed to a
    hospital near his Frederick, Md., home and was given blood tests and
    brain scans. Doctors returned with a terrifying diagnosis: ALS, or
    Lou Gehrig's disease, a degenerative illness likely to kill him
    within six months. "Tom's dad said, 'I always thought he'd be burying
    me. Now I'll be burying him,'" says Coffey's wife, Tricia, 35.

    Hooked to a feeding tube, Coffey waited to die. But a relative who
    thought his symptoms might have another cause suggested a trip to Dr.
    Greg Bach, a suburban Philadelphia Lyme disease specialist. The
    doctor found something everyone else had missed--a "bulls-eye" rash
    beneath his patient's hair. Coffey was suffering not from ALS but
    from a severe case of Lyme, which is spread to humans by tick bites.
    For most people, Lyme manifests in a rash and flulike symptoms easily
    treated with antibiotics. Left undiagnosed, however, it can invade
    the nervous system. "I always thought Lyme was no big deal," says
    Coffey, who rebounded after taking medication. "But it damn near
    killed me."

    In fact Lyme is rarely fatal, but as Americans head outdoors during
    the peak infection months of May to July, experts warn that it can be
    devastating--and that the threat is growing. In the past decade the
    disease has spread from the Northeast to every state except Montana.
    Last year the Centers for Disease Control reported 17,000 cases--more
    than double the number in 1990--but researchers like Joseph Piesman
    of the CDC say the actual incidence may be about 10 times higher.

    The illness is also the subject of a growing debate. While most
    doctors believe that Borrelia burgdorferi, the tick-borne spirochete
    that causes Lyme, is quickly killed by medication, many patients
    complain of arthritis, irregular heartbeat, memory loss and motor-
    skill problems long after they have undergone the standard two-to-
    four-week treatment regimen. That has led some researchers to
    conclude that Lyme can return as a chronic illness in perhaps 10
    percent of those thought to be cured. "Lyme is much more serious than
    the public recognizes," says Dr. Brian Fallon, director of Columbia
    University's Lyme Disease Research Center. "People can have severe
    cognitive problems for the rest of their lives." The medical
    establishment, however, remains unconvinced, and a few doctors have
    been penalized for their treatment of recurrent Lyme. Pat Smith, head
    of the Lyme Disease Association, a nonprofit group calling for
    greater research on the disease, thinks pressure not to recognize the
    chronic form comes from insurance companies: "They don't want to

    No one disputes that late-stage Lyme is little understood. Tests are
    often effective only in early-stage infection, and while sufferers
    usually get a rash, they don't always notice it. Worse, many Lyme
    symptoms mimic other diseases: fibromyalgia, multiple sclerosis, even
    mental illness. That means other diseases may be mistakenly treated
    as Lyme--the crux of mainstream objections to the chronic-disease
    theory. "People who test negatively for Lyme are still being given
    antibiotics to see what happens," says Dr. Gary Wormser, head of
    infectious diseases at New York Medical College.

    But Fallon argues that a longer course of medication, given
    intravenously, may be needed for some patients. Coffey's doctor
    agrees. "Half the patients I see have been inadequately treated,"
    says Bach. "These people thought they were cured by being treated
    only a little."

    Coffey, now 37, is taking no chances: He has remained on antibiotics
    for 14 months to be sure that his Lyme is really gone. Still, he's
    grateful to have escaped his death sentence. "I'm starting over
    again," he says. "From here on out, the rest is gravy."

    --J.D. Heyman --Joanne Fowler in Frederick



    --How it works: Recurrent symptoms--from fatigue to joint pain--could
    be caused by Lyme itself or by some other factor, perhaps an
    autoimmune response that lingers after the spirochete is gone.

    --How it eludes detection: The Lyme spirochete may be able to hide
    deep in tissue, where it can elude blood tests and antibiotics.

    Experts do agree on preventive measures: Use bug repellent; wear long
    pants (ideally tucked into socks) and sleeves in brushy areas. And do
    a tick-check daily.

    he Lyme Disease Association has “Reprinted from PEOPLE Weekly’s June 16, 2003 issue by special permission; © 2003 Time Inc. All rights reserved”