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Type "Lyme disease" into your computer's search engine
and you'll find yourself in Oliver Stone territory: There
are literally hundreds of belligerent chat rooms and support
groups for patients who think they were misdiagnosed or
insist their Lyme disease just never went away. That an
awful lot of people are out there suffering isn't news.But
dissension has reached the highest levels, with doctors
and researchers dividing into two vengeful and bitter camps
about how to cure Lyme. In one corner is a group of those
predominantl y university-based physicians who develop drugs,
receive research grants from federal health agencies, and
often advise insurance companies. They contend that Lyme
is usually simple to diagnose and easily curable with two
to four weeks of oral antibiotics. Chronic Lyme, they say,
is extremely rare, not a disease but merely a group of symptoms
remaining after the initial infection is treated that usually
disperse. In the other corner stands a group of primary-care
doctors, those on the front lines who see Lyme patients
every day, and a number of other scientists -- all of whom
maintain that the illness is far more complicated. Late-term
or lingering cases of Lyme disease, they say, may require
six months or more of oral antibiotic therapy and intense
intravenous therapy -- which some like to administer in
a hyperbaric chamber. They believe that the increased oxygen
of the chamber helps kill the tenacious spirochetes -- known
as Borrelia burgdorferi -- deposited by the blood-sucking
deer tick. Burrowing rapidly into the tissues, joints, and
central nervous system, borrelia slightly resembles the
syphilis spirochete in the way it feeds, sleeps, and reproduces.
Detractors have accused the more aggressive camp of overdiagnosing
and overtreating patients. But lately, they're going even
further: Some of the fourteen "Lyme literate" M.D.'s (as
they're known to their supporters) in five states who have
been targeted for investigation by state health departments
have already lost their licenses. Others may be about to.
Insurance companies have taken to not covering the treatments,
and doctors are thinking twice before accepting any patient
with Lyme symptoms. By far the most renowned of the fourteen
is Dr. Joseph Burrascano, of East Hampton, who for the past
fifteen years has treated thousands of Lyme patients from
all over the world. Having openly attacked the conservative
academic coalition for what he sees as its failure to come
to terms with the realities of the disease, Burrascano has
made few friends within the Lyme Establishment. That's why,
he believes, he's now been put on notice by the New York
State Department of Health's Office of Professional Medical
Conduct (OPMC), where investigators are preparing for an
as-yet-unscheduled disciplinary hearing. Aside from the
general accusation of professional misconduct, Burrascano
has still not been informed of the specific charges against
him. No one disputes the classic symptoms and treatment
of early Lyme disease: The patient has recently been near
a woodsy area and sometimes develops a bull's-eye-shaped
rash two inches or more in diameter and flulike symptoms.
A blood test shows evidence of borrelia, and a short course
of oral antibiotics is administered. But there are those
who don't fit this model: Since borrelia lives in tissues,
not blood fluids, the two standard blood tests -- elisa
and the Western Blot -- can measure the body's reaction
to the germ only by finding antibodies and not the germ
itself. Too often, there are false positives or negatives;
some say the rate of inaccuracy on both tests can be as
high as 40 percent. Those who do receive the basic treatment
for Lyme disease -- and appear to be cured -- have been
known to become ill again. But is this a relapse? A reinfection?
An entirely different syndrome? Doctors can't seem to agree
on whether it's 5 percent or 20 percent of all Lyme patients
who go on to manifest chronic symptoms. People whose blood
tests are repeatedly negative and who don't manifest standard
symptoms simply don't have Lyme, say the more conservative
doctors. But Burrascano and his colleagues note that victims
whose symptoms don't match the classic criteria are left
out of National Institute of Health studies and omitted
from vital Centers for Disease Control statistics. Later-stage
Lyme patients may be told they've been cured but are now
suffering from post-Lyme syndrome, a lingering set of autoimmune
symptoms triggered by the original, defunct infection. Antibiotics
are not prescribed for this condition. Doctors like Burrascano
say "post-Lyme syndrome" is nonsense: The infection simply
never went away and requires more antibiotics. (Of course,
insurance companies prefer the post-Lyme diagnosis, which
requires that no further drugs be administered.) Patients
who continue to deteriorate and have negative blood tests
may be told to see a shrink. Pat Pepper says she was never
initially treated for any Lyme infection. Suffering from
a sore throat and intense headaches, the blonde former mayor
of West Palm Beach who now divides her time between Miami
and New York was growing progressively weaker. Pepper consulted
more than 30 leading neurologists and internists. All the
doctors told her she had incurable, fatal amyotrophic lateral
sclerosis (Lou Gehrig's disease) and had only two to five
years to live; after all, she'd had seven negative Lyme
tests. Pepper eventually took more expensive, more exacting
tests that looked for the presence of spirochete DNA or
the outer membranes shed by spirochetes. These tests immediately
revealed rampant borrelia infection. (Animal inoculation,
which is injecting an animal with fluid from the Lyme victim,
then analyzing its tissues in an autopsy or biopsy, is another
method.) Pat Pepper was finally wheeled into Dr. Burrascano's
office, nearly quadriplegic. Burrascano warns patients that
their symptoms may get much worse during his treatment before
they get better because spirochetes put up a nasty fight.
Spirochetes in the dormant phase of their reproductive cycle
(ranging from ten months to fourteen years) survive the
antibiotics,which is why it takes many courses to obliterate
them all, says Burrascano. Though his treatment usually
takes from one to six months, it was a year before the spirochetes
completely disappeared from Pepper's blood tests. "Since
July of '98, when I first saw Dr. Burrascano, my health,
for the first time in seven years, has been improving,"
says Pepper, who recently graduated from her wheelchair
to a walker. Lyme disease was identified by Yale University's
Dr. Allen Steere in 1975. An epidemiologist with a background
in rheumatology, Steere studied a group of Lyme, Connecticut,
children who seemed to have a new kind of arthritis. Six
years later, "Lyme arthritis" was instead proved to be a
bacterial infection. But by that time, the NIH had assigned
Lyme's research funding to its arthritis branch. Critics
say this branch remains biased toward research related to
arthritis, inflammatory conditions, and auto-immune disorders;
doctors and scientists pursuing Lyme research related to
infectious diseases find it difficult to receive NIH funding.
Dr. Raymond Dattwyler, professor of medicine and chief of
Stony Brook University Medical Center's Division of Allergy
and Clinical Immunology as well as of its Lyme Disease Center,
insists, "There has been no clinical trial that demonstrates
long-term treatment [of Lyme] is beneficial." "There's a
bibliography of over 60 different scientific studies in
worldwide medical literature," counters Burrascano, a boyish
48-year-old, "showing that in people who are still sick
after the standard treatment, when you do these more advanced
tests, you find that, by and large, they're still infected."
Some argue that Burrascano's tests are no more statistically
reliable than the standard ones. Further, there are risks
associated with lengthy antibiotic treatment -- phlebitis,
sepsis, colitis, allergies, gallstones, and liver damage.
Patients feel better after the hyperbaric chamber , they
say, because they're high on all thatoxygen. People who
complain they have continuing symptoms may think they have
chronic Lyme because out of eleven blood tests, one showed
a weak positive result, according to one Manhattan physician
who sees a lot of Lyme. But the truth is that this result
is most likely a false positive. "Prescribing long-term
antibiotics would be like giving them chemotherapy for high
blood pressure," says this physician, who's seen patients
diagnosed with Lyme when they actually had Parkinson's or
MS: "It was terrible to disappoint them." The doctor spoke
under the condition of anonymity because "the whole field
of Lyme disease is way too political." Studies cited by
the conservative doctors have run in publications like the
JAMA; Burrascano and his colleagues quote distinguished
yet less familiar journals, many of them foreign. "There
are three spirochetes that cause Lyme disease in Europe,
only one of which exists here in North America," says Dattwyler.
"That's why you can't directly correlate this European research
to North America." Clearly, there isn't enough definitive
research to tip the balance in either direction. But an
ethics probe probably can. Dr. Perry Orens expanded his
general and cardiac Great Neck practice to include Lyme
patients after his daughter contracted the disease (and
was cured by Burrascano in 1986). He lost his license to
practice medicine in November after an OPMC hearing; protestors
showed up with placards outside. "Ordering excessive tests
and/or treatment and inaccurate patient records" were among
the hearing's findings, typical charges in such cases. (Orens
was also found guilty of gross negligence and fraud.) Dr.
Dattwyler, who testified as a Lyme-disease expert, says
the finding of misconduct "had nothing to do with Lyme.
. . . It was about inappropriately medicating a [chronic
Lyme] patient who almost died as a result." In 1993, Burrascano
accused NIH and CDC Lyme-disease grant recipients of improprieties
at a Senate committee hearing on Lyme research. Funding
was being directed toward rheumatologic and arthritic autoimmune
problems he alleged, and some post-Lyme-syndrome advocates
who were taking the grants had worked as paid medical consultants
for insurance companies. Shortly thereafter, the OPMC began
investigating Burrascano; he has had to turn over his records
three times and submit to formal interviews twice. Each
time, the investigation was left open -- which many say
is highly unusual. For Burrascano's defense, his lawyers
may cite two new NIH grants for research toward determining
why some patients don't recover after the standard antibiotic
treatment. One of the grantees is Arthur Weinstein, a conservative
physician and professor of medicine and chief of the Division
of Rheumatic Diseases and Immunology at New York Medical
College. Weinstein helped develop current standards for
Lyme testing. "Lyme patients claim to feel better on antibiotics
and relapse when they stop,"Weinstein has said. "But this
is not typical in treating other infections." He'll try
to discover whether the bugs are hiding and start growing
again when the antibiotics are stopped, or patients are
really just experiencing a placebo effect. It's also possible
that protracted antibiotic use doesn't kill bugs but merely
has some other chemical effect on the brain. Burrascano
isn't pleased that a member of the conservative faction
is running this study. But he does agree that this commission
is notionally helpful, confirming that there is some debate
about what this illness is and what its treatment should
be. "Everything I do is based on articles and literature
and my observations and those of my colleagues," he says.
"I don't do crazy things. I don't sell drugs or get kickbacks
from the companies promoting the drugs. I do it because
it's right."
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