New lyme
guidelines aim to help mds detect illness
International group
also provides advice on treating chronic cases
STAR-LEDGER
Newark NJ
by Angela Stewart
18 Mar 2004
A group of medical
experts who believe Lyme disease can be a chronic illness—a controversial
notion in itself—have come up with a series of guidelines aimed at
educating doctors on how to recognize and treat the disease.
The guidelines were
written by a working group of the International Lyme and Associated Diseases
Society—a Maryland organization that describes itself as having more
than 200 medical experts specializing in the direct treatment of Lyme
patients.
Relying heavily on
published literature, the guidelines provide general advice in areas ranging
from antibiotic use and duration of therapy to recognition of symptoms.
Some of the new guidelines
run counter to accepted medical principles, such as reliance on blood
tests to diagnose Lyme disease. The guidelines contend that lab tests
should not be used to exclude an individual from treatment.
“That is how
we diagnose Lyme, by blood tests,” said Elizabeth Chalom, director
of pediatric rheumatology for Saint Barnabas Medical Center in Livingston.
“There are so many different illnesses that can have the same exact
symptoms as Lyme. If we just based our diagnosis on clinical criteria,
you can’t differentiate one illness from another.”
Lyme can produce
symptoms ranging from fatigue and sleep disturbances to neurological problems
like memory loss and difficulty concentrating. Severe pain, numbness,
chest pains and depression also have been associated with the disease,
which peaks in the warm months when the tick population is at its height.
Society officials
say the guidelines—published by the British organization Future Drugs
Ltd.—are flexible and are simply meant to provide doctors with the
confidence they have sometimes lacked when trying to detect and treat
the disease.
“It’s not
a cookbook on how to treat Lyme disease. It cites appropriate literature
on the topic and gives doctors a framework on which to base a logical
progression of therapy,” said Steven Phillips, a Ridgefield, Connecticut
internist, who serves as the society’s president.
New Jersey ranks
fourth in the nation in Lyme cases, with 2,300 to 2,400 cases being reported
to the Centers for Disease Control and Prevention every year, according
to Pat Smith, who heads the Jackson-based Lyme Disease Association. Not
all cases are reported, she said.
Andrea Gaito, a Basking
Ridge rheumatologist, said doctors have been seeking more guidance on
handling patients with Lyme-like symptoms. As immediate past president
of the International Lyme and Associated Diseases Society, she said she
receives calls all the time from physicians who have difficulty diagnosing
the disease.
Four years ago, the
Infectious Diseases Society of America published its own set of guidelines
for the treatment of Lyme, touching on everything from management of early
Lyme to handling patients with late-stage disease. But the International
Lyme and Associated Diseases Society criticized those guidelines as “falling
short of meeting the needs for diagnosis and treatment,” especially
as it relates to individuals with chronic Lyme disease.
Chronic Lyme is described
in the new guidelines as a growing epidemic characterized by individuals
with “persistent, recurrent and relapsing symptoms.” The Infectious
Diseases Society’s guidelines, which were published in 2000, contend
there is “insufficient evidence to regard chronic Lyme disease as
a separate diagnostic entity.”
“We stand by
the society’s current guidelines on Lyme disease, which are evidence-based,”
said Diana Olson, a spokeswoman for the Alexandria, Virginia-based society.
The new guidelines
say Lyme treatment should be based on “the severity of each case,
the patient’s response to therapy and the physician’s own clinical
judgment.”
Donna Bildstein,
47, of Delaware Township in Hunterdon County is convinced she was walking
around with the disease for more than a year because a doctor exercised
poor clinical judgment. He dismissed her arthritis symptoms—which
included back pain and pain in her joints—as a sign of aging. He
didn’t even want to give her a blood test, she recalled.
When she begin to
develop tremors in her arms and hands, along with difficulty with short-term
memory, Bildstein knew it was something more. She found a doctor who would
listen, but making the diagnosis for Lyme still wasn’t easy. That’s
because Bildstein didn’t exhibit the characteristic bulls-eye rash
that frequently appears near the site of the tick bite in Lyme patients.
A blood test also came back inconclusive.
“You get to
a point where you’re thinking you’re crazy because nobody is
willing to believe that something is wrong,” she said.
And there is disagreement
about treatment as well. Even in chronic cases, some physicians still
subscribe to a short course of antibiotic therapy, while others believe
in more intense, prolonged therapy, despite published studies that have
found the latter to be no more effective.
“The duration
of therapy should be guided by clinical response, rather than by arbitrary
treatment course,” the new guidelines state.
Today, Bildstein
reports she is “85 percent recovered,” thanks in part to a prolonged
course of intravenous therapy. But she admits she still takes arthritis
medicine and occasionally has problems with her short-term memory.
“At least my
stamina is back up to where I can work and take care of my family,”
she said.
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