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Kaiser Lyme Disease Information
Distribution of Ticks in the United States - CDC Maps 2012
keeps focus on Lyme disease
Independent Journal (San Rafael, CA) - Tuesday, February 21, 2006
when she was living in San Rafael, Katherine Renfield was awakened by a
tick bite on the back of her leg.
bulls-eye rash developed soon after. Her internist diagnosed her as
having Lyme disease . She took a low dose of the antibiotic Doxycycline
for two weeks, and she assumed that would be the end of it.
didn't know much about Lyme disease ," Renfield said. "I wasn't worried
years later, Renfield is still struggling to rid herself of symptoms
she said she believes are caused by
chronic Lyme disease : fatigue and
joint pain. She has been giving herself intravenous injections of the
antibiotic Rocephin twice a day since October. Her insurance company,
Blue Cross, has paid only
$1,120 of the $6,000 cost.
and other Marin residents - a Lyme disease support group meets once a
month at Marin
General Hospital - are at the center of a national
controversy that swirls around this puzzling disease .
who lives in Kentfield, and other Marin Lyme sufferers insist that the
prescribed by the Centers for Disease Control and
Prevention is inadequate. The CDC recommends
administered for 10 days to a month, depending on severity. These Lyme
also assert that many cases go undiagnosed because the CDC's
standard tests fail to detect the
months after her initial treatment, Renfield said she began
experiencing severe eye infections,
rashes, fevers and flu-like
symptoms. Two blood tests recommended by the CDC for identifying
disease turned up positive.
Ellen Guroy, an infectious disease doctor based in Novato, treated
Renfield with a six-week
course of intravenous antibiotics.
eye infections and fevers disappeared. But six months later, Renfield
said, she again was
suffering from joint pain, bouts of fatigue and
cloudy thinking. Dr. Guroy could not be reached for
is being treated by a Nevada City family practitioner, Steven Harris.
Harris, who has
made Lyme disease a specialty, is the son of Nick
Harris, president of Igenex Inc. of Palo Alto,
one of the only private
providers of Lyme disease tests.
Harris also is treating Tom Eddington of Mill Valley. Eddington said he
sought out Harris
after becoming dissatisfied with his infectious
disease doctor. Eddington heard about Harris at
the Marin General
said that most doctors know little about Lyme disease , so they follow
recommendation for a relatively brief course of treatment
a four-week intravenous treatment with antibiotics failed to cure him,
Eddington chose a
more rigorous approach.
in July 2004, Eddington took antibiotics orally and intravenously for
18 months. He is
still taking oral antibiotics and expects to continue
doing so for at least another four to six months.
estimates his treatments have cost him $50,000.
for Lyme is just as controversial as the recommendations for treatment.
2001, federal regulators threatened to shut Igenex down following
complaints by the New York
Department of Health and California's
Laboratory Field Services Unit about the reliability of the
the same year, however, the Centers for Medicare and Medicaid Services
backed off after
being contacted by several members of Congress.
politicians had heard from constituents who said that Igenex was being
learned a lot about how to inform government and politicians about what
we're doing in a
way that bureaucrats can understand," Nick Harris said.
says the CDC's procedure for interpreting the standard tests for Lyme
not sensitive enough," Harris said. "There is probably a backlog of
thousands, if not tens of
thousands, of patients in California with
disease caused by Lyme that have gone undiagnosed.
They've been put
into categories of chronic fatigue or fibromyalgia."
Broad of Mill Valley, a portfolio manager for an investment company in
San Francisco, said
he believes his symptoms - including numbness in
his leg and muscular twitching - is caused by
Lyme disease . Broad has
been tested twice, however, and both times the results were negative.
fact that there is not a wholly reliable diagnostic test is a huge part
of the problem," Broad said.
has been taking various combinations of oral antibiotics since
September 2004. He is
about to begin intermuscular injections of
Witt, chief of infectious diseases for Kaiser Permanente Northern
California, said he would
be "very skeptical" of any diagnosis of Lyme
disease that lacked positive test results.
said he also is wary of testing procedures that deviate substantially
from the guidelines laid
out by the Infectious Disease Society of
America and the American Rheumatologic Association.
are a couple of labs around the country that can find Lyme in almost
anyone," Witt said.
"Unfortunately, the treatments aren't harmless and,
whatever the problem is, a prolonged course
of antibiotics isn't going
to solve it."
most Lyme cases, Kaiser would prescribe no more than a month of
antibiotic treatment, Witt said.
study published in the Annals of Internal Medicine in 1998 reported a
phenomenon of overdiagnosis
and overtreatment of Lyme disease . Of the
209 patients who participated in the study, 60 percent
were found to
have no evidence of current or previous infection. The researchers
found that more
than half of the patients had treatable conditions such
as depression, rheumatoid arthritis and bursitis.
year, the CDC issued a warning about Lyme tests "whose accuracy and
have not been adequately established."
Golden, a deputy public health officer for Marin County, said there
were only six cases of
Lyme disease reported by Marin doctors in 2005
and another six patients who tested positive.
Since 1990, the number of
Lyme cases in the county has remained steady, fluctuating between
Nick Harris said his lab alone reported six positive test results to
Marin residents in the last
four months of 2005 and four so far this
Battilana of San Rafael, whose family member contracted Lyme disease
ago, said she believes the county's numbers vastly
underestimate the disease 's presence in
Marin. Battilana said she has
seen as many as 25 people attend the Lyme disease support
at Marin General Hospital. Battilana hosts a table at a local farmers
where she disseminates information on Lyme .
meet people every week who have been recently infected," Battilana
said. "I'm meeting an
average of two people a week."
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