Geographic Distribution of Ticks in the United States - CDC Maps 2012
by the controversy bug
grows on the threat of the insect-spread Lyme disease along with the
number of cases nationwide.
July 20, 2005
took years for Miguel Perez-Lizano's baffling collection of pains to
gather: a racing heart, blurry vision, aching joints and bouts of
fatigue and forgetfulness.
it took the Battle Ground, Wash., man just minutes to enter a medical
melee -- the increasingly fierce and political debate over Lyme
2000, Perez-Lizano typed his symptoms into an Internet search engine.
Among the results was "When to Suspect Lyme," an article by the late
New Jersey physician Dr. John Bleiweiss. It reminded Perez-Lizano of a
round, red rash, the size of a dinner plate, that erupted on his chest
after a 1994 driving trip through Oregon and California.
when it all sunk in," Perez-Lizano said. "It was me that diagnosed
consider the hallmark "bull's-eye" rash enough to diagnose Lyme
disease. But Bleiweiss was just warming up. The article connected more
than 150 other symptoms and conditions to the illness. It mentioned
well-documented Lyme problems such as arthritis, fatigue, and certain
heart and nerve problems. The litany also covered scores of symptoms
seldom linked to Lyme: anorexia and vertigo. Parkinson's disease and
Tourette's syndrome. Insomnia, sleepiness, low libido, high libido,
sweating, stuttering, stillbirth, strokes, sore throat, psoriasis,
sinusitis, sound sensitivity and spastic colon.
went to his doctor for a final diagnosis but didn't get one: "He said,
oh, I was believing in a conspiracy." So Perez-Lizano got a test from a
California lab that confirmed his suspicions, and soon started taking
antibiotics mailed by a Mexican doctor. Eventually, a California doctor
who treats many patients for Lyme disease, including a dozen
Oregonians, oversaw a couple years of antibiotic treatment that
Perez-Lizano said have resolved his Lyme issues.
tale captures all that bothers both sides of the "Lyme Wars," a debate
on the true nature and threat of the country's most common
insect-spread disease. That argument, already raging in the East, is
spreading West, fueled by Internet facts and fictions, and an increase
in Lyme diagnoses -- a trend the debate may be feeding.
a national sociological phenomenon," said Robert Lane, an insect
biologist at University of California at Berkeley. "The basis of which
-- after all these years working in the field -- is not entirely clear
to me. But there are two camps."
includes patients, advocates and a group of self-ordained
"Lyme-literate" doctors who say the disease is far more dangerous and
common than mainstream medicine recognizes. That's especially true,
they argue, for a tenacious chronic form of the disease that needs
months or years of antibiotic treatment.
less scientific backing for its views, this faction has increasingly
turned to politics: Several states have considered or passed laws
supporting doctors who treat Lyme with years of antibiotics. Two
Lyme-focused bills are pending in the U.S. House of Representatives.
And this spring, a California Senate resolution called Lyme disease "a
hidden epidemic that presents a major health threat" and endorsed the
Lyme-literate doctors and long-term antibiotics.
other camp holds mainstream infectious disease doctors and researchers,
who call Lyme the latest "pop" diagnosis for unexplained syndromes of
aches, pains and fatigue. They acknowledge that a small number of Lyme
patients have lingering symptoms, for little-understood reasons. But
they call the disease overdiagnosed, especially chronic Lyme, and say
long-term antibiotic treatment is unscientific and risky.
disease -- a bacterial illness spread by the bite of an infected tick
-- is, in fact, increasing. The U.S. Centers for Disease Control and
Prevention logged 21,273 cases in 2003, the most recent year with full
data, up from 8,257 cases in 1993. The CDC says the actual number of
infections is significantly higher because many cases aren't reported
to health officials.
makes Lyme the main illness spread by insects in the United States. But
many diseases spread by food or humans are more common, including the
flu, salmonella and AIDS infections. And though Lyme can cause
significant health problems, especially if not cured quickly, it is
rise of Lyme is driven by cases in the Northeast. In the West, evidence
shows the illness is uncommon. Scientists have found infected ticks in
Oregon and California, especially coastal counties in Southern Oregon
and Northern California. But rates of tick infection are far lower than
in the East.
are rates of human infection. Oregon doctors report roughly 15 cases of
Lyme disease a year to public health departments. In 2004, preliminary
reports show 33 cases, the most since statewide reporting began in
1994. And Lyme is probably underreported in Oregon, as elsewhere. But
there is no reason to think the disease is as common as in Eastern
states, said Dr. Mel Kohn, Oregon's state epidemiologist.
real. It's here. It's not zero," Kohn said. "But, gosh, compared to a
whole lot of other health threats you have, the risk is much lower."
California, with its huge population, reports fewer than 100 cases a
year. That probably is also an undercount, and a new law requiring labs
to report positive tests should yield a bigger and more accurate count,
won't be in the thousands, like some states in the Northeast," he said.
"It'll be in the hundreds."
is an illness tuned for controversy. Symptoms can be subtle or
shifting, mimicking other diseases and delaying diagnosis.
general phases mark Lyme disease, with an acute phase starting a few
days to a month after an infectious tick bite. The hallmark red rash
develops in 60 percent to 80 percent of cases, and flu-like aches and
fatigue often accompany. Many cases with these classic signs are
spotted early and cured with several weeks of antibiotics.
problem," said Dr. John Townes, an Oregon Health & Science
University infectious disease expert, "is that the initial symptoms can
not treated early, the bacteria can spread and affect different body
systems, sometimes mimicking other diseases. Infected people may
develop smaller, scattered rashes; nerve problems, such as meningitis
or facial paralysis; and joint pain or certain heart-rhythm problems.
the bacteria survive, a "late disseminated" disease stage could begin,
often marked by arthritis and sometimes nerve problems, fatigue and
this fickle ailment starts the Lyme Wars. The CDC recommends a series
of two tests that look for antibodies to the Lyme bacteria. But the
tests can miss some cases or catch old infections already defeated by
the body. The U.S. Food and Drug Administration says Lyme tests "should
never be the primary basis for making diagnostic or treatment
decisions," only confirm diagnoses made by studying patents' symptoms
and risk of exposure to infected ticks.
lack of a good test troubles both camps in the Lyme debate. Patients
such as Perez-Lizano say that, even if they have a classic history of a
rash and Lyme symptoms, doctors will use tests to rule out Lyme
some turn to a cottage industry of alternative tests. Many of these are
not backed by rigorous scientific proof, such as a urine test the
federal government recently warned against using. Other labs and
doctors use the more traditional blood tests but interpret them more
liberally. That practice might avoid missing real cases, but it
increases the risk of diagnosing Lyme disease in patients who don't
imperfect tests, several Northwest residents told a similar tale of
being diagnosed with Lyme.
doctors say Lyme disease is absent in the state and don't consider the
ailment when diagnosing patients, said Theresa Denham, who founded the
Oregon Lyme Disease Network advocacy group. So people collect a series
of opinions from several doctors until they end up with a Lyme
diagnosis, often from an out-of-state physician.
of the people, by the time they call the Lyme network, have been
diagnosed with about four major illnesses," said Denham.
who lives in the Bend area, started the network after her daughter was
diagnosed. Ashley Denham, now 18, said she was infected with Lyme
disease at age 6 and not diagnosed until 14. In the years between, she
said, doctors told her Lyme didn't exist in Oregon and offered other
diagnoses, such as a "post-viral syndrome," for symptoms including
fatigue, fevers and leg and back pain.
have to be really aware of what the symptoms are, and advocate,
advocate, advocate to get a diagnosis," said Theresa Denham -- who was
also diagnosed with Lyme four years ago.
Oregonians, including the Denhams, travel to doctors in the East or in
California who think Lyme disease is not taken seriously enough,
especially in the West.
is actually the most difficult state in the country to get diagnosed
and treated," said Dr. Steve Harris, a Californian who said he has seen
"30 or 40 patients from Oregon."
several Oregon infectious disease experts said there is a good reason
the disease is rarely diagnosed here: Few people have it.
is increasingly common is patients who think they have Lyme disease,
not actual cases, said Dr. David Gilbert, an infectious disease expert
at Portland-based Providence Health Systems and past president of the
Infectious Diseases Society of America.
have seen, in maybe 35 years of doing this, at the most two or maybe
three cases," he said. "Most of the individuals we're talking about,
their clinical and lab pathology is stone-cold normal."
said that "throughout the history of medicine" some people have
developed a set of nagging symptoms -- often including pain, fatigue
and depression -- without an obvious cause. Some of these patients
search for an explanation on their own, which creates a series of pop
diagnoses that parade like fashion trends through medical offices.
yeast infections were a popular theory for a time, he said. "It was
fibromyalgia for a while, and maybe still is," he said. "But I think,
unfortunately, Lyme disease will take longer to fade away."
is an attractive explanation for mysterious ailments, Townes said,
because "people want to have something they can treat with an
bacteria-killing drugs are the Lyme Wars' second front.
are the standard guidelines that Lyme is relatively easily diagnosed
and treated," which is not always the case, said Rita Stanley, a
Portland resident who ran a Lyme support group based at Legacy Good
Samaritan Hospital for a decade. On the other hand, she said, "There is
no consensus whatsoever in the types of treatment that the so-called
Lyme-literate doctors are offering."
guidelines recommend several weeks of antibiotic pills for Lyme
disease. For systemic infections, especially with nervous-system
problems, the CDC suggests intravenous antibiotics for "four weeks or
more, depending on disease severity." Even with that treatment, a
minority of patients have pain, fatigue and cloudy thinking that linger
for months or years.
those people we don't really have good treatment," Townes said. "And
this is where one of the controversies arises."
faction focused on aggressive treatment says Lyme bacteria are
amazingly hardy and able to withstand heavy antibiotic doses. Several
Lyme patients said they felt much better on antibiotics but only after
years of treatment.
really need to treat this for a long time" in such cases, said Dr.
Raphael Stricker, a California hematologist who treats about a dozen
Oregonians for Lyme. Stricker is president-elect of the International
Lyme and Associated Diseases Society, a group formed by the
Lyme-literate doctors to advance their diagnosis and treatment views.
other doctors call months or years of antibiotics dangerous. The drugs
have well-known risks, including infected IV lines, allergies and the
development of drug-resistant germs. The Infectious Diseases Society of
America recommends more than a month of antibiotics only in rare cases,
such as arthritis that recurs after initial treatment.
doctors don't know exactly what causes lingering pain in some patients
after treatment. One theory is that the body may have a sort of
auto-immune reaction, continuing to mount a fight after the Lyme
bacteria are gone. Doctors also note that a minority of patients has
lingering pain after many kinds of illnesses. But they say tests
usually don't find lingering or recurring bacteria, the only reason to
different trials have given Lyme patients with lingering pain months of
IVs and pills, either antibiotics or a placebo. One trial found
markedly less fatigue in patients using antibiotics, but researchers
concluded that didn't outweigh the treatment risks. In the other trial,
roughly half the patients in each group improved, suggesting that time
or a placebo effect is helping patients, not the drugs.
of long-term antibiotic use argue that these trials enrolled the wrong
patients or used the wrong treatments. But they have not come up with
equally strong trials proving the benefits of long-term IV antibiotics.
But some purveyors have come up with other untested and potentially
harmful "cures," including high doses of salt and vitamins, bee stings
and removing dental fillings.
the last three years, there's been more misinformation out there.
There's an acceleration of scams and highly questionable treatments,"
Stanley said. "You have all these people preying on Lyme patients."
recent years, Lyme-literate groups have sought laws that make it easier
to diagnose and treat chronic Lyme disease. Rhode Island, for instance,
made insurers pay for long-term antibiotic treatment and prevented its
licensing board from disciplining doctors for prescribing those drugs.
Similar bills have been proposed in New York. California's Senate
passed a nonbinding resolution that said all health care workers should
read guidelines written by the Lyme-literate group.
kind of a strange phenomenon, isn't it?" said Townes. "Can you think of
an instance where a specific disease treatment is being mandated by a
legislature instead of the scientific community?"
two Lyme bills pending in the U.S. House of Representatives offer what
some say is needed most: money for more research. The similar bills
would channel $50 million to $100 million to Lyme research over five
years, with an eye toward estimating the ailment's real prevalence,
improving prevention and developing a test that might calm the Lyme
we get a test that's going to be a gold standard" the controversy will
continue, Lane said.
Copyright since 2000