Bitten
by the
controversy bug
A debate grows on the threat of the insect-spread Lyme disease along
with the number of cases nationwide
Wednesday, July 20, 2005
ANDY DWORKIN
The Oregonian
It
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.
But
it took the
Battle Ground, Wash., man just minutes to enter a medical
melee -- the increasingly fierce and political
debate over Lyme
disease.
In
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.
"That's
when
it
all sunk in," Perez-Lizano said. "It was me that diagnosed
myself."
Doctors
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.
Perez-Lizano
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.
***
Perez-Lizano's
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.
"It's
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."
One
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.
With
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.
The
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.
***
***
Lyme
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.
That
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 rarely
life-threatening.
The
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.
So
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.
"It's
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."
Even
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,
Lane said.
"It
won't be
in
the thousands, like some states in the Northeast," he
said. "It'll be in the hundreds."
***
Lyme is an
illness tuned for controversy. Symptoms can be subtle
or shifting, mimicking other diseases and delaying
diagnosis.
Three
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.
"The
problem,"
said Dr. John Townes, an Oregon Health & Science
University infectious disease expert, "is that the initial
symptoms can
be silent."
If
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.
If
the
bacteria
survive, a "late disseminated" disease stage could begin,
often marked by arthritis and sometimes nerve
problems, fatigue and
personality
changes.
Finding
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.
The
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
disease.
Frustrated,
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 have it.
With
imperfect
tests, several Northwest residents told a similar tale
of being diagnosed with Lyme.
Oregon
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.
"Most
of the
people, by the time they call the Lyme network, have been
diagnosed with about four major illnesses,"
said Denham.
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.
"Patients
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.
Some
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.
"Oregon
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."
But
several
Oregon infectious disease experts said there is a good reason
the disease is rarely diagnosed here: Few
people have it.
What
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.
"I
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."
Gilbert
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.
Candida
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."
Lyme
is an
attractive explanation for mysterious ailments, Townes said,
because "people want to have something they
can treat with an
antibiotic."
***
***
Those
bacteria-killing drugs are the Lyme Wars' second front.
"There
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."
Standard
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.
"For
those
people we don't really have good treatment," Townes said.
"And this is where one of the controversies arises."
The
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.
"You
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.
But
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.
Mainstream
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 give antibiotics.
Two
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.
Advocates
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.
"In
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."
In
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.
"It's
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?"
Meanwhile,
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 Wars.
"Until
we get
a
test that's going to be a gold standard" the controversy
will continue, Lane said.
©2005
The Oregonian
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