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No Warranties or Representations
The data and information presented in this web site are presented in good faith and believed to be accurate regarding Lyme disease (commonly misspelled lymes disease lyme's disease lime disease limes disease) and other related diseases. Any and all liability for the content or any omissions including any inaccuracies, errors, or misstatements in such data or information is expressly disclaimed. The web site is compiled for the sole purpose of informing community members of resources and information pertaining to Lyme Borreliosis Disease and its coinfections. Lyme disease symptoms may vary from person to person.
The Canadian Lyme Disease Foundation, Directors and members are not liable for any direct or indirect damages or any damages whatsoever resulting from loss of use, data or profits, whether in an action of contract, negligence or other tortious action arising out of or in connection with the use or performance of information available from this website.
Consult a qualified Lyme ( Borreliosis ) Disease literate doctor for medical advice if Lyme Disease is suspect.
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Bitten by the controversy bug
The Oregonian
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.
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