A Rift Over Lyme Disease - NY (Newsday 5-22-07)

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A RIFT OVER LYME DISEASE

Experts are split over diagnosis and treatment of the tick-borne illness

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May 22, 2007

Kim Yastrzemski has been on and off intraveneous and oral antibiotics for

close to eight years - one of thousands of people diagnosed with and treated

for a chronic and persistent infection known as Lyme disease.

She doesn't remember an actual tick bite or classic bull's-eye rash, but her

doctors found evidence that the common Borrelia bacteria have been in her

body. Time and again, antibody tests to diagnose Lyme disease came back

positive.

But this pesky bacterial bug - and the test used to diagnose exposure to it

- have been at the heart of a raging controversy on the very definition of

Lyme disease. Mainstream infectious disease experts argue that there is no

evidence that Lyme borreliosis (infection) remains in the body after a few

weeks

to a month of antibiotic treatment. These doctors are not doubting that

patients like Yastrzemski are suffering from real and persistent symptoms -

from

headaches to sheer exhaustion - but they question the trigger for these

problems, and worry about the ongoing exposure to antibiotics.

On the other side, some maverick doctors have built thriving practices on

the back of the bacterium, diagnosing Lyme for a laundry list of unexplained

symptoms and a Lyme antibody test that picks up whether a person has ever been

exposed to it. The antibody test is not a marker for active infection.

" There are a lot of people who think they have Lyme disease but don't, " said

Dr. Dattwyler, an infectious disease expert who once studied Lyme

disease at University Hospital in Stony Brook and has since moved to New York

Medical College in Valhalla. " We are not serving these people well. We have no

definition for chronic Lyme disease or [know] that there are any effective

treatments for these patients' ongoing symptoms. "

Long-term questions

Dattwyler and other infectious disease doctors who treat Lyme disease argue

that a minority of doctors have made it their business to diagnose and treat

ongoing symptoms as a chronic Lyme infection while the real triggers for

these symptoms can be ignored or missed.

Dattwyler said the government has thrown a lot of research money at studying

persistent infection associated with Lyme disease, but the bacteria just

aren't there after the acute infection is treated. In one multi-center study,

led by Dr. Mark Klempner of Boston University School of Medicine, 129 patients

with well-documented Lyme disease who were acutely treated but complained of

lingering symptoms were split up to receive three months of either

antibiotics or a placebo.

'No evidence of bacteria'

At several points during treatment and months later, patients were asked how

they felt. The equation was always the same, no matter when they were asked:

A third felt better, a third felt worse and the others said they felt no

change. Kempner said he and his colleagues took samples of spinal fluid, blood

and urine, searching for evidence of active infection.

" Over 750 lab exams, " Klempner said. " And not a single person at any point

in the study had evidence of the bacteria. "

" They are suffering from something, but it isn't a persistent infection, "

Dattwyler said of the unexplained neurological and physical problems. And it is

this very fact, he said, that makes them vulnerable to the " Lyme " diagnosis.

" Modern medicine doesn't address their needs well. "

Despite this growing skepticism over the chronic Lyme diagnosis, a very

powerful Lyme network continues to grow - organizations run by patients and

their

families to raise awareness and money for research to solve the puzzle of

these chronic symptoms.

Earlier this month, scientists at Columbia University Medical School

announced the opening of the Lyme and Tick-Borne Diseases Research Center,

established with a $3-million gift from two of these organizations, Time for

Lyme and

the Lyme Disease Association.

Heading the new institute is Dr. Fallon, a scientist who says that he

wants to address the controversy head-on and develop a test that will

identify active infection.

Back in the late 1990s, Fallon was awarded $5 million in federal grants to

conduct a long-term antibiotic study and collect brain scans from these

patients. The study, finished two years ago, is under review by a major

scientific

journal, Fallon said. Now he's hoping to unravel the mysteries of chronic

Lyme by bringing experts from all walks of science into the fray.

More studies needed

" There has been very little done on chronic Lyme disease, " he said earlier

this month at a conference sponsored by Columbia. " Mothers are powerful

people, " he said, pointing to the women who started the organizations after

their

children were diagnosed with chronic Lyme infections.

Fallon, an associate professor of clinical psychiatry at Columbia, said that

in the study the antibiotics worked initially on reducing pain, fatigue and

mental fog, but six months later patients were no better than those who did

not receive long-term therapy.

" I would have loved for it to work out, but it didn't, " Fallon said. He said

he did find evidence of an abnormal circuitry on the brain scans of some of

those with chronic Lyme disease, and the abnormality did not change with the

antibiotic treatment.

" It's uncertain whether it is a low-grade chronic infection or a

post-infection syndrome, " he said. " But the patient community is sick, and for

a long

time it wasn't acknowleged. "

Antibiotics for initial therapy

The latest treatment guidelines for the initial exposure to the Lyme bug

call for a traditional course of antibiotics but warn against their long-term

use. Many doctors are also giving a single dose of an antibiotic for certain

people who are bitten by ticks but don't show symptoms in highly endemic Lyme

regions, including Long Island and Connecticut, Dattwyler said.

Organizations like Time for Lyme have referred to these guidelines as

" repressive. " In a news release issued last month, the group's founder and

co-president, Debbie Sicillano, said: " At a time when Lyme and other tick-borne

illnesses are becoming more prevalent ... some treatment guidelines are

marginalizing our efforts to understand, diagnose, treat and cure this

disease. "

Datwyller and others say these parent-run organizations believe the chronic

symptoms are a sign of untreated bacterial infection and have sided themselves

with

those doctors who provide long-term antibiotic treatment.

The Time for Lyme group's Web site states: " If you have been suffering

symptoms consistent with those on the attached list, but have been told that

your

blood tests are negative, do not be deterred from seeking further diagnosis.

Be armed with knowledge and trust your instincts. You may be one of the

thousands who have Lyme disease but have been misdiagnosed. "

For their part, infectious disease doctors worry that people with all sorts

of unexplained symptoms are being routed to Lyme doctors who will treat with

long-term antibiotics - despite studies that suggest those treatments don't

work. (Stony Brook neurologist Dr. Krupp and her colleagues also did a

monthlong study and found no difference between those receiving antibiotics

and those getting a placebo. The results of the study were published in 2003.)

" The potential for harm is enormous, " Boston University's Klempner said.

" Patients have died, and others have had infections " because of the intravenous

lines used in many patients to deliver antibiotics. He also worries about

treatment-resistant organisms that develop when antibiotics are overused.

Focus may miss other problems

What's more, doctors say that attention to Lyme can lead to missed diagnoses

of other problems. Dr. Sunil Sood, chief of infectious diseases at Schneider

Children's Hospital, part of North Shore University Health System, said that

he has seen children with undiagnosed brain tumors and juvenile arthritis

who were thought to have Lyme.

Dr. Larry Zemel, chief of rheumatology at Connecticut Children's Medical

Center in Hartford, agrees. " I have documented case after case of children with

arthritis, even leukemia, who were being treated for Lyme disease -

mistakenly. "

There are lawsuits on both sides of the controversy: chronic patients suing

for rights to prolonged antibiotic treatment, and claims that a now-withdrawn

Lyme vaccine triggered chronic Lyme; and Lyme doctors accused of taking

advantage of and mistreating patients through dangerous doses of antibiotics.

Symptoms that won't go away

Yastrzemski, 55, who lives in Water Mill, has not paid much attention to the

controversy surrounding her diagnosis. She has spent years in pain, with a

long list of constant neurological and physical problems. And after months and

months of antibiotic therapy at various points over her 8-year odyssey, she

still has symptoms that won't go away.

" I have been more clear-headed in recent weeks, " she said of her mental

state. " But I am in pain every day. " She continues to see a variety of doctors

every few weeks. Her last course of antibiotics was in 2005.

" It's a real juggling act to figure out what this is, " Yastrzemski said. She

was part of another brain scan study being conducted by Fallon's center. She

said it showed an abnormal blood-flow pattern. Every time she's treated, she

hopes it will be the last of her symptoms. But, she said, " it never is. "

SYMPTOMS, TREATMENT, COMPLICATIONS, PRECAUTIONS

Borrelia burgdorferi is the spiral-shaped bacterium that causes Lyme

disease. Ticks infected with this bug feed off mice, other small rodents and

deer

and can transmit the disease to humans.

The infection doesn't take hold right away, and experts say removing the

tick soon after it is discovered is the best prevention. The tick needs to feed

for two days to transmit the bacterium, according to Dr. Dattwyler,

professor of medicine and microbiology at New York Medical College.

The first sign is a round red rash that spreads in size around the bite.

Fever, a stiff neck and flulike aches and pains, fatigue and headaches can

follow.

Treatment with antibiotics is key to killing the bacterium and not allowing

it to take hold in the body. Infectious disease experts have written

guidelines that state that two to four weeks of antibiotics is standard. Many

doctors

are now recommending a preventive dose of antibiotic right after a bite, as

well as removal of the tick, Dattwyler said.

Without treatment, the infection can lead to arthritis, with the classic

painful and inflamed joints. Treatment at this stage is critical, as 10 percent

of untreated Lyme patients may end up with chronic arthritis.

The Lyme bacterium can also travel into the central nervous system if not

treated immediately. And this can trigger Lyme meningitis (stiff neck and

pounding headaches) and Bell's palsy (temporary paralysis of the facial

muscles).

These symptoms can develop a few months after the untreated bite. Rarely,

untreated Lyme can cause heart problems.

There is no widely available commercial diagnostic test for the Lyme

bacterium. The test in use looks for antibodies, which are immune markers. That

means that your body waged an immune response, and the test does not put a time

element on that exposure. Antibodies are an indication that your immune system

has come in contact with Lyme at some point in your life. Without signs of

the classic rash, doctors can use other factors - time of year, exposure to

ticks and symptoms - to make a diagnosis.

Experts say that precautionary measures can be taken to avoid exposure to

the bacterium. With summer around the corner, wear protective clothing (socks,

long pants and long-sleeved shirts) when in wooded areas or in the grass

nearby. Wear light-colored clothing so ticks are easier to spot. (Spraying

clothing with the insecticide permethrin also helps keep ticks at bay.

Repellents

with DEET work, too, but beware of side effects and sensitivities to these

products.)

Dattwyler said that many people find it hard to comply with these

recommendations and advises that they examine their bodies, their children and

clothing

for ticks. Washing clothes in hot water also kills ticks.

According to the National Institute of Allergy and Infectious Diseases,

ticks that transmit Lyme can be as small as a poppy seed, so check clothing and

skin carefully. Check your pets for ticks, as well.

If you see a tick, use a tweezer to gently remove it. Don't squeeze its body

because that can inadvertantly inject the bacterium into the skin. Then, use

an antiseptic on the bite.

Most ticks do not transmit Lyme, but don't take chances. If a rash develops,

call your doctor immediately.

- Talan

Copyright 2007 Newsday Inc.

Coughlan, President

Massachusetts Lyme Disease Awareness Assoc.

Mashpee, MA

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