Bergon Record Lyme Article

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From the Bergen Record online:

Too much or too little?

Monday, May 1, 2000

By JULIE FIELDS

Staff Writer

At first, Ruth Genne chalked up her fatigue,

headaches, and joint pain to jogging and the

demands of new motherhood. But then her aches grew worse, her legs began to

tingle, and areas of her face started to burn.

Five years after the onset of Genne's bewildering symptoms, her daughter

, then 3,

developed a bull's-eye rash, a telltale symptom of Lyme disease. So Genne

insisted on being tested.

Sure enough, she was infected with Lyme, too.

But that diagnosis in 1990 was hardly the end of the Flemington woman's

troubles. Doctors disagreed

over how long she should take antibiotics, and later, whether the drugs had

cured her. When her fevers

and headaches persisted, a neurologist attributed her problems to stress.

" I was just getting sicker and sicker, and no one was believing me, " Genne,

48, recalled. " They wrote me off as nuts. "

More than two decades after Lyme disease was

first recognized in Connecticut, the country's leading tick-borne illness

remains the focus of a fierce

debate over diagnosis and treatment.

On one side are patient activists and some

physicians who say chronic or recurring Lyme is largely underrecognized and

undertreated. Such

cases, they say, demand aggressive use of powerful antibiotics for months or

even years.

On the other side are leading researchers who

contend just the opposite is true -- that Lyme disease is overdiagnosed and

overtreated,

preventing patients from getting the care they need and raising the risk of

drug-resistant bacteria.

Now, for the first time, the federal government is sponsoring a double-blind,

placebo-controlled study to help resolve one question at the heart of the

dispute: Do repeated courses of antibiotics really help Lyme victims

suffering from memory loss,

palsy, and other neurologic symptoms?

The four-year, $4.8 million investigation at

Columbia University will enroll 60 patients randomly assigned to receive

antibiotics intravenously for 10 weeks, or a placebo IV. Those given the

placebo

will have the option of taking six weeks of

antibiotics after the study.

Genne, who lives in the epicenter for Lyme disease in New Jersey, Hunterdon

County, was one of the

first patients to enroll. " I have an interest in helping this disease to be

taken more seriously than it is, "

she said. " I think it's really devastating New Jersey. "

Genne has another motivation, too. Although

, now 13, was treated for Lyme and is now symptom-free, Genne's

other daughter, 10-year-old , had difficulty tolerating antibiotics.

, who has had the disease since she was a year old, still suffers from

symptoms, including joint pain, that last year forced her to miss many days

of school.

The study, funded by the National Institutes of Health, grew out of a

recognition that while four or five weeks of treatment may work for the

majority of people infected with Lyme, some individuals

aren't diagnosed right away, or simply don't get well.

In addition to testing the effectiveness of a longer course of antibiotics,

the NIH hopes the study will shed light on whether patients such as Genne

suffer from active or recurring infection, or some type of residual,

irreversible damage caused by the earlier infection, said Al Kerza-Kwiatecki,

an

infectious-disease expert with the NIH's National Institute of Neurological

Disorders and Stroke.

Dr. Fallon, the study's principal investigator and a psychiatrist at

Columbia University, expects the IV antibiotic to help some, but not all, of

the patients who receive it. Still, in studying who gets better and who

doesn't, researchers hope to

decipher clues that could guide doctors making decisions about treatment in

the future.

Fallon and other researchers also plan to use

sophisticated brain-imaging tools to learn more about the disease's puzzling

effects on the brain, which can include dizziness, memory loss, poor

attention span, depression, and " fuzzy " thinking.

Employing PET and MRI scans, scientists will

measure blood flow and the metabolism of nerve cells in the brain. They hope

to learn whether the Lyme bacterium, Borrelia burgdorferi, causes blood

vessels in the brain to become inflamed. Or whether the bacteria attack nerve

cells directly.

A secondary mission will be to study a protein in the brain as a possible

marker for Lyme disease, an

effort that could prove useful in devising a better lab test.

Even researchers from the doubting side of the scientific divide see merit in

the study. " It's just one study, obviously. And it'll need to be

corroborated, "

said Dr. Leonard H. Sigal, a rheumatologist who directs the Lyme Disease

Center at

UMDNJ- Wood Medical School in

New Brunswick. " But if the study shows that people get better with

antibiotics, then that should influence our treatment. "

Yet Sigal, who has been vilified by some patients' groups for testifying on

behalf of insurance

companies in disputes over payment for therapy, downplays the importance of a

more reliable test for the disease.

" What it comes down to is clinicians doing a history and physical evaluation

and not rushing to make

judgments, " he said.

" There are physicians who make a diagnosis of Lyme disease that's incorrect

for the best of

reasons, " added Sigal. " There are others who are locked into the diagnosis of

Lyme disease to explain almost everything that comes into their office. "

Such criticism rankles physicians who treat large numbers of Lyme patients.

Yet their work is largely based on an accumulation of experience in treating

Lyme, rather than rigorous experiments conducted

in the lab. And in the absence of hard, scientific data to support their

decisions, many feel vulnerable to scrutiny and even accusations of

malpractice from insurance companies and state medical boards.

Fallon, who heads Columbia's Lyme Disease

Research Program, said he's not surprised by their skittishness.

" I think there's a sizable amount of oppression of these doctors, " he said.

" I feel fortunate that I'm a psychiatrist and not an internist. Because if I

were, I'd probably be treating with the antibiotics, and I would be under an

intense challenge by my

colleagues who don't believe chronic Lyme disease exists. "

* * *

Anyone interested in more information about the Lyme disease study at

Columbia University should

call (212) 543-5367.

To be eligible for the study, patients must:

Be between the ages of 18 and 60.

Have a well-documented history of Lyme disease with a currently positive

result on one of the two tests used in confirming a diagnosis of the disease.

Reside in New Jersey, New York, or Connecticut.

Experience ongoing problems with their memory

and other cognitive problems.

Have undergone at least four months of antibiotic treatment.

Have no allergies to ceftriaxone, which is marketed under the brand name

Rocephin.

Too much or too little?

http://www.bergen.com/healthw/lyme01200005011.htm

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