By MELISSA KLEIN
THE JOURNAL NEWS
(Original publication: May 13, 2001)

The tick that bit David Robbins unleashed an invisible invader,
infecting the White Plains resident with an illness that went undetected
for months.

"I never had a rash, I wasn't running a fever," said Robbins, a 37-year-
old consultant. "I had symptoms that could be related to Lyme disease or
related to everyday life stress."

Robbins said the {*filter*} test that pinpointed Lyme disease, conducted
during a routine physical, indicated he could have been infected a year
or more earlier. He does not remember when he was bit, and the only
indication that something was wrong were headaches and fatigue.

Why Lyme disease can linger for months in some people without revealing
itself is just one of the mysteries of the tick-borne illness that has
yet to be solved. In the 26 years since Lyme was first identified in
Connecticut and subsequently spread throughout the country, doctors
continue to be baffled by the power of the tiny deer tick.

Several research studies are now under way in the New York metropolitan
area that may shed light on some of the most confounding and
controversial aspects of the disease, including how best to treat people
whose symptoms do not go away.

Two studies are based in Westchester County, where 280 people contracted
Lyme disease last year, according to the state Health Department. In
Putnam County, 290 infections were reported and in Rockland County 70.

Robbins is participating in a study just beginning at the Westchester
Medical Center to determine if the Lyme organism, a corkscrew-shaped
bacteria known as Borrelia burgdorferi, can be located in the
{*filter*}stream of several groups of people, including those who have no or
few symptoms.

And Dr. Daniel Cameron, a Mount Kisco internist and epidemiologist, is
conducting a study to determine if a three-month course of antibiotic
pills is helpful for those who have previously been treated with
antibiotics, but are not well.

Another study at Columbia University will examine whether a 10-week
treatment with intravenous antibiotics will be effective in patients who
experience memory lapses and other cognitive problems that may be the
result of a chronic Lyme infection.

"The study that we're doing is important because it will help to answer
one of the polarizing questions in medicine right now," said Dr. Brian
Fallon, a Columbia University psychiatry professor and the study's lead
investigator. Fallon also is director of the Lyme Disease Research
Program based at the New York State Psychiatric Institute affiliated
with Columbia.

When Lyme disease is found early most people with Lyme have a telltale
red rash that signals the infection's presence the treatment is not in
dispute. Patients are typically given a short course of the antibiotic
doxycycline or amoxicillin.

"After 14 days, the majority of people will be back to their same old
self," said Dr. John Nowakowski, an infectious disease specialist at
Westchester Medical Center.

Still, for some people the symptoms do not go away. They experience
aches and pains, fatigue and memory problems. Some doctors believe those
complaints indicate a chronic Lyme infection and will treat patients
with antibiotics for months.

Others in the medical community think that the initial infection may
have caused another type of reaction in the body and that antibiotics
are useless.

One attempt to address the issue was a large study funded by the
National Institutes of Health, which looked at many aspects of lingering
Lyme symptoms including the success of repeated antibiotic therapy. The
study was conducted at New York Medical College in Valhalla, Yale
University in New Haven, Conn., and New England Medical Center in
Boston.

However, the treatment trial was stopped in November after findings
indicated no substantial difference in the responses of those who
received antibiotics, both intravenously and orally, and those who got a
placebo.

"I think our study would suggest that this is not due to ongoing
clinical infection and maybe we should not be going along that path to
figure out what's causing this," said Dr. Arthur Weinstein, an adjunct
professor at New York Medical College and one of the study's
investigators.

Weinstein would not release further details of the research pending
publication of the study this summer in the New England Journal of
Medicine.

The three-year study at Westchester Medical Center, which is funded with
a $300,000 grant from the U.S. Centers for Disease Control and
Prevention, is an attempt to see if the Lyme organism in those without
symptoms or whose symptoms are more serious than most may be a
different strain of bacteria. In Europe, for instance, strains of the
Lyme bacteria can case chronic skin rashes not seen in this country.

First, researchers must take a {*filter*} sample and be able grow the
bacteria in the laboratory, something that may not be possible.
Nowakowski, the study's lead investigator, said larger than normal {*filter*}
samples would be used to increase the chances of finding and culturing
the bacteria.

Anthony Devito, a 35-year-old civil engineer from Hastings-on-Hudson,
joined the study after enduring a puzzling array of symptoms since last
summer that included groin pain, nausea and insomnia. He was diagnosed
with Lyme only recently and is now being treated with antibiotics.

"I said do whatever you want," Devito said. "I was glad to do anything
to help anyone else avoid this horror."

Also eager to participate in a research study was Ellen Broderick, a 46-
year-old teacher from Pittsfield, Mass., who first contracted Lyme
disease four years ago and has been troubled by reinfection and ongoing
symptoms. She is participating in the antibiotic trial conducted by
Cameron.

"It's a very confusing and difficult disease," Broderick said. "I don't
look ill and I'm not a hypochondriac. If you just, out of the blue,
heard all of the symptoms that I have gone through, you'd think I was
crazy."

Cameron said he hopes to enroll 216 people in the trial, half who have
tested positive for Lyme disease and half who have not but have symptoms
of the illness. The patients will be randomly assigned to get three
months of amoxicillin or a placebo.

Cameron is funding the two-year study privately.

The $4.7 million Columbia University study is being financed by the
National Institutes of Health. Participants will be treated with four
weeks of therapy with the antibiotic Rocephin, then undergo brain
imaging and memory and attention tests to determine if they have
improvement in functioning.

The study began last year, but only 10 patients have signed up so far
because of strict enrollment criteria, Fallon said. Some of those
restrictions have been loosened in an attempt to get the 45 or so
patients needed.

Fallon said the study is based on preliminary information that a repeat
dose of intravenous antibiotics helps cognitive functioning in some
patients. But, he said, his study may end up backing the research
conducted by Weinstein.

"The truth is, that we don't know whether that is either the wrong
treatment or the best treatment," Fallon said.To participate in one of
the ongoing studies on Lyme disease, call the following numbers.
Criteria for enrollment varies with each study.

- Westchester Medical Center study to identify Lyme bacteria,
914-493-8865.

- Study by Dr. Daniel Cameron of Mount Kisco on the effectiveness of
antibiotic treatment in those already treated for Lyme, but who still
have symptoms, 914-666-4665.

- Columbia University study on the effectiveness of antibiotic treatment
for those with memory and other cognitive problems, who have already
been treated with intravenous antibiotics, 212-543-6508.

To learn more:

The monthly meeting of the Westchester Lyme Disease Support Group will
be held at 7:30 p.m. Tuesday at 85 Court St., White Plains. Dr. Charles
Ray Jones, a pediatric Lyme disease specialist from New Haven, Conn.,
will talk about Lyme disease in children. For information, call
914-591-7023.

To get treated:

The Lyme Disease Diagnostic Center at Westchester Medical Center will
hold walk-in hours on Tuesdays from 4:30 to 6:30 p.m. through the end of
May. During June, July and August, the center will be open from 4:30 to
6:30 p.m. on Mondays, Wednesdays and Thursdays. The center is in
Cedarwood Hall on the hospital's Valhalla campus. For information, call
914-493-8425.

Get involved, The Journal News, 13 May 01
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