Table of Contents:
ANNOUNCEMENT: NJ LD Coalition Trenton Rally
BOSTON GLOBE: Lyme Disease Victim [Evan White] Asks Panel for Help
NEW YORK TIMES: Lyme Disease: Does It Really Linger?
* Lyme Disease Electronic Mail Network *
* LymeNet Newsletter *
Volume 1 - Number 21 - 9/09/93
III. News from the Wires
IV. Jargon Index
V. How to Subscribe, Contribute and Get Back Issues
I. ***** INTRODUCTION *****
This issue of the newsletter contains two long news stories and an important
announcement. The first news story recounts the events at the Senate
hearing on LD last month. The second story brings to light the controversy
on persistent infection.
The announcement focuses on the insurance bill in the New Jersey Assembly.
II. ***** ANNOUNCEMENTS *****
FROM: The Lyme Disease Coalition of New Jersey
SUBJECT: Trenton Rally
The NJ Lyme Committee, a group that has formed to support Lyme patients,
announces that is holding a rally at the State House in Trenton, 10:30 am,
Thursday, September 23.
The purpose of the rally is to focus attention on S-1297/A-2553, the bills
which require insurance companies to pay for physician-recommended treatment
of Lyme disease. Currently, many companies are cutting off payment for Lyme
Although the Senate has passed its version of the bill, S-1297, the Assembly
Insurance Committee has not even released the Assembly's companion bill,
A-2553. Therefore, it cannot be considered for an Assembly vote. Both the
Senate and Assembly must pass a bill for it to be sent to the governor to
be signed into law.
It is imperative that we force the assembly to recognize the plight of Lyme
victims who not only have to battle the disease, but also must fight to get
appropriate treatment and adequate treatment compensation.
Since insurance companies expend large sums of money lobbying against bills
perceived to be detrimental to their profit margins, Lyme victims must
provide sheer numbers to lobby for passage of A-2553.
The Lyme Disease Coalition of New Jersey and VOICE, Victims of Insurance
Company Exploitation, support this rally.
Questions? Call: Gretchen Selbert (609) 751-1355
Pat Smith (908) 938-4834
Sallie Timpone (201) 288-5249
III. ***** NEWS FROM THE WIRES ******
HEADLINE: Lyme disease victim asks panel for help
SOURCE: The Boston Globe
DATE: August 6, 1993, Friday, City Edition
SECTION: NATIONAL/FOREIGN; Pg. 14
BYLINE: By Joel P. Engardio, Contributing Reporter
A frail, 14-year-old boy whose body has been ravaged by Lyme Disease held
a Senate panel in sympathetic awe yesterday as he pleaded for help in finding a
Sen. Edward M. Kennedy, the committee chairman, and many others in the
hearing room appeared moved by Evan White of New York, who Kennedy described as
a "brave, young man."
White, weighing only 80 pounds and bound to a wheelchair, usually does not
have the strength to speak, and communicates to his mother with barely audible
words and hand gestures.
But when his mother, Ruchana White, offered to translate for her son, he
tried to push her away to speak on his own. He managed to whisper into the
microphone. His mother repeated his words.
"We can't think. We can't sleep. We need you," he said of victims of the
disease. We need everybody to work together to tell everybody how we feel."
Kennedy removed his glasses, wiped his eye, and after a pause, leaned forward
and spoke to the young witness.
"Of all the testimony today, those few words of yours will be the most
powerful," Kennedy said with a slight quaver in his voice. "You said it right.
I think the best way we can thank you is to make sure we do something about it
like you asked us."
Kennedy's Labor and Human Resources Committee was looking at the relatively
new and mysterious disease caused by bites from tiny deer ticks. First
discovered in Connecticut in 1976, Lyme Disease is highly concentrated in the
Northeast, although cases have been reported in 44 states. One of the "hot
spots" of the disease is Nantucket.
According to the Centers for Disease Control in Atlanta, more than 9,600
Lyme Disease cases were reported last year compared to about 500 in 1982. The
disease starts with flu-like symptoms and, if untreated, can progress to
conditions that affect the heart, nervous system and joints. Often, a slowly
expanding red rash will appear signaling a possible tick bite.
Some controversy has emerged over the treatment and diagnosis of Lyme
Disease, generating a few heated exchanges at the hearing. Many of the
victims complained they had trouble discovering the source of their strange
illness, and many doctors had dismissed their complaints as psychological
while they continued to suffer.
But Dr. Allen Steere, a professor at New England Medical Center in Boston,
told the panel Lyme Disease has become a "catch-all" diagnosis for difficult
to treat conditions. The chronic Lyme Disease many victims claim to have is
rare, Steere said, and the disease can be successfully treated early with 30
days of oral medication.
"Confusing Lyme Disease with other illnesses runs the risk of taking Lyme
Disease research efforts down the wrong track and wasting scarce resources,"
Shouts of "He's wrong, he's wrong!" came from the audience in protest to
Steere's words. Many wore green ribbons on their chest to symbolize
solidarity in fighting the disease.
"If the doctor really looked around and saw all the children like Evan, he
would know they are chronically and critically ill," Mrs. White said. "He
cannot minimalize it because the people are here to testify it is happening
and it is everywhere."
Steere said he did not mean to say people like Evan do not have a problem,
but that Lyme Disease misdiagnosis is common. He said in 17 years of Lyme
Disease research he has not seen a case like Evan's.
When Sen. Howard M. Metzenbaum, an Ohio Democrat, pointed out that Steere's
testimony contradicted what others had been saying, the crowd erupted in
"This testimony has been a clarion call. We ought to get off our butts and
do something about this," Metzenbaum told the audience, many of whom had the
disease or know someone who does. "We just owe it to you to try to find an
HEADLINE: Lyme Disease: Does It Really Linger?
SOURCE: The New York Times
DATE: August 24, 1993, Tuesday, Late Edition - Final
SECTION: Section C; Page 1; Column 1; Science Desk
BYLINE: By ELISABETH ROSENTHAL
FROM her bed at Northern Westchester Hospital Center, Vicki Logan begs to
differ with academic scientists who claim that there is no such thing as
chronic Lyme infection and that Lyme is cured with at most four weeks of
Since 1987, Ms. Logan has battled headaches, fevers, fatigue, progressive
paralysis, seizures, periods of dementia and memory loss so severe that she
remembers only the previous three weeks out of the last year. For much of
her illness doctors told her she could not possibly have Lyme disease and
prescribed no antibiotics.
Two years ago Dr. Kenneth Liegner, a Westchester internist, decided to buck
conventional wisdom and try giving her prolonged courses of antibiotics that
could kill the Lyme spirochete: She improved somewhat during each course of
the drugs, and relapsed when they were stopped. Dr. Liegner became convinced
that Ms. Logan had chronic active Lyme infection that could be controlled but
not cured through daily drug treatment.
Others, including consultants at the Mayo Clinic, disputed the diagnosis,
saying that after months of antibiotics, Ms. Logan -- if she ever had
Lyme -- had certainly been cured. But recently, Dr. Liegner was vindicated:
scientists at the Centers for Disease Control and Prevention in Atlanta found
the Lyme spirochete, Borrelia burgdorferi, swimming in a sample of Ms.
Logan's spinal fluid.
"My life prior to the last three weeks is a blank," Ms. Logan said in a
halting voice. "I've lost everything and I'll be going to a nursing home when
I get out of the hospital. If you think you have Lyme disease, you have to
pursue the diagnosis."
A handful of cases like Ms. Logan's are challenging conventional assumptions
about Lyme disease and igniting a fiery debate about the usual course of this
increasingly common infection: Are disastrous experiences with Lyme like hers
the rare exception or the rule?
Most people who are treated shortly after a tick bite tend to recover
uneventfully, but a small number go on to develop chronic symptoms which they
attribute to Lyme infection despite extensive antibiotic treatment. These
patients, who sometimes receive months of home intravenous treatments and
experience serious disability, account for the lion's share of the health care
dollars spent on the illness. They fill the growing number of Lyme support
And yet doctors are unsure which, if any, of them actually has active Lyme.
Many of the country's leading Lyme experts believe that the number is
microscopic. "I think persistent infection occurs but it is very, very rare,"
said Dr. John J. Halperin, professor of neurology at North Shore University
Hospital on Long Island. "There are a lot of people being labeled chronic
Lyme with very little evidence of it. They don't have Lyme and so they
won't respond to a zillion months of antibiotics." Some of the patients'
complaints -- generally fatigue, joint aches and cognitive problems -- may
be due to permanent tissue damage from Lyme sustained before antibiotic
treatment, Dr. Halperin said, or to some poorly defined immune reaction set
off by prior infection. He and many other doctors say they believe that
the majority never had Lyme at all.
On the other side are Dr. Liegner and other doctors who say their practices
are filled with Lyme patients who do not get better. They say academic
experts are so blinded by what they "know" that they cannot see the evidence
piling up in front of their eyes.
"I think that Lyme is an incurable disease in many patients -- there's no
question in my mind about that -- and I think that's being suppressed and
denied," Dr. Liegner said. "Cases like Vicki Logan's are not exceptions;
they reveal the problems with our current paradigm."
The resolution of this scientific question has tremendous implications for
patients and has spilled over into economics and politics as well.
Although some doctors prescribe long-term, high-dose intravenous antibiotics,
most do not. And many insurers refuse to pay for these long courses, which
cost over $100,000 annually, citing scientists who do not believe that
extended therapy is necessary. Politicians at both the state and Federal
levels, including the Labor and Human Resources Committee, are holding
hearings in part to address patients' complaints that the practice is unfair.
"I think the jury is still out on what chronic Lyme disease is and is not
and that has resulted in quite a controversy," said Dr. David Dennis, head of
the Lyme disease effort at the C.D.C.
Carl Brenner, a marine geologist who has been unable to work for two years
due to the neurologic effects of Lyme, said: "A lot of people aren't getting
better. I'm not sure if that's because of persistent infection or not -- I
happen to think it often is -- but I think it's disingenuous for experts to
say, you're done, you're cured. Sure, the evidence for persistent infection
is anecdotal, but if 100 people tell you that your fly is open, you look
New Diagnostic Tests
The debate will probably eventually be resolved by a number of exquisitely
sensitive new tests currently under development to detect the normally
hard-to-find spirochete by recognizing its DNA or the proteins on its
surface. In studies these probes have discerned traces of the organism in
some people who have suffered chronic symptoms but who were told they did not
have Lyme or that they had been successfully treated.
While patients' groups are quick to use such results as evidence that chronic
Lyme might well be common, the doctors who developed them are a good deal
more cautious. They say that the new tests, which are still experimental, are
in some cases prone to contamination and in any case may be detecting the
remnants of organisms that have already been killed by therapy.
"Clearly this is a research tool which still has to be validated," said Dr.
Patricia Coyle, a neurologist at that State University of New York at Stony
Brook who has developed a test that detects one of the Lyme organism's
proteins. "But we think we are legitimately finding the spirochete in some
cases, and we do clearly find it in some patients who say they are having
persistent problems. And I do think that means they have viable organisms."
Doctors have long described a subset of Lyme patients whose symptoms are
only partly resolved with treatment and another group of patients who seem to
get better when on antibiotics but relapse after the medicine is stopped. In
a study by Dr. Robert Steere, director of rheumatology and immunology at
Tufts-New England Medical Center in Boston, one-third of patients complained
of symptoms after treatment.
Scientists have been unsure what to make of these complaints. Dr. Steere,
who identified Lyme disease 15 years ago, does not believe they result from
longstanding or relapsing infections. But some prominent researchers have
come to believe that at least a few patients with lingering symptoms indeed
still harbor the bacterium.
"The issue of post-infectious syndrome is very difficult and I suspect it is
a mixed bag," said Dr. Coyle. "Some are due to an immune or inflammatory
reactions. But I do think that some are due to persistent infection. I
certainly think that relapsing Lyme can happen."
Clues to Prolonged Infection
The Lyme organism is extremely difficult to culture, particularly when the
disease is advanced, so doctors are left relying on indirect and imperfect
tests to determine if a patient with continuing symptoms is infected. The
current Lyme test detects the patient's immune response to the parasite and is
prone to false readings. In most cases it is impossible to say with certainty
that a patient harbors the bacterium. Even among patients whom all doctors
would agree have Lyme infection of the central nervous system -- who have a
known tick bite, a typical Lyme rash and test positive on all current tests
-- only 10 percent have spinal fluid samples in which scientists can find
"In most infectious diseases, you don't diagnose until you identify the
organism -- which is the sine qua non -- anything else is inferior," said Dr.
Mark Klempner, a Lyme expert at Tufts-New England Medical Center. "But in
many cases of Lyme we're stuck. We can't find the bacterium. Until we have
a better diagnostic test that actually finds or measures multiplying
bacterium, we're going to have problems knowing which if any of these
patients have an ongoing infection and who might benefit from treatment."
Labs working on the new DNA and antigen tests to detect the parasite itself
have been deluged with fluid samples from patients with late-stage symptoms
but no clear lab results. In some of these cases the tests have come up
Scientists are just beginning to understand how, despite treatment, either
lingering immune reactions or prolonged infection might occur. Dr. David
Nelson and his colleagues at the University of Rhode Island have recently
reported that the Lyme spirochete contains a certain type of protein,
called HSP60, that is so structurally similar to a protein in human cells
that some patients' immune systems can not readily distinguish between the
two. When the immune system attempts to identify and destroy the Lyme
spirochete, it inadvertently destroys human tissue as well.
Scientists suspect that genetic factors that govern the immune response may
explain why some patients with Lyme recover uneventfully without treatment,
and others are disabled for life despite antibiotics.
Researchers have come to believe that chronic Lyme may be difficult to detect
and treat because it is caused by a very few free floating organisms that
are confined to the joint spaces and central nervous system -- sites that
many antibiotics do not reach. Recent work in Dr. Klemper's lab has shown
that the spirochete may well spend at least part of its life cycle inside
cells, where they are similarly protected.
Concerns About Profiteering
Unfortunately, scientific advances have not clarified whether the small
number of well-documented cases of chronic Lyme represent anomalies or the
tip of a huge iceberg.
Dr. Dennis said: "Is there evidence of persisting infection despite
antibiotics? Yes, there are a few case reports. But when you look into it,
some didn't have adequate treatment, and there are things about some of
these people that make you think they don't have a normal host immune
reaction. And like anything in medicine, there are a few outliers."
But Carol Stolow, who runs the Lyme Disease Network of New Jersey, says her
hotline is "ringing off the hook" with calls from desperate people with
chronic Lyme who are battling insurers and having trouble finding doctors
who will prescribe antibiotics. "Until you completely understand this
spirochete, don't tell me you know it can be cured in four weeks," said
Mrs. Stolow, who has three children who have been treated for chronic Lyme.
There are similarly loud disagreements about how often people who test
negative on the standard Lyme antibody tests can nonetheless have Lyme
disease. It was because Ms. Logan initially tested negative on this test
that she went untreated for years. The newer lab methods have proved that
this is possible, but no one is sure how common it is.
Dr. Halperin, whose own lab has uncovered a few such cases using a genetic
technique, takes issue with the spin that Lyme activists put on his results.
"We all feel that this is very rare, but getting the statistic is like
trying to estimate the number of angels on the head of the pin," he said.
He and others worry that while a few people may have chronic Lyme disease,
thousands more are being treated for the condition with high -- sometimes
dangerously high -- doses of antibiotics.
"I'm concerned that there are people who are marketing very long courses of
antibiotics to treat Lyme without a good prospective study, and I am very
concerned about profiteering," said Dr. Klempner.
Hoffmann-Roche Inc., the maker of ceftriaxone, an intravenous drug marketed
as Rocephin that is commonly used to treat advanced Lyme, has underwritten
teaching videos about Lyme disease featuring doctors who believe in extended
treatment. Many of the patient support groups and "grass roots" information
networks rely on these companies to underwrite their phones, their faxes,
their 800 numbers. On the other hand, some of the doctors who advocate only
limited treatment have become paid consultants to insurers.
With the diagnosis of late Lyme generally uncertain, authorities caution
that doctors must be rigorous in attempting to prove their case. Dr. Liegner
sends specimens to labs all over the country in an effort to properly
diagnose his patients. But Dr. Coyle laments that many patients referred
to her carrying the diagnosis of chronic Lyme of the central nervous system
have had inadequate testing, lacking even spinal taps. She said: "This is a
terrible area and people are being treated with prolonged courses of
antibiotics without any attempt to find out what's going on."
IV. ***** JARGON INDEX *****
Bb - Borrelia burgdorferi - The scientific name for the LD bacterium.
CDC - Centers for Disease Control - Federal agency in charge of tracking
diseases and programs to prevent them.
CNS - Central Nervous System.
ELISA - Enzyme-linked Immunosorbent Assays - Common antibody test
EM - Erythema Migrans - The name of the "bull's eye" rash that appears in
~60% of the patients early in the infection.
IFA - Indirect Fluorescent Antibody - Common antibody test.
LD - Common abbreviation for Lyme Disease.
NIH - National Institutes of Health - Federal agency that conducts medical
research and issues grants to research interests.
PCR - Polymerase Chain Reaction - A new test that detects the DNA sequence
of the microbe in question. Currently being tested for use in
detecting LD, TB, and AIDS.
Spirochete - The LD bacterium. It's given this name due to it's spiral
Western Blot - A more precise antibody test.
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