My friend Robert and his wife spent their summer in the demoralizing
activity of second-guessing a doctor.
Some people make enjoyable careers of this practice, but most find it
infuriating and depressing, especially when their own health is involved. The
fact that, in the end, Robert and his wife turned out to be far better doctors
than their doctor has only made them feel worse.
Both of them are sensible and generally healthy, the kind of people who
know, as they enter their 50's, that they should find a regular doctor, but
haven't gotten around to it quite yet.
Then, at the end of June, Robert got a rash.
They had never seen anything like it before � a smooth dark pink patch that
started out in the groin and within a couple of days had spread down the
inside of Robert's left thigh. It didn't itch and didn't hurt. If anything,
the area felt numb.
After watching the patch get bigger and redder and angrier for a few days,
Robert's wife decided something had to be done. Visions of flesh-eating strep
and blood poisoning flashed through her mind. Robert, who was gardening and
running four miles a day, felt his imminent demise was unlikely, but he was
also a little worried.
It was a Saturday and the local medical offices were closed. They opened
the phone book and found a practice in the next town that could see Robert in
45 minutes.
"Instantly upon seeing the rash, the doctor said it was jock itch," Robert
said. It made perfect sense. "Hey, what am I if not a jock?" he said.
He left the office with a prescription for antifungal pills and cream, an
appointment for a routine physical the following week, and the small, happy
glow of having efficiently dealt with all his medical needs for years to come
� and on a Saturday, too.
The glow was short-lived. His physical yielded not the clean bill of health
he had expected, but different news. His blood showed highly abnormal liver
enzyme levels, the doctor said. He should see a hematologist right away. A
name and phone number were provided.
"Hematologist?" Robert's wife said that night. "Isn't that blood? Isn't
liver something else?"
And so it began. The next day Robert's wife began to ask around.
Hematologist was indeed blood. She looked up the antifungal pills Robert was
taking in a reference book. Abnormal liver enzymes were listed as a possible
side effect. Wouldn't it make more sense to recheck Robert's blood after the
medication was out of his system, before getting involved with a specialist?
They never made the appointment. Instead, an anxious month later, Robert
got another set of blood tests. His liver tests were back to normal. His rash
had, meanwhile, melted away.
But the family's relief did not last long.
Within a few days Robert really did start to feel really sick. His neck
hurt. His shoulders hurt. His collar bones hurt. His jaws hurt. He could
barely chew. One of his legs began to feel strange.
Now they were really worried. Maybe he should have seen that specialist
after all.
Cowed, Robert made another appointment with the doctor. After a quick exam,
he was told he probably had a virus.
Could it be Lyme disease, Robert wondered aloud, suddenly remembering long
sessions out pruning the shrubbery in a pair of skimpy running shorts.
Unlikely, he was told. Not at all typical. But we'll test you if you want.
Robert's test for Lyme disease was unequivocally positive.
Even so, it was a full two weeks later, with Labor Day over and his
symptoms slowly subsiding on antibiotics, that his wife looked at him over the
kitchen table and gasped. She suddenly knew what that long-vanished rash had
really been.
Robert had had Lyme disease all along, from the rash of early infection to
the joint pains and fatigue of established disease. And the whole thing could
have been avoided if the doctor who was open on Saturdays had taken a moment
to think.
A medical educator would have a field day analyzing this tale of missed
signals, in which a board-certified practitioner � who, incidentally, did all
his postgraduate training in parts of the East Coast crawling with Lyme � made
every mistake in the book. He overtested, and undertested, overtreated and
undertreated, and never bothered to slow down, read the chart, and think.
The moral of this story, the educator might conclude, is that we
desperately need better medical schools. A patient advocate might say it
argues instead for constant consumer vigilance; a Lyme activist would urge
more Lyme awareness; a policy analyst more accessible urgent care.
Robert and his wife second all these proposals, though they are now little
weary of the whole thing. They don't want to be their own doctors, train their
own doctors or keep a constant wary eye on their doctors. They just want one
who can think.
To Whom It May Concern;
On Christmas Eve of 1993 one of our sons drove home from an 11:00 P. M.
church service. When we got to the side door of our home, he said, "Someone
else will have to put the car away, I'm too dizzy". We live in Ohio and do not
know when he became infected with Lyme Disease. It is obvious that he was not
camping or hiking during that part of our year. He remembers that he had been
camping at Mammoth Cave two summers before the first symptoms and that one of
his feet started peeling after that. He feels that an infected tick may have
infected him then. He may also have become infected when on an Inn-to-Inn
bicycle vacation or on a young people's weekend retreat. Both of these
occurred in Wisconsin the fall prior to his first indications of a problem.
Our son was diagnosed with Lyme at a clinic in Wisconsin a few months
later. They treated him for 21 days with an intravenous antibiotic. At the end
of that time he asked, "What do we do now?" They said there was nothing more
to do and that he was cured of his Lyme Disease.
Within two months our son had regressed to his worst condition and the
clinic would not examine him further. They claimed his problems had to be the
result of something other than Lyme Disease. They told him to see his own
doctors. He eventually learned of another doctor who was willing to take his
case and had an excellent reputation for effectively treating Lyme patients.
For eighteen months he flew to see this doctor who realized that each case of
Lyme disease has to be treated individually. What works with one patient may
not work for another.
We are distressed that a groups of doctors have tunnel vision and are so
conceited that they feel it is my way or no way. If our son had had early
signs of what his problem was, short-term use of oral or intravenous
antibiotics would have cured him. That was not the case and long-term
intravenous treatment was required. He has been symptom free now for over
three years.
Sincerely yours, People with chronic Lyme disease report significant physical and cognitive
problems related to their illness, yet many questions remain about the
cause(s) and treatment of long-term symptoms. To help answer those questions,
the National Institute of Allergy and Infectious Diseases (NIAID), awarded a
five-year contract to the New England Medical Center (principal investigator,
Mark S. Klempner, M.D. and co-investigator Linden T. Hu, M.D.), New York
Medical College (co-investigator Arthur Weinstein, M.D.) and Yale University
(co-investigator Janine Evans, M.D.) to study how chronic Lyme disease
develops and how to improve its treatment.
On November 14, the Data and Safety Monitoring Board (DSMB), an independent
monitoring group of doctors and researchers from around the country, reviewed
a planned interim analysis of data from two placebo-controlled drug trials
under this contract. The trials were testing the safety and efficacy of
intensive antibiotic treatment in people with Lyme disease who had developed
chronic symptoms despite earlier treatment with antibiotics. The study
compared treatment with 30 days of intravenous ceftriaxone followed by 60 days
of oral doxycycline to treatment with intravenous placebo followed by oral
placebo for the same duration. Both trials enrolled patients with a
well-documented history of prior Lyme disease and used the same drug regimen.
However, one trial enrolled only patients who had antibodies to the Lyme
disease bacterium at the time of enrollment, whereas the other enrolled
patients in whom such antibodies were not present at the time enrollment.
After its review, the DSMB unanimously recommended that NIAID terminate the
treatment component of both trials. Their preliminary analysis showed no
significant difference in the percentage of the patients who felt their
symptoms had improved, gotten worse, or stayed the same between the antibiotic
treatment and placebo groups in either trial. The DSMB review suggested there
was only a slight chance a difference between the two groups would be found
even with continued accrual of another 131 patients, the number needed to
reach full enrollment. Therefore, the DSMB recommended that the treatment
component of the studies stop enrolling new patients and that those currently
receiving treatment discontinue that therapy. The DSMB further recommended
that the investigators continue to follow the study patients to monitor their
longer-term safety and to obtain additional information that may have value in
determining the underlying basis of chronic Lyme disease.
The NIAID concurred with the DSMB and study investigators have been
notifying participants of the board recommendations. Future directions of the
study will be decided once these preliminary results are evaluated further.
Prepared by: Office of Communications and Public Liaison Nov. 13 issue � A few days before Halloween, a popular Long Island, N.Y.,
Lyme-disease specialist named Joseph Burrascano entered a state Health
Department hearing room where one of medicine's rancorous academic disputes
will be played out: how much antibiotics is too much when treating Lyme?
This is no mere intellectual inquiry. Burrascano is standing trial before
the Office of Professional Medical Conduct on negligence charges for
medicating some patients for several years on end. By next February he could
be censured or even stripped of his medical license as a result.
Behind this drama is a seemingly simple problem that has balkanized the
Hippocratic community. One side, which includes academics and insurance
companies, says Lyme can be cured with just four weeks of antibiotics; much
more than that is unwarranted, hard on gallbladders and costly besides. The
other side, mostly doctors and their patients, says that in rare intractable
cases the infection will require repeated or prolonged courses of antibiotics,
costing up to $20,000. Both sides have won huge research grants and have
published their studies in medical journals.
Other medical fields are marked by roiling disputes, like whether too many
children are drugged for attention-deficit disorders. But as Robert Cassidy,
director of biomedical ethics at Long Island Jewish Hospital in New York, puts
it: "This is usually the sort of thing that is fought out at professional
meetings, not by tearing off epaulettes in the parade ground."
Nonetheless, physicians who use antibiotics aggressively have been
scrutinized in Michigan, New Jersey, New York, Pennsylvania, Connecticut,
Rhode Island and Oregon, at the urging of scientists from the other side of
the dispute, advocates say. Several have lost their licenses. What is going
on? Connecticut Attorney General Richard Blumenthal, for one, sees conflict of
interest: some witnesses against these doctors may collect money from
insurers, he says. "Our doctors are on tenterhooks," says Pat Smith, president
of the Lyme Disease Association. "What have these people done outside of
treating sick people for their Lyme disease?"
Burrascano is convinced his prosecution is entirely political, "about
differences in opinion about treatment." As a published Lyme expert who has
testified before Congress, Burrascano says he has treated some 7,000 people
from 42 states and 11 countries. "I'm no country doc," he says. "It's not like
I'm doing hocus-pocus." In their complaint, state investigators charged him
with mistreating nine patients. But those patients side with their doctor.
Ruth Giglio, 77, a retired schoolteacher who took several courses of
antibiotics over a six-year illness, was surprised to learn her charts are
evidence against Burrascano. "I totally agree with everything he did," she
says. "I'm better, and that's thanks to Dr. B." So now it is she who ministers
to the doctor�she plans to join other patients at a defense rally this week.
"This is tantamount to a witch hunt as far as I'm concerned."
Dear Mr. France,
I have to thank you for your fine article on the supposed Lyme
"controversy". Reading the article was almost enough to make me cry.
It is incomprehensible how certain physicians are just so blind. I have had
Lyme Disease for eight years.
According to the supposed "experts" at the center of this controversy I
have been cured for most of that time and now have "post Lyme syndrome". Never
mind that there is absolutely no evidence that "post Lyme syndrome" exists.
Never mind that I have twice paid for culture tests and both times viable
spirochetes were cultured from my blood. Never mind that my condition worsens
every time treatment (oral antibiotics) is stopped. Never mind that my
physician believes I have an infection with Borrelia Burgdorferi. Never mind a
half dozen articles (in juried medical journals) that I have personally read
that give ample evidence that chronic infection can occur (not to mention many
other articles I have not read).
Never mind, the dogma says it is all in my head. And the physician I travel
over 4 hours (round trip) to visit every month is a quack and must have his
license revoked. Presumably the theory is that I should be locked up in a
mental institution as a malingerer. Oh, I guess not, I have an imaginary
incurable disease: Post Lyme Syndrome. Since this is an imaginary disease,
there is no known cure. Perhaps a fairy could cure me with her magic wand. My
symptoms couldn't possibly have any relation to the fact I was infected with a
poorly understood bacteria. "Everyone knows" that antibiotics are perfect and
never fail.
Thanks again for the fine article. Once again the press proves itself as
being less biased (and more factual) than the "medical experts".
Rolf Taylor Yesterday, Dr. Joseph Burrascano attended the third in a series of hearings
before the Office of Professional Medical Conduct which oversees medical
licenses in New York State. He has been charged with medical negligence for
allegedly oversubscribing antibiotics to Lyme Disease patients.
Last Thursday afternoon, an estimated 700 Lyme Disease sufferers from
across the country converged on Manhattan to show their support for the man
whom they call their medical savior and whom many others consider the leading
authority on long-term treatment of Lyme Disease.
Standing in Grand Army Plaza on Fifth Avenue, they heard several Burrascano
patients recount their lives before he came into them, representatives of two
national Lyme organizations giving their unqualified support, and a series of
statements read or spoken by doctors, lawyers, and politicians.
Steps away, inside the Plaza Hotel, reporters interviewed six patients
whose medical files were lifted from Dr. Burrascano's office without their
permission. Two longtime LD sufferers planned the rally from bed in their
respective homes. Diane Leary, the event's emcee and a Burrascano patient who
lives in Babylon, spent last weekend in bed. "It was worth the effort," she
said yesterday. "Without Dr. Burrascano, I wouldn't be here today."
Everyday Suffering
Leary's statement echoes those that have been made by countless Burrascano
patients around the world. They credit the East Hampton specialist with saving
their lives and restoring day-to-day function to almost normal. Some of their
testaments can be read on the Internet. Just type in Dr. Burrascano's last
name and click the search button.
In separate interviews with The Independent, Lisa Brown of East Hampton and
Leary recounted similar stories: years of misdiagnosis, intense everyday
suffering from blinding headaches, crippling muscular/skeletal pain, nausea,
vertigo, and long, long periods confined to bed. Leary called LD a "lonely
disease. Everyone else goes out and you stay home in bed, barely able to move,
unable to get up alone." "I would not be alive today were it not for Dr.
Burrascano," Brown told The Independent. "He saved my life."
The OPMC remains unimpressed by the many letters of support for Dr.
Burrascano. Although all the letters that were directed specifically to Gov.
George Pataki remain unanswered, OPMC did respond to one from Senator Daniel
Patrick Moynahan. Those who have seen a copy of the OPMC letter called it the
ultimate insult to Dr. Burrascano. In so many words, it indicated that the
investigating office was ignoring the many letters received because it follows
the American Lyme Disease Foundation protocol.
The ALDF and its legion of supporters, including Boston's Dr. Allen Steere,
who identified the disease in 1975, adhere to a treatment regimen of two to
four-weeks' worth of antibiotics. They claim that treatment beyond that period
is overkill, damaging to the immune system, and no more conducive than
catering to malingerers. "In other words," Dr. Burrascano wrote in a "Lyme
Update 2000," "the reality and truth of Lyme, supported by valid,
peer-reviewed publications and our experience with thousands of patients,
counts for nothing."
Threat of Investigation
Dr. Burrascano is not the first doctor to suffer OPMC scrutiny for their
long-term treatment of LD patients. Representing several doctors, an attorney
who spoke at the rally said that treating LD patients almost guarantees an
investigation will follow. The threat of investigation and the high financial
cost that a defense will incur weighs heavily on doctors with LD patients.
Common belief states that the fear will lead doctors to stop treating LD
patients or refuse to prescribe medicine beyond the alleged normal cutoff
date.
"This is a threat to our own lives," Brown said. "Without my treatment, I
will be bedridden and in indescribable pain again. I can't live that way."
Assemblyman Fred Thiele did not fare much better than Dr. Burrascano
supporters did in their letter-writing campaign to the Governor. A letter he
wrote to the Governor last March went unanswered for two months, then came a
response from the Department of Health underscoring the need to investigate
all complaints. A second letter, written October 12, in which Thiele pointed
out the numbers of patients who come to Dr. Burrascano from around the globe,
brought a quicker response from the Health Department. In his October 31
letter which found its way to Thiele's Bridgehampton office yesterday, Wayne
Osten, director of the Office of Health Systems Management, sounded a note
that could be interpreted as a possible step backward from OPMC's aggressive
investigation to date. Osten noted that the department "clearly recognizes"
that equally qualified experts may render dissenting opinions on the same set
of facts. In the case of LD specifically, Osten admitted that different
schools of thought exist on long-term antibiotic treatment of chronic LD.
Osten wrote that the process provides for the physician under investigation
to present expert medical testimony for consideration by the board, and that
the hearing committee is under no obligation to take disciplinary action
simply because a case was brought forward. He said that while his department
does not have specific guidelines for the treatment of LD, it refers medical
providers to peer-reviewed guidelines and scientific literature for
information on treatment. The National Institutes of Health is sponsoring
clinical studies to understand the cause of continuing symptoms of the disease
in some patients and how best to treat them.
Seven years ago, Dr. Burrascano testified before Congress on then-current
problems in the LD field. Some people are of the opinion that his testimony
prompted the investigation. Dr. Burrascano referred to a "Lyme Disease
conspiracy" within a core group of university-based researchers and physicians
whose opinions carry considerable weight. He questioned their ethics, their
use of "outdated, self-serving views," and their publication of articles "that
are badly flawed."
"This group," he continued, "promotes the idea that Lyme is a simple, rare
illness.... The truth is that Lyme is the fastest growing infectious illness
in this country that often goes undiagnosed for months, years, or forever."
Coming fast on the heels of AIDS, insurance companies are said to have been
loath to underwrite any more long-term prescriptions. There also are
allegations that some doctors were paid to promote short-term LD treatment.
The OPMC did not respond to a query. An insurance agent in another state would
only say that health insurance "is an individual matter."
"There is only one cardinal rule: one must always LISTEN to the
patient." The cotransmission of guilds of microorganisms between ixodid ticks and
their hosts appears to be a common theme worldwide. Ticks related to Ixodes
persulcatus, for example, may simultaneously maintain borreliae, babesiae,
ehrlichiae, and flaviviruses in sigmodontine rodents in many sites. On
Nantucket Island, we have previously demonstrated the maintenance of Borrelia
andersoni and Ehrlichia bovis in cottontail rabbits (Sylvilagus floridanus),
and now describe the presence of a third guild member. DNA was extracted from
spleens and whole blood from rabbits shot during 1998-2000, and analysed by
PCR (18S rDNA target). Of 55 rabbits, 3.6% (95% CI 0-8.5%) were infected by
Babesia microti, known to be intensely zoonotic in this site. Another 27.3%
(95% CI 15.5-39.1%) yielded amplification products that differed by 1 bp (of
364 bp sequenced) from a B. divergens sequence accessioned in GenBank.
Parasites typical for B. divergens morphology were detected in 2 rabbits, one
each from blood and from splenic impression smear. Ticks collected from these
rabbits were pooled in groups of 6 by species and stage, and similarly
analyzed. Of 8 pools of subadult I. dammini, 2.1% (minimum infection rate,
MIR; 95% CI 0-12%) were infected by B. divergens; of 36 pools of adult and
subadult Haemaphysalis leporispalustris, 0.46% were similarly infected (MIR
95% CI 0-2.7%); and of 45 pools of adult and subadult I. dentatus 1.5% (MIR
95% CI 0-5.0%) were infected. Solely I. dammini yielded sequences of B.
microti (4.2%; MIR 95% CI 0-18%). This report comprises the first unequivocal
evidence for enzootic B. divergens in North America. Although this agent
causes severe babesiosis in immunocompromised residents of Europe, the public
health significance of enzootic B. divergens transmission on Nantucket remains
to be described.
FRIDAY, Nov. 17 (HealthScout) -- The young man went to see a psychiatrist
after he'd picked up a friend and thrown him down a flight of stairs. At work,
he'd slammed a co-worker against a wall. He'd never had these kinds of
aggressive outbursts before and was genuinely frightened by his behavior.
But the psychiatrist, Dr. Brian Fallon, an associate professor of
psychiatry at Columbia University, noticed something else. Six months earlier,
the man had complained of having trouble putting his words together.
Diagnosis: Lyme disease.
"He had a classic case of Lyme disease," says Fallon, who also is director
of the Lyme Disease Research Program at the New York State Psychiatric
Institute.
Caused by the Borrelia burgdorferi bacterium and transmitted by tiny deer
ticks, Lyme disease has been reported in nearly every state and throughout
Europe and Asia. It begins as a skin rash, and early symptoms often are
flu-like, including fatigue, headache, fever, muscle stiffness and joint pain.
But if not treated early, Lyme disease can attack the central nervous
system and produce a variety of psychiatric disorders, "from depression to
full-blown psychosis," Fallon says.
"Panic attacks or new onset irritability, insomnia, concentration problems
and depression, or what may look like depression, may actually be undiagnosed
Lyme disease," he says.
That's why it's called "The Great Imitator," Fallon says: Lyme disease
symptoms are similar to those of a host of other medical conditions. And
that's also why a psychiatrist can be important in diagnosing the disease, he
says. Fallon discussed his work at an American Psychiatric Association meeting
a few weeks ago.
"Psychiatrists can be very helpful," he says. "We know what panic attacks
and depression look like. If a patient also has numbness and tingling,
migrating joint pains and a hard time finding the words to say what they want
to say -- instead of 'convertible,' they might say 'a car without a roof on
it' -- that's classic in Lyme disease, but you don't typically see it with
depression."
Plus, the standard blood tests for Lyme disease have a significant rate of
both false positives and negatives, he says, creating a significant number of
misdiagnoses.
Dr. Edward Truemper, director of pediatric intensive care at the Clute
Barrow Nelson Children's Center at St. Mary's Hospital in Athens, Ga., says
he's seen enough Lyme disease with neuropsychiatric features -- from seizures
to altered mental status -- to always ask where a younger patient lives and
plays, and whether the child has pets.
"The ticks for Lyme disease are on deer, dogs and cats," Truemper says. "If
[pets] get into the woods, or you're just in your yard and you've got deer,
squirrels or any species with fur, the chances of ticks are very real."
"When you don't have an explanation with a person with neurologic or
psychiatric symptoms, you need to not say it's all in their head," he says.
"There may be an underlying organic illness, and one of those we're seeing
more and more is Lyme disease. We may not be able to diagnose, but we put them
on the antibiotic, and they get better."
Most people do respond well to the standard treatment, which is four to six
weeks of intravenous antibiotic therapy, experts say. And sometimes the
results are startling, Fallon says.
"There are cases of people I've met with full-blown dementia that was
reversed with appropriate medication," Fallon says.
Demonstrators invaded the normally staid and studious atmosphere of a
national medical meeting here Wednesday, carrying placards and doling out
leaflets intended to refute the teachings of a prominent Lyme disease expert.
The focus of their ire was Dr. Alan Steere, a renowned rheumatologist who
originally linked the disease with tick bites and named it after the town in
Connecticut where it was discovered. Steere has become a lightning rod for
angry patients who feel that his prominence has given his opinion more weight
in the ongoing medical debate over whether Lyme is over- or under-treated. He,
along with many physicians, supports a short-term course of antibiotics while
other doctors disagree, saying that patients may need months, sometimes years,
of treatment.
At the annual meeting of the American College of Rheumatology, dozens of
patients gathered around the front door of the conference center, where they
could catch doctors drifting out for lunch. They said they were holding a
"teach-out" to counter what Steere told rheumatologists inside the building in
a morning session in which he had promised to teach "How to treat and diagnose
Lyme disease." Steere is a researcher at the Tufts University School of
Medicine in Boston.
Ongoing debate
The demonstration is the latest salvo in an unusually acrimonious academic
argument. Patients say they are caught in the middle, that they have trouble
getting proper care and that insurance companies are loathe to pay the high
price of long-term intravenous antibiotic therapy when leading experts like
Steere say that such treatments are completely unnecessary.
Patients are particularly incensed by Steere's involvement in the
malpractice investigation of Dr. Joseph Natole of Saginaw, Mich., who had been
treating Lyme patients with intravenous antibiotics. Steere testified against
the Michigan doctor, and Natole lost his medical license for six months.
Patients decided to fight back, by protesting against Steere when he makes
public appearances and by filing complaints against him in his home state of
Massachusetts. One of the Lyme support groups has been encouraging disgruntled
Steere patients to file complaints with the state's medical board. Thus far,
the medical board has received more than 50 complaint letters concerning
Steere, according to the Massachusetts Lyme Disease Coalition.
As the patient groups have become increasingly vocal, Steere has become
more reclusive. He has refused press interviews, including interview requests
for this article.
Outside the meeting, patients talked about why they were targeting Steere
in particular. "He has been the most public," said Susan MacNamee, 43, of
Perkasie, Pa. "He's the most well known. He even discovered it. So doctors
believe what he says."
Others suggested that Steere's vocal opposition to long-term antibiotics
have led insurance companies to refuse payment for these treatments. "When he
stands up and says we all are cured after four weeks of antibiotics, we can't
get treatment," says Gail Wallin, 50, of Holland, Pa.
Lyme disease�the illness that gets no respect�is on the verge of being
taken seriously in Texas.
A recent report by a legislative committee says Texans are at risk of
getting the disease from blood-sucking ticks, and those who do catch it are
not receiving adequate care. Too many doctors think Lyme, more prominent in
the Northeast, can't happen here, and many patients are forced to search
elsewhere for treatment.
The report recommends that Lyme disease and other tick-borne illnesses be
the target of massive education and prevention efforts, some of which already
are under way. Those recommendations were unveiled at the Capitol on Wednesday
during a forum on tick-borne diseases.
For years, patients in Texas have complained they were misdiagnosed,
mistreated and turned away by doctors who know little about Lyme. Few doctors
in Texas and elsewhere have been willing to treat long-term sufferers because
of criticism and even ostracism by medical boards and other physicians. They
are responding to critics who contend two or three weeks of antibiotics are
sufficient. But many Lyme disease patients find they get sicker as soon as the
drugs stop.
Some doctors say insurance companies discourage long-term treatment because
of the cost. About 50 physicians nationally have been investigated or
disciplined, mainly because of long-term prescriptions of antibiotics.
"It's become more of a political discussion than a medical discussion,"
said Dr. Audrey Stein Goldings of Dallas. "It's hard to believe something the
size of the head of a pin can cause so much trouble and so much controversy."
Stein Goldings spoke on a panel Wednesday at the invitation of the Senate
Administration Committee, which produced the report. "Doctors don't like
dealing with something they're not familiar with," Stein Goldings told an
audience of 35.
Dr. Joseph Burrascano of East Hampton, N.Y., who treated some Lyme patients
from Texas, is now fighting misconduct charges. Dr. Hamid Moayad of Fort Worth
was disciplined in 1997 for his treatment of Lyme disease patients, and
although the restrictions on his medical license were lifted a year later, he
no longer will treat Lyme patients with chronic pain, he said.
Lt. Gov. Rick Perry directed the Senate Administration Committee to review
Lyme and other tick-transmitted diseases, including Rocky Mountain spotted
fever, because of complaints from Lyme disease patients. The committee is
chaired by state Sen. Chris Harris, an Arlington Republican whose Lyme disease
went undiagnosed for years because doctors, including those at the Mayo
Clinic, did not know what was causing his severe pain and the damage to his
heart. It wasn't until Harris' dog died of Lyme that the vet figured out what
was ailing the senator.
Harris' committee is recommending that the state beef up education efforts,
encourage medical schools to teach about Lyme and develop a research and
diagnostic center at the University of North Texas Health Science Center.
"The rate of occurrence of tick-borne illnesses in the U.S. has increased
dramatically over the last few years," the report said. "This growth is second
only to AIDS/HIV among infectious diseases."
Between 1990 and 1999, the state received reports of 2,039 possible cases
of Lyme disease, said Julie Rawlings, an official with the Texas Department of
Health. That could be the tip of the iceberg because many doctors don't know
they are required to report it.
Pat Ricks, an Austin novelist who got Lyme disease in Mexico in 1996 along
with her husband and their two children, said the family has lived a
nightmare. The Ricks' could not find anyone in Austin to treat them for their
long-term ailments and ultimately traveled to Dallas to get help from Stein
Goldings. Virginia Ricks, who was 15 at the time, was hit hardest and had to
drop out of high school for 1 � years. She lost her friends and was on
antibiotics for three years. She's now well and in college. Her brother, Ian,
had headaches and memory problems. Pat Ricks and her husband, Tom, had severe
aches and fatigue.
"There were times when I would be in the bathtub and I would be afraid I
wouldn't be able to get out," Pat Ricks said. "You're sick throughout your
whole body. . . . It completely consumes your life."
Early diagnosis is critical, Stein Goldings said, but no test is 100
percent reliable. Harris' committee hopes the North Texas center will be able
to develop a foolproof test.
If not treated early, the disease is hard to manage and can cause permanent
damage. "Generally, by the time I see people," Stein Goldings said, "they're
in a heap of trouble."
The Lyme Disease Foundation's (LDF) Midwest Task Force, Illinois State
Senator Kathy Parker (R-Northbrook) and State Representative Larry Mckeon
(D-Chicago) recently made major strides to combat Lyme disease in the state.
The two Lawmakers sponsored Senate Bill 1510, which was approved this
spring by the General Assembly and recently signed it into law by Governor
George Ryan. The new law directs the Illinois Department of Public Health to
track the disease and the medical issues surrounding it, and report back to
the General Assembly by Jan. 1, 2002.
In addition to a comprehensive analysis of Lyme disease, the bill calls for
the Department of Health to establish policies, procedures, standards, and
criteria for the collection, maintenance, and exchange of medical information
necessary for the identification of Lyme disease.
A GCLDSG regional meeting for patients and families in North Canton
occurred on a snowy, icy evening in late November. Needless to say, attendance
was few, but those attending were enthusiastic about further meetings.
By ABIGAIL ZUGER, M.D.
Oct-10-00 - New York Times
The
following letter was submitted to be part of a collection of letters to NY
congresspeople and the NY office of Professional Medical Conduct in support of
doctors who are being investigated for long-term treatment of Lyme disease.
Our thanks to Gordon for permission to print it here.
Gordon B. Hall
North Ridgeville, Ohio
(The
NIH has announced the curtailment of a $5 million study of chronic Lyme
Disease which had been awarded in 1995. The study had been extended after 3
years because of difficulties getting subjects to participate. Ed.)
Interim Analysis of NIAID Chronic Lyme Disease Treatment Studies
Statement November 29, 2000
National
Institute of Allergy and Infectious Diseases
National Institutes of Health,
Bethesda, MD 20892
U.S. Department of Health and Human Services
The
debate about how to treat this illness has patients raging�and doctors losing
their licenses
By David France
NEWSWEEK - 5 Nov 2000:
East Cleveland, OH
(Originally infected in Westchester
NY)
By Nancy Hyden Woodward
East Hampton Independent -
Nov. 15, 2000
Quote of the Month
Dr. Oliver Sacks, neurologist and author
in
Cottontail Rabbits on Nantucket Island
Goethert HK
Telford SR,
Harvard School of Public Health, Boston MA,
By Pat Curry
HealthScout Reporter
patients
divided on therapy for tick-borne disease
By Lynda
Carroll (Special To MSNBC)
Philadelphia. Nov. 1 �
By Mary Ann Roser American-Statesman Staff
Thursday, November 16, 2000
|
To view the previous Vol. 10.5 of the newsletter, go here
|