posted 05 March 2004 10:11               

Thank you flyers999 for this post over in ‘seeking’ !!! http://flash.lymenet.org/ubb/Forum2/HTML/001546.html

Protecting our LLMDs…

Source: The Lyme Times
Byline: By Phyllis Mervine, Editor
Date: October 1994

In 1993, a physician at a New Jersey hospital is investigated because
a number of patients, treated with the IV drug ceftriaxone, have to
have their gall bladders removed. In Oregon, a physician is reported
to the State Medical Board by an HMO which disagrees with his
diagnosis. A disciplinary hearing is held, and the physician's
practice is subsequently restricted.

In Pennsylvania, an investigator from the State Medical Board shows up at a doctor's office in response to a complaint that the doctor is overtreating patients. Another physician opts for a court trial after the Michigan State Medical Board, acting on complaints from other physicians, accuses him of misdiagnosing and overtreating his patients.

What do these four physicians have in common? According to reports,
they all treat large numbers of patients with Lyme disease. In each
case, officials have questioned whether the patients treated actually
have Lyme disease, and whether the treatments used were appropriate.
The question of why these particular physicians are being singled out
for such intense scrutiny can be addressed by examining the diagnosis
and treatment picture in the United States. The first impression of
Lyme disease for many physicians comes from the Centers for Disease
Control case definition.

This case definition is admittedly strict,
and necessarily so, because is intended for use as a surveillance
tool, to include only cases about which there is no doubt. The
problem comes when physicians unfamiliar with Lyme disease try to use
the case definition as a diagnostic tool. That many patients with
actual Lyme disease do not meet the CDC case definition has been
demonstrated by a 1993 active surveillance program in California
(Ley, West J Med 1994; 160:534-539).

To complicate matters, questions about diagnosis are frequently
referred to the researcher who first described the disease in 1977,
Dr. Alan Steere of the New England Medical Center. Dr. Steere, a
rheumatologist, takes a very conservative stance on the prevalence
of Lyme disease. In a recent controversial study his research team
concluded that up to 77% of patients who had previously been diagnosed
with Lyme disease by other physicians, actually did not have the
disease (JAMA 1993;269:1812-16).

Some treating physicians, including
the four mentioned above, obviously do not agree with Dr. Steere's
assessment. Two cogent critiques of his methodology and conclusions
were published in the Lyme Times (No.11, Sept. 1993)

Another stumbling block is the question of endemnicity. Whether Lyme
disease is or is not thought to exist in a certain area depends upon
the willingness of physicians in that area to diagnose the disease.
That willingness is, in turn, dependent upon the physicians'
perception of the likelihood of the disease occurring in the area.
Geographical areas are considered non-endemic unless cases are
reported from the area, but patients from those areas are sometimes
told that they can't have Lyme disease because "we don't have it
here."

A case in point is British Columbia, Canada, which was
described in the medical literature as nonendemic until
epidemiological and entomological studies culminating in 1993 proved
the existence of Borrelia burgdorferi in native ticks, rodents, and
human beings (Banerjee, Can Dis Wkly Rpt 1993;19-24:204-5). This
research was published shortly after authors of another study
suggested that a Lyme disease clinic could be useful even in a
"nonnendemic" area, since the physician could tell most patients with
suspected Lyme disease that they did not, in fact, have it (Burdge,
Clin Infect Diseases 1993:16:558-60).

The CDC and other authorities frequently emphasize that Lyme disease
is a clinical diagnosis. Negative tests cannot conclusively prove
non-Lyme, nor can positive tests conclusively prove Lyme.
Unfortunately, both these facts are liable to misuse. According to
one expert, the seronegative patient is likely to be sickest.
(Liegner, J Clin Microbiol 31;8:1961-63) Borrelia burgdorferi (Bb)
has been reported to suppress the immune system (Barthold, Lyme Times
13:26), as well as to evade it.

On the other side, serologic surveys
of endemic areas show many people who have antibodies to Bb, but who
are not sick (Huyke, J Infect Dis 1992;165:1133-37). Some of these
individuals may have subclinical symptoms (Vidaillet, Amer J Cardiol
1993;17:1249-51).

Disease descriptions can be used as a guideline, but the constellation
of symptoms may vary considerably from case to case. The diagnosing
physician must rely on her/his personal experience and intuition.
This is that gray area where the physician becomes an artist.
Optimal treatment for Lyme disease is another subject of intense
debate within the medical community. Early studies recommended two
weeks of antibiotics as curative.

As experience with refractory cases
mounted up, some physicians tried longer treatments, as well as
different combinations of drugs. Although some of these experiments
were successful, other physicians cling to the original protocols,
apparently discounting several studies which prove persistence of
infection despite antibiotic treatments (Preac-Mursic, Infection
17:355, and others). Some of the drugs used have documented risks and
side effects.

In the New Jersey case, patients testified that they
knowingly and willingly undertook the risks of using the drugs in
order to be free of their disease symptoms.

Diagnosis and treatment of Lyme disease are complex arts. The unnamed
physicians above now have to defend their art to the skeptics. They
were diagnosing and treating many patients with Lyme disease. When
their patients did not get well with two weeks of antibiotics, they
questioned the hypothesis of the easy two-week cure and struck out
over uncharted territory.

Although some of their patients responded
well to their innovative treatments, the doctors are now being
censured by the medical community.

Dr. Dorothy Pietrucha, a pediatric neurologist who treats many Lyme
disease patients, is angry about the situation. "Why should doctors
extend themselves?" she asks. "Lyme disease is hard to diagnose and
hard to treat, but instead of getting support from the medical
community, doctors who treat Lyme disease patients are having their
licenses threatened. If a Lyme patient has a complication of
treatment, though he is better, the doctor is criticized. If an
AIDS patient dies, the doctor receives sympathy and support."

Dr. William Brown of Portland, Oregon learned how to treat Lyme
disease by catching it himself. A constellation of symptoms emerged
after a nine-year latency period. Brown was diagnosed with
myofasciitis, reactive arthritis, and atypical multiple sclerosis
before discovering he had seronegative Lyme disease. A two-week
treatment with ceftriaxone led to temporary improvement, but did not
cure him.

He finally recovered fully after using long-term
combination oral antibiotics, and started to use what he had learned
in his own practice. Brown became the focus of unwanted attention
when an HMO reviewer reported him to the State Board.

"I went to the hearing with my charts and literature, including papers
by Preac-Mursic, Liegner, and others," states Brown. "I acknowledged
that yes, I do treat seronegative patients and yes, I do treat with
long-term antibiotics. I cited and provided some of the papers
documenting the validity and need for both. I discussed the problems
with Lyme serologies, and reviewed the other tests I use in
differential diagnosis. They weren't interested in my discussion or
the papers I brought.

I was grilled for several hours, and was
treated like a pariah.... It was a disciplinary hearing; they weren't
there to learn anything. The fact that 5 out of the 6 patients whose
charts they reviewed had dramatically improved, and returned to
productive lives, didn't matter." On April 1, 1994, Dr. Brown signed
a consent letter, agreeing to no longer treat Lyme disease.

The Pennsylvania doctor was luckier. When another physician
complained to the State Medical Board that he was using two
antibiotics on one of his patients, an investigator came to visit.
The office nurse assembled and mailed to the complainant a three-inch
thick folder of articles with particular citations supporting the
treatment highlighted in yellow, with a summary of the conclusions of
each article stapled in front. She included a copy of Appendix F: FDA
Drug Bulletin, which states in part: "The FD&C Act does not, however,
limit the manner in which a physician may use an approved drug. Once
a product has been approved for marketing, a physician may prescribe
it for uses or in treatment regimens or patients populations that are
not included in approved labeling.

Such 'unapproved' uses may be
appropriate and rational in certain circumstances.... Valid new uses
for drugs already on the market are often first discovered through
serendipitous observations and therapeutic innovations, subsequently
confirmed by well-planned and executed clinical investigation."

The episode was concluded without further repercussions, but the
doctor feels vulnerable. "I have never claimed to be a 'Lyme
expert,'" he says. "We just have a lot of hands-on experience."
Dr. Joseph Natole is in trouble after accepting patients who had been
told by other physicians that they did not have Lyme disease. He had
already made the Michigan Department of Health nervous by reporting
50 Lyme cases in 1989, before reporting was mandatory, from counties
which were not believed to be endemic, since no tick had been
discovered.

The State has produced an "expert" witness, a physician
who admitted in court that she has not treated one case of Lyme
disease in the past five years. Several patients are scheduled to
testify for Dr. Natole, but defense attorney Patrick McGraw lamented
that of 111 physicians invited, all known to treat Lyme disease, only
two responded. The others do not want their names known. The
Attorney General's office, on the other hand, has obtained a
deposition from Dr. Steere. The situation today may be blamed partly
on the anonymity and specialization of our medical care system.

Many physicians no longer live in the communities where their patients
reside, instead, they treat from urban specialty clinics. Correct
diagnosis is more important than ongoing care. Patients who are
unsuccessfully treated at such centers are unlikely to return.
Country doctors have a different experience. Ed Masters, MD, of
Missouri, can't escape from his patients, who are also his friends and
neighbors.

If he stops treatment before they are well, they return to
his office and insist he treat them again. In this way Dr. Masters
learned that two weeks of antibiotics often did not cure Lyme disease.
What is to be done? "Go to your Department of Health and to your
elected officials, and do something!" recommends Dr. Pietrucha.
"If the patients don't stop this, they are going to find they will
have no doctors willing to treat them. Doctors who are willing to
take on a difficult disease should be given some support, and should
not have to operate with this cloud hanging over them."

"The bottom line is that the physician's responsibility is to help the
patient feel better, whether or not s/he can affect a cure," says Dr.
Willy Burgdorfer, discoverer of the Lyme disease spirochete. He
reminds us that another spirochetal disease, syphilis, is not
considered curable in its later stages, but patients receive
antibiotic treatment nonetheless. The State Medical Boards now
sitting in judgment over these doctors are attempting to usurp the
power of deciding which patients should be treated. This power should
belong to the individual physician, as long as s/he is acting in good
faith and is not committing any crimes. Science has not yet provided
the answers to all our questions about Lyme disease, but the welfare
of the patients should be the primary focus. Persecuting the doctors
who treat them is not the solution.

John O'Donnell contributed to this report.

------------------
C O L O R A D O * S U P P O R T * S Y S T E M
melaniereber@juno.com

posted 06 March 2004 15:35               

Your post pushed me over the brink; I'll have to become much more of an activist now. On second thoughts, I don't know whether to thank you or not....

Anyone else activising in the NW, particularly WA, let me know. Cheers, M

I'm editing to add that your post here supports the notion of not splitting up the forums - I'd never have seen it in Seeking. I wish there were some way to make the top page last longer, though. Info goes by so fast!

posted 06 March 2004 15:38               

get in touch with Lishs Mom...can't be in better hands there!

M

posted 08 March 2004 01:17               

This is exactly where the current problem lies.

Most of us who have been around the lyme community for a time ARE aware of who the prominent LLMDs are…

The confusion is that the new members do NOT.

If we begin posting some names and not others…it is difficult for the new members to know which LLMDs have given permission and which have not.

For this reason alone…it is important that we all stick with the rules on LN and only use initials. Unless; express permission has been granted to do otherwise.

We need our LLMDs very badly…so we must do all that we can in order to protect them from unfounded prosecution.

When sharing LLMD names…it is highly recommended that you know exactly who is asking. Before giving out ANY names, be certain that you can trust who you are trying to help.

I get countless requests for help…and some are suspicious. I always have to reply with more questions before I am willing to share any names.

This may annoy or frustrate some…but, if they understood the magnitude of what our docs are fighting…they would also understand that caution should be used at ALL times.

We do have an opportunity to make a change here...see the latest on the OPMC bill...and do what you can to join the many who are fighting tirelessly to make a difference!

M

posted 13 March 2004 14:37               

I'll begin referring people to my LLMD ina more appropriate manner.

posted 13 March 2004 19:45               

Please see
www.lymeinfo.net
and read the history back to 1993 with Joe B. and subsequent fallout of what happens to those who have the moral integrity and courage to not only diagnose Lyme and related diseases, but to also treat patients.

also look at
www.faim.org;
more info on the persecution of physicians such as those in your state, minoucat.

That being said, there are some physicians who want their names out there, but please, better to be safe than sorry.

I'm certain many of you did not know how low some infameous people will go to get good physicians to stop recognizing Lyme disease, but trust that this is true.

Don't take my word for it though, when you can, read the history of what has happened in many states.

In NY, the majority of Lyme treating physicians have been "targeted", so do please be careful; it is not anyone's fault that they did not know this; who would believe something so disgusting, but unfortunately, it is reality.

This is one reason why the OPMC bills are so important (see the threads in general section about one of these bills, and also see the above websites.)

Sincerely,
Regina
neurochem1@aol.com

posted 24 March 2004 17:18               

With so many newbies maybe we should kepp posting these rules and also remind them to click on

Help/Questions,SiteSearch,Links,About LymeNet.....well hopefully we all get the picture.

Thanx for the article and the reseach,Jamie

posted 04 November 2004 14:02               

I am new so please bear with me when I ask this stupid question. I am unsure of the rules that apply to this forum, can you or someone as savy please clue me in so I do not make a stupid mistake.

I know some of this should be common sense but I have a lyme brain so I need help!

posted 04 November 2004 14:53            

Ladyhawk, welcome to the lymenet board.

I hope someone will post TINCUP's post of LINKS FOR NEW MEMBERS ... it's an extensive list for you to learn from; things you never even thought of; they cover it. I'm editing & adding it here for you:
http://flash.lymenet.org/ubb/Forum1/HTML/009342-12.html

Betty G., Iowa

posted 04 November 2004 16:40            

http://www.actionlyme.com/Liegner.htm

Specifically:

"Spring of 2000, the Infectious Diseases Society of America (IDSA) published Practice Guidelines for the Treatment of Lyme Disease.

It asserted that there was no significant evidence that 'chronic Lyme disease' exists

as a separate diagnostic entity and that there is no role for treatment with antibiotics beyond one or at most two months

for any case of Lyme disease (Document 17). Insurance companies have "glommed on" to

these guidelines and routinely deny reimbursement to insureds for oral and intravenous antibiotic treatment extending beyond 60 days. Insurance company pharmacy

benefit managers keep track of physician prescribing patterns. Physicians whose

prescribing patterns do not conform to IDSA guidelines have been targeted and reported to State Departments of Health for

investigations for medical misconduct. It is a "no lose" proposition for the insurance industry. This enmeshes such physicians in a costly, stressful and time consuming

administrative process that pits them individually against the vast power and

resources of the State and jeopardizes their professional reputations, practices and financial solvency. Even if they win, they

lose. It sends a chilling message to rank and file physicians and undermines

physicians' professional autonomy. Not surprisingly, persons with chronic Lyme disease are having increasing difficulty

finding any physician anywhere willing to see them."

______________________________

I have recently posted names of those that are recently denying me treatment. Is that also discouraged?

posted 09 December 2004 19:28            

quote:

---

Originally posted by lou:
up

---