LymeNet Newsletter Volume 3 Issue 02

Volume: 3
Issue: 02
Date: 10-Feb-95

Table of Contents:

I. Q&A: Question About Platelet Count (A) II. LYME TIMES: Threat Of Disciplinary Action Creates Tense Atmosphere For Lyme Docs III. JAMA: Identification of Borrelia burgdorferi In Diffuse Fasciitis With Peripheral Eosinophilia: Borrelial Fasciitis IV. About The LymeNet Newsletter

Newsletter:

*********************************************************************** * The National Lyme Disease Network * * LymeNet Newsletter * ***********************************************************************

IDX# Volume 3 - Number 02 - 2/10/95 IDX# INDEX IDX# IDX# I. Q&A: Question About Platelet Count (A) IDX# II. LYME TIMES: Threat Of Disciplinary Action Creates Tense IDX# Atmosphere For Lyme Docs IDX# III. JAMA: Identification of Borrelia burgdorferi In Diffuse IDX# Fasciitis With Peripheral Eosinophilia: Borrelial Fasciitis IDX# IV. About The LymeNet Newsletter IDX#

QUOTE OF THE WEEK:

"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."

-- Dr. Willy Burgdorfer, discoverer of the Lyme disease spirochete (See Section II)

I. Q&A: Question About Platelet Count (A) -------------------------------------------- Sender: Ray Dattwyler <[email protected]>

Platelet counts are usually not effected by B. burgdorferi. However, one must remember that Ixodes ticks not only carry B. burgdorferi but other microorganisms as well. Low platelets and other hematolgic abnormalities are associated with babesia infection. On Long Island and along the coast of Southern New England many of the Ixodes tick carry both organisms.

=====*=====

II. LYME TIMES: Threat Of Disciplinary Action Creates Tense Atmosphere For Lyme Docs -------------------------------------------------------------- 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.

=====*=====

III. JAMA: Identification of Borrelia burgdorferi In Diffuse Fasciitis With Peripheral Eosinophilia: Borrelial Fasciitis ----------------------------------------------------------------- AUTHORS: Granter SR, Barnhill RL, Hewins ME, Duray PH ORGANIZATION: Department of Pathology, Brigham and Women's Hospital, Boston, MA REFERENCE: JAMA 1994 Oct 26;272(16):1283-5

OBJECTIVE -- To determine if spirochetes could be localized in biopsy specimens of patients with diffuse fasciitis and peripheral eosinophilia. PATIENTS -- Tissue from two patients received in consultation and retrieved from hospital files. One patient had a history of tick bite and erythema migrans. SETTING -- Tertiary care center and pathology consultation practice. METHODS -- Multiple tissue sections were examined for spirochetes using the modified Dieterle or Steiner technique. One case was examined using rabbit polyclonal antibodies against Borrelia burgdorferi. One case had sufficient tissue to study for B burgdorferi DNA by polymerase chain reaction. RESULTS -- We identified two cases of diffuse fasciitis associated with peripheral eosinophilia in which spirochetal organisms were identified. The two patients had positive or borderline B burgdorferi serological findings. Deep biopsy was diagnostic of diffuse fasciitis with eosinophilia. In one patient, multiple organisms were seen using a modified Dieterle silver stain, and B burgdorferi-specific DNA was
amplified by polymerase chain reaction. In the other patient, no unequivocal organisms were detected on silver stain; however, organisms were detected using rabbit polyclonal antibodies against B burgdorferi. CONCLUSION -- Some cases of what has previously been described as eosinophilic fasciitis may be an expression of Lyme disease, and we propose the more specific term borrelial fasciitis to describe such lesions.

=====*=====

IV. ABOUT THE LYMENET NEWSLETTER ---------------------------------- For the most current information on LymeNet subscriptions, contributions, and other sources of information on Lyme disease, please request the LymeNet Resource Guide. To obtain the Guide, send a blank message to: [email protected] ----------------------------------------------------------------------- The LymeNet Resource Guide is in Revision: 1.10 ----------------------------------------------------------------------- LymeNet - The Internet Lyme Disease Information Source ----------------------------------------------------------------------- Editor-in-Chief: Marc C. Gabriel <[email protected]> FAX: 908-789-0028 Contributing Editors: Carl Brenner <[email protected]> John Setel O'Donnell <[email protected]> Frank Demarest <[email protected]> Advisors: Carol-Jane Stolow, Director <[email protected]> William S. Stolow, President <[email protected]> The Lyme Disease Network of New Jersey (908-390-5027)

----------------------------------------------------------------------- WHEN COMMENTS ARE PRESENTED WITH AN ATTRIBUTION, THEY DO NOT NECESSARILY REPRESENT THE OPINIONS/ANALYSES OF THE EDITORS. ----------------------------------------------------------------------- THIS NEWSLETTER MAY BE REPRODUCED AND/OR POSTED ON BULLETIN BOARDS FREELY AS LONG AS IT IS NOT MODIFIED OR ABRIDGED IN ANY WAY. ----------------------------------------------------------------------- SEND ALL BUG REPORTS TO [email protected] -----------------------------------------------------------------------