LymeNet Newsletter Volume 8 Issue 01

Volume: 8
Issue: 01
Date: 30-Jan-00

Table of Contents:

I. LYMENET: NYU Professor Responds to Burrascano Investigation II. LDF: 13th International Conference on Lyme Disease and Other Tick-Borne Disorders III. ARCH DERMATOL: Solitary erythema migrans in Georgia and South Carolina IV. EUR J CLIN MICROBIOL INFECT DIS: Incidence of Lyme borreliosis in the Wurzburg region of Germany. V. JAMA: Borrelia burgdorferi-specific immune complexes in acute Lyme disease. VI. ABOUT THE LYMENET NEWSLETTER

Newsletter:

*********************************************************************** * The National Lyme Disease Network * * http://www.LymeNet.org/ * * LymeNet Newsletter * *********************************************************************** Publishing Lyme disease information on the Internet since 1993

Volume 8 / Number 01 / 30-JAN-2000 INDEX

I. LYMENET: NYU Professor Responds to Burrascano Investigation II. LDF: 13th International Conference on Lyme Disease and Other Tick-Borne Disorders III. ARCH DERMATOL: Solitary erythema migrans in Georgia and South Carolina IV. EUR J CLIN MICROBIOL INFECT DIS: Incidence of Lyme borreliosis in the Wurzburg region of Germany. V. JAMA: Borrelia burgdorferi-specific immune complexes in acute Lyme disease. VI. ABOUT THE LYMENET NEWSLETTER

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I. LYMENET: NYU Professor Responds to Burrascano Investigation ----------------------------------------------------------------- Sender: Doris Aaronson, Ph.D. <[email protected]>

It has come to my attention that one of the most nationally distinguished Lyme disease doctors and researchers, Dr. Joseph Burrascano of Long Island, NY, needs the help of Lyme patients, their family and friends. I have some comments on his situation based on my experiences as a chronic Lyme patient, as one who is knowledgeable of the medical research on Lyme, and as an NYU professor who has taught research methods and statistics to graduate and undergraduate students for over 30 years, including those headed for careers in medicine.

Dr. Burrascano is about to be prosecuted for medical misconduct by the NY State Office of Professional Medical Conduct. OPMC has already investigated 17 other physicians who treat Lyme patients. The statistical odds are that doctors prosecuted by OPMC for providing long-term antibiotic treatment for chronic Lyme patients will have their medical licenses revoked, suspended or restricted (to not treating Lyme patients); they will be fined, and defense costs will run about $100,000.

The OPMC procedures are highly biased from the start. In a letter to a Lyme disease patient in explaining the procedures used by the NY OPMC, Dr. Marks, Executive Secretary of the OPMC wrote "Rarely, if ever, have the published guidelines indicated that anything more that (sic) tow (sic) - three weeks of antibiotics are required to cure Lyme disease." However, Dr. Marks' statement is contradicted by numerous research articles in peer-reviewed biomedical journals, indicating (a) that many Lyme patients are not cured by 2-3 weeks of antibiotics, (b) that some of those are cured after months or years of antibiotic treatment, and (c) some are never cured. The National Institutes of Health is currently funding research on category (b) and (c) patients. Biomedical research has already documented some of the ways that Lyme bacteria can resist the effects of antibiotics.

It appears from Dr. Marks' statement that OPMC has set up procedures which DEFINE medical misconduct to target physicians who use long-term antibiotic therapy. This would obviously deprive thousands of Lyme patients of experienced physicians like Dr. Burrascano. There are two important causal factors in this attack on such physicians. (1) It appears that many of these attacks are inspired by medical insurance companies which do not want to pay for long-term antibiotic therapy, especially costly I.V. therapy. (2) Some of the Lyme researchers who are involved in defining the standards for diagnosis and treatment of Lyme used by the State and Federal Governments are ego-involved in the "theory" stated by Dr. Marks, and further, they use flawed research procedures to support their theory.

The flaw in much of their research is that they have very restrictive criteria for the category of patients that can be used in their research. Then they inappropriately generalize their research results to all Lyme patients including many who do not meet the restrictive criteria. Every text book in either introductory statistics or research methods warns that false conclusions can be made based on inappropriate generalization from a research sample population to other populations with attributes that differ from the research sample. These researchers use as participants only patients with recent, short-duration Lyme disease for which short-term therapy generally works. They do not use patients with long-term chronic Lyme, for which long-term and aggressive antibiotic therapy is required. One can observe the flawed logic by reading some of the publications of the Lyme researchers who support Dr. Marks' theory, and by discussions with knowledgeable physicians who are familiar with the Lyme research.

In my own case, I had a wide variety of clinical symptoms of Lyme for well over 15 years, and had misdiagnoses on 22 occasions by doctors who regularly under-diagnose Lyme. After I diagnosed myself, had that diagnosis verified by 6 consecutive positive blood tests taken by a NJ doctor who regularly underdiagnoses and undertreats Lyme, and was treated by inappropriate and ineffective oral antibiotics, I decided to seek another doctor. I was referred to a team of distinguished NY doctors involved in the group represented by Dr. Marks' views. But they refused to take me as a patient BECAUSE I did not meet any of their research criteria of (a) having a known tick bite, (b) within 2 months or less of starting antibiotic treatment, and (c) experiencing a "bull's-eye" rash. Separate from their research, those doctors would not provide clinical treatment in cases where short-term therapy might not work.

Fortunately, I found a doctor who had read Dr. Burrascano's research and followed his treatment philosophy. After a few more tests to eliminate alternative diagnoses, I was put on close to 2 months of daily double-doses of I.V. antibiotics, followed by years of oral antibiotics. The result is that I can continue to teach and do research. Without aggressive long-term antibiotic therapy, which would likely be defined as medical misconduct by people with Dr. Marks' views, I would have cost an insurance company, my employer and/or the government a substantial amount of money for permanent medical disability benefits, as opposed to only 9 months of disability.

If Dr. Burrascano is convicted and punished by NY OPMC, not only will his patients suffer, but thousands of others, like myself, whose doctors learn from Burrascano's publications, will suffer. A "political witch hunt" is going on in NY State, and it threatens many ethical and experienced doctors who treat long-term Lyme patients. I encourage you to help present and future Lyme patients by helping to defend Dr. Burrascano. As soon as possible (as his trial by OPMC is approaching), send your comments in support of Dr. Burrascano, and his views of giving long-term antibiotic therapy to patients who don't respond to the 2-3 week version, to Gov. Pataki's email address: [email protected]

Other NY email addresses to cc your same email are the following: [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] [email protected]

In addition to your emails to the relevant governmental people, you might want to consider joining the Foundation for the Advancement of Innovative Medicine (FAIM), which is supporting Dr. Burrascano's defense. FAIM's $35 dues provides a quarterly health-relevant newsletter. For information about FAIM phone 1-877-634-3246.

Prof. Doris Aaronson, Ph.D. Departments of Psychology, Neural Science and Linguistics New York University [email protected] Dr. Aaronson's research has focused on psychological and neural factors in dyslexia, language acquisition, and verbal memory.

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II. LDF: 13th International Conference on Lyme Disease and Other Tick-Borne Disorders ------------------------------------------------------------------ Sender: Lyme Disease Foundation <[email protected]>

March 25 & 26, 2000 Hartford Marriott, Farmington, CT 800-228-9290 Travel: Huntington Hay Travel 800-783-9783

PROGRAM COMMITTEE: Program Coordinator and Basic Sciences: James Miller, PhD UCLA School of Medicine

Clinical: Sam Donta, MD Boston University School of Medicine Brian Fallon, MD Columbia University College of Physicians & Surgeons

Entomology: Ed Bosler, PhD Stonybrook School of Medicine

Epidemiology: Julie Rawlings, MPH Texas Department of Health

Posters: Charles Pavia, PhD New York Medical College Ronald Schell, PhD University of Wisconsin School of Medicine

PROGRAM AGENDA: Saturday, March 25, 2000 (8am -5:15pm) 7:00 - 9:00 Registration * Keynote Richard Blumenthal, Attorney General of Connecticut * West Nile virus: Epicenter to epidemic and expectations in 2000 * West Nile virus in Connecticut * Overview of human ehrlichioses and Rocky Mountain spotted fever in the US * Coinfections * Lyme disease in the South * Analysis of Southern Borrelia * Babesiosis Krause * Preliminary in vitro and in vivo findings of hyperbaric oxygen treatment in experimental Borrelia burgdorferi infection * Immunity against host-adapted Bb in the rabbit * Immunologic aspects of Vlse, a Bb antigenic variation protein * An Immunodominant peptide of Bb Vlse: Role in diagnosis and pathogenesis * Antibiotic treatment of Lyme borreliosis: A review of results with dogs * A Borrelia burgdorferi repetitive antigen that confers protection against eperimental Lyme disease * Use of borreliacidal assay in the serodiagnosis of Lyme disease * Lyme neuroborreliosis: Role of PCR and culture in the diagnosis and
in the confirmation of relapse after antibiotic treatment * Laboratory testing panel Tilton, Shah, Schell, Golightly, Mordechai

Sunday, March 26, 2000 (8am - 5pm) * Keynote Willy Burgdorfer, PhD, MD * Characterization of an immune evasion system in Lyme disease spirochetes * Environmental regulation of gene expression in Bb * Matrix metalloproteinases in Lyme disease pathogenesis * Interleukin-10 regulation during acute Lyme arthritis in dogs * T-cell response * Protection against tick-transmitted LD in dogs vaccinated with a multiantigenic vaccine * OspA vaccine update, including serologic results and range of EM rashes * Atypical EM and acute Lyme disease * Neurologic Lyme disease in children and adolescents * Cognitive deficits in children with chronic Lyme and the public health/educational implications * Neurologic Lyme disease in adults * Neuroimaging in neuropsychiatric Lyme disease: Uses, abuses, and the future * Pharmacologic properties of antibiotics and their relevence to Lyme disease * Treatment Roundtable Fein, Leigner, Donta, Pietrucha, Burrascano

FACULTY: John Anderson, PhD Connecticut Agricultural Experiment Station Edward M. Bosler, PhD SUNY at Stony Brook School of Medicine Willy Burgdorfer, PhD, MD National Institutes of Health Joseph Burrascano, MD Southhampton Hospital Patricia Coyle, MD SUNY at Stony Brook School of Medicine Sam Donta, MD Boston University School of Medicine Brian Fallon, MD Columbia University College of Physicians & Surgeons Lesley Fein, MD St. Barnabus & Mountainside Hospitals Alan Frey, PhD New York University School of Medicine Mark Golightly, MD Stonybrook School of Medicine Angela James, PhD Centers for Disease Control and Prevention Peter Krause, MD University of Connecticut School of Medicine Kenneth Liegner, MD Westchester Medical Center Louis Magnorelli, PhD Connecticut Agricultural Experiment Station Richard Marconi, PhD Medical College of Virginia Edwin Masters, MD Regional Primary Care Physicians Adrianna Marques, MD National Institutes of Health Tracey McNamara, DVM National Wildlife Conservation / Bronx Zoo
James Miller, PhD UCLA School of Medicine Eli Mordechai, PhD Medical Diagnostic Laboratories Steve Norris, PhD University of Texas Medical School Jim Oliver, PhD Georgia Southern University Jarmo Oksi, MD, PhD Turku University Central Hospital, Department of Medicine, Finland Christopher Padduck, MD Centers for Disease Control and Prevention Dennis Parenti, MD SmithKline Beecham Biologicals Charles Pavia, PhD NYMedical College School of Medicine, NYCOM Microbiology and Immunodiagnostic Laboratory of NYIT George Perides, MD Beth Israel Deaconess Medical Center Mario Philipp, PhD Tulane University School of Medicine Dorothy Pietrucha, MD Cornell/NYHospital, Jersey Shore Medical Center Marian Rissenberg, MD Assistant Professor, Columbia University Scott Samuels, PhD University of Montana School of Medicine Rheinhard Staubinger, DVM, PhD Cornell University School of Veterinary Medicine Ronald Schell, PhD University of Wisconsin School of Medicine Jyotsna Shah, PhD Igenex Laboratories Richard Skare, PhD Texas A & M University Health Science Center
Richard Tilton, PhD BBI Clinicial Laboratories

TARGET AUDIENCE: This conference is designed for clinical professionals (including but not limited to Primary Care Physicians, Nurse Practitioners, Physician Assistants, Public Health Officers, Researchers and Veterinarians) and for other health professionals (medical directors, risk managers) who wish to enhance their knowledge of Lyme disease and other tick-borne disorders.

REGISTRATION:http://www.lyme.org/lyme/reg.html

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III. ARCH DERMATOL: Solitary erythema migrans in Georgia and South Carolina ------------------------------------------------------------------- AUTHORS: Felz MW, Chandler FW Jr, Oliver JH Jr, Rahn DW, Schriefer ME ORGANIZATION: Department of Family Medicine, Medical College of Georgia, Augusta 30912-3500, USA. [email protected] REFERENCE: Arch Dermatol 1999 Nov;135(11):1317-26 ABSTRACT:

OBJECTIVE: To evaluate the incidence of Borrelia burgdorferi infection in humans with erythema migrans (EM) in 2 southeastern states. DESIGN: Prospective case series. SETTING: Family medicine practice at academic center. PATIENTS: Twenty-three patients with solitary EM lesions meeting Centers for Disease Control and Prevention (CDC) criteria for Lyme disease. INTERVENTIONS: Patients underwent clinical and serologic evaluation for evidence of B burgdorferi infection. All lesions underwent photography, biopsy, culture and histopathologic and polymerase chain reaction analysis for B burgdorferi infection. Patients were treated with doxycycline hyclate and followed up clinically and serologically. MAIN OUTCOME MEASURES: Disappearance of EM lesions and associated clinical symptoms in response to antibiotic therapy; short-term and follow-up serologic assays for diagnostic antibody; growth of spirochetes from tissue biopsy specimens in Barbour-Stoenner-Kelly II media; special histopathologic stains of tissue for spirochetes;
and polymerase chain reaction assays of tissue biopsy specimens for established DNA sequences of B burgdorferi. RESULTS: The EM lesions ranged from 5 to 20 cm (average, 9.6 cm). Five patients (22%) had mild systemic symptoms. All lesions and associated symptoms resolved with antibiotic therapy. Overall, 7 patients (30%) had some evidence of B burgdorferi infection. Cultures from 1 patient (4%) yielded spirochetes, characterized as Borrelia garinii, a European strain not known to occur in the United States; 3 patients (13%) demonstrated spirochetallike forms on special histologic stains; 5 patients (22%) had positive polymerase chain reaction findings with primers for flagellin DNA sequences; and 2 patients (9%) were seropositive for B burgdorferi infection using recommended 2-step CDC methods. No late clinical sequelae were observed after treatment. CONCLUSIONS: The EM lesions we observed are consistent with early Lyme disease occurring elsewhere, but laboratory confirmation of B burgdorferi infection is lacking in at least 16 cases (70%)
analyzed using available methods. Genetically variable strains of B burgdorferi, alternative Borrelia species, or novel, uncharacterized infectious agents may account for most of the observed EM lesions.

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IV. EUR J CLIN MICROBIOL INFECT DIS: Incidence of Lyme borreliosis in the Wurzburg region of Germany. -------------------------------------------------------------------- AUTHORS: Huppertz HI, Bohme M, Standaert SM, Karch H, Plotkin SA ORGANIZATION: Children's Hospital, University of Wurzburg, Germany. REFERENCE: Eur J Clin Microbiol Infect Dis 1999 Oct;18(10):697-703 ABSTRACT:

To assess the incidence of Lyme borreliosis in Central Europe, a 12-month, prospective, population-based surveillance study of Lyme borreliosis was conducted in the Wurzburg region of central Germany, following an aggressive awareness campaign. The diagnosis of Lyme borreliosis required the presence of (i) erythema migrans (diameter > or =5 cm); (ii) lymphocytoma; or (iii) another specific manifestation including Lyme arthritis, neuroborreliosis, carditis or acrodermatitis chronica atrophicans in conjunction with serological confirmation. A total of 313 cases of Lyme borreliosis was diagnosed, giving an incidence of 111 cases/100000 inhabitants, the highest rates occurring in children and elderly adults living in wooded as opposed to agricultural areas. The incidence in city dwellers and inhabitants of rural areas was not significantly different. Erythema migrans was the only manifestation in 279 (89%) patients. Of the 34 patients with manifestations other than erythema migrans alone, 15 had arthritis, nine neuroborreliosis, six lymphocytoma, four
acrodermatitis chronica atrophicans and one carditis. Children were more likely than adults to have manifestations other than erythema migrans alone. Lyme borreliosis was very common in central Germany, and one of the most frequent bacterial infections. The observation of more cases of arthritis than neuroborreliosis was similar to that in the USA. These results may be representative for many parts of central Europe and suggest the need for development of a vaccine against borreliosis caused by European strains of Borrelia species.

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V. JAMA: Borrelia burgdorferi-specific immune complexes in acute Lyme disease. ------------------------------------------------------------------- AUTHORS: Schutzer SE, Coyle PK, Reid P, Holland B ORGANIZATION: Department of Medicine, University of Medicine and Dentistry of New Jersey-New Jersey Medical School, Newark 07103, USA. [email protected] REFERENCE: JAMA 1999 Nov 24;282(20):1942-6 ABSTRACT:

CONTEXT: Diagnosis of infection with Borrelia burgdorferi, the cause of Lyme disease (LD), has been impeded by the lack of effective assays to detect active infection. OBJECTIVE: To determine whether B. burgdorferi-specific immune complexes are detectable during active infection in LD. DESIGN, SETTING, AND PATIENTS: Cross-sectional analysis of serum samples from 168 patients fulfilling Centers for Disease Control and Prevention surveillance criteria for LD and 145 healthy and other disease controls conducted over 8 years. Tests were performed blinded. MAIN OUTCOME MEASURE: Detection of B. burgdorferi immune complexes by enzyme-linked immunosorbent assay and Western blot. RESULTS: The B. burgdorferi immune complexes were found in 25 of 26 patients with early seronegative erythema migrans (EM) LD; 105 of 107 patients with seropositive EM LD; 6 of 10 patients who were seronegative with culture-positive EM; 0 of 12 patients who were treated and recovered from LD; and 13 of 13 patients with neurologic LD
without EM. Among 147 controls, B. burgdorferi immune complex was found in 0 of 50 healthy individuals; 0 of 40 patients with persistent fatigue; 0 of 7 individuals with frequent tick exposure; and 2 of 50 patients with other diseases. CONCLUSION: These data suggest that B. burgdorferi immune complex formation is a common process in active LD. Analysis of the B. burgdorferi immune complexes by a simple technique has the potential to support or exclude a diagnosis of early as well as active LD infection.

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VI. ABOUT THE LYMENET NEWSLETTER ----------------------------------------------------------------------- For the most current information on LymeNet subscriptions, contributions, and other sources of information on Lyme disease, please refer to: http://newsletter.lymenet.org----------------------------------------------------------------------- To unsubscribe from the LymeNet newsletter, send a message to: [email protected] On the first line of the message, write: unsub lymenet-l ----------------------------------------------------------------------- LymeNet - The Internet Lyme Disease Information Source ----------------------------------------------------------------------- Editor-in-Chief: Marc C. Gabriel <[email protected]> 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 ----------------------------------------------------------------------- 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] -----------------------------------------------------------------------