LymeNet Newsletter Volume 2 Issue 05

Volume: 2
Issue: 05
Date: 05-Apr-94

Table of Contents:

I. LYMENET: NY Supreme Court Judge to Insurer: Pay Up II. LDAUS: Legal Information and Implications of NY Case III. EXPERIENTIA: Retention of B. burgdorferi pathogenicity and infectivity after multiple passages in a co-culture system IV. J CLIN NEUROOPHTHALMOL: First isolation of Borrelia burgdorferi from an iris biopsy V. J TROP MED HYG: Prevalence of antibodies to Borrelia burgdorferi, Borrelia parkeri and Borrelia turicatae in human settlements of the Cordillera Province, Bolivia VI. Q&A: Neuroreport article on Alzheimer's and LD (A) VII. Q&A: Exposure risks of Lyme disease (Q) VIII. How to Subscribe, Contribute, and Get Back Issues

Newsletter:

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

IDX# Volume 2 - Number 05 - 4/05/94 IDX# INDEX IDX# IDX# I. LYMENET: NY Supreme Court Judge to Insurer: Pay Up IDX# II. LDAUS: Legal Information and Implications of NY Case IDX# III. EXPERIENTIA: Retention of B. burgdorferi pathogenicity and IDX# infectivity after multiple passages in a co-culture system IDX# IV. J CLIN NEUROOPHTHALMOL: First isolation of Borrelia IDX# burgdorferi from an iris biopsy IDX# V. J TROP MED HYG: Prevalence of antibodies to Borrelia IDX# burgdorferi, Borrelia parkeri and Borrelia turicatae in IDX# human settlements of the Cordillera Province, Bolivia IDX# VI. Q&A: Neuroreport article on Alzheimer's and LD (A) IDX# VII. Q&A: Exposure risks of Lyme disease (Q) IDX# VIII. How to Subscribe, Contribute, and Get Back Issues IDX#

QUOTE OF THE WEEK:

"It is a landmark decision... I've had lawyers from all over the country call me, asking about this case... This is a great victory for patients."

-- Dr. Perry Orens (see section I)

I. LYMENET: NY Supreme Court Judge to Insurer: Pay Up -------------------------------------------------------- SOURCE: LymeNet News DATE: March 30, 1994 BYLINE: By Marc Gabriel

A New York State Supreme Court Judge ordered Empire Blue Cross and Blue Shield Inc. and Metropolitan Life Insurance Co. to pay for long-term IV antibiotic treatment for a policy holder suffering from chronic LD. Justice Peter Cohalan in Riverhead, NY, made the decision on March 18 after two days of testimony by experts from both sides of the LD debate. Cohalan also predicted that, if this case goes to trial, the patient would win.

The plaintiff, Joanne MacIntyre, 53, has been suffering from LD for four years. She has undergone two previous treatment regimens, but relapsed after the treatments ended, according to her physician, Dr. Perry Orens of Great Neck, NY.

Orens recommended up to an additional 12 weeks of treatment, but MacIntyre's insurer refused to pay for the full course, claiming the treatment was not "medically necessary." Met Life's Medical Director took the stand in this case, but was quickly discredited by the prosecuting attorney, L. Susan Slavin, according to Orens. The director admitted that he knew little about the case and had "possibly" seen 2 other cases of LD before.

Dr. Raymond Dattwyler, Director of the Lyme Disease Center at University Hospital, Stony Brook, was also asked to testify. When asked by Slavin if there was such a thing as "chronic Lyme disease," Dattwyler answered in the affirmative.

Orens testified that he believes MacIntyre has LD and that additional treatment is required. His testimony was corroborated by Dr. Joseph J. Burrascano of East Hampton, NY.

A graduate of UCLA School of Medicine, Orens is a practicing internist and cardiologist in Great Neck. He is also a Clinical Assistant Professor of Medicine and lecturer at the Cornell Medical School.

He is currently working with Drs. Paul Levine and Jean-Carlo Pizza on a treatment for Chronic Fatigue Immune Dysfunction Syndrome. Levine is a Senior Clinical Investigator in the Viral Epidemiology Branch of the NIH's National Cancer Institute. Pizza is a professor of immunology at the University of Bologna Medical School in Italy. The treatment is in the 3rd and final phase of a blind study.

Orens is also working on an extensive article on chronic LD.

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II. LDAUS: Legal Information and Implications of NY Case ---------------------------------------------------------- SOURCE: Lyme Disease Association of the United States DATE: April 1, 1994 BYLINE: By Janice Beers, J.D.

Joanne MacIntyre and William MacIntyre vs. Empire Blue Cross and Blue Shield and Metropolitan Life Insurance Company, Index No. 94-2712, Supreme Court of the State of New York, County of Suffolk, March 18, 1994 (not yet journalized).

BRIEF STATEMENT OF IMPORTANCE: For the first time, an injunction has been awarded in a state court in a case involving chronic Lyme disease. The treatment prescribed by the treating physician was up to twelve weeks of intravenous (IV) antibiotics. That length of treatment was refused by the insurance company as "medically unnecessary." At the hearing for a preliminary injunction, the two schools of thought on how to treat chronic Lyme were pitted squarely against each other. The judge issued a preliminary injunction forbidding the insurance company to deny payment for the long-term treatment prescribed by the treating physician for chronic Lyme disease. This case "makes law" in New York state; it can be cited in other cases as precedent. In cases in other states it can be cited as persuasive.

FACTS: Joanne MacIntyre did not know she was infected until she developed symptoms of disseminated Lyme disease several years ago. She began having knee pains, headaches, shortness of breath, etc. She had IV treatment for LD twice. Most symptoms abated with six weeks of IV treatment, but they came back. After ten weeks of IV treatment the disease went into remission for a year. She relapsed with even more symptoms. Her treating physician prescribed up to an additional twelve weeks of treatment which costs about $10,000 per month.

The insurance company, known as the Empire plan, paid for the first two IV treatments, but it would only approve only six weeks for the third treatment. Metropolitan Life Insurance Company (hereinafter Met Life), the first level decision maker, refused to pay, saying that a review of the medical literature showed that it was not "medically necessary." The MacIntyres sued the insurance companies.

CASE: The case was brought in the Supreme Court of New York, Suffolk County on Long Island. This is the trial court level in New York. It went to a hearing for the first remedy sought, a preliminary injunction against the insurance companies. The hearing was held before a judge (no jury). It lasted for two days and produced about 600 pages of testimony.

DECISION: The judge decided for the MacIntyres and issued a preliminary injunction. As a result, the insurance company is required to pay for the additional long-term treatment. This decision stands unless it is overturned on appeal or at trial which will probably be held in two or three years.

The judge decided three things: 1. Mrs. MacIntyre would suffer irreparable harm if the injunction was not granted and treatment provided. 2. He "balanced the equities." He decided that the harm to Mrs. MacIntyre if the injunction was not granted would be greater than the harm to the insurance company. 3. The judge decided that the MacIntyres *will probably win* on the merits when the case goes to trial.

Upon deciding these requirements for a preliminary injunction were met, he issued one requiring the insurance company to pay until the case is tried.

ATTORNEY FOR THE MACINTYRES: L. Susan Slavin conducted the case for the MacIntyres. She is the nationally known litigator who won breast cancer cases against insurance companies at a time when they were denying chemotherapy on the grounds that it was experimental. She founded the Breast Cancer Legal Advocacy Training project, now a project of the American Bar Association. She has never lost a case against insurance companies.

The insurers have announced that they will appeal the ruling. A defense fund will be established shortly to pay for the MacIntyres' legal bills.

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III. EXPERIENTIA: Retention of B. burgdorferi pathogenicity and infectivity after multiple passages in a co-culture system. ----------------------------------------------------------------- AUTHOR: Guner ES REFERENCE: Experientia 1994 Jan 15;50(1):54-9 ORGANIZATION: Department of Entomology, Rutgers The State University of New Jersey, New Brunswick 08903. ABSTRACT:

In vitro cultivation of B. burgdorferi in BSK medium results in the loss of infectivity and pathogenicity after repeated passages. To prevent this loss, a feeder layer of tibio-tarsal joint tissue derived from newborn LEW/N rats was grown on Cytodex 3 microcarriers in ESG (formerly BSKE), a novel medium developed to support the growth of both the feeder layer and B. burgdorferi. A new pathogenic isolate (FNJ) and a high passage, non-pathogenic strain (TNJ) grew well in this co-culture system with high yields of viable organism. FNJ caused no growth inhibition or visible damage to the cells in the feeder layer. FNJ remained arthritogenic for newborn LEW/N rats after 22 passages in the co-culture system, but lost its arthritogenicity after 7 passages when cultured in BSK medium. This borrelia-mammalian tissue co-culture technique presents an experimental system to study the long term interactions of B. burgdorferi with the infected host tissues in vitro, as well as facilitate diagnostic tests and vaccine development.

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IV. J CLIN NEUROOPHTHALMOL: First isolation of Borrelia burgdorferi from an iris biopsy. --------------------------------------------------------------------- AUTHORS: Preac-Mursic V, Pfister HW, Spiegel H, Burk R, Wilske B, Reinhardt S, Bohmer R ORGANIZATION: Max v. Pettenkofer Institut fur Hygiene u. Medizinische Mikrobiologie, LM-Universitat Munchen, Germany. ABSTRACT:

The persistence of Borrelia burgdorferi in six patients is described. Borrelia burgdorferi has been cultivated from iris biopsy, skin biopsy, and cerebrospinal fluid also after antibiotic therapy for Lyme borreliosis. Lyme Serology: IgG antibodies to B. burgdorferi were positive, IgM negative in four patients; in two patients both IgM and IgG were negative. Antibiotic therapy may abrogate the antibody response to the infection as shown by our results. Patients may have subclinical or clinical disease without diagnostic antibody titers. Persistence of B. burgdorferi cannot be excluded when the serum is negative for antibodies against it.

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V. J TROP MED HYG: Prevalence of antibodies to Borrelia burgdorferi, Borrelia parkeri and Borrelia turicatae in human settlements of the Cordillera Province, Bolivia. -------------------------------------------------------------------- AUTHORS: Ciceroni L, Bartoloni A, Guglielmetti P, Paradisi F, Barahona HG, Roselli M, Ciarrocchi S, Cacciapuoti B REFERENCE: J Trop Med Hyg 1994 Feb;97(1):13-7 ORGANIZATION: Istituto Superiore di Sanita, Laboratorio di Batteriologia e Micologia Medica, Roma, Italy. ABSTRACT:

A seroepidemiological study to determine the prevalence of human Lyme borreliosis and tick-borne relapsing fever was carried out in three communities (Camiri, Boyuibe and Gutierrez) of the Cordillera Province, Santa Cruz Department, south-eastern Bolivia. Anti-B. burgdorferi, anti-B. turicatae and anti-B. parkeri antibodies, tested by the indirect immunofluorescent assay (IFA), were detected in 10.8, 16.1 and 8.2% of the serum samples tested, and confirmed by IFA-ABS in 1.3, 1.3 and 1.0%, respectively. This is the first report of the presence of Lyme borreliosis and tick-borne relapsing fever in Bolivia. For Lyme borreliosis these findings represent a further datum to support its existence in South America.

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VI. Q&A: Neuroreport article on Alzheimer's and LD (A) -------------------------------------------------------- Sender: Martina Ziska, MD, Medical Director, The Lyme Disease Foundation (via FAX)

Re: Vol #2 Number 03 Section V

There have been no further studies on the possible connection between Alzheimer's disease and Lyme borreliosis since the mentioned J. Miklossy report. However, there have been two prior reports by Alan MacDonald published in 1987 and 1988, which I want to bring to your attention:

Alan B. MacDonald, MD, and Joseph M. Miranda, MD, Concurrent neocortical borreliosis and Alzheimer's disease. Hum Pathology 18:759-761, 1987.

Alan B. MacDonald, MD, Concurrent neocortical borreliosis and Alzheimer's disease. Demonstration of a spirochetal cyst form, Lyme Disease and Related Disorders, Volume 539 of the Annals of the NY Acad of Sci, August 26, 1988.

We do not have to go too far to find interesting and important data. It is only a question of "wanting to remember."

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VII. Q&A: Exposure risks of Lyme disease (Q) --------------------------------------------- Sender: Steve Tobin <[email protected]>

I have been reading this newsletter for about 3 months, as well as several back issues, and have become concerned as to the risk involved in spending extended periods in the woods. I have been led to believe Lyme disease was pretty much under control through the use of antibiotics, and that I should not be overly concerned. I think this attitude is pretty widespread. From what I have read in this newsletter, this is not the case.

As a BSA Scoutmaster I am particularly concerned. My boys spend a week at a camp in north-central Wisconsin, and several will be working for an additional 4 week period at this camp. This area is known to have a high incidence rate, and the camp director made the statement last year that they have several known case of Lyme disease each year. The camp and troop leadership instruct on and advise the use of repellents containing DEET, but have not been overly concerned about enforcing it's use.

We routinely find 'regular' dog ticks on the boys, but have only found 1 deer tick so far. The boy's parents immediately took him to the doctor, who administered a 2-week course of antibiotics and told them not to worry.

I obviously should be concerned about this, but my questions are: 1. How concerned should we be about risking infection? To the point of staying home? Having routine 'tick inspection' line-ups? What is a reasonable policy relative to the danger?

2. If exposure to a deer tick is detected immediately, what is the proper course of treatment, and how effective will it be in preventing the on-set of Lyme disease?

I thank you for any help you can give me on this.

[Editor's Note: Please send your responses to the Questions and Answers features to [email protected] or FAX number 908-789-0028.]

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