LymeNet Newsletter Volume 1 Issue 13

Volume: 1
Issue: 13
Date: 15-Jun-93

Table of Contents:

NEWS: CDC Reporting criteria SPECIAL SECTION: LDF Conference Summary - part 2 QUESTION: Optic Neuritis and LD

Newsletter:

***************************************************************************** * Lyme Disease Electronic Mail Network * * LymeNet Newsletter * ***************************************************************************** Volume 1 - Number 13 - 6/15/93

I. Introduction II. Announcements III. News from the wires IV. Questions 'n' Answers V. Jargon Index VI. How to Subscribe, Contribute and Get Back Issues

I. ***** INTRODUCTION *****

We begin this issue with an advisory. As many of you may know, the CDC is planning to restrict its already restrictive reporting definition. The CDC apparently views this as a necessary measure to prevent "overdiagnosis," while others view this as a blatant attempt to distort statistics. Whatever the outcome, we will bring you the results of this action as soon as they become available. Dave Dalby explains below.

In addition, Dr. Lloyd Miller presents part two of his notes from the LDF Conference in Atlantic City last month. We also have an update from Connaught Labs on the progress of their experimental LD vaccine.

Finally, we have a story that everyone must read in our Questions and Answers section. Dave's story is, unfortunately, very common today. Please read it.

-Marc.

FACTIOD: According to the Hartford Courant (6/3/93), 1.3% of the population of Lyme, CT were given a diagnosis of LD (using CDC criteria) in 1992 alone.

II. ***** ANNOUNCEMENTS *****

From: "Dave W. Dalby" <[email protected]> Subject: News Update: CDC Reporting criteria. Did you know that [on June 17], a CDC panel will be voting on a proposed change in the Lyme disease reporting criteria/definition? A meeting was held in Atlanta this March in which a proposal was presented that would restrict the rash to that of a bulls-eye only. Also mentioned was that at least one late manifestation and laboratory evidence of infection be present.

At the same time, a panel of physicians advised the CDC to adopt a broader definition, opposing the suggested more stringent requirements. I would encourage those concerned to express their opinion on this issue as soon as possible. Some groups have been targeting their state and federal representatives and state health commissioners and epidemiologist as well as to William L. Roper, MD, Director Centers for Disease Control 600 Clifton Road NE, Building 1 Atlanta, GA, 30333.

Also mentioned was Ruth Berkelman, MD, Deputy Director, NCID, at the CDC.

III. ***** NEWS FROM THE WIRES ******

Sender: "Lloyd E. Miller,DVM" <[email protected]> Subject: 6th Annual Lyme disease Conference notes

NOTES AND OTHER INFORMATION FROM THE 6th ANNUAL LYME DISEASE SCIENTIFIC CONFERENCE -- ATLANTIC CITY, NEW JERSEY -- MAY 5th-6th, 1993 SECOND SET OF NOTES

Every effort has been made to be accurate as possible - corrections, additions, clarifications and comments on anything in the notes are welcome.

Items bracketed by >*< are my own comments - LEM >*<

The title of the paper is given first followed by the primary authors name followed by excerpts from the authors abstract and notes taken during his/her presentation.

Lloyd E. Miller,DVM May 1993 -----------------------------------------------------------------------------

Psychiatric aspects of Lyme disease in adults & children: New research Brian Fallon, MD, MPH, Med

1. Lyme disease patients feel like their body is committing suicide on them without permission - they feel their personality and spirit are destroyed. 2. Intense sensitivity to light and sound are common. 3. Lyme disease can cause personality disorder. 4. 90% of chronic Lyme disease patients have encephalopathy . Symptoms include memory loss, depression, sleep disturbance, irritability, difficulty finding words. 5. Lyme disease patients may show subtle impairment in psychological tests.

>*< The reader is referred to the following reference for an excellent review of the topic Fallon BA, Nields JA et al: The neuropsychiatric manifestations of Lyme borreliosis. Psychiatric Quarterly 1992; 63(1): 95-117. >*< -----------------------------------------------------------------------------

Lyme disease in the Midwest Ed Masters, MD

Dr. Masters presented good evidence that Lyme disease occurs in Missouri. He stated that the Dr. Oliver's tick research has shown that the right ticks for transmission do exist in the South. The spirochete he is finding stains somewhat differently and is more difficult to culture. He feels that the culture requirements may be different than reference strains. According to the CDC, they will not declare that these cases in Missouri are Lyme disease until the organism can be cultured and characterized. Which reinforces Dr. Masters' statement that "Lyme disease is a clinical diagnosis - until you make it" -----------------------------------------------------------------------------

Persistent infection despite extensive treatment Kenneth B. Liegner

Dr. Liegner described a case which demonstrated the difficulties that doctors and patients are having in getting treatment for Lyme disease when dealing with a third party who is determining treatment or in the case of insurance companies what they are willing to pay for. Several importance points were made: A. In some cases nurses and others who are less qualified than the physician are determining patient care. B. Third parties are determining treatment (or denying treatment) in spite of the fact that they have no personal contact with the patients. C. Third parties are determining treatment in spite of the fact that they have no personal responsibility for the patients. D. In order for a physician to advocate for a patient he feels is being mistreated by the system, the physician must spent an extraordinary amount of time and effort that he could be spending caring for other
patients. E. It is suggested that major injustices are being perpetrated against Lyme disease patients.

Important questions arise: A. Is the third party practicing medicine without establishing a doctor-patient relationship? B. Is the third party then rendering their own diagnosis? C. In the event of an adverse outcome resulting from this relationship and misdiagnosis (by the third party) is the third party ultimately liable

>*< Dr. Liegner in his presentation appeared to be more convinced than ever that chronic Lyme disease is the result of persistent infection. In fact, he said quite clearly that there should be no controversy - that indisputable evidence of chronic persistent infection has been presented and published in the peer reviewed literature. His talk underlined the fact that the presentation of Lyme disease is extremely variable. He showed that patient treatment is being determined by persons who have incomplete information about a patient, who lack important knowledge about the disease and who can decide a patients fate based on personal belief rather than medical evidence and can do so with impunity. The particular case presented made very clear that the diagnosis of Lyme disease, especially in the chronic recurrent case, requires in many cases the use of investigational techniques. These techniques are not readily available to the average patient. I believe that most physicians are unaware of the various investigational tests that can be
used to help clinch the diagnosis. Even if he is aware his access to them is very limited. It was clear from this presentation, and other presentations at the conference, that before one can say a patient does not have Lyme disease when the clinical evidence points to the disease, and no other diagnosis can be offered, requires the use of several of the various tests which in many cases, unfortunately, are only available on an investigational basis. It may be that until the "gold standard" test is developed that when laboratory confirmation is required either by the attending physician or a third party that a well orchestrated battery of tests (culture, biopsy, PCR, ELISA, neutralizing antibody, western blot, antigen, immune complex and so forth) will be necessary in order to establish the presence of the elusive Borrelia burgdorferi and it's by- products. >*< -----------------------------------------------------------------------------

B cell mitogen activity of Borrelia burgdorferi surface components William M. Whitmire

Results of studies show that like OspA and OspB OspC is also mitogenic. Mitogenic proteins may contribute to the pathogenesis of Lyme disease. Concern was raised about the possibility that vaccines containing these proteins would produce adverse or undesirable immune system effects. ----------------------------------------------------------------------------- Sub-unit vaccine development - new discoveries Charles S. Pavia, PhD

The impact of the adjuvants QS-21 and aluminum hydroxide on the immunogenicity of recombinant outer surface proteins A and B of Borrelia were investigated. Antisera to OspB formulated with either adjuvant had low or no borreliacidal activity against four strains of Bb. OspA adjuvanted with QS-21 was highly borreliacidal. OspA was superior to OspB and QS-21 was superior to aluminum hydroxide at eliciting functional antibody response. The vaccine containing OspA and OspB formulated with QS-21 was protective in mice against infection with 10 infectious spirochetes of strains B31 and CA-2-87. This formulation may be a promising vaccine candidate, and QS-21 may serve as a critical component in the subunit vaccine against Lyme disease. >*<> See previous comment regarding Osp proteins and concern over adverse effects.>*< ----------------------------------------------------------------------------- Epizootiology of Lyme Borreliosis in the Southeast
James H. Oliver, Phd Dr. Oliver, as he stated it, was told "as if they were law" certain facts about Lyme disease in the South. He turned these "laws" around and made them into hypotheses and then set about to prove them. 1. Ixodes dammini and Ixodes scapularis are not the same. DISPROVEN 2. Ix. scapularis prefer lizards - Ix. dammini prefer mice. When given a choice Ix. scapularis preferred mice> lizard> chicken. When given a choice Ix. scapularis nymphs slightly favored mice. DISPROVEN 3. Lizards are not competent reservoirs -- "jury still out" -- research in progress. 4. There is no evidence of Bb in non-human animals in the Southeast. Bb has been isolated from cotton mouse and cotton rat in both Georgia and Florida. DISPROVEN 5. There is no proven case of human Lyme disease in the south. DISPROVEN
Commenting about Amblyomma americanum (the lone star tick) he stated that Bb in molted nymphs disappear or become less pathogenic as time from molt progresses. He doubts that there is a difference in the rates of feeding on humans of Ix. dammini and Ix. scapularis - which he refers to as the Northern and Southern populations of Ix. scapularis respectively. >*<> It would be very nice if there were more open-minded true scientists like Dr. Oliver >*<

=====*=====

TILE: First Lyme Disease Vaccine in Phase I Clinical Trials DATE: 5/21/93 SOURCE: Biotechoonogy News, 13 (13), p3

SUMMARY: Connaught Labs has two different versions of a Lyme disease vaccine which appear to be safe and elicit antibodies. One version is based on en E. coli produced recombinant antigen from the outer surface protein of Borrelia burgdorferi. The same antigen is combined with BCG to make other versions of the vaccine. Phase I trials were conducted in 36 healthy patients at the University of New Mexico School of Medicine. Connaught will extend the trial this summer to characterize the immune response seen in patients, and hopes to market the product within 4 years. Lyme disease is second only to AIDS as the fastest growing infectious disease in the US. About 50,000 cases have been reported since 1982, but the Lyme Disease Foundation (Tolland, CT) estimates that there are 500,000 cases of infection in the US.

For more information, contact: Linda Mayer Connaught Laboratories, Inc. Rt 611, P.O. Box 187 Swiftwater, PA 18370 VOICE: 717-839-4340 FAX: 717-839-7235

IV. ***** QUESTIONS 'N' ANSWERS *****

Sender: Dave McArthur <[email protected]> Subject: contribution to the Lymenet Newsletter

In March of 1987 I went for a hike, wearing shorts and a tee-shirt, climbing to the top of McPhearson Peak in Santa Barbara country (California). The trail was tick infested and several times during the hike I had to stop and remove ticks from my clothes and body. About two weeks later I noticed a circular red rash on my right thigh, approximately 6 inches in diameter. I received no medical attention for the rash and it subsided in a few weeks.

In October 1988 I began experiencing a mild sensory numbness in both legs. It was most pronounced in my feet but extended into both thighs. After approximately a week it lessened, but has never completely subsided to this day. There has never been any motor impairment. I consulted both an internist and neurologist at Kaiser Permanente, but no definitive diagnosis was made. The neurologist conjectured that it might be related to a back problem -- I mildly herniated my fifth lumbar disk in May 1990. In July 1991 I began to lose vision in my left eye. It rapidly degraded to shadow vision within a week. An ophthalmologist at Kaiser diagnosed it as optic neuritis. Multiple sclerosis was considered a possible cause. After a subsequent bout of optic neuritis (also in the left eye) in December 1991 I had an MRI and lumbar puncture to test for MS. The MRI indicated possible MS; the lumbar puncture was negative for MS.

The neurologist refused my request to test my CSF for Lyme disease. He discounted Lyme disease as a cause for my symptoms, arguing both that Lyme disease is almost non-existent in Southern California, and that optic neuritis is not a documented neurological manifestation of Lyme disease.

In August of 1992 I had two independent blood tests for Lyme disease. In the first, the Western Blot test was negative, but the IgG by IFA was positive with a titer of 1:512. The second was positive by the EIA Assay for IgG antibody. I began taking doxycycline (100mg 3 times daily) in August 1992, and continued for one month. This treatment was not prescribed by Kaiser, but by one of the independent physicians. Finally, in April 1993, at Kaiser, I underwent a second lumbar puncture, this time testing for Lyme disease. It was negative.

Since my second bout of optic neuritis, in December 1991, I have had no additional symptoms that are associated with either MS or Lyme disease -- no chronic fatigue, cardiac involvement, arthritis, or behavior changes. I remain physically as active as I have always been.

My plan at this time (much to the relief of my doctors at Kaiser) is to forget about Lyme disease as a possible explanation for my symptoms, both on the grounds that it is unlikely (given my history and mixed test results) and because late-stage disseminated Lyme disease (which is what I must have if I have Lyme disease at all) is very unlikely to respond to treatments. I will continue to monitor the Lyme disease and MS literature, however. And, should I get the opportunity, I may consider undergoing one of the new MS treatments that are now being piloted.

I would be grateful for any comments on my history of symptoms and on my plan. Thanks in advance for your time and consideration. =====*=====

Sender: [email protected] (Denis Knowles) Subject: narcolepsy

Does anyone have knowledge of a narcolepsy maillist, conference, or BBD? If so, please send info to me or directly to Marc at: [email protected]

V. ***** JARGON INDEX *****

Bb - Borrelia burgdorferi - The scientific name for the LD bacterium. CDC - Centers for Disease Control - Federal agency in charge of tracking diseases and programs to prevent them. CNS - Central Nervous System. ELISA - Enzyme-linked Immunosorbent Assays - Common antibody test EM - Erythema Migrans - The name of the "bull's eye" rash that appears in ~60% of the patients early in the infection. IFA - Indirect Fluorescent Antibody - Common antibody test. LD - Common abbreviation for Lyme Disease. NIH - National Institutes of Health - Federal agency that conducts medical research and issues grants to research interests. PCR - Polymerase Chain Reaction - A new test that detects the DNA sequence of the microbe in question. Currently being tested for use in detecting LD, TB, and AIDS. Spirochete - The LD bacterium. It's given this name due to it's spiral shape. Western Blot - A more precise antibody test.

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