LymeNet Newsletter Volume 1 Issue 07

Volume: 1
Issue: 07
Date: 05-Apr-93

Table of Contents:

ANNOUNCEMENT: 6th Annual International Conference on Lyme Disease & Related Disorders ANNOUNCEMENT: NJ LD Coalition Trenton Rally NIH PROGRAM ANNOUNCEMENT: Neurological Aspects Of Lyme Disease NEWS: Congress Passes Lyme Disease Awareness Week bill NEWS: Lyme Disease Bacteria Found in Birds ABSTRACT: (J Clin Microbiol) Comparison of Polymerase Chain Reaction with Culture and Serology for Diagnosis of Murine Experimental Lyme Borreliosis ABSTRACT: (Pediatrics) Early Lyme disease: A Flu-like Illness Without Erythema Migrans QUESTION: Research Projects ANSWER: Research Projects (Prevent Lyme Foundation) QUESTION: Prognosis of Patients With Persistent Symptoms BIBLIOGRAPHY: Listing of Several Interesting Publications

Newsletter:

***************************************************************************** * Lyme Disease Electronic Mail Network * * LymeNet Newsletter * ***************************************************************************** Volume 1 - Number 07 - 4/05/93

I. Introduction II. Announcements III. News from the wires IV. Questions 'n' Answers V. Op-Ed Section VI. Partial Bibliography for Further Reading VII. Jargon Index VIII. How to Subscribe, Contribute and Get Back Issues

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

In response to reader requests, I am please to introduce a new section of the newsletter. As of this issue, the LymeNet Newsletter will have a special section dedicated to announcements. This section will contain information on patient and physician events, as well as special news bulletins.

The section will also contain the latest NIH Program Announcements (PAs) and Request for Proposals (RFPs). This information is now publically available on the Internet via the gopher information system. Thanks to Andrew Jendrek for discovering this resource. An abridged version of the most recent PA (on Neurological Aspects of LD) is enclosed below.

Some of the information below is already a bit old (as much as 8 weeks old). In future, the published announcements will be more timely.

-Marc.

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

FROM: The Lyme Disease Foundation, Inc. SUBJECT: 6th Annual International Conference on Lyme Disease & Related Disorders

The Lyme Disease Foundation announces the 1993 International Conference on Lyme Disease & Related Disorders to be held May 5 & 6 at Bally's Park Place in Atlantic City, NJ.

All healthcare professionals are invited to attend this year's International conference. The two-day seminar will cover the newest information on treatment, diagnosis, and research of Lyme Disease and related disorders. Also, new announcements regarding testing, antibiotics, and vaccines will be made. Healthcare professionals that do not make presentations can display their science in poster format. Wednesday, May 5, after the conferences there will be a public forum from 5:00 - 7:00 P.M., where the interested public can express opinions and ask questions. CME credits are being applied for.

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FROM: The Lyme Disease Coalition of New Jersey SUBJECT: May's the Month

The Lyme Disease Coalition of New Jersey is delighted that the Lyme Disease Foundadtion is holding its annual conference in Atlantic City, New Jersey this year during New Jersey's "Lyme Disease Awareness Month." This is a perfect opportinity for all of us to invite our Lyme disease visitors to join us in our many planned activities. Join our families at the Capitol in Trenton on Saturday, May 1st for a candelight vigil. We will light candles of sorrow for those who have not survived this disease and light candles of hope for those who suffer.

For more information -- please write: Lyme Disease Coalition of New Jersey P.O. Box 1438 Jackson, NJ 08527

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SOURCE: The National Institutes of Health (gopher server on: helix.nih.gov) SUBJECT: Program Announcement

NEUROLOGICAL ASPECTS OF LYME DISEASE NIH GUIDE, Volume 22, Number 5, February 5, 1993 PA NUMBER: PA-93-49 P.T. 34; K.W. 0715125, 0715038, 0785055, 0755020, 0765033, 0710070 National Institute of Neurological Disorders and Stroke National Institute of Allergy and Infectious Disease HEALTHY PEOPLE 2000 The Public Health Service (PHS) is committed to achieving the health promotion and disease prevention objectives of "Healthy People 2000," a PHS-led national activity for setting priority areas. This PA, Neurological Aspects of Lyme Disease, is related to the priority area of infectious disease. Potential applicants may obtain a copy of "Healthy People 2000" (Full Report: Stock No. 017-001-00474-0) or "Healthy People 2000" (Summary Report: Stock No. 017-001-00473-1) through the Superintendent of Documents, Government Printing Office, Washington, DC 20402-9325 (telephone 202-783-3238). ELIGIBILITY REQUIREMENTS Applications may be submitted by foreign and domestic institutions, for-profit and non-profit organizations, public and private, such as
universities, colleges, hospitals, laboratories, units of State and local governments, and eligible agencies of the Federal government. Applications from minority institutions, minority individuals, and women are particularly encouraged. Foreign institutions are not eligible for FIRST Independent Research Support and Transition Awards (R29) or Research Program Projects (P01). RESEARCH OBJECTIVES Neurological involvement is a frequent clinical manifestation of Lyme disease. In addition, it has been suggested that the CNS may serve as a reservoir for persistent infection. Central issues about neurological aspects of Lyme disease are unresolved, including the definition of the neurological disease in adults and children in the U.S., the appropriate criteria to use for diagnosis, and the optimal choice and duration of therapy. The pathogenetic mechanisms which produce central and peripheral nervous system syndromes are unknown; in particular, the etiology of persistent post-infectious symptoms and their optimal management is unclear.
Examples of research goals, many of which could be studied in humans as well as animal models and tissue cultures and are appropriate for pursuing an application in response to this PA, include, but are not limited to: o The epidemiology of the neurological aspects of Lyme disease, especially in endemic areas. Identification of neurological syndromes in children and adults that can be reliably attributed to this disorder, including both primary and post-infectious syndromes. o Studies of diagnostic laboratory abnormalities which correlate with the various syndromes, including cerebrospinal fluid, serum, neurophysiological, and neuroimaging testing. o Studies of mechanisms of pathogenesis in development of encephalopathy, encephalomyelitis, and neuropathies. o Characterization of the severity and frequency of cognitive impairments in LNB, and studies of correlated laboratory parameters, and their response to therapy. o Studies of immune-mediated and other pathogenic mechanisms role in injury to the nervous system. This may involve spirochete
interactions with the immune system, and definition of immune and inflammatory abnormalities, including studies of auto-antibodies, cytokines, cellular immune responses, and immune complexes. o Development of effective treatment regimen(s). Optimization of antibiotics, drug dosage, and treatment duration. Development of therapeutic approaches for patients who have persistent neurological symptoms. This could be accomplished by controlled clinical trials. o Studies of the molecular basis for B. burgdorferi neurotropism and the role of strain differences in pathogenesis. o Development of reliable animal models for studies of the nervous system infection and studies of viral latency neuropathogenicity. INQUIRIES Written and telephone inquiries are encouraged. The opportunity to clarify any issues or questions from potential applicants is welcome. Direct inquiries regarding programmatic issues to: Dr. A. P. Kerza-Kwiatecki Division of Demyelinating, Atrophic, and Dementing Disorders National Institute of Neurological Disorders and Stroke
Federal Building, Room 804 Bethesda, MD 20892 Telephone: (301) 496-1431 FAX: (301) 402-2060 Dr. Robert L. Quackenbush Division of Microbiology and Infectious Diseases National Institute of Allergy and Infectious Diseases Solar Building, Room 3A04 Bethesda, MD 20892 Telephone: (301) 496-7728 FAX: (301) 402-2508 AUTHORITY AND REGULATIONS This program is described in the Catalog of Federal Domestic Assistance No. 93.853 and 93.854 and 93.856 - Microbiology and Infectious Disease Research. Awards are made under authorization of the Public Health Service Act, Title IV, Part A (Public Law 78-410, Public Law 97-219, as amended by Public Law 99-158, 42 USC 241 and 285), Public Law 99-500; and Report 99-711 to accompany HR 5233 and administered under PHS grants policies and Federal Regulations 42 CFR 52 and 45 CFR Part 74. This program is not subject to the intergovernmental review requirements of Executive Order 12372 or Health Systems Agency review.

[Editor's note: This Program Announcement has been abridged to save space. To receive the full PA, contact the editor.]

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

HEADLINE: CONGRESSIONAL ACTIVITY Legislative Calendar 103rd Congress, First Session Monday, March 29, 1993; Senate; 59.

Passed SJRes 43, designating the week beginning June 6, 1993, and June 5, 1994, as "Lyme Disease Awareness Week."

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HEADLINE: Lyme disease bacteria found in birds SOURCE: The Xinhua General Overseas News Service DATE: MARCH 24, 1993, WEDNESDAY

A new study by Swedish researchers suggests that birds may provide an important home for the bacteria that cause lyme disease. Reporting their findings in Thursday's _Journal Nature_, the researchers say the study was conducted at the Baltic Sea island of bonden near Sweden, where there are no mammals. As a result, they found the Lyme disease bacteria in a type of tick that bites seabirds, and tests indicated that the bacteria, called borrelia burgdorferi, had infected one bird. Llyme disease, which can cause joint and nervous system damage if untreated, occurs in people when they are infected by the bacteria from infected ticks. Scientists have long believed that mammals, rather than birds, are the main reservoirs for the bacteria among backboned animals.

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HEADLINE: Comparison of polymerase chain reaction with culture and serology for diagnosis of murine experimental Lyme borreliosis. AUTHOR: Pachner AR; Ricalton N; Delaney E REFERENCE: J Clin Microbiol 1993 Feb; 31 (2): 208-14

ABSTRACT: After the intradermal inoculation of mice with Borrelia burgdorferi, the antibody response, culture, and histology of blood and target organs were assessed and compared with results of a nested polymerase chain reaction (PCR) assay. Of 247 specimens of heart, brain, bladder, and blood, the tested concordance between the PCR and culture was 72%. In the 69 instances of discordance, the PCR was positive in 51 and the culture was positive in 18; thus, the PCR was concordant or more sensitive in 93% of the tested organs. In mice infected with 10 spirochetes, serology confirmed by Western blotting (immunoblotting) was more sensitive than either culture or PCR of brain, bladder, or heart specimens. The organs most commonly culture or PCR positive were the heart and bladder; the brain was infected in only 26% of the animals. DNA hybridization was helpful in confirming the PCR product as being specific and, in some cases, in demonstrating a positive product in the face of negative agarose gels. PCR was less sensitive than culture
in detecting the presence of spirochetes in blood specimens, possibly because of the presence of blood inhibitors. We thus found a nested PCR assay, using primers from a genomic sequence, to be a valuable adjunct to serology and culture in the study of murine Lyme borreliosis. The assay confirmed that, after small numbers of spirochetes are injected intradermally, the heart and bladder, and less frequently the brain, are sites of persistence of the spirochetes.

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HEADLINE: Early Lyme disease: a flu-like illness without erythema migrans. AUTHOR: Feder HM Jr; Gerber MA; Krause PJ; Ryan R; Shapiro ED REFERENCE: Pediatrics 1993 Feb; 91 (2): 456-9

ABSTRACT: The existence of a form of early Lyme disease characterized by a flu-like illness without erythema migrans is controversial. To confirm the existence and define the clinical characteristics of the flu-like illness without erythema migrans of localized Lyme disease, the authors studied patients from a Lyme disease endemic area of Connecticut who visited their primary care physicians with an undefined flu-like illness. Patients kept a diary of their symptoms. Acute and convalescent sera were obtained. The diagnosis of Lyme disease was based on the appearance of IgM or IgG antibodies to Borrelia burgdorferi as demonstrated by both enzyme-linked immunosorbent assay and immunoblot assay. Twenty-four untreated patients were studied. In five patients acute serologic evidence of Lyme disease developed. The flu-like illness in these five patients was characterized by fever and fatigue and resolved spontaneously in 5 to 21 days. Symptoms recurred in three of these five patients. The existence of a flu-like
illness without erythema migrans of early Lyme disease has been clearly established. Prospective, controlled studies are needed to better define its incidence, characteristics, and prognosis so that appropriate diagnostic and therapeutic strategies can be developed.

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

In Lymenet Newsletter vol#1 #03, Lloyd E. Miller <[email protected]> writes:

>Is it possible to find out about research projects worthy of financial >support and how one goes about donating to such projects. Including >information of this type in the newsletter periodically would be very >helpful.

Ed. The Prevent Lyme Foundation, Inc., is a "Non-Profit, Tax Exempt Charitable Fundraising Corporation for Scientific Research of Lyme Disease." The Foundation's Founder and Executive Director, Lynn Latchford, incorporated the organization late last year. The PLF is currently raising funds to support several research projects, including entomological, neuropsychiatric, and epidemiological studies. They are also raising funds to investigate laboratory tests and procedures, and pediatric gastroenterology. For more information, contact Lynn at: (201) 292 - 1909 (Inside New Jersey) (800) 479 - 9299 (Outside New Jersey) (201) 292 - 1249 (FAX)

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Sender: James Lebaron (Agency) <[email protected]> Subject: Question

My sister Barbara lives in upstate New York, and asked me to submit the following:

I was first diagnosed with LD in Fall of 1991. I spent a year on and off various oral antibiotics, and finally resorted to 28 days of intravenous Rocephin in September of 1992. I was okay for a couple of months, but my Lyme symptoms have been gradually returning and the exhaustion became so great last week that I went back on oral Doxycycline. However, after questioning my doctor about the course of my illness he said that it is still not clear whether patients such as myself are experiencing a return of the Lyme-causing bacteria or whether it is an auto-immune reaction to something that is not there. My questions are the following:

Is anyone doing research on this? Should we be taking antibiotics or should we be taking arthritis drugs? Can I still be exposed to long-term heart or neurological damage after the treatment I have had or has the damage already been done? What triggers the return of the symptoms (stress, fatigue, physical activity, diet...)? Being a previously active, outdoor person, do I have to alter my lifestyle permanently to avoid a return of the symptoms? Does anyone have a doctor who is helping him or her with the psychological effects of the disease? Are other people reading this going through the same thought processes that I am?

Barbara Kendall Dover Plains, NY

Ed. I can answer the last question. The answer is "yes." Unfortunately, that is the only question that has an easy response. Barbara poses excellent questions, but while we are saturated with opinions on these issues, we have precious little conclusive evidence. Several papers published last year documented culture confirmed treatment failures, so that is possibility. Most Lyme arthritis patients try to find appropriate anti-inflamatory drugs to deal with the pain. Consult your doctor to choose the one that will produce the best effect with the least amount of side effects.

I hear patients ask these questions all the time. I would invite reader feedback on these questions.

V. ***** OP-ED SECTION *****

This section is open to all subscribers who would like to express an opinion.

VI. ***** PARTIAL BIBLIOGRAPHY FOR FURTHER READING *****

Carl Brenner <[email protected]> now offers us more references:

Fallon BA, Nields JA, Burrascano JJ, et al. The Neuropsychiatric Manifestation of Lyme Borreliosis. Psychiatric Quarterly, 1992;63:95-117.

Gamstorp I, Lyme Borreliosis from a Patient's Viewpoint. Scand J Infect Dis - Suppl., 1991;77:15-16.

MacDonald AB. Gestational Lyme Borreliosis: Implications for the Fetus. Rheumatic Disease Clinics of N. America. 1989;15:657-77.

[For a historical persepective, you may wish to read about the first documented case of ECM in the US] Scrimenti RJ. Erythema Chronicum Migrans. Arch Derm. 1970;102:104-5.

VII. ***** 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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