Table of Contents:
ANNOUNCEMENT: 6th Annual International Conference on Lyme Disease &
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
QUESTION: Research Projects
ANSWER: Research Projects (Prevent Lyme Foundation)
QUESTION: Prognosis of Patients With Persistent Symptoms
BIBLIOGRAPHY: Listing of Several Interesting Publications
* Lyme Disease Electronic Mail Network *
* LymeNet Newsletter *
Volume 1 - Number 07 - 4/05/93
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
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.
II. ***** ANNOUNCEMENTS *****
FROM: The Lyme Disease Foundation, Inc.
SUBJECT: 6th Annual International Conference on Lyme Disease & Related
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
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
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).
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).
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
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.
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."
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
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
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
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
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]>
>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
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)
Sender: James Lebaron (Agency) <[email protected]>
My sister Barbara lives in upstate New York, and asked me to submit the
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?
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
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
Western Blot - A more precise antibody test.
VIII. ***** HOW TO SUBSCRIBE, CONTRIBUTE AND GET BACK ISSUES *****
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subscribe LymeNet-L <Your Real Name>
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All are encouraged to submit questions, news items, announcements, and
Send a memo to [email protected]
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example: get LymeNet-L/Newsletters 1-01 (will get vol#1, issue#01)
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]>
Advisors: Carol-Jane Stolow, Director
William S. Stolow, President
The Lyme Disease Network of New Jersey (908-390-5027)
Chief Proofreader: Ed Mackey <[email protected]>
WHEN COMMENTS ARE PRESENTED WITH AN ATTRIBUTION, THEY DO NOT NECESSARILY
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