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Volume: 1
Issue: 03
Date: 18-Feb-93

Table of Contents:

ANNOUNCEMENT: (LD Network of NJ) - Expansion to National Organization
QUESTION: Pain Syndromes in LD
ANSWER: How Accurate are LD Tests?
QUESTION: Dogs and Ticks
ABSTRACT: Use of Roxithromycin in LD
BIBLIOGRAPHY: Listing of several interesting publications


*                  Lyme Disease Electronic Mail Network                     *
*                          LymeNet Newsletter                               *
                     Volume 1 - Number 03 - 2/18/93

I.   Introduction
II.  News from the Wires
III. Questions 'n' Answers
IV.  Partial Bibliography for Further Reading
V.   Jargon Index
VI.  How to Subscribe, Contribute and Get Back Issues

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

  I would like to hear your opinions with regard to the evolution of this
group.  Some users would like to have more "free-flowing" discussions, as
opposed to having all posts filtered by me.  The drawback to this,
however, is the increase in net "space" it would occupy.  Is this approach
warranted?  Do you think there would be enough discussion to make it worth
while?  How about the idea of a Usenet group?
  As for the newsletter, would you prefer a shorter issues more frequently?
Or perhaps a once-per-month roundup?
  Please send any comments directly to me at  [email protected] .
  The bulk of this issue consists of questions and answers.  The only News
is from the President of the Lyme Disease Network of New Jersey in East
Brunswick, NJ.
  I was not able to include the material that arrived in the past 24 hours.
Those materials will be enclosed in the next issue.  Sorry for the delay!




As we enter a new year, The Lyme Disease Network will undertake its biggest
and most important project since it was founded in 1991.  We are  planning to
expand the network to a national service organization.  Our mission remains
the same as it has always been:  "The Lyme Disease Network is an organized,
proactive group, dedicated to raising the standard of care for Lyme Disease
through education, research, and policy development."   By using a  
participatory committee structure we will develop a series of action plans
which will accomplish the following goals:

* Coordinate and disseminate educational materials on prevention, awareness,
 treatment protocols, and support group organizational guidance.
* Develop a Positive Physician Alliance.  

Currently, there is a clear need across this country for an organized patient
advocacy network.  There exists today a fragmented community of Lyme Disease
support groups.  These groups tend to "do their own thing" and often function

It is time we, The Lyme Community, join forces to fight this disease and
represent ourselves as a determined group, with a clear mission.  

Funding for this project will come from several types of sources.  We
are seeking a grant from several institutions which specialize in funding
non-profits that are health oriented.  There are approximately 40 commercial
businesses who have in the past donated funds in our support.  They are
committed to our cause and have indicated that they will continue to support
us financially.  The public has funded the Network through hundreds of
donations. This comprises nearly 40% of our total income.

The Lyme Disease Network needs your help, please take the times to send what
you can afford. It's tax deductible, & will be used to directly help the
victims and potential victims of Lyme Disease.  

LDN President, Bill Stolow


Sender: "Lloyd E. Miller" <[email protected]>
Subject: Pain - questions

Lyme disease causes severe pain which is, at times, extremely debilitating.
This pain appears to be quite difficult to treat. The character of this pain
varies from patient to patient and often varies within the same patient. I
have heard it described as joint pain (with or without swelling or redness),
stabbing pain ("feels like skewers are being forced through the joints"),
tingling and burning sensations in arms, legs, hands and feet ("feel like I'm
standing on burning hot sand"), burning sensation just under the skin (like a
deep sun burn), muscle pain (cramping and aching), pain around the joints,
shooting pains ("feel like someone is constantly hitting my funny bone"),
headaches, neck pain, chest pain simulating heart pain. The pain varies in
intensity and seems to follow a cyclical pattern.  It would appear that since
these pain syndromes are relatively unresponsive to currently  available pain
medications (NISADS, opiates, steroids) that the pathogenesis may be somewhat
different than in other disease states.


1. Has anyone identified the pathogenic mechanisms of these pain syndromes?

2. Is anyone currently researching the mechanisms of these pain syndromes?

3. Has anyone found any effective means to control the pain? Through the use
of medications? Other treatment strategies?

4. Why aren't current medications more effective?

5. The pain of fibromyalgia, chronic fatigue syndrome and Lyme appear to be
very similar. Is there a common link somewhere?


Sender: Wojciech Basiak <[email protected]>
Subject: question about babesiasis

I'm looking for any information about serological tests for babesiasis.
Especially I'm interested in tests available in Europe. Maybe someone can
share with me his experience how accurate are this tests. I am a physician
working in Institute of Infectious and Parasitic Diseases in Warsaw. I
intend to investigate anti-babesia antibodies in people with high titres of
anti-Borrelia antibodies in serum. In Poland no anti-babesia tests are
Thanks in advance


Sender: "Lloyd E. Miller" <[email protected]>
Subject: suggestions

A couple of suggestions:
  1. In addition to support group meetings how about including a calendar of
and information about medical and scientific meetings devoted to Lyme disease
or having relevance to Lyme?

Ed.- Yes.  In the future, I will be able to provide this information.  It's
just a matter of time until I can contact the people who can keep me up
to date on the latest medical and patient gatherings.

2.  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.
(I wrote the LBF a couple months ago for this information and have had no
reply. I am especially interested in knowing what research is being conducted
in the areas of pathogenesis and treatment of chronic Lyme disease.)

Ed.- I'll work on this query.  Thanks for the suggestion.


Sender: "Lloyd E. Miller" <[email protected]>
Subject: question response - accuracy of Lyme tests

Such a simple question - not a simple answer. The best response I've heard to
date is that the accuracy of any test is difficult to interpret since there
is, as yet, no "gold standard test". All the tests have their good and bad
points. Everyone who has developed a test feels his is the best. The following
three references deal with the tests and their problems.

1. Luger SW,Krauss E: Serologic tests for Lyme disease. Archives of Internal
Medicine 1990;150:761-763.

2. Schwarthz BS,Goldstein MD et al: Antibody testing in Lyme disease. Journal
of the American Medical Association 1989;262(24):3431-3434.

3. Bakken LL,Case KL,Callister SM et al: Performance of 45 laboratories
participating in a proficiency testing program for Lyme disease serology.
Journal of the American Medical Association 1992;268(7): 891-5.

I have attended several conferences; following are excerpts from notes I took
- I believe them to be accurate.

Lyme Disease Teaching Day - Poughkeepsie, NY - October 17, 1990

Dr Marc G. Golightly:
  stated that the IFA test is very good - *emphasized if done properly*. He
also said the Elisa antigens are a problem - they aren't standardized.
Proficiency of laboratory workers is a big problem with testing. Commercial
Elisa tests very poor in picking up early (low antibody) LD; <40% picked up
positives. They are better with neg results and high positives. PCR (DNA
probe) clearly a research tool currently. Urine antigen: research oriented.
Shouldn't be used clinically in his opinion. He felt that Western blot was
still a research procedure: worse than IFA in interpretation. Interpretation a
huge problem - many antigens common to other organisms. Lack of
standardization - *no better than good Elisa test*. "T" cell test rarely
useful. I got the impression he felt that the IFA and Elisa tests were equally
good when performed by experienced technicians.

John Drulle, M.D. - urine antigen testing in Lyme disease
 Urine antigen levels inconsistent from day to day. Often increased on the
2nd and 10th days following the initiation of antibiotic therapy. The daily
fluctuations are a problem in using the test. Source of antigen is not known.
*Not a test for cure*  At that time he stated that 3M had a 2nd generation
test on line: specificity 99%; sensitivity 80-90%

Dr. Joseph Burrascano Jr. - Albany New York  --  June 5, 1991
  Stated that 40% of Lyme tests are falsely negative and 1% are falsely
positive. (I believe he was referring to IFA and ELISA tests then available.)

Lyme Borreliosis Foundation Conference  - Stamford, CT. -- April 1992

Dr. Burrascano on Investigative Work with Antigen Capture Test:
  High specificity and sensitivity. May possibly be useful as indicator for
progression of disease or of cure. At the time of the meeting the test was not
available commercially and doesn't know when/if it will be.
  Reference: Dorward DW,Schwan TG et al: Immune Capture and Detection of
Borrelia Burgdorferi Antigens in Urine, Blood, or tissues from Infected Ticks
Mice, Dogs, and Humans. Journal of Clinical Microbiology 1991;29(6):1162-1170.

Dr. Persing on PCR testing
  Major problem is false positive tests due to contamination of laboratories
with DNA. Requires special precautions to avoid the problem. False negatives
do occur. Urine unreliable for PCR testing: degradation products interfere
with test.

Dr. Liegner:
  Western Blot is *not* diagnostic.

Fifth International Meeting - Washington - May 1992

Comments by Dr.John J. Halperin:
 Culture 10% sensitive (i.e. culture as means of diagnosis fails 90% of the
time). Culture 100% specific.
Positive serum or intrathecal antibody *with symptoms* 95% sensitive *without
symptoms* only 15% sensitive.
  Sensitivity of PCR not currently known/ specificity about 100%??
  Negative PCR or Intrathecal antibody *can not* be used to rule out CNS

Comments by Dr. Dattwyler
  Testing is a "diverse not very good area".
**PREDICTIVE VALUE of positive test when patient *has* symptoms is 94-95%**.
Western blot in his opinion should not be used to confirm the diagnosis
because of standardization problems that exist.

Comments by Frank Dressler
  Felt strongly that multiple positive bands were needed on the western blot
to be significant. * The 41kD band has cross reaction; therefore a single band
may not yield good information.

Comments by Dr. Masters
  States a serious problem: "Lyme disease is a clinical diagnosis until you
make it". Then your diagnosis is questioned - especially if you can't confirm
it with tests which are not always reliable!
  It is very obvious that the "gold standard" test to define all stages of
Lyme disease is not yet developed. Until it is the controversy over what
constitutes a Lyme case will persist.

Not discussed in this is the so called Gundersen test. I have no information
on accuracy. See reference for information: I believe it is commercially
available from a lab in California:
  Reference: Callister SM,Schell RF,Lovrich SD: Lyme disease assay which
detects killed Borrelia burgdorferi. J Clin Microbiol 1991;29(9):1773-6.

What I've learned over the years about the tests.

SEROLOGY:1) Inconsistent:lab to lab :Within same lab: test to test 2) Poor
quality control 3) Tests not standardized 4) Titers can rise slowly over a
period of weeks 5) Titer depends on ability of patients immune system to
respond to Bb antigens 6) Antibiotic effect [antigen reduction minimizes or
stops antibody production ??] 7) Paired samples not very helpful -- [often see
patients in later stages of illness] 8)  Positive titers can last for months
to years (why?)

PCR - promising
 Finding Bb DNA in seronegative / CSF negative patients
 Finding Bb DNA in CSF at time of erythema migrans

 Exposure - no clinical illness or subclinical infection
 Exposure - current illness unrelated
 Exposure to non-pathogenic strain of Bb
 Immunity ??? - patient recovered
 False result - cross reactivity - other Borrelia, Treponemes
 False result - laboratory error
 True result - Lyme disease when appropriate symptoms are present

 No exposure
 True result - Not Lyme disease - if sick then current illness is not Lyme
 False result - 1) Lyme disease with low levels or no measurable antibody in
serum or CSF - early Lyme 2) Antibodies tied up in complexes causing negative
results 3) No immune response for whatever reason. 4) laboratory error

Hope this helps - in essence the answer is we don't REALLY know yet!!!


Sender: [email protected] (Mitch Collingsworth)
Subject: Re: More LymeNet questions...

A couple of things about the question of dogs, ticks, and lyme disease.
Because we have a dog and frequently visit lyme disease areas I am
concerned about this, too.

First off, having seen and removed deer ticks from my wife, I strongly
believe you would never be able to find them on a dog.  They are just too
small.  The ones you do find on dogs are *much* bigger.

Secondly our dog has come down with a limp in one leg at least a few times
in her life for various reasons, always tracked down by the vet, and so far
not related to LD.

Finally, because of my concern about LD and the obvious fact that tick
inspections are futile on dogs (for deer ticks), I asked our vet about it.
He said that dogs can contract LD.  Last year a LD vaccine was approved for
dogs and as soon as he was able to acquire it our dog was vaccinated.  My
understanding was that the hope is that after appropriate testing, this
vaccine or some variation of it will hopefully be available for humans.

By the way, not all vets are created equal.  The first time our dog came
down with a limp, I had her looked at by a different vet first.  He said
to confine her so it would be rested and if it didn't clear up in a week
he would probably have to operate.  After a week I took her to our regular
vet who said something about a bone spur or something (don't remember now,
it was several years ago) and to give her *lots* of exercise and it would
probably go away on its own.  I did and it did.  Guess which vet we've never
been back to!


Sender: JONATHAN LORD <[email protected]>
Subject: Errors in diagnosis of LD article

I am enjoying the LymeNet newsletter.  I regularly do a literature search on
this topic looking for interesting articles, since my wife is a LD victim. I
came across this article on the difficulty in getting an accurate laboratory
diagnosis.  My wife had many tests before anything came back positive.

Jonathan Lord

Appended Citation:

 Bakken LL.  Case KL.  Callister SM.  Bourdeau NJ.  Schell RF.
 Performance of 45 laboratories participating in a proficiency testing
 program for Lyme disease serology.
 Wisconsin State Laboratory of Hygiene, University of Wisconsin, Madison
 Journal of the American Medical Association 268(7):891-5, 1992 Aug 19.
 OBJECTIVE--We show that significant interlaboratory and intralaboratory
 variations exist in Lyme disease proficiency testing. DESIGN--Six case
 -defined Lyme serum samples and three serum samples from individuals with
 no history of Lyme disease were randomized in four shipments and
 distributed to 45 participating laboratories. RESULTS--Interlaboratory and
 intralaboratory performances were highly variable. Approximately 4% to 21%
 of laboratories failed to identify correctly positive serum samples with
 titers of 512 or more using polyvalent serum or immunoglobulin G
 conjugates. With lower levels of anti-Borrelia burgdorferi antibody in the

 serum sample, approximately 55% of participating laboratories did not
 identify a case-defined serum. There was also a striking inability of many
 laboratories to reproduce their results on split samples from the same
 individual. In addition, 2% to 7% of laboratories identified serum samples
 from individuals with no known exposure to B burgdorferi as positive using
 polyvalent serum. The false positivity rate increased to 27% with the use
 of immunoglobulin G conjugate. CONCLUSIONS--Our results indicate that
 there is an urgent need for standardization of current testing
 methodologies. Until a national commitment is made, serological testing
 for Lyme disease will be of questionable value for the diagnosis of the


Sender: "Lloyd E. Miller" <[email protected]>
Subject: Roxithromycin

I came across this abstract in a recent search and think it is of some
importance. The source is European - is there a difference in susceptibility
of the European strains vs. the American strains??

Hansen K,  Hovmark A,  Lebech AM,  Lebech K,  Olsson I,  Halkier-Sorensen L,
Olsson E,  Asbrink E

Roxithromycin in Lyme borreliosis: discrepant results of an in vitro and in
vivo animal susceptibility study and a clinical trial in patients with
erythema migrans.

Acta Derm Venereol (Stockh) 1992 Aug;72(4):297-300

A new semisynthetic macrolide roxithromycin was evaluated for its potential
use in the treatment of Lyme borreliosis. Using a macro-dilution broth
technique, Borrelia burgdorferi was shown to be susceptible to roxithromycin
with a minimal bactericidal concentration (MBC) of 0.06-0.25 microgram/ml. A
systemic B. burgdorferi infection was established in gerbils; a dosage of
greater than or equal to 25 mg/kg/day roxithromycin for 10 days eliminated the
infection. A single blind, randomized multicenter study was performed to
evaluate the efficacy of roxithromycin 150 mg b.i.d. versus
phenoxymethyl-penicillin 1 g b.i.d. for 10 days in patients with uncomplicated
erythema migrans. The study was interrupted when 19 patients had enrolled
because of five treatment failures. All 5 patients had received roxithromycin;
three patients had persisting or recurrent erythema migrans, one developed a
secondary erythema migrans-like lesion and severe arthralgia and one developed
neuroborreliosis. B. burgdorferi was isolated from skin biopsies after

roxithromycin therapy from two patients with persistent erythema migrans and
both isolates were still highly susceptible to roxithromycin (MBC = 0.03
microgram/ml). No treatment failures were seen in 10 patients treated with
phenoxymethyl-penicillin. Roxithromycin is thus not recommended for treatment
of Lyme borreliosis.

Institutional address:
    Department of Infection-Immunology
    Statens Seruminstitut


Many people have asked about the so called "ideal" Lyme treatment.
There is no such ideal treatment.  However, Dr. Philip W. Paparone, Director
and Chief of Infectious Diseases at the Atlantic City Medical Center,
Pompona, NJ, and Shore Memorial Hospital, Somers Point, NJ, has created
some guidelines.  They have been published in a Modern Medicine paper entitled
"There is no standard approach to Lyme Disease: Your management must be
[Modern Medicine, Sept 1992, 60;95-111].

For a summary of the last 10 years of LD research and epidemiology, you
might wish to look at Dr. Willy Burgdorfer's "decade in review" paper.  Dr.
Burgdorfer is the discoverer of Bb and an honorary researcher at the NIH.
The paper is entitled "Lyme Borreliosis: Ten Years after Discovery of the
Etiological Agent, Borrelia burgdorferi."
[Infection July/August 1991, Vol 19 No. 4;257/61-262/66]

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
Western Blot - A more precise antibody test.


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