LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Newsletter Volume 2 Issue 07 LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Home LymeNet Newsletter Library

Volume: 2
Issue: 07
Date: 09-May-94


Table of Contents:

I.    NIH NEWS: Research on Chronic Lyme Disease
II.   LDF CONFERENCE: Opening Remarks by Medical Director
      M. Ziska
III.  DTSCH MED WOCHENSCHR: Reinfection with Borrelia burgdorferi
      in an immunocompetent patient
IV.   How to Subscribe, Contribute, and Get Back Issues


Newsletter:

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


IDX#                Volume 2 - Number 07 - 5/09/94
IDX#                            INDEX
IDX#
IDX#  I.    NIH NEWS: Research on Chronic Lyme Disease
IDX#  II.   LDF CONFERENCE: Opening Remarks by Medical Director
IDX#        M. Ziska
IDX#  III.  DTSCH MED WOCHENSCHR: Reinfection with Borrelia burgdorferi
IDX#        in an immunocompetent patient
IDX#  IV.   How to Subscribe, Contribute, and Get Back Issues
IDX#


QUOTE OF THE WEEK:

        " One reason for not reporting [LD cases] is the fear
        that the clinical observation is not correct.  They do
        the literature search to see what is accepted to be said
        and published.  If their observation is not in line with
        the accepted stream of knowledge, they correct the
        observation.  This is wrong.  By correcting the observation,
        the genuine information it contains, as well as it's value,
        is lost.  I find this a very serious problem, which in effect
        can arrest the progress in the medical discipline. "


     -- Martina Ziska, MD
        Medical Director, The Lyme Disease Foundation (see Section II)



I.    NIH NEWS: Research on Chronic Lyme Disease
------------------------------------------------
SOURCE: Office of Communications
       National Institute of Allergy and Infectious Diseases
DATE: April 1994


In parts of the United States, the most common tick-borne disease is Lyme
disease.  This emerging infectious disease is caused by a spirochetal
(spiral shaped) bacterium, Borrelia burgdorferi.  Lyme disease usually
is easily treated in the early stages with antibiotics.  Patients who
go untreated or who do not respond to antibiotics may develop a chronic
multi-system disease with an unpredictable array of symptoms.  Many of
these symptoms mimic those of other diseases.  Diagnostic tests that
detect antibodies in the serum of the blood are imperfect, contributing
further to the misdiagnosis of this disease.


Chronic Lyme disease most often produces persistent arthritis or
nervous system problems, although the heart also can be involved.
Lyme arthritis usually affects one or several large joints, often
the knee.  If the central nervous system is involved, symptoms may
include headaches, nausea and vomiting, memory loss and a variety
of other cognitive, behavioral and sleep problems.  Involvement of the
peripheral nerves can result in radiating pan in the limbs, numbness
and partial paralysis.


No one knows why in some patients with late Lyme disease symptoms
eventually diminish or disappear, whereas in other patients the symptoms
persist.  Scientists think that in some cases the spirochete may evade
the immune system.  It then survives in numbers too low to be detected
by conventional tests, yet high enough to produce illness.  Persistent
symptoms also can be the result of an overactive immune response
that continues to injure the host's tissues long after the organism has
been eradicated.  There is evidence that both of these situations
occur in patients with chronic Lyme disease.


Continued research is essential to making progress against this
disease.  Since 1981, when an NIAID scientist first discovered the
responsible organism, the Institute has supported an active research
program on Lyme disease.  Much of this research focuses on the
pathogenesis, or disease process.  This includes the study of the
biology of B. burgdorferi, how it evades the immune system, how it
interacts with its human host, its genetic components that allow the
organism to control surface protein expression, and differences in
human genes that account for the variations in the immune response
among individuals.


In January 1994, NIAID convened a meeting to address the issues
surrounding chronic Lyme disease.  Attending were scientists involved
in Lyme disease at NIH and elsewhere, physicians and patient advocates.
The participants acknowledged that determining whether chronic Lyme
disease is caused by persistent infection or is a post-infectious
disorder is a major research goal.  Finding the answer to this question
for any individual patient will have an important bearing on his or
her treatment.


While the participants acknowledged the difficulties in carrying out
clinical trials to evaluate chronic Lyme disease, they agreed that
clinical trials are necessary to resolve questions about optimal
treatment.


Participants suggested that patients could be selected on the basis
of relapse or non-response following appropriate treatment to combat
early-stage Lyme disease.  This would provide common criteria for
studying and treating this multi-symptom disease.  Such patients
might include (1) those with persistent arthritis or persistent
fatigue or fibromyalgia; (2) those with cognitive abnormalities,
neuroradiculitis, headache or encephalomyelitis; (3) those with
or without symptoms who have seroconverted following acute Lyme
disease; (4) those with objective evidence of a continuing B.
burgdorferi infection; and (5) a Lyme disease negative-control
group.


The group that met in January will likely reconvene later in the year
to discuss clinical trial design should funds become available to
support a treatment trial for patients with chronic Lyme disease.
In the interim, NIAID staff with be meeting with staff at the
Centers for Disease Control and Prevention to discuss standardization
of the Western Blot diagnostic test and will review new applications
submitted in response to two recent solicitations.  One, an NIAID Request
for Applications, invited research proposals on immune responses and
animal models of chronic Lyme disease.  The other, a Request for
Proposals, solicited contract proposals for developing animal models
of chronic Lyme disease.  These efforts will ultimately advance our
understanding of chronic Lyme disease, and lay the groundwork for
future clinical trails.


NIAID, a components of the National Institutes of Health, supports
research on AIDS, tuberculosis, Lyme disease and other infectious
diseases as well as allergies and immunology.  NIH is an agency of
the U.S. Public Health Service, U.S. Department of Health and Human
Services.



=====*=====


II.   LDF CONFERENCE: Opening Remarks by Medical Director M. Ziska
------------------------------------------------------------------
By Martina Ziska, MD
April 22, 1994


[Here are selected excerpts from the remarks made by the Lyme Disease
Foundation's Medical Director, Martina Ziska, MD, at the opening of
the 1994 State of the Art Conference held in Stamford, CT, April
22 & 23.]


Ladies and Gentlemen,

I would like to use this opportunity to dedicate this Conference to
Doctor Paul Lavoie.  There is one particular reason for this
dedication -- let me explain it.  I met Dr. Lavoie in person in
September of last year at the time when he learned about his terminal
illness.  


The reason for my trip to San Francisco was to help Doctor Lavoie in
his limited time organize collected data for publication and to try to
capture something -- the essence of clinical medicine and
science -- the value of which has been forgotten, partly because that
art of doing it is not known to many any more: that something is called
the ART OF MAKING CLINICAL OBSERVATIONS.  I have used the word art,
which is an unacceptable word in today's science.


We became too technical and forgot that patients usually carry all
information necessary for diagnosis, if asked and led properly by a
knowledgeable physician and if -- and this is the second
condition -- the physician is able to make the correct analysis of the
data and link important ones together with the right doses of suspicion
and intuition.


To explain this issue better, let me use one example from history.  In
1943, _Doctor Bo Bafverstedt_ from Stockholm published in Acta
Dermatologica Venerologica a paper on pseudolymphomas called "Uber
Lymphadenosis benigna cutis."  By setting up the basic criteria, he
presented 41 of his own patients and in addition discussed 101 patients
from the literature.


Now, that might not sound so unusual -- after all that was not a
landmark paper -- but the fact that the physician discussed 101
patients which were not his but published cases and was able to make
the clinical and diagnostic connection -- that fact I find very
peculiar.


Just picture this being done nowadays.  Physicians do not report their
own clinical observations, not to speak about evaluating patients from
the literature.  One reason for not reporting is the fear that the
clinical observation is not correct.  They do the literature search to
see what is accepted to be said and published.  If their observation is
not in line with the accepted stream of knowledge, they correct the
observation.  This is wrong.  By correcting the observation, the
genuine information it contains, as well as it's value, is lost.  
I find this a very serious problem, which in effect can arrest the
progress in the medical discipline.


Dr. Lavoie died this January with only one regret.  During almost 20
years of practice, seeing virtually hundreds of Lyme patients, he has
gathered invaluable information about the clinical course, diagnostic
and treatment response to the disease -- which will never be tested by
others -- because, unless published, this information cannot be shared
with the medical community.  This is the first step that has to be
done.  Carefully, but truthfully document what you see.


[...]

There is only good medicine, looking for solutions, taking risks,
pursuing the truth, no matter what it costs and where it comes from.  
Instead of this, facts are being traded for theory and real people's
problems for objects serving the purposes of science.  Disarray is the
word, which is disturbing to see connected to science.  It expresses
the impatience with surprises and disappointments from leaders who we
think should command events.  But to suggest that the unexpected (new,
unexplained) is unacceptable in science is illogical.


There are too many dogmas in the world of Lyme disease, which are
stumbling blocks on the way to answers, explanations and solutions.  
Instead of reasoning from the position of authority or ignorance by
ostentation of seeming wisdom, the work has to be done.  The areas
where attention is most needed will be discussed in numerous
presentations during the Conference, but let me outline at least some
of them.


Starting from the end, area of treatment for Lyme disease is the most
controversial one.  Everybody wants the definitive treatment protocol.  
But does it have to be an area of controversy?  Not at all if a couple
things were done:


First of all, physicians need to report on what they are doing and
with what results.  Do they treat short or long term?  How are their
patients doing on various regimens?  We know that various things are
being done out there, but reports are missing.  Secondly, clinics  or
places with availability for such studies should do treatment trials,
especially for persistently infected people.  It is amazing that after
over 10 years of the existence of clinical disease there has been only
one double blinded randomized controlled treatment trial on Lyme
disease.  No treatment trial for chronic disease ever!


Does this mean that this is not a problem?  Do we want to know or is
the issue being avoided?  In the light of the debilitating potential
Lyme disease has, how long are we going to wait to develop a well
defined group of selected patients who meet the rigorous criteria?  
When do we start to study the invaluable clinical material which is
available now from the numerous patients, a fragment of which is present
here in this room?  Or are we going to wait a couple more years until
they are not only physically but also mentally affected?  What are we
going to do for them now?


This all starts from the acceptance of the problem, which is the
existence of chronic Lyme infection.  The resistance towards this issue
has lessened only because it has now become politically correct.  Don't
you find this disturbing?


Too many questions, I guess, but let me add a couple more.  What about
gestational, congenital and pediatric Lyme disease, to name only some?  
Do they exist?  How big a problem do they represent?  Judging from the
number of recent scientific studies, it's not even worth of mentioning
for the marginal significance!


Why do we hear otherwise, then?  Why do we register over 600 pregnant
women with Lyme disease and a possible link to the fetus and newborns
health problems?  What is the number which will get attention?  Why is
nobody studying these issues?  Are we taking enough responsibility
towards issues likes these?  I will let everybody to figure out their
own answer.


Doctor Lavoie realized too late what was important to be done.  We
should learn the lessons till we have time.  We should use all our
talents and abilities to do the work, which need to be done, with
humbleness and respect.  We are here to make history.  When we meet in
a year, we should discuss the results of our work in these "blank"
areas.  Knowledge, however partial, can replace controversies.  If
that will happen, then my words -- which are to motivate and
inspire -- didn't fail.



=====*=====


III.  DTSCH MED WOCHENSCHR: Reinfection with Borrelia burgdorferi in
     an immunocompetent patient
--------------------------------------------------------------------
AUTHORS: Hassler D, Maiwald M
REFERENCE: Dtsch Med Wochenschr 1994 Mar 11;119(10):338-42
ORGANIZATION: Hygiene-Institut der Universitat Heidelberg.
ABSTRACT:


A 54-year-old patient with an intact immune system developed Lyme
disease three times within 4 years.  The first time an erythema
migrans occurred, which was successfully treated with oral doxycycline
(100 mg twice daily for 20 days).  Specific antibodies were
subsequently demonstrated.  Re-infection nonetheless occurred a year
later, again as erythema migrans.  Oral doxycycline in higher dosage
(three times 100 mg daily for 20 days) failed to prevent generalization
of the infection with rigor, head and neck aches, myalgia, fatigue and
subfebrile temperatures.  There was a marked increase in Borrelia-
specific antibody titre.  Parenteral treatment with cefotaxime
(twice daily 3 g for 12 days) was curative.  But 2 years later yet
another re-infection occurred with classic erythema migrans, which
regressed under doxycycline.  The course of the disease in this case
demonstrates that Borrelia-specific antibodies do not always protect
against re-infection.  This may have consequences for the possible
development of a vaccine.



=====*=====


IV.   HOW TO SUBSCRIBE, CONTRIBUTE AND GET BACK ISSUES
------------------------------------------------------


SUBSCRIPTIONS:
Anyone with an Internet address may subscribe.
Send a memo to:  listserv@Lehigh.EDU
in the body, type:  subscribe LymeNet-L YourFirstName YourLastName


DELETIONS:
Send a memo to:  listserv@Lehigh.EDU
in the body, type:  unsubscribe LymeNet-L


CONTRIBUTIONS:
Send all contributions to  LymeNet-L@Lehigh.EDU  or FAX them to
908-789-0028.  All are encouraged to submit questions, news items,
announcements, and commentaries.


BACK ISSUES: Available via 3 methods:
1. E-Mail:
  Send a memo to:  listserv@Lehigh.EDU
  on the first line of the memo, type:
  get LymeNet-L/Newsletters x-yy        (where x=vol # and yy=issue #)
  example:  get LymeNet-L/Newsletters 1-01  (will get vol#1, issue#01)
2. Anonymous FTP:
  ftp.Lehigh.EDU:/pub/listserv/lymenet-l/Newsletters
3. Gopher:
  Site #1: extsparc.agsci.usu.edu
  Menu Selections: Selected Documents, Diseases, LymeNet Newsletter
-----------------------------------------------------------------------
LymeNet - The Internet Lyme Disease Information Source
-----------------------------------------------------------------------
Editor-in-Chief: Marc C. Gabriel <mcg2@Lehigh.EDU>
           FAX: 908-789-0028
Contributing Editors: Carl Brenner <brenner@ldeo.Columbia.EDU>
                     John Setel O'Donnell <jod@Equator.COM>
                     Frank Demarest <76116.2065@CompuServe.COM>
Advisors: Carol-Jane Stolow, Director
         William S. Stolow, President
         The Lyme Disease Network of New Jersey (908-390-5027)

-----------------------------------------------------------------------
WHEN COMMENTS ARE PRESENTED WITH AN ATTRIBUTION, THEY DO NOT
NECESSARILY REPRESENT THE OPINIONS/ANALYSES OF THE EDITORS.
-----------------------------------------------------------------------
THIS NEWSLETTER MAY BE REPRODUCED AND/OR POSTED ON BULLETIN BOARDS
FREELY AS LONG AS IT IS NOT MODIFIED OR ABRIDGED IN ANY WAY.
-----------------------------------------------------------------------
SEND ALL BUG REPORTS TO mcg2@Lehigh.EDU
-----------------------------------------------------------------------


Home | Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet


© 1994-1999 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to the Terms of Use.