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Volume: 4
Issue: 16
Date: 18-Nov-96


Table of Contents:

I.    LYMENET: Lyme Physicians Request Patient Feedback
II.   LYMENET: Government Information on Lyme Available
III.  LYMENET: Concerns Raised Over Lyme Disease Report
IV.   AM J PHYS MED REHABIL: Lyme borreliosis neuropathy.
      A case report.
V.    J INFECT DIS: Characteristics of Lyme disease spirochetes
      in archived European ticks.
VI.   About The LymeNet Newsletter


Newsletter:

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


IDX#                Volume 4 - Number 16 - 11/18/96
IDX#                            INDEX
IDX#
IDX#  I.    LYMENET: Lyme Physicians Request Patient Feedback
IDX#  II.   LYMENET: Government Information on Lyme Available
IDX#  III.  LYMENET: Concerns Raised Over Lyme Disease Report
IDX#  IV.   AM J PHYS MED REHABIL: Lyme borreliosis neuropathy.
IDX#        A case report.
IDX#  V.    J INFECT DIS: Characteristics of Lyme disease spirochetes
IDX#        in archived European ticks.
IDX#  VI.   About The LymeNet Newsletter
IDX#



I.    LYMENET: Lyme Physicians Request Patient Feedback
-------------------------------------------------------
Sender: S. Chandra Swami, M.D., M.B.B.S.


EDITORS'S NOTE: Dr. Sawmi has requested that this letter be circulated
to as many Lyme patients as possible.  It is reprinted below for your
information.


S. Chandra Swami, M.D.
Colonial Square Professional Center
701 North Hermitage Road
Hermatige, PA  16148
TEL (412) 981-3322
FAX (412) 981-6760
                                                    October 21, 1996


Dear Lyme Patient,

We are Beginning a struggle to fight for the right to treat Lyme  
patients.  Today, like others across the nation, we have been put in
a position to defend treatment protocols that have been common-place
in the primary care setting, but not readily accepted in the
scientific, academic arena.  Most of you are fully aware of the
nationwide battle that has been heating up for several years.
One physician in New Jersey took his life after a severe attack on
his protocols. Several have had their licenses removed, others have
retreated and stopped treating any Lyme patients, and new targets
will be attempted if this does not stop.


This will be an intense time for us.  Ronda will be compiling the
necessary documentation which is an arduous task.  Please be patient
with us for the interruption of our availability at times.


You may help if you wish.  It has been suggested that letters form
patients that were treated by any physician including us may be of
some help.  Please be honest in stating if we have helped or harmed
you during your therapy.


It may be addressed to:

       To Whom It May Concern:       (Send to the office)

Dr. Joseph Burrascano and Dr. John Drulle are assisting us.  Please
dispel any false rumors of any wrong doings.  We are doing this for
you.  We have the above physicians to treat us, but your right needs
to be preserved.



=====*=====


II.   LYMENET: Government Information on Lyme Available
-------------------------------------------------------
Sender: Michael Ravnitzky <MikeRav@ix.netcom.com>


You can obtain dozens of military technical reports on Lyme Disease
from the Defense Technical Information Center, a government agency.


NOTE:  Do not bother using the DTIC web site--in a nutshell, it is
worthless because the web site omits most of the two million technical
reports in the DTIC collection.  Send a letter--you will get much
better results.


The fee is likely to be free or only a few bucks.  You probably want
to include a statement in the letter such as *I agree to pay
reasonable fees associated with this request.  Please notify me if
the cost will exceed $30.*,  so that they won't delay the processing
of the request.  Remember, they will try to dissuade you from asking
for such a list.  If they send you a letter, and you do not respond,
they will withdraw your request and you will not get your information.


Here is a form letter to use for your request:

To:    Defense Technical Information Center
      Attn:  DTIC-RSM [Kelly D. Akers, FOIA Manager]
      8725 John J. Kingman Road, Suite 0944
      Fort Belvoir, VA  22060-6128  USA
Phone: 703-767-9194


Dear Ms. Akers:

I request the following records under the provisions of the Freedom of
Information Act:


A computer generated technical report bibliography [for all
computerized index years] of reports on the subject[s]/keyword[s] of:


________________  OR   _________________  OR  ________________  OR

_______________   OR   _________________  OR   _______________

This is a request for DTIC records, please don't forward my request to
NTIS.  Please include both classified and unclassified records in your
search.  If any of the records are classified, please review them for
release, or the release of nonsensitive portions.


I am an individual, noncommercial requester and this request is not
being made for commercial purposes.  [OR YOU MIGHT INSTEAD INDICATE IF
YOU ARE A COMMERCIAL REQUESTER, OR AN EDUCATIONAL OR SCIENTIFIC
INSTITUTION, OR A REPRESENTATIVE OF THE MEDIA]  I also agree to pay up
to $35 for reasonable fees associated with this request.


Sincerely,        ______________


=====*=====


III.  LYMENET: Concerns Raised Over Lyme Disease Report
-------------------------------------------------------
(c) 1996 WTNH-TV Channel 8
Date: October 31, 1996


It was hailed as the study that would put to rest many parents fears
about Lyme disease.  But two Connecticut researchers are coming under
fire for offering people a false sense of hope.  Here's a follow-up
report from News Channel 8's Wendy Cicchetti.


THE STUDY, PUBLISHED IN LAST THURSDAY'S (Oct. 24) NEW ENGLAND JOURNAL
OF MEDICINE, FOUND THE PROGNOSIS FOR CHILDREN WITH LYME DISEASE IS
EXCELLENT, IF THEY ARE PROMPTLY TREATED WITH ANTIBIOTICS. BUT IT'S
*HOW* THE TWO DOCTORS PROMOTED THEIR FINDINGS THAT HAS PEOPLE ACROSS
THE COUNTRY, WHO ARE SUFFERING FROM THE DISEASE, UP IN ARMS.


LIFE IS HARDLY WHAT IT USED TO BE FOR CINDY OARATO.

CINDY OARATO / BRISTOL: "Lyme disease has totally destroyed my life."

EVERYWHERE THERE ARE SIGNS OF HER BATTLE AGAINST LYME DISEASE.
A HOOK TO HOLD AN INTRAVENOUS BAG FILLED WITH ANTIBIOTICS.


CINDY OARATO / BRISTOL: "In my case with my disease the treatment
helps me, but it doesn't cure me."


CINDY, AND OTHERS WHO CONSIDER THEMSELVES CHRONIC SUFFERERS OF LYME
DISEASE WERE SENT INTO AN UPROAR LAST WEEK,, WHEN TWO CONNECTICUT
RESEARCHERS ANNOUNCED RESULTS OF THEIR STUDY THAT LOOKED AT
CHILDREN WITH LYME DISEASE.


DR. EUGENE SHAPIRO / YALE UNIVERSITY (OCT 22): "there seems to be
this pervasive fear of Lyme disease being this horrible illness that
if someone gets it, it is incurable and leads to all sorts of terrible
things. that just really isn't true."


THE STUDY FOUND THE PROGNOSIS FOR CHILDREN WITH LYME DISEASE IS
EXCELLENT, IF IT IS DETECTED AND TREATED EARLY...BUT THAT MESSAGE
WAS NOT AS CLEAR CUT DURING THE PRESS CONFERENCE.  THE ANNOUNCEMENT
WAS COVERED BY THE NEW YORK TIMES, THE ASSOCIATED PRESS, SEVERAL
LOCAL PAPERS, AS WELL AS NEWS CHANNEL EIGHT.  NO SOONER THAN OUR
STORY AIRED,, WERE WE INUNDATED ON THE INTERNET WITH RESPONSES FROM
PEOPLE ALL OVER THE COUNTRY APPAULED AT THE DOCTORS DOWNPLAYING THE
SERIOUSNESS OF THE DISEASE.


THOMAS FORSCHNER / LYME DISEASE FOUNDATION: "The conclusions I saw on
T.V. and in the papers was that Lyme disease is easily treated and
easily diagnosed and thats just not true."


THE LYME DISEASE FOUNDATION IS URGING THE AUTHORS OF THE STUDY TO
RESTATE THEIR CONCLUSIONS ANNOUNCED THAT DAY -- LIKE THIS ONE THAT
OUTRAGED CHRONIC LYME DISEASE SUFFERERS.


DR. EUGENE SHAPIRO / YALE UNIVERSITY (OCT 22): "Hopefully, this
carefully conducted study will demonstrate that people who have Lyme
disease have a good prognosis."


THOMAS FORSCHNER/LYME DISEASE FOUNDATION: "Their conclusions to the
public and the media are not the same as the conclusions in the
paper."


CINDY OARATO / BRISTOL: "By telling people Lyme disease can't have a
dramatic effect I'm afraid that parents might rely on that information
and might let up their guard about Lyme disease."


NEITHER DOCTOR MICHAEL GERBER, NOR DOCTOR EUGENE SHAPIRO WOULD SPEAK
TO US ON CAMERA ABOUT THE RESPONSE WE RECEIVED. HOWEVER DR. GERBER
ISSUED THIS THIS WRITTEN STATEMENT, WHICH DR. SHAPIRO AGREED WITH:


"I STAND BEHIND THE CONCLUSIONS PRESENTED IN THE STUDY WHICH WAS
A PROSPECTIVE COMMUNITY BASED EVALUATION OF CONSECUTIVE PATIENTS
PRESENTING TO THEIR OWN PEDIATRICIANS. THE COMPREHENSIVE NATURE OF THE
FOLLOW-UP EVALUATION OF THESE PATIENTS, WHICH INCLUDED BOTH MULTIPLE
TELEPHONE INTERVIEWS AS WELL AS PHYSICAL EXAMINATIONS, GIVES ME A
GREAT DEAL OF CONFIDENCE IN THESE CONCLUSIONS."


BUT THE FOLKS THAT WE SPOKE WITH WEREN'T SO CONCERNED WITH THE
CONCLUSIONS OF THE STUDY, BUT RATHER HOW THEY WERE PRESENTED TO THE
PUBLIC THAT DAY.


To communicate with others who are interested in Lyme disease, we
suggest reading the sci.med.diseases.lyme newsgroup on Usenet, or
search for Lyme Disease through one of the many search-engines on the
Internet.



=====*=====


IV.   AM J PHYS MED REHABIL: Lyme borreliosis neuropathy.
     A case report.
---------------------------------------------------------
AUTHORS: Deltombe T, Hanson P, Boutsen Y, Laloux P, Clerin M
ORGANIZATION: Department of Physical Medicine and Rehabilitation,
             University Hospital of Mont-Godinne UCL, Yvoir,
             Belgium.
REFERENCE: Am J Phys Med Rehabil 1996 Jul-Aug;75(4):314-6
ABSTRACT:


Lyme borreliosis is responsible for a large variety of peripheral
neurologic manifestations including axonal polyneuropathy,
radiculopathy, and facial nerve palsy.  The prevalence of the disease
must draw our attention on the possible responsibility of Borrelia
burgdorferi in the pathogenesis of such symptomatology.
Electrophysiologic studies demonstrate a proximal and distal axonal
involvement, whereas neuropathologic studies suggest that vasculitis
might be one of the primary pathophysiologic mechanisms.
Electromyography provides a useful diagnostic tool and an important
measure of response to treatment.  Although peripheral neuropathy
usually improves, our case report confirms the fact that chronic
neurologic manifestations may not consistently resolve with
appropriate treatment.



=====*=====


V.    J INFECT DIS: Characteristics of Lyme disease spirochetes
     in archived European ticks.
---------------------------------------------------------------
AUTHORS: Matuschka FR, Ohlenbusch A, Eiffert H, Richter D, Spielman A
ORGANIZATION: Institut fur Pathologie, Virchow-Klinikum, Medizinische
             Fakultat der Humboldt-Universitat zu Berlin, Germany.
REFERENCE: J Infect Dis 1996 Aug;174(2):424-6
ABSTRACT:


To determine whether the characteristics of the Lyme disease
spirochete (Borrelia burgdorferi) in Europe may have changed during
the past century, DNA was amplified from archived Ixodes ricinus
ticks.  Tick DNA could be amplified, even when ticks had been stored
under museum conditions for nearly a century.  Spirochetal DNA was
detected by polymerase chain reaction in 6 ticks preserved for as
long as a century; the oldest was collected in 1884.  Borrelia
garinii, which predominates in modern ticks in the region, infected
3 of these older ticks, and the presently infrequent B. burgdorferi
sensu stricto infected 2. These data indicate that residents of
Europe have been exposed to diverse Lyme disease spirochetes at
least since 1884, concurrent with the oldest record of apparent
human infection.



=====*=====


VI.   ABOUT THE LYMENET NEWSLETTER
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