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Volume: 2
Issue: 12
Date: 29-Jul-94


Table of Contents:

I.    LYMENET: CDC's Olson Stands By His "Lyme Death" Statement
II.   LDF: Pregnancy Research Project Begins at LDF
III.  LDF: Volunteers Needed for Research Study Design
IV.   LYMENET: MS Society to Hold Regional Conference in NJ
V.    How to Subscribe, Contribute, and Get Back Issues


Newsletter:

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


IDX#                Volume 2 - Number 12 - 7/29/94
IDX#                            INDEX
IDX#
IDX#  I.    LYMENET: CDC's Olson Stands By His "Lyme Death" Statement
IDX#  II.   LDF: Pregnancy Research Project Begins at LDF
IDX#  III.  LDF: Volunteers Needed for Research Study Design
IDX#  IV.   LYMENET: MS Society to Hold Regional Conference in NJ
IDX#  V.    How to Subscribe, Contribute, and Get Back Issues
IDX#


QUOTE OF THE WEEK:

     "Certainty generally is illusion, and repose is not the
      destiny of man."


     -- Oliver Wendell Holmes, Jr., 1897.


I.    LYMENET: CDC's Olson Stands By His "Lyme Death" Statement
---------------------------------------------------------------
Source: LymeNet News
Byline: By Marc Gabriel with reports from Frank Demarest
Date: July 26, 1994


Dr. James Olson of the CDC in Atlanta stands by his statement that
"Nobody dies from Lyme disease."  The statement was published in a
July 19 Associated Press story on a new form of ehrlichiosis, a
potentially deadly bacterial disease spread by ticks.  Olsen's words
quickly prompted outrage from Lyme patients and LD advocates, some of
whom knew individuals who have died from LD complications.


In a telephone interview with the LymeNet Newsletter on July 26,
Olson confirmed the statement.  When presented with abstracts
and other information contradicting his assertion, he reacted
angrily, insisting that we were wasting our time reading the
information to him.  Olson ended the brief interview by suddenly
hanging up, after claiming he had nothing further to say.


The AP story on ehrlichiosis described three deaths attributed to
the disease.  During the course of that interview, Olson stated
"Nobody dies of Lyme disease.  There can be a lot of complications
and there is a lot of hoopla, but nobody dies of Lyme disease."


Here are some of the materials cited during the interview:


AUTHORS:  Cary NR, Fox B, Wright DJ, Cutler SJ, Shapiro LM,
 Grace AA
TITLE:    Fatal Lyme carditis and endodermal heterotopia of the
         atrioventricular node
         Med J 1990 Mar;66(773):258]
SOURCE:   Postgrad Med J 1990 Feb;66(772):134-6


ABSTRACT:  A fatal case of Lyme carditis occurring in a Suffolk
farmworker is reported. Post-mortem examination of the heart
showed pericarditis, focal myocarditis and prominent
endocardial and interstitial fibrosis. The additional finding
of endodermal heterotopia ('mesothelioma') of the
atrioventricular node raises the possibility that this could
also be related to Lyme infection and account for the
relatively frequent occurrence of atrioventricular block in
this condition. Lyme disease should always be considered in a
case of atrioventricular block, particularly in a young
patient from a rural area. The heart block tends to improve
and therefore only temporary pacing may be required.


-----

AUTHORS:  Kirsch M, Ruben FL, Steere AC, Duray PH, Norden CW,
 Winkelstein A
TITLE:    Fatal adult respiratory distress syndrome in a patient
         with Lyme disease.
SOURCE:   JAMA 1988 May 13;259(18):2737-9


ABSTRACT: A dry cough, fever, generalized maculopapular rash, and
myositis developed in a 67-year-old woman; she also had
markedly abnormal liver function test results. Serologic tests
proved that she had an infection of recent onset with Borrelia
burgdorferi, the agent that causes Lyme disease. During a
two-month course of illness, her condition remained refractory
to treatment with antibiotics, salicylates, and steroids.
Ultimately, fatal adult respiratory distress syndrome
developed; this was believed to be secondary to Lyme disease.


-----

AUTHORS:  Marcus LC, Steere AC, Duray PH, Anderson AE, Mahoney EB,
TITLE:    Fatal pancarditis in a patient with coexistent Lyme disease
         and babesiosis. Demonstration of spirochetes in the
         myocardium.
SOURCE:   Ann Intern Med 1985 Sep;103(3):374-6


ABSTRACT: A 66-year-old man developed fever, chills, myalgias, three
erythematous skin lesions, and transient left eyelid lag.
Because of persistent fever, he was hospitalized 4 weeks after
the onset of disease; a peripheral blood smear showed Babesia
microti in 3% of his erythrocytes. Eighteen hours later, he
died unexpectedly. Autopsy showed pancarditis with a diffuse
lymphoplasmacytic infiltrate, and spirochetes were found in
the myocardium. Antibody titers to both the Lyme disease
spirochete Borrelia burgdorferi and Babesia microti were
elevated. The finding of spirochetes in the myocardium and the
elevated antibody titers to Borrelia burgdorferi suggest that
the patient died from cardiac involvement of Lyme disease.


-----

Liegner KB, Ziska M, Agricola MD, Hubbard JD, Klempner MS, Coyle PK,
Bayer ME, Duray PH, Fatal Chronic Meningoencephalomyelitis (CMEM)
with Massive Hydrocephalus in a New York State Patient with Evidence
of Borrelia Burgdorferi (Bb) Exposure, Abstract #P041T, VI
International Conference on Lyme Borreliosis, Bologna, Italy,
June 19 to 22, 1994.


-----

"Rare deaths from Lyme disease have been reported." -- CDC pamphlet,
_Lyme Disease: A Public Information Guide from the Centers for
Disease Control and Prevention_



=====*=====


II.   LDF: Pregnancy Research Project Begins at LDF
---------------------------------------------------
Sender: The Lyme Disease Foundation
Press Release -- For Immediate Release: July 12, 1994
Contact: Martina Ziska, M.D. (203) 525-2000


(HARTFORD) -- A new study designed to describe the clinical
laboratory aspects of gestational Lyme Borreliosis is scheduled to
begin this month.  The Lyme Disease Foundation, Inc, a voluntary
health organization dedicated to making Lyme disease a non-risk,
will coordinate the program.


The two year prospective study will be conducted through a
partnership among the Lyme Disease Foundation (LDF), North American
Laboratory Groups in New Britain, CT, and St. Elizabeth's
Hospital in Beaumont, TX.


Gynecologists and obstetricians currently caring for pregnant women
who have contracted Lyme disease before or during pregnancy are urged
to enroll their patients in this study.


Participants from Lyme disease endemic states are preferred.  Those
states are California, Connecticut, Delaware, Maryland,
Massachusetts, Minnesota, New Jersey, New York, Pennsylvania, Rhode
Island, and Wisconsin.


OB/GYN doctors wishing more information should call or write the
program director, Martina Ziska, MD, at the Lyme Disease Foundation,
One Financial Plaza, Hartford, CT 06103-2610; 203-525-2000
(FAX: 203-525-8425).



=====*=====


III.  LDF: Volunteers Needed for Research Study Design
------------------------------------------------------
Sender: Martina Ziska, MD,
       Medical Director, The Lyme Disease Foundation


The LDF is looking for a computer programmer and a
bio-statistician to assist in a Lyme disease study design.  No
medical knowledge is required, although knowledge of LD issues
and terminology would be helpful.  Call Dr. Ziska at 203-947-6353
for more information.



=====*=====


IV.   LYMENET: MS Society to Hold Regional Conference in NJ
-----------------------------------------------------------
Sender: Bergen-Passaic Chapter -- The National MS Society
Press Release -- For Immediate Release -- July 1994
Contact: 201-967-5599


The Bergen-Passaic Chapter of the National Multiple Sclerosis Society
will be hosting its Tenth Annual Regional Conference entitled "Living
with Invisible Symptoms."  This one day educational program will be
held at the Park Ridge Marriott in Park Ridge, NJ on Sunday, November
13 from 11 am to 3 pm.


Featured speakers Mary E. Siegel, Ph.D. and Paul J. Donoghue, Ph.D.,
co-authors of "Sick and Tired of Feeling Sick and Tired," will discuss
living with a chronic illness.  Abe Eastwood, Ph.D., Director of
Research and Grants Programs for the National Multiple Sclerosis
Society will discuss current research, treatments and medications
including Betaseron.  Following his presentation will be a questions
and answers period.


Those invited to attend this program include people with multiple
sclerosis or any other chronic illness, their spouses/partners,
relatives, caregivers and health care professionals.


To register or for more information, please call the chapter at
201-967-5599.



=====*=====


V.    HOW TO SUBSCRIBE, CONTRIBUTE AND GET BACK ISSUES
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