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Volume: 1
Issue: 16
Date: 21-Jul-93


Table of Contents:

                       The National LymeNet:
              (National Lyme Disease Computer Network)
                       What It Will Do For Us
                           Why We Need It
                        Request For Donations


Newsletter:

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*                  Lyme Disease Electronic Mail Network                     *
*                          LymeNet Newsletter                               *
*****************************************************************************
                     Volume 1 - Number 16 - 7/21/93


                       ***** SPECIAL ISSUE *****
            ***** INTRODUCING... THE NATIONAL LYMENET *****



I. ***** THE NATIONAL LYMENET -- WHY WE NEED IT *****

Ponder the following:

FACTOID: A 1990 University of Minneapolis study found that, while 3% of a
control group in that city were seroreactive for Borrelia burgdorferi (the
causative agent of Lyme disease) 13% of the patients being evaluated for
heart transplants at the University were seroreactive.  The authors conclude
that, given LD has been implicated as a cause of congestive heart failure,
infection with LD spirochetes may be contributing to the pathogenesis of
chronic cardiomyopathy in patients from endemic areas.  (Source: V Int'l
Conference on Lyme Borreliosis, Arlington, VA, 1992, Abstr. #49)


FACTOID: Medical entomologist Tom Schwan and his colleagues at the National
Institute of Allergy and Infectious Diseases in Hamilton, Montana, made an
important discovery in 1989.  They found that mice mounted a vigorous
antibody response against Bb soon after infection.  However, the situation
was different four months later.  "Schwan extracted Bb from the infected
mice and mixed it with mouse antibodies -- the same type that had strongly
attacked the bacteria before.  This time, the bacteria provoked only a
weak assault, indicating that the antibodies were less able to recognize
their quarry.  Since antibodies recognize a bacterium by binding to certain
protein molecules on its surface, those molecules must me somehow changing
over time.  'And it's more than just having the ability to change aimlessly,'
says Schwan.  'Selective pressure appears to be giving rise to spirochetes
that are not reactive with the immune system.  In this way, they are much more
able to maintain an infection.'"  (Source: Discover, September 1989, p10).


FACTOID: A CDC study published last May in MMWR stated that "The finding that
only 7% of physicians in selected primary-care specialties in Connecticut
reported LD in 1991 and/or 1992 suggests that most primary-care physicians in
the state have not diagnosed cases of LD and/or that under reporting of cases
by physicians is common."


Despite the complexity of the issues involved, despite the extent of the
epidemic, huge hurdles exist:


FACTOID: According to Helen Ingoglia, head of the New Mexico Chapter Lyme
Disease Support Group, this is what she endured on her way to an LD
diagnosis (between 1990 and 1992):  "The [insurance] company then came up
with the idea of having us go all the way to U.C.L.A. to have their version
of an LD specialist look us over.  The doctor knew nothing of Lyme disease.  
I had to fill him in as to what the symptoms were, where it originated, and
who were the recognized specialists.  This doctor was supposed to be the head
of the Infectious Disease Department at U.C.L.A.  He even asked me if Lyme
was contagious.  He had never seen a Lyme disease patient in his practice.
He told me that California had no Lyme disease..." (Source: The Lyme Times,
April 1993, p16).


For the record, 1,512 cases of LD were reported to the CDC from California
between 1980-1991.


We have a long way to go, folks.

With over 400 support groups in the US, dozens of vocal researchers and
clinicians, and hundreds of thousands of patients since 1980, why is Lyme
disease such a foreign term to so many?  Why is so much misinformation
in circulation?  Why are treatment protocols written circa 1985 still the
standard in many institutions?


It's because too many people are missing the big picture.  Policy and
opinions are being shaped by the perspectives of a few "experts" appointed
by the media, very often rheumatologists.  Yet these perspectives offer
us only one piece of the massive puzzle that is Lyme disease.


The solution to the ignorance and misinformation is to put all the pieces
together.  The facts presented at the beginning of this newsletter offer you
another piece of the puzzle.  When various perspectives are assembled,
the real story emerges.  The challenge is to find a glue for this puzzle.


The National LymeNet is it.


II. ***** THE SOLUTION -- THE NATIONAL LYMENET *****

Now, let me yield to Bill Stolow, the President of the Lyme Disease
Network of NJ, Inc.,  He will explain what we're up to...


July 1, 1993
Dear friend,


The Lyme Disease Network is proud to invite you to become a partner
in creating a new computerized information network.  The National LymeNet
will bring together the leaders of the Lyme disease community, physicians,
researchers and health service organizations.  This is a crucially needed
resource since geography, illness, time and financial constraints prevent
these parties from meeting on a regular basis.


The National LymeNet will allow these individuals to coordinate their work
and reduce redundant efforts.  It will also offer the world's only
information database dedicated to Lyme disease and its related disorders.


During the evolution of the network, the following services will be
introduced:


*  A resource library will be maintained containing all literature pertaining
  to Lyme disease.  The database will find documents via simple search
  procedures.  For example, a user may query the library for all entries
  that contain the word "fibroblasts" or "Dr. Smith."


*  Internet-style newsgroups will allow users to gather in smaller groups
  based on specific interests.  They will exchange ideas by posting messages
  to electronic bulletin boards.  For example, microbiologists can discuss
  their latest findings with colleagues, while patient advocates can
  exchange information on the latest legislative activity from Albany to
  Washington.


*  All users will have access to electronic mail which will enable anyone to
  send private messages to other users.


All users of the system will connect through the use of PCs and modems
installed in their home or office.  A public data network will be used so
participants can dial a local telephone number to access the service.  
Appropriately pre-configured communications software will be provided so no
technical experience will be required to use the LymeNet.


We will make every effort to provide users who don't have appropriate
hardware or funds with a PC through corporate donations.


Individuals who prefer not to connect electronically will always have the
option to obtain information by calling the Lyme Disease Network by phone.  
The staff can search for the information requested on the computer and mail
the results to the caller.


Your support will be acknowledged.  Enclosed is a list detailing how your
contribution will be recognized.  By becoming a partner in this venture, your
organization will join others in providing this much needed service to the
Lyme community, as well as raising the standard of care, for which we are
all striving.


Donations can take many forms.  Cash donations are always welcome, but we
also look forward to receiving donated products or services needed to put
the network together.  Please refer to the enclosure describing our needs.


Now is the time for your organization to become "connected" with the National
LymeNet.   Please do not hesitate to contact me for further information.  
Thank you in advance for your support.


Sincerely,

Bill Stolow, President
The Lyme Disease Network
908-390-5027


--

NATIONAL LYMENET
DONATION CATEGORIES


There are four donation categories.  Donations may be made in cash or
equivalent products or services.  Each donation will be acknowledged in the
following way:


Pace Setters: $5,000 and greater
* Pace Setters will be acknowledged every time a user logs-in to the network
 on the greeting screen.  Their name or organization name will be listed.
* Their name or organizational name will be cited in press releases
 announcing the service.
* Their name or organizational name will be placed on the cover page of the
 National LymeNet's user manual.
* Pace Setters will be entitled to a complimentary 4 year subscription to
 the LymeNet.  


Leaders: $1000 and greater
* The names of the Leaders will be readily accessible from the LymeNet's
 main menu when users chose to view the information describing the network.
* Leaders will be listed on the "acknowledgments" page of the National
 LymeNet's user manual.
* Leaders will be entitled to a complimentary 8 month subscription to the
 LymeNet.


Benefactors: $250 and greater
* Benefactors will be listed on the "acknowledgments" page of the National
 LymeNet's user manual.
* Benefactors will be entitled to a complimentary 2 month subscription to
 the LymeNet.


Friends: $50 and greater
* Friends will be listed on the "acknowledgments" page of the National
 LymeNet's user manual.


All donors will receive a letter thanking them for the donation.  The value
of the donation will be listed in the letter for tax purposes.

--


NATIONAL LYMENET
REQUIRED MATERIALS


The National LymeNet will be built as distributed Unix environment using a
NetWare (with NFS mountable volumes) file server as the main storage medium.  
Each host will have a specific function so as to prevent any machine from
being overburdened.  This will also allow tremendous flexibility and
expandability, as we can simply add more hosts to network when we need
additional power.  The following materials are required for this project:


FILE SERVER:
*  486DX2 EISA w/ 16MB RAM
*  SCSI adapter
*  ~1.5 GB SCSI hard drive (or array of drives amounting to ~1.5 GB)
*  NE3200 Ethernet adapter (w/ BNC interface)
*  SCSI Tape Back-up System
*  Uninterruptable Power Supply
*  VGA monitor and keyboard
*  All hardware must be Novell Labs approved


UNIX HOSTS:
Each host may be one of the following:
*  A 486-33 with 16MB RAM or greater PC (with BNC Ethernet adapter).
*  A Sun SparcStation, HP Apollo, IBM RS/6000 or similar UNIX workstation.


COMMUNICATION MEDIA:
In order for users to connect to the LymeNet via local dialups, we are
seeking:


*  Access to a Public Data Network (PDN) such as the CompuServe Packet
  Network (CPN), Telenet, SprintNet, etc.  This will allow subscribers to
  dial a local telephone number to access the LymeNet.


Additionally,
*  A Class "C" Internet address.  This will allow users already connected to
  the Internet to connect to the LymeNet via the telnet protocol.  
  Additionally, LymeNet information files would be available to all Internet
  subscribers who have FTP capability.  It will also allow LymeNet
  subscribers to communicate with the current base of Internet users, now
  estimated at over 10 million individuals.


OTHER:
*  Unix based document management software.  
*  Ethernet cards and cabling.
*  Used PCs (286 or greater processor), monitors and printers.
*  Used modems (any variety).



III.  ***** HOW YOU CAN HELP *****

For the past 16 issues, the LymeNet Newsletter has provided you with timely
information about LD.  We have been able to provide this publication as a
public service, with little or no cost to you.  


The National LymeNet is the next step, but WE NEED YOUR HELP TO ACCOMPLISH
OUR GOALS.  You can help by:


1. Donating cash or products/services.
2. Finding out if your company (or other interested company) can donate
  cash or products/services.  If this is feasible, call the Lyme Disease
  Network and provide us with the name and business address of the
  individual in charge of donations.  We will send that person a LymeNet
  informational kit.
3. Relaying this information to other interested individuals.


The Lyme Disease Network can be reached at:
  43 Winton Road
  East Brunswick, NJ  08816-4194
  908-390-5027 (voice)
  908-238-8292 (FAX)


All contributions to the Lyme Disease Network of NJ, Inc. are tax deductible.

If you have any technical questions, you can contact me via e-mail
(mcg2@Lehigh.EDU), FAX (215-974-6410) or phone (908-789-7346).


Thanks for hearing us out.  We hope to hear from you soon.

-Marc Gabriel
Editor, The LymeNet Newsletter
Computer Systems Manager, The Lyme Disease Network of NJ



VI. ***** HOW TO SUBSCRIBE, CONTRIBUTE AND GET BACK ISSUES *****

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-----------------------------------------------------------------------------
LymeNet - The Internet Lyme Disease Information Source
-----------------------------------------------------------------------------
Editor-in-Chief: Marc C. Gabriel <mcg2@Lehigh.EDU>
           FAX: 215-974-6410
Contributing Editors: Carl Brenner <brenner@lamont.ldgo.Columbia.EDU>
                     John Setel O'Donnell <jod@Equator.COM>
Advisors: Carol-Jane Stolow, Director
         William S. Stolow, President
         The Lyme Disease Network of New Jersey (908-390-5027)
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