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Volume: 1
Issue: 23
Date: 04-Oct-93


Table of Contents:

ANNOUNCEMENT: Letters Sought to Greet Dr. Gasser
ANNOUNCEMENT: NJ Devils Fund-raiser for Pediatric Lyme Foundation
LYMENET NEWS: Chronic LD Patient Wins Injunction Against Insurer in
              Court
NEWS: Doubting Doctors 'Drove Rare Disease Woman To Suicide'
ABSTRACT: (Proc Natl Acad Sci) Isolation and Transmission of the Lyme
          Disease Spirochete from the Southeastern United States
LETTER: Health Care Choice, by Janice Beers
BIBLIOGRAPHY: Listing of Several Interesting Publications


Newsletter:

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*                  Lyme Disease Electronic Mail Network                     *
*                          LymeNet Newsletter                               *
*****************************************************************************
                     Volume 1 - Number 23 - 10/04/93


I.   Introduction
II.  Announcements
III. News from the Wires
IV.  Op-Ed Section
V.   Partial Bibliography for Further Reading
VI.  Jargon Index
VII. How to Subscribe, Contribute and Get Back Issues



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

Since our review of Karen Angotti's "Lyme Disease: A Mother's Perspective"
and Denise Lang's "Coping with Lyme Disease," (issue #20) some individuals
have reported problems obtaining these volumes.  According to the publisher,
the first run of "Coping" is sold out.  If you can't get a copy from your
bookstore, you may send a check for $12.95 per copy plus $1.50 S/H for the
first copy ($.50 S/H for additional copies) to:
  Director of Special Sales
  Henry Holt and Co.
  115 West 18th Street
  New York, NY  10011


The Angotti book can also be ordered from the publisher, by sending $5.95
(plus $2 S/H) to:
  Anerak Publications
  Box 1822
  Cordova, TN  38018-1822
The cost for more than 6 books is $5.00 a piece, S/H included.


This issue of the newsletter brings together information from a wide
spectrum of sources.  Among the topics:


* Stephen Nostrom of the Lyme Borrelia Outreach seeks postcards from
 around the country to show a visiting researcher the high incidence of LD
 in the US.  
* The NJ Devils hosts a fundraiser for the Pediatric Lyme Foundation.
* A chronic LD patient sues her insurer on Long Island.  
* Dr. Allen Steere writes a review about LD diagnosis and treatment for the
 insurance industry.
* Janice Beers expresses her opinion of President Clinton's proposed health
 plan and its implications for LD patients.


-Marc.

CORRECTION: In the last issue of the newsletter we reported the incidence
of LD in Lyme, CT, in Frank Demarest's investigation of MS in Wallingford.
Unfortunately, during the final editing process a space character was
misplaced, changing the numbers.  Lyme reported 26 cases last year, which
translates to an incidence of 1,334/100,000.  I apologize for any
inconvenience or misunderstanding.



II. ***** ANNOUNCEMENTS *****

SENDER: The Lyme Borrelia Outreach
SUBJECT: Letters of Support to Greet Visiting Scientist


Dr. Robert Gasser from the Lyme Borreliosis Study Group in Graz, Austria,
will be the guest on Stephen Nostrom's "Lyme Borrelia Outreach" television
program this month.  LBO is syndicated across the country through local
cable companies.


Stephen is asking Lyme patients from around the country to send in postcards
to show Dr. Gasser the extent of the LD problem in the United States.  
He hopes to cover the entire studio with correspondence.  The program will
be distributed to over 400 LD support groups nationwide.


If you would like to help, please send a postcard with a brief description
of your case to:    Lyme Borrelia Outreach
                   Attn: Stephen Nostrom
                   P.O. Box 496
                   Mattituck, NY  11952


Questions?  Call:   (516) 298-4074  or
                   (516) 298-9606  or
                   (800) 858-7308


=====*=====

SENDER: The Pediatric Lyme Foundation
SUBJECT: NJ Devils Fundraiser


                            WHACK VS. QUACK
   "The Battle Against Lyme Disease In Children Begins October 20"


On Wednesday October 20, net proceeds from the game between the NJ
Devils and the Anaheim Mighty Ducks will benefit the Pediatric Lyme
Foundation's research fund.  To order tickets, use the form below or
call the Foundation at 201-292-0277.


--------------------------------------------------------------------------
                              ORDER FORM
            Enclose Check or Money Order and Make Payable to:
          **** PEDIATRIC LYME FOUNDATION -- RESEARCH FUND ****
     (All ticket holders for this game will be eligible to win a
                       Disneyland vacation.)


MAIL TO:                            EVENT INFORMATION
  Pediatric Lyme Foundation          NJ Devils vs. Anaheim Mighty Ducks
  Suite 156                           Wednesday, October 20, 1993
  103 Washington Street               Brendan Byrne Arena
  Morristown, NJ  07960               East Rutherford, NJ
  201-292-0277                     GAME TIME: 7:35 pm


NAME:______________________________ TELEPHONE #: (_____)_______________

ADDRESS: ______________________________________________________________

CITY: ____________________   STATE: ____________   ZIP: _______________

# OF TICKETS: ____________ @ $25 = TOTAL AMOUNT ENCLOSED: _____________

I am unable to attend, but please find the enclosed contribution $_____

   ALL NET PROCEEDS FUND PEDIATRIC LYME DISEASE RESEARCH PROJECTS.
All contributions are tax deductible to the full extent allowed by law.
             Fair market value of the evening is $15.00.
--------------------------------------------------------------------------



III. ***** NEWS FROM THE WIRES ******

HEADLINE: Chronic LD Patient Wins Injunction Against Insurer in Court
DATE: October 2, 1993
SOURCE: LymeNet News
BYLINE: By Marc Gabriel


A chronic Lyme patient won a temporary injunction against Prudential
insurance last Friday to resume her antibiotic treatment cut off since
July 2.  Judge Leonard Wexler in Hauppauge (NY) federal court ordered
Prudential to pay for Kathleen Zisel's treatment until her suit against the
insurer is settled.  Court proceedings are scheduled to resume later this
week.


One of the physicians familiar with her case, Dr. Perry Orenf of Great Neck,
NY, says Zisel was "90% recovered" before her treatment was suspended.
Zisel relapsed shortly after her antibiotic course was stopped.  Prudential's
official position is that more than 4 weeks of intravenous treatment is
"medically unnecessary."  Furthermore, they informed Zisel the suspension was
retroactive, leaving her with $60,000 in medical bills.  She is seeking
continued treatment and reimbursement for the medical costs.


Stephen Nostrom of the Lyme Borrelia Outreach in Mattituck, NY, was in the
courtroom on Friday.  He called the case "precedent setting."  He encourages
patients and supporters to attend the proceedings this week.


=====*=====

HEADLINE: DOUBTING DOCTORS 'DROVE RARE DISEASE WOMAN TO SUICIDE'
SOURCE: Press Association Newsfile
DATE: October 1, 1993, Friday


Teacher Hilary Skinner killed herself because doctors refused to believe
she was suffering from a rare disease, an inquest heard today.  Mrs Skinner,
43, became ill after being bitten by an insect while she lived in Canada.  
Her husband Mark claimed British doctors who had never heard of her condition
thought she was making the story up - but an American specialist confirmed
last August that she had contracted the unusual illness.  


His wife died from carbon monoxide poisoning as she sat in her car last March -
a hosepipe from the exhaust led into the vehicle, which was parked outside
her home in Ponteland, Northumberland.  Alongside her body was a note saying:
"I can't live without my health."  Newcastle upon Tyne coroner Leonard Coyle
heard Mrs Skinner was bitten by a Lyme tick while living in Vancouver,
Canada, in 1984.  The insect lives in heavily wooded areas and its bite can
cause Lyme Disease which affects the nervous system.  Mrs Skinner was taken
ill almost immediately and the couple returned to Britain for treatment.  
Mr Skinner, a publishing company executive, said: "Nobody appeared to be
interested in her case and treated her as just a neurotic woman.  "She told
any number of doctors what she thought but they wouldn't believe her and
fobbed her off with anti-depressants.  


"If they had done some research they would have found that Lyme Disease is
hard to detect in its final stages but they weren't prepared to look for
something they had not heard about."  US consultant Dr Elliott Frank
diagnosed Lyme Disease when Mrs Skinner went to America last year, the
hearing was told.  "Hilary was right all the time but the doctors here still
wouldn't believe her and she changed from a vibrant woman into someone whose
appearance and energy went into rapid decline," said Mr Skinner.  Pathologist
Dr Nigel Cooper told the hearing: " Lyme Disease is something not seen very
often in this country but I do know it can affect the brain and heart."


=====*=====

TITLE: Isolation and transmission of the Lyme disease spirochete from the
      southeastern United States.
AUTHORS: Oliver JH Jr; Chandler FW Jr; Luttrell MP; James AM; Stallknecht DE;
      McGuire BS; Hutcheson HJ; Cummins GA; Lane RS
ORGANIZATION: Institute of Arthropodology and Parasitology, Georgia Southern
      University, Statesboro 30460.
REFERENCE: Proc Natl Acad Sci U S A 1993 Aug 1; 90 (15): 7371-5


ABSTRACT:
The isolation of the Lyme disease spirochete (Borrelia burgdorferi) from
the southeastern United States is reported.  Three isolates, two from cotton
mice (Peromyscus gossypinus) and one from the black-legged tick (Ixodes
scapularis), were recovered from Sapelo Island, Georgia, in July and
September 1991. The spirochetes were characterized by indirect fluorescent
antibody assay using a battery of five monoclonal antibodies, by sodium
dodecyl sulfate/polyacrylamide gel electrophoresis (SDS/PAGE) of whole cell
lysates, and by the polymerase chain reaction (PCR) assay using primers for
three DNA target sequences found in B. burgdorferi reference strain B-31.
Transmission experiments indicate that the three Georgia isolates can infect
experimentally inoculated hamsters and mice.  Tick transmission of one of
the isolates has been attempted so far; I. scapularis transmitted isolate
SI-1 from hamsters to mice, but the lone-star tick, Amblyomma americanum,
did not.



VI. ***** OP-ED SECTION *****

On September 23, Janice Beers, founder of the Lyme Disease Association
of the United States, sent the following letter to President Clinton,
Surgeon General Joycelyn Elders, Secretary of HHS Donna Shalala, Sen.
Kennedy and other Senators and Representatives in Congress:
--
The issue of most concern to me about President Clinton's health care
proposal is CHOICE -- OF PHYSICIANS.  I and others with Lyme disease
cannot risk being limited to any group of physicians, especially not if we
are limited to local physicians or even those in our state.


Dr. Joseph McDade from the Centers for Disease Control and Prevention in
Atlanta testified at the hearing of the Senate Labor and Human Resources
Committee August 5:  The principal problem with Lyme disease in this country
is the failure to recognize it on the part of the average physician.


This bacterial disease is difficult to diagnose and hard to treat once
it has progressed beyond the initial localized infection.  The Centers for
Disease Control has shown that the serolo[gical] tests for it are
unreliable.  Patients often have gone to many physicians, sometimes to
tens of physicians near and far, before a diagnosis is made and antibiotic
treatment started.


If patients with disseminated disease have to depend upon "gatekeeper"
primary care physicians to make a diagnosis or to refer them to the few
physicians who can and will, the diagnosis is unlikely to made.  Antibiotic
treatment will not start, so the disease will inexorably progress with
devastating, disabling physical results and looming financial and family
crisis.  The new system will have caused the disasters it is supposed to
prevent.


Others with difficult-to-diagnose or rare diseases will face similar
disasters.


It is vital that those in this country with Lyme disease or suspected Lyme
disease be allowed to choose the relatively few physicians in this country
(1) who can diagnose the disease once the bacteria are disseminated
through the body and (2) who will treat long-term, the months or years it
often takes, to reduce or eliminate the symptoms.


Thank you for your attention.  

Sincerely yours,

Janice I. Beers, J.D.

Addresses:
      President William J. Clinton         Joycelyn Elders, M.D.
      The White House                      Surgeon General
      Washington, DC  20500                U.S. Public Health Service
                                           5600 Fishers Lane, Rm 1866
                                           Rockville, MD  20857


      Senator Edward Kennedy               Ms. Donna Shalala
      Chairman, Labor and Human            Secretary of HHS
        Resources Committee                200 Independance Ave. SW
      United States Senate                 Washington, DC 20201
      Washington, DC  20510


      Senator _____________                Representative _____________
      United States Senate                 US House of Representatives
      Washington, DC  20510                Washington, DC  20515



V. ***** PARTIAL BIBLIOGRAPHY FOR FURTHER READING *****

We have two citations this week.  In the first, Dr. Allen Steere presents
his views to the Association of Life Insurance Medical Directors of
America.  Secondly, Dr. Brian Fallon discusses neuropsychiatric
complications of LD.


AU  - Steere AC
TI  - Lyme disease.
RF  - REVIEW ARTICLE: 20 REFS.
AD  - Tufts University School of Medicine.
MH  - Antibiotics/ADMINISTRATION & DOSAGE/THERAPEUTIC USE
MH  - Human
MH  - *Lyme Disease/COMPLICATIONS/DIAGNOSIS/EPIDEMIOLOGY/THERAPY/
      TRANSMISSION
MH  - Population Surveillance
PT  - JOURNAL ARTICLE
PT  - REVIEW
PT  - REVIEW LITERATURE
LA  - Eng
SO  - Trans Assoc Life Insur Med Dir Am 1993;76:73-81


AU  - Fallon BA Nields JA Parsons B Liebowitz MR Klein DF
TI  - Psychiatric manifestations of Lyme borreliosis.
AD  - Department of Psychiatry, College of Physicians and Surgeons,
      Columbia University, New York, NY.
AB  - BACKGROUND: Lyme borreliosis (Lyme disease), a tick-borne
      spirochetal illness, has later manifestations that may include
      arthritic, neurologic, ophthalmologic, and cardiac symptoms.
      Recent reports suggest psychiatric symptoms may also be part of
      the clinical picture. METHOD: Using a structured interview
      (SCID), we interviewed three patients who had developed a
      psychiatric disorder for the first time after infection with
      Borrelia burgdorferi. RESULTS: During Lyme borreliosis, one
      patient had major depression and panic disorder, one patient had
      an organic mood syndrome with both depression and mania, and the
      third patient had panic disorder. These disorders remitted after
      adequate antibiotic treatment. CONCLUSION: While depression has

      been previously linked to neuroborreliosis, this is the first
      report to link panic disorder and mania with borrelial infection.
      Because of the rapid rise of Lyme borreliosis nationwide and the
      need for antibiotic treatment to prevent severe neurologic
      damage, mental health professionals need to be aware of its
      possible psychiatric presentations.
MH  - Support, U.S. Gov't, P.H.S.
SO  - J Clin Psychiatry 1993 Jul;54(7):263-8



VI. ***** 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
     shape.
Western Blot - A more precise antibody test.



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

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Editor-in-Chief: Marc C. Gabriel <mcg2@Lehigh.EDU>
           FAX: 215-974-6410
Contributing Editors: Carl Brenner <brenner@lamont.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)
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