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Volume: 1
Issue: 25
Date: 09-Nov-93


Table of Contents:

LETTER: Underreporting, By Dr. David T. Dennis
RESPONSE TO LETTER: By Editors of the LymeNet Newsletter
LYMENET NEWS: Steere To Insurers: Use Case Definition For Diagnosis
NEW YORK TIMES: Letter: Lyme Disease And Lesson of AIDS
NEWSDAY: Lyme Case Postponed; Insurer Reviews Decision to Cut Off
         Treatment
ANNOUNCEMENT: LD Telephone Support Group in NJ


Newsletter:

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*                  Lyme Disease Electronic Mail Network                     *
*                          LymeNet Newsletter                               *
*****************************************************************************
                     Volume 1 - Number 25 - 11/09/93


I.    Introduction
II.   Letters to the Editor
III.  Response
IV.   News from the Wires
V.    Announcements
VI.   Jargon Index
VII.  How to Subscribe, Contribute and Get Back Issues



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

In issue #16, we described the National LymeNet project.  The National
LymeNet will bring physicians, researchers, and support group leaders
together electronically to put the pieces of the LD puzzle together.
We asked for donations to fund the construction and installation of the
National LymeNet.  I am pleased to report the construction phase of the
project is nearly complete.


As it stands now, the system will be accessed via conventional modems.  
However, the National LymeNet is designed to be connected to the Internet.
Unfortunately, we still need a physical link to the Net.  If you can help
us get tied to the Internet, please contact me.


We will unveil the system at Lehigh University on December 7 at
7:30pm.  The presentation is open to the public.  If everything proceeds
according to plan, we will begin the final system testing phase in
January and begin accepting applications for accounts one month later.
While the pricing policy has not yet been established, The Lyme Disease
Network does not intend to charge support groups for this service.


If you would like to attend the December 7 presentation, please RSVP to
the Lyme Disease Network at 908-390-5027.  A light buffet and refreshments
will be served.


Now... onto the Newsletter!  Highlights of this issue include:

 * A letter to the editor submitted by Dr. David Dennis of the CDC
 * A response to Dr. Dennis' letter by the editors of the LymeNet Newsletter
 * A special report on what Dr. Allen Steere is telling insurers


-Marc.


II. ***** LETTERS TO THE EDITOR *****

To the Editor:

As the editor of a widely distributed source of information on Lyme disease,
is it important that your editorial comments be responsible and accurate.
In your _LymeNet Newsletter_ of 5/24/93 you state that "...David Dennis
*finally* admits that Lyme disease is under-reported.  I believe this is a
first."  To the contrary, I repeatedly and consistently acknowledged
that under-reporting occurs.  In addition to numerous quotes in newspaper
articles, and in radio and television interviews, statements to this effect
have been made by me in several scientific publications (JAMA, 1991, V266:N9;
p1269-70; MMWR, 1993, V42/No18; p345-348; Mosby Year Book (Epidemiology),
1993, p27-37).  These References are enclosed.


Thank You.

Sincerely,

David T. Dennis, M.D., M.P.H.
Chief, Bacterial Zoonoses Branch
Division of Vector-Borne Infectious Disease
National Center for Infectious Diseases
Centers for Disease Control
Fort Collins, Colorado



III. ***** RESPONSE BY THE EDITORS OF THE LYMENET NEWSLETTER *****

                                                        November 1, 1993

Dear Dr. Dennis,

Thank you for responding to issue 11 of the LymeNet Newsletter.  The editors
of the LymeNet Newsletter strongly encourage readers to report
inaccuracies that may occur in the publication.


You stated in your letter that you have always maintained that Lyme disease
is under-reported as reported in  both the scientific and lay literature.  
Your correspondence included three medical and epidemiological publications
in which you acknowledge the problem.  Thank you for bringing those articles
to our attention.


However, after numerous mass media database searches, we have failed to find
any occurrence of you stating that LD is under-reported before May of 1993.  
Indeed, after an exhaustive search of all mass media articles in the Nexis
and Dow Jones News Service libraries in which you are quoted, we are unable
to find a single article, transcript, or other source where you acknowledge
the problem.  We were also unable to find any such references in our
personal media libraries.


Of course computer databases do not carry all media articles that have ever
appeared, but they do present a good cross section of the materials printed
and broadcast across the country.  In light of your many appearances and
quoted statements in these articles, we believe it is significant that
you have never been quoted as acknowledging the problem of under-reporting.


Moreover, you consistently maintain that CDC numbers are for epidemiological
purposes and should not be used for determination of treatment.  In a
recently published paper in the Annals of Internal Medicine entitled "Empiric
Parenteral Antibiotic Treatment of Patients with Fibromyalgia and Fatigue
and a Positive Serological Result for Lyme Disease: A Cost-effectiveness
Analysis," [1] Lightfoot et al used incidence figures from a 1987 and 1988
paper by Tsai et al called "National Surveillance of Lyme disease."  [2]  
Upon reading this Tsai paper, we found that it used CDC figures.  
Thus, Lightfoot's entire cost-effectiveness analysis is based on CDC numbers.


The analysis concludes that, since the incidence of LD is so low as compared
to the incidence of fibromyalgia in the general population, patients with
"non-specific" myalgia or fatigue and a positive titer should not be treated,
unless a patient is excessively worried about the risk of LD.  These results
are compromised by the misuse of CDC figures.


We don't believe the authors of this analysis are ignorant of your
guidelines.  Indeed, well known researchers such as Dr. Benjamin Luft, Dr.
Allen Steere and Dr. Leonard Sigal are on the list of authors.  Clearly,
they have chosen to ignore the CDC disclaimers.


This is not the first time CDC numbers have been abused.  Indeed, ignorant
reporters routinely exchange the phrases "number of reported cases" for
"number of cases," confusing the public and making it difficult for
politicians to justify increased budgets for LD.


To aggravate the situation, several reporters have started "investigating"
what they perceive to be Lyme "scandals."  They believe that, since only
10,000 cases of LD occur every year and many more are being administered
antibiotics, these "other" patients don't have LD.  Indeed, many of these
reporters received their cues from Dr. Allen Steere's recently published
paper in JAMA entitled "The Overdiagnosis of Lyme Disease." [3]  
Unfortunately, as they understand it, CDC numbers are affirming Steere's
highly subjective paper.


The CDC should uphold its positions.  The official position of your agency
is irrelevant if it is not effectively communicated and enforced.  We ask
that you:


1. Write to the Annals of Internal Medicine to expose the misuse of CDC
data in the Lightfoot paper.


2. Write to the authors of the Lightfoot paper and make the CDC's position
on use of epidemiological figures for diagnosis and treatment clear.


3. Release of all CDC figures on LD to the media with a comment about the
extensive under-reporting problem.  


We are pleased that the CDC opposes the use of their epidemiological figures
for diagnosis and treatment.  However, the CDC does not treat patients.  
The physicians who do routinely read journal analyses and media reports that
misuse your agency's figures.  We urge you to highlight and correct
these abuses.


Sincerely,


The Editors of the LymeNet Newsletter.
Marc Gabriel
Carl Brenner
Frank Demarest
John O'Donnell


[1] Lightfoot, RW et al "Empiric Parenteral Antibiotic Treatment of Patients
with Fibromyalgia and Fatigue and a Positive Serological Result for Lyme
Disease," Ann Internal Med 1993;119:503-509.


[2] Tsai TF et al "National Surveillance of Lyme disease, 1987-1988"
Conn Med 1989;53:324-6.


[3] Steere AC et al  "The Overdiagnosis of Lyme Disease," JAMA 1993;
269:1812-1816.



IV. ***** NEWS FROM THE WIRES ******

HEADLINE: STEERE TO INSURERS: USE CASE DEFINITION FOR DIAGNOSIS
SOURCE: LymeNet News
BYLINE: By Marc Gabriel


In a recently published document written for insurance company medical
directors, Dr. Allen Steere of Tufts University School of Medicine urges
readers to use the CDC's Lyme disease National Surveillance Case Definition
to diagnose patients.  The CDC has repeatedly stated that this very
restrictive definition should not be used for diagnosis.


In a copy of the "Transactions of the American Academy of Insurance Medicine"
(101st Annual Meeting) obtained exclusively for the LymeNet Newsletter by
Contributing Editor Frank Demarest, Dr. Steere uses a table format to list
the case definition criteria.  The title of that table is:
            Lyme Disease National Surveillance Case Definitions
                     Clinical Criteria for Diagnosis


According to Kenneth Fordyce, Chairman of the New Jersey Governor's Lyme
Disease Advisory Council, the CDC denies insurance companies misuse the
case definition.  He calls the CDC's attitude towards such abuses
"non-benign neglect" and says he warned the CDC of such misuses in the
past.  The agency has apparently failed to take any action.


In the article, Dr. Steere wastes no time to present his controversial
assertions.  In sentence number 4 of the 9 page document, he writes:
"All stages of the infection may usually be treated successfully with 10-
to 30- day course of oral or intravenous antibiotic therapy..."


Dr. Steere apparently dismisses seronegativity, maintaining that positive
serology is a requirement for diagnosis.  He also spends a considerable
amount of time discussing over-diagnosis, referring to his now thoroughly
discredited over-diagnosis analysis.


The 101st Annual Meeting of the American Academy of Insurance Medicine
took place at the Westin Hotel at Copley Palace in Boston, MA, in September
1992.  The "Transactions" were printed earlier this year by Klay Printing of
Tampa, FL.


*****=*****

HEADLINE: LETTERS TO THE NEW JERSEY EDITOR; Lyme Disease And Lesson of AIDS
SOURCE: The New York Times
DATE:  October 31, 1993, Sunday, Late Edition - Final
SECTION: Section 13NJ; Page 11; Column 2; New Jersey Weekly Desk


The first case of what is now known as AIDS was reported in 1981.  Since
that time, the AIDS surveillance case definition has been changed several
times, and expanded to include more recently recognized entities.


Again, in late 1992 it was revised to delineate stages affecting management.
The end result of this process is a broader case definition, making treatment
accessible to many more.


Unfortunately, this has not been the case with Lyme disease.  With the
number of cases burgeoning in the endemic areas, the stringent and rigidly
affixed diagnostic criteria negate all but the most ideal of cases.


One really has to wonder what the agenda is here.  Is it to expand and
extrapolate from the current theories to better scientifically describe the
clinical observations?  Or is it to eliminate the epidemic by invalidating
the patients?


Hopefully, the medical/research community will learn the lesson from the
evolution of the AIDS definition, approach Lyme disease with a scientific
open-mindedness and stop denying treatment to many who desperately need it.

DEBORAH AMDUR, M.D.
Livingston


*****=*****

HEADLINE: Lyme Case Postponed; Insurer reviews decision to cut off treatment
SOURCE: Newsday
DATE: October 2, 1993, Saturday, NASSAU AND SUFFOLK EDITION
SECTION: NEWS; Pg. 11


U.S. District Court Judge Leonard Wexler yesterday postponed a full hearing
on the case brought by a Lyme disease patient against her insurance company
for cutting off payments for her daily dosage of intravenous antibiotics.


A lawyer for the insurer, Prudential/Sears, argued the company was completing
a review of the case that could change its decision to demand repayment from
Kathleen Zisel of Melville for $60,000 worth of medication.  After Zisel had
been treated for half a year, the insurance company informed her that
treatment beyond four weeks is considered "medically unnecessary," and,
therefore, is not covered.


"It seems particularly inappropriate to jump into the case now and
intervene," said Morristown, N.J. lawyer Charles Reid. "Clearly, we are in
the middle of the process."


But Zisel's lawyers, arguing that Prudential/Sears had made up its mind when
it cut off payment for Zisel's supply of the antibiotics July 2, persuaded
Wexler to order the resumption of treatment until a hearing tentatively
slated for next week.  Wexler said he would schedule the hearing as soon as
he received Prudential/Sears' final decision.


"This woman has been off her medication for seven weeks. She is
deteriorating," said Laura Jones, a Manhattan lawyer representing Zisel.


But even though most of the contested issues were postponed until next week,
yesterday's hearing illustrated why both Lyme disease advocates and insurance
companies view Zisel's case as a potential landmark.  "If Kathleen's
treatment is denied, it is going to set a precedent for other companies to
do the same," said Judi Hanson, the facilitator of a Lyme disease support
group of 300 people in Northport.  She said more and more patients are
getting their bills rejected by insurance companies.


Before a courtroom of Lyme treatment advocates wearing green ribbons, she
said they were prepared to start a courtroom battle over the medically
unproven treatment of prolonged antibiotics for Lyme patients which can cost
up to $1,400 a week.  Zisel said the treatments enabled her to walk again,
and relieved sudden and frequent blackouts tied to the disease.


Prudential/Sears, agreeing with an array of established Lyme disease
researchers and specialists who worry about the efficacy and potential side
effects from the antibiotics, said it was willing to pay only for four weeks
worth of treatment. Zisel and her husband, Robert, say they did not know the
company's policy because it marked six months worth of bills merely as
"pending."


But the Zisels' representatives said they have plenty of doctors who feel
strongly that prolonged antibiotics are the only way to effectively relieve
the debilitating symptoms of Lyme disease.



V. ***** ANNOUNCEMENTS *****

Sender: The Lyme Disease Network of NJ
Subject: Telephone Support Group


A homebound Lyme patient in Middlesex County, NJ, has expressed interest in
forming a LD telephone squad.  Anyone interested in joining a "telephone
support group" can do so by contacting Carol Stolow at the Lyme Disease
Network of New Jersey at 908-390-5027.



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 *****

SUBSCRIPTIONS:
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in the body, type:
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CONTRIBUTIONS:
Send all contributions to   LymeNet-L@Lehigh.EDU  or FAX them to 215-974-6410.
All are encouraged to submit questions, news items, announcements, and
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BACK ISSUES: Available via 2 methods:
1. E-Mail:
  Send a memo to    listserv@Lehigh.EDU
  in the first line of the body, type:
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  example:  get LymeNet-L/Newsletters 1-01     (will get vol#1, issue#01)
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Editor-in-Chief: Marc C. Gabriel <mcg2@Lehigh.EDU>
           FAX: 215-974-6410
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)
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