LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Newsletter Volume 1 Issue 15 LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Home LymeNet Newsletter Library

Volume: 1
Issue: 15
Date: 12-Jul-93


Table of Contents:

ABSTRACT: (J Exp Med) MedImmune's Lyme Disease Vaccine
NEW YORK TIMES: Letter: Lyme Disease Can Disable Adults and Children
ABSTRACT: (Science) The Biological and Sociological Phenomenon of
          Lyme Disease
QUESTION: Intestinal Problems and LD
ANSWER: Intestinal Problems and LD
QUESTION: Gestational Lyme borreliosis
QUESTION: Is this worth checking out?
QUESTION: Transmission of Lyme Disease by intercourse?
ANSWER: Optic Neuritis and LD
BIBLIOGRAPHY: Listing of several interesting publications


Newsletter:

*****************************************************************************
*                  Lyme Disease Electronic Mail Network                     *
*                          LymeNet Newsletter                               *
*****************************************************************************
                     Volume 1 - Number 15 - 7/12/93


I.   Introduction
II.  News from the wires
III. Questions 'n' Answers
IV.  Partial Bibliography for Further Reading
V.   Jargon Index
VI.  How to Subscribe, Contribute and Get Back Issues



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

This issue begins with three items from the news wires.  In the first news
item we learn that MedImmune, Inc., (Gaithersburg, MD) is working on a LD
vaccine.  Connaught Labs (Swiftwater, PA) seems to be ahead in the
development process of their vaccine (see vol#1, #13).


If you have seen recent issues of the New York Times, you are probably aware
of the front page article on Lyme disease (June 15) which heavily quoted Dr.
Allen Steere of Tufts University.  Predictably, the article provoked a
strong reader response.  On July 1, the NYT printed a response by Dr.
Deborah Amdur (featured below).  Thanks to Dr. Amdur for reprint permission.


_Science_ recently published a paper by Babour and Fish on the "Biological
and Sociological" aspects of this epidemic.  While no new breakthroughs were
reported, it is interesting to note how the authors appear to be on "both
sides of the fence" with regard to the LD debate.  The abstract is enclosed.


I still haven't heard anything officially from the CDC with regard to the
meeting convened to consider changes to the National Case Definition.  The
only news I have received (unofficial) indicates that no changes will be made
to the current definition.  


-Marc.

FACTOID:  According to the Board of Education of Jackson, NJ, 1% (one percent)
of the high school students in that district are currently receiving "special
attention" (i.e. at home instruction, tutoring, etc.) due to LD (as of the
last day of the school year).  This figure does not include the students who
are ill but not receiving "special attention," the undiagnosed and
misdiagnosed students, and the students who are cured or symptom-free.  This
data would suggest that the epidemic among teenagers in Jackson exceeds 1,000
per 100,000 population.



II. ***** NEWS FROM THE WIRES ******

HEADLINE: MedImmune's Lyme Disease Vaccine
SOURCE: J Exp Med, 7/1/93, p197-209
ABSTRACT:
MedImmune's recombinant BCG vaccine technology was shown to prevent Lyme
disease infection in a mouse model.  This vaccine has been genetically
engineered to present the other surface protein A (OspA) antigen of Borrelia
Burgdorferi to the immune system in a highly immunogenic format and thereby
to confer immunity to the disease itself.  MedImmune has developed this
vaccine for use in humans and expects to submit and IND in late 1993 to begin
clinical trials.


=====*=====

HEADLINE: Lyme Disease Can Disable Adults and Children
SOURCE: The New York Times
SECTION: Editorials/Letters, p A18
DATE: Thursday, July 1, 1993


To the Editor:
I applaud you for finally giving Lyme Disease the front-page status that this
disabling disease of epidemic proportions deserves ("Flaws Are Seen in
Diagnosis and Control of Lyme Disease," June 15).


The irony is that you quote only Dr. Allen Steere, director of rheumatology
and immunology at Tufts New England Medical Center, who represents but one
end of the spectrum.  Dr. Steere's definition of the disease applies to a
minuscule portion of the many who are afflicted with the illness, those who
have "Steere-friendly" spirochetes where the bacteria obviously abide by his
rules.


Yet the greater reality is that there is a preponderance of cases where the
spirochete clearly has not signed his contract -- the sequester in cells,
cause relapses and require prolonged antibiotic treatment for management or,
if one is exceedingly lucky, cure.  Please ask those physicians fighting in
the trenches who have seen the disabled adults and children robbed of their
childhood.


As a parent whose child had Lyme disease, should I have told her when the
fatigue was so profound that she was unable to leave her bed that this
symptom did not exist, and therefore she could get up and walk?


Hardly.

As a physician trained in an academic institution, I find the defensiveness,
denial and refusal of Dr. Steere and his colleagues to recognize what is,
rather than what fits their disease paradigm, both frightening and
destructive.


Deborah Amdur, M.D.
Livingston, NJ, June 24, 1993


=====*=====

TITLE: The Biological and Sociological Phenomenon of Lyme Disease
SOURCE: Science, 260:1610-1616 (11 June 1993)
AUTHOR: Alan G. Babour and Durland Fish
ABSTRACT:
Lyme disease, unknown in the United States two decades ago, is now the most
common arthropod-borne disease in the country and has caused considerable
morbidity in several suburban and rural areas.  The emergence of this disease
is in part the consequence of the reforestation of the northeastern United
States and the rise in deer populations.  Unfortunately, an accurate
estimation of its importance to human and animal health has not been made
because of difficulties in diagnosis and inadequate surveillance activities.
Strategies for prevention of Lyme disease include vector control and
vaccines.



III. ***** QUESTIONS 'N' ANSWERS *****

Sender: Penny.Solin@eng.sun.com (Penny Solin)
Subject: need input


Hi -
My mother has been suffering from Lyme's disease for at least the
past 4 years.  Has anyone out there been suffering from intestinal
problems as a symptom of Lyme's disease?  Is anyone in the medical
community investigating intestinal disorders as a symptom of Lyme's
disease?


On another note, has anyone explored areas of holistic medicine as
a way to treat Lyme's disease?  I would be interested in any input
anyone has to offer.


Thanks for your help and interest,
--
Ed.  There was considerable interest in LD associated GI disorders at the
Atlantic City Conference in May.  Dr. Martin Fried, Director of Pediatric
Gastroenterology and Nutrition at the Jersey Shore Medical Center, spoke
at the Conference this topic.  Unfortunately, there does appear to be many
major publications on this topic.  If anyone is aware of such a publications,
please let us know.


=====*=====

Sender: carolb@latte.kdsi.com (Carol Broverman)
Subject: Lyme disease newsletter


My sister is quite sick with advanced Lyme and two of her children are
also diagnosed with Lyme (one in late stages, the other is 5 mos old and was
infected in utero while she was untreated.


I am particularly interested in obtaining any information about studies
done on children who were infected in utero while the mother was NOT being
treated. The baby seems healthy otherwise right now, but they are worried
about possible development effects. Can anyone help me find more information
on this?


Thank you, and I greatly appreciate the service you are providing.
--
Ed. The Lyme Disease Foundation (Tolland, CT) is an excellent source of
information on this subject.  They can be contacted at 800-886-LYME.  
In addition, one of the better papers on this issue is cited in the Further
Reading section below.


=====*=====

Sender: pgh@cs.brown.edu (Paul Howard)
Subject: Is this worth checking out?


Last Friday or Saturday (I don't remember which) I noticed a small dark red
bump 8 cm above my right knee (like a blood blister).  On Sunday afternoon
I began to develop a sore throat, with some difficulty talking, like
laryngitis.  On Monday I (probably unwisely) broke the blood blister.  Monday
evening I was exhausted (after no particularly hard labor and more or less
normal sleep), and slept for an hour after dinner (which I seldom do).  On
Tuesday a small (1 cm diameter) red ring developed around the spot.  A ring,
not a disk -- only the outer part was red, the inner part was normal skin
color, except for the sore part in the middle.  The ring went away within 8
hours.  The sore throat/difficult in talking symptoms had recurred on Monday,
and worsened on Tuesday and Wednesday, with minor body achiness; the
combination made it difficult but not impossible to concentrate on my work.  
Today my throat is somewhat better, though not 100 percent.


We live in an area where ticks are not unheard of.  We have to remove about
one a year from my daughter.  On Saturday we did go for a walk through a
lightly wooded area.


Is this worth doing anything about, and if so, what?  To slightly complicate
the issue, I do not have a family doctor, since I have been a graduate
student for the last six years, going to the student health service when
necessary, but now that I have graduated, I am not eligible for the student
health service.  If I should see someone, would one of those walk-in clinics
be OK?


Sorry to be so long-winded.  Lyme disease makes me (and lots of other people)
paranoid.  Thanks for any advice.
--
Ed. This question was submitted several weeks ago (sorry for the long delay).  
The reader reports that he has since seen a physician.  Additional feedback
is always welcome.


=====*=====

Sender: hunter@s07.es.llnl.gov (Steve Hunter)
Subject: Transmission of Lyme Disease by intercourse?


Question:
       Since Lyme Disease is due to a spirochete and shares many symptoms
similar to syphilis, can Lyme Disease be spread to a spouse by intercourse?
--
Ed: The conventional wisdom on this issue states that LD cannot be transmitted
sexually by humans.  There appears to be little or no controversy on this
issue.  If any reader is aware of evidence contradicting this wisdom, please
send it in.


=====*=====

In Lymenet vol#1 #13, Dave McArthur <dave@rincon.rand.org> asks:

>I would be grateful for any comments on my history of symptoms and on my
>plan.  Thanks in advance for your time and consideration.          
(long question omitted due to space constraints... please refer to issue 13).


Response by: jod@equator.com (John Setel O'Donnell)
Your symptom history sounds precisely like Lyme.  The optic neuritis you
mention has been shown to be caused by Bb in a number of cases.  Lyme has
protean manifestations; the absence of some particular manifestations does
not mean that the disease is absent.  Regarding the optic neuritis, check
out the following:


Aaberg, TM "The expanding Opthalmologic Spectrum of Lyme Disease",
Am. Jnl. Opth., Jan 1989:107:77-80


Baum, j "Bilateral Keratitis as a Manifestation of Lyme Disease", Am Jnl
Opth., Jan 88:105:75-77


Kornmehl, Lesser, etal "Bilateral Keratitis in Lyme Disease", Opthalmology,
Aug 1989:96, #8:1194-1197


Lesser, Kornmehl, et al., "Neuro-Opthalmologic Manifestations of Lyme
Disease", Opthalmology, June 1990:96,6:699-706


Schechter, "Lyme Disease with Optic Neuropathy", Am. Jnl. Medicine, July
1986, 81:143.


Smith, Parsons, "The Prevalence of Lyme Disease in a Nonendemic Area",
J. Clin. NeuroOpthalmology, 1989:9(3):145-155


Steere et al, "Unilateral Blindness Caused by Infection of the Lyme Disease

Spirochete Bb", Annals of Internal Medicine 1985;103:382-384
Winward, Smith, et al, "Ocular Lyme Borreliosis", Am J Opth., Dec 1989:108:
651-657


If you want more testing, I would recommend that you try the two new tests
which will give you more info about whether you continue to have the illness,
the Gundersen and LUAT tests.  Note, also, that you were probably tested for
intrathecal antibodies, not antigen.  Your CSF should have been PCR tested
for the test to have any validity.


One is the Gundersen test, developed at the Gundersen foundation in Wisconsin.  
It's a serological assay for anti-borrelial antibodies with high specificity
(no cross-reactivity with e.g. syphilis, rf, etc.) and a reportedly higher
sensitivity than other tests (94% during late Lyme disease according to an
article in Journal of Infectious Diseases, 1993: 167:158-164).  Your doctor
can order it through one of two labs; in Wisconsin, Iowa, Minnesota, Illinois,
and Michigan 800-526-6445, elsewhere 800-522-5070.


The other is the Immugenex urine antigen test.  This is a direct test for
excreted spirochetal antigen.  Experience is mixed on this one; the clinicians
using it recommend taking samples 3 mornings in a row, and possibly taking
antibiotics for 7 days before the test to dislodge bugs and increase
sensitivity of the test (the Gundersen test, by contrast, requires you to be
off all antibiotics for 10 days before taking the blood sample).  Immugenex
can be reached at 415-424-1191.


Regarding hopelessness about treating late Lyme.  _Late Stage Lyme Disease
Is Manageable_.  It may not be _curable_, but it can be managed so as to
prevent the appearance or exacerbation of symptoms.


Antibiotics have an enormous role to play in contributing to the health of
folks with late Lyme.  Antibiotics can greatly lower the numbers and activity
of the bugs in your body, even if they can't cure you.  For many people with
late-stage Lyme, the difference between being on antibiotics and not being
on antibiotics is the difference between being functional (near-normal) and
disabled.  This is true in my own case.


There are many difficulties in selecting an appropriate antibiotic regimen
for Lyme disease.  The bug hides in tissues, where deep penetration is
necessary; high doses of penetrating antibiotics are necessary.  It may be
necessary to treat with combinations of antibiotics because of resistance.  
All these things are quite commonly understood and accepted in e.g.
tuberculosis, which shares many characteristics with Lyme (generation time,
intracellularity, etc.); TB is treated for at least a year with a combination
of 3 powerful antibiotics.  Yet many clinicians persist in the folly of
believing they're curing Lyme infection with 14 or 28 days of lower doses of
single drugs, then attributing ongoing symptoms to "post-infectious"
autoimmune disorders.


However, with careful work with your doctor you can find the right regimen
which over a period of some months will bring you to a substantially improved
health plateau.  I'm not saying normal; long-term Lyme can cause irreversible
brain, eye, nerve, ear, spine, etc. damage, which will not heal beyond a
certain point even after you are on treatment. But much healthier.


Many of the difficulties with Lyme are physician ignorance.  There's a
paradoxical response to antibiotic therapy in Lyme, in common with the
reaction in syphilis where it was first described as the Jarisch-Herxheimer
reaction.  Shortly after initiating antibiotic therapy, symptoms get much
worse.  Fever, hives, worsening of whatever symptoms were initially present
can be included.  _This is due to the dead spirochetes being flushed out of
their hiding places, releasing endotoxins and stimulating a heightened immune
response_.  Frequently it's interpreted as candidiasis (without attempts to
verify this) or antibiotic allergic response, and treatment is terminated.  
If treatment is continued, with supportive measures as needed (NSAIDs,
perhaps even steroids for a brief period), the flare subsides (this can take
a week to 10 days) and eventually a new level of health is reached; if not,
another antibiotic should be tried. _The flare indicates that viable
spirochetes are present at the time treatment is started_.


If you have Lyme, you want a Lyme diagnosis, because Lyme is TREATABLE.  
Treating Lyme with appropriate antibiotics prevents progression of the
disease to later stages and further damage.  It also improves the health of
the patient, even if it does not result in microbiological "cure" or a state
which can be maintained without treatment.



IV. ***** PARTIAL BIBLIOGRAPHY FOR FURTHER READING *****

One of the best compilations of information available is _Lyme Disease 1991_.
This volume offers various perspectives collected from many newsletters
and other sources.  The 270 page publication is suitable for complete
reading or for use as a handbook.  The author updates the information
periodically.  To receive a copy, send a check for $11.95 to:
Lyme Disease Education Project, Inc., c/o Lora Mermin, 321 Palomino Lane,
#2-S, Madison, WI 53705.


"Lyme Disease 1991: Patient/Physician Perspectives from the U.S. and Canada
(1992)"; Lora Mermin, editor.
--
This next reference was recommended by Dr. Andy Woodward from the UK.  It is
short review of LD in Europe (specifically the UK) with emphasis on the means
of transmission.  


Doberski, Julian, Ticks, Lyme Disease and Biological Field Work, Biologist
(1992)39(4):159-60.
--
Any investigation of the effects of LD on the fetus should begin with a
review of the following paper.  Although it is a bit dated, it provides a
good review of the major issues involved.


MacDonald AB. Gestational Lyme borreliosis: implications for the fetus.
Rheumatic Disease Clinics of North America 1989;15:657-677.



V. ***** 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.



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

SUBSCRIPTIONS:
Anyone with an Internet address may subscribe.
Send a memo to    listserv@Lehigh.EDU
in the body, type:
subscribe LymeNet-L <Your Real Name>


FAX subscriptions are also available.  Send a single page FAX to 215-974-6410
for further information.


DELETIONS:
Send a memo to    listserv@Lehigh.EDU
in the body, type:
unsubscribe LymeNet-L


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
commentaries.


BACK ISSUES:
Send a memo to    listserv@Lehigh.EDU
in the body, type:
get LymeNet-L/Newsletters x-yy              (where x=vol # and yy=issue #)


example:  get LymeNet-L/Newsletters 1-01    (will get vol#1, issue#01)

-----------------------------------------------------------------------------
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)
-----------------------------------------------------------------------------
WHEN COMMENTS ARE PRESENTED WITH AN ATTRIBUTION, THEY DO NOT NECESSARILY
REPRESENT THE OPINIONS/ANALYSES OF THE EDITOR.
-----------------------------------------------------------------------------
THIS NEWSLETTER MAY BE REPRODUCED AND/OR POSTED ON BULLETIN BOARDS FREELY
AS LONG AS IT IS NOT MODIFIED OR ABRIDGED IN ANY WAY.
-----------------------------------------------------------------------------

SEND ALL BUG REPORTS TO mcg2@Lehigh.EDU.
-----------------------------------------------------------------------------


Home | Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet


© 1994-1999 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to the Terms of Use.