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Volume: 1
Issue: 22
Date: 20-Sep-93

Table of Contents:

ANNOUNCEMENT: Iowa State University Seeking Ticks
ANNOUNCEMENT: Missouri and Southern Illinois Ticks Sought
ABSTRACT: (Nord Med) Message from Lyme
ABSTRACT: (J Wildl Dis) Serologic Survey for Antibodies to Borrelia
          Burgdorferi in White- Tailed Deer in Georgia
QUESTION: Lyme Patient Access
NEWS ANALYSIS: MS and LD in Connecticut
ANSWER: Antibiotic Course
QUESTION: Hearing Loss and Lyme Infected Tick


*                  Lyme Disease Electronic Mail Network                     *
*                          LymeNet Newsletter                               *
                     Volume 1 - Number 22 - 9/20/93

I.   Introduction
II.  Announcements
III. News from the Wires
IV.  Questions 'n' Answers
V.   Jargon Index
VI.  How to Subscribe, Contribute and Get Back Issues

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

This issue of the newsletter is comprised entirely of reader input.  I would
like to thank the contributors for sending in such excellent material and
encourage everyone to send in stories that would be of interest to our

We begin with more tick requests.  Mid-western researchers are looking for
ticks and you can help.  In the next section, Dr. Lloyd Miller uncovers a
few gems in his database searches.  He presents several very important pieces
of information that everyone should read carefully.

Tom Hoffman explains how he believes the Lyme Disease Electronic Mail Network
could be used for research purposes.

We continue with the preliminary results of Contributing Editor Frank
Demarest's recent investigation into a peculiar increase in MS cases in one
Connecticut town.  Frank's interest began when he discovered a report on the
increase in a local paper.  You may be surprised to see the data he

We round up this issue with our Questions 'n' Answers.



From: John K. VanDyk ([email protected])
     Lyme Disease Project
     Iowa State University
Subject: Wanted, dead or alive: Iowa ticks for research
  Researchers at Iowa State University need your help.  They have received
deer ticks from 18 of 99 counties, mostly in eastern and northeastern Iowa.
But more specimens are needed.
  Place Iowa ticks in a plastic ziploc bag with a few blades of grass to
prevent dehydration.  Then send the ticks, along with your name, address,
and county where the tick was collected, to:                        
Lyme Disease Project
436 Science II    
Iowa State University
Ames, IA 50011                      

All those submitting ticks will receive a postcard identifying the
tick.  Additionally, ticks received live will be tested for spirochetes by
IFA and results returned to the sender.

From: John K. VanDyk ([email protected])
     Lyme Disease Project
     Iowa State University
Subject: Hunters wanted to help Lyme research        
  Many hunter-shot deer have engorged deer ticks around the ears and neck.
These ticks may drop off and be easily collected when the body temperature
of the deer drops.  Ticks may also be removed from the carcass by using a
scalpel or sharp knife to cut a small chunk of skin, including the tick's
mouthparts, away from the deer.  Ticks will remove their mouthparts from the
skin overnight.              
  Researchers at Iowa State University want these engorged ticks!  Place
them in a ziploc bag together with a few blades of grass to prevent
dehydration.  Put the bag in a container so the ticks will not be crushed in
transport.  Then send the ticks, along with your name, address, and county
where the ticks were collected, to:    

Lyme Disease Project
436 Science II
Iowa State University        
Ames, IA 50011
Especially sought are engorged ticks from deer in Lyme-endemic areas, such
as Wisconsin.


From: The Lyme Disease Update (September 1993 issue)
Subject: LIVE Missouri and Southern Illinois Ticks Needed for Lyme Research

You can help research move forward.  Collect and mail ticks (alive) to:
Dr. Ed Masters, 60 Doctors' Park, Cape Girardeau, MO 63701.  Please include
your name and phone number and the county and state where the tick was

Instructions for mailing ticks:
1. Put the tick in a ziploc plastic bag.
2. Place a single blade of grass in the bag with the tick.
3. Put the plastic bag with the tick in another bag (double bag) for safety.
4. Put the ziploc bag in a non-crushable container (i.e. small box) for
5. Mail by regular mail to the above address.

[From the Lyme Disease Update, nationwide monthly newsletter, September 1993,
call or fax to 1-812-471-1990 for more information]


Sender: "Lloyd E. Miller,DVM" <[email protected]>
Subject: Items of interest

 I found the following reference and abstract in a recent Medline search.
Everyone in the medical profession (physicians, physician assistants, nurses,
researchers, insurance representatives, etc) should read, memorize and have
the abstract framed on their wall!

Wahlberg P
[Message from Lyme]
Budskapet fr~an Lyme.
Nord Med 1993;108(5):157-8  (Published in Swedish)

The background to the discovery of Lyme disease teaches a salutary lesson.
The symptoms and signs of this disease had been observed by doctors for a
century, particularly in the Scandinavian countries, without anybody being
able to draw the right conclusions.  The first patients were identified in
the USA by their relatives or by themselves.  Recognition of their plight
by the medical profession was chiefly due to the patients' tenacity.  We
must remember to pay attention to what patients tell us; they may often be
right, even when they seem to be wrong.  Where fact and theory are
incompatible, it is theory, not fact, that needs to be amended.  In all
likelihood, we all from time to time observe disorders in our patients that
are inconsistent with established scientific models, but which we
nevertheless attempt to squeeze into these models.  Such an approach is not
uncommon in the history of medicine.  The message from Lyme calls for
humility and reflection.

Institutional address:
    Asvagen Mariehamn

 In LymeNet Newsletter v1 #13, I reported the following from the meeting at
Atlantic City: Dr. Oliver, as he stated it, was told "as if they were law"
certain facts about Lyme disease in the South.  One of which was that there is
no evidence of Bb in non-human animals in the Southeast.  He showed this to be
wrong.  The following reference helps to show how wrong.

Mahnke GL, Stallknecht DE, Greene CE, Nettles VF, Marks MA
Serologic survey for antibodies to Borrelia burgdorferi in white-
tailed deer in Georgia, J Wildl Dis 1993 Apr;29(2):230-6

A serologic survey for antibodies to Borrelia burgdorferi utilizing an
enzyme-linked immunosorbent assay (ELISA) was conducted on white-tailed
deer (Odocoileus virginianus) serum samples collected in Georgia (USA)
from 1979 to 1990.  Serologic results from four regions (Barrier Islands,
Coastal Plain, Piedmont, and Mountain) and three age classes (0.5, 1.5,
and > or = 2.5 yr) were compared.  Antibody  prevalence, as determined by
positive results at a 1:64 dilution or higher, was 36% in the Barrier
Islands, 14% in the Coastal Plain, 8% in the Piedmont, and 4% in the
Mountain regions.  Statewide antibody prevalence was 19%.  Antibody titers
generally were low, and if a more conservative cutoff titer of 1:128 were
used, the statewide prevalence estimate would have been reduced to 5%.  
Antibody prevalence as determined at this higher cutoff value, however,
still remained highest in the Barrier Islands and lowest in the Mountains.
Prevalence estimates were lower in the 0.5-yr age class than in the
1.5-yr or > or = 2.5-yr age class (P < 0.05).  A more in-depth retrospective

study of the Barrier Islands region from 1971 to 1985 revealed a 50% overall
antibody prevalence; positive results were found in every year represented
except 1990.  Based on these results, we propose that B. burgdorferi has been
present in Georgia since at least 1971.

Institutional address:
    College of Veterinary Medicine
    University of Georgia
    Athens 30602.

>From NY Times Book Review of "The Forgotten Plague" by Frank Ryan - Little
>Brown & Co  : Review by Stephen S. Hall (Sunday August 1, 1993)

The following two statements are direct quotes.

1. Almost every significant advance against tuberculosis was made not by
recognized experts in the field but by scientists working in unrelated fields
who were visionary enough to see how their work could be applied against
tuberculosis.  By contrast, the people who were most resistant to new
developments were physicians, whom Domagk once derided as "TB-popes".

2. Most important, Dr. Ryan suggests that optimism can be disastrous.
In the war against clever pathogens cures are rarely complete or enduring.


 Little has change over the years!  We certainly have our share of
"Lyme-Popes."  Some are more vocal than others.  Some even write their own

 The cure for Lyme has not yet been discovered but we would be well advised
to continue to look for more and better cures as research progresses.
Especially given the ability of Bb to evade and change.


Sender: [email protected] (Tom Hoffman)
Subject: Lyme Patient Access

Dear LymeNet Editor(s),

I applaud your newsletter and have derived much information from it.  As
a recovered (or is it recovering?) Lyme disease patient and a computer nerd,
I see the Internet as a great way to get information distributed easily to
the masses.  Of course, these masses include Lyme disease researchers
(I hope).

Anyway, the researchers may be interested in tapping the Lyme patients who
also read the newsletter.  For example, I have a what probably amounts to a
CDC definition of Lyme disease with heart involvement and positive serology.
I have been treated in two different periods and now (today anyway) feel
fairly normal.  The point is that some researcher may be interested in my or
the tens, hundreds, (thousands?) of other Lyme patients that read the
newsletter.  They may be interested in what's already documented (hospital and
doctor records, etc.) or possibly even in bodily fluids or tissues.

Researchers have for some time used on-line databases to search for
information.  Now, they can use the Internet to find patients (i.e. samples)
for their studies.  Maybe, Lyme patients can even "register" their individual
summary of disease, treatment and outcome.  The researcher could pick the
"samples" that meet the criteria they are interested in.

Just a thought... thanks,


From: Frank Demarest <[email protected]>
Subject: Interesting statistics

>Headline: Outbreak of MS cases a concern.
>Associated Press, Wallingford CT.                                        
>Reported in the Middletown (CT) Press 9/13/93.                            

[Relevant paragraphs extracted]                                                            
The town health department released a study that shows Wallingford's rate
of MS cases is 2.5 times the Northeast regional average.  The town of 40,000
has 110 reported cases compared with the regional average of 110 per 100,000
and the national average of 60 per 100,000."
"It still doesn't mean that this is a problem," said Chad Helmick, a doctor
with the Atlanta-based Centers for Disease Control and Prevention, which
investigates MS cases.
"Joan Corcoran Fishbein, 49, was diagnosed with the disease in 1976.  She
said she thinks the cases are linked to pesticides sprayed on Dutch elm trees.


Wallingford is about 12 miles from Yale, where seronegative Lyme disease is
considered rare, and the clinical diagnosis of Lyme disease must be supported
by lab evidence.  About 1/3 of the area of Wallingford is rural and adjacent
to the rural towns of Durham and No. Branford.  The numbers for Wallingford
and the adjacent towns are:                                        
  City        Where      Disease  Number    Rate (per 100,000 population)
Lyme          East 25mi    Lyme    261      334
-- CT River --                                                      
Deep River    East 18mi    Lyme     30      693            
Killingworth  East 12mi    Lyme     18      374
Durham        East         Lyme     12      209
No. Branford  Southeast    Lyme     25      192                    
Wallingford   0            Lyme      2        5                
Wallingford   0            MS      110      275

No. Haven     South        Lyme      2        9
Hamden        Southwest    Lyme      7       13
Cheshire      West         Lyme      4       16
Meriden       North        Lyme      3        5                          
Middlefield   Northeast    Lyme      1       25                              
I find myself wondering why Wallingford has the lowest rate of Lyme disease
in the immediate area.  It will be interesting to see what the investigation
finds about MS, and if Lyme disease is found in some cases.  There are many
possibilities: Lyme underdiagnosis?  Pesticides killing ticks and causing MS?
Random occurrences?  A nearby hunting club killing deer?


Sender: [email protected] (John Setel O'Donnell)
Subject: Re: LymeNet Newsletter vol#1 #17

>Sender: [email protected] (Rich Johns)
>Subject: question

>Hello. I am new to this group. I recently contracted Lyme disease.
>I have a question regarding my antibiotic course.

>I have an Infectious Disease specialist as my doctor.  He started me on a
>21 day course of Doxycycline 100mg 3 times a day. This promptly gave me
>heartburn, which is the only way I can describe it.  It's worse though,
>because it feels like something is stuck in my esophagus

>Sometimes and I have a nearly constant discomfort in my stomach. When I
>swallow is seems to hurt deep in my throat.

>Now, none of this is too terrible and I would be willing to deal with it if
>I thought that I wasn't doing damage to myself. To ease the discomfort I
>starting taking it 2 times a day, ie., 100mg, instead of 3 times a day.
>The reason I don't feel badly about going against my doctor's advice is
>because I have heard that the course should last 4-6 weeks. Also, my
>brother-in-law, who is a family doctor, one I trust, told me that 100mg
>2 x a day is enough. However, I thought I'd get the wisdom of this newsgroup.


Your brother-in-law is correct that the proper course should be 4 to 6
weeks.  Doxycycline is not really the drug of choice at the moment; however,
it is effective _if taken in adequate dosage_.  You should be taking it
3x/day to achieve and maintain adequate bacteriostatic levels of the drug.  
Taking it in too-low dosage is likely to result in relapse after treatment,
and may assist the bug in becoming deep-seated.

You should go get more of the drug so that you can take it the appropriate
period.  Or you could switch to amoxicillin to see if you tolerate it
more easily.

In general, when any kind of adverse drug reaction occurs, you should
be consulting your physician rather than modifying the course of the drug


Sender: [email protected]
Subject: Hearing loss and lyme infected tick

My daughter who is 12 years had a unilateral sudden hearing loss of about
80 percent.  The doctors said it must have been caused by a virus and that
since it involved the inner ear, they gave her no hope of recovery from this
one-sided deafness.  I was exploring on a database of periodical citations
and came across an article dealing with hearing loss and lyme disease.  
(We do quite a bit of camping, but she has never shown any of the usual
symptoms of lyme disease, i.e., rash, flu-like symptoms, stiff neck, sore
throat, etc.)  The citation for the article is listed below.  Has anyone
else experienced any sudden hearing loss related to lyme disease?

Hanner,Per et al.  "Hearing impairment in patients with antibody production
against Borrelia Burgdorferi antigen"  The Lancet, v.1, n.8628 Jan.7, 1989,

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
Western Blot - A more precise antibody test.


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