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Volume: 1
Issue: 13
Date: 15-Jun-93

Table of Contents:

NEWS: CDC Reporting criteria
SPECIAL SECTION: LDF Conference Summary - part 2
QUESTION: Optic Neuritis and LD


*                  Lyme Disease Electronic Mail Network                     *
*                          LymeNet Newsletter                               *
                     Volume 1 - Number 13 - 6/15/93

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 *****

We begin this issue with an advisory.  As many of you may know, the CDC is
planning to restrict its already restrictive reporting definition.  The CDC
apparently views this as a necessary measure to prevent "overdiagnosis,"
while others view this as a blatant attempt to distort statistics.  Whatever
the outcome, we will bring you the results of this action as soon as they
become available.  Dave Dalby explains below.

In addition, Dr. Lloyd Miller presents part two of his notes from the LDF
Conference in Atlantic City last month.  We also have an update from
Connaught Labs on the progress of their experimental LD vaccine.

Finally, we have a story that everyone must read in our Questions and Answers
section.  Dave's story is, unfortunately, very common today.  Please read it.


FACTIOD: According to the Hartford Courant (6/3/93), 1.3% of the population
of Lyme, CT were given a diagnosis of LD (using CDC criteria) in 1992 alone.


From: "Dave W. Dalby" <[email protected]com>                          
Subject: News Update: CDC Reporting criteria.                    
Did you know that [on June 17], a CDC panel will be voting on a proposed
change in the Lyme disease reporting criteria/definition?  A meeting was
held in Atlanta this March in which a proposal was presented that would
restrict the rash to that of a bulls-eye only.  Also mentioned was that at
least one late manifestation and laboratory evidence of infection be present.

At the same time, a panel of physicians advised the CDC to adopt a broader
definition, opposing the suggested more stringent requirements.  I would
encourage those concerned to express their opinion on this issue as soon as
possible.  Some groups have been targeting their state and federal
representatives and state health commissioners and epidemiologist as well as
to           William L. Roper, MD, Director
            Centers for Disease Control
            600 Clifton Road NE, Building 1
            Atlanta, GA, 30333.  

Also mentioned was Ruth Berkelman, MD, Deputy Director, NCID, at the CDC.  


Sender: "Lloyd E. Miller,DVM" <[email protected]>
Subject: 6th Annual Lyme disease Conference notes


Every effort has been made to be accurate as possible - corrections,        
additions, clarifications and comments on anything in the notes are welcome.

Items bracketed by >*< are my own comments - LEM  >*<

The title of the paper is given first followed by the primary authors name
followed by excerpts from the authors abstract and notes taken during his/her

Lloyd E. Miller,DVM  May 1993                                                

Psychiatric aspects of Lyme disease in adults & children:  New research
Brian Fallon, MD, MPH, Med                                            

1. Lyme disease patients feel like their body is committing suicide on them
  without permission - they feel their personality and spirit are destroyed.
2. Intense sensitivity to light and sound are common.
3. Lyme disease can cause personality disorder.                      
4. 90% of chronic Lyme disease patients have encephalopathy . Symptoms
  include memory loss, depression, sleep disturbance, irritability,
  difficulty finding words.                                              
5. Lyme disease patients may show subtle impairment in psychological tests.

>*<  The reader is referred to the following reference for an excellent
review of the topic Fallon BA, Nields JA et al: The neuropsychiatric
manifestations of Lyme borreliosis. Psychiatric Quarterly 1992; 63(1):
95-117. >*<                          

Lyme disease in the Midwest                                            
Ed Masters,  MD          

  Dr. Masters presented good evidence that Lyme disease occurs in Missouri.
He stated that the Dr. Oliver's tick research has shown that the right ticks
for transmission do exist in the South.  The spirochete he is finding stains
somewhat differently and is more difficult to culture.  He feels that the
culture requirements may be different than reference strains.  According to
the CDC, they will not declare that these cases in Missouri are Lyme disease
until the organism can be cultured and characterized.  Which reinforces Dr.
Masters' statement that "Lyme disease is a clinical diagnosis - until you
make it"

Persistent infection despite extensive treatment                              
Kenneth B. Liegner                                                            

 Dr. Liegner described  a case which demonstrated the difficulties that
doctors and patients are having in getting treatment for Lyme disease when
dealing with a third party who is determining treatment or in the case of
insurance companies what they are willing to pay for.
Several importance points were made:                                            
  A. In some cases nurses and others who are less qualified than the
     physician are determining patient care.                                          
  B. Third parties are determining treatment (or denying treatment) in spite
     of the fact that they have no personal contact with the patients.            
  C. Third parties are determining treatment in spite of the fact that they
     have no personal responsibility for the patients.                        
  D. In order for a physician to advocate for a patient he feels is being
     mistreated by the system, the physician must spent an extraordinary
     amount of time and effort that he could be spending caring for other

  E. It is suggested that major injustices are being perpetrated against Lyme
     disease patients.

Important questions arise:                                              
  A. Is the third party practicing medicine without establishing a
     doctor-patient relationship?                                            
  B. Is the third party then rendering their own diagnosis?
  C. In the event of an adverse outcome resulting from this relationship and
     misdiagnosis (by the third party) is the third party ultimately liable

>*< Dr. Liegner in his presentation appeared to be more convinced than ever
that chronic Lyme disease is the result of persistent infection.  In fact, he
said quite clearly that there should be no controversy  - that indisputable
evidence of chronic persistent infection has been presented and published in
the peer reviewed literature.  His talk underlined the fact that the
presentation of Lyme disease is extremely variable.  He showed that patient
treatment is being determined by persons who have incomplete information
about a patient, who lack important knowledge about the disease and who can
decide a patients fate based on personal belief rather than medical evidence
and can do so with impunity.  The particular case presented made very clear
that the diagnosis of Lyme disease, especially in the chronic recurrent
case, requires in many cases the use of investigational techniques.  These
techniques are not readily available to the average patient. I believe that
most physicians are unaware of the various investigational tests that can be

used to help clinch the diagnosis.  Even if he is aware his access to them is
very limited.  It was clear from this presentation, and other presentations
at the conference, that before one can say a patient does not have Lyme
disease when the clinical evidence points to the disease, and no other
diagnosis can be offered, requires the use of several of the various tests
which in many cases, unfortunately, are only available on an
investigational basis.  It may be that until the "gold standard" test is
developed that when laboratory confirmation is required either by the
attending physician or a third party that a well orchestrated battery of
tests (culture, biopsy, PCR, ELISA, neutralizing antibody, western blot,
antigen, immune complex and so forth) will be necessary in order to
establish the presence of the elusive Borrelia burgdorferi and it's by-
products. >*<                                        

B cell mitogen activity of Borrelia burgdorferi surface components      
William M. Whitmire                                                          

 Results of studies show that like OspA and OspB OspC is also mitogenic.  
Mitogenic proteins may contribute to the pathogenesis of Lyme disease.
Concern was raised about the possibility that vaccines containing these
proteins would produce adverse or undesirable immune system effects.              
Sub-unit vaccine development - new discoveries                                
Charles S. Pavia, PhD                                                    

 The impact of the adjuvants QS-21 and aluminum hydroxide on the    
immunogenicity of recombinant outer surface proteins A and B of Borrelia
were investigated.      
 Antisera to OspB formulated with either adjuvant had low or no
borreliacidal activity against four strains of Bb.  OspA adjuvanted with
QS-21 was highly borreliacidal.  OspA was superior to OspB and QS-21 was
superior to aluminum hydroxide at eliciting functional antibody response.
The vaccine containing OspA and OspB formulated with QS-21 was protective
in mice against infection with 10 infectious spirochetes of strains B31 and
CA-2-87.  This formulation may be a promising vaccine candidate, and QS-21
may serve as a critical component in the subunit vaccine against Lyme
>*<> See previous comment regarding Osp proteins and concern over adverse    
Epizootiology of Lyme Borreliosis in the Southeast

James H. Oliver, Phd
 Dr. Oliver, as he stated it, was told "as if they were law" certain facts
about Lyme disease in the South.  He turned these "laws" around and made
them into hypotheses and then set about to prove them.                            
 1. Ixodes dammini and Ixodes scapularis are not the same.  DISPROVEN
 2. Ix. scapularis prefer lizards - Ix. dammini prefer mice.  When given a
    choice Ix. scapularis preferred mice> lizard> chicken.  When given a
    choice Ix. scapularis nymphs slightly favored mice.  DISPROVEN                        
 3. Lizards are not competent reservoirs -- "jury still out" -- research in
 4. There is no evidence of Bb in non-human animals in the Southeast.
    Bb has been isolated from cotton mouse and cotton rat in both Georgia
    and Florida. DISPROVEN  
 5. There is no proven case of human Lyme disease in the south. DISPROVEN

Commenting about Amblyomma americanum (the lone star tick) he stated that Bb
in molted nymphs disappear or become less pathogenic as time from molt
progresses.  He doubts that there is a difference in the rates of feeding on
humans of Ix. dammini and Ix. scapularis - which he refers to as the
Northern and Southern populations of Ix. scapularis respectively.
>*<> It would be very nice if there were more open-minded true scientists
like Dr. Oliver >*<                                                                


TILE: First Lyme Disease Vaccine in Phase I Clinical Trials
DATE: 5/21/93
SOURCE: Biotechoonogy News, 13 (13), p3

Connaught Labs has two different versions of a Lyme disease vaccine which
appear to be safe and elicit antibodies.  One version is based on en E.
coli produced recombinant antigen from the outer surface protein of
Borrelia burgdorferi.  The same antigen is combined with BCG to make other
versions of the vaccine.  Phase I trials were conducted in 36 healthy
patients at the University of New Mexico School of Medicine.  Connaught will
extend the trial this summer to characterize the immune response seen in
patients, and hopes to market the product within 4 years.  Lyme disease is
second only to AIDS as the fastest growing infectious disease in the US.  
About 50,000 cases have been reported since 1982, but the Lyme Disease
Foundation (Tolland, CT) estimates that there are 500,000 cases of infection
in the US.

For more information, contact:   Linda Mayer
                                Connaught Laboratories, Inc.
                                Rt 611, P.O. Box 187
                                Swiftwater, PA 18370
                                VOICE: 717-839-4340
                                FAX: 717-839-7235


Sender: Dave McArthur <[email protected]>
Subject: contribution to the Lymenet Newsletter

In March of 1987 I went for a hike, wearing shorts and a tee-shirt,          
climbing to the top of McPhearson Peak in Santa Barbara country
(California).  The trail was tick infested and several times during the
hike I had to stop and remove ticks from my clothes and body.  About two
weeks later I noticed a circular red rash on my right thigh, approximately
6 inches in diameter.  I received no medical attention for the rash and it
subsided in a few weeks.                                                                                                                

In October 1988 I began experiencing a mild sensory numbness in both legs.
It was most pronounced in my feet but extended into both thighs.  After
approximately a week it lessened, but has never completely subsided to this
day.  There has never been any motor impairment.  I consulted both an
internist and neurologist at Kaiser Permanente, but no definitive diagnosis
was made.  The neurologist conjectured that it might be related to a back
problem -- I mildly herniated my fifth lumbar disk in May 1990.
In July 1991 I began to lose vision in my left eye.  It rapidly degraded to
shadow vision within a week.  An ophthalmologist at Kaiser diagnosed it as
optic neuritis.  Multiple sclerosis was considered a possible cause.  After
a subsequent bout of optic neuritis (also in the left eye) in December 1991
I had an MRI and lumbar puncture to test for MS.  The MRI indicated    
possible MS; the lumbar puncture was negative for MS.                  

The neurologist refused my request to test my CSF for Lyme disease.  He  
discounted Lyme disease as a cause for my symptoms, arguing both that Lyme
disease is almost non-existent in Southern California, and that optic
neuritis is not a documented neurological manifestation of Lyme disease.  

In August of 1992 I had two independent blood tests for Lyme disease.      
In the first, the Western Blot test was negative, but the IgG by IFA
was positive with a titer of 1:512.  The second was positive by the        
EIA Assay for IgG antibody.  I began taking doxycycline (100mg 3 times  
daily) in August 1992, and continued for one month.  This treatment
was not prescribed by Kaiser, but by one of the independent
physicians.  Finally, in April 1993, at Kaiser, I underwent a second      
lumbar puncture, this time testing for Lyme disease.  It was negative.    

Since my second bout of optic neuritis, in December 1991, I have had no    
additional symptoms that are associated with either MS or Lyme disease
-- no chronic fatigue, cardiac involvement, arthritis, or behavior
changes.  I remain physically as active as I have always been.

My plan at this time (much to the relief of my doctors at Kaiser) is to  
forget about Lyme disease as a possible explanation for my symptoms, both
on the grounds that it is unlikely (given my history and mixed test    
results) and because late-stage disseminated Lyme disease (which is what I
must have if I have Lyme disease at all) is very unlikely to respond to
treatments.  I will continue to monitor the Lyme disease and MS literature,
however.  And, should I get the opportunity, I may consider undergoing one
of the new MS treatments that are now being piloted.                  

I would be grateful for any comments on my history of symptoms and on my
plan.  Thanks in advance for your time and consideration.          

Sender: [email protected] (Denis Knowles)
Subject: narcolepsy

Does anyone have knowledge of a narcolepsy maillist, conference, or BBD?
If so, please send info to me or directly to Marc at:
      [email protected]

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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