LymeNet Newsletter Volume 7 Issue 05

Volume: 7
Issue: 05
Date: 21-May-99

Table of Contents:

I. LYMENET: New Web Page Helps LD Patients Express Opinions to Legislators II. ESSAY: Lyme Disease: AromaTick Miracle III. GENETICS: Genetic diversity of ospC in a local population of Borrelia burgdorferi sensu stricto. IV. CLIN EXP IMMUNOL: Asymptomatic Borrelia-seropositive individuals display the same incidence of Borrelia-specific interferon-gamma (IFN-gamma)-secreting cells in blood as patients with clinical Borrelia infection. V. ABOUT THE LYMENET NEWSLETTER

Newsletter:

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* The National Lyme Disease Network *
* http://www.LymeNet.org/ *
* LymeNet Newsletter *
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Volume 7 / Number 05 / 21-MAY-1999
INDEX

I. LYMENET: New Web Page Helps LD Patients Express Opinions to
Legislators
II. ESSAY: Lyme Disease: AromaTick Miracle
III. GENETICS: Genetic diversity of ospC in a local population of
Borrelia burgdorferi sensu stricto.
IV. CLIN EXP IMMUNOL: Asymptomatic Borrelia-seropositive individuals
display the same incidence of Borrelia-specific interferon-gamma
(IFN-gamma)-secreting cells in blood as patients with clinical
Borrelia infection.
V. ABOUT THE LYMENET NEWSLETTER

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I. LYMENET: New Web Page Helps LD Patients Express Opinions to
Legislators
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Sender: Bruce Fletcher <[email protected]>
Date: May 10, 1999

A new web page service called Lyme Political Action Connecticut was
launched today, geared at focussing the electorate on pro-patient Lyme
Disease legislation. In it's first day of operation, it helped
residents send dozens of e-mail messages to key Legislators about the
pending Lyme Bill.

The site was created by Darien resident Bruce Fletcher whose wife
suffers from Lyme. Mr. Fletcher is not unschooled in the way of
politics, as he has served as the Chairman of the town's Democratic
Town Committee and on the Representative Town Meeting. "My goal in
creating this page was to create a place that provides simple
step-by-step instructions for people who want to express an opinion to
our Legislators about the need for pro-patient Lyme Disease laws.
Many people are not familiar with the political process, but with 30
seconds work this web site helps people to send a personalized note to
the 20 top decision makers on the Lyme bill now pending in Hartford."
The e-mailed messages are directed at the heads of the Public Health
and Real Estate and Insurance Committees, as well as the House and
Senate leadership. Phone and FAX numbers are also provided, and
people have already started calling Hartford. "I realized as I called
and e-mailed legislators that by myself I would never have the clout to
get anything done," remarked Mr. Fletcher. "Now thousands of residents
will be involved in pushing for meaningful legislation."

According to official records, Lyme disease has affected more than
10,000 Connecticut residents over the past 5 years, but many experts
believe this is vastly understated by a factor of 5-10 times. Lyme
remains the 2nd fastest growing infectious disease in the US after
AIDS, and Connecticut suffers from the highest infection rate.
Treatment for advanced cases of the disease involves expensive IV
antibiotic therapy, but insurance companies have set arbitrary limits
on the number of weeks permitted. Many new studies and physician
experiences demonstrate that months of treatment are often needed.
The medication costs of $200 to $300 per day quickly sap a family's
financial resources, and leave many patients without treatment.

Lyme Bill #5694 currently sits in Hartford, but includes language that
mandates a second opinion before an insurance company must provide
coverage. The bill previously required only the opinion of patients'
doctors, but the Insurance and Real Estate Committee changed the
wording after intense insurance company lobbying.

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II. ESSAY: Lyme Disease: AromaTick Miracle
--------------------------------------------
Sender: Donna Woldin <[email protected]>

Right in front of the World Trade Center, right in front of all the
scurrying Wall Streeters, I broke down and cried. Lyme disease!
Why me? Why now? I'd just come from a bookstore where I had read
everything I could about this illness after having been diagnosed
earlier that day. The myriad of symptoms detailed in the books finally
explained what I had been going through for the previous five years.
What I read scared me to my core.

A moment later, I felt a wash of extraordinary peace and a charge of
electricity course through me. I knew in that instant that I had
finally gotten the message I had been avoiding all my life. I knew,
truly knew, that this "dis-ease" was a gift from the universe and that
I would become healthier as a result of this challenge.

Prior to contracting Lyme disease, I had been an active woman living
in New York City. I went everywhere on bicycle (I've even been known
to bike in high heels to a party), windsurfed, studied all types of
dance including Flamenco, and had worked as a restaurateur for most
of my life.

All this changed over the course of a few short years. I needed a cane
as my joints and muscles were riddled with pain. I developed constant
respiratory infections. My breathing capacity decreased to 30%. A heart
murmur appeared. I lost control of my bladder (charming when you are
talking to a client). Serious depression became a concern. I had no
energy at all. More unusual, I had extremely violent images. I lost
all short-term memory, a nightmare as I had recently returned to
school. I ceased all aspects of my social life. Let's not even talk
about the loss of my libido. I was convinced I was going to die
shortly.

Within five years I saw five different doctors . None was able to help
me, until I was finally diagnosed by Dr. Stephen Bernstein, an
internist who specialized in rheumatoid diseases. He listened: a very
rare quality today. After our first consultation I asked him "What is
wrong with me?" His response was that I either had a thyroid problem
or Lyme disease.

I knew immediately the latter was my challenge. I remembered the
vacation to Fire Island when I was bitten by a deer tick. I had had
my blood tested then: negative. I requested that doctor to give me
antibiotics anyway. He refused. He told me not to worry. Five years
later, I found myself worrying a lot.

Today, after all those years of suffering, I am so healthy and feel so
wonderful that I felt I should share my journey. With the help of many
wonderful people, I was able to cure myself of all the horrific
symptoms coursing through my body and spirit.

Aromatherapy had already been part of my life for several years. I had
a side business of creating customized aromatherapy blends for
individual clients. Now, I was my most important client.

When one is very ill, one becomes isolated from others. It's as though
there is a thin veil separating you from real and vital life. You can
see the world, feel it, hear it, but there is always something
preventing you from embracing it. I spent nine months working solely on
regaining my health. It was my full-time job. I imagined I was staying
at a Swiss sanitarium in the Alps and began my work. By going deep
into the illness, I came out the other side a more compassionate person
toward other people-and myself.

What did I do? Well, I did take antibiotics for four weeks after first
preparing my body for the aggressive attack with several naturally
based preparations. I eliminated coffee, alcohol, white bread, and
sugar. I took herbs and vitamins, saw a kinesiologist, massage
therapist, nutritionist, and a psychologist.

I began to swim every day, the only exercise I could do without
aggravating my arthritic joints. This was followed by a steam bath
where I inhaled my aromatherapy blends. Before getting dressed, I
massaged blends into my body and then went home for a nap.

I took an aromatherapy bath at least once a day. I then massaged the
same oils on damp skin, put on my sweats, crawled into bed and was
asleep by 5:00 P.M. every day.

I needed analgesics and anti-inflammatory properties for my arthritic
joints, antiviral properties to fight the infection coursing through
my body, mental stimulants for my loss of short-term memory, mucolytic
oils to calm and heal my respiratory system, and anti-depressants for
my deep depression caused by the attack to my nervous system.

I continued to see my physician weekly, who having been trained
allopathically, would recommend various prescriptions for my symptoms.
When he prescribed antidepressants, I (instead) created blends that
made me happy. When he recommended anti-inflammatory medication I
(instead) massaged myself with my blended oils. When he prescribed
inhalants, I (instead) inhaled the essences from my little bottles
throughout the day. Dr. Bernstein seemed impressed by the positive
impact aromatherapy was having on me.

It's said that Lyme disease never leaves your body and that one can get
recurring problems. I've met many people with Lyme disease, some who
have been taking antibiotics for years and others so debilitated they
are in wheelchairs. While I honor that we are all uniquely different,
I am convinced that we have extraordinary power within us to heal
ourselves. By tending to and listening to our inner voice, we become
in tune with the nature in us all. Above all, listen to your body.
Trust what it has to say to you and know that you don't have to be
a victim to "dis-ease."

Reprinted with permission from THE AROMATIC THYMES.
This is an edited version of the article printed in Early Fall '98.

=====*=====

III. GENETICS: Genetic diversity of ospC in a local population of
Borrelia burgdorferi sensu stricto.
------------------------------------------------------------------
AUTHORS: Wang IN, Dykhuizen DE, Qiu W, Dunn JJ, Bosler EM, Luft BJ
ORGANIZATION: Department of Ecology and Evolution, State University
of New York, Stony Brook, New York 11794-5245, USA.
REFERENCE: Genetics 1999 Jan;151(1):15-30

The outer surface protein, OspC, is highly variable in Borrelia
burgdorferi sensu stricto, the agent of Lyme disease. We have shown
that even within a single population OspC is highly variable. The
variation of ospA and ospC in the 40 infected deer ticks collected
from a single site on Shelter Island, New York, was determined using
PCR-SSCP. There is very strong apparent linkage disequilibrium between
ospA and ospC alleles, even though they are located on separate
plasmids. Thirteen discernible SSCP mobility classes for ospC were
identified and the DNA sequence for each was determined. These
sequences, combined with 40 GenBank sequences, allow us to define
19 major ospC groups. Sequences within a major ospC group are, on
average, <1% different from each other, while sequences between major
ospC groups are, on average, approximately 20% different. The tick
sample contains 11 major ospC groups, GenBank contains 16 groups,
with 8 groups found in both samples. Thus, the ospC variation within
a local population is almost as great as the variation of a
similar-sized sample of the entire species. The Ewens-Watterson-Slatkin
test of allele frequency showed significant deviation from the neutral
expectation, indicating balancing selection for these major ospC
groups. The variation represented by major ospC groups needs to be
considered if the OspC protein is to be used as a serodiagnostic
antigen or a vaccine.

=====*=====

IV. CLIN EXP IMMUNOL: Asymptomatic Borrelia-seropositive individuals
display the same incidence of Borrelia-specific interferon-gamma
(IFN-gamma)-secreting cells in blood as patients with clinical
Borrelia infection.
----------------------------------------------------------------------
AUTHORS: Ekerfelt C, Forsberg P, Svenvik M, Roberg M, Bergstrom S
Ernerudh J
ORGANIZATION: Department of Neuroscience and Locomotion, Faculty of
Health Sciences, University Hospital, Linkoping, Sweden.
REFERENCE: Clin Exp Immunol 1999 Mar;115(3):498-502
ABSTRACT:

Borrelia Lyme disease is a complex disorder that sometimes becomes
chronic. There are contradictory reports of experimental Borrelia
infections regarding which type of T cell cytokine responses, i.e.
Th1 or Th2, are needed to eradicate the Borrelia spirochaetes. In
human borreliosis a predominance of Borrelia-specific Th1-like
responses has been shown. In this study, spontaneous, as well as
Borrelia-specific, secretion of IFN-gamma (Th1) and IL-4 (Th2) in
Borrelia-seropositive healthy asymptomatic individuals (n = 17) was
investigated in peripheral blood by a sensitive ELISPOT assay, and
compared with previously reported responses in patients with clinical
Borrelia infection (n = 25). The seropositive asymptomatic individuals
displayed the same predominance of Borrelia-specific IFN-gamma-
secreting cells as the patients with clinical Borrelia infection.
Interestingly, the proportion of spontaneously IL-4-secreting cells,
reflecting the unstimulated in vivo secretion, was lower in the
seropositive asymptomatic individuals compared with patients with
chronic Borrelia infections (n = 13, P = 0.02), whereas no such
difference was found compared with subacute Borrelia infections
(n = 12). These findings indicate that IFN-gamma secretion alone
is not sufficient to eliminate Borrelia spirochaetes in humans,
although IFN-gamma may still have a beneficial role in borreliosis
acting in concert with other mechanisms.

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V. ABOUT THE LYMENET NEWSLETTER
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John Setel O'Donnell <[email protected]>
Frank Demarest <[email protected]>
Advisors: Carol-Jane Stolow, Director <[email protected]>
William S. Stolow, President <[email protected]>
The Lyme Disease Network of New Jersey
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