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Publication of the California Lyme Disease Association, an affiliate of the LDA
the
NUMBER 36
Lyme Times
National Coverage of Tick-Borne Diseases
LDA News
Bestselling
Author Amy
Tan Supports
LymeAid4Kids
Fund
Children without
insurance will
benefit
Jackson, October 27, 2003––The
Lyme Disease Association (LDA), a
national non-profit organization
dedicated to Lyme disease education,
prevention, research, and patient
support, announced the creation of
LymeAid4Kids , a fund administered
through the LDA and designed to be
used by families with no insurance
who need to have their children
properly evaluated for possible Lyme
disease.
Internationally acclaimed author
Amy Tan, whose books The Joy Luck
See LymeAid4Kids on page 31
Inside...
LDA reps meet
with Health &
Human Services
page 32
SPRING 2004
ILADS Publishes
New Treatment
Guidelines
Evidence-based world-wide standards
Bethesda, Maryland - The
International Lyme and Associated
Diseases Society (ILADS) has
published new guidelines for
diagnosing and treating Lyme
disease, to help physicians combat
the fastest growing vector-borne
disease in the United States. The
guidelines are necessary to address
the high rate of treatment failures
and relapses seen using standardized
short-term treatment protocols. The
guidelines, which are evidence-based
and peer-reviewed, recommend that
the treatment be individualized based
on the clinical course of the patient.
In addition, the guidelines emphasize
that diagnosis must be made clinically, with laboratory tests playing a
supportive role. The ticks that carry
Lyme disease can also carry a
number of other serious diseases, and
the guidelines also stress the importance of diagnosing and treating any
coinfections.
ILADS criticized guidelines
calling for a standardized short-term
treatment as ineffective and premature. “Treatment response is highly
variable,” said ILADS president Dr.
Steven Phillips of Connecticut.
See Guidelines on page 35
Hundreds Attend Connecticut
Hearing
by Paula Capasso
Hartford – On Thursday, January
29, hundreds of patients, physicians,
scientists and government officials
packed into an overflowing room at
the Legislative office building in
Hartford, Connecticut, to participate
in a hearing convened by Connecticut Attorney General Richard
Blumenthal and Public Health
Commissioner Robert Galvin, MD,
in response to thousands of calls
letters and petitions voicing concerns
about the difficulties surrounding the
diagnosis, treatment and reporting of
Lyme disease.
Lyme disease was first recognized
See Hearing on page 24
the Lyme Times
NUMBER 36
SPRING 2004
the
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Lyme Times
Publication of the California Lyme Disease Association
In this issue...
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LDA News
Editorial
Letters
Heroes
Beginners’ Pages
Front Lines
Patient Story
Patient Support
More LDA News
Regional News
Deaths
Research
Conferences
Book Reviews
Survey Form
President’s Message
Membership Form
Book Shelf/Calendar
Special articles
Thyroid test relying
on TSH can be deceptive
23
Health & Human
Services meeting
32
38
California Physician
Response to TBD Questionnaire
From the Editor
Dear Readers,
I can hardly believe this issue is
about to leave my desk, having been
in the works on and off for almost
four months. You can see from the
volume that there is no dearth of
material. Indeed, the problem is too
much information, and how to sort
through it to bring you the most
important, without overwhelming
you. I think you will agree though
that the Lyme Times has brought
together an unbeatable team with
professional expertise, writing talent,
and inspiration. Their names are
listed under “Staff ”(page 3, column
1), but actually no one is paid. The
community is fortunate to have so
many people who are willing to
volunteer their time and energy to
this project time after time after time.
I want to thank them all very much.
We understand that many of our
readers are patients with limited
energy to devote to causes, even
causes that have a direct effect on
their own lives. That is why from
time to time we urge patients to do
the small tasks that only they can do,
the tasks that do not require too
much time or money or understanding of techinical information.
Without the involvement of numbers
of people we cannot move forward on
the large front. Two opportunities are
presented here: one, the survey on
page 61; and two, the ILADS
guidelines cover letter on page 36.
Both these actions have the power to
help patients nationwide. The results
of the survey will show the impact of
the CDC case definition on the
clinical diagnosis of Lyme disease.
Sharing the ILADS Guidelines with
healthcare professionals across the
country will tend to promote a more
balanced approach to the diagnosis
and treatment of tick-borne diseases.
I urge every reader to personally
attend to both these small tasks,
because only when our efforts are
added together, will we make a
difference.
Let us also welcome Amy Tan
into our community. While no one
would wish this disease on their
worst enemy, let alone a lovely
person like Ms. Tan, we appreciate
what her celebrity can bring to our
cause, and are grateful that she has
been so generous both with her time
and her pocketbook. She attended
both conferences in Philadelphia in
November and also testified at the
hearing with the California Senate
Health and Human Services Committee in March, which we will report in
our next issue. One senator termed
her “a very credible witness.” She
has also worked with LDA to set up a
special children’s fund,
LymeAid4Kids, and started it off
with a generous donation.
Our next issue will focus on
children. We hope it will be a
“keeper” and are considering
upgrading our paper for it. Till then,
be well.
The California Lyme Disease Association (CALDA) is a non-profit corporation that acts as the central voice for all tick-borne
disease issues in California and a supporting voice for national issues. Through advocacy and education of the public and
health care professionals, CALDA seeks to prevent tick-borne diseases, encourage early diagnosis, and improve the quality of
health care provided to those with tick-borne diseases.
Page 2
Spring 2004
Publication of the California Lyme Disease Association
the Lyme Times
Spring 2004
Publisher
California Lyme Disease Resource Assn.
the Lyme Times Staff
Editor: Phyllis Mervine
Contributing Reporters: Virginia Sherr,
Sandy Berenbaum, Tom Grier, Lorraine
Johnson, Jerry Simons,Harold Smith, Pat
Smith, Ellen Lubarsky, Kathy White,
Deborah S. Kliman, Linda Finn
Contributors: Paula Capasso, Mark La
Fevers, Terri Reiser, Howard Posner,
Daniel Kinderlehrer, Jon Strong, Ken
Lipman, Ellie Becker, Melissa Diamond, ,
Alfredo Flores, Sandi Lanford
The Lyme Times (Library of Congress card
no.92-595999) is published by the California
Lyme Disease Association, PO Box 1423,
Ukiah CA 95482
Membership rates 1 year
• $30 - Basic
• $50 - Supporting (and institutions)
• $100 - Sustaining
• $200 and up - Patron
• $15 - Special Needs
US funds only. Send check to CALDA, PO
Box 707, Weaverville CA 96093
Send address changes to:
Nancy Brown, CALDA, PO Box 707,
Weaverville CA 96093
or email [email protected]
Include both old and new addresses,
including zip code.
Address correspondence to:
Phyllis Mervine, Editor
the Lyme Times
PO Box 1423
Ukiah CA 95482
or email at <[email protected]>
The articles in the Lyme Times are not intended
as medical advice regarding the treatment of any
symptoms or disease. Medical advice of your
personal physician should be obtained before
pursuing any course of treatment. The Lyme
Times makes no express or implied warranties
as to the efficacy or safety of any treatment in its
articles or letters and disclaims all liability for any
use of any such treatment. Opinions expressed
in articles are those of the authors alone and are
not necessarily those of the Editor, CALDA, or
the LDA.
Republication of any portion of the Lyme Times
without written permission is prohibited. Please
contact the Editor if you wish to duplicate articles.
To submit articles, please send electronic files to
<[email protected]>. Original articles are
preferred. Published uncopyrighted articles
become the property of the California Lyme
Disease Association.
© Copyright 2004 CALDA
Number 36
Guest Editorial
Lyme Disease: What we know
and what we don’t know
Unanswered questions justify the need
for more scientific research
by Tom Grier, Contributing Reporter
At no time in the history of
medicine have we had such powerful
scientific tools at our disposal to find
medical answers to the plagues of
mankind. It is that much more of a
tragedy then that the fastest growing
vector-borne disease – Lyme
Borreliosis – which has ignited a
medical controversy that rivals
AIDS, is given inadequate funding to
truly understand its pathology.
Why is it that in the three
decades since Lyme disease was first
described that it still perplexes us
and vexes us with controversy and
puzzlement?
The heart of the controversy with
Lyme disease comes down to the
inescapable fact that victims of Lyme
disease all too often have lingering
symptoms that remain or return even
after aggressive and multiple
antibiotic treatments. They remember
wellness, but with each passing year
the fog that fills their brain, the
palpitations that shake their hearts,
and the fatigue that overwhelms their
bodies becomes the ever present
reminders that they are stricken with
a poorly understood and often
underestimated pathogen.
Origin and variations of Borrelia
burgdorferi.
The pathogen that causes Lyme
disease is Borrelia burgdorferi, a
highly motile spirochete that belongs
to a genus of bacteria notorious for
giving rise to variant strains.
Borrelia are bacteria that are associated with dozens of tick and louseborne relapsing fevers that are found
throughout the world. The symptoms
of these related illnesses range from
mild fevers to rapidly fatal encephalitis. The hallmark attribute that most
Borrelia bacteria have in common is
their ability to adapt, change and
infect many host animals that in turn
infect many species of ticks and lice.
(See Oscar Felsenfeld’s book
“Borrelia”)
We know for example that if you
rank all the known Borrelia pathogens in a phylogenetic tree based on
related genetics, you will find that
most of the disease-causing pathogens that cause similar symptoms
will often end up very close together
in related groups.
In other words, Borrelia burgdorferi, Borrelia afzellii and Borrelia
garinii that cause Lyme disease in
America and Europe are all genetically similar to each other and have
similar tick vectors. It is believed
that they are closely related and
variations occurred as separate tick
populations over hundreds of years
migrated with animal populations
and the bacteria became isolated
populations. At one time all Borrelia
must of had a common ancestor.
Exactly how long ago we don’t
know, but the evidence of common
ancestry is in their related and
similar genes. This year when the
genomic sequence of Borrelia
burgdorferi was determined, it came
as quite a shock that most of the
genes (about 2/3) in this large
bacterium had no known counterparts or similarities to other known
bacterial genes. This means the
function of the majority of the genes
Page 3
the Lyme Times
in the Borrelia species has yet to be
determined.
Could Borrelia’s genetic expressions of these unrecognized genes
be the source of unique symptoms?
We know that when the Lyme
bacteria Borrelia burgdorferi enters
a human host it preferentially
expresses certain genes and suppresses others. This allows the
bacteria to adapt to new environments within the human body. But
what does it take for Borrelia
burgdorferi to express one of the
suppressed genes of its ancient
pathogen cousin?
Borrelia burgdorferi has unexpressed genes that are latent, but
intact. If a gene is expressed or
triggered by the environment, as it is
suggested by research done of
relapsing fever strains, it is possible
that a latent but deadly gene might
be triggered in one individual with
unique genetic markers while the
same bacterial gene is not expressed
in another patient. Such pathogenhost interactions based on patient
genetic markers might explain why
some Lyme patients have persisting
symptoms.
Are variations of Borrelia burgdorferi during cell division allowing
the pathogen to evade our own
immune system and take root in
other areas of the body?
Dr. Andrew Pachner infected
mice with Borrelia burgdorferi and
later extracted the bacteria from the
blood and from the brain of the
infected mice. What he found was
basically that the Lyme spirochetes in
the brain had changed: they now
expressed a new set of genes that in
turn were expressing a new set of
surface antigens. The result was
bacteria so different from what he
started with, that the antibodies from
the peripheral blood could no longer
detect the bacteria isolated from the
brain.
This is bad news since the brain
is immunologically isolated from the
rest of the body. If the Lyme spiroPage 4
chete can adapt to the human brain
and circumvent the peripheral
immune system, the spirochetes
trapped in the brain are less likely to
be affected by our natural immune
defenses, for instance our antibodies.
Further studies by Pachner using
PCR in primates suggested persistence of Borrelia DNA in the brain
after antibiotic treatment. This is
more bad news as this suggests that
the brain is an isolated and protective
incubator for Borrelia bacteria. In
other words, once the bacteria are
trapped in the brain, they may act
differently from the bacteria circulating in the blood.
What other gene expressions of
these bacteria do we need to
understand better?
Patient individuality plays a role
in the bacteria’s response. Understanding the recently sequenced
genomic sequence of Borrelia
burgdorferi and gene expression is
essential to understanding both
chronic and acute Lyme disease. In
patients with HLA-DR2 & HLA-DR4
tissue types, are there markers in the
joints responsible for chronic Lyme
arthritis? We need to study the role
of genetics, and receptor sites in both
humans and within the Lyme
spirochete. How the bacteria interact
with one person may be radically
different from how it acts in another
patient. This may explain why some
families are so hard hit by Lyme. The
role of tissue receptors for Borrelia
has yet to be explored.
One of the most frequent complaints from Lyme patients is the loss
of cognitive abilities. Their minds
are foggy and they complain of shortterm memory loss and poor word
retrieval. Their fear is: How permanent is this memory impairment?
And will it progress? We don’t know
why so few bacteria can cause such a
profound affect on conscious thought.
Lyme bacteria are found in the
human body in extremely low
numbers. Why are there so few
bacteria in a Lyme infection? There
may be other forms (sphereoplasts or
cell-wall deficient forms) of the
bacteria in greater numbers that we
just aren’t recognizing. How can so
few bacteria cause such horrible
symptoms like cardiomyopathy,
encephalitis, hepato-spleenamegaly,
heart arrhythmias, rheumatoid-like
arthritis, optical neuritis, Bell’s
Palsy, muscle spasms, fibromyalgia,
and multiple-sclerosis-like presentations? It may be that a small number
of bacteria initiate cascade responses
of inflammation and autoimmunity
in the human body. If autoimmunity
is playing a role, how does it affect
the various tissues? For example,
what determines if a patient has
Lyme-arthritis or an MS-like
disorder? We currently only have
fragments of data that suggest
genetics play a role.
Lyme Disease, MS, and
Alzheimer’s disease
Since 1918 dozens of papers have
associated spirochetes with Multiple
sclerosis. The most dramatic and
convincing of these papers were all
published prior to 1954, decades
before the numerous controversies of
Lyme disease appeared. In recent
experiments using a rat-brain model,
one researcher showed that Borrelia
burgdorferi was directly neurotoxic
to neurons and caused the death of
brain cells on contact. This happened
rapidly and consistently. This means
there is an evolved mechanism
within the Borrelia bacteria when in
contact with the CNS of some
mammals not only to change its own
antigenic identity, but to paralyze
and destroy neurons and glial cells.
[Neurons are cells that make us
think, and glial cells help repair
them.]
In recent years the incidence of
Alzheimer’s disease has risen
sharply. Research has shown that the
incubation of Borrelia burgdorferi in
mouse brain cultures for eight weeks
resulted in creating many of the
laboratory markers for Alzheimer’s
disease.
Spring 2004
Publication of the California Lyme Disease Association
In this in-vitro model we see the
synthesis of amyloid precursor
protein and the rapid conversion to
amyloid and beta sheet amyloid. We
see the hyperphosphoralation of Tau
protein; we see similar fibrillary
tangles and fibrin deposits. In other
words we can essentially create a
laboratory model of Alzheimer’s invitro simply by adding Borrelia to
living brain cells. An animal model
of Alzheimer’s was something
researchers dreamed of for decades,
and now that it is within our technical abilities. Almost no one is
exploring this model of Alzheimer’s
pathology, and no adequate funding
is immediately available.
Brain-cell research is needed to
learn more
What receptors are on the
Borrelia membrane that triggers
neuron destruction? What causes the
cascade of Amyloid synthesis in
brain-cell cultures? If we knew these
things we could potentially develop
new treatments to prevent amyloid
production in Alzheimer’s patients,
and perhaps a way to stop neurological damage in Lyme patients.
Scientific research could save lives
and dollars.
If even a few percent of the cases
of MS and Alzheimer’s disease were
caused by spirochetes, we could save
countless people from the morbidity
and disability of these diseases, and
billions annually in health care costs.
But we need much more than money
and research to explore the link
between Borreliosis and dementia in
humans. Clearly, if it turns out that
spirochetal infections are playing a
role in some dementias, as some data
suggest, we need to find out for sure
through scientific research and
behavior studies.
Who to treat and how to treat
Millions of dedicated research
dollars are needed for substantive
research to establish whether a link
between M.S. and Lyme disease does
or does not exist. Even a 1 %
incidence would be an important
Number 36
finding. Unfortunately, more funding
is currently being applied on deer
studies, while almost nothing with
respect to Lyme disease is being
spent on dementia research. There
are other needs beyond money.
Human brain tissue from dementia
patients and MS patients will be
required for analysis. To obtain these
samples, we would need to pre-enroll
affected volunteer patients into a
nationwide autopsy study program
and create a tissue bank for the
tissues, then, make them available to
researchers to look specifically for
spirochetes and the markers of
Borrelia. Prior to this however, we
will need to train pathologists in the
specific techniques of detecting
spirochetes. Without proper instruction, the detection of spirochetes is
virtually impossible on a normal
autopsy.
With a national annual budget of
a mere $7 million to study Lyme
disease and to educate the public, we
are about $100 million short of an
effective Lyme disease research
program in the United States
A tissue bank dedicated to storing
and preserving brain tissue from
dementia patients is an inexpensive
investment whose dividends could be
priceless. Beyond Lyme disease it
allows access for researchers to
investigate countless avenues of
research for decades to come, with
new technologies that even now are
on the verge of being discovered. But
to achieve this we need a vision of
the future and funding that reflects
our vision.
Tom Grier is a patient advocate
and writer who lives in Minnesota.
Letters
Former MS patient looking for
other MS/Lyme patients
I was treated for secondary
progressive multiple sclerosis (MS)
and then for primary progressive MS
for nine and a half years before I
found a Lyme-literate doctor and
discovered that the reason for my MS
symptoms was untreated Lyme
disease.
I am looking for others around
the world who were told they had MS
and who learned that the culprit
behind their MS symptoms was
Lyme or one of the co-infections. I
am trying to get as many names and
stories of people who were treated for
MS to only learn the culprit behind
the MS symptoms was a tick-borne
illness.
I want physicians to treat MS
with antibiotics instead of steroids
which suppress the immune system
and make the Lyme stronger.
I gave my testimony on January
29 to the attorney general for my
state of Connecticut. What is going
on is a huge injustice to so many of
us, and I feel if all the groups all over
the world work together we can make
changes.
Tammy Szczepanski
Southington, Connecticut
Tammy’s e-mail is Talyn
[email protected]. If you do not have
email, write c/o the Lyme Times and
we will forward your letter to
Tammy.
Newspaper prints her letter encourages others to write
I wrote to the newspaper that
recently had the article about a lady
in Kentucky who found out she had
Lyme disease. They asked if they
could print my opinion. My letter is
reproduced below. Feel free to do the
same if you want to and that way
more people will show how common
Page 5
the Lyme Times
Lyme disease is.
My response to newspaper:
Early diagnosis is critical with
Lyme Disease
I just read the story about Cheryl
Houk and her experience with
finding out she has Lyme disease. I
have a friend in Kentucky who was
diagnosed with fibromyalgia, but I’ve
often wondered if it might be Lyme
disease instead.
My heart goes out to Cheryl and
her family and I speak from experience. My family lives in Kentucky
(parents, sisters, niece, nephews,
etc.) but my husband and I live close
to Nashville, Tenn.
I was diagnosed with Lyme
disease more than a year ago. I went
through more than two years of tests
and specialists before it was finally
diagnosed. Actually, the doctors
never found it. I told a friend about
my symptoms. She suggested what
test I should go for and it came back
positive.
I thank God, and I know that she
was my angel because the neurologist
was getting ready to put me on
steroids and diagnose me with
multiple sclerosis. I thought I’d share
a little of my experience with you.
I believe that it is very important
to share our stories with others so
that more people will find out that it
is everywhere. My motto is “together
we can make a difference.”
I want to thank you for writing
the article. People like you are the
ones who are helping us get the
information out there to the public. It
is a devastating illness, both
healthwise and financially. Early
diagnosis is crucial. I have joined a
Nashville support group. The
members of our group are so supportive, encouraging and educated. I
encourage anyone who is affected by
this illness to do the same.
Debbie Smith
White House, Tennessee
The original article appeared in
the Central Kentucky News Journal
Page 6
on Thursday, Nov. 27. The website is
www.cknj.com. Support groups may
be located by going to
www.lymenet.org.
Doctors thought Lyme possible years previously but
never followed up
Intravenous antibiotics have been
recommended for my daughter to
treat her Lyme, which includes
neurological symptoms. Months of
orals have failed to produce much
progress.
To prepare for the appointment, I
decided to request the consultation
note from the neurologist at
Children’s Hospital whom Maia had
seen in the 7th grade (January, 2000)
on referral from her cardiologist. He
wanted her seen before undertaking
symptomatic treatment of her
autonomic nervous system dysfunction (e.g., low blood pressure,
tachycardia).
At that time, after a 2-3 year
downward course (we think, in
retrospect, she had been showing
signs of Lyme at least as early as the
4th grade, when the chronic cough
had started, followed by the GI
symptoms), she had become more
acutely ill - had really bottomed out that’s when she had developed
balance and gait problems, tremor,
blue extremities, severe vertigo,
peripheral neuropathies and the
cognitive problems. Some of these
symptoms have improved, notably
the balance and gait problems and
the vertigo (and the cognitive to
some extent - she can read now with
excellent comprehension), but we
Send your letter to Editor,
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1423, Ukiah, CA 95482;
or email
[email protected]
thought it was important for the new
doctor to see the documentation.
By some miracle, the office at
Children’s responded quickly and
faxed the consult note to me, which
was addressed to the referring
cardiologist and cc’d to our pediatrician (who now claims never to have
seen it; indeed, it wasn’t in Maia’s
medical chart).
After examining Maia, this
neurologist had ordered an MRI to
rule out childhood onset MS, as well
as blood tests to rule out metabolic/
malabsorption abnormalities due to
the GI problems. This is all he spoke
to us about, before telling us to
schedule a follow up appointment.
for 3 months later. Keep in mind that
Maia couldn’t walk a straight line at
that time. We didn’t hear from him
for quite some time, and had to call
him for the results of the MRI and
other studies, all of which were
normal. He left this information in a
message with our nanny, in response
to our phone call . The cardiologist
began the treatment, a physician in
NY state and another local doctor
made the diagnosis of CFIDS and we
cancelled the 3-month follow up with
the neurologist, given how uninterested he seemed in Maia’s symptoms
and condition, and in view of the
negative test and lab findings.
Imagine our shock and surprise
when we read for the first time last
week the final lines of this consult
note from January, 2000, which I
will paraphrase: “If the results of
these tests are normal, I have
discussed (not clear with whom, but
not with us!) the possibility of
performing a spinal tap down the
road. There is no rush. This would be
done to further rule out MS and the
possibility of central nervous system
Lyme disease.” This fellow did
mention the negative Lyme ELISA
and lack of history of rashes elsewhere in the letter. He also had
mentioned something we had
forgotten: her complaints of a stiff
neck for two months.
Spring 2004
Publication of the California Lyme Disease Association
Need I say more? No one ever
brought this last possibility up with
us, not the neurologist himself when
he called with the results, not the
cardiologist, whom Maia saw for
over a year, and not our pediatrician,
who said she never saw the letter (it
has her correct address on it). Here
we are, three years later, staring
neuroborreliosis right in the face
(keep in mind that Maia was the
second of our three children to get
sick, and that my oldest son had been
seen and missed by as many as 5
different neurologists in the Worcester-Boston medical community. His
autonomic dysfunction was even
more pronounced than my
daughter’s).
Heroes
Photo courtesy LDA
Brian Fallon
in his Columbia
laboratory.
Fallon is also
lead investigator in a $4.7
million NIH
clinical trial on
treatment of
chronic
neurologic
Lyme disease.
There must be something more
that we can do to bring better
awareness to physicians.
Sheila Statlender
Framingham, Massachusetts
Infusion company offers lower
cost drugs
In your last newsletter, you
printed information about comparing
costs for drugs in order to get the
best price. I would like to suggest a
source for people without insurance
or insurance that won’t pay for
infusion therapy: Infuserve America.
It is an infusion company in Florida
that knows Lyme disease and
provides lower cost drugs and
supplies. Patients who need long
term IV and are having to pay for it
themselves can get more information
on the company at
www.infuserveamerica.com or 1800-886-9229. A prescription is
needed. They will ship.
Linda Finn
by email
Number 36
Dr. Brian Fallon of Columbia
Receives Two Awards
Brian A Fallon, MD, MPH, MEd,
Associate Professor of Clinical
Psychiatry at the Columbia University College of Physicians and
Surgeons, has been given awards by
two education and patient advocacy
organizations – the New Jersey-based
national Lyme Disease Association
(LDA) and California Lyme Disease
Association, an LDA affiliate. The
LDA award was presented at the
November LDA conference in
Philadelphia. In her presentation
speech, LDA president Pat Smith
called Fallon a “highly principled
researcher as well as a dedicated
physician” whose decade of research
has moved the cause of neuroborreliosis forward.
“We in the Lyme community owe
Dr. Fallon a great debt of gratitude,”
stated Smith. “Much of his work
focuses on the problems of children
with Lyme disease and the resultant
functional difficulties they experience, especially in the schools.”
Renowned author Amy Tan, who
has just written a book the tells her own
personal Lyme disease story, presented
Fallon with a plaque praising him for
his outstanding leadership in research.
Page 7
the Lyme Times
The plaque also recognized Fallon’s
“dedication, compassion, and commitment to improving the lives of those
with Lyme disease, especially the children.”
bia Center in a letter recognizing
fundraising efforts of the LDA and
its affiliate, Time for Lyme (previously Greenwich Lyme Disease Task
Force).
In making the presentation, Tan
thanked Fallon for his dedication to
scientific inquiry and his compassion
for patients.
“The Center’s mission will be to
advance understanding of the
symptoms, causes, diagnostic
techniques of Lyme and other vectorborne diseases,” Fallon wrote. “The
research at the Center will address
pressing scientific questions targeted
to the ultimate goal of improving the
clinical care of children and adults
with Lyme disease. The philosophical basis for this Center rests on the
assumption that excellence in
research requires a close collaboration between basic scientists and the
clinicians who are treating these
patients. The dilemmas faced by
clinicians will inform the research
questions. Given this philosophy, the
Center will have both basic science
and clinical components….”
“ I feel prvileged to be a subject
in one of his studies, she said. “ I’m
convinced that his research and work
in physician education are going to
make the essential difference in
changing attitudes about both
diagnosis and treatment of neuroborreliosis. It’s work like his that
sustains our hope. But beyond his
accomplishments, he is also what we
call in the patient community, ‘a real
sweetie,’” she added. “Thanks,
Brian, and congratulations,” she
concluded.
Fallon is the director of the
Lyme Disease Research Program at
the New York State Psychiatric
Institute. A graduate of Harvard
College, he obtained his MD degree
from the Columbia University
College of Physicians and Surgeons,
as well as a Master’s degree in public
health epidemiology from Columbia
University. He did his research
training and an NIH fellowship in
biologicial psychiatry at Columbia
Presbyterian Medical Center and the
New York State Psychiatric Institute. In addition to his work on
anxiety, obsessive compulsive
disorder, and somatoform disorders,
Dr. Fallon has published numerous
articles on Lyme disease in peerreviewed medical journals and
lectured widely on the neuropsychiatric effects of Lyme Disease. Currently, Dr. Fallon is the principal
investigator of a 4 year NIH-Funded
study of Brain Imaging and Treatment of Persistent Lyme Encephalopathy. He also heads a future
Columbia Lyme Disease Research
Center that will focus on late stage
Lyme disease, with special emphasis
on the brain.
Volunteers have already raised
about $1.5 million toward the $3
million required to open the Center.
(See donation form on page 63)
California Lyme Disease Association (CALDA) also chose Fallon for
their annual 2003 Distinguished
Physician Award that recognizes a
physician for clinical excellence,
leadership, compassion, and dedication to the treatment of Lyme disease.
“Dr. Fallon not only met all these
criteria, his work on neuroborreliosis
represents the ultimate achievement
of clinical training applied to
scientific inquiry,” said CALDA
Awards committee member M.
Barkley, PhD, MD. “Dr. Fallon’s
contributions to the study of Lyme
and Lyme-related neurological
disorders combines knowledge of
noninvasive diagnostic criteria with
patient responses to treatment that
promise new advances in physician
recognition and care of patients
suffering from tick-induced illnesses.” Dr. Barkley, professor
emeritus of neurobiology at UC
Davis, devotes her time to Lyme
research.
The first CALDA Distinguished
Physician Award recipient was the
late Paul Lavoie, MD, of San
Francisco, a specialist in rheumatology and internal medicine.
Distinguished Physician Awards
were given in 1997 to Edwin
Masters, MD, of Cape Girardeau,
Missouri; in 1998 to Dr. Joseph
Burrascano, Jr., of Southampton,
New York; in 1999 to Kenneth
Liegner, MD, of Armonk, New York;
in 2000, to pediatrician Charles Ray
Jones of New Haven, Connecticut; in
2001 to California pediatrics specialist Shun Ling, MD, of Tarzana; and
in 2002 Richard Horowitz, MD, of
New York.
Photo courtesy LDA
LDA president
Pat Smith and
author Amy
Tan present an
award to Brian
Fallon, MD
(see story on
page 7)
Dr. Fallon described the ColumPage 8
Spring 2004
Publication of the California Lyme Disease Association
Recruits still needed for NIH-funded retreatment study of
chronic Lyme
Who is the Principal Investigator of the study?
Brian A. Fallon, MD
What are the goals of the study?
1) to determine whether 10 weeks of IV antibiotics result in further improvement among patients who have
already received the standard amount of treatment.
2) to determine whether the brain abnormalities in Lyme Disease are primarily due to blood vessel inflammation or a nerve metabolism problem.
3) to identify clinical or biological markers that might be associated with treatment response.
Who may be eligible to participate?
We are seeking 45 patients ages 18-65 who have persistent problems with memory, verbal fluency, or
attention after having contracted Lyme Disease. Patients must be able to travel to New York for 4-5 evaluations
over the course of one year. Travel costs for patients in need may be partially or fully reimbursable. Participants
must have had a history of well-documented Lyme Disease using the CDC's clinical criteria and a current
positive IgG Western blot or PCR. Patients must also have received at some point in the past at least 3 weeks of
IV antibiotic therapy for Lyme Disease. Excluded from participation would be people with other major medical
or neurologic problems, people who smoke more than 10 cigarettes/day, people with uncontrolled high blood
pressure, and people who have a history of marked cocaine abuse. We are also seeking 20 healthy subjects.
What is the study design?
For each patient, this is a 24-week treatment study that will evaluate response to treatment using neuropsychological testing and state-of-the-art brain imaging. There is no financial charge for participation in this study.
The brain tests include neuropsychological testing of memory and attention, brain imaging (MRI and PET
scans) to look at blood flow in the brain and nerve cell structure and metabolism, a neurological exam, and
studies of the fluid that surrounds the brain (“the cerebrospinal fluid”). The treatment involves 10 weeks of
either intravenous antibiotic (Ceftriaxone aka “Rocephin”) or intravenous placebo (inactive substance). There is
a 2 out of 3 chance of getting the real medicine and a 1 out of 3 chance of getting the placebo. (At the end of the
24 weeks, patients who got placebo will be given the option of getting 6 weeks of the actual medicine at no cost).
After the first visit, the remaining treatments will be done in the patient's home. Patients will be screened over
the phone and in person to confirm study eligibility. The neuropsychological tests will be done 4 times (screening, baseline, week 12 and 24) and the brain imaging (MRI and PET scans) and physical exam will be done 3
times (baseline, week 12, week 24). From the patient's home, blood tests and self-report ratings will be done
more frequently. A lumbar puncture will be done once at the start of the study in order to study the cerebrospinal
fluid to look for markers of infection. There is also a 6 month follow-up at the end of the study at which time
neuropsychological testing will be repeated. Therefore, over the first 6 months, the patient will visit Columbia at
least 4 times, followed by an additional visit 6 months later. The patient's physician will receive a report at the
end of the study summarizing the results for his/her patient. Additional studies addressing infectious and
immunologic markers in the serum and CSF have been funded by the Wilton Lyme Disease Task Force, the
Greenwich Lyme Disease Task Force, and the Lyme Disease Association.
Where can I get more information?
You may access the website Frequently Asked Questions about this Study by going to http://www.columbialyme.org/flatp/NIHstud-n.html.
How do I contact you?
Call the treatment clinic at 212-543-6510 between 9-5 pm EST to make an appointment or call our study
coordinator, Dr. Kathy Corbera, at 212-543-6508.
You can also fax us a copy of the screening questionnaire or send it to us by computer transmission. Our fax
number is 212-543-6515. You may also email us at [email protected].
Number 36
Page 9
the Lyme Times
Beginners’ Pages
Public Health is not informing
the public of health dangers
by Mark La Fevers
I’ve been a resident in
Carpinteria for 45 years and graduated from Carpinteria High School in
1972. [Ed.–Carpinteria is located on
the southern California coast just
north of Los Angeles] I’ve enjoyed
living in a home in the foothills for
the last 16 years with my wife and
two sons.
Lyme
Disease
in
California
I have never been to the East
Coast, where Lyme disease is most
heavily concentrated. The appearance of the Lyme rash on my left
forearm, at a bite site, looked like a
plum colored bruise the size of a
hardball. I was briefly ill, then
recovered, and did not become aware
what this bruise meant for about ten
years.
My first symptoms of fatigue,
deep burning bone pain, joint and
Page 10
muscle pain and sleep disturbance
did not occur until five years after
infection. One by one I gave up every
physical hobby and recreation and
chore I could shed. Then I began
missing work, unable to finish the
day or unable to finish the week, four
years after onset of symptoms. It took
about five years
from onset of
symptoms (10 years
after infection) and
five doctors to get a
diagnosis, with the
first specialty blood
test (Western Blot)
showing positive,
having had no
previous
antibiotic
use.
Two doctors later, one and a half
years into antibiotic treatment, I am
much better, but far from symptom
free. I have not missed any work
(heavy equipment mechanic) for over
a year now. Initial treatment made
my symptoms worse, and brought on
new ones. This is called a JarischHerxheimer reaction and is a good
thing, only one of the hard things to
believe about Lyme, not even one of
the hardest in my opinion.
It may not sound like it, but my
experience with Lyme disease is a
success story. It is my opinion that if
I had not found an explanation and
help for my health problems, I would
now be partially or fully disabled.
The very first hurdle to overcome
with Lyme disease is awareness,
hopefully this article will help others.
What is it?
Lyme disease is a serious bacterial infection most commonly
vectored to humans by the bite of an
infected tick. It is not casually
contagious. The symptoms it produces can be mild or severe, masquerading as more than 50 other
illnesses. Depending on complex
factors it can be fatal to humans or
have no effect.
Lyme was first recognized in
1975 by the arthritis it caused in
children, but headaches, mood and
sleep disorders, cognitive and
learning disabilities, fatigue and pain
are some of its calling cards. To date
its diagnosis remains clinical, based
on physician evaluation, because no
single laboratory test can confirm or
deny its presence, even in very sick
individuals. Many local doctors, as in
the rest of the nation, are not
knowledgeable about Lyme.
Early treatment with antibiotics is important and
generally effective,
whereas long-term
illness is sometimes
incurable. It has been
recognized in
California since 1978.
Depending upon the
model, Lyme is either
the first or second fastest growing
vector borne disease in the United
States.
What does Lyme disease look like?
Before you tell yourself that you
don’t know anyone in Carpinteria
with Lyme disease, ask yourself this:
Do you know anyone here with
multiple sclerosis? Or fibromyalgia?
Or chronic fatigue syndrome, lupus,
Parkinson’s Disease, Alzheimer’s?
Spring 2004
Publication of the California Lyme Disease Association
These are neurodegenerative diseases
that are the most common misdiagnosis of Lyme disease.
The Lyme bacteria are neurotropic, seeking out nerve tissue and
causing a wide range of damage.
They are very hard to identify in the
living human system. Some physicians that are knowledgeable about
Lyme disease believe these
neurodegenerative diseases are Lyme
until proven otherwise, meaning not
excluded by a single test but carefully
evaluated as if they were Lyme.
In Carpinteria? Is it possible to
contract Lyme disease in
Carpinteria? The most likely areas to
come in contact with Lyme disease
are the foothills and damp coastal
side of the mountain range from
border to border. Thousands of
residents, including Boy Scouts,
campers, equestrian groups, the
agricultural community and many
others are active in that zone. Are
these groups aggressively forewarned? Well, maybe not.
One of the difficult challenges
that face public health administrators, disease surveillance and
reporting agencies, is finding a
means of public contact that is
effective and inexpensive. Though
posted information on Lyme disease
is becoming available in some public
places like Los Padres National
Forest sites, much information on
this issue remains obscure to most
local residents.
Informed citizens in a democracy
The concept “forewarned is
forearmed” is difficult to implement
in the local context of a growing
array of public health risks. Coupled
with limited manpower and funding,
the result is like a fairly coarse net
trawling the ocean of public health
risks, capturing for public view the
“whales” but not the barracuda,
epidemic flu, etc. Slipping through
the net and commonly out of public
sight are the lesser understood,
harder to verify, but no less real
pathogens.
Number 36
You already knew all this
because. ..if the current system was
working you would know these
things. If you didn’ t know these
Lyme disease basics, it’s important to
ask why not.
The current model for communicating Lyme disease risk potentials to
the public is largely passive, a “We
post it, you find it” approach. The
United States Army Lyme Disease
Risk Assessment Studies rated
Vandenberg Air Force Base, located
near Carpenteria, High Risk for
contracting the Lyme bacteria in
1995, and samples remain positive
there today.
California Department of Public
Health information shows that ticks
infected with Lyme disease have been
found in 41 of 58 California counties, including ours; that Santa Ynez
is a hot spot; that there are local
cases of Lyme disease; but you have
to ask.
There are reputable labs that use
state-of-the-art tests on suspect ticks
to look for the pathogen. Lyme can
be misdiagnosed as a baffling array
of diseases because it can affect every
organ and system in the body and
mimic illnesses that are not Lyme,
but you have to ask.
Why do you have to ask?
Isn’t it somebody’s job to keep
the public informed? Though there
tons of information available to the
public on this issue the only catch is,
to find it you still have to ask! Thus
the small but dangerous potential for
contracting Lyme here is kept alive
but hidden from many that could be
protected by awareness. Local
residents shouldn’t just be content
reading the lettering on the caboose
of the train they just got hit by. I
think the flashing arms should come
down automatically and wake us
from other distractions in time to
avoid the collision.
For a list of resources on learning
more about Lyme disease see this
article on www.coastalview.com.
Tick Removal
Tick’s mouthparts have reverse
harpoon-like barbs, designed to
penetrate and attach to skin. Ticks
secrete a cement-like substance that
helps them adhere firmly to the host.
If you find that you or your pet has
been bitten by a tick, it is important
to remove it properly.
Tick Removal Procedure:
• Use fine-point tweezers to grasp
the tick at the place of attachment, as
close to the skin as possible.
• Gently pull the tick straight out.
• Place the tick in a small vial
labeled with the victim’s name,
address and the date.
• Wash your hands, disinfect the
tweezers and bite site.
• Mark your calendar with the
victim’s name, place of tick attachment on the body, and general health
at the time.
• Call your doctor to determine if
treatment is warranted.
• Watch the tick-bite site and your
general health for signs or symptoms
of a tick-borne illness. Make sure you
mark any changes in your health
status on your calendar.
• If possible, have the tick
identified/tested by a lab, your local
health department, or veterinarian.
If the mouthparts break off in the
skin - should I dig them out?
We have heard two competing
opinions about this.
One viewpoint states that the
mouthparts can cause a secondary
infection, and should be removed as
if it was a splinter.
Another viewpoint was shared
with us by a pediatrician in a
hyperendemic area. He states that
parents can do more harm by trying
to hold down a child and dig out the
mouthparts with a needle. He
instructs his families to leave the
mouthparts, and that they will come
out on their own as the skin sloughs
off.
Page 11
the Lyme Times
Fifty-five counties [Ed.– now 56]
are known to have ticks that carry
Lyme disease. According to Dr,
Alvarez, Deputy Health Officer,
Santa Barbara County, prevention is
the key.
• Wear long pants.
• Transmission is negligible if the
tick is removed immediately.
• Have someone examine your
body after hiking and remove ticks, if
any, within 24 hours.
“We communicate to the physicians through our newsletter to
remind them that there is Lyme
disease out there. It’s difficult to
diagnose because the symptoms are
vague and general. There is small
percentage of infected ticks compared to the number of hikers,” said
Dr. Frank Alvarez, director of the
Santa Barbara Communicable
Disease Center, and link between
Vector Control and local area
physicians. His office faxes doctors
quarterly on disease status in the
area.
Mitch Bernstein, District Manger
of the Santa Barbara Coastal Vector
Control, captures ticks and tests them
for Lyme disease while doing test
surveys. “We haven’t found any
positive results for Lyme disease,” he
said. “It’s a controversial disease.
Symptoms are similar to other
diseases. The last test was done last
spring when several hundred ticks
tested negative. We are gearing up to
face the West Nile Virus but we will
be checking for Lyme disease
periodically.”
The author wrote this story for
his local paper, Coastal View, where
it was originally published.
tion. Once it is applied most ticks
will curl up and fall off if they make
contact, and will eventually die if
there is prolonged exposure.
Both DEET and permethrin have
come under criticism for possible
human side effects. DEET has been
associated with human case histories
of neurological damage and even
death, and products greater than 40
% were restricted in some states.
Permethrin has been implicated in
possibly contributing to Gulf War
Syndrome. But those studies involved
mixing permethrin with DEET and
applying it directly to the skin of
mice that were then given military
vaccines.
Pros and Cons:
DEET needs to be applied
regularly and can only work as it is
evaporating. Permethrin works for
weeks after it has dried inside
clothing fibers.
DEET versus Permethrin as a
Tick Repellent
DEET is applied directly to the
skin and can be absorbed through the
skin. Permethrin is applied to
clothing only and has limited contact
to the skin.
By Tom Grier
DEET has a detectable odor.
Permethrin smells only until it dries.
Springtime is tick-time and that
means we will soon be seeing those
cautionary ads on TV telling us to
use tick repellents. In almost every
instance the active ingredient in
those advertised tick repellents will
be DEET the active ingredient in
most mosquito repellents.
DEET is an excellent mosquito
repellent, but it is a fairly poor tick
repellent. The reason we are inundated with so many DEET repellents
is because there are several huge
corporations that manufacture
hundreds of variations of DEET
products. There is only one small
company (Coulston) that markets a
handful of competitive tick repellent
products for human use. These
products that contain 0.5 %
permethrin.
There are pros and cons to each
product but as a tick repellent,
Page 12
Coulston’s
Permanone
Brand 8 oz
Trigger Spray
.5 % Permethrin
FabricTreatment
also Labeled For
Use On Dogs
DEET does not kill or disable
ticks and is a poor repellent. Permethrin works instantly and is
extremely effective. It is the tick
repellent of choice by the military.
DEET can melt synthetic clothes
like nylon. Permethrin causes no
damage to any known cloth or
synthetic fiber.
DEET products are easy to find.
Permethrin is hard to find and more
expensive.
permethrin wins hands down.
Permethrin is an insecticide derived
from a chemical found in the
chrysanthemum family of plants. It is
a spray that is used on clothes only,
and is deactivated and made less
effective by the oils on our skin.
Once it is sprayed on our clothing it
becomes odorless and can last for
several weeks with a single applica-
DEET is a very effective fish
repellent. Permethrin’s effect on fish
is unknown.
Permethrin containing products
that are approved for human use are
manufactured by Coulston labs, and
can be found under labels such as
Duranon, Permanone, and Congo
Creek Tick Spray. A 0.5 % veterinary permethrin product can be
Spring 2004
Publication of the California Lyme Disease Association
found in most feed stores and horse
supply shops as a horse tick repellent. The veterinary products tend to
cost about half the price per ounce as
the human-use product.
In a field test that the Minnesota
Insect-Borne Disease Education
Council did in Jay Cook State Park
in Northern Minnesota, they found
that the permethrin products outperformed the DEET containing tick
repellents. A walking shoe was
sprayed with Duranon 0.5%
permethrin. Then three weeks later it
was tested against a recently sprayed
shoe using Deep Woods Off 35 %
DEET. The ticks that made contact
with the Duranon shoe immediately
rolled up and dropped off. The ticks
on the soaking wet DEET saturated
shoe continued to crawl unimpaired.
One last thing that people who
like to fish should know about
DEET. DEET is perhaps one of the
most effective fish repellents known
to man. Just a few parts per million
can send game fish like salmon and
trout to the other end of the lake. So
if you like to keep mosquito repellent
in your tackle box you may have
unknowingly contaminated your
fishing lures! Take care to not handle
any fishing tackle once you have
applied mosquito repellent as just a
few parts per million can repel more
fish than mosquitoes.
To avoid ticks
• Tuck your shirt into your pants, and
wear a hat.
• Spray your shoes, socks, belt-line,
collar, and hat with a permethrin
containing tick repellent.
• Do a tick check after walking in
high-risk areas, and
• Put any clothes that might have live
ticks on them into a hot dryer for ten
minutes to kill all insects.
Keep your Family Safe ! Do Tick
Checks !
You can view more information
about ticks and order Coulston
products on the internet at http://
www.tickinfo.com/ or call (800) 7498425.
• Wear light colored clothing.
• Tuck your pants into your socks.
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Number 36
Page 13
the Lyme Times
Front Lines
Marriages that are way out of
“Lyme”... and the experts who
make them explosive
by Virginia T. Sherr, MD
My work as a psychiatrist
involves occasional office marital
therapy. Lately most serious marital
conflicts that end up here usually
reveal previously unrecognized
chronic Lyme disease as an underlying cause in one or both partners.
After infection, the symptomatic
mates are frequently so irritable, so
cognitively and emotionally compromised that they have great difficulty
coping with the other person or even
with themselves. If there is a noncomprehending physician in the
situation, the conflict may become
even more incendiary.
Adverse situations that previously
loving couples get into may be
similar but also may show considerable variability: A frustrated man
says to his doctor, “Look, my wife is
just plain loony. I don’t want to hear
anything about Lyme disease.
Where’s the nearest institution?
She’s impossible.” Or, conversely, an
exasperated woman might say, “He’s
become a slug. Goes to work and
goes to sleep– that’s it. Is that any
kind of a life? Now he even forgets
my birthday. I don’t matter to him
anymore. I’m tired of excuses. I want
a divorce.”
In the worst-case scenario,
unspeakably cruel things can happen
within this marital bond. Nearby
Levittown, Pennsylvania’s newspaper
reported a conflict involving a pair
who had contracted Lyme. Their
endless friction ended horribly in a
murder/suicide. Thus, by the time
tick-infected couples come to a
psychiatrist, serious verbal or
physical abuse between infected
partners may have gotten out of hand
Page 14
both ways, man to woman and/or
woman to man. (Likewise, of course,
there can be teen violence toward
parents or parents’ violence toward
children.)
At one extreme there are the irate
spouses. But there are also the
exceedingly solicitous spouses who
are supportive way past the point of
exhaustion. One couple I saw
recently fits yet another category.
Each one of this pair has contracted
(previously undiagnosed) sub-acute
Lyme encephalitis. The husband, VP
of his real estate company, has
significant cognitive losses. He
doesn’t easily perceive them because
he’s actually still functioning on 10
of his 12 cylinders. His wife does see
his memory losses, and was persistent in getting him medical help
before the memory loss became
permanent. Unfortunately, she
herself has bouts of significant
irritable impatience. Because of her
skill with problem-solving, and his
ability to muster an abundance of
patience whenever she is at her most
symptomatic, their marriage survived.
The husband’s original reluctance
to accept his diagnosis related to the
fact that physicians at a prestigious
Philadelphia university advised him
that he didn’t have Lyme disease,
despite his positive tests. He was told
that his wife was a faultfinder. And,
worse, she was probably trying to
unman him. Discounting his positive
Western antibody blot test, they said
he looked just fine, although they did
admit there were unusual, unexplainable, bright spots on his cerebral
MRI. Eventually overcoming this
bizarre advice, both mates were
properly diagnosed and treated, not
because of my persuasiveness, but
because they saw what Lyme disease
had done to their child.
This couple’s son has a diagnosis
of chronic neuro-Lyme disease. Both
partners love, protect and cherish
this child, so it was easier for them to
see how the infection was affecting
their son. Finally, they could see his
symptoms reflected in themselves.
They were better able then to grasp
the notion that the whole family was
affected, which enabled them to deal
with the infection in themselves—for
everyone’s mutual security. Not
infrequently, spousal support has to
extend to invalid children. Sometimes the entire family functions like
a group of “downer” cows in that the
infection brings everyone to his/her
knees.
In other kinds of physical
illnesses, breast cancer, asthma, or
heart failure for example, there is
unity—a pulling together of family
and physicians in order to support
the patient. But neurological Lyme is
generally unrecognized by most
doctors. When neurologic tick-borne
disease causes personality changes
that result in increasing impatience,
dramatic flares of anger, depression,
panic attacks, fatigue, and/or sudden
mood changes, many physicians lose
objectivity, forgetting the need to
consider organic causes of irritability. Therefore they have no awareness that Lyme, for example, can
wreck relationships and destroy the
very families that they are pledged to
help.
Brain-inflamed, infected people
Spring 2004
Publication of the California Lyme Disease Association
may impulsively say destructive
things, then wonder, “Did I say
that?” Either they don’t feel responsible for their words at all or they are
mortified by them. But the damage to
partners may already have been done.
Perhaps they’ve been almost unaware
of some small grievance for years –
then that tiny hot spot suddenly takes
inappropriate prominence as a life or
death issue. Venom is spewed
out…an unsuspecting spouse is left
breathless. The mood “seizure”
passes – but the accused mate feels
like s/he is left bleeding on the floor.
These verbal wounds may permanently change the relationship.
Unfortunately, the family doctor
is not always an ally to the couple,
and in his/her inability to understand, often tends to side with one
partner, thus missing both the big
picture and the opportunity to help.
A husband may take his wife’s
positive test to the family doctor who
says, “Yeah, right, your wife is going
to blame her attitude problem on
Lyme disease? She’s got to be
kidding…”
In this scenario, the woman is
discredited by both men and may be
lost. The husband’s feelings of
resentment are backed up or fostered
by the physician and there then
begins a growing a collusion between
him and the doctor. Doctors confronted with these scenarios could
more wisely say, “Let’s take another
look at this…” rather than being
dismissive of one partner, which only
tends to misidentify a person, not the
spirochetes, as causing the problem.
The most disturbing scenario of
this type of event that was ever
reported to me involved a patient
who took her husband with her to see
her famous medical internist in
Philadelphia. She had been worked
up thoroughly elsewhere and found
to have chronic neurological Lyme
disease. She had expected that this
world-famous physician would
validate her fatigue to her husband,
to explain that she hadn’t recovered
sufficiently yet to have back her usual
Number 36
energy for family, for sex or for
travel. She had tried to explain this
to her husband herself but he thought
she was being evasive. He complained that one of the stated goals of
their marriage had been to enjoy
activities together – to take trips,
dine out and have fun; they had
started out doing these things. When
his wife realized that she had no
energy, the loss of it translated into a
pronounced absence of self-confidence entailing a dread of being
around people. She had a new sense
Such a practitioner
displays not only
ignorance of the facts
of infection but
manifests a penchant
for playing a wrathful
God. Everyone loses
when that happens...
of incompetence and social failure.
Tired and insecure, she had finally
withdrawn socially.
What little confidence she had
left drained away when she turned to
her specialist for his support. The
doctor said to her in front of her
husband, “Just look at you! You’ve
let yourself go! Before you had this
supposed Lyme, you were full of life
and vigor. Look at you now. You’re
using Lyme disease to excuse the fact
that you are no fun anymore. You
look like a big zero. You’re not
taking care of yourself. What man
would want to be in your company?
You’re not even trying. If I were your
husband, I’d go out and have an
affair.”
often end up isolated, considering
suicide.
Such medical ethics violations by
a physician are equivalent to commission of medical-psychological
rape. Ignoring the Hippocratic
oath—doing harm while rationalizing that as being helpful—also
deprives the doctor of an excellent
opportunity to offer unique hope to a
couple, as well. Abusing patients or
their mates verbally bespeaks
judgmental arrogance and assumes
omnipotence. Such a practitioner
displays not only ignorance of the
facts of infection but manifests a
penchant for playing a wrathful God.
Everyone loses when that happens, as
with even the husband in this case—
a lonely man who eventually wished
desperately to come home.
As with all aspects of medicine,
and especially with Lyme disease,
doctors greatly need to remain
humble about what they do not fully
understand. They also need to be
willing to treat their patients’
relationships as if they were the
patients, themselves. Only then, can
the full ramifications of disease be
appreciated. Only then will the
doctor achieve that satisfying
maximal medical usefulness of
helping infected couples flourish in
their harsh personal environments.
The author is a member of ILADS
and practices medicine in Holland,
Pennsylvania.
The reader can easily guess what
happened next. She went home,
crumbled up, was ridiculed by her
spouse who then had an affair and
moved out of the house. People who
have been treated like this woman
Page 15
the Lyme Times
Lyme disease in children and
adolescents: parenting
dilemmas
by Sandy Berenbaum, CSW-R, BCD
I’m writing this as an introduction to the topic of “Parenting Dilemmas,”
and hope to address this topic further in future issues of the Lyme Times. This
is the first time I’ve specifically focused on “parenting dilemmas” and I
encourage readers to contribute by writing letters to the Editor of the Lyme
Times. I’d also like to see other psychotherapists participate in this discussion, so that a body of knowledge becomes available on how to help parents
deal with the non-medical side of Lyme disease in children and adolescents.
Parents of children who have
been diagnosed by a Lyme-literate
doctor are often relieved. The child
has had symptoms for months or
years, and has seen many doctors,
who have given false direction, or no
direction, and the child has remained
ill. It would appear as though the
hard part is over, now that there is a
diagnosis and treatment plan.
By the time they have found this
doctor, the parents usually know
enough about Lyme to realize that, at
this stage, it will not be a quick fix.
Treatment is likely to take many
months, sometimes longer. The
medical decisions, the most important ones, have begun, but for the
parents, the decisions are far from
over. This complex, poorly understood illness produces other dilemmas for parents. It is important that
the Lyme-literate community
(physicians, psychotherapists,
educators, nurses, support group and
task force leaders) recognize these
dilemmas, and provide support for
the parents of these young Lyme
patients and their families.
After the child is diagnosed by a
Lyme-literate physician, his parents
come to realize how little accurate
information on Lyme disease is out
in the community. They often
immerse themselves in the literature,
particularly some of the excellent
websites, and come to a basic
understanding regarding what their
Page 16
child is going through, and are ready
to provide support and advocacy.
This can lead to a sense of isolation
for parents, when they realize how
little is known in the general
community about Lyme, and some
dilemmas surface.
In this article, I’d like to address
three areas in which parent dilemmas
are common: 1) a family’s primary
support group, 2) the child’s moods
and behaviors, and 3) the child’s
school.
Dilemma #1 – Dealing with primary support group (extended
family, close friends)
We know the complexities of
Lyme disease and coinfections.
Patients don’t necessary “look sick”,
symptoms come and go, moving
from one part of the body to another,
the intensity of symptoms can be
extreme or subtle. It is therefore
difficult for those who have not had
previous experience with this illness
to understand and appreciate what is
going on. Lack of understanding, and
judgmental remarks on the part of
family members and friends often
lead parents to question how much
contact they can or should have with
those close to them. This is a heartwrenching dilemma for many.
It is important for parents to read
widely and deeply regarding the
illness, and to have simple materials
available (like the ABCs of Lyme,
carefully selected Lyme Times
articles, and “The Basics”) for those
close to them. If local cable TV
stations show the Lyme videos,
family members should view them,
and educate themselves. Family
members need to be encouraged to
respect boundaries with their loved
ones, providing support and not
criticism, even if they don’t really
understand what the issues are that
this child and his family are facing.
Families of children with Lyme
have a lot to deal with. Support from
those close to them, giving encouragement and in some cases, concrete
help, can eliminate the isolation that
the family might feel, and ease the
burden. How sad it is when a family
of a child who is ill needs to distance
themselves from loved ones because
of a lack of understanding and
acceptance.
Dilemma #2 – Dealing with the
child’s moods and behaviors
Where children with Lyme are
concerned, behaviors may not simply
be choices a child makes. The
behaviors may be symptoms of the
illness, normal flares of the symptoms induced by the medications, or
side effects of the medication itself.
Parents struggle with the questions
regarding accountability of a child
for his behaviors.
Lyme disables many children, but
parents certainly do not want to
further disable their child by not
having appropriate expectations of
him, or by denying him the natural
and logical consequences of his
actions. Herein lies the dilemma.
For example, if a child has a rage
outburst, to what extent is it under
the control of the child? What
response should parents have? What
messages do they give their child?
Whether or not the child is ill,
the message is that the outburst is not
acceptable. If the child is not ill, the
child has more responsibility to
change the behavior on his own.
With the child whose Lyme disease
might be a factor, there is more of a
Spring 2004
Publication of the California Lyme Disease Association
need to focus on the reasons for the
behavior, and environmental changes
that might need to be made while the
child is ill. Depending on the child’s
age, the parent can encourage the
child to become more aware of how
he is feeling, and identify the triggers
of the behaviors, in order to prevent
the reactions.
My co-therapist and I have
developed a “two-track” approach, in
working with children with Lyme.
We suggest that parents keep in
mind two ideas, or two tracks, that
need to be considered simultaneously
– 1) the child is ill, and negative
behaviors might be a part of the
illness, and 2) the child needs to be
encouraged and directed to behave
and function at an age-appropriate
level.
Here’s an example of a response
that serves both tracks. A child with
neuropsychiatric Lyme disease has a
friend over, and has a major outburst
in front of the friend. If the parent
knew that the child’s behavior was
willful and under the control of the
child, the parent might simply send
the guest home, and send the child to
her room, with the clear message that
the behaviors are not tolerated,
without delving into it any further. If
the child has Lyme, however,
particularly with diagnostics
supported by neuropsychological
testing and/or a brain SPECT scan,
there’s a strong likelihood that the
outburst, or some aspect of it, was
not under the child’s control. The
dilemma for the parent then is,
“How do I know whether my child
had control, or whether it was part
of the illness? What message do I
give her, and what actions do I
take, as a result of the outburst?”
A major problem is that the
parents cannot really know to what
extent the child has control.
However they should not presume
that the child had complete control.
So this dilemma calls for some
deeper thought on the part of the
parents than would be required if
the child were not ill. However, the
Number 36
behavior still calls for a parental
response.
One option for the parent is to
address both children, saying, “Susie
is not having a good day. It’s best if
she doesn’t have company right now.
Sometimes Lyme disease causes kids
to behave this way.” This is protective of the child, and of her relationship with her friend. The parent is
not blaming the child, but she is also
not allowing the situation to get
worse, by eliinating further contact
between the children that day. She
then takes the friend home. This is
the logical consequence of the child’s
behavior.
A talk with Susie after her friend
leaves, might yield some information
about what happened before Susie
had the outburst, “The TV was so
loud, that it made me feel jittery,”
etc. Teaching Susie, even at a young
age, to make connections between
her behaviors and precursors to it
might help her to gain control, by
removing stimuli or circumstances
that lead to outbursts before they
happen. Parents could then set
guidelines for when a friend comes
over, and which friends are good
company, while their child has this
set of symptoms.
Whether or not the child is ill,
the message is that the outburst is not
acceptable, but in the case of the
child who is not ill, the child has
more responsibility to change the
behavior on her own. With the child
whose Lyme disease might be a
factor, there may be more of a need
to focus on the reasons for the
behavior, and environmental changes
that might need to be made while the
child is ill.
Dilemma #3 – Dealing with the
school
The school can present an array
of issues for the parents of a child
with serious Lyme disease symptoms,
depending on how Lyme-literate or
Lyme-open the school administrators, teachers, and other school
professionals are. The degree of
support varies from school to school,
and from district to district, and, at
worst, can be a nightmarish experience for parents.
The best situation exists when the
school believes the parents and
doctor, providing supports to meet
the child’s changing needs (as I
discussed in the “Time for Lyme”
video). In this situation, the child
feels safe and protected, yet challenged in school, and one source of
potential stress is removed from the
parents.
Even in this situation, there are
dilemmas for the parents and
doctor. These include: determining
when the child’s workload can be
increased, when he can return to
school if he has been on homebound
instruction, when to go from partday to full day – these are judgement calls that may be difficult to
make.
When a school is supportive,
these judgement calls are, however,
much easier. The school becomes a
part of the team that adjusts
supports at every step of the way. If
the system is fluid, and the child is
given an academic load that meets
his abilities at a given point in time,
there’s less of a problem for the
Page 17
the Lyme Times
parents and child. If he is welcomed
back to school when his parents and
doctor determine that he is ready,
with the understanding that if his
symptoms get worse, he will be out
again, it creates far less of a dilemma
for the parents.
However, if the system is rigid
and once the child is back, the
administrators says he’d better
remain at school, it’s harder for the
parents to make the decision to allow
him to return to school, or to move
up from part-day to full-day. Parents
are torn between what they know
would be better for their child’s
health, and their not wanting to
make waves at a school that is not a
supportive environment for children
with Lyme. They fear that, if they
fight the system too hard, their child
will harrassed and judged, and that
the attitudes of staff will make their
child very uncomfortable in the
school environment. If the school is
rigid, the parent might therefore be
inclined to ask the child to “tough it
out”. At times, this results in
children relapsing, under the
pressure of a school day that’s too
long or too rigorous.
An important question we need to
ask is, “Why is the school not being
supportive?” They may simply lack
information. The parents and Lyme
support community can provide
information, in a congenial way, to
help the school understand and
appreciate the serious nature of this
illness, as well as the specifics of
how it effects this child. Some
schools are open to in-service
training by Lyme-literate educators,
doctors, psychotherapists. Educators
who participate in this training can
pass information on to their colleagues. [Note: In New Jersey, Lyme
disease education is mandated, for
both students and teachers. Other
states should follow New Jersey’s
lead, and pass similar legislation.
In some cases, Lyme disease
education has been offered, or
resources have been provided to the
school, yet administrators or teachers
Page 18
have refused to believe the parents or
the materials and have made determinations or taken actions that are
counterproductive. The Lyme
community needs to build resources
that will back parents who are
dealing with these schools. Perhaps
there needs to be a network of Lymeliterate parent advocates who attend
school meetings with parents, so that
they don’t have to participate in
these often-intimidating meetings
alone.
Suggested
resources:
These parenting dilemmas
highlight the importance of having
community resources and support for
parents of children who are seriously
impacted by Lyme disease. Although
Lyme disease is a medical illness,
there is far more to this illness than
we find in medical literature and
discussion.
ABCs of Lyme – available through the LDA
Time for Lyme video – (see order form on
page 52)
A Controlled Study of Cognitive Deficits in
Children With Chronic Lyme Disease –
Felice Tager, et al
The Basics - Lyme Disease Association of
Southeastern PA
Also see lymetimes.org for articles in back
iissues
The author practices at Family
Connections Center for Counseling
inWappingers Falls, NY.
New Jersey Law
Public Law 18A: 35-5.1 (1992) The Commisioner of Education, in
consultation with the Commissioner of Health, shall develop curriculum
guidelines for the teaching of information on the prevention of Lyme
disease within the public school health curriculum. The guidelines shall
emphasize disease prevention and sensitvity for victims of the disease.
The Commissioner of Education shall periodically review and update the
guidelines to insure that the curriculum reflects the most current information available.
Public Law 18A: 35-5.3 (1992) The Commisioner of Education, in
consultation with the Commissioner of Health, shall also provide
curriculum guidelines for the training of all teachers who instruct students with Lyme disease which emphasizes the special needs and
problems of students with the disease, in order to provide information
about how best to teach those students. Each school district shall
annually provide training to all teachers who instruct students with Lyme
disease, based upon the guidelines.
*
*
*
This law was passed through the efforts of the national Lyme Disease
Association (LDA), formerly the Lyme Disease Association of New
Jersey. LDA conducts regular inservice training workshops for teachers
in compliance with this legislation.
Spring 2004
Publication of the California Lyme Disease Association
Patient Story
A story for children of all ages
- with a good ending
by Terri Reiser
This is a story about a mother and her daughter who fought against Lyme
disease and were able to claim a victory. We live on Cape Cod and struggled
for years to find answers and help. Along the way, we met the usual obstacles; doctors unable or unwilling to diagnose and treat us, who chose
ignorance over enlightenment, a few whose behavior bordered on abusive,
most who turned to the “establishment” for safety instead of truth. It is a
story of great losses, financial, physical and emotional and time that will
never be reclaimed. It is also a story of great hope and healing, of a brave
doctor, unwavering in his confidence that cure would come.
I have written this story because it is true and it has a good ending. I
wanted to write something that would validate what children with Lyme and
their families go through. We were very lucky. My daughter has her life back,
and I have gained a measure of comfort. My daughter has also become one of
the fiercest 11-year-old advocates for Lyme disease that I know.
Here is our story. Words like “spinal tap” and “tick--borne diseases”
have no place in a fairy tale but they are part of this is a very scary story. I
hope you all will enjoy it and derive some hope from it, the best gift of all.
For Jodi
Once upon a time in Lyme La La
Land, there lived a woman who had
a few “tick-borne” diseases. She was
married and wanted to have a baby.
So she wished and hoped and prayed
and tried and tried to have a child.
For some reason, the babies all went
to live with God and waited for her
up in heaven. Her doctor could not
find any problem so the couple kept
wishing and hoping for a baby, and
one day...
....She found that she was going
to get her wish. This time the doctor
was very careful and after listening to
her story, told her to stay in bed for a
long time and had her take special
medicines. The woman was very sick
for most of the pregnancy, but she
thought that it was normal to be so
tired and weak while a new life was
growing inside of her. She ate
spinach each day to be strong like
Popeye. She took her medicine and
vitamins, but still felt pretty bad. One
day, nine months later, her daughter
Number 36
was born. There was joy throughout
the land! Here was her child!
Soon after her daughter’s birth,
however, the mother was faced with
a decision. Six serious looking
doctors in long white coats surrounded her hospital bed. It seemed
that her newborn daughter was in
great danger. She was very sick, she
had a fever, and the doctors wanted
to look for some guys called “Men in
Gitis.” She did not know who those
men were but she thought they ought
to be found. They wanted permission
to tap her baby’s spine. The mother
was very afraid for her baby.
So she gave permission and
waited, so afraid that after all these
years she would have to say goodbye
to another child. Finally the news
came that although they tapped on
her baby’s spine, they did not find
any of those funny men. But they
were convinced she had a very
serious infection and had to give the
baby strong antibiotics for many
days.
When they left the hospital, all
seemed fine. The baby girl grew and
was happy. She had lots of earaches
and high fevers that would come very
suddenly and make her face bright
red. The doctors would always give
her more antibiotics. When the baby
grew into a toddler, she loved to run
around outside and play. She still
looked happy and healthy. Two years
in a row, she had to see her doctor
again as she had a tick in the nape of
her neck. It looked funny, you could
only see the very end of it, and the
doctor had to use special tools to get
it out. Then he gave her more
medicine to take.
By the time the girl was 5 years
old, her mommy was becoming very
sick. She had not felt well for several
years, but thought it was a widely
known illness called “Just Stress.”
One day her mommy took a hot pan
out of the oven and told her daughter
After 4 years of
treatment, 11-year
old Mimi was free
of symptoms of
congenital Lyme
disease and
ehrlichiosis. A
concussion set off
another round of
symptoms and she
is back on
treatment and
recovering - again.
Page 19
the Lyme Times
not to touch it. It was very hot. Then
she realized that she had taken the
pan out with her bare hand, and had
got a bad burn. She could see it but
she did not feel it. There were lots of
other problems which made her think
that she probably was very sick. She
had been tested many times for
“Lyme” disease,” but all the tests
were negative. Someone named
ELISA did them. Finally, her doctor
sent her for a better test with a
different doctor, and she found out
she was very, very sick with that
Lyme disease. She was told she
would get better in a year or so if she
took her medicine.
knees ached and her feet hurt. She
could not run and she did not want to
play with her friends, even on the
weekends.
Another doctor said that she did
not have Lyme disease. How could he
tell by not even coming in the room
or looking at her tests? He must have
had very special powers. She
wondered if he was a wizard.
During one visit to yet another
doctor, the mother mentioned the
words Lyme disease and the doctor
got up and walked right out of the
During this time, the toddler
grew to a child, and was able to tell
her mom that she had pain in her
head and eyes, and didn’t like
sunlight, and didn’t want lights on
the tree at Christmas. Her muscles
and her neck hurt and she was very
tired most of the time. The mom
wondered if her daughter had
Lyme disease also, so she had her
tested. Guess what! She had it
too! Mother and daughter were
just alike! SICK. Very sick.
So they both took
medicine. The daughter did
not get better, in fact she
was getting worse. By the
time first grade started,
she needed help, such as a special
bus to get to school. Sometimes she
didn’t spend all day at school. She
needed lots of visits to the nurse,
time to rest and take her medicine.
She didn’t go to recess for a whole
year! The school was very nice about
it but the girl was sad that she was
different. Some of her friends were
not so friendly anymore, but others
were. She wondered why and thought
she somehow frightened them. But
she was too sick to worry about it
much.
Then the mother got worried that
her daughter was not going to get
better at all. She took her daughter to
see many different doctors. One said
she was “deep pressed.” But what
about her fevers and sore throat? Her
Page 20
room with a huff and a puff and blew
them off . He did not even look at her
sore ears or lungs that hurt. Maybe
he was a wolf in doctor’s clothing.
Finally, a doctor wanted to send
her to the hospital for some horrible
tests. “More tests that showed
nothing was wrong?” thought the
mommy. All the while the little girl
was getting worse. Fear blew down
the mommy’s spine like a cold wind,
because by this time she knew she
was in a Fantasy Land of Medicine
where no one would get her daughter
well, because no one wanted to face
the truth. Why was the truth such a
scary monster to these doctors? Why
didn’t they believe her? She knew
she had to get to The Land of Reality
which lay in the Kingdom of Lyme
Doctors. She knew that when she got
there she would find the best laboratories and tests, a correct diagnosis,
the right treatment and a fearless
doctor..but boy were they tired. What
a long trip, and with all that money
they had spent, they could have been
having some serious fun. It seemed a
long way to go just to get rid of some
tick germs. The mother knew that
she had to be strong, even though she
wasn’t feeling so great either. She
had to get her daughter some real
help.
So she took her to a doctor in
another town and in a different state.
The doctor was a big tall very gentle
man who barely fit into his shiny
bright armor. He took care of kids
with Lyme disease. His name was Dr.
Jones, and he is King of the Land of
Kids with Lyme, in the county of Just
What the Doctor Ordered. Everyone
loves him. Sabra, the Princess of
Venipuncture, used her magic
needles to draw lots of lovely
blood out of the little girl’s arm,
and it didn’t even hurt! In fact
the little girl watched her,
fascinated by tube after tube
being filled. They sent all of
her fabulous blood to a
laboratory in Florida. It was
there that the real wizards
saw exactly what was in
t h a t
blood, by way of tick
germs. They looked carefully and
hard, they knew how important it
was to find what was in there. They
found some Lyme germs and
someone called “Earl L. Ickeeah.”
Then the doctor could give her the
right medicines which would make
her better. It would take some time,
but it was worth it.
The mommy breathed a great
sigh of relief that was heard all the
way from New Haven to Boston.
The doctor also believed that the
mother had Lyme disease for many
years, even while she was growing
the baby inside her. That is how the
little girl had first got the tick germs!
Then there were those two awful
nasty hungry ticks that had been
Spring 2004
Publication of the California Lyme Disease Association
scraped out of her head. They
probably made her get more germs.
He told the mother not to worry, and
gave her medicine for her daughter.
The little girl started to get better
right away. She took medicine for
three more years.
Then, when she was elevenyears-old, the doctor told them some
wonderful news. The little girl was
all better. “She does not have any
more Lyme in her body” he said. The
mother could hardly believe what she
was hearing, so Dr. Jones showed her
more pictures of more blood cells
that the lab looked at from the little
girl, and they were all normal and
healthy! Her mother started to cry
tears of joy and almost knocked Dr.
Jones out of his chair with a big hug!
On the way home to Lyme La La
Land, the girl called all of her friends
and invited them to a big party that
was being planned to celebrate her
getting well. She had won a big
battle, it had taken a long time, and
there were many bad guys trying to
fight them, but they beat them all.
She was free of the nasty Lyme bugs,
and she is now living a worry-free
life.
Well, all except when would her
mom let her wear make-up?
Patient Support
Sauna Treatment Program
improves serious symptoms
by Lorraine Johnson
At the time, I was taking a lot of
drugs to control my depression:
Provigil for energy, Armor Thyroid
for energy, Klonopin for anxiety and
sleep, and Neurontin as a mood
stabilizer. I started the 30-day detox
program on December 26, 2002. The
person who ran the detox center
(Clearsprings Health Center in
Arkansas) required that I be off all
medication while on the program. He
was willing to wean me off of them
over the first week of the program,
but having gone through withdrawal
from these drugs before, I elected to
step down my doses over a onemonth period and arrive at the clinic
clean.
The program was based on the
Ron Hubbard protocol, which
structured the day as follows:
9:00 am - Breakfast
9:30 am - Niacin (and other
vitamins) sufficient to flush (started
at 100 mg/ ended at 3500 mg)
10:00 am - 30 minutes of vigorous exercise (trampoline, walking)
In April 2002, I was diagnosed
with Lyme disease and, subsequently
was diagnosed with Bartonella,
Babesia and Mycoplasma fermentins
coinfections. For 6 years prior to my
Lyme diagnosis, I was diagnosed
with major depression. It was pretty
clear that my depression wasn’t the
usual type as I was never suicidal,
didn’t lose weight, didn’t have sleep
impairment and so forth. My
psychopharmacologist at the time
tried me on 51 different drug trials to
combat the depression, but nothing
worked. Ultimately, I insisted on
doing some physical tests for my
condition and the Lyme was diagnosed.
restaurant was not possible. Other
symptoms that I had during this time
included depression, cold intolerance, fatigue, paresthesia, muscle
cramps, arthralgias, and cognitive
impairment. I was also lying down a
good portion of the day and had
started losing weight at an alarming
rate (16 lbs in 2 months). Right or
wrong, I was convinced that I was
slowly dying. Nothing seemed to be
able to stop the progress of my
illness. Each week I became less able
to participate in my family. I had quit
working as an attorney and COO six
years previously, but now even the
simple things, like driving the kids to
school, were slipping away.
After the diagnosis in April 2002,
I took oral antibiotics as well as antimalarial medications for my condition. I proceeded to get sicker and
sicker (this may have been a Herxheimer reaction, but it lasted for
months). I developed sound sensitivity, which became unbearable for me
so that, for example, eating in a
Number 36
By early November, my sound
sensitivity had become excruciating
(for example, the sound of a fork
touching a plate could cause me to
burst into tears). I decided to stop all
medications, and, with my doctor’s
strong encouragement, enrolled in a
detox program that consisted
primarily of intensive sauna sessions.
10:30 am - Sauna for 30 minutes;
followed by 5-minute break; followed
by 30 minutes sauna, and so forth for
up to 4 hours.
The program also included
freshly juiced vegetables and a
protein shake. The heat used is low
temperature. Most commercial
saunas are set at 175-200 degrees.
Low temperature sauna is around
125 degrees Fahrenheit.
The first day, I spent 2 hours in
Page 21
the Lyme Times
the sauna. Although I felt fine during
the sauna and for 30 minutes after it,
I then had to lie down and, unfortunately became very ill with vomiting
and diarrhea as well as sweating and
chills throughout the night. The next
day, I was taken into town for an IV
of Meyer’s solution. After a day off, I
resumed the sauna treatment with
just 1 hour to begin with and worked
my way up to 2 ½ hours over the first
week, and ultimately up to the
program goal of 4 hours a day in the
sauna.
antibiotics), I decided to go back on
antibiotics—this time intravenous
Rocephin. To avoid infection, I
changed the PICC line dressing
immediately after the sauna each
day. (Actually, it was sauna, shower
(with plastic baggies covering the
PICC line for the shower only), then
change dressing.) Even though sweat
is sterile, any bacteria under the
dressing will multiply in the presence
of moisture. After nine months on
Rocephin, I am now on orals. I
continue with the sauna. It is the one
constant.
I felt pretty sick most of my time
in the program, but forced myself to
The way a sauna works is by
continue it for the full
30 days. I did notice
that my energy picked
up a little towards the
end of my stay and that
Symptom
Before
my appetite returned. I
also noticed that my
Depression
5
arthralgia was gone and
Shortness of Breath
5
that my paresthesia was
gone as well. Still, I
Carpal Tunnel
5
remained somewhat
Numbness/Tingling
5
skeptical of the treatSound Sensitivity
5
ment. After I was
home, however, it was
Insomnia (going to sleep) 5
immediately apparent
Insomnia (staying asleep) 4
to me and to my family
that I had improved.
Chills
5
For one thing, the
Fatigue
5
depression was gone. It
Cognitive Impairment
5
seems a small thing
until you consider that I
had been diagnosed
with depression for 6
years and that no medication had
causing physiological changes. The
been able to help with this depresbody temperature is increased,
sion. My energy had also improved
muscles are relaxed, the blood
dramatically, although I did not feel
circulation is increased (which helps
that I had recovered from my fatigue
distribute antibiotics), heat shock
fully.
proteins are released (which are
believed to stimulate the immune
Once home, I started spending 2
hours a day 5 days a week in a sauna. system and repair damaged cells),
and sweat is produced (which helps
Over the next four months, I contindetoxify the body by eliminating
ued to improve. Ultimately, my
heavy metals, pesticides and other
sound sensitivity went away. I
toxins, including immune complexes
noticed that I still had some signififrom the body.) I know that the sauna
cant fatigue and cognitive issues
improves my mood and energy level.
(even though the fatigue had imIt is purported to block substance P,
proved perhaps 60%). I have now
been doing the sauna for a year and 3 which is associated with pain.
months. Last May (after 5 months off Pharmaceutical forms of substance P
blockers are being explored as antidepressants. Heat is also said to
increase the effectiveness of antibiotics against B. burgdorferi. For
instance, the in vitro susceptibility of
all strains of B. burgdorferi to
ceftriaxone and penicillin is increased 16-fold by an elevation of
temperature from 98.6 degrees to
100.4 degrees Fahrenheit. (Reisinger
E, Antibiotics and increased temperature against Borrelia burgdorferi
in vitro. Scand J Infect Dis.
1996;28(2):155-7).
I have kept a symptom log since I
was diagnosed with Lyme. The
symptoms are rated on a
scale of 1 to 5, with 5
being the worst. The
chart on the left reflects
my most troubling
After
symptoms before and
after the intensive one
1
month sauna treatment
2
program.
After one month of treatment
Page 22
2
1
1
1
2
2
3
3
I think the sauna
improved my health
dramatically. I remained
skeptical of the treatment
during the 30-day
intensive detox. It was
not easy finding the time
and place to continue my
sauna routine when I
returned home. I negotiated monthly rates with
day spas (where I could
have some privacy and
control the temperature).
The cost was between $50 and $100
a month. Since then, I have built a
sauna in my own house. I have been
very committed to this part of my
program because I feel it has had a
great impact on my recovery. I am
fully functional in the family again
and am looking forward to regaining
my professional capacity. Though I
am not quite there, I expect to
continue improving and I have begun
taking on small work projects
I do not believe that sauna is
curative on its own. I was off all
antibiotics for 5 months and used the
sauna. At the end of the 5 months, it
Spring 2004
Publication of the California Lyme Disease Association
was clear that my symptoms were
progressing and I went back on
antibiotics. However, I do believe
that it is a great compliment to
antibiotic therapy. I would highly
recommend a sauna detox program
to anyone with a chronic illness.
A good source for more information is the “Manual of Sauna
Therapy” by Dr. Lawrence Wilson,
available from www.drlwilson.com
or call 928-445-7690.
The author is a director of
CALDA and lives in Los Angeles.
Thyroid test relying on TSH
can be deceptive
by Howard Posner, MD, and Daniel Kinderlehrer, MD
Some physicians have observed a
relationship between Lyme and
increased incidence of thyroid
problems. The problem with standard
thyroid testing is that most physicians rely on T-4/TSH levels which
can be normal even in the face of
severe hypothyroidism. TSH seems to
be of greatest value only in early
hypothyroidism. Recent studies have
shown that free thyroxine levels are
more useful in diagnosing hypothyroidism than other lab tests. Some
patients with only modest changes in
TSH may present with severe clinical
signs of tissue hypothyroidism.
hypothyroidism. Therefore, the
biological effects of thyroid hormones at the peripheral tissues and
not TSH concentrations reflect the
clinical severity of hypothyroidism.
A judicious initiation of thyroxine
treatment should be guided by
clinical and metabolic presentation
and thyroid hormone concentrations
In a recently published article, the
researcher states, “TSH is a poor
measure for estimating the clinical
and metabolic severity of primary
overt thyroid failure. This is in sharp
contrast to the high diagnostic
accuracy of TSH measurement for
early diagnosis of hypothyroidism.
We found no correlations between
the different parameters of target
tissues and serum TSH. Our findings
are in accordance with a cross
sectional study showing only a
modest correlation between TSH and
the percentage of positive hypothyroid symptoms and data showing
discordant responses between the
pituitary and peripheral target tissues
in patients treated with L-triiodothyronine. We assume that secretion of
TSH is driven by maximal stimulation, with no further increase
occurring with greater severity of
Several years ago Robert I.
Rudolph, MD, wrote a tongue-incheek article to the British Medical
Journal entitled, “How to make a
really good doctor.”
Number 36
(free thyroxine) and not by serum
TSH concentration.” (BMJ Feb. 8,
2003)
Inflammatory illness is associated
with increased cortisol and decreased
DHEA production (until the adrenals
are exhausted, and cortisol production also declines). This leads to
decreased conversion of T4 to T3 and
increased conversion of T4 to reverse
T3, which is not active. T4 itself is
not particularly active, the lion’s
share being done by T3, so the
decreased conversion results in a
functionally hypoactive state, despite
normal TSH levels. T3 is usually low
or low normal. Many patients put on
sustained release T3 q 12 hours
(from a compounding pharmacy)
experience good results. Alternatively, some do well with a combination of T4 and T3, such as Armour
thyroid or Thyrolar.
The authors are members of
ILADS.
How to make a good doctor
by Jon Strong
“Aside from the obvious ones of a
fine medical school, great teachers,
and lots of hands on clinical experience,” he wrote, “I think the very
best way to produce a good (read
sympathetic and humane) doctor is to
force the student-doctor or Resident
to become a patient.” He goes on to
list all the procedures a doctor should
undergo - including “hav[ing] many
tubes of blood drawn over a few days
by poor phlebotomists, have an NG
tube inserted once or twice, undergo
a thorough sigmoidoscopy, barium
enema and bowel prep, and perhaps
even be made to spend a night or two
confined to a hospital bed, plugged
into an IV, and then be subjected to
harried and uncaring staff physicians
and/or nurses while bedridden.” He
concludes by betting that this method
“will produce far more empathetic,
sympathetic, and good doctors then
multiple lectures on sensitivity amd
humanism by some medical academic, ethics professor, or member of
the cloth.”
Page 23
the Lyme Times
My recent experience with a
lumbar puncture had me thinking
along these lines once again as well.
After the neurologist tried for 1/2
hour, without success, to insert the
needle in my spine, I had this wild
fantasy to subject him to the same
treatment. What reinforced this for
me was the followup: I was sent to
Radiology, where the whole procedure was quick, easy and far less
traumatic, making it clear that my
earlier experience had been totally
unnecessary.
My 8-year-old son had an
experience a few months back in
which doctors thought he had
appendicitis. He wound up in the ER,
where they tried to put an IV needle
in his arm. They succeeded, but only
on the third nurse after the 5th try
and after trying for 45 minutes.
Needless to say, my son was traumatized. I kept asking why they couldn't
use something like EMLA
(prilocaine and lidocaine) cream or
TAC (tetracaine, adrenalin and
cocaine) topical liquid, and I was
told that it wasn't “hospital policy.”
We eventually learned that the
feared appendicitis was really
meseneric adenitis (abdominal
infection), and after the subjective
symptoms were cleared up he was
scheduled for a followup CAT scan
to verify that the infection was gone.
This time, I stood in the doctor's
office and refused to budge until they
handed me a prescription for EMLA.
An hour before the CAT scan, I put
the cream on both of his arms in the
areas that were potential targets for
an IV and covered both with a piece
of Tegaderm. By the time we got to
the Radiology department, both spots
were completely numb, and he
experienced no pain whatsoever
when the needle was inserted this
time. The nurses, radiologist and
technicians were actually surprised
and greatly impressed. I felt as if I
were showing off a modern compass
to stunned New Guinea aborigines.
It truly seems that there is so little
empathy for the patient, and so little
Page 24
concern that they might experience
either pain, inconvenience or
humiliation that is totally unnecessary and avoidable. The idea for a
training program in patient empathy
that requires doctors to experience
the procedures to which they subject
patients is superb. The idea of
requiring annual refreshers make the
idea that much more delicious!
The author contributes regularly
to the Lyme Times.
Hearing illustrates range,
depth of peoples’ problems
continued from page 1
Photo courtesy LDA
L-R: Members of the CTLDC:
Time for Lyme co-president
Diane Blanchard, CLDC
Moderator Christopher Montes
of the Greater Hartford Lyme
Disease Support & Action
Group, and LDA president Pat
Smith supported the hearing.
in Lyme, Connecticut, in 1977. Since
then it has become the most commonly reported vector-borne disease
in the US. Connecticut has the
highest reported number of cases per
capita. In 2002 there were 4,631
cases of Lyme disease reported in the
state, but experts say that there may
be 10 times more that went unreported.
Patients claim that they have
difficulty being diagnosed and
treated because of the medical
controversy surrounding the disease,
particularly relating to the length of
antibiotic treatment. The Attorney
General and the Commissioner of the
Dept. of Health planned this all day
hearing to openly discuss issues and
exchange ideas concerning the
diagnosis, treatment and reporting of
Lyme disease.
Blumenthal said the hearing
aimed to address what he believes is
the overly narrow federal surveillance guidelines for the disease and
to correct the underreporting caused,
in part, by those guidelines.
“It’s a pernicious, insidious,
enormously destructive disease for
our families and our communities,”
he stated.
Last year the Health Department
eliminated mandatory lab reporting
of Lyme disease after funding from a
CDC grant ended. This could lower
reported cases of Lyme in CT by as
much as 80%, representatives of
patient groups claim, potentially
resulting in lost federal funds for
programs and adversely affecting the
ability of private charities to raise
money for Lyme disease research.
“Doctors don’t bother (reporting
it) because there’s too much red
tape,’’ said Karen Gaudian, one of
the founders of the new Ridgefield
Lyme Disease Task Force in an
interview with The News-Times. In
2002, she said, the state counted 323
Lyme disease cases in Ridgefield. Of
those, 278 came from lab reports and
Spring 2004
Publication of the California Lyme Disease Association
45 from doctors. Likewise, said
Maggie Shaw of the Newtown Task
Force, Newtown had 606 cases
reported to the state in 2001 and
2002. Of those, labs reported 584 and
doctors reported 22.
Blumenthal, acknowledging that
preventing the spread of the disease,
diagnosing and treatment are
important to ending the epidemic,
agreed. “We won’t know whether
we’re making progress if we’re not
counting the cases,” he said.
“If you count it, you not only
know how much of it there is, you
can tell where it is,” said Galvin. “If
you’re trying to convince people of
the magnitude, you need surveillance.”
Some Lyme patients and physicians feel that Lyme disease, especially the chronic, long-term variety,
is under-diagnosed and inadequately
treated by the short course of oral
antibiotics that is the current standard.
The patient panel, consisting of
10 past and present people with
Lyme disease shared their stories,
demonstrating repeatedly the
devastating effects the disease has
had on their lives, largely due to
misdiagnoses and inadequate
treatment. Many had been told their
symptoms were imagined or due to
stress.
Caroline Baisley, director of the
Greenwich Health Department, spoke
as a patient and described a catalog
of symptoms - from hives and
hearing loss to chest pain - which
were not relieved until she was
treated for Lyme. Jude Ann Jones of
Southport said she was told she had a
“case of the crazies” after years of
being ill with the disease.
Elise Brady-Moe of Newtown told
the hearing she unknowingly became
infected with Lyme. “I never saw the
tick and I did not have a bulls-eye
rash.” She was misdiagnosed with
Rheumatoid Arthritis because of
migrating joint pain. She sought a
second opinion and after going on
Number 36
antibiotics for seven months, she
thought she was cured. She and her
husband conceived a child only to
miscarry at 18 weeks. PCR testing
showed the fetus had died of Lyme
infection. The bacteria, still living in
her system, had passed into the
placenta and killed the infant. She
went on another lengthy course of
antibiotics, conceived again and
miscarried again. The fetus again
tested positive for the Lyme bacteria.
The effect of Lyme disease on
children is especially heartbreaking.
Josh Athenios, 12, of Farmington,
was diagnosed and treated for Lyme
An infectious disease
doctor told Josh his
symptoms were all in
his head [and] advised
him to tell his mom the
truth - that he was
making it up so he
didn’t have to go to
school.
disease. He was temporarily well
then relapsed. His pediatrician said it
couldn’t be Lyme because he had
been treated with 3 weeks of antibiotics, which has been promoted as
“adequate” treatment. He was told he
just had “growing pains,” ignoring
the severe pain in his joints, his
constant fatigue, headaches and the
hair falling out of his head in
clumps.
“My classmates asked me if I had
cancer,” Josh said. When his Lyme
tests came back positive he was sent
to a rheumatologist who diagnosed
him with rheumatoid arthritis and
wanted to do surgery. He then went
to an infectious disease doctor who
told him that his symptoms were all
in his head. He advised Josh to tell
his mom the truth, that he was
making it up so he didn’t have to go
to school.
Josh was ultimately diagnosed
and successfully treated for Lyme
disease by New Haven, Connecticut
pediatrician Charles Ray Jones, who
has treated over 6000 children from
all around the world. Josh recovered
and has been off of medication for
two years.
Mary Anne Foley, of Wilton, said
all members of her family have been
diagnosed with Lyme at one time.
Three members have had devastating
impact. Her oldest daughter missed
most of high school due to illness.
The Senior counselor from her
school said 3% of the school’s
student body have accommodations
(504/IEP) due to the lingering effects
of Lyme. “The school budget is out of
control due to Special Ed needs,” she
said.
Jennifer Reid of Ridgefield and
her 3 daughters have Lyme. In each
instance, the disease progressed to a
high level of cognitive and neurological damage before a diagnosis
was made. “We’ve spent five years
not only fighting this disease, but
also our insurance company,” Reid
said at the hearing. Her daughter
Katie, 18, is on medical leave from
the University of Connecticut due to
Lyme disease. Katie worked hard to
maintain her straight A’s, in spite of
her illness, but ultimately the disease
won. She had to leave just before
finals and feels terrible that her
parents lost the money they paid for
her tuition. Katie says she wants to
move somewhere far away from
Connecticut. “I want to go somewhere where I can get better and
never get this again. I want to be
able to pet animals, go for a hike, go
camping, lay down in fresh grass and
not get sick from it. I want to be able
to swim without a rubber bandage
over my arm. I want my life back.”
Lyme disease is an alienating and
lonely disease for children. School’s
policies, prohibiting participation in
extracurricular activities when not in
Page 25
the Lyme Times
research is completed.”
Patient panel
prepares to
testify at
hearing.
Photo courtesy LDA
often the telltale bull’s-eye rash
doesn’t appear. Studies show that
patients who are not treated early are
more likely to have chronic cognitive
problems. In endemic areas doctors
should check for Borrelia burgdorferi when a patient presents with
sudden physical or neurological
problems.
Fallon warns that children are
suffering in the schools systems.
Children may appear to be inattentive, unmotivated, disorganized, and
confused. They may look good on
bad days, and may function on some
days but not on others. Children need
longer amounts of sleep and thus
can’t make early classes on time.
Normal sound environments can
be painful, disorienting and threatening. Schools need to create flexible
programs for students missing class
due to illness. He recommended not
giving failing grades just because a
child is in on some days but not
others. A state-wide mandatory
annual educational update on Lyme
disease should be considered for all
teachers, principals and special
education coordinators in Connecticut, he suggested.
“The practice of clinical medicine
remains an art in which medical care
is individualized for each patient,”
Fallon concluded. “In the face of
insufficient medical knowledge, an
open mind is needed. Doctors need
freedom to practice as they see fit,
and definitive practice guidelines
should not be made until far more
Page 26
school, are devastating for those
children who can’t attend school
regularly due to Lyme disease. Not
only do they have to endure the
devastating physical symptoms of the
disease but also the mental and
emotional anguish caused by isolation, loss of friends, loss of experiencing the activities and camaraderie
that attending school provides.
Cheryl Carotenuti from the
Connecticut Department of Education said that children with Lyme
disease may qualify for accommodations under section 504 of the
Rehabilitation Act or may be eligible
for Special Education under the
Individuals with Disabilities Education Act. If a student is referred for
Special Education or 504 the school
district is required to convene a
Planning and Placement Team (PPT)
to consider the request for the
evaluation. As a result of a recent
meeting with the LDA, Time for
Lyme, and the Committee for
Education Reform for Children with
Lyme Disease (CERCLD), the
Connecticut Department of Education will be distributing a packet of
information to school nurses this
spring.
Dr. Brian Fallon, of Columbia
University spoke on the neuropsychiatric aspects of Lyme and stresses
they may be more prominent than
rheumatologic ones. Differences in
symptoms, treatment and outcome
vary with Early Lyme vs. Late Lyme
vs. Chronic Lyme. He cautions that
the blood Tests are unreliable and
The audience, in appreciation,
gave him a standing ovation.
Dr. Amiram Katz, a neurologist
at Yale University, referred to Lyme
disease as “the Big Masquerader” of
the 21st Century, as syphilis was in
previous century. “It can attack any
organ system of the body or any part
of the nervous system,” he said.
[Ed. note: Lyme disease can
mimic a myriad of diseases presenting as Multiple sclerosis, ALS (Lou
Gehrig’s disease), chronic fatigue
syndrome, fibromyalgia, Alzheimer’s
and other debilitating conditions.]
Katz continued, “Every patient
diagnosed with Bell’s palsy in an
endemic area should be suspected to
have Lyme until proven otherwise.”
MRI (Magnetic Resonance Imaging)
cannot tell Multiple sclerosis from
Lyme. Epidemiologic studies are
needed to assess the prevalence of
MS in Lyme endemic areas.”
Voicing his concerns about the
role of Lyme in children’s development, Katz stated, “Any change in a
child’s behavior, school achievement,
mood or physical state deserves a
comprehensive organic workup.
Lyme should be part of this workup.
We should encourage epidemiologic
studies regarding the prevalence of
learning disabilities and psychiatric
disorders in children in our state vs.
other states.”
Other physicians, researchers and
policy-makers believe that chronic
Lyme is not widespread and they
worry that doctors who are too eager
to treat Lyme may be overloading
patients with unnecessary and
dangerous doses of antibiotics and
also ignoring other possible illnesses.
Dr. Lawrence Zemel, chief of
pediatric rheumatology at Connecticut Children’s Medical Center, said
that a small group of doctors is
diagnosing Lyme disease too often in
patients who test negative for Lyme
and have vague complaints of fatigue
and pain. He described one young
patient whose parents insisted that
Spring 2004
Publication of the California Lyme Disease Association
the child be treated for Lyme after
complaining of severe back and hip
pain. The antibiotics failed, Zemel
said, and he determined that the
child had leukemia.
Dr. Robert Levitz, assistant
director of the section of infectious
disease at Hartford Hospital, said that
he too had seen some patients
misdiagnosed with Lyme, but he also
faulted some of his colleagues. Levitz
said patients need to be thoroughly
worked up to get to the bottom of
their symptoms, whether it turns out
to be Lyme or not. He admitted
chronic Lyme exists but cautioned
that the symptoms overlap with other
diseases like mercury toxicity, yeast
overgrowth, B-12 deficiency, Hepatis
C. “This doesn’t mean there isn’t
such a thing as chronic Lyme
disease. I’ve seen it,” Levitz said.
“But the testing for Lyme disease
isn’t very good. We need to make it
better.”
Part of the problem with the
testing is that doctors are using the
results to diagnose Lyme even
though the Centers for Disease
Control state that Lyme disease is a
clinical diagnosis. The overly
conservative definition of the disease
developed by the CDC was for
collecting data on the illness, not for
diagnostic purposes. Dr. Paul Mead,
a medical epidemiologist with the
CDC, reassured those assembled that
the CDC surveillance case definition, as it is called, “is not a substitute for sound clinical judgment.”
Blumenthal made the point that
CDC guidelines are being used by
both physicians and insurance
companies for diagnostic purposes.
He also quoted from the Appropriations Act of 2002, signed by President Bush. The Appropriations
committee was “distressed in
learning of the widespread misuse of
the Lyme disease surveillance case
definition as a diagnostic standard as
well as the deciding factor in
insurance reimbursement” and they
wanted the CDC to “aggressively
pursue and correct the misuse of this
Number 36
definition.” Blumenthal asked if the
CDC had done anything to respond
to this, but Mead didn’t have an
answer. Mead is to report back to the
AG what exactly the CDC has done
in regards to the recommendation.
Post-Lyme is really just persistence
of the initial infection. Curative
therapies are needed but research is
not being done. The existence of
chronic Lyme is being denied against
overwhelming medical evidence.”
Ridgefield physician Dr. Steven
Phillips, who is president of the
International Lyme and Associated
Diseases Society (ILADS), made a
strong case for the persistence of
Lyme bacteria in patients who have
been treated. “Many patients will
Phillips’ organization, ILADS,
has just published new peer reviewed
guidelines for diagnosing and
treating Lyme disease to help
physicians combat the fastest
growing vector-borne disease in the
United States.
“In endemic areas
doctors should check
for Borrelia
burgdorferi when a
patient presents with
sudden physical or
neurological
problems.”
Brian Fallon, MD
relapse after antibiotic therapy. Some
call this post-Lyme syndrome or
post- Lyme fibromyalgia,” he said,
“others call [this] nonsense, and say
it’s just a continuation of the initial
active Lyme disease.”
His impressive slide show
consisting of two dozen peerreviewed journal articles that
demonstrated the persistence of
Lyme bacteria despite adequate
antibiotic therapy, many from
authors who publicly deny chronic
Lyme exists, brought thunderous
applause from the audience.
After talking about the inadequacy of current testing and
treatment protocols, he concluded,
“Chronic Lyme is caused by chronic
infection. Seronegative Lyme is
common. Longer treatment durations
are more effective than shorter,
although not necessarily curative.
Christopher Montes of the
Greater Hartford Lyme Disease
Support & Action Group and
spokesperson of the Connecticut
Lyme Disease Coalition (CLDC),
comprised of patient advocacy groups
from across the state, said that LD
and other tick-borne diseases are
pandemic in the state. He called for
medical schools to update their
criteria by paying attention to the
science of persistence, co- infections
and the required treatment thereof.
Patients on Medicare or Title19 as
well as HUSKY are unable to access
Lyme knowledgeable doctors because
they are not covered. They are turned
away by mainstream doctors for
treatment because LD is too “controversial”. Montes asked that the
office of Attorney General and the
DOH form a committee made up of
Lyme knowledgeable physicians,
State Agricultural testing stations
representatives, patients, lawmakers
and members of Advocacy groups to
further address the issues surrounding Lyme and other TBD’s.
The hearing was a successful first
step in the direction of addressing the
important issues facing Lyme
patients, not only in Connecticut, but
across our country.
A tape of the hearing may be
obtained by calling Kate Galvin at
(860) 240-8526. The author is a
Lyme patient who lives in Guilford,
Connecticut.
Page 27
the Lyme Times
Connecticut Coalition
promotes action steps to fight
epidemic
by Ellie Becker and Melissa Diamond
NEW BRITAIN, Conn - The
Connecticut Lyme Disease Coalition
(CLDC), an alliance of 11 patient
advocacy groups from across the
State, today announced it has
identified four primary action areas
based on a recent hearing before
Attorney General Richard
Blumenthal and Public Health
Commissioner Robert Galvin, MD on
issues related to Lyme disease. The
group, which was formed to increase
public awareness of Lyme diseaserelated issues and to help advocate
for solutions to the Lyme disease
epidemic in the region, said that,
based on testimony at the day-long
session, it will focus on initiatives to:
Create the first state budget line item
specifically directed toward funding
for lab reporting and increased statewide prevention programs; Educate
health care providers on the difference between CDC surveillance
criteria vs. diagnostic criteria; and
Re-instate laboratory reporting of
Lyme Disease in Connecticut. The
CLDC, which came together to bring
a unified voice to the hearings, also
hopes to be considered as a statewide
task force working in tandem with
health officials to expand the state’s
Lyme disease prevention activities
and create an effective Lyme program.
The hearing, which attracted overflow attendance, brought
together three separate panels, one
comprised of Lyme disease patients,
another of physicians and researchers
and a third of government and public
health officials. Each panel addressed the problems and controversies of diagnosing, treating and
preventing Lyme disease from its
particular perspective. Representatives of the Centers for Disease
Page 28
Control and the National Institutes of
Health participated, discussing how
Lyme disease is being addressed at
the national level and how that can
impact funding and reporting
work to bring to the attention of state
lawmakers charged with developing
the budget.
In addition, CDC representative
Paul Meade reported that the CDC
surveillance criteria should not be
used by physicians as diagnostic
criteria. The improper use of
surveillance criteria by physicians
has caused many individuals to
remain undiagnosed and untreated
according to the CLDC.
Lyme disease is known among
The Coalition will work with the Attorney
General, the Commissioner of Public Health
and other participants on four initiatives:
Budget, Physician Education, Laboratory
Reporting and Task Force
requirements at the state level.
“We applaud Attorney
General Blumenthal and Commissioner Galvin for creating the
opportunity to hear from such a
broad and diverse group of advocates
in the fight against Lyme disease,”
said Chris Montes, CLDC spokesperson.
CLDC representatives said that
they were surprised to learn that all
funding to date of Lyme disease
surveillance, reporting, and prevention efforts in Connecticut has come
from federal programs overseen by
the CDC and NIH, and that no
funding has come from the state
budget. While Connecticut, as one of
the most affected states in the nation,
has successfully competed for and
received a considerable number of
federal Lyme disease grants, federal
budgets are lower than in the past
and Connecticut may not be able to
rely on federal funding in the future.
This reality will require Connecticut
to assume responsibility for some
funding for Lyme disease initiatives;
an effort that the CLDC said it will
physicians who specialize in its
diagnosis and treatment for “hiding”
for periods of time and for mimicking numerous other illnesses, making
diagnosis particularly difficult,
according to the CLDC. These
characteristics underscore the need to
disseminate the information to the
physician community, an effort the
CLDC will champion.
Representatives of the Connecticut Department of Public Health, the
NIH and CDC told the hearing that,
in recent years, their focus has been
changing from tracking the spread
and growth of the Lyme disease
epidemic through surveillance and
reporting, to prevention strategies.
This focus change and budget issues,
according to the Connecticut Department of Public Health representative,
contributed to the Department’s
decision to discontinue mandatory
laboratory reporting of Lyme disease.
The consensus of the panels was
that the dropping of laboratory
reporting will lead to an artificial
drop in the number of Lyme disease
cases reported, since the labs have
Spring 2004
Publication of the California Lyme Disease Association
been reporting approximately 80% of
cases. Because of Connecticut’s
status as the state with the highest
per capita rate of infection from
Lyme disease, under-reporting here
can skew statistics nationwide.
Though the CDC representative
stated that surveillance numbers do
not equate with funding levels,
Attorney General Blumenthal stated
forcefully that if we do not continue
to report cases of Lyme disease, we
have no way of knowing whether or
not prevention efforts are successful
or if progress is being made against
Lyme disease.
toward that end.
Commissioner Galvin commented that the state is planning to
re-instate laboratory reporting when
improvements to the state’s information technology capabilities will
allow for more efficient electronic
reporting by labs. In addition, DPH
will encourage physician and
healthcare providers to report cases
of Lyme disease to the department.
The system for electronic laboratory
reporting which would be used to
collect infectious disease data
including Lyme disease case numbers
will begin implementation in 2005.
The CLDC will continue its efforts to
advocate for restoring lab reporting
as early as possible and will work
within the Lyme disease, public
health and government communities
• Newtown Lyme Disease Task
Force
The Connecticut Lyme Disease
Coalition (CLDC) includes the
following groups:
• City of New Britain Commission on Persons with Disabilities
• Committee for Education
Reform for Children with Lyme
Disease (CERCLD)
• Greater Hartford Lyme Disease
Support and Action Group
• Lyme Disease Association, Inc.
Middlesex County Lyme Disease
Task Force
• Tick-Related Illnesses SelfHelp Alliance (TRISHA)
• Time for Lyme, Inc., of
Greenwich
• Ridgefield Lyme Disease Task
Force
• Wilton Lyme Disease Support
Groups
• Woodbridge Lyme Disease
Support and Action Group
Ellie Becker may be contacted
at [email protected] and Melissa
Diamond may be contacted at
[email protected], or call 203-4548880
Photo courtesy LDA
Connecticut
Lyme
Disease
Coalition
members
and
Assistant
Attorney
General
Tom Ryan
share dinner
after the
hearing
Number 36
Pennsylvania
advocates
regroup
by Deborah S. Kliman, EdD
In January 2003, six people
joined together to form a new Lyme
information/support/education/
advocacy group. Five of the six
currently suffered from Lyme disease
and the remaining member had had a
bout with it two years previously. All
of the Board members were members
of ILADS. The mission of the
LDASEPA is as follows:
The LDASEPA, an affiliate of the
national Lyme Disease Association,
is an all-volunteer non-profit
organization aimed at improving the
lives of people suffering from Lyme
and other tick-borne diseases and
preventing new cases through
education, support, public information, research and partnership with
organizations with common goals.
Our meetings are held once a
month for two hours in a meeting
room provided to us rent-free by the
Kennett Square Friends. The format
is a support group for the first hour
and a speaker or informational
Lyme-related video followed by
discussion. Although we’ve advertised meetings in the local newspapers, on our web site
(www.lymepa.org), and in public
spaces such as post offices and
supermarkets, many of the attendees
hear about our meetings through
word of mouth. Some of our monthly
speakers have drawn as many as 50 –
60 people!
We hope to hold 1 or 2 meetings
a year which will feature a Lymeliterate physician of national reputation. We were lucky enough to have
Dr. Joseph Burrascano as our speaker
in May 2003 and his talk attracted
almost 650 people, not only from
southeastern PA, but from a wider
geographic area. In October 2003,
Dr. Bernard Raxlen was our guest.
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the Lyme Times
His talk was also very well received.
The most successful endeavor of
LDASEPA was publication and
distribution of the booklet Lyme
Disease and Associated Diseases:
The Basics, written by one of our
Board members, Doug Fearn. “The
Basics” is now in its third edition
and approximately 60,000 copies
have been distributed throughout the
U.S. and Canada by request from
support groups, physicians and
individuals.
Another service of LDASEPA is
operation of a Hot Line, staffing of
which rotates on a monthly basis
among Board members. The Hot
Line has fielded calls from almost
every state in the U.S. as well as
Canada. Besides basic information
about Lyme disease, callers ask
questions about treatment, doctors,
co-infections and prevention.
LDASEPA has been a labor
intensive but very rewarding effort.
We value and have benefited from
our affiliation with the LDA.
Feedback from the Lyme community
has been uniformly positive and
makes our efforts all worthwhile.
Like many grassroots organizations,
we need more volunteers to spread
the work around. Up to now our
income has come from in-kind
contributions from Board members, a
few gifts from area businesses,
contributions for “The Basics”, and
from attendees at the monthly
meetings. One of our major goals for
2004 is to obtain funding from
businesses and/or foundations which
will enable us to move ahead on
several projects including a local
population survey, a tick study in our
region and publication of more
“Basics.”
To get copies of “the Basics”
email [email protected] or call
610-388-7333. Donations to support
this project are greatly appreciated.
Send checks to LDASEPA, PO
Box 944, Chadds Ford, PA 19317
Ms. Kliman is the treasurer of
LDASEPA
Page 30
Left to right: Sarah Brady,
whose husband Jim
served as President
Regan's Press Secretary,
Tami Abbott, Delaware
Chapter Chair, Pat
Slaughter, who served in
the Carter White House,
and LDA president Pat
Smith
Photo courtesy LDA
Delaware: Chapter 4 for Lyme
Disease Association
In the Spring 2003, the Lyme
Disease Association traveled to
Delaware to meet with a number of
interested individuals led by Tami
Abbott, who not only wanted to learn
about Lyme disease but also wanted
to do something about it.
The LDA took Dr. Brian Fallon
Columbia University and Dr. Daniel
Cameron, International Lyme &
Associated Diseases Society (ILADS)
Board of Directors’ member. In a
forum featuring not only the physicians’ presentations but one from
LDA President Pat Smith, the
attendees heard about the neuropsychological effects, testing difficulties,
and political pitfalls of Lyme disease.
The speakers gave several press
interviews after the event, including
one to “Tincup” who traveled from
Maryland to cover the event and
published a story about it.
As a result, a number of the
attendees decided to team up with the
Lyme Disease Association. They
would like to raise funds for research, help facilitate political
activity leading to solutions for Lyme
patients, and educate the public.
LDA and its Delaware contingent
have already met with a number of
different government officials as a
result of this and subsequent meetings. State officials have also been
contacted.
December 31, 2003, the group in
Delaware, known unofficially as
Club Cure, officially became Lyme
Disease Association, Delaware
Chapter. LDA welcomes its New
Year’s Eve Baby, which joins the
Association’s five affiliates and three
other chapters in the nationwide
fight against Lyme disease.The first
meeting will be in February.
Photo courtesy LDA
Left to right: Brian Fallon,
MD, director of the Lyme
Research Center at
Colunbia University, Tami
Abbott, Pat Slaughter, Pat
Smith, and Daniel
Cameron, MD, an ILADS
director and member of the
recently published ILADS
guidelines task force.
Spring 2004
Publication of the California Lyme Disease Association
More LDA News
LymeAid4Kids fund kick-off
continued from page 1
Club, The Kitchen God’s Wife, and
The Hundred Secret Senses have
appeared on the New York Times
lodge in the central nervous system.
Early diagnosis and appropriate
treatment may prevent the development of chronic disease,
Photo courtesy LDA
one main reason for
creation of this fund.
The fund will be
administered by the LDA
through individual
treating physicians
nationwide who agree to
participate, and will
provide up to $1,000 per
child for evaluation
including the visit,
testing, and perhaps
beginning treatment.
“As the fund grows,
the
amount per child
LDA president Pat Smith accepts check from worldrenowned author Amy Tan, who has Lyme disease.
could increase to provide
further services,” says
Ms.
Smith,
whose
own daughter
Bestseller List, will support the fund
missed
four
years
of
school due to
through the proceeds from the
speaking tour for her new book The
Opposite of Fate: A Book of
Musings, which reveals her own bout
with Lyme disease in the final
chapter.
“We consider the creation of this
formal fund, the first of its kind for
Lyme disease, a beginning,” said
LDA president Pat Smith, “and we
hope that others will follow Ms.
Tan’s lead with generous donations
to the fund.”
Lyme, the most prevalent vectorborne disease in this country, often
strikes children, who may lose years
of school and their childhood due to
its debilitating manifestations. Risky
behavior may be as simple as petting
the dog, playing outside, and even
having a live Christmas tree. It is
estimated that 10-15% of those who
are diagnosed with Lyme go on to
develop chronic disease, which may
Number 36
chronic Lyme disease. “Right now,
we need to address getting children
properly diagnosed as early as
possible.”
The LDA has funded a number of
research projects coast to coast and
with its Connecticut affiliate, Time
for Lyme, is partnering with Columbia University to open an endowed
chronic Lyme disease research center
to be housed at Columbia, the first of
its kind in the world. Studies from
Columbia have highlighted cognitive
deficits in children, causing them to
develop learning disabilities, which
fluctuate with the disease. One
Columbia study funded by LDA,
showed an increase in IQ of 22
points in a child with Lyme disease
after treatment for the disease.
The LDA expects to have details
of the LymeAid4Kids fund available
for physicians and families on its
website by the end of this year.
www.LymeDiseaseAssociation.org.
Tax deductible donations earmarked
for the fund can be made payable to:
Lyme Disease Association, Inc. and
sent to: LDA P.O. Box 1438
Jackson, NJ 08527. Please note
LymeAid4Kids on your check memo
or letter.
LymeAid 4 Kids Fund Parameters
• Applicants under the age of 21 are eligible to apply for up to
$1,000.
• The applicant shall possess neither medical insurance coverage
nor receive government assistance for medical treatment.
• The Patient/guardian must sign a statement waiving medical
privacy.
• The applicant/guardian shall sign a certified statement testifying
that they are suffering from financial hardship.
• The applicant shall have a signed & dated doctor recommendation that the applicant is suffering from financial hardship,
and that based on symptoms and history, Lyme & other tickborne disease testing and/or treatment is necessary.
• The LDA retains the right to obtain the tax records and medical
bills of the applicant and/or guardian.
• The LDA retains the right to be reimbursed by the applicant if
statements on application are proven false at any time.
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the Lyme Times
LDA, affiliate representatives,
meet with Health & Human
Services staff in DC
On November 5, a team of
fourteen people, including LDA
president Pat Smith, representatives
of several LDA affiliates as well as
doctors and researchers traveled to
Washington, DC, to meet with
Health & Human Services Secretary
Tommy Thompson’s staff, culminating weeks of organizing by the
LDA. The team spent almost three
hours presenting to HHS and highranking officials from the Atlanta
and Fort Collins CDC and the
National Institutes of Health, who
were present either in person or
through video teleconferencing.
Pat Smith introduced the session
with statistics about Lyme disease,
saying it is the most prevalent vector
borne disease in the US. After the
CDC criteria were revamped in 1996,
the number of reported cases decreased, at least on paper. The CDC
estimates the reported cases represent
about 1/10 of true cases. From 2001
to 2002 the numbers increased 40%,
from 17,000 to 23,000 cases, but
there was no media attention given to
this astonishing and serious development, according to Smith.
The CDC criteria fit only a small
subset of patients. The characteristic
erythema migrans occurs in less than
50% of cases and the vaccine study
showed that 81% of people with no
erythema migrans would not have
been confirmed using CDC criteria,
Smith said. She explained that
people are not being diagnosed early
because doctors are using the CDC
criteria for clinical diagnosis, and
this results in a possibly correctable
problem becoming chronic and
incurable.
Smith described how doctors
were being prosecuted for
overdiagnosis and overtreatment by
their state medical boards, eliciting
Page 32
surprise from HHS staffer Laura
Laller, who questioned why a
licensing board would care if a
doctor were treating a disease.
Alluding to the relative dearth of
national resources being allocated to
Lyme disease, Smith stated that the
CDC journal Emerging Infectious
Diseases had published 9 articles and
2 letters on Lyme disease during the
same time period that it had pub-
One of Dr. Fallon’s
patients had a 20-point
increase in IQ after
treatment with
antibiotics.
lished 58 articles on West Nile virus.
The CDC came to New Jersey to do a
study of children in schools, before
1999, Smith said. The LDA assisted
with the study, but the results were
never published, despite several
reminders.
In 1999 the Red Cross changed
their criteria to exclude chronic
Lyme disease from the donor list for
blood.
IGeneX Lab director Nick Harris,
PhD, started with the 1994 Dearborn
meeting that set the CDC criteria. He
emphasized that it was not a consensus meeting, and since he did not
agree with the majority opinion, they
acted illegally to remove him from
the committee. They decided to
exclude ospA and ospB because the
vaccine depended upon OspA. The
resulting ELISA has only 60%
sensitivity. Screening tests are
supposed to be at least 95% sensitive
- the test for anthrax, for example,
has a sensitivity of over 100%.
In the Engstrom study of 55
patients, five tests were run on each
participant and the sensitivity was
still low. In real life, insurance
companies will only reimburse a
single test. With Treponema
pallidum (the agent of syphilis) any
positive is positive, no matter if IgG
or IgM. If they had utilized two-tier
testing, they would have missed even
more.
Dr Harris showed a bar graph
that illustrated the sensitivity and
specificity of the different antigens,
comparing Lyme with syphilis. 41kD
has a lot of cross reactivity. 39 is very
“clean” for Lyme, i.e. there is little
cross reactivity. Other fairly clear
antigens are 18 , 23, 28, 58, 83.
Several that are less clean are 60, 66,
41, and 34.
PCR (polymerase chain reaction)
is now a 10-year old technology that
has most of the wrinkles ironed out,
according to Harris. Negative
controls are included with every
batch and contamination is rarely a
problem. PCRs are accepted in other
diseases. All CLIA labs have to do
proficiency testing five times a year.
The PCR should be accepted for
Lyme, stated Harris. The much
touted C6 peptide test still missed
30%.
Brian Fallon, MD, principal
investigator of the chronic Lyme
treatment study at Columbia University said that patients in his study are
showing extreme pain, fatigue and
physical disability. It is not a mild
disease. Many are young - 45 yrs and have been sick 7 years. They
took over a year to get diagnosed.
The mean amount of prior IV
treatment was 2 to 3 months, of oral
treatment 7.7 months. All meet the
CDC criteria.
Lyme disease symptoms of the
central nervous system can be
divided into 2 categories, Fallon said,
psychiatric and cognitive. 90% have
problems with mood. 71% have
headache and parasthesias; radicular
Spring 2004
Publication of the California Lyme Disease Association
pain is reported by over 60%.
When viewed on special brain
scans, irregularities can be seen in
certain parts of the brain that control
sensory, emotional and autonomous
nervous system. The
parahippocampal gyrus, inferior
parietal lobe, the insula and ungulate
hippocampus may show areas of
reduced blood flow, providing direct
biological evidence for neurologic
symptoms the patients report. 90% of
children with LD complain of mood
swings; 86% have headache and/or
fatigue; 81% have sleep problems
and 76% suffer from depression. One
of Fallon’s patients had a 20-point
increase in IQ after treatment with
antibiotics.
Harvey Kliman, PhD, from
Pennsylvania, described his group’s
mission - to improve the lives of
people infected with TBDS through
education, support, public information, etc. and partnerships with other
organizations. In September,
Pennsylvania introduced legislation
modeled on the Rhode Island bill to
protect LLMDs. The Pennsylvania
group has printed and distributed
over 60,000 copies of their information booklet, sending them all across
the country.
Tami Abbott from Delaware
described her experience with
contracting Lyme disease and then
becoming pregnant. Her doctor was
not willing to treat her with antibiotics so she went to another doctor who
prescribed antibiotics throughout.
Her son is now 3 and seems fine,
although she never stops worrying
about him and she imagines that
every ailment he develops may be
Lyme disease.
Diane Blanchard and Debbie
Siciliano of Time for Lyme in
Greenwich said that stopping lab
reporting of Lyme disease after CDC
funding dried up is going to have a
dramatic negative effect on Connecticut patients. Lab reporting historically accounts for 80% while
physician reporting accounts for only
20% of the reporting of Lyme disease
Number 36
statewide. According to the Connecticut Dept. of Health, the CDC
recommended a shift in priorities
from surveillance to prevention.
“No one would suggest that
prevention is not important,”
Siciliano said, “but not at the
expense of surveillance. First, it will
lead to an inaccurate perception of
the potential risk of Lyme, and
minimize the enormity of the
problem not only in Connecticut, but
nationally. Second, the reduction of
statistics will also affect legislative
efforts to allocate much needed
funding for Lyme disease.”
A report titled “Animal-Borne
Epidemics Out of Control: Threatening the Nation’s Health” (August
2003) examines the proliferation of
zoonotic diseases throughout the
country and states, “Instead of
implementing a proactive nationwide
animal-borne disease management
strategy, the public health response
to Lyme disease was left to evolve as
the disease spread across the country.... The Centers for Disease
Control and Prevention has developed a plan to address animal-borne
diseases, but has not received
adequate resources to implement the
plan.”
According to the MMWR Final
2002 Report, the CDC allocated
nearly 7 times more funding for West
Nile virus even though the incidence
of Lyme disease was at least 8 times
greater. In 2002, estimated Lyme disease
cases were more than 80
times that of West Nile
Virus, yet Lyme disease
received only 19% higher
funding. Even worse,
despite a 40% increase in
reported Lyme disease
cases in 2002, budgeted
funding for Lyme disease
in 2004 increased a mere
4 % versus a 44%
increase for West Nile
Virus.
tion, estimated that the average
treatment, diagnosis and lost wages
related to Lyme disease was $61,688
per year per patient. Multiplied by
240,000 cases, the potential economic loss due to this illness is
nearly $15 billion yearly.
Blanchard called for the CDC to
assume responsibility for the spread
of this disease and take aggressive
action to end its proliferation.
Jill Auerbach of Stop Ticks On
People (STOP) in Dutchess County,
NY, said that the funding for their
tick control project is now running
out just as the 4-poster stations are
starting to come into use. They have
run into the same lack of funding for
Lyme disease compared to WNV.
Tick control research is all but
ignored, Auerbach said.
Auerbach said that Dutchess
County set a goal to become a role
model for what an integrated
approach can do to reduce tick borne
diseases. One of the activities is a
CDC award of one of the five
community grants to the American
Lyme Disease Foundation (ALDF)
with the Dutchess County DOH and
the Institute of Ecosystem Studies
(IES) to reduce Lyme disease in
Dutchess County.
“It is $300,000 for 3 years
beginning March 2001,” Auerbach
said, “and was to include intervention methods with the 4-Poster
Contingencies, an
actuarial trade publicaPage 33
the Lyme Times
Stations (target the deer) and the bait
box (target the mice). We have set up
four community intervention sites,
gained homeowner approvals,
collected data from surveys, incorporated a community advisory board,
presented many educational programs and more. Due to delays for
the EPA’s approval of the use of
permethrin and the USDA/ALDF
licensing process for the ‘4-Poster’
(both completed approximately 2
months ago), the 4-Posters will first
be utilized in the spring of 2004
which is when the grant terminates.
There is fierce competition for the
follow on grant which only includes
two sites vs. the previous five. What
if we are not able to complete the
intervention data due to the restricted
number of sites? It will have been a
waste of almost $1 million and leave
a very disheartened, disappointed
public,” Aueebach concluded.
Connecticut Attorney General
Blumenthal addressed the group by
telephone. Hearings last year in
Connecticut explored the issue of
improper denial of coverage by
insurance companies, he said, adding
that these decisions should be made
by doctors who have examined the
patient. Connecticut was planning
more hearings in January (see article
on front page).
Phyllis Mervine, president of the
California Lyme Disease Association
(CALDA) said that Lyme and Ixodes
pacificus ticks occur in almost every
county all over the state, and that
doctors are not reporting. Many will
not stray from the CDC criteria.
There are fewer than 20 LLMDS
(Lyme-literate physicians) in the
entire state. Only 94 cases were
reported in 2002 - the same year
there were 374 unduplicated cases
from a single laboratory.
She said that in her rural community, 37% of the residents had
definite or probable LD, according to
a 1988 research study. CALDA is
working on a Lyme reporting bill
that would require labs to report
cases.
Page 34
Mervine recounted her experience
on the NIH Advisory Committee for
the Clinical Trials (the Klempner
study). She said the patient community was betrayed by the NIH when
they headlined a biased interpretation
of the results on the NIH website.
Patients are being denied treatment
based on the published results of the
study. The committee failed to
perform its mission, and complaints
about the functioning of the committee and the biased interpretation of
the trial results were ignored.
Mervine pressed for another meeting,
she said (only 2 had occurred in the 6
years of the trial); one was scheduled
The CDC was asked to
actively disavow the
use of its surveillance
criteria for diagnosis
but then was cancelled after 9/11.
The NIH website continues to carry
the headline: “Intensive Treatment
[sic.] does not help Chronic Lyme
Disease.” Patients have been denied
treatment as a result.
At the close of the meeting, Pat
Smith presented an agenda to Deputy
Assistant Secretary for Health Dr.
Harold Zucker asking the CDC to
actively disavow the use of its
surveillance criteria for diagnosis.
She asked that CDC actively contact
state health departments and tell
them that the criteria are for surveillance only. Decisions made by CDC
and NIH had a trickle-down effect,
she said, causing patients not to be
able to be diagnosed and treated and
reimbursed by insurance companies
Other agenda items included:
• A second level of reporting from
physicians should be created,
allowing for clinical diagnosis with
or without positive serology. The
CDC should also adjust the criteria
better to reflect reality.
• Tick control efforts should be
funded, designed, evaluated, and
employed.
• HHS shall create an advisory
board to include representatives of
advocacy groups
• The agencies dealing with LD
shall coordinate their efforts
• Research funding should be
provided to explore other insect
vectors and other modes of transmission (eg. sexual), and safety of blood
supply
• NIH expenditures for West Nile
virus (big budget) vs. Lyme disease
(little or no funding) should be
explained
• Testing criteria should be
improved, and the requirement of
IgM and IgG for Lyme should be
evaluated
• Website - omit the Klempner
study and update information on the
CDC website
• That Lyme can and does cause
death and has serious of consequences for children should be
recognized.
Zucker was visibly relieved when
presented with the agenda, and
assured the group that their views
would be carefully considered. As a
final gesture, he asked for responses
from other government people who
were present, but none had anything
to say.
Onlookers speculated that HHS
staff had not known what to expect
from the group of advocates. “Our
goals were reasonable,” stated Smith.
“The government will be giving us
an update on the results of the
meeting. We hope that they will take
steps to get to the bottom of some of
these issues which so heavily impact
our patients and doctors alike
nationwide.”
Smith will be contacting HHS to
follow up on the meeting.
Spring 2004
Publication of the California Lyme Disease Association
Guidelines: Patients should
use this opportunity
from page 1
“There simply isn’t sufficient
evidence that short term treatments
work on enough patients to justify a
one-size-fits-all approach at this
time.”
Several studies report high failure
and relapse rates using short-term
treatment protocols. Many patients
report that they have felt abandoned
by their doctors when short-term
treatment has not been curative.
creased 33-fold since 1982. By 2000, it
is estimated that more than 1.3 million
cases had occurred. The annual direct
medical cost of Lyme disease in the US
is estimated to be at least $60,000,000.
There is no test currently available that
can demonstrate the eradication of B.
Photo courtesy Ken Liegner
Lyme disease currently accounts
for more than 95% of all vector borne
diseases. Lyme disease cases have inNumber 36
The ILADS Guidelines have been
endorsed by the LDA and by
CALDA. CALDA is recommending
that patients and advocates order
copies of the Guidelines and send
them to healthcare professionals with
a cover letter explaining how the
issues may be framed to gain the best
advantage for patients. A sample
letter is provided on the next page.
Historically, people with
treatment-resistant, chronic Lyme
disease have faced an uphill battle
when trying to obtain more that a few
weeks of antibiotic treatment, says
CALDA president Phyllis Mervine.
The most referenced “standard of
care” was the restrictive IDSA
(Infectious Disease Society of
America) guideline that limited
people to 3 weeks of antibiotics and
suggested that people who did not
recover with that regimen no longer
had Lyme disease but post-Lyme
syndrome.
According to actuarial reports,
the average patient with persistent
Lyme disease sees five doctors over a
21-month period to obtain an
accurate diagnosis. By that time,
patients have the late stage form of
Lyme disease that is much more
difficult to treat. The purpose of the
guidelines is to provide doctors with
the guidance and support they need
to diagnose early, when the chance
for cure is best, and to provide
effective treatment.
Dr. Phillips noted that a recent
study had shown that patients with
chronic Lyme disease suffer from
physical disability of a magnitude
equivalent to patients with congestive
heart failure. “These are seriously ill
patients,” he said, “who require
individualized treatment approaches
that reflect their clinical response.”
He criticized short-term treatment
protocols that rely too heavily on
flawed diagnostic tests and ignore
patient symptoms as “greatly out of
step with what we are seeing in
actual clinical practice.” For over
3400 patients screened for the NIHfunded Columbia persistent Lyme
disease study, the mean duration of
IV treatment was 2.3 months and the
mean duration of oral antibiotic
therapy was 7.5 months.
Anti-Infective Therapy (ERAIT) and
are available to subscribers online.
As with other peer reviewed journals,
Expert Review of Anti-Infective
Therapy owns the copyright.
Outgoing ILADS president Andrea Gaito,
MD, passes the gavel to incoming president
Steven Phillips, MD of Connecticut, at the
ILADS meeting in November.
burgdorferi, and studies determining
the optimum length of antibiotic treatment or even the optimum choice of
antibiotic are lacking.
ILADS is an international, interdisciplinary group of healthcare providers and researchers dedicated to improving the diagnosis and treatment of
tick-borne diseases. Members include
neurologists, rheumatologists, internists, family practitioners, pediatricians, immunologists, ophthalmologists, dentists, and psychiatrists. Collectively, they have treated tens of thousands of patients with tick-borne diseases, and some of the toughest cases of
Lyme disease.
The ILADS Guidelines appear in
the online journal Expert Review of
According to Mervine, now that
ILADS has published guidelines for
the clinical management of Lyme disease, the field has shifted toward more
liberal view that advises individualization of treatment based on the patient’s
clinical response, rather than on an
arbitrary endpoint. Patients should take
advantage of this.
CALDA recommends that
patients frame the issue in terms of
“patient choice,” as opposed to the
“right” standard of care. Patient
choice and informed consent are both
mainstream concepts recognized by
the medical establishment and law.
The American Medical Association
requires that the physician disclose
and discuss with the patient not only
the risks and benefits of the proposed
treatment, but also those of available
alternative treatments (regardless of
their cost or the extent to which the
treatment options are covered by
health insurance). This requirement
Page 35
the Lyme Times
is rooted in the medical-ethical
concept of patient autonomy and is
reflected in the legal requirement of
informed consent—which all states
have embraced. When a patient has a
serious illness, like Lyme disease,
where different treatment options
exist with different risk-benefit
profiles, the stakes are high and there
is no “right” treatment. The treatment choice involves trade-offs
between the risks and benefits of the
different treatment alternatives that
only patients—who know the kinds
of risks they are willing to run and
the types of quality of life outcomes
that matter to them—are uniquely
suited to make.
According to AMA guidelines,
“This communications process… is
both an ethical obligation and a legal
requirement spelled out in statutes
and case law in all 50 states.” The
AMA guidelines define informed
consent as “more than simply getting
a patient to sign a written consent
form,” and advise doctors to document the recommended communications process in which they inform
the patient of the risks and benefits
of the treatment alternatives in the
patient’s medical record, to protect
themselves in case of litigation.
take sides in the scientific debate and
to provide information about both
standards of care. [Reserve this point
for when the letter is being sent to
government agencies]
For more information or to
purchase the Guidelines, go to
ILADS’ website: www.ilads.org, or
you may send a check for $15 to
ILADS, PO Box 341461, Bethesda,
MD 20827. Bulk orders of more than
40 copies are available at a reduced
price of $6.
To obtain an online copy of the
cover letter opposite, please email
the Editor.
Cover Letter for sending ILADS
Guidelines to Healthcare
Professionals
People or groups wishing to send copies of the Guidelines to their
own personal physicians, or in the case of medical professionals, to
colleagues, may use this template to compose their own cover letter.
People who do not wish to buy multiple copies of Guidelines may use
this letter to inform their healthcare providers that the ILADS guidelines
are available for purchase, referring them to the address provided at the
end of the article.
Dear_ ________:
I have enclosed a copy of the newly published evidence-based
Guidelines for the management of Lyme disease from the International
Lyme and Associated Diseases Society (ILADS). You will notice that
these Guidelines provide a general scientific and theoretical basis for
managing Lyme disease; for more specific suggestions, treatment
options, dosages, etc. please go to the ILADS website at www.ilads.org
and look for the Joseph Burrascano, Jr., MD, Diagnostic and Treatment
Guidelines.
• Scientific uncertainty has
resulted in more than one treatment
approach (like prostate cancer);
[“I”or your group name] welcome(s )the publication of these Guidelines and hope(s )that they will prove useful to healthcare professionals
treating Lyme and other tick-borne diseases. According to preliminary
results on a patient survey, 86% of patients with negative ELISA tests
who responded said that their doctors improperly told them they did not
have Lyme disease based on the CDC criteria. Published studies prove
that the ELISA is not sensitive enough to be used as a screening test.
Published studies also prove that standard treatment (3-4 weeks) for
Lyme disease often fails and relapses are common.
• Physicians, insurers, patients
and governmental agencies are aware
that there is more than one treatment
choice;
Scientific uncertainty about Lyme disease has resulted in more than
one treatment approach (like prostate cancer). [Your group name] agrees
with the U.S. Preventive Services Task Force, AMA, ACP and other
professional medical organizations interested in promoting informed
patient consent and wants to make sure that:
• Physicians give patients
sufficient information about treatment options to enable patients to
make a meaningfully informed
choice and to respect the autonomy
of that choice;
§ Physicians, insurers, patients and governmental agencies are
aware that there is more than one treatment choice;
Below are the key points in the
approach CALDA is recommending
to patients and patient advocates to
frame the issue.
• Reimbursement for treatment is
rendered in accordance with the
selected standard of care; and
• We want the government to not
Page 36
§ Physicians give patients sufficient information about treatment
options to enable patients to make a meaningfully informed choice and to
respect the autonomy of that choice;
§ Reimbursement for treatment is rendered in accordance with the
selected standard of care.
Please share these Guidelines with your colleagues, and thank you for
your interest.
Spring 2004
Publication of the California Lyme Disease Association
wife underwriting all expenses of
Climb for Lyme, one hundred
percent of the money Bacco raises
will go directly to Lyme disease
education and research.
Climber Ken Bacco missed the summit of Mount Aconcagua, Argentina, by 1300 feet.
Aconcagua is the highest peak in the Western Hemisphere.
Mountaineer Climbs for Lyme
Connecticut mountaineer Ken
Bacco recently returned from
Argentina, where he took part in
Climb for Lyme, a fund-raising
project for Time for Lyme Inc., an
affiliate of the national Lyme Disease
Association, Inc. According to the
Greenwich Times, altitude sickness
kept Bacco from reaching the summit
of Aconcagua, but he said he raised
about $25,000 in pledges and helped
increase awareness about the tickborne illness that has affected him
and so many others.
Bacco, who owns a general
contracting company, was diagnosed
with Lyme disease in 1998. He has
recovered after a four-year battle with
Lyme, including two years on both
oral and intravenous antibiotics. Last
year, he teamed up with Time for
Lyme, the local Lyme disease
research, education and advocacy
organization, to help raise the
remaining $1.8 million needed to
open the Lyme Disease Research
Center at Columbia University in
New York City. With Bacco and his
Special Children’s Issue
Children are often severely affected by Lyme and other
tick-borne diseases, yet according to experts, often do
well if treated appropriately. We are planning a special
issue of the Lyme Times focussed on children and
their unique problems. We would like the issue to be
a resource for parents, educators, and healthcare
professionals. We already have a number of articles
lined up, but if you have some information you think
would be useful, please send articles and suggestions to the Editor. Information about where parents
and teachers can find help is also welcome.
Number 36
“In addition to representing my
personal victory over Lyme disease, I
also want Climb For Lyme to set a
positive example for others who have
been or may be afflicted with this
terrible disease and to raise funds to
help eradicate this growing epidemic,” Ken Bacco told Fairfield
Living . “My son also suffered from
Lyme disease. Every day I meet
someone who has had - or knows
someone who’s had Lyme disease.
We are all at risk.”
Bacco stopped his climb late last
month around 21,500 feet, just short
of the 22,840-foot peak of Mount
Aconcagua, dubbed the “Sentinel of
Stone.” He has been climbing
mountains for about 30 years and has
never gotten altitude sickness as
severely as he did this time, he said.
During his trip Bacco and his guide
used a satellite telephone to post
updates about their trip through
cybercasts.
Time for Lyme officials thanked
Bacco for his effort and said they
hope to continue working with him
on future projects.
Climb For Lyme will help Time
For Lyme reach its goal of $3 million
to make the Columbia Lyme Disease
Research Center research center
operational. It will be the first
research center in the nation for
chronic Lyme disease. Supporters
can make pledges on-line at
www.climbforlyme.com, or mail
checks to Time For Lyme, Inc., P.O.
Box 31269, Greenwich, Connecticut
06831. Checks can me made payable
to Time For Lyme, Inc. - Climb For
Lyme.
Time For Lyme also organized
and sponsors a Lyme disease support
group in Fairfield County, Conn.
For further information about
Time For Lyme, please call (203)
969-1333.
Page 37
the Lyme Times
Lyme Disease
Association
2003 Grant
Awards
The Lyme Disease Association,
Inc. (LDA) awarded grants in 2003
totaling $82,000. LDA awarded
monies to Columbia University for
the endowed chronic Lyme Disease
Research Center and its current
research projects and gave an
educational grant to International
Lyme & Associated Diseases Society
(ILADS) to help with its newly peerreview-published Lyme disease
treatment guidelines. Monies were
also awarded to the Lyme Society of
the United Kingdom for a Lyme
disease medical conference held
there, and the LDA also produced the
Joseph Burrascano, MD, and Robert
Bransfield, M.D. DVD for presentation at that conference and the
German conference held the same
year. Affiliate Lyme Disease
Network was given a grant to
upgrade its educational website,
Lymenet.org. Education grants were
also awarded to LDA affiliate Lyme
Disease Association of South Eastern
Pennsylvania (LDASEPA) to
upgrade and reprint its Basics
booklet and to affiliate Lyme Association of Greater Kansas City
(LAGKC) which provided educational packets to many school nurses
throughout Kansas.
Regional News
California Physician Response
to TBD Questionnaire
In February 2003, the California
Department of Health Services
(CDHS) posted a questionnaire on
tick-borne diseases in the Medical
Board of California’s quarterly
publication, the Action Report. The
purpose of the survey was to assess
physician awareness of ticks and
tick-borne diseases in California.
This information will aid CDHS to
develop educational materials on
tick-borne disease prevention that
physicians will find useful. This
article summarizes the results of the
survey.
A total of 303 physicians who
currently or recently practiced in
California completed and returned
the questionnaire. Collectively,
respondents reported specialty was
family practice (63-21%), followed
by internal medicine (54-18%),
pediatrics (50-17%), surgery (227%), dermatology (18-6%) and
obstetrics-gynecology (13-4%).
Two hundred fifty-six (85%) of
the respondents believed that their
patients were potentially exposed to
Borrelia burgdorferi, the bacteria
that causes Lyme disease (LD),
locally or in the county where they
practice. Ninety-eight (32%) physicians indicated that they had diagnosed at least one case of LD in a
patient while practicing in California. The five most common specialties among those who had diagnosed
LD were family practice (26-27%),
pediatrics (22-22%), internal
medicine (12-12%) and emergency
In 2003, another LDA-funded
research project was published in
peer-review, “Regional Cerebral
Blood Flow & Cognitive Deficits in
Chronic Lyme Disease,” summer
2003 issue of The Journal of Neuropsychiatry and Clinical Neurosciences, Fallon, et al.
Check the LDA website
www.lymediseaseassociation.org for
updates on grants, deadlines, and
RFPs.
Page 38
Spring 2004
Publication of the California Lyme Disease Association
medicine (8-8%). Of 77 respondents
who indicated the number of LD
cases they had diagnosed in the past
five years, 66 (86%) diagnosed one
case, six (8%) diagnosed three to five
cases, three (4%) diagnosed six to 25
cases, and two (3%) diagnosed more
than 25 cases. Of those who had
diagnosed LD, 70 (71%) observed
the erythema migrans (EM) rash
associated with LD. Of the 98
respondents who had diagnosed a
case of LD, 78 (80%) were aware
that LD was reportable and 49 (50%)
had actually reported cases of LD to
their local health department.
The questionnaire also focused on
knowledge and practices associated
with tick bites. In a typical year, 109
(36%) of the respondents reported
seeing no tick bite victims, followed
by one to two tick bite victims (10334%), six to 25 (42-14%), and three
to five (38-13%) tick bite victims per
year Only seven (4%) physicians,
who practiced in Contra Costa, El
Dorado, Mendocino, San Joaquin,
and Santa Clara counties, reported
seeing more than 25 tick bite victims
per year. One hundred eighty-six
(61%) physicians reported that a
patient had presented to them for the
removal of an attached tick and 158
(52%) of all the physicians would
recommend testing a tick for B.
burgdorferi. Several physicians
qualified that they would submit a
tick for testing only if it had been
attached for greater than 24 hours or
was a particular species; others noted
that they would submit a tick for
species identification only, not
testing. Most respondents, 234
(77%), said they provided recommendations to their patients to
prevent tick bites.
This survey indicates that many
physicians in California are aware of
and experienced with tick bites or
Lyme Disease among their patients.
The responses to the questionnaire
also identified issues for which
CDHS can improve its educational
program to better address the needs
of physicians regarding the manageNumber 36
ment of tick bites. For example,
while many physicians indicated a
disposition to have ticks which been
removed from patients tested for
pathogens, testing a tick for B.
burgdorferi may provide clinically
important information only if the tick
is identified as the appropriate
species (Ixodes pacificus), and was
attached for greater than 24 hours (
the minimum period necessary to
effect transmission). In fact, several
respondents indicated uncertainty
whether results of tick testing were at
all useful in clinical management of
patients. Indeed, management of a
patient who presents with a documented tick bite should be based on
clinical presentation and course,
regardless of tick-testing results.
Also of note was that while most
responding physicians were aware
that LD is reportable, only half of
those physicians who had diagnosed
a case of LD had reported it to their
local health department. Reporting
LD and other tick-borne diseases to
the local health department is not
only legally mandated (Title 17,
California Code of Regulations) but
provides data valuable toward
assessing the regional risk of these
diseases. Based on the epidemiologic
data accumulated through disease
reporting, the practicing physician
can better judge the likelihood that a
patient in his or her practice area
could have been exposed to one of
these disease agents and thus better
direct and interpret their diagnostic
workup.
of transmission (e.g., direct contact,
inhalation) are far more common.
While some respondents (23%)
believed that their patients could be
locally exposed to tick-borne encephalitis (TBE), it should be noted
that TBE, a viral disease found in
European Ixodes ricinus ticks, has
not been reported in North America.
Several respondents astutely noted
that localized skin infections and tick
paralysis, and ascending paralysis
produced by toxins in feeding
Dermacentor spp. ticks, are other
rare complications associated with
tick bites in California.
At least seven tick-borne diseases
have been described in California.
The most commonly reported tickborne disease is LD (70-145 cases
per year in the last five years),
followed by relapsing fever (3-17
cases per year), and Rocky Mountain
spotted fever (0-5 cases per year).
Other tick-borne disease infrequently
reported in California include
anaplasmosis (formerly granulocytic
ehrlichiosis), monocytic ehrlichiosis,
babesiosis, and Colorado tick fever.
Tularemia and Q fever may be rarely
transmitted via ticks, but other routes
CDHS would like to thank the
physicians who participated in this
survey. Additional information on
tick-borne diseases in California may
be obtained by contacting the CDHS
Vector-Borne Disease Section at
(916) 552-9730 or visiting the Web
site: www.dhs.ca.gov/ps/dcdc/disb/
disbindex.htm. kay
www.lymesite.com
There are limitations to the
interpretation of the results from this
questionnaire. It is unclear how
accurately the sample of 303 respondents represents the approximately
60,000 physicians who currently
practice in California. Physicians
who have diagnosed a tick-borne
disease or who have seen ticks on
patients may have been more
motivated to respond to the questionnaire than those who have not. This
may result in a overestimation of the
number of physicians who believed
that a person can become infected
with LD in the county where they
practice (85%). Nonetheless, as this
is the first statewide assessment of
this type to be conducted, the results
can offer a rough guide of current
knowledge and practices of some
California physicians regarding tickborne diseases and thus will be
helpful in further developing
informational materials.
Reprinted from the Medical
Board of California ACTION
REPORT Page 8, February 2004,
Vol. 88.
Page 39
the Lyme Times
New York activists working
hard for Senate passage of
OPMC reform bill
by Ellen Lubarsky
Activism by Lyme disease and
other patient groups, plus intense
behind-the-scenes negotiations, has
finally brought New York closer to
passage of Senate Bill S5221 that
reforms the Office of Professional
Medical Conduct (OPMC), the state
body responsible for investigating
and disciplining errant doctors.
Passage of the bill will mean the
culmination of more than three years
of efforts to stop the OPMC from
unfairly and disproportionately
targeting physicians who treat people
with chronic Lyme disease (LLMDs).
The Assembly version of the bill,
Health Committee Chairman
Gottfrieds A.4274a, has now passed
three years in a row.
Senator Kemp Hannon, chair of
the Senate Health Committee, is allimportant in getting the reform bill
(S5221) passed. After years of no
interest, he is now looking at OPMC
reform seriously. His goal is reportedly to strengthen OPMCs ability to
prosecute bad doctors and at the
same time strengthen good doctors
ability to defend their work.
Patient advocates agree. They
know that LLMDs fall into that good
doctors category, they say, and will
be protected by OPMC reform which
affords due process rights to physicians.
Organizers are asking for help
from all people affected by Lyme
disease to keep up the pressure on
Senator Hannon. They believe he
needs to get hundreds of calls from
New York State physicians asking
him to support S5221. People are
being asked to get the word out to as
many NY State M.D.'s as possible.
A sample letter to physicians is
provided (at right, or for online
Page 40
“The Office of
Professional Medical
Conduct has been
used as a tool of the
insurance industry.
This is not a health
issue, it is a money
issue.”
version, see “Instructions,” below).
Print out and make copies of the
letter. It explains S5221 and urges all
New York State doctors to contact
Senator Hannon.
We have been fighting for this
bill for the past three years. It will
help protect our medical care
throughout the country, which, as
you know is seriously endangered.
We urge everyone to make this action
alert a priority until the bill becomes
law..
When we started this fight, we
vowed we would not go away. That's
because we can't; our lives depend on
winning. So please let’s all pitch in
to win and save our access to decent
medical care.The doctor you save
may be your own, which means that
the life you save may be your own.
Ellen Lubarski is a member of the
Assemblyman Joel Miller,
LDA
affiliate Manhattan Lyme
R-Poughkeepsie
Disease Support Group.
Instructions for Action
1) At www.healthlobby.com/OPMCreformLetter.htm there is a flyer
that explains the situation and can be sent to physicians, or copy the
letter at right.
2) Please print this flyer and make copies.
3) Send or hand the letter to any NYS doctors you might know
personally..
4) If you live in NYS, find a Medical Arts Building and hand the
letters to all the receptionists in doctors’ offices.
5) FOR SNAIL MAIL:
To get names and addresses of doctors in NYS, go to
www.healthgrades.com and click on “Physician Profiles” then choose
to do the search by city/state. If a doctor has multiple addresses listed,
pick the last one.
You can also do the search for doctors at <http://yp.yahoo.com>
6) Pick a specialty, but make sure you are only sending to MDs and
DOs.
7) Don’t worry about duplicating somebody else’s work. Even if you
do, it will just double the chances that the doctor will contact Hannon.
8) You can use the return address Committee for OPMC Reform with
your own street address if you wish.
Spring 2004
Publication of the California Lyme Disease Association
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Prepared by
Number 36
Page 41
the Lyme Times
Midwest group is active
to: Lyme Association, P.O. Box
25853, Overland Park, KS 66225.
by Kathy White
We gave a power point presentation to the Kansas State Legislature’s
House of Representatives health
committee in January to tell them
about Lyme disease in Kansas, the
recently passed Rhode Island bill,
and the need for similar legislation
in Kansas. In August, some of our
board members met with Kansas
Representative Dennis Moore to
discuss Lyme disease and the
proposed federal Lyme disease bill.
We are in the process of seeking
funds for and preparing education
packets for our school education
project. We hope to provide tick
removal tools and information about
tick-borne diseases to several
hundred more schools this spring.
We distributed 424 packets to
schools last year. We have just
updated our handbook, “Handbook
for Prevention and Education of
Lyme and Other Tick-borne Diseases,” which will be included in the
packets.
We are selling tick removal kits
for $5. The tick remover tools in the
kits make it easier to remove the tiny
nymphs as well as the adult ticks
safely. To purchase a kit, send a
check made out to Lyme Association
Deaths
CALDA recommends an autopsy where possible in all Lyme deaths to
document that such patients died with active Lyme and death was due to or
concurrent with Lyme infection.
Harry Hartner of Manhattan,
Kansas, died on Jan. 26, at the age of
62, after suffering from Lyme disease
and terrible headaches for almost 4
years. He had been on an IV antibiotic for 4 weeks. He had a bad
Herxheimer reaction from the drug,
which was causing a severe headache
that wasn’t relieved by medication,
severe insomnia which was continuing for several days in a row, severe
depression, and severe thinking problems. He took his own life.
Harry had several tick bites in
May of 2000 after working in his
pasture and became ill shortly after
that. He contin-ued to suffer from
chronic fatigue and headaches, and
he kept getting fevers. His wife
Karen suspected it was Lyme disease,
but they were told by doctors that
people can’t get Lyme disease in
Kansas. The following year, in May,
2001, he was in his pasture again
and was bitten by several more ticks.
He became ill just 16 hours later,
Page 42
with a high fever. This time he was
treated with 3 weeks of doxycycline.
He continued to suffer from a severe
headache and depression and went
from doctor to doctor for two more
years, undergoing numerous tests
which didn’t help. He finally saw a
Lyme disease doctor in July of 2003
and began antibiotic treatment on
August 1. He and his wife joined the
Kansas City Lyme Association in
September. Harry took oral medications: clindamycin, quinine,
amoxicillin, and flagyl, before
starting Claforan by IV. Nothing
made the headache go away. He
became discouraged.
Harry leaves his wife Karen; a
son, Keith Hartner; 2 daughters,
Hilary Wahlen and Kayleen Classen;
one sister; and 2 grand-daughters.
Harry’s family wants to prevent
this tragedy from happening to other
people. They are trying to get the
word out that Lyme disease is in
Kansas.
Gilbert T. Perkins Gilbert “Gib”
Thornton Perkins, 77, died peacefully at his home in Landenberg, PA
on Sunday, January 18th, 2004 after
a long battle with Lyme disease.
Born in Rugby, VA, he was the son
of the late George B. and Daisy O.
Perkins. Dr. Perkins served during
World War II. He was a polymer
chemist at the DuPont Company,
working at various sites in the
Wilmington, DE area and Beaumont,
TX for 27 years. Dr. Perkins was a
sportsman, enjoying hunting and
fishing and was an avid vegetable
gardener. He was active in the
community, serving as London
Britain Township Supervisor and
Avon Grove Little League umpire.
He supported the local Boy Scouts.
He was the husband of Regina A.
Perkins with whom he shared 48
years of marriage.
John Drulle, 59, of Jackson, NJ, died
at home on Nov. 7. He suffered for
15 years from Lyme Disease, which
caused his death. He was a physician
who practiced medicine for 23 years.
He was a 1967 graduate of the NJ
Institute of Technology, Newark,
receiving a bachelor’s degree in
Mechanical Engineering. He received his doctorate of medicine in
1980 from the Universidad Del
Noreste, Tampico, Tamaulipas,
Mexico. His education includes the
Fifth Pathway Program, 1980-81;
University of Medicine and Dentistry
of New Jersey; and an internship and
residency from 1981-84 at Jersey
Shore University Medical Center,
Neptune. His professional experiences include the aforementioned
practice; Urgent Care Center, Prompt
Medical Care, Marlboro, 1987-88;
Allied Medical Group, Jackson,
1986- 87; Instructor in Medicine,
Jersey Shore University Medical
Spring 2004
Publication of the California Lyme Disease Association
Center, 1986-87; Acting Medical
Director, Urgent Care Center,
Howell, 1984- 86; House Call
Service, Mobile Medical Practitioners, Ocean Township, 1984; and
House Physician, Freehold Area
Hospital, now CentraState Medical
Center, Freehold, 1983-84. His
professional associations include the
American College of Physicians,
American Society of Internal
Medicine, International Lyme and
Associated Diseases Society, Lyme
Coalition and Lyme Disease Association, Medical Advisory Board of New
Jersey, NJ Society of Internal
Medicine, the Medical Advisory
Board of Lyme Borreliosis Foundation, and the NJ Governor’s Council
of Lyme Disease. He participated in
research with NIH, Fox Chase,
Columbia Presbyterian, and UNDNJ.
He was a cub scout leader for Troop
117. He was a member of the Prince
of Peace Lutheran Church, Howell
and of the Latvian Lutheran Church,
New York. He was fluent in English,
Latvian, Spanish, French,
Lithuanian, and Russian. His
publications include “Lyme Disease:
Late Season Update”; Aug. 1989 and
“Borrelia Burgdorferi Specific
Antibody in Circulating Immune
Complexes in Seronegative Lyme
Disease”; Feb. 1990. In 1984 he was
certified as a diplomate, American
Board of Internal Medicine and was
affiliated with the Jersey Shore
University Medical Center, Neptune,
as an associate attending from 1986
to present. Born in Latvia, he came
to the United States in 1949. He lived
in Lakewood before moving to
Jackson many years ago.
LDA president Pat Smith, second from right, presents a flag to Emilia Eiras, widow of John
Drulle, and his daughters Lara and Natalia.
New ILADS Lectureship
Honors John Drulle
ILADS has established the John
Drulle Memorial Lectureship to
honor Dr. John Drulle, who died in
November of Lyme disease. Dr.
Drulle was involved with Lyme
disease from soon after its discovery
and was a familiar figure at conferences. He was also intimately
involved with the New Jersey Lyme
Disease Association, that is now the
national Lyme Disease Association.
Memorial donations may be made
to The Lyme Disease Association,
P.O. Box 1438, Jackson, NJ 08527.
ILADS treasurer Nick Harris,
PhD, director of IGeneX Lab in Palo
Alto, California, said the Lectureship
will provide for a keynote speaker for
future ILADS meetings and will
focus on new ideas in the treatment
of Lyme disease. A committee will
choose the yearly speaker and
provide an honorarium, transportation and plaque for the chosen
individual. Dr. Harris contributed the
first $5000 to the fund.
From the Asbury Park Press, Nov
8 2003.
“The world of Lyme lost a true
visionary and a fabulous and caring
Surviving are his wife of 20
years, Emilia Eiras, MD; a son, Jaan
Jose Drulle of Jackson; two daughters, Lara Emilia Drulle, and Natalia
M. Drulle, both of Jackson; and a
sister, Ieva Kaminski of Jackson.
Number 36
physician,” Dr. Harris said. “John
was there from the beginning. I saw
my first EM rash in his office. He
was a pioneer in the early development of the LUAT [Lyme Urine
Antigen Test] and provided most of
the patients for the first clinical
trials. What motivated John was
trying to find unique and permanent
therapies for this terrible disease.”
One colleague remembered his
unique contributions in a field
fraught with controversy and
unknowns.
“He was one of the first to come
under fire by the State,” wrote Joseph
Burrascano, MD, an ILADS member
who has been investigated by the
Office of Professional Medical
Conduct for his groundbreaking
work with chronic Lyme disease.
“John obviously resisted and prevailed. Many think of me as a
pioneer of the ‘modern view’ of
Lyme - seronegativity, persistent
Page 43
the Lyme Times
infection, need for combination
therapy, long treatment durations,”
Burrascano continued. “In fact, John,
independently of me, came to the
very same conclusions. When I gave
one of my very first public addresses
(early to mid 1980s) John attended.
Afterwards, we spent a long time
comparing notes. I learned a lot from
him, as did many.”
ILADS new president, Steven
Phillips, MD, concurred. “He was
more than a mentor to me,” he said.
“He was a superb clinician and a
human being of uncommon kindness.
I feel that his mark on this world will
forever be felt.”
LDA president Pat Smith
mourned Dr. Drulle’s death on
behalf of the patient advocacy group.
In a eulogy she wrote:
“This morning, Lyme disease lost
another great warrior, a wonderful
human being, brilliant doctor, who
put his reputation on the line for all
with Lyme disease while battling
himself with the devastating illness
which forced him from his beloved
practice of medicine a few years ago.
“Dr John Drulle, Lyme pioneer,
advocate, doctor, patient, father,
husband, board member, friend, we
loved you for what you did for the
many out there who could not fight
for themselves. You put your license
on the line and fought for all with
this disease. You beat the system
when it attacked you, and bounced
back many times to continue that
fight, all the while battling something unseen which would prove to
be more insidious than anyone could
image.
The Lyme Disease Association/
Columbia University Conference on
Nov. 14, 2003 in Philadelphia was
dedicated to the memory of John
Drulle. Drulle’s widow, Dr Eiras,
would like to continue his work in
trying to unravel the mysteries of
Lyme disease.
Memorial donations may be
made to The Lyme Disease Association, P.O. Box 1438, Jackson, NJ
08527.
Research
Foundation Licenses ARSDeveloped Tick Control Device
by Alfredo Flores
A patented device developed by
Agricultural Research Service
scientists to protect white-tailed deer
from blacklegged ticks is now being
sold commercially.
The American Lyme Disease
Foundation, Somers, N.Y., has been
licensed to produce the device, called
the "4-Poster" Deer Treatment Bait
Station, developed by ARS scientists
in Kerrville, Texas. ARS is the U.S.
Department of Agriculture's chief
scientific research agency.
The device was studied for five
years, to see if it would control ticks
plaguing white-tailed deer in the
Northeast. Blacklegged ticks, Ixodes
scapularis, and the lone star tick,
Amblyomma americanum, transmit
the bacterial agent, Borrelia burgdorferi, that causes human Lyme
disease. Each year, more than 10,000
human cases of Lyme disease are
reported in the United States,
according to the U.S. Centers for
Disease Control and Prevention.
Technician applies acaricide
to paint rollers on the ARSdeveloped four-poster device.
“...[A]fter two to three years,
use of the 4-poster technology
will control from 92 to 98
percent of the free-living tick
population around the devices.”
“The Lyme Disease Association
salutes you, John Drulle, who with
your wife Dr. Emilia Eiras, founded
our association many years ago as
Lyme disease Association of Central
Jersey, then New Jersey, now LDA.
You were there at our side in spite of
unrelenting hardship.
“You were truly an inspiration,
and we cry for you and your family.
May you finally rest in peace.”
Page 44
Spring 2004
Publication of the California Lyme Disease Association
The simple device consists of a
bin that's filled with whole-kernel
corn. Paint rollers on the four corners
of the bin are loaded with a special
formulation of permethrin that YTex Corporation, in Cody, Wyo.,
registered with the U.S. Environmental Protection Agency for exclusive
application to deer by the "4-poster."
As a deer feeds on the corn in the
bin, the animal's head and neck rub
against the permethrin-laden rollers,
which gives sufficient coverage to
protect the entire animal.
The 4-poster device offers a
viable tick-control alternative to
spraying insecticides into the
environment that might be toxic to
nontarget species. Studies by ARS
and cooperators have shown that
after two to three years, use of the 4poster technology will control from
92 to 98 percent of the free-living
tick population around the devices.
Depending on the size of the herd,
each device will treat deer on
approximately 40 to 50 acres.
Lyme disease occurs mainly in
suburban areas where there's an
overabundance of deer. The test sites
for the device were in areas where
some of the highest incidences of
Lyme disease in the United States
were found when the project started
in 1997.
http://www.ars.usda.gov/is/pr/
2004/040129.htm
Detection of Borrelia burgdorferi,
Ehrlichia chaffeensis,and Anaplasma
phagocytophilum in Ticks (Acari:
Ixodidae) from a Coastal Region of
California
KEVIN HOLDEN,1 JOHN T. BOOTHBY, SULEKHA ANAND, AND ROBERT F.
MASSUNG 2
Department of Biological Sciences,San Jose State University,San Jose,CA 95192
J.Med.Entomol.40(4):534Ð539 (2003)
ABSTRACT
A study was conducted in Santa
Cruz County to estimate the prevalence and distribution of the agents
of Lyme disease, human granulocytic
(HGE),and human monocytic (HME)
ehrlichiosis in 1,187 adult ixodid
ticks collected from eight public-use
recreation areas over a 2-yr
period.Borrelia burgdorferi the
causative agent of Lyme disease,was
detected by a polymerase chain
reaction (PCR)in 44 of 776
(5.67%)Ixodes pacificus ticks and in
3 of 58 (5.17%)Dermacentor
variabilis ticks.Anaplasma
phagocytophilum the causative agent
of HGE,was detected by PCR in 48
(6.19%) I. pacificus ticks and 5
(8.62%)D variabilis ticks.Ehrlichia
chaffeensis the causative agent of
HME, was detected by nested PCR in
just Þve (0.64%)I pacificus ticks and
Number 36
four (6.9%)D variabilis ticks.
Interestingly,eight (1.03%)I pacificus
ticks were co-infected with B
burgdorferi and A phagocyto-philum
and just one (0.12%)tick was coinfected with B burgdorferi and E
chaffeensis Less than 1% of 353
Dermacentor occidentalis ticks
showed evidence of infection with
any of the agents tested.To our
knowledge,this is the Þrst reported
identiÞcation of A phagocytophilum
and E chaffeensis in D occidentalis
ticks from California.
This study represents the Þrst
extensive survey of Lyme and the
ehrlichial diseases across multiple
areas of Santa Cruz County, and
suggests that prevalence of B
burgdorferi in Santa Cruz County
may be higher than other areas of the
state.
Bowen Lab
performs
specialized
testing
by Sandi Lanford
The Bowen Research Lab located
in Palm Harbor, Florida is a licensed
research facility approved by the
State of Florida Health Department.
The Bowen Lab was operating as a
CLIA approved lab up and until
January of last year. At that time, due
health issues and the failure to
acquire the necessary grants needed
to continue at the CLIA status, Dr.
Whitaker, director of the lab, found it
necessary to change the lab status
from a CLIA lab to a research lab.
This change did not affect the quality
of the Bowen testing, and in fact,
development phases continued like
the serial dilution ratio part of the
test, the ‘buffy coat’ in testing for coinfections, and improvements in the
methods of reporting test results.
The Q-RIBb (Quantitative Rapid
Identification of Bb) test detects the
L-Form CWD (Cell Wall Deficient
organism) of Borrelia burgdorferi (
not the spirochetes) in the blood. It
does this by using a fluorescent
staining antibody that is approved by
the FDA fir athe specific identification of the Borrelia antigen..
Dr. Mattman,1997 Nobel Prize
nominee for her work on stealth
pathogens, a colleague and co-author
of over seven published research
papers with Dr. Whitaker, has
included in her book Stealth Pathogens, 3rd Edition, digital photos
from Dr. Whitaker’s Bowen Q-RIBb
test showing the CWD organism as it
appears in the Bowen test.
The pleomorphic form of Bb
shown as fluorescent structures are
digitally photographed from blood
samples as seen through the dark
field microscope. The preliminary
test report is sent to the protocol
Page 45
the Lyme Times
physician in one to two days after
Bowen receives the blood samples.
The Q-RIBb test is positive if the
preliminary test report states,
Fluorescent Structures Seen.
The Bowen Q-RIBb test also
detect the co-infections Babesia and
Ehrichia, and if the test is positive or
negative for either co-infection it will
state so on the preliminary report.
The Bowen test for Babesia is very
accurate as the blood is spun down to
form a ‘buffy coat’, and in doing so,
the red blood cells are separated from
the white blood cells. This improves
the odds of finding Babesia, as
Babesia is only found in the red
blood cells. In addition, the Bowen
serial dilutin test gives a count of
CWD organisms in a volume of
blood. The high titer being 1:164, the
low being 1:2. A initial titer count is
beneficial as a base line. After
months of treatment a retesting can
assist the physician in the possible
adjustment of antibiotic treatment
which in lyme is an individual
adjustment.
The final Bowen report usually is
received in a week. It will show the
digital photos of the fluorescing
structures as seen in phase contrast
and as the structure appears containing pleomorphic forms. Interpretation of the Buffy Coat Smear with
Wright Geimsa Stain will also be
shown in digital photos of the Red
Blood Cells and the White Blood
Cells identifying Babesia and
Ehrlichia if these co-infections are
present.
If you have any questions please
feel free to call the Bowen Lab at
727-937-9077.
Sandi Lanford is Resource &
Public Relations Member of Board
of Directors for Bowen Research Lab
Lyme disease presenting with persistent
headache
Moses JM, Riseberg RS, Mansbach JM
Department of Medicine, Children's Hospital Boston, Harvard Medical School, Boston, Massachusetts
32115, USA.
Pediatrics. 2003 Dec;112(6 Pt 1):e477-9.
Increased intracranial pressure in
patients with Lyme disease is an
uncommon but reported finding. We
discuss 2 patients from Lyme
endemic areas who initially presented with headache, nausea, and
vomiting and were eventually found
to have increased intracranial
pressure, a mild cerebrospinal fluid
pleocytosis, and positive Lyme titers.
It has been shown that increased
intracranial pressure in association
with neuroborreliosis can lead to
blindness. In endemic areas, it is
important for practitioners to
consider Lyme disease when patients
present with persistent headache,
especially in those who have evidence of increased intracranial
pressure.
Page 46
The researchers concluded: “A
high index of suspicion is frequently
needed to diagnose Lyme disease,
and practitioners should consider the
diagnosis when patients present in an
endemic area between the late spring
and early fall with severe persistent
headache, especially if they have
evidence of increased intracranial
pressure. Patients may need aggressive clinical management given that
blindness has occurred.”
The full text article is available
by going to http://
pediatrics.aappublications.org/cgi/
content/full/112/6/e477
The western blacklegged tick, Ixodes
pacificus, in the
Sutter Buttes.
Wright SA, Lemenager DA,
McBride RL, Brown DA.
Sacramento-Yolo Mosquito and Vector
Control District, 8631 Bond Road, Elk
Grove, CA 95624, USA.
J Vector Ecol. 03 Dec; 28(2): 171-4
The western black-legged tick,
Ixodes pacificus, was collected from
Huff Canyon in the Sutter Buttes in
north central California, Sutter
County. The Sutter Buttes are within
the Sacramento Valley and outside
the normal distribution of I. pacificus
in California. Adult I. pacificus were
collected via flagging as they quested
along deer trails; subadult life stages
were collected from three species of
lizard, Elgaria multicarinata,
Sceloporus occidentalis, and S.
graciosus. Adult ticks were tested for
the presence of spirochetes using the
standard IFA with a monoclonal
antibody specific for OSPA.
Of the ticks tested, 3.3% were
identified as positive for the presence
of the spirochete Borrelia burgdorferi.
These results present the first
published account of Ixodes pacificus
as well as the first detection of B.
burgdorferi in the Sutter Buttes,
Sutter County, California.
From http://www.co.sutter.ca.us/
County of Sutter is a major
agricultural center located in
Northern California with its southern-most border lying approximately
10 miles north of the State Capitol,
Sacramento. Bounded by the
Sacramento and Feather Rivers, the
County encompasses 607 square
miles and provides easy access to
the Lake Tahoe and San Francisco
areas. Mountains and lakes offering
unlimited recreational opportunities
are abundant.
Spring 2004
Publication of the California Lyme Disease Association
Conferences
LDA Conference Report
by Harold Smith, MD
LDA president Patricia Smith
opened the conference with a
summary of accomplishments of the
LDA, its affiliates, notable individuals such as author Amy Tan, and
Columbia Presbyterian College of
Physicians and Surgeons. $1.2
million, for example, has been raised
toward the $3 million goal to start
a chronic Lyme Disease center at
Columbia. LDA is funding
research in genomic mapping of
Borrelia burgdorferi (Bb).
their hosts. What is waste for one
organism becomes food for the next
in an interdependent system that has
become stable for thousands of years.
Thus it is important to follow the
map toward metabolic activities as
much as genomic data in detecting
what is a healthy balance versus
In contrast to what has been
accomplished, Pat described the
tremendous burden to the public
from Lyme Disease with over
250,000 new cases each year, yet
government funding is only $8
million. Any map to the future
certainly needs some major
interstate highway construction
planning and funding to reach
public goals.
The conference was dedicated
to Dr. John Drulle, clinician,
researcher, father and victim of
Lyme Disease who died just before
the conference [see page 49].
Since in his life work Dr. Drulle
was a pioneer in tickborne diseases,
exploring the cutting edge of both
diagnosis and treatment, it was
fitting that Dr. Ken Nealson be the
lead speaker. Recently chairing the
geobiology division of University of
Southern California, Dr. Nealson is
also a member of the Space Science
Exploration Committee (Congressional Committee) and of the NASA
Mars Exploration Science Working
Group. He discussed his work in the
complex microbiological systems that
tie together mineral-microbial worlds
( “germs that eat rocks”),
prokaryocytes and eukaryocytes with
Number 36
unhealthy. Dr. Nealson had so much
fascinating information that was new
to the audience that he needs to be
invited again. One message was clear
however – ecosystems of microorganisms and hosts are so complex that it
is foolish to think that one test, one
manifestation, and one cure to an
unhealthy balance in the host is an
effective path to follow. Dr. Drulle’s
presence could be felt here.
Dr. Stephen Shutzer followed
with the first Dr. John Drulle
Memorial Lecture. He is an Associate
Professor of Medicine at the University of Medicine and Dentistry in
New Jersey. Dr. Drulle and Dr.
Shutzer had collaborated over a
decade ago on detecting immune
complexes in Lyme Disease and
studying their significance. Dr.Drulle
had felt that “seronegative” patients
were not truly negative but were
being missed by testing that only
probed for free or non-complexed
antibodies. Dr. Shutzer summarized
their results demonstrating that
immune complexes of specific
antibody and Borrelia antigens were
indeed present in patients labelled
seronegative by more commercially
friendly methods as well as in early
erythema migrans, as well as in
traditionally seropositive patients.
Recovered Lyme patients were
free of immune complexes.
Dr. Shutzer went on to
describe how Borrelia upregulate
and downregulate certain genes.
Examples are Osp C switching
with Osp A as a later manifestation in chronic active Borrelia
infection in some patients.
Consequently, directions in future
research need to combine genomic
paths with expressed products of
the genes to understand the illness
that is chronic Lyme Disease. A
number of attendees questioned
why more work has not been done
utilizing immune complex
probing to answer questions about
seronegativity, the accuracy of
commercial laboratory serology
kits, persistence of infection after
antibiotics or even which are the
best antibiotics. Dr. Schutzer parried
that clinicians should be the motivating and organizing force for such
research. Definitely a nod to
Dr.Drulle.
Next University of Utah professor
Sherwood Casjens, PhD, presented
work on the Bb Lyme agent genome.
Dr. Casjens has extensive experience
in the field of genome research and is
an advisor to the National Center for
Biotechnology Information’s Viral
RefSeq Genomes Database. The
complete sequence of DNA in the
B31 strain has been determined. In
addition to linear chromosomes, B 31
carries 21 linear or circular plasmids
Page 47
the Lyme Times
which are likely originally bacteriophages (bacterial virus). This is
three times the number in any other
bacteria known. Bb is metabolically
deficient alone without the host. Bb
spends much more of its genetic
energy on expressing outer surface
proteins via these plasmids, which
are important in determining
outcomes in interacting with the
host. Dr. Casjens’ recent work found
that most B31 plasmid genes are
found in other Bb strains. Since these
plasmids are relatively stable in
structure and universally found, it is
thought that they are critical to the
survival of Bb. On the other hand,
there are differences in plasmid
products that may determine virulence. Strain 297 is quite neurologically virulent in humans, and B31
commonly used in commercial test
kits, is very infectious in mice. In
addition, Dr. Casjens pointed out that
Bb is actively evolving with ongoing
changes in plasmid structure.
If attendees were more hungry for
some clinical relevance at this time,
Dr. Judit Miklossy provided it with
her reseach in the association of
dementia, cortical atrophy, and
amyloid deposition in three patients
with AD. Dr. Miklossy is an Assistant Professor on the Medical Faculty
of the University of Lausanne in
Switzerland who is currently doing
research at the Center for
Neurovirology & Cancer Biology of
Temple University in Philadelphia.
Using multiple direct and indirect
laboratory tests such as direct
detection of Borrelia antigen in brain
tissue of the patients-colocalized with
bacterial peptidoglycan and beta-
Author Amy Tan
with researchers
Stephen Schutzer
, MD (L) and
Sherwood
Casjens, PhD (R)
amyloid, Dr. Miklossy presented
convincing clinical evidence of the in
vitro work by others that OspA from
Bb is amyloidogenic. The fact that
the one control forrester had some
positive testing for Borrelia but was
asymptomatic was interpreted by Dr.
Miklossy as supportive of evidence of
the long latency between primary
infection in high at risk patients and
later manifestations of tertiary
neuroborreliosis. Her work was so
thorough that although there were
only 3 test patients and one control,
it was difficult not to view Borrelia b
as pathogenic in dementia with
cortical atrophy and amyloidosis in
some patients.
The morning ended with comments from the famed Dr. Paul
Duray, the NIH pathologist who
detailed much of the gross and
microscopic surgical pathology first
described in the 1980s. He continued
his earlier findings with notes that
the key surgical path finding is
perivascular plasma cells deep in
tissue samples. In the brain tissue a
microgliosis develops which has been
found with Borrelia spirochetes.
Without the spirochetes, Dr. Duray
thought the perivascular collection of
plasma cells and lymphocytes
indicated molecular mimicry as a
pathological pathway and was
evidence against a viral factor. He
described proliferation of papillary
projections in chronic synovitis of
Borrelia in joints and that these
could keep breaking off forming
loose bodies or “joint mice.” In the
peripheral nervous system, Bb caused
a ganglionitis similar to the lightening pains of tabes dorsalis- a dreaded
complication of later stage syphilis.
Next Dr. Duray described more
recent testing for Bb by culture, not
in a fluid medium but in a tissue
medium derived from human
tonsillar tissue. In tissue media in a
rotating bioreactor the number of
spirochetes exceeds that produced by
inoculation of experimentally
immunosuppressed mice. Dr. Duray
LDA team organized the Philadelphia conference: Left to right:
executive vice president Pam
Lampe; secretary Ruth
Waddington; board member Kim
Uffleman ; Corey Lakin, technical
vice president; Colleen Smith,
registration; and LDA president
Pat Smith.
Page 48
Spring 2004
Publication of the California Lyme Disease Association
closed by informing the audience that
he was leaving the National Cancer
Institute in Bethesda for a Veterans’
Administration opportunity near
home in Boston. It was unclear if he
would do further Borrelia research or
not.
allowed to change depending
on what was thought to be
measured. It could be an 8inch ruler when positive if
Borreliosis was less likely
clinically and then a 12-inch
ruler if positive and the patient
thought more likely to have
The afternoon conference began
Borreliosis. If this is confusing
with Dr. Paul Fawcett’s description
to readers and attendees, Dr.
of laboratory-based tests for Lyme
Fawcett reassured them that in
Disease. Dr. Fawcett is a Senior
his lab the serologically
Research Scientist and Head of
Immunology Laboratories at Alfred I. positive patients always get
Tan with Tom Grier, from the Minnesota Lyme
better with antibiotic treatment Amy
DuPont Hospital for Children in
Disease Coalition.
and the serologically negative
Wilmington, Delaware. Many of the
patients don’t get better with
audience it still seemed more logical
flaws involved in using antigens to
antibiotics.
Some,
recalling
Dr.
to use laboratory antibodies to probe
detect antibodies to Bb in the patient
Shutzer’s earlier presentation of
for specific antigens in the patient
rather than laboratory antigens to
probe for antibodies in the patients.
At least finding antigens in the
Borreliosis can cause vascular edema, gliosis,
patient would be not only as specific
but also evidence of active infection.
ischemic infarcts, perivascular water,
Dr. Fawcett’s comment was that both
inflammation or demyelination.
methods suffer similar flaws but that
detecting antibodies is more “popuCarolyn Britton, MD lar.” The audience was left with the
Columbia University nagging suspicion that if both
techniques are founded on the same
principle and methodology – the
may not have been news to the
serologically negative patients
faithful and specific binding of
attendees. These flaws include, but
actually being immunologically
antigen to antibody – and if both
are not limited to: loss of sensitivity
positive when antibody bound to
have similar flaws, but the antigenas specificity is favored, questionable
antigen in complexes was assa,yed
binding test is superior in supporting
proficiency samples, and throwing
may have been more uncomfortable
a finding of active infection, the only
away 90 of the 100 antibodies known
than with using a ruler that could
reason for the “popularity” of
to occur in Borreliosis.
change with what was being meainexpensive methods in ELISA
sured.
Dr. Fawcett did, however,
screening exclusive of other testing is
impress many with his observations
It seems logical that Dr.
that they are preferred by managed
that present gel electrophoresis in the Fawcett’s seronegative patients
care and insurance companies.
Western blotting is sloppy – never
would be a mix of truly non actively
If Dr. Fawcett is to be applauded
really matching the test strip from
infected patients and other patients
for
tackling a hard-shelled problem
the patient with the control and even
who had no excess free antibody
in
laboratory
testing, then neurolorepeat testing in the same lot yields
(seronegative) but were actively
gist
Carolyn
Britton,
Associate
at least a 5mm spread. In addition,
infected for two reasons: first, the
Professor
of
Clinical
Neurology
at
band 41, representing flagellar
antibodies were bound to antigen in
Columbia,
received
even
louder
antigen, which Dr. Fawcett states is
blood and tissue and the patient
so common in his laboratory that it is
suffering from a larger bacterial load. applause for tackling MRI white
matter hyperintense (wmh) lesions in
present 100% of the time in
Secondly, the patient was immunoBorreliosis, MS and other causes.
Borreliosis, never shows up in the
logically suppressed or more neuroThe pathological basis of wmh is
same spot. These weaknesses in
logically involved than
astrocytocis (basically growth of the
serology need to be balanced by
rheumatologically. And a different
determining if the test results are
antimicrobial protocol may have been fibroblastic cell line) combined with
necrosis. Dr. Britton stated there is a
clinically relevant.
successful in his “seronegative”
wealth of information from finding
patients. Given the flaws and
For some attendees there was
wmh in a patient, but even more is
similarities in various serological
likely again an uneasy sense that the
the profundity of resulting questions.
testing protocols, to some in the
tool, for example a ruler, was being
Number 36
Page 49
the Lyme Times
LDA vice president for technology Corey
Lakin with Author Amy Tan and her service
dog, Mr. Bubba, at the LDA conference in
Philadelphia. Among their other duties, Mr.
Bubba and Ms. Tan’s other Yorkie do room
searches on cue and bark only if someone
barges into the room without knocking. The
dogs wake Ms. Tan up when she doesn’t
hear the alarm. They have helped pull off
clothes when she could not move her arm.
Mr. Bubba attended the conference in a
small carry case and was only seen in
public on rare occasions.
One helpful answer was that these
bright signals can occur at a baseline
frequency that increases with age. If
the MRI findings exceed this level,
then they can represent vascular
edema, gliosis, ischemic infarcts,
perivascular water, inflammation or
demyelination. Borreliosis can cause
all of these! Dr. Britton gave a
differential diagnosis list to be
considered whenever significant
wmh were found. (cerebrovascular,
infections, MS, sarcoidosis, ADEM,
subacute sclerosing panencephalitis
or JC disease, major depression,
neoplasms to toxic injuries). There is
a tremendous overlap of lab findings,
MRI results and clinical manifestations in Borreliosis vs. MS and
sometimes more than one condition
exists. Out of this confusion Dr.
Britton offered that in MS two or
more wmh were > 30d and visual
evoked potentials had delayed but
well preserved waveforms as described by McDonald in An Neurol
50:121-127. In addition, work by
Morgen et al. revealed that magnetization transfer abnormalities occur in
MS but not in Borreliosis. Dr
Britton’s presentation was excellent
in objectivity in a confusing clinical
world.
Brian Fallon, MD, MPH, MEd,
Director, Lyme Disease Research
Program, New York State Psychiatric
Institute and Associate Professor of
Clinical Psychiatry at Columbia
Page 50
University College of Physicians and
Surgeons, addressed the question,
“Does Lyme Disease really cause
psychiatric problems?” The audience
likely wondered whether there really
was any question here. Dr. Fallon
harmonized with historical details,
outlining Sven Hellerstrom’s first
association of psychosis with
erythema chronicum migrans in
1930, medical reports of depression
in 39% of patients in early Lyme
disease and observations that
psychiatric manifestations can occur
with no other recognized systemic
signs of disseminated Borreliosis.
How ill are these patients?
Dr. Fallon compared their pain,
fatigue, duration of illness, disability
and years of treatment to post
surgical pain, MS, and chronic heart
failure in published studies. The
recognition of how common these
neurological and psychiatric problems really are has been severely
hampered by skewing most studies to
patients with major arthritic manifestations as a requirement for inclusion. Many think it would be better
to be more inclusive when defining
populations to study since so many
paralimbic (emotional) areas in the
brain are involved in Borreliosis as
well – areas such as memory and
learning (carrying out brain functions while at the same time keeping
the rules of the task in constant
attention, i.e., perhaps Dr. Krum’s
past lectures directing using reverse
alphabet subtraction as a meaure of
executive dysfunction in Borreliosis).
Other paralimbic areas are responses
to sensory stimuli (often heightened),
control of visceral states or autonomic functions, coordination of
immune-endocrine function, and
even perception of taste. A possible
mechanism introduced by Dr. Fallon
was that cytokines increased by
persistent infection resulted in
decreased hydroxytryptophan and
falls in serotonin production,
ultimately resulting in increased
kyrurenic acid and quinolenic acid
production in the brain – both of
which have noxious effects on brain
function. Dr. Fallon closed by
drawing lines from the manifestations column to the pharmaceutical
treatment column: fatigue –
modafanil and buproprione, loss of
interest and sleep – SSRIs, effexor,
remeron, tcas; sensory overload –
clonazepam, gabapentin; pain – tcas
and anticonvulsants; psychological
stess with education and support.
Next, internist Joseph
Burrascano, Jr., MD, of East Hampton, Long Island, NY, utilized a new
Mitchell Hoggard gave an overview of
antibicrobial agents. Treatment failures
have been documented for every combination used so far, he said.
Spring 2004
Publication of the California Lyme Disease Association
Left to right: Janet Vaccaro,
Time for Lyme (TFL); Lorraine
Johnson, Califorrnia Lyme
Disease Association; Diane
Blanchard, TFL; Ruth
Waddington and Corey Lakin,
LDA; and Debbie Siciliano, TFL
enjoy socializing during the
LDA conference.
computerized reporting system to
study patient records of chronic
Borreliosis patients which enabled
him to test over 53,000 data points
on a review of 42 patients with
chronic Borreliosis who were treated
6 to 24 months. In another study of
200 patients fatigue was present in
186/200. In his review of testing
only 17% of patients were positive in
all tests. Lyme Western Blots were
CDC positive 27% and equivocal
13%. Lyme PCR was 19% positive.
Looking at positive MRI studies he
found only PCR positive patients
were also MRI positive. When CD57 counts were normal, his patients
were doing well. When PCR positive, the CD-57 count was always
low. Another major area of interest
was to correlate brain SPECT scan
pictures with Borreliosis confirmed
by positive PCR testing. Six of his
positive PCR patients had homogeneous hypoperfusion on SPECT
scan. From these data, patients with
Borreliosis can have either the
touted heterogeneous pattern OR
homogeneous. Homogeneous
patterns do not exclude Borreliosis
from consideration.
Pituitary involvement in Lyme
Disease was not reported upon by Dr
Springer who could not attend.
Number 36
Chico, California, pharmacist
Mitch Hoggard RPH (see photo at
left), also owner of Chico Hyperbaric
Center, followed with an excellent
overview of antimicrobial agents
used in treating Lyme Disease. Basic
principles were that Borrelia utilized
methods of immune evasion such as
quorum sensing (population densities
of Borrelia send messages to genetic
coding systems to upregulate or
downregulate protein manufacturing). Borrelia is extremely adaptable
and this is why antimicrobials often
are only partially effective. Consequently, there are no conclusive
evidence-based studies that demonstrate the best protocol for
Borreliosis. Treatment failures have
been documented for every combination used so far. Dr. Hoggard then
described in detail features of the
tetracyclines, macrolides, metronidazole, cephalosporins, fluoroquinolones, and carbapenems
important in attacking Borrelia
infection.
Dr. Martin Fried, Director of
Pediatric Gastroenterology and
Nutrition at the Jersey Shore Medical
Center, wrapped up the day with a
review of his work in children with
multiple chronic infections causing
abdominal pain most frequently (52/
80patients), followed by blood in
stool 16/80, reflux 4/80, celiac 3/90,
Crohn’s 2/80 and ulcers 2/80. Single
infections were present in 30 patients
with frequencies in order of Bartonella, Helicobacter, Mycoplasma
and Lyme. Three coinfections were
found in 8% and two in 24%. Of
coinfected patients, 6 were coinfected
with Lyme.
Dr. Fried gave more in depth
reporting on his findings of how
significant Bartonella was. Patients
usually had a cat scratch or tick bite,
no prior GI complaints, no steroid
use, no abrupt weight gain and often
a linear classic red streaking of the
skin. These linear rashes were not in
tissue planes and on biopsy had a
vasculitis with endothelial proliferation. Other bartonella rashes were
flat, urticarial, erythema nodosum,
granuloma annulaire and
throbocytopenic purpuric.
Neovascularization and inflammation were common features and
thought to be secondary to
interleuken 6 production. Dr. Fried
assessed his patients with CT of the
abdomen, endoscopy and biopsy. He
relied on PCR DNA testing to
identify each pathogen.
Bartonella gave a chronic
gastritis or duodenitis on microscopy
Page 51
the Lyme Times
at positive PCR sites without ulcers,
eosinophils or acute infllammation.
In summary, he found a rising IgG
titer to Bartonella was helpful but
IgM was rarely detected. There were
complications of the GI inflammation
with Barrett’s esophagus (metaplasia
of columnar epithelium replacing
normal squamous at GE junction),
strictures, and hemorrhage occuring
in that order. In treating GI Bartonella infection in children he
favored a combination of proton
pump inhibitor and combined
doxycycline and zithromax . He
thought a PPPI blocked germ escape
and it died with cell death.
Dr. Fried further described
Helicobacter pylori infections in
children. It causes gastric and
duodenal ulcers, is a lifelong infection unless treated and predisposes to
stomach cancer. Again, a combination of antimicrobials of amoxycillin
and clarithromycin for two weeks
with a proton pump inhibitor for one
month was thought to be effective
treatment.
of detection. Mycoplasma stimulates
inflammatory cytokines such as TNF
and IL 6 and is chronic due to
antigenic surface variation, intracellular location, slow growth and
immune suppression. For treatment,
again he favored PPIs and combined
antibiotics of doxycycline and
zithromax. In response to a question
of why children get dysmotility with
these infections, Dr. Fried thought it
was likely due to a neuropathy
associated with these infections.
By the end of the conference, an
outside observer understood that
chronic Lyme Disease/Borreliosis
entailed a much broader view than
that of a simple extracellular microbe
acting alone to target articular tissue.
All of the lecturers combined the
complexity of the disease known as
Lyme Disease into multiple microbes, even rock-eating microbes,
often not easily detected by single
antibody probes, living intracellularly in interdependent sensing
modes, evading host immune system
as parasites do best, and manifesting
in multiple ways from psychiatric to
gastrointestinal. Pat Smith closed
with a call to a national educational
and funding program to match the
complexity of the spreading infection.
Dr. Smith practices medicine in
Pennsylvania.
New York physician Ken Liegner, center, and the band Primitive Soul provided free
entertainment for the reception after the LDA conference. Primitive Soul just released a
new CD.
Lastly, Mycoplasma infections
were highlighted as intracellular,
rarely in blood, causing a worsening
of Lyme and Bartonella symptoms
and commonly causing fibromyalgia
and CFS. PCR was the best method
DVD, Online
Videos available
Joseph Burrascano, MD, East
Hampton, New York, internist and
Robert Bransfield, MD, Red
Bank, New Jersey, psychiatrist
discuss Lyme disease.
No other formats are available.
Please send your name and
address and a $15 check or
money order payable to LDA to:
Lyme Disease Association
PO Box 1438
Jackson NJ 08527
Videos for Educators may be
accessedonline at http://
www.lymediseaseassociation.org/
tflvideo.htm
Page 52
ILADS 2003 Annual Convention
A report on some highlights of the ILADS annual convention held in
Philadelphia on November 15, 2003
Keynote Speaker
The keynote speaker was bestselling author Ms. Tan Tan. After
years of misdiagnosed symptoms,
and even the removal of one adrenal
gland, she read about Lyme disease
and was finally diagnosed. Her
symptoms included visual and
olfactory hallucinations, anxiety,
paranoia, and agoraphobia. She
became so disoriented that she did
not leave her house without her welltrained Yorkshire terrier, who could
always find the way home. (The dog
is so tiny that Ms. Tan carries it
around in her purse; it was her
constant companion for the entire
day of lectures, never once emitting a
sound.) She was misdiagnosed by ten
physicians, one of whom told her she
was experiencing “normal aging”
(she was 49). No one thought to test
her for Lyme disease, although she
was tested for syphilis (a spirochetal
relative of Lyme), in spite of a
history of tick bite and visits to other
endemic areas.
Spring 2004
Publication of the California Lyme Disease Association
“Doctors might just have decided
I was an unhappy housewife seeking
attention, but because I am a celebrity, I was believed,” Ms. Tan said.
She found her doctor by doing a
Google search for “San Francisco
and Lyme,” and is now significantly
better on oral antibiotics. Her
struggle is entertainingly described
in a chapter of her most recent book,
The Opposite of Fate.
Which treatments work best
James Mr. Hennig, RPh,
Director of Pharmacy at Home Care
Services in New Jersey, talked about
pharmacokinetics and pharmacodynamics of combination drug therapy
in the treatment of Lyme disease.
Many drugs are useful, including
anti-inflammatory agents, muscle
relaxants and antidepressants. A
number of antibiotics are used, for
example penicillins, cephalosporins,
tetracyclines, macrolides. Doctors
who consider patient compliance and
quality of life may prefer once-a-day
administration allowed for some
agents since the patient is able to
return more quickly to a normal
lifestyle.
All drugs have different kinetics
that must be considered by the
physician. Some are excreted by the
kidneys (penicillin, tetracyclines) and
should be avoided in cases where
there is any renal compromise. Some
penetrate better into bone (cephalosporins) and the central nervous
system (cephalosporins, tetracyclines). Macrolides have the advantage of high intracellular penetration.
Oral and IV penicillins need frequent
administration, but intramuscular
administration allows more prolonged absorption.
All drugs have side effects.
Tetracyclines for example cause
photosensitivity in some individuals
and may not be suitable for people
with an outdoor lifestyle. Prolonged
use of tetracyclines may cause
pseudomembranous colitis, a serious
complication, liver toxicity, and
anemia. On the other hand, doxycycline, one of the tetracycline family,
Number 36
is also thought to have anti-inflammatory properties, which make it a
good choice for musculoskeletal
problems. Macrolides also may cause
pseudomembranous colitis.
Drug interactions must be
considered; macrolides for example
may potentiate oral anticoagulants.
Tetracyclines are not recommended
for children, and some drugs have
not been studied in children.
There are new studies being done
on ketalides, a new type of “super”
macrolide. In response to questions
from the audience, Mr. Hennig
mentioned that Questran
(cholestyramine) absorbs vitamin K
and perhaps other vitamins. Patients
being treated with Questran should
receive adjunctive vitamin K.
Mr. Hennig may be contacted at
732-906-9201 or by email at jMr.
[email protected].
Dr. Greg Bach of Pennsylvania
proposed that the diagnosis of
Amyotrophic Lateral Sclerosis (ALS
or Lou Gehrig’s disease) is often
actually just Lyme disease. He noted
that Lou Gehrig’s favorite vacation
spot was Lyme, Connecticut. Dr.
Bach showed a video with before
and after footage of two patients.
Physicians at Johns Hopkins had
given the first, a young man with
weakness and paralysis of the throat,
three months to live based on a
diagnosis of ALS. At the time he saw
Dr. Bach , he had been given a
feeding tube in his stomach and was
scheduled for a tracheotomy. Dr.
Bach noticed an erythema migrans
rash on the patient’s head. After
treating him with antibiotics, Dr.
Bach was able, after about six
months, to remove the feeding tube.
Not only was the patient’s swallowing almost back to normal, but he
had recently become a father for the
first time. In a dramatic appearance,
the young man, who was in the
audience, strode up to the microphone and publicly thanked Dr. Bach
for saving his life.
The second patient appearing on
the video was a woman who ap-
peared to have severe neurologic and/
or mental deficits. She looked
depressed, confused and dazed, and
was unable to talk, so her husband
conducted the on-tape interview,
casting anxious glances at his wife as
he described her symptoms. Amazingly, psychiatrists had decided she
was “attention-getting” in spite of the
fact that her seizures often occurred
in the middle of the night. Dr. Bach
said after two days on penicillin she
experienced a dramatic improvement, and the “after” videotape
showed an obviously vibrant,
intelligent woman who was able to
speak normally.
Dr. Bach derided the cookbook 3
to 6-month treatment for everyone
and termed testing “prehistoric.” He
uses IGeneX Lab in California for
DNA testing, western blots, and the
Lyme Dot Assay (LDA- a proprietary
urine test). It is important to test and
treat for coinfections and parasites,
Dr. Bach concluded.
Pennsylvania physician Harold
Smith, MD, spoke Antibiotics alone
may not be sufficient to return
infected individuals to health, he
stated. The microbes causing chronic
tick-borne diseases are parasites that
try to control host behavior/physiology for the parasites’ benefit, and
these changes must be detected and
addressed. Dysregulation of HPE
axes is one of the mechanisms
utilized by the microbes.
Hypothalmic-pituitary endocrine
dysfunction is common in patients
with Chronic Fatigue Syndrome and
Lyme disease.
Smith presented the results of
practical testing and treatment of
identical hormone response abnormalities in a group of 50 chronic
Lyme disease patients. He found that
hormone levels are interdependent –
if one is low, all others dependent on
that one will also be low. Levels can
be extremely variable over time. He
found a bell-shaped distribution
curve; if the patient was in the low
quartile of in the 1-2 percentile, he
looked farther. Forty of 50 patients
Page 53
the Lyme Times
were in the lower ranges for multiple
hormones. Testosterone, for example,
averaged 260 (300-1000 is
normal).men/women?
Dr. Harold Smith started his
lecture about hypothalmic-pituitary
endocrine (HPE) axis dysregulation
in Chronic Lyme Disease (CLD) by
referencing studies from chronic
fatigue syndrome (CFS) and teaching
conference material from Dr. Eugene
Shippen of Reading Pennsylvania. In
CFS, Borreliosis is one of the leading
bacterial causes. CFS commonly has
associated hypothalamic pituitary
endocrine (HPE) dysfunctions. Dr.
Shippen’s courses and published
books teach practical means to
evaluate, test for, treat, and follow
HPE axis dysregulation.
Dr. Smith presented the results of
testing for HPE axis dysregulation in
a group of diagnosed chronic Lyme
Disease with chronic fatigue as a
major manifestation. Patients were
tested for DHEA unconjugated, total
and free testosterone, LH, IGF-1,
prolactin, FSH, estrogens, progesterone, TSH, free T3, total T4, cortisol,
PSA, and response to HGH stimulation tests in a gender based grouping
appropriate for bio-identical hormone
supplementation. The most common
patterns were low DHEA, low total
or free testosterone, low LH, low IGF
1, low estrogen or progesterone
levels and higher FSH in an early age
menopausal pattern and normal
cortisol levels. HGH stimulation tests
were frequently blunted in those with
low IGF 1 levels.
There is a large overlap of
clinical symptoms and signs in this
patient group with only a few being
markers of expected specific deficiencies. Principles of bio-identical
hormone supplementation were
followed.
Treatment resulted in laboratory
confirmed improvements in hormone
levels and clinical parameters while
being treated for chronic infections
simultaneously. There were no
significant side effects. Some patients
maintained good function as their
Page 54
treatment of chronic tick-borne
diseases was ended and the hormones
were titrated downwards. Other
patients, particularly older male
patients and female patients with
severely low entry levels of hormones, continued hormone supplementation because it continued to
improve their quality of life.
In conclusion, Dr. Smith pointed
out that HPE axis dysregulation is
not uncommon in CLD. Discovering
these deficiencies which are interdependent and spiking feedback
responses requires looking beyond a
patient simply being in the “normal”
ranges for these hormone levels.
Consequently, patients who are in
the lower quartile for age are good
beginning points to look for clinical
and laboratory responses to bioidentical hormone supplementation.
Dr. Smith closed with intellectual
nods to Spiderman and how insect
bites can lead to control of human
behavior by the genetic material in a
fictionalized spider. He hoped with
guest speaker Ms. Tan Ms. Tan that
the arts might lead the lagging
sciences in recognizing how tick
bites with their passage of microbes
can lead to control of human hosts by
interfering with the HPE axis.
Unfortunately the reality “tick man”
or “tick woman” gets only the
increased sensory input condition
without the increased rest and motorenergy output augmentation that
benefits the imaginary Spiderman.
“Maybe it’s better to get the genes
without the germs,” Dr. Smith
quipped.
Connecticut physician Steven
Phillips, MD, covered the epidemiologic, clinical, and microbiologic
evidence supporting a link between
infection with B. burgdorferi and
several disease states which have
been, to date, largely described as
primary auto-immune and/or
idiopathic neurodegenerative
diseases.
Epidemiological studies show
that multiple sclerosis (MS), for
example, considered by many to be a
primary autoimmune disease,
displays the epidemiologic features of
an infectious disease. It manifests
predominantly in people who have
spent some years between the 28th
and 52nd parallel. Further to this, MS
frequently occurs in clusters and has
even occurred in epidemics. Indeed,
there was no MS in the Faroe
Islands before the British occupation
(Kurtzke). Shortly thereafter,
a major outbreak followed.
Dr. Phillips enumerated a list of
scientific studies beginning from the
early 20th century to present day that
supported the connection between
various infections and MS, as well as
other, putative “autoimmune”
diseases. In the case of MS, a whole
laundry list of potentially
causative pathogens have been
studied, but none has been conclusively proven as the cause of MS.
Dr. Phillips demonstrated
through a careful review of the
medical literature, that B. burgdorferi infection was the most likely
causative factor in the development
of this illness. He compared the
indistinguishable clinical features of
MS and Lyme disease, and reviewed
published studies documenting
borrelial infection by culture from
MS patients’ spinal fluid, as well as
increased rates of Lyme seropositivity, although the latter of the two
findings has been disputed in other
studies, likely due to the high rates of
inter-laboratory variability in
serologic testing.
Dr. Phillips pointed out that
although ticks that feed on the blood
of infected hosts become rapidly
infected with B. burgdorferi, the
relatively large Lyme bacteria not
only cannot be visualized in blood
smears, they also cannot be cultured
from the blood of patients, even from
morbidly ill patients, with the most
commonly used culture media such
as BSK-H. Logic dictates that B.
burgdorferi is present in the blood in
altered forms, he explained.
Test tube strains of B.
Spring 2004
Publication of the California Lyme Disease Association
burgdorferi in BSK-H
medium shows spheroid forms, but
these have been largely ignored by
some microbiologists. Scientists
speculate that these altered forms,
called “spheroplasts” are an adaptation that permits the spirochete to
survive in the hostile environment of
the mammalian immune system.
They can appear as cysts (a ball
which contains spirochetes inside
when young, and a dense core as it
gets older), granules (tiny fragments), or other variants, and within
certain parameters can revert back to
their helical shape. Their virulence
has been established by inoculation
studies of mice. Their existence may
explain PCR negativity and antibiotic
resistance, and be an important factor
in the persistence of Lyme.
of patients with diagnoses of various
inflammatory arthritis syndromes
and a weakly reactive Lyme ELISA,
but a negative Western Blot,
Caperton treated 60 patients with
ceftriaxone. Improvement was seen
in 42% of patients with rheumatoid
arthritis; 63% of patients with
arthritis attributed to psoriasis; 60%
of patients with arthritis attributed to
vasculitis; and 42% of patients with
chronic inflammatory arthritis. Only
10% of patients on placebo showed
improvement [Arch Int Med
1990;150(8)].
Spheroplasts lack a cell wall, and
do not display ospA on their surface,
hence are unrecognizable to the host
immune system. They can be
extracellular or intracellular,
infecting endothelium, fibroblasts,
lymphocytes, synovium, and other
cells. Dr. Brorson has found that B.
burgdorferi spheroplasts are vulnerable to metronidazole (Flagyl) as
well as hydroxychloroquine
(Plaquenil).
In the Q&A period, Jyotsna Shah,
PhD, Vice President of IGeneX Lab
in Palo Alto, California, confirmed
that the genetic material in other
bacterial cysts commonly shows
differences, and could explain
negative results on PCR testing of Bb
cysts. She added that it is difficult to
culture L-forms.
Blebs are another form associated
with spirochetes. Appearing under
the microscope as irregular spherical
bodies, blebs contain incomplete
complements of spirochetal DNA
and are produced when Bb is under
stress. They can be incorporated into
cells, including dendritic cells, which
then become targets of lymphocytes.
This may in part explain the secondary auto-immune phenomena
frequently seen in Lyme disease.
Figueroa has documented immune
suppression and Dattwyler has
shown humoral overstimulation and
depression of cellular immunity
associated with infection with Bb.
Scientists suspect rheumatoid
arthritis has an infectious etiology.
Other so-called “autoimmune”
diseases may as well. In a published
double-blind placebo-controlled study
Number 36
Dr. Philips ended on an ominous
note: “We have found Bb cysts in
uncultured semen, but we have only
examined samples from 2 patients
and we don’t know if these quantities
are sufficient to be infectious.”
New Jersey rheumatologist
Andrea Gaito, MD, lectured on
Autoimmune Provocation in Lyme
Disease; The Role of TNF inhibition.
She noted that Lyme and autoimmune disorders can be comorbid
conditions. Antigens present on the
surface of Borrelia stimulate cytokine
production. Cytokines regulate
cellular function and enhance the
immune response. The major
cytokines involved in Lyme mediated
autoimmune processes are the
proinflammatory cytokines, Tumor
Necrosis Factor (TNF) alpha and
interleukin (IL-6). Many studies
show that a massive release of TNF
is responsible for J. Herxheimer
reactions following antibiotic
treatments. TNF can be quantifiable
and proportional to the severity of
the Herxheimer reaction.
Additionally, cytokines may be
linked to spirochete persistance.
Borrelia bacteria secrete cytokines
that have been implicated in being
able to suppress the host’s immune
response. This type of Borrelia
induced immunomodulation would
allow the bacteria to cause persistent
infection. Many patients have
overlapping symptoms of both Lyme
and autoimmune disease. These
patients would benefit from combination therapy with both antibiotics and
inhibitors of TNF alpha /Il-6.
Gaito mentioned a 2003 study
reported by Dieterich a patient with
idiopathic pulmonary fibrosis was
treated with combined antibiotic
therapy plus anti-cytokine treatment
(IL-1 receptor antagonists and TNF
inhibitor). She listed the 3 TNF
inhibitors on the market: Remocade,
Premera, and Embrel. Each differs in
the amount of immune suppression.
In the Q&A period one doctor said
he had used Embrel, but one patient,
although the joints improved,
developed brain lesions. Another
doctor did not think the tests for IL-6
were any good – his results are
always zero. Another reported that
Embrel resulted in a dramatic
improvement but the patients
insurance company refused to pay.
One doctor expressed concern that
patients with MS, rheumatoid
arthritis, etc. who may have an occult
infection with Borrelia burgdorferi
may subsequently cause their CNS
infection to become manifest by
suppressing the immune system with
a drug like Embrel. One person
suggested there may be a role for
biologic remedies such as omega-3
oils and probiotics.
Neurologist Amiram Katz, MD,
Director of the Lyme Disease Clinic
in Southport, Connecticut, spoke
about Post-Lyme Autoimmune
Disease.
“One of the possibilities of
chronic Lyme disease,” he said, “is
that the patient had Lyme disease
and now has post-Lyme autoimmune
disease.”
Thirty-three percent (33%) of the
Caucasian population is positive for
HLA-DR4 that predisposes to
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the Lyme Times
autoimmune arthritis. However, Katz
also pointed out that many infections
persist in the central nervous system
where the germs are “not under the
gun of macrophages, exposed to a
hostile immune system.”
If a patient comes in with
neuropsychiatric symptoms, Katz’s
workup includes testing for heavy
metal intoxication, carbon monoxide
poisoning, tick-borne diseases. He
orders PCRs and sends all available
body fluids to several labs for testing
by ELISA and western blot. He also
uses MRI, SPECT, PET, neuropsychiatric testing, EMGs, EEGs, etc.
To treat post-Lyme autoimmune
disease Katz may utilize the following agents:
· Plaquenil
· Macrolides (for possible babesiosis)
· Bicillin injections (may act as
immune moderator)
· Immune modifying agents, if
demylenation is prominent, plus
antibiotics)
· Cytotoxics
· High dose steroids
· IVIG (prevent autoantibodies by
binding to antigen sites)
The role of persistent infection
needs to be clarified. Katz feels that a
major part of chronic Lyme disease is
autoimmune.
In the Q&A session, one doctor
mentioned the risk of IVIG, that it
was contaminated by a virus a few
years ago, and may in future contain
prions. Katz countered that their
screening is very good and there has
been no associated disease with over
a million doses. Vaccines may cause
problems by triggering an autoimmune response. Another doctor
thought that most post-Lyme
syndrome was caused by chronic
infection.
Dr. Richard Horowitz, physician
from Dutchess County, New York,
spoke about designing individual
treatment regimens for Lyme disease
and other tick-borne diseases. In his
practice, 70% of Lyme patients are
coinfected with ehrlichiosis and need
Page 56
two intracellular antibiotics simultaneously. If he sees a very sick patient,
especially one with emotional
lability, he suspects subclinical
babesiosis. FISH tests are positive in
30% but he rarely sees textbook
symptoms in coinfected patients. If
patients do not respond to treatment,
Horowitz will check for bartonella,
which Steere found in 40%.
Chronic Lyme disease must be
seen in the light of other tick-borne
diseases, including ehrlichiosis,
babesia, bartonella, mycoplasma,
chlamydia, Rocky Mountain spotted
fever, Q-fever, tularemia, and viral
infections such as HHV6, HHV8, and
perhaps West Nile. Symptoms of
these diseases overlap and many
patients who have chronic ongoing
symptoms and have failed classic
therapy for Lyme, may improve once
all co-infections are diagnosed and
adequately treated.
Ehrlichiosis
Symptoms
• Febrile illness, usually with acute onset
• Myalgias
• Malaise
Testing
• HME & HGE titers and PCRs
• Cytopenias
• Morulae (intracytoplasmic colonies) in WBC, CSF, bone aspirate or
biopsy
Treatment
• Tetracyclines
• Rifampin
Babesiosis
Symptoms
•
•
•
•
•
•
•
Increase of severity of symptoms of Lyme
Fevers, chills, night sweats
Fatigue
Joint aches
Paresthesias
Cognitive problems
Increase in emotional lability
Testing
•
•
•
•
•
•
•
B. Microti
Smear
IFA
PCR
FISH for WA-1
Increase in Bun/Creatinine
Subclinical presentations more common
Treatment
•
•
•
•
•
•
Mepron and Zithromax
Malarone 100/250 mg 4 qd x 3d then 1 qd thereafter +/- macrolide
Cleocin and Quinine
Lariam
Artemesia
Exchange Transfusion
Spring 2004
Publication of the California Lyme Disease Association
Bartonella
• B. henselae: Cat Scratch disease
• B. Quintana Trench fever (lice)
• B. bacciliformis: Carrion’s disease (sand flies)
Symptoms
• Typical: Papule (rash)/ regional lymphadenopathy
Testing
• B. Henselae PCR
Treatment
• All regimens include Plaquenil 200 mg. bid
• Doxycycline and Rifampin
• Quinolones and Tetras or Macrolides
• Septra/Bactrim and Macrolides
Treatment for Borrelia burgdorferi
Cell Wall
• Penicillins: Amoxicillin, Bicillin
• Cephalosporins: Ceftin, Cedax, Omnicef, IV Rocephin, IV Claforan
• Other: IV Vancomycin, IV Primaxin
Cystic Forms
3. If tetracyclines fail, consider a
cell wall drug.
4. Plaquenil can generally be
added to any regimen to help with
cystic forms, autoimmune overlap,
and raising intracellular pH.
5. If using multiple antibiotics
simultaneously, consider adding
Nystatin, Diflucan, probiotics and a
low-carbohydrate, yeast-free diet.
6. For treating Herxheimer
reactions, consider an alkaline diet
with lemon-lime therapy (drinking
lemon or lime juice added to a glass
of water.)
7. Consider IM Bicillin or IV
antibiotics when oral antibiotics have
failed.
8. Monitor monthly blood work.
9. Continue antibiotics until
symptom free for 2 months.
10. After a long course of
antibiotics, consider a trial off of
them for treating candida
• Plaquenil
• Flagyl
• Tinidazole
Intracellular
• Macrolides: Zithromax, Biaxin, Dynabac
• Quinolones: Cipro, Levaquin, Tequin, Avelox
A Mycoplasma Study
Mycoplasma is a long term,
intracellular infection. Twenty-seven
chronic Lyme patients were screened
for mycoplasma after long-term
antibiotic use. All patients showed
evidence of persistent Mycoplasma
fermentans infection by PCR analysis
after an average length of antibiotic
treatment of 11 months. The average
patient received 8 months of macrolide therapy, 1 week of quinolone
therapy, and 4 months of doxycycline
therapy. This study demonstrated
that despite recommended treatment
regimens, persistent mycoplasmal
infections occurred. Multiple cycles
of antibioitcs are required because of
their intracellular location, slowgrowing habit, and inherent insensiNumber 36
2. If a patient’s symptoms
plateau or worsen, consider coinfections.
tivity to most antibiotics.
Horowitz also tests his patients
for heavy metal contamination. If
serious, he orders a trial of chelation
therapy, treatment with methylcobalomine, complemented by
psychiatric support.
In the Q&A session, one doctor
told of a patient who developed
hallucinations on Lariam. Another
suggested some patients benefit from
avoiding gluten in their diet.
Designing Combination Treatment
Therapies
1. When first treating a patient
with Lyme and other tick borne
diseases, consider building a regimen
around a tetracycline.
11. Pulsed therapies may be used
for antibioitcs intolerance or candida
problems
Dan Cameron, MD, MPH, of
Mt. Kisco in Westchester County,
New York, presented the VOLT
study – Validation Of Lyme disease
Treatment. He described the process
of developing treatment guidelines:
panel selection; article selection;
grading of evidence; summary. The
guidelines now in most use for
treating Lyme disease were developed by the Infectious Disease
Society of America (IDSA) and
published in 2000. Later, the
American College of Physicians
adopted it and there are no current
plans for updating it. Their recommendation – which is popular with
insurance companies and HMOs – is
that repeat and prolonged treatment
of Lyme disease is of no benefit.
According to Cameron, IDSA did not
show how they arrived at their
conclusion.
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the Lyme Times
In 2003 an ILADS panel of
primary care physicians, specialists
and others – representing a broader
spectrum than the IDSA panel –
initiated the process for developing a
new guideline for the treatment of
chronic Lyme disease. Selection of
articles from 1975-2002 yielded 6000
articles which were graded. (Evidence is graded by the following
standard: level one – placebocontrolled, double-blinded trials;
level 2 – case reports; level 3 –
expert opinion.)
According to population-based
studies, 34% had chronic Lyme
disease (Shadick) and 62% had
symptoms post-treatment (Wormser).
The Klempner study attested to the
serious impact on quality of life, and
patients in this study had been sick
an average of 4.7 years.
that IDSA did not use any of the
published papers that document
persistent infection in spite of
treatment. This amounts to intellectual fraud, he stated.
Dr. Raphael Stricker, from
California Pacific Medical Center in
San Francisco, spoke first about
CD57 natural killer immune cells in
chronic Lyme disease. CD57 cell
production is downregulated by
cytokines that occur in chronic Lyme
disease, and levels are especially
depressed in patients with neurologic
symptoms who are more difficult to
treat. Recovery of these cells oc-
The third step was to write the
summary. There are no accurate
tests, therefore tests should not
exclude the diagnosis, they concluded. The physician’s clinical
judgment should be primary.
Treatment duration should be based
on clinical response and not on an
arbitrary cut-off time. Stopping
treatment while the patient is still
symptomatic to allow for delayed
recovery is not recommended.
When Cameron attempted to
submit the guideline for peer review
he was rebuffed. “Basically the
manuscript purports to establish
guidelines for a disease state that
does not exist,” the editor wrote.
Undaunted, the ILADS team is
continuing efforts to get the guideline published.
According to VOLT, 25% of
patients fail treatment. Delayed
treatment accounts for much of this
statistic. Patients whose treatment
had been delayed almost two years
were more likely to fail. Retreatment
succeeded in 76%, however longer
treatment was required (5 months).
Recurrent Lyme disease is
associated with treatment delay.
In the Q&A, one doctor noted
Page 58
Raphael Stricker, MD, discussed immunologic problems in Lyme disease.
curred in 60% of patients with
musculoskeletal symptoms after 6
months of treatment; in contrast,
recovery only occurred in 33% of
patients with neurologic disease after
9 months of treatment.
Dr. Stricker pointed to a disconnect between the immunologic and
clinical manifestions of chronic
Lyme disease in some cases. Some
clinically sick patients may have
normal or high CD57 levels, which
are associated with neurologic
syndromes (ALS, MS, Parkinson’s
disease), true autoimmune disease
(systemic lupus, Crohn’s, Sjogren’s
syndrome), malignancy (ovarian,
prostate, lymphoma), inadequate
antibiotic therapy, or perhaps a
qualitative defect (malfunction) in
CD57 cells. On the other hand, some
patients who are clinically well may
have low CD57 levels. These patients
are more likely to have persistently
positive IgM Lyme Western blots,
indicating persistent infection. They
do well on antibiotics but relapse
when antibiotics are withdrawn.
Dr. Stricker retrospectively
reviewed 13 “worst of the worst”
immunologic cases in patients
starting with less than 10 CD57 cells
(normal range 60-360). There were
nine women and four men, and the
mean time to diagnosis was 8 years
(range 9-300 months). Coinfections
were found in 85%, and as expected
a high number (77%) had neurologic
symptoms. Patients were treated an
average of 17 months; unfortunately,
clinical response was poor and CD57
levels showed a minimal increase in
most patients. However, some
patients did improve. One patient
who started out in a wheelchair with
zero CD57 cells was able to walk
after 18 months of treatment. Her
CD57 count had increased to 22.
In a second talk, Dr. Stricker
spoke about the sexual transmission
of Lyme disease. In 2002, Dr.
William Harvey advanced the theory
of human sexual transmission of
Lyme disease based on epidemiologic
data. His paper on this topic appeared in Medical Hypotheses
[Harvey, W.T. and P. Salvato, Lyme
disease - ancient engine of an
unrecognized borreliosis pandemic.
Medical Hypotheses., 2003. 60(5): p.
742-59.].
Studies of Borrelia, Babesia,
Ehrlichia and another tickborne
disease, Q-fever, showed that there is
infection of semen and direct
transmission in animals and, in the
case of Q-fever, sexual transmission
in humans. However, the key point is
that the mode of transmission is
significant - sexually-transmitted
disease was significantly less virulent
than infection acquired through other
Spring 2004
Publication of the California Lyme Disease Association
routes of transmission. Based on
clinical and immunologic evidence,
Dr. Stricker showed that some
partners of his Lyme disease patients
are infected with the Lyme spirochete. He studied 42 couples and
concluded that just as in the animal
studies, patients who contracted
Borrelia by direct human contact,
rather than from a tick bite, had
significantly fewer symptoms.
Dr. Meer-Scherrer of Switzerland presented the case study of a
female patient with bartonellosis,
babesiosis, and Lyme disease. On the
patient’s emergency visit, her
symptoms were consistent with
stroke, hemorrhage, or myoclonus.
Dr. Meer-Scherrer gave a caution
about homeopathic remedies; one
turned out to be a highly toxic plant
extract.
Southhampton, Long Island,
physician Joseph Burrascano, Jr,
MD, described his computerized
database project, which is being
implemented thanks to a collaborative effort with Dr. Meer-Scherrer.
The database includes demographics,
past history, Lyme symptoms,
treatments and response to treatments, as well as other information.
There is unlimited power for analysis, but at the moment time-consuming manual input is required.
Burrascano suggested that doctors
could combine and share data and
regularly report findings based on
large cohorts of patients.
The current program needs to be
refined and data entry methods
improved, perhaps to include
scannable forms or checklists. The
possibilities are exciting. Patients
could be tracked for long-term
outcomes after different treatments.
A central computer could be set up
and data accessed via the internet.
Eventually consensus, standardized
treatments could evolve as a result of
following many patients and keeping
careful records.
Special thanks to Ken Lipman
who contributed to this report.
Number 36
Book Review
“Bull’s Eye”
One Patient’s Perspective
by Linda Finn
Dr. Jonathan Edlow’s “Bull’s
Eye” offers a dispassionate, philosophical slant on the early history of
Lyme disease, but neglects to include
recent pertinent science (cystic stages
etc) and wanders a bit when it comes
to more recent history. So from this
patient’s perspective “Bull’s Eye”
misses the target. If I knew nothing
of Lyme disease this book might have
charmed my sense of logic and
rationality, but I do have Lyme
disease and have read enough to
know that the cystic stage is a reality
and that it likely accounts for
many cases of persistence.
“Bull’s Eye” attempts to walk
a tightrope of non-commitment
across the abyss of divisiveness
that currently exists. Although Dr.
Edlow repeatedly stresses that the
medical community is paradigm
driven he seems to be unaware
that he is subject to that same
frailty. Dr. Edlow sees the medical
world as divided into two camps
on Lyme disease issues: “conventional” and “alternative.” He assures
the reader that his use of the word
“alternative” does not imply “alternative medicine”, but just an alternate
to the conventional world. The
choice of loaded words however, may
be an indication of a major “paradigm” blind spot for Dr. Edlow.
(“Restrictive” and “inclusive” seem
to be more accurate terms to describe
the disparate views.) There is
nothing “alternative” about a
treatment protocol (long term and
aggressive antibiotics) if it has
clinical success.
Dr. Edlow misses the target yet
again when he shies away from
explicitly addressing the peer-driven
paradigms and censure that prevent
so many patients from obtaining an
early diagnosis and effective treatment. As a patient I was lucky to find
a physician unafraid to treat me;
unafraid of the “conventional”
censure that abounds in the “conventional” medical world. Dr. Edlow
lightly touched upon peer censure
when describing a recent convention.
He did not address how this pervasive censure prevents diagnosis and
treatment for too many patients.
This book was a roller coaster of
hope and despair for me. The higher
my hopes for Dr. Edlow’s clarity of
vision and wisdom, the deeper my
despair when his philosophical
arrows wavered out of sight or were
lacking a sharp edge of clarity.
Hope started on the first page
with four wonderful quotes. The last
quote from a Sherlock Holmes novel
is perfect: “It is a major mistake to
theorize before you have all the
evidence. It biases the judgment.” To
extrapolate one might say that it is
also a major mistake to set restrictive
treatment guidelines before you have
all the evidence. Dr. Edlow clearly
reiterates this thought at the close of
the book (another moment of hope)
Continued on back page
Page 59
the Lyme Times
Time For Lyme Educational Video
The Students, The Educators And Lyme Disease
This one-hour educational video produced by the Greenwich Lyme
Disease Task Force provides information about the cognitive, social and
emotional issues that can occur in students with chronic Lyme disease that
may become apparent in a school setting. This video has been created to
enable educators to recognize manifestations of the disease, and to aid
students suffering with Lyme and other tick-borne illness.
Second
Chance to Fill
Out National
Survey
Cost per video: $12 – Please allow three weeks for delivery.
Approximately 60 people have
completed and sent in surveys they
found in the Lyme Times #35. The
more people that respond, the more
compelling our survey will be.
CALDA will publish the results as
soon as the survey is completed.
People may then use the information
in discussions with legislators,
public health officials, etc.
cut on dotted line
Tell me about the program.
The speakers include:
Patricia Smith – President, Lyme Disease Association
Brian Fallon, MD, MPH – Assistant Professor Department of Psychiatry, Columbia
University College of Physicians and Surgeons
Leo Shea J. III, Ph.D. – Clinical Neuropsychologist and Assistant Professor of
Rehabilitation Medicine, Rusk Institute of Rehabilitation, New York
Sandra Berenbaum, CSW-R, BCD – Clinical Social Worker, Family Connections
Center for Counseling, Wappinger Falls, New York
Caroline Calderone Baisley – Director of Health, Greenwich Department of Health
Please send _______ tapes at $12.00 each to:
My check for $________________ is enclosed
CALDA has launched a survey
program to compile the data necessary to support our health care
advocacy issues. Survey data is much
more useful than anecdotal evidence
because it tells the extent of the
problem on a broader basis. Many
legislators and other public policy
officials prefer survey data to
illustrate a point. This is your chance
to stand up and be counted. Make
your voice heard by filling out the
survey on the opposite page and
mailing it to the address specified.
(Please make checks payable to the GLDTF.)
Do I have to identify myself?
Name:_______________________________________________
Please print
_______________________________________________
Street
____________________________________________________
City
State
Zip
______________________________________
Phone Number
Payment Method:
Please charge my account in the amount of $_________________
(We accept Visa, Master Card, and American Express.)
Card#_______________________________________Exp.Date_________________
__________________________________________________________
Authorized Signature
Thank you for your order,
The Greenwich Lyme Disease Task Force, Inc.
Affiliate of the Lyme Disease Association
P.O. Box 31269
Greenwich, CT 06831
The GLDTF is a registered non-profit organization, and all donations over
the cost of the video are tax deductible.
Page 60
While it is not absolutely
required, we strongly recommend
that you do so to lend strength to the
validity of the study. In order for
surveys to be deemed valid for
scientific and advocacy use it is
necessary to ensure that there are no
duplicates. Some surveys request the
person’s name or social security
number to accomplish this purpose.
We request your initials plus your 6digit birthdate (00/00/00) because it
is an anonymous but unique identifier. When we compile the data, we
will use this number to insure that
there are no duplicates. However, we
will not disclose this information to
anyone else. Nor will your identity be
included in any reports compiled
from the data.
Spring 2004
Publication of the California Lyme Disease Association
Please copy or tear out this page and complete the questions below. Send the completed form to CALDA, Attn: Surveys, PO Box 707, Weaverville, CA 96093. Thank
you!
SURVEY
Impact of CDC Surveillance Definition of Lyme disease
Date:________________
Patient Identifier_______________________/________/________
(initials of your names plus 6-digit birthdate in format 00/00/00))
1.
ELISA:
a. Have you ever been told that you did not have Lyme disease because of a negative ELISA
test result? Yes______ No______
b. If so, in what year did this occur?__________
c. Have you ever been denied medical reimbursement by an insurance company because of a
negative ELISA test result? Yes______ No______
d. Have you ever been denied disability coverage by the state or an insurance company be
cause of a negative ELISA test result?
Yes______
No______
e. Have you ever had a physician refuse to perform a Western Blot test for Lyme disease
because you tested negative for Lyme disease with an ELISA test? Yes____ No_____
2.
Western Blot:
a. Have you ever been told that you did not have Lyme disease because a Western Blot did not
have at least 5 of the 10 CDC approved IgG bands or 2 of the 5 CDC approved IgM
bands?* Yes_____ No______
b. If so, in what year did this occur?__________
c. Have you ever been denied medical reimbursement by an insurance company because
a Western Blot did not evidence at least 5 of the 10 CDC approved IgG bands or 2 of the
5 CDC approved IgM bands?* Yes______ No______
d. Have you ever been denied disability coverage by the state or an insurance company
because a Western Blot did not evidence at 5 of the 10 CDC approved IgG bands or 2 of
the 5 CDC approved IgM bands?* Yes_______ No______
3.
Diagnosis.
a. In what year were you first diagnosed with Lyme disease? ___________
b. On what basis were you diagnosed with Lyme disease? (Check below)
ELISA ______
Western Blot_______
PCR______
Clinical Symptoms______
Spinal tap________
Other______
*CDC considers an immunoblot positive for IgM if 2 of 3 bands are present: 24 kDa , 39 kDa, &
41 kDa…and for IgG if 5 of 10 bands are present: 18 kDa, 21 kDa, 28 kDa, 30 kDa, 39 kDa, 41
kDa , 45 kDa, 58 kDa , 66 kDa, & 93 kDa.
Number 36
Page 61
the Lyme Times
CALDA President’s Message
LDRC Changes Name, Adopts
New Strategic Plan
by Phyllis Mervine
At the October Board of Directors
meeting, Lyme Disease Resource
Center (LDRC) directors voted to
change the organization’s name to
California Lyme Disease Association
(CALDA). In January, the new logo
was adopted (see front page) and the
strategic plan was approved.
At meetings during the summer
and fall, the planning group focused
on the role of CALDA and the three
organizations that CALDA works
closely with:
• LDA
• ILADS
• Local Support Groups
The organizations that address
the needs of people with tick-borne
diseases all share a common problem
of having insufficient resources, both
in terms of capital raised and
volunteer hours available. Hence,
there is a strong need within the
community to leverage scarce
resources and avoid duplication of
efforts. With this in mind, reevaluation of the best role for
CALDA to play within the tick-borne
disease community was critical.
We wanted to establish a focus
for CALDA that would address
strategic needs within the Lyme
community that would otherwise be
unmet and would provide the least
amount of duplication of efforts
among the groups. LDA and ILADS
are fundamentally national in the
focus and scope of their activities,
while local support groups seek to
address the needs of the more
immediate community. The decision
was made to focus CALDA’s effort
primarily on the statewide level (no
other group addresses this need) and
to provide strong assistance to local
support groups and national groups.
Page 62
The decision was made to continue
the Lyme Times as part of CALDA’s
national effort.
History
LDRC was conceived in 1989 as
a national organization serving the
needs of those with tick-borne
diseases throughout the nation. Its
first project was to launch the Lyme
Times, a lay journal, which is
currently distributed throughout the
world. In 1998, LDRC participated
in establishing the Lyme Disease
Advisory Committee (LDAC)
through California legislation and
has a representative on that committee. The LDAC works with the
California Department of Health
Services to address health care
concerns arising from tick-borne
diseases.
In 2002, LDRC became an
affiliate of the Lyme Disease Association, an organization devoted to
serving the needs of the tick-borne
disease community on a national
level and raising funds to support
much needed research. In 2003,
LDRC launched the EuroLyme
Times, a lay journal focusing on tickborne diseases in Europe.
CALDA can help you
We are working on patient
packets, an insurance memo, a memo
for doctors treating Lyme patients,
and other projects that will be made
available to the Lyme disease
community as soon as they are
completed. We have also set up a
simple process for individuals and
support groups to enter into a fiscal
sponsorship relationship with
CALDA, so that donors to special
projects can receive a tax advantage
for substantial donations.
CALDA needs your help
It is clear that CALDA is best
positioned to address the statewide
needs of the California tick-borne
disease community and to play a
supportive role in the national efforts
of ILADS and the LDA and the local
support groups. The survey on page
45 is a first step toward our program
goal to develop surveys and collect
health advocacy data from people
with tick-borne diseases. We need
the help and cooperation of patients
and support groups to make this
program a success.
In addition, to meet one of our
top five operational goals we are
looking for a person to oversee
fundraising. If you have experience
and are interested in joining our
team, please contact me at CALDA,
PO Box 1423, Ukiah, CA 94582, or
call 707-468-8460. We are also
looking for associate editors to take
over parts of the Lyme Times. Please
contact me if you are interested.
CALDA Vision Statement
Every person who contracts Lyme receives a prompt diagnosis and
adequate medical treatment to prevent the development of persistent
Lyme disease.
Every person with persistent Lyme disease receives readily
accessible and sufficient medical treatment to preserve health by either
curing or controlling the disease to improve the individual’s current
quality of life, prevent the progression of disease, or extend life span.
Every physician in the state receives adequate education regarding
tick-borne diseases and is able to accurately diagnose and treat tickborne diseases.
Spring 2004
Publication of the California Lyme Disease Association
Yes! I’d like to join the fight against Lyme disease!
Please begin a 1 year membership in the California Lyme Disease Association:
$30 - Basic*
$50 - Supporting*
$100 - Sustaining**
$200 and up - Patron***
$15 - Special Needs*
I enclose an additional $_______________ as a tax-deductible contribution to the
CALDA for education and research.
* All members receive a complimentary subscription to the Lyme Times.
** People donating at the $100 level or above may receive a packet of 10 copies of the Lyme Times
to use for educational purposes. If you elect this option, check this box.
***Patrons may elect to receive both 10 Lyme Times plus a free Time For Lyme video (see page
60). Check here if you would like 10 Lyme Times
the video
Enclosed is my check or money order for total amount of $_________________.
Please consider donating to honor family and friends at important occasions such as anniversaries,
birthdays, holidays, graduations, memorials and thank yous, etc. Make your check payable to
CALDA and mail with this form to CALDA, PO Box 707, Weaverville, CA 96093.
My
Name
Email_________________________________
Please print
_____________________________________________________________________________
Street
_____________________________________________________________________________36
City
Back issues of the
Lyme Times many be
viewed at
www.lymetimes.org.
Number 36
State
One way to help is to
remember CALDA by
honoring family and
friends at important occasions, such as anniversaries, birthdays, holidays,
graduations, memorials
and thank yous. We will
send an appropriate and
personal card to the person in whose name a
contribution is made, as
well as a thank you note to
the donor.
Zip Code
Take advantage of our
special bulk rates for your
rally or conference. Write
LDRC, PO Box 707,
Weaverville, CA 96093.
Allow 2-3 weeks for delivery; more for large orders
(over 100). Offer good
while supplies last.
Page 63
the Lyme Times
Bull’s-Eye, cont. from p.59
that not all the evidence is in.
Dr. Edlow’s philosophical
musings carried him to “Galileo’s
Daughter” and other marvelous
writings and ideas that are germane
to scientific inquiry in general. And I
was thrilled with his awareness of
the entrenched paradigms that so
heavily encumber the medical world,
whatever the reason.
In between the opening and
closing were a few moments of agony
and despair. In the chapter “Ambiguity in the Lab,” Dr. Edlow avers that
many ELISAs are 95% sensitive and
95% specific. I recoiled in horror.
Maybe in a subset with restrictive
symptomology, but doubtful as a
verity across the board for any
ELISAs. This entire chapter was
ambiguous and not helpful.
I would love to see Dr. Edlow talk
with Lynn Margulis, famed biological theorist, about spirochetal
capabilities and cystic stages. I would
love to see Dr. Edlow talk with
pathologist Paul Duray at the NIH. I
would love to hear Dr. Edlow
unequivocally state that restrictive
treatment guidelines based on
inadequate tests are not acceptable
science. I would love to see Dr.
Edlow more vigorously acknowledge
the need for and encourage the basic
science that is so needed for this
disease. I would love to see Dr.
Edlow take a stand on behalf of the
patient.
Book Shelf
Health Insurance Resources-Options for People With a
Chronic Disease or Disability
By D.E. Northrup and Stephen Cooper
Demos Medical Publishing. 2003.
Page 64
section presents an overview of
health insurance plans, Social
Security, Medicare, Medicaid, and
federal legislation impacting health
insurance coverage. The second
section includes directories and
resources to assist in researching
health insurance options.
Comment: Excellent information
if a bit overwhelming. Makes you
wonder why health insurance in the
U.S. has to be so complex.
75th Birthday Party for Dr.
Jones
Saturday May 1
2pm - 5pm
Beardsley Zoo
Bridgeport, Connecticut
Admission to the zoo for Dr.
Jones’ guests will be $5.00 for adults
and $4.00 for children. (Children
under 3 are free) This is a special
rate reserved only for guests of Dr.
Jones. Please check-in at the Dr.
Jones table at the entrance.
Enjoy the zoo with your family
and at 4:00pm, please gather at the
Pavilion building with Dr. Jones
for a photo, cake and
singing. In lieu of gifts,
Dr. Jones has requested
that donations be made
to the Lyme Disease
Association’s
LymeAid 4 kids fund
(see page 31)
Non-Profit Organization
US Postage Paid
Permit #16
Petaluma, California
This guide was developed to
assist people with disabilities and
chronic health conditions, as well as
health care professionals, in understanding the health care system and
maximizing their rights and entitlements within that system. The
authors are officials of the National
Multiple Sclerosis Society. Information about a wide variety of options
will help individuals who are
uninsured, underinsured, or who
have questions about insurance and
don’t know where to begin. The first
Calendar
the Lyme Times
California Lyme Disease Assn.
P.O. Box 1423
Ukiah CA 95482
When Dr. Edlow credits restrictive treatment guidelines without
recognizing known treatment failures
and Herxheimer responses that
continue off and on through time, I
cringe…because that could have been
applied to me by a doctor who read
only the guidelines.
But the reason that “Bull’s Eye”
ultimately failed to meet my expectations is its lack of addressing known
spirochetal capabilities i.e. Brorson’s
work with cystic stages or Dorward’s
video of borrelia leaving a macrophage in cellular disguise. His failure to
acknowledge the logic that if even
“one” study finds extant borrelia in a
subject after nominal antibiotic
treatment then that should open the
door wide, without any hesitation, to
the persistence of infection.
Spring 2004