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Volume: 5
Issue: 07
Date: 02-Jul-97

Table of Contents:

I.    LDRC: September Conference on Emerging Tick Borne Disease
      in LA
II.   LYMENET: Survey of Orofacial Pain Associated with LD
III.  LYMENET: Review of LDF Book by Douglas S. Dodge
IV.   About The LymeNet Newsletter


*                  The National Lyme Disease Network                  *
*                                    *
*                         LymeNet Newsletter                          *

IDX#                Volume 5 / Number 07/ 02-JUL-97
IDX#                            INDEX
IDX#  I.    LDRC: September Conference on Emerging Tick Borne Disease
IDX#              in LA
IDX#  II.   LYMENET: Survey of Orofacial Pain Associated with LD
IDX#  III.  LYMENET: Review of LDF Book by Douglas S. Dodge
IDX#  IV.   About The LymeNet Newsletter

I.    LDRC: September Conference on Emerging Tick Borne Disease in LA
Sender: Rene Landis <[email protected]>

         The Los Angeles County West Vector Control District
                  present a one-day conference on:

                    Saturday, September 13, 1997

Held at the Los Angeles County West Vector Control Building,
6750 Centinela Avenue,
Culver City,
Minutes from LAX (Los Angeles Airport)

Program Chairpersons:
Robert S. Lane, PhD
James H. Katzel, MD

Lodging for Registrants Suggested at:
Red Lion Hotel,
6161 Centinela Avenue
310-649-1776 or
1-800-RED LION

Complimentary Friday Evening Wine & Cheese Reception at Red Lion, 6 PM

CME - 6
This conference has been approved for six contact hours of continuing
education credit.  The California Department of Health Services is
approved as a provider for continuing education by the California
Medical Association in the Continuing medical education Category I
credit, the California State Board of Registered Nursing, Provider
00584, the State Board of Dental Examiners, Provider 6-2645, and the
Accreditation Evaluation Services of the California Pharmacists
Association, Provider #160 (expires 2/18/98)

Day of Lectures followed by Panel Discussion & Optional Public Forum

For PUBLIC FORUM only, at 4:30, there will be no charge.

Contributions to Lyme Disease Resource Center for this conference
are appreciated!

If you would like brochures or program information sent to physicians &
health professionals, please Email, Snail Mail or Fax all address
information to:

Rene Landis,
Conference Organizer
2712 Saint Clair Drive,
Las Vegas NV 89128
Phone: 702-256-9776  
Fax:  702-256-9774
[email protected]


II.   LYMENET: Survey of Orofacial Pain Associated with LD
Sender: Gary M. Heir, DMD <[email protected]>

Dear Lyme Patient:

As you are well aware, Lyme disease is often accompanied by a variety
of pain problems, many of which mimic other disorders.  As a professor
of dentistry, President Elect of the American Academy of Orofacial
Pain, and the parent of a chronic Lyme sufferer, I have attempted to
make my dental colleagues aware of the symptoms of Lyme disease which
may bring a previously undiagnosed patient to a dentist under the
presumption that their pain is due to dental causes.  

While others and I have clearly observed dental and facial pain in the
Lyme patient, science requires that we collect specific numbers and
analyze our findings.  Therefore, I ask for your assistance in
answering the following questions.  Of course, if you have any specific
questions regarding an  individual problem, I will be more than happy
to try and help.

I can not thank you enough for your help.  The information obtained in
this survey will be used in lecture material and future publications
to inform healthcare providers about Lyme disease.  Your contribution
is sincerely appreciated.


Gary M. Heir, DMD
Diplomat, American Board of Orofacial Pain
Clinical Associate Professor, Dept. of Oral Pathology, Biology, and
Diagnostic Services, University of Medicine and Dentistry of New Jersey
President Elect, American Academy of Orofacial Pain
E-mail: [email protected]

Please EMAIL any specific problem you have, or have had not addressed
below, in order that it may be added to future surveys.


1. Have you been diagnosed with Lyme disease?
Yes____ No____

Did you have a tick bite?
Yes____ No____

Did you have an EM [Erythema migrans or Bull's Eye rash]
Yes____ No____

If diagnosed, how?  
____ Blood test
____ Urine Test
____ Spinal Tap
____ Clinical Presentation

If yes, was your Lyme disease diagnosed early____ or late ____?

2. Have you observed any of the following?

TMJ pain [pain in the jaw joints or in front of the ears
during chewing]
Yes____ No____

Pain of jaw muscles with or without chewing
Yes____ No____

If yes, was TMJ discomfort associated with an injury Yes____ No ____?
or did it just begin by itself Yes____ No ____?

If yes, is the TMJ pain constant Yes____ No ____,
or does it cycle through periods of pain and remission consistent with
other symptoms of Lyme disease? Yes____ No____

Have you had dental treatment for a temporomandibular disorder?
Yes____ No____

3. Have you had:

Toothache and the dentist could find no specific problem?
Yes____ No____

Has dental pain changed locations, moving from tooth to tooth?
Yes____ No____

Have you had multiple dental treatments with little success?
Yes____ No____

Have you experienced burning mouth?
Yes____ No____

Have you experienced sore throat?
Yes____ No____

Does you dental pain, burning mouth or sore throat cycle thorough
periods of pain and remission consistent with other symptoms of Lyme
Yes____ No____

4. Do you have facial pain or other unusual sensations? Yes____ No____

Described as:
____ Burning
____ Numb
____ Tight
____ Aching
____ Throbbing
____ Electric shock

Are these complaints:
____ Constant
____ Intermittent
____ Associated with flares of other Lyme disease symptoms

5. Do you have headache?
Yes____ No____

If yes, is your headache
____ Constant
____ Intermittent
____ Associated with flares of other Lyme disease symptoms

Have been diagnosed as:
____ Migraine
____ Tension type headache
____ Stress
____ Muscle headache

What treatment have you been offered for headache?
____ None
____ Psychological support
____ Over-the- Counter medications [self treatment]
____ Prescription Non-Steroidals [Motrin, Advil, etc.]
____ Prescription analgesic [Codeine, Vicodin, Percodan, etc.]

Was treatment successful?
Yes____ No____

6. Do you have, or have you had any neurological manifestation of Lyme
disease in your face or jaws?
Yes____ No____

____ Bell's Palsy [___one side only ____ both sides]
____ Trigeminal neuralgia

7. Do you have, or have you had sinus headache?
Yes____ No____

8. How many physicians, dentists, or other health care providers did
you seek treatment with for these or other complaints before being
diagnosed with Lyme disease?

___ 1
___ 2-5
___ 6-10
___ More than 10

How long do you think you had Lyme disease before you were correctly

___ Less than one year
___ 2-5 years
___ 6-10 years
___ More then 10


III.  LYMENET: Review of LDF Book by Douglas S. Dodge
Sender: Douglas S. Dodge

The following book review represents the opinions of the author
and not necessarily the perspectives of the editors.

And Other Tick-Borne Disorders
By Karen Vanderhoof-Forschner
New York: John Wiley & Sons, Inc.
1997. 237 pages. $14.95

This book is for the millions already infected, plus the hundreds of
thousands who will sicken before a universal vaccine is available.
It is written by one of the doyennes of Lyme disease.  She joins the
sorority of other pioneers for truth in the battle against an out-of-
control epidemic.  They include Martina H. Ziska, M.D., Denise Lang,
author of _Coping With Lyme Disease_, and Polly Murray who wrote
_The Widening Circle_.

In 1988, Karen Vanderhoof-Forschner incorporated the present Lyme
Disease Foundation with her husband Tom.  In 1991 they lost a son to
Lyme disease infection transmitted during her pregnancy.  The
Forschners have devoted their lives to helping others stand up to
those who claim that "nobody dies of Lyme disease;" to those who
preach that Lyme disease is overdiagnosed; to those who disseminate
these and other falsehoods through clinics, hospitals, government
agencies, insurance companies, universities, and tens of thousands of
doctors' offices.

The Foundation's mission has not been easy.  It has met with
resistance, even vilification, from professors of medicine, from
practicing physicians conned by academicians, and from federal health
agencies which hold opposing views on diagnosis and treatment of Lyme
disease.  A National Institute of Health scientist has called this
most influential of the nation's Lyme disease groups "The Whacko Lyme
Disease Foundation," resulting in an accusation of insubordination and
conduct unbecoming a federal employee. He received a "Notice of
Proposed Suspension" from the NIH which maintains five-figure grants to
the Foundation and has just given a public service award to Karen.

In September 1995, Connecticut Magazine wrote that the Forschners
"claimed" they lost their son to Lyme disease.  The magazine went on
to admit that the foundation's cause is not helped by "an undeniable
lunatic fringe" that works against it.  The Forschners maintain their
cool, and their objectives. _Everything You Need To Know About Lyme
Disease_ includes, of course, chapters on awareness, signs and
symptoms, diagnosis, treatment.  Along the way, descriptions of the
diseases -- not just Lyme -- that are vectored by ticks.  And the hosts
-- not just deer and mice and the more and more frequent humans -- that
insure survival of the ticks and the Lyme disease bacteria.  Many
readers will first read here that the old wives' methods of tick
removal are guaranteed to speed the injection of the Lyme disease
bacteria into bloodstream and brain.  Forschner considers "the most
important message" in her book to be the proper and prompt removal of
the tick.

The chapter on "Managing You Property" will teach you how to reduce
"the tick larva population by as much as 97 percent.  You'll also
eliminate about half the population of nymphal ticks and nearly
three-quarters of the adults." Cost?  More than the 40 dollars for a
month of antibiotics, but as New York Magazine puts it, that's "the
penalty for having a summer house."

The final sections are unique to Karen Forschner's book, demanding its
addition to the libraries of patients, physicians, anyone who has ever
heard of Lyme disease, and scientists in both camps.  These appendices
include a 26-page history of Lyme disease, from 1883 to the present,
and an invaluable Selected Bibliography of 16 pages.

Many readers of this review who might gasp at the numbers in the first
paragraph may not know that Karen Vanderhoof-Forschner, along with her
other honors and degreees, is a C.L.U., daughter of a C.L.U. who is
also an actuary.  Using the figures from other researchers contracted
by the Centers for Disease Control and Prevention (who honor and fund
her), and based on her and their statistics, she has made a tenfold
adjustment to the 1995 numbers reported to the CDC under its
restrictive, epidemiological definition of Lyme disease.  The result is
808,000.  By the end of 1996 it was 960,000.  It doesn't take a C.L.U.
to figure out that in the Spring of 1997 over a million people in the
U.S.A. suffer from what runs neck-and-neck with AIDS as the fastest-
growing infectious disease in the country.

Karen's tabulation by state reveals that you would have to meet less
than 100 people from New Jersey (93) on up to Rhode Island (42) to
find one Lyme disease patient.  Try it if you are in line, for
instance, at the Stop and Shop in Branford, Connecticut (29).  All 29
will at least know someone else with Lyme disease, and a tale of
horror to go along with many of them.  No statistics can forecast the
fate of millions, worldwide, who will go to their deaths not knowing
they were misdiagnosed with diseases that Lyme mimics and camouflages.

Karen can't list them all. Here are a few:

    multiple sclerosis, post-polio syndrome, fifth's disease,
    myasthenia gravis, viral infection of heart, systemic lupus,
    clinical depression, rheumatoid arthritis, gonorrhea,
    Epstein-Barr virus, Lou Gehrig's disease, viral
    infection of spinal cord, Alzheimer's

Even armed with Everything You Need To Know About Lyme Disease, the
reader is poorly equipped to fend off the disciples of those who try to
discredit the Lyme Disease Foundation.  One of the reasons is the help
that this other camp gets from the media that parrot what is published
in scientific presses controlled by academicians.  These reports infect
an unsophisticated public and unsuspecting general practitioners from
whom information on Lyme disease is already withheld, perhaps
deliberately, by Washington and Academia.  Here are examples of the
disinformation that confronts us:

    1) "If the blood test is negative, then the patient could not
        possibly have Lyme"
    2) "Eventually, both intermittent and chronic Lyme arthritis
        resolve, even in untreated patients."
    3) "At any stage of the disease. . . almost everybody gets cured."
    4) "Ninety percent of all identified Lyme disease cases present
        with the rash."
    5) "Lyme disease prevention requires only minimal precautions,
        even for people living in areas with the highest concentration
        of positively identified cases."
    6) "Most ticks are not infected."
    7) "Thirty-six to forty-eight hours are needed before transmission
        of the bacteria takes place."

This reviewer, his wife, and four children and grandchildren who have
Lyme disease, believe that any person picking up Forschner's book will
know the proper rebuttals to the above.  

The Lyme Disease Foundation cannot allow itself the luxury of joining
in the polemics and politics of Lyme disease.  It is surprising that
Karen let go in this book, if only once. Her mention of a "now-infamous
study" by Allen Steere in 1977 refers to this rheumatologist-in-
training who set back forever the research and funding for a disease
that he and colleagues from the Yale School of Medicine self-servingly
declared "a new clinical entity." This was a disease "known for at
least a century." Steere also claimed that it was treatable with
aspirin and steroids.

When Forschner writes of the dampened prospects of international
cooperation because of "an attitude of superiority" of some U. S.
scientists, she is referring to Steere and the academicians he spawned
at Yale, now at Tufts, at the University of Connecticut, and at the
Robert Wood Medical Center in New Jersey.

We, the patients, need Forschner's help.  We, the patients, also need
help from our government.  Where are Kennedy and Dodd with their
promises made at the August 1993 Senate Hearing for an end to this
"silent epidemic?"  Silent?  Or silenced?  Metzenbaum, who chaired the
Hearing, and asked to be told "how much more you need [for public
instruction and financial support]," is also silent.  Retired.

If we can't count on our own government's epidemiologists and health
authorities to educate, warn and protect us, if Washington is incapable
of brokering a peace between the realists and the feel-gooders, must we
turn to the outside world?  Scientists from abroad have taught us, as
well as learned from us.  They have even kowtowed, by accepting use of
the name Lyme disease which, by the World Health Organization's
International Nomenclature of Disease, might more properly be called
Buchwald borreliosis after the German physician who in 1883 described
the skin condition caused by late-stage Lyme, as Karen Forschner

But we risk international scientific ostracism if we continue to play
the fool over here.  One of the Yale physicians, Robert T. Schoen,
hosting their May 1997 Lyme disease symposium is quoted as stating
that "when he contradicts a previous diagnosis of Lyme disease by
another doctor, his intention is to reassure the patient."
Eugene D. Shapiro, another Yale School of Medicine colleague who can't
be taken seriously, is responsible for the comment that "there are
probably better ways to spend health-care dollars" than on research
for a Lyme disease vaccine.  

Karen Vanderhoof-Forschner speaks, solemnly, to those who from others
may never hear the truth.


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