LymeNet Newsletter vol#1 #01 
Author Message
 LymeNet Newsletter vol#1 #01

Hi folks,
   Since this is the first copy of the newsletter, I thought I'd post it here.
If you're interested in subscribing, see the information at the bottom of this
file.  I will *not* be posting LymeNet stuff here on on a regular

*                  Lyme Disease Electronic Mail Network                     *
*                          LymeNet Newsletter                               *
                       Volume 1 - Number 1 - 1/27/93

I.   Introduction
II.  News from the wires
III. Questions 'n' Answers
IV.  Op-Ed Section
V.   Partial Bibliography for Further Reading
VI.  Jargon Index
VII. How to Subscribe and Contribute to LymeNet

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

   This being the first edition of the LymeNet Newsletter, I thought I should
explain why I created it in the first place.

   I did it because I'm tired of seeing people suffer the consequences of
ignorance.  Most chronic LD patients are suffering because their disease was
not recognized in time.  Sometimes the patient is lucky and a simple course
of {*filter*}antibiotics takes care of the problem.  Sometimes the consequences of
ignorance are tragic.  Three weeks ago, another patient died of acute Lyme
infection in Monmouth county, NJ.  She was a 19 year-old college student.
Now a battle is brewing between her doctors and the CDC over reporting her
death as LD related.  Apparently, CDC officials refuse to believe LD can

   This newsletter will provide you with information to prevent chronic
illness.  In addition, it will provide those who are already infected with
information on the latest treatment protocols and rehab techniques.
Unfortunately, political issues keep cropping up in LD affairs, and therefore
this newsletter will provide you with current political news and

   I will try to provide information for both doctors, scientists *and* the
lay reader.  Some of the sections may seem trivial to you, others may be too
technical.  Please understand that this newsletter is for everyone, so you
might not be interested in all the items.

   My primary sources of information will be Lehigh University's media
research tools, and the folks at the Lyme Disease Network of New Jersey.
Carol and Bill Stolow, founders of the LD Net of NJ, are working hard to
extend their network to all 50 states.  We will be exchanging information for
the benefit of both our groups.

   However, YOU will be an integral part of this newsletter, too.  It is
designed to answer your questions.  Therefore, you have to ASK questions.
Questions will be circulated to the subscribers, and responses will be
compiled in the next newsletter.  Please do not be afraid of asking "stupid"
questions.  If your question really is trivial, I will be happy to answer it
for you via personal e-mail.  This is a moderated group, so messages you send

   Feel free to distribute this newsletter on your local systems.  You may
do so as long as you don't modify its contents.

   Now -- On with the newsletter!  This issue's news "clippets" feature 2 New
York Times pieces and one medical journal abstract.  The clippets highlight
how extensive the tick problem is.  As you will see, even President Clinton
is not immune.

   The second letter highlights the explosive growth of tick populations.
The Connecticut Agriculture Experiment Station reports that between 1991 and
1992, the deer tick population in that state *doubled*.  If you can find
information about the tick populations in you state, mail it in.

   Finally, I have included the abstract that no one knew about.  In August,
a New England Journal of Medicine (NEJM) published a study that concluded
that preventative antibiotic treatment of people bitten by ticks in endemic
areas *is* a good idea.  However, this study never made it to the press
wires.  I verified this on the Nexis system.

   Interestingly enough, 4 months later the NEJM publishes a study that
contradicts the first study.  This second study was all over the AP wires.
It made all the major papers, as well as a feature on Lifetime medical
television.  Headlines read "Study concludes Lyme risk low."  Why?
Both papers were published in the same journal.  Both were peer-reviewed.
Both used similar techniques.  Why did one get coverage and not the other?
I won't answer that question.  You make up your own conclusion.

   I bet you didn't know that.  Now you know why you need this newsletter.


II. ***** NEWS FROM THE WIRES ******

SOURCE: The Washington Post
January 6, 1993, Wednesday, Final Edition
HEADLINE: Small Danger at Camp David

   A Dec. 17 news story quoted Eugene D. Shapiro of Yale University as saying
that routine Lyme disease  treatment should be discouraged.  Former President
Reagan must have believed that Lyme disease  was not a threat when he told
President-elect Clinton to make ample use of Camp David.  But things have
changed dramatically at Camp David in four years, and Lyme tick-infested deer
now hang out on the course where Gov. Clinton will play golf.

   The deer could be reduced by Secret Service sharpshooters, and the venison
used in Irish stew to feed the hungry in the D.C. area. Or prime cuts could
be kept for preparation of Korean "Bul Go Gi" hors d'oeuvres. I obtained the
recipe when on military duty in Korea.

   Famous cover girl Christie Brinkley employs African Guinea hens to eat the
ticks in her back yard after they have been dropped there by deer.

   Maybe this would work at Camp David as well.

   EDWIN R. RILEY Williamsburg


TITL: Prevention of Lyme disease after tick bites. A cost-effectiveness
AUTH: Magid D; Schwartz B; Craft J; Schwartz JS
ORGA: Emergency Medical Services, Denver General Hospital.
CITE: N Engl J Med 1992 Aug 20; 327 (8): 534-41

BACKGROUND. In areas of endemic disease, the probability of  Lyme  disease
after a tick bite ranges from about 0.012 to 0.05. Early treatment with {*filter*}
antibiotics prevents most complications of  Lyme  disease, but antibiotics
are generally not prescribed until rash or other symptoms develop.

METHODS. We used decision analysis to evaluate the outcomes, costs, and cost
effectiveness of three alternative strategies to treat patients bitten by
ixodes ticks in areas of endemic  Lyme  disease: empirically treat all
patients with two weeks of doxycycline, treat only patients in whom erythema
migrans develops, and treat only patients with erythema migrans or a positive
serologic test for  Lyme disease one month after exposure.

RESULTS. Empirical treatment is the least expensive strategy and results in
the fewest cases of  Lyme  disease and the fewest complications when the
probability of Borrelia burgdorferi infection after a tick bite is 0.036 or
higher. For probabilities of infection below 0.036, empirical therapy
prevents most major complications, sequelae, and adverse events, but it
incurs additional minor complications, especially as the probability of
infection falls below 0.01.

CONCLUSIONS. Empirical treatment of patients with tick bites is indicated
when the probability of B. burgdorferi infection after a bite is 0.036 or
higher, and this treatment may be preferred when the probability of
infection ranges from 0.01 to 0.035. When the probability of infection after
a tick bite is less than 0.01, empirical therapy is not warranted.


SOURCE: The New York Times
September 13, 1992, Sunday, Late Edition - Final
SECTION: Section 13CN; Page 13; Column 1; Connecticut Weekly Desk
HEADLINE: More Tickborne Disease Found in State

   TWENTY years ago tickborne disease was almost unheard of in Connecticut.
But this summer the state has the highest rate of Lyme disease in the
nation, with more than 1,000 state residents becoming infected each year.

   Other diseases caused by ticks have also taken hold: babesiosis, a
malaria-like disease appeared in Connecticut in 1988 and is now firmly
entrenched in the state's southeast corner; as many as five new cases of
Rocky Mountain spotted fever are reported in the state each year, and
ehrlichiosis, a disease  spread by the brown dog tick that can infect people
and dogs, is also a threat.

    Research on tickborne diseases is a vital part of the work done by the
Connecticut Agricultural Experiment Station in New Haven, said Dr. Louis A.
Magnarelli, the state entomologist and chief of the research center's
entomology department.

Population Grows
    Scientists have documented that the population and geographic range of
the Ixodes dammini -- the tick that spreads Lyme disease and babesiosis --
have dramatically expanded in Connecticut, said Kirby Stafford 3d, a
scientist at the station specializing in tick ecology and control.

   At test plots monitored by state scientists in Salem, Haddam and Lyme,
there is evidence that the state's already large Ixodes dammini tick
population more than doubled from 1990 to 1991, Mr. Stafford said.  There
was also an increase reported in the population of American dog ticks, which
can spread Rocky Mountain spotted fever and possibly other diseases.

   Although Ixodes dammini ticks were once found only in coastal areas in
eastern Connecticut, the ticks are now found in every county of the state,
Dr. Magnarelli said.

   Farmers and long-time residents say it was a rare event to find a tick in
Connecticut 30 or 40 years ago, Dr. Magnarelli said. "Now ticks are very
abundant," he said.

Is  Lyme Disease  a Measure?
    Since 1976, when Lyme disease was first identified in Lyme and Old Lyme,
there has been a relatively rapid increase in the disease,  Dr. Magnarelli

   "We are looking at all the tickborne diseases in the state and we're
wondering if we are going to get the kind of increase in cases and geographic
spread that we've seen with  Lyme disease, " he said.

   Although Rocky Mountain spotted fever is a significant health problem in
North Carolina and {*filter*}ia, Connecticut seems to be on the far northern
range of the area presently affected by the disease,  Dr. Magnarelli said.
Very few of the state's American dog ticks are infected with the richoseal
agent pathogen, a bacterium with virus-like traits, which causes Rocky
Mountain spotted fever. But every summer there are at least two or three new
cases of the disease in the state and scientists cannot preclude the
possibility that the disease could become a more significant public health
problem in Connecticut, Dr. Magnarelli said.

   Only one case of ehrlichiosis, which affected a dog in Milford, has been
reported in the state.

Dual Infection
    A 44-year-old man from East Lyme was infected with both Rocky Mountain
spotted fever and babesiosis this summer. After suffering dangerously high
fevers, anemia and weakness, and displaying distinct brown speckles on the
arms and legs, which are characteristic of Rocky Mountain spotted fever, the
patient was treated with antibiotics and {*filter*} usually used for the treatment
of malaria.

   The first documented case of babesiosis in Connecticut was reported in
Stonington in 1988. The next year, eight people were found to the  disease
in Connecticut. Seven of the patients were residents of Stonington or Old
Lyme.  But it was reported that a man from central Connecticut acquired the
disease through a {*filter*} transfusion. As of last month, there were five cases
of babesiosis reported this year.

   Elderly people, people without a spleen and those have H.I.V., the virus
that causes AIDS, or people with otherwise compromised or impaired immune
systems are most at risk for babesiosis, according to Dr. Matthew Cartter,
chief of the epidemiology division of the State Department of Health Services.

   The illness is generally mild and its symptoms -- fever, chills, headache,
weakness and anemia -- may go unnoticed by healthy children or {*filter*}s.  The
disease  is believed to have contributed to the death of at least two elderly
residents of Stonington.

   A 1989 study in southeastern Connecticut found that as many as 9.5 percent
of people who have tested positive for Lyme disease also test positive for
babesiosis, Dr. Cartter said. A single bite from an Ixodes dammini tick can
spread both Lyme disease and babesiosis and doctors have been advised to look
for symptoms of babesiosis in people infected with Lyme disease,  he said.

Reforestation a Factor
    Early explorers and settlers reported that the forests of southern New
England were heavily infested with ticks in the 17th and 18th centuries. But
by the 1830's most of Connecticut's forests had been cleared for agriculture
and there were few host animals for the local tick population to feed on.
Consequently there were relatively small tick populations. But since the late
19th century, agriculture has been abandoned through most of Connecticut and
these farmlands have reverted to forest.

   The most important factor determining tick population is the number of
available host animals, Dr. Magnarelli said. Reforestation and the resulting
restoration of habitat for host animals, like the white-tailed deer and
white-footed mice, has caused an increase in tick populations. Warmer winters
and more humid summers are also factors that favor larger tick populations,
Mr. Stafford said.

   Tickborne diseases are not considered a major public health problem by the
State Department of Health Services, Dr. Cartter said. "With  Lyme disease we
are seeing an intense transmission of the disease in the original area where
we it was first found, and a very gradual spread of the disease to other areas
of the state."

   Other tickborne diseases, like babesiosis and Rocky Mountain spotted fever,
are not expected to become as significant a public health problem as Lyme
disease,  he added.


Questions will be distributed to subscribers for their thoughts, and
answers will be compiled in the next newsletter.
Topics may include treatment protocols, the recovery process, LD in
children, "strange" manifestations, requests for support group info,
insurance concerns, etc.

IV. ***** OP-ED SECTION *****

This section is open to all subscribers who would like to express an opinion.
This issue's commentary was printed in 4 Union County, NJ newspapers.

COMMENTARY - Marc Gabriel - January 3, 1993

   In 10 short years, over half a million people in the U.S. have been
infected with this serious disease.  It may be easily treated if it's
acknowledged early, but all too often it isn't recognized in time.  It's
debilitating effects include nervous system damage, severe musculoskeletal
pain and occasionally cardiac abnormalities.  And, if you live in the
Northeastern U.S., there's a good chance it's waiting for you in your back

   It's Lyme disease, and it's running neck and neck next with AIDS for the
dubious title of fastest growing infectious disease in the country.
Surprised?  Probably, as this disease hardly gets the press attention it
deserves given the staggering infection rate.  Many people still think that
LD is a rare shoreline disease even though infections are being chronicled
across New Jersey, in almost every state, and in Europe and Asia.

   The disease is a bacteria carried primarily by deer, mice, rabbits,
raccoons, dogs, horses, cattle and birds.  It is transmitted to humans and
other animals through the bite of a tick, which carries the disease between
species.  The primary tick vector is the deer tick, and it's as small as the
tip of a pencil.

   The tick bite is painless, thanks to its secretion of a chemical that
numbs the pain when it sinks its mouth in your skin.  Most LD patients never
see or feel the tick.  They only know they've been infected when the symptoms
crop up.

   If the disease is not promptly recognized, the cost of treatment can be
staggering.  A recent study found that the cost of LD to society is
comparable to the cost of AIDS (over $1 billion annually).  And the insurance
companies are running scared.

   Insurers are not interested in dealing with another expensive epidemic.
In their efforts to keep LD expenses down, they have enlisted the help of
some controversial doctors from around the state who deny that LD is a major
problem.  These so called "experts" have declared that LD is cured with 28
days of antibiotics.

   What a coincidence: a panel appointed by insurers has concluded that LD
does not require large expenditures.  What they don't tell you is that their
findings are disputed by LD specialists, patients, and new research.  Last
year several published papers refuted the 28 day theory by documenting that
the bacteria can survive in the body after 28 days of antibiotics.

   Despite these findings, the insurers are sticking to their highly disputed
theory.  They routinely deny treatment to sick patients using the 28 day
theory to justify their actions.  My former insurer, the RCHP HMO, even went
a step further.

   They spent long hours trying to convince me that I wasn't infected.  They
referred my to a psychologist, implying that I was making up the symptoms.
They only agreed to treat me after I was properly diagnosed at the world
renowned SUNY Stony Brook Lyme Disease Center on Long Island.  After 6 weeks
of treatment (they told me they were being generous), they refused to pay for
my follow-up treatment with a Lyme specialist.  They also refused to pay the
Stony Brook bill.

   I was lucky.  I have met patients that have shouldered thousands of
dollars of bills, including prohibitively expensive intravenous therapy.
Some have even contemplated filing for Chapter 11 bankruptcy.

   New Jersey state Senator John Bennett (R-Monmouth) caught on to this
injustice and proposed a bill that would stop insurers from denying patients
coverage.  The bill, introduced last November,  states that insurers must pay
for LD treatment that is deemed necessary by the patient's doctor.  The bill
(S-1297) was well received and ready for a vote in December until the
insurers tossed a bombshell into the arena.

  They had an amendment submitted that would create a "triangular committee"
that would "review" a doctor's request to have treatment prolonged after 28
days.  The committee would consist of the doctor, a representative from the
Department of Health, and a representative from the insurance company.

   This is simply {*filter*}.  What doctor has the time to waste a full day in
Trenton with a "triangular committee" for every chronic LD patient they
treat?  My doctor treats so many LD patients that he might have to relocate
to an office adjacent to the Health Department in Trenton if this amendment
were to pass.

   In addition, are we to expect that the representatives from the Health
Department and the insurer will suddenly agree to prolonging treatment?
New Jersey's state Health Department has one of the worse records in the
country when it comes to LD.  They would prefer to deny LD is a problem so
they can continue to turn a blind eye to the epidemic.  This makes them
inclined to believe the 28 day theory.  The physician is outnumbered 2 to 1.

   It is imperative that S-1297 be passed with no amendments.  Please urge
your state senator to support this bill.  Otherwise, all of New Jersey's
insurers will receive a signal that it is OK to arbitrarily deny expensive
treatments to ill patients.  Doctors would have their judgments constantly
questioned by fat bureaucracies who are out to save a few bucks.

   That would threaten the integrity of New Jersey's health insurance
system, set a dangerous national precedent, and turn costly illnesses like
Lyme disease into financial death sentences.


The following list of references was complied by Carl Brenner and John
O'Donnell.  We will present a few every week for the next few issues of
the LymeNet newsletter.

Steere, AC. Lyme Disease. N Engl J Med 1989;321:586-596 (Rather dated by now,
but a good intro to the mainstream paradigms in Lyme research).

Reik, Louis. Lyme Disease and the Nervous System (book). 1991, Thieme Medical
Publishers (also rather dated, but a treasure trove of references on

Logigian EL, Kaplan RF, Steere AC. Chronic neurological manifestations of
Lyme Disease. N Engl J Med 1990;323:1438-44.

Dattwyler RJ et al. Seronegative late Lyme borreliosis dissociation of Bb
specific T and B cell responses following antibiotic therapy.  N Eng J Med

Garcia-Monco JC, et al. Bb in the central nervous system: experimental and
clinical evidence for early invasion. J Infect Dis 1990;161:1187-1193

Halperin JJ, Volkman DJ, Wu P. Central nervous system abnormalities in Lyme
borreliosis. Neurology 1991;41:1571-1582

On transplacental transmission:

MacDonald A. The Southampton Hospital fetal borreliosis study. Rheum Dis Clin
N Am 1989;15:663-667.

Lavoie PE, et. al. Culture positive, seronegative transplacental Lyme
borreliosis. Arthritis Rheum [Suppl] 1987;30:S50.

On persistent infection after treatment:

Preac-Mursic V, Survival of Bb in antibiotically treated patients
with Lyme borreliosis. Infection 1989;17:355-359

Liegner K, Culture-confirmed treatment failure of cefotaxime and
minocycline in a case of Lyme meningoencephalomyelitis in the United States.
Abstr. #63, Fifth Int'l Conf on Lyme Borreliosis, Arlington, VA 1992

Masters, E, Spirochetemia two weeks post cessation of six months of
continuous p.o. amoxicillin therapy. (Abstr. #65, same conference).

VI. ***** JARGON INDEX *****

Bb - Borrelia burgdorferi - The scientific name for the LD bacterium.
CDC - Centers for Disease Control - Federal agency in charge of tracking
      diseases and programs to prevent them.
CNS - Central Nervous System.
ELISA - Enzyme-linked Immunosorbent Assays - Common {*filter*} antibody test
EM - Erythema Migrans - The name of the "bull's eye" rash that appears in
     ~60% of the patients early in the infection.
IFA - Indirect Fluorescent Antibody - Common {*filter*} antibody test.
LD - Common abbreviation for Lyme Disease.
NIH - National Institutes of Health - Federal agency that conducts medical
      research and issues grants to research interests.
PCR - Polymerase Chain Reaction - A new test that detects the DNA sequence
      of the microbe in question.  Currently being tested for use in
      detecting LD, TB, and AIDS.
Spirochete - The LD bacterium.  It's given this name due to it's spiral
Western Blot - A more precise antibody test.


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LymeNet - The Internet Lyme Disease Information Source

Advisors: Carol-Jane Stolow, Director
          William S. Stolow, President
          The Lyme Disease Network of New Jersey (908-390-5027)



             Marc C. Gabriel '93    -  U.C. Box 545  -
               (215) 882-0138        Lehigh University

Mon, 17 Jul 1995 10:39:20 GMT
 [ 1 post ] 

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