Table of Contents:
LA TIMES: NIH Chief Announces Plans to Resign
ABSTRACT: (Lancet) Balance of Synovial Fluid IL-1[beta] and IL-1
Receptor Antagonist and Recovery From Lyme Arthritis
ABSTRACT: (Clin Exp Rheumatol) The Effects of 20 Weeks of Physical
Fitness Training in Female Patients With Fibromyalgia
ABSTRACT: (Arthritis Rheum) Low levels of Somatomedin C in Patients
With the Fibromyalgia Syndrome. A Possible Link Between Sleep
and Muscle Pain.
ANSWER: How Accurate are LD Tests?
ANSWER: What is the Prognosis for Chronic LD?
DISCUSSION: Lyme Disease for dogs
FEATURE: Open Letter from Diane Betz
* Lyme Disease Electronic Mail Network *
* LymeNet Newsletter *
Volume 1 - Number 04 - 3/03/93
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, Contribute and Get Back Issues
I. ***** INTRODUCTION *****
Thanks to all who wrote and expressed opinions on the LymeNet's
format. By an overwhelming majority, you voted to keep this group to
a "formal" newsletter with a frequency of about once every 10-15 days.
There was also significant support to "gate" this listserv group to an
Internet Usenet group. I will investigate this option soon.
I would also like to announce that FAX delivery of this newsletter will
be made available in the next few weeks. Now that I have upgraded my modem
to something vaguely resembling the state of the art, I can send FAXes
directly from my PC. I will have to charge FAX recipients, however, to
cover the cost of the 1 am phone call. I will figure out the rates a little
later. If you know someone who might be interested in this form of
delivery, send me a note.
II. ***** NEWS FROM THE WIRES ******
SOURCE: Los Angeles Times
DATE: February 27, 1993, Saturday, Home Edition
SECTION: Part A; Page 18; Column 1; National Desk
HEADLINE: NIH CHIEF ANNOUNCES PLANS TO RESIGN
Dr. Bernadine P. Healy, the first woman to head the National Institutes
of Health, is resigning at the request of Clinton Administration officials,
ending a tenure marked by controversy over her strong stands and sometimes
But the Administration will retain another top health officer held over
from the George Bush Administration, Food and Drug Administration
Commissioner David A. Kessler, the Department of Health and Human Services
In a meeting several weeks ago with HHS Secretary Donna Shalala, "it was
made clear that it would be best for the President to choose his own NIH
director," Healy said Friday at a press conference. She said she had not met
with President Clinton.
Healy will remain at the NIH until June 30, while the Administration
searches for a successor, and then is expected to return to her former job
with the Cleveland Clinic Foundation, a medical and research facility in
Ohio, where she was chairwoman of the research institute and a staff member
in the cardiology department.
While it is not surprising that an incoming Administration -- particularly
of another party -- would seek to fill top jobs with its own people, the NIH
director's post traditionally has been immune to shifts in political power.
But Healy, 48, a cardiologist appointed by Bush in March, 1991, has come
under heavy criticism from members of the scientific community and lawmakers
who believed she brought politics into her job as head of the world's premier
biomedical research facility.
She was criticized, for example, for supporting the Bush Administration's
ban on federally funded fetal tissue research -- originally imposed by the
Ronald Reagan Administration -- after having opposed it before she came to
Although she continued to insist after taking the NIH job that her
personal views on fetal tissue research had not changed, she nevertheless
obeyed a White House order to lobby against legislation that would have
overturned the ban -- and many hold her responsible for Congress' inability
to override a Bush veto.
Healy acknowledged Friday that "the fetal tissue issue dogged NIH the
whole way," saying it was unfortunate that the agency had been drawn into the
abortion debate. "NIH has become a bit of the Beirut of abortion and of fetal
tissue," she said.
She also reportedly irritated Clinton Administration officials by lobbying
hard to keep her job.
HEADLINE: Balance of synovial fluid IL-1[beta] and IL-1 receptor antagonist
and recovery from Lyme arthritis.
AUTHORS: Laurie C. Miller, Elizabeth A. Lynch, Sana Isa, James W. Logan,
Charles A. Dinarello, Allen C. Steere
REFERENCE: Lancet 1993; 341:146-48 (Jan 16 '93 issue)
Borrelia burgdorferi, the causative agent of Lyme disease, is a potent
inducer of interleukin 1[beta] (IL-1[beta]), the cytokine implicated in the
pathogenesis of inflammatory arthritis. The balance between IL-1 and the IL-
1 receptor antagonist (IL-1ra), a naturally occurring inhibitor of IL-1,
might influence disease expression. To explore this possibility, we have
done a retrospective study that compared the clinical course of Lyme
arthritis in 83 patients with concentrations if IL-1[beta] and IL-1ra in the
patients' synovial fluid. Patients with high concentrations of IL-1ra and
low concentrations of IL-1[beta] had rapid resolution of attacks from
arthritis, whereas patients with the reverse pattern of cytokine
concentrations had long intervals to recovery. Thus, the balance between
synovial fluid IL-1[beta] and IL-1ra concentrations relates to the time to
recovery from an episode of Lyme arthritis.
Sender: "Lloyd E. Miller" <[email protected]>
Subject: items of interest
I have come across some items that although not specifically dealing with
Lyme disease may have some relevance.
REFERENCE: Mengshoel AM, Komnaes HB, Forre O: The effects of 20 weeks of
physical fitness training in female patients with fibromyalgia. Clin Exp
Rheumatol 1992; 10(4):345-9.
ABSTRACT: During a period of 20 weeks 18 female patients with fibromyalgia
participated in a 60-minute exercise program twice a week. A control group,
comprising 17 patients, was told not to change their physical activity level.
Eleven patients in the training group and fourteen in the control group
completed the study. The results at entry were compared to those after 20
weeks, as well as being compared to the results of the control group.
**No statistically significant changes or differences in general pain, pain
coping and fatigue were seen after 20 weeks.** Improved dynamic endurance
work performance for the upper extremity was found, however, in the training
group, measured as the strength of the first (p = 0.01) and the last
repetition (p =0.003). These results differed from the results of the
control group (p = 0.02 and p = 0.003). **It is concluded that fibromyalgia
patients may undergo low-intensity dynamic endurance training without
experiencing exacerbation of their general pain and fatigue symptoms.**
LYME COMMENT: [Exercise done under controlled conditions is recommended for
patients with chronic Lyme disease. This article would indicate that the
exercise may not have much effect on the pain symptoms. Maybe more important,
it indicates that exercise was tolerated without exacerbating symptoms.
Therefore, exercising and physical therapy to help maintain body condition in
chronic Lyme patients would seem like a good idea. It would be interesting to
know if Lyme patients are finding this to be the case.]
REFERENCE: Bennett RM, Clark SR, Campbell SM et al: Low levels of somatomedin
C in patients with the fibromyalgia syndrome. A possible link between sleep
and muscle pain. Arthritis Rheum 1992;35(10):1113-6.
OBJECTIVE. Fibromyalgia is a common syndrome of musculoskeletal pain and
fatigue. Lacking distinctive tissue or laboratory correlations, it has often
been considered a form of "psychogenic rheumatism." In the present study,
the notion that the stage-4 sleep anomaly typically seen in the fibromyalgia
syndrome may disrupt growth hormone secretion was tested. Because growth
hormone has a very short half-life, serum levels of somatomedin C were
measured; somatomedin C is the major mediator of growth hormone's anabolic
actions and is a prerequisite for normal muscle homeostasis.
METHODS. Serum levels of somatomedin C were measured in 70 female
fibromyalgia patients and 55 healthy controls, using a peptide-specific
RESULTS. Significantly lower levels of somatomedin C were observed in the
fibromyalgia compared with controls (mean +/- SD 124.7 +/- 47 ng/ml
versus 175.2 +/- 60 ng/ml; P = 0.000001). These results could not be explained
by concomitant therapy or by weight, and in a subset of 21 patients in whom
this was investigated, there was no correlation with various indices of
CONCLUSION. These findings indicate that there is a distinctive disruption
of the growth hormone-somatomedin C neuroendocrine axis in a majority of
fibromyalgia patients. It is hypothesized that this abnormality may explain
the link between disturbed sleep and predisposition to muscle pain.
LYME COMMENT: [Fibromyalgia in some circles is considered a psychological
disease (as is Lyme). Here a measurable parameter is considered as a possible
explanation for some of the symptoms of fibromyalgia. Are there measurable
parameters of this nature identifiable in Lyme patients? Can any of them be
linked to the persistence of Bb? Is anyone out there looking for this kind of
information? This kind of information will help explain the chronic nature of
the disease in many patients.]
III. ***** QUESTIONS 'N' ANSWERS *****
Sender: [email protected] (John Setel O'Donnell)
Subject: Responses to various questions...
>How accurate are the various tests for Lyme disease? For each test, what
>is the proportion of negatives that are false and what is the proportion
>of positives that are false?
There are several problems with the current Lyme tests.
1) Most important, the tests currently available to clinicians are antibody
assay tests. They measure your immune response to the spirochete. This
is a major problem because the spirochete grows exceptionally slowly and
evades the immune system in a variety of ways. Many people never mount
a significant antibody response. For those who do mount an antibody
response, it can take months or years.
2) The tests are not well characterized, standardized, or repeatable. The
First FDA/CDC Conference on Lyme Disease Testing (11/90) found most
tests in the "acceptable to poor" range. Even if you have an antibody
response, it may not be detected by the test you are given.
Most of the problems with the tests are false negatives. False positives
have been documented in some of the older antibody tests in cases where
patients had existing syphilis or relapsing fever. The false positives have
been much more widely commented on than the false negatives; however, I
am unaware of any research documenting false positive responses in the
absence of other serious infection.
There is new test technology on the way. Several tests are available to
researchers (but not yet to clinicians) which directly test for the bacteria.
PCR (Polymerase Chain Reaction) has been shown to be very sensitive,
and, done properly, to give a high degree of confidence in positive results.
Unfortunately the base technology is still in patent litigation; nobody can
sell test services based on PCR for money. The Rocky Mountain Labs gold
stain test has been licensed to several companies. In another year or two
things should be much improved.
However, the tests are never going to solve the problem. Research has
shown the bug to have long latency periods, and to hide in places where
it's hard to detect, including the central nervous system and inside skin
cells. Many people with active infection have very few circulating bugs.
To some extent, the diagnosis will always have to be a clinical diagnosis;
but improved test technology should greatly improve the current
situation, in which Lyme is grossly under diagnosed.
References are available in Section V.
>Have studies been done to see what groups are more susceptible
>to chronic Lyme disease problems (e.g., chronic arthritis)?
>For instance, do the elderly or out-of-shape people have a better
>chance of having long term LD problems?
Allen Steere reported a genetic marker (HLA-DR2 and HLA-DR4) for
people who are more susceptible to chronic Lyme problems. [N Engl J
Med 1990; 323:219-23]
Dr. Joseph Burrascano reported in an address at the 1992 State-of-the-Art
Conference on Lyme that women are more likely to have trouble than men;
teenage girls are at particular risk. Also, he said that the elderly are more
likely to suffer systemic complications and/or death from Lyme than other
populations. This matches my anecdotal observations from Lyme support
groups; the women seem more likely to have the awful neurological stuff,
including peripheral neuropathies and encephalitis. There was one ex-
cheerleader teenage girl in one of the CT Lyme support groups I used to go
to who was paralyzed from the mid-torso down; over a year of IV and
antibiotic therapy she improved markedly, but is still seriously disabled.
>What is the optimal drug, dosage, and duration to treat LD?
This is the subject of great controversy. Here's my advice:
- Ignore Steere's published protocols. Others have found very high relapse
rates; I've heard he doesn't follow them with his own patients.
- The two best references are Dr. Joseph Burrascano's treatment protocols
(included in the Physicians' Packet available from the Lyme Disease
Foundation - 203-871-2900) and Dr. Kenneth Liegner's protocols (see his
"Minocycline in Lyme Disease" paper (reference in Section V)).
- Dr. Paul Lavoie has also published protocols I respect.
All 3 agree on a few things:
- Very high dosages and penetrating antibiotics are required to avoid
relapse. The bug gets into the CNS and tissues, areas not well reached
by lower doses of most antibiotics. Serum levels are not adequate
predictors of elimination.
- Period of therapy is as important as dosage. The bug grows very slowly
and is vulnerable primarily when it is dividing. TB, with a similar rate of
growth and with similar tissue-hiding characteristics, is usually treated
for ONE YEAR. The 30-day recommendations for late Lyme are simply
absurd; they come with a handy catch-phrase, "fibromyalgia", to account
for their high failure rate.
>Is it possible that dogs can be carriers and suffers
>of LD? Just because LD is not prevalent or a widespread problem in a given
>area; what is it in the minds of vets and MDs alike that disqualifies LD
>as a possible medical problem. Our vet didn't and wouldn't even test for
>LD on our dog. There have been a few ("very few") cases of LD reported in
Northern California is one of the growth areas for Lyme. Yes, dogs,
horses, cows all get Lyme, and all can be pretty seriously disabled from it.
Veterinarians have done some of the best Lyme research in the last
few years. Fort Dodge Labs makes a vaccine for dogs; they've sold several
>My other question - Is there a list of MDs by area/state/city that are LD
>conversant/knowledgeable and sensitive to LD suffers? Or has anyone
>thought of creating such a list?
YES! Call 1-800-886-LYME, or (203) 871-2900. The Lyme Disease
Foundation has a Physician Registration Program, and maintains a
database of clinicians actively working on and knowledgeable about Lyme.
They give referrals. This is an incredibly important service, since the
state of general physician education about Lyme is pretty terrible.
Sender: [email protected] (Joe Wells)
Subject: Lyme vaccine
[Jim Eshleman <[email protected]> says:]
"Did you know there is a LD vaccine available for dogs?"
...which inspires all sorts of questions in my mind. If there is a Lyme
vaccine for dogs, why not humans? Is it because there is none that is
effective, or the expense is too great, or the risk of Lyme infection from
the vaccine is too great, or what?
Sender: [email protected] (Morris Bullock)
Subject: Lyme Disease for dogs
I just got your message noting that there is a Lyme Disease vaccine
for dogs. That is true, but as far as I know, there is NO evidence
that it is at all effective. Sure the vets push it, because it makes
them lots of money, but all that says is that veterinarians are no
more ethical than a lot of physicians in trying to make a fast
profit over the suffering of dogs or people who have Lyme Disease.
The good news is that dogs do respond very well to amoxicillin.
We live on Long Island and both of our Labrador retrievers have had
Lyme disease. Our older one (7 years old at the time) had very
obvious symptoms, in terms of losing all his energy and just laying
around and being lethargic. Fortunately, he did respond very well
and promptly to the antibiotics. I wouldn't advise anyone to
believe in a vaccine for Lyme Disease yet, not for people or for dogs,
unfortunately. I just wish that people would have as reliable results
in getting better from Lyme Disease as our dogs did!
IV. ***** OP-ED SECTION *****
The following letter appeared in the January 1993 issue of "LymeLine," the
newsletter of the Lyme Disease Network of NJ.
Let me introduce myself. I am a mother of a family in which all four
members have Lyme Disease. I call you friends because I believe all Lyme
patients and their supporters are bound by a special community of care and
concern. What happens to one of us has a direct impact on all of us as we
struggle to be well, preserve our rights, and live happy, productive lives.
I would like to tell you about my daughter Meg. Meg was a vivacious, active
child who excelled in school, played travel soccer, volunteered in a shelter
for disadvantaged children, and was active in student government and social
She was a freshman at the University of Delaware where she hoped to discover
how she could make the world a better place. She has a social life that
would rival that of a celebrity. Meg had an incredible zest for life and
laughter that few of us will ever approach. Her own proclaimed motto was
"Don't sleep too long, walk too fast, or forget to smile in the sun."
During her many lengthy hospital stays she sought out those sicker or less
ambulatory and would go to any length of silliness or sympathy to cheer them
up. When she was bed ridden and unable to get up she would amuse her
roommates and visitors with wry observations and witty impersonations of
people they knew.
She could never stand to see someone sad or hurt and not try to help.
She never knew a stranger, only potential friends... of which she had an
amazing number. She always made time to be there for her friends when
they needed her. Meg had an incredible inner strength surpassed only by
her true, sincere belief in the goodness of her life. She was a person you
would like to know.
Meg died three weeks before her nineteenth birthday of cardiac arrhythmia
brought on by Lyme Disease.
You cannot give Meg back to her mom, dad, and sister. You cannot erase the
pain, fill the gap in our lives, or ease the longing in our hearts to have
her with us. But you _can_ help us prevent this from happening to another
person with Lyme Disease. _Please_ take the time to write to your Senators
and Congressmen urging them to support and promote legislation for Lyme
Disease research and funding.
_Please_ write to the CDC and the NIH and make your plight and your concerns
known. Don't allow another Lyme death to occur. It is up to us to keep this
issue in front of them and insist that they address it.
It is up to us to make them admit and acknowledge the seriousness of this
illness. Please write today.
With heartfelt gratitude,
Diane D. Betz
V. ***** PARTIAL BIBLIOGRAPHY FOR FURTHER READING *****
Leigner, K., Garon, C., Dorward, D. Lyme Borreliosis (LB) studied with
the Rocky Mountain Laboratory (RML) Antigen Capture Assay in urine.
Abstract # 104, Fifth Int'l Conf. on LB, Arlington, VA, 1992.
Keller et al., PCR Detection of Bb [Borrelia burgdorferi] DNA in
cerebrospinal fluid of Lyme neuroborreliosis patients. Neurology 42; Jan 92;
Liegner, Kenneth B. Minocycline in Lyme disease. Journal of the American
Academy of Dermatology. FEB 01 1992 v 26 n 2 p 1, page 263.
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 antibody test
EM - Erythema Migrans - The name of the "bull's eye" rash that appears in
~60% of the patients early in the infection.
IFA - Indirect Fluorescent Antibody - Common antibody test.
LD - Common abbreviation for Lyme Disease.
NIH - National Institutes of Health - Federal agency that conducts medical
research and issues grants to research interests.
PCR - Polymerase Chain Reaction - A new test that detects the DNA sequence
of the microbe in question. Currently being tested for use in
detecting LD, TB, and AIDS.
Spirochete - The LD bacterium. It's given this name due to it's spiral
Western Blot - A more precise antibody test.
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