pt. 1 "The Dirty Truth Behind Lyme Disease Research"

georgia · medicine forum Guru Joined: 06 May 2005 Posts: 505

Fairfield County Weekly, May 20, 1999
"The Dirty Truth Behind Lyme Disease Research"

THE DIRTY TRUTH ABOUT LYME
DISEASE RESEARCH

While Lyme disease runs rampant, the medical community gets caught up
in an
elaborately twisted power struggle over technicalities.

By Stefanie Ramp

It's baffling that a creature barely larger than the period halting
this
sentence has compromised thousands of lives and instigated an
acrimonious
rift in the medical community. The tiny deer tick, which hosts and
transmits
the bacterium responsible for Lyme disease, is also at the center of an

elaborately twisted power struggle that challenges the established
myths
about the disease.

Nearly all researchers and clinicians agree on one thing: Early
detection
and treatment of Lyme disease results in a very high cure rate.

Most also agree that the illness can cause serious chronic problems in
some
patients, especially if the disease goes untreated in its early stages.

That, however, is where agreement -- and even polite disagreement --
gives
way to bitter contention in the medical community.
The crux of the controversy is a seemingly simple technicality -- the
question of whether or not chronic Lyme consists of persisting
infection or
merely persisting symptoms most likely fueled by a lingering
auto-immune
response originally triggered by the disease. But instead of what
should be
a cooperative and scholarly quest for the truth, politics, power and
greed
have polarized medical professionals, creating what one doctor called
"an
all-out war."

Biologically speaking, Borrelia burgdorferi (Bb), the spirochetal Lyme
bacterium, is an admirably crafty organism that can use its host's own
body
to escape eradication. According to Dr. Kenneth Liegner who's in
private
practice in Armonk, a group of researchers recently were able to detect
the
spirochete hiding inside cells using electron-microscopy.

In addition to its evasive nature, Lyme disease can be extremely
difficult
to detect using current diagnostic tests. The most common tests are
ELISA
and Western Blot, both antibody tests measuring the body's reaction, or
lack
of one, to Bb.Many doctors suggest that these tests are only accurate
30 to
40 percent of the time, and although the Centers for Disease Control
(CDC)
requires a positive test for surveillance purposes in reporting cases
of
Lyme disease, the CDC itself clearly states that its surveillance
criteria
should not be used for clinical diagnosis, but rather, Lyme should be
diagnosed based on a doctor's evaluation of symptoms with the tests
providing support.
The best hope on the horizon, particularly to demonstrate chronic
infection,
is a culturing test that is being developed by Greenwich's Dr. Steven
Phillips, who declined to be interviewed for this article. While many
researchers and clinicians believe the test has great potential,
Phillips'
limited study has yet to be definitively reproduced in other labs.

Without even marginally effective diagnostic tools, a haze of confusion
has
settled over doctors and patients alike, breeding misunderstanding and
mistrust. Whether or not to use CDC criteria for diagnosis, and whether
the
accompanying tests more often render false positives or false
negatives, is
where the diagnostic rift begins, leading to further conflicts over the

complexion of Lyme as a whole. Quipped Lyme patient Peter McFadden,
"Lyme
disease has got to be the most botched disease in modern medicine."

In 1996, Liegner performed a study of his practice to discover how well
the
CDC criteria would function in a clinical setting. The CDC surveillance

guidelines indicate that an ELISA should be performed and if the
results are
positive or borderline, then a Western Blot should follow. Liegner
found
that there were more people who had negative ELISAs and fully
diagnostic
Western Blots than people who had positive ELISAs and positive Western
Blots. "In other words, you're missing more people than you're finding
if
you follow the CDC's recommendations on how to test for Lyme disease,"
he
remarked.

While his study didn't include a statistically significant number of
patients, preliminary information stemming from a National Institutes
of
Health (NIH) study of chronic Lyme disease, using only definitively
diagnosed Lyme patients, is finding a similar pattern.

However, old habits die hard, particularly for the tradition-bound
academicians at research institutions like Yale. Numerous patients have

reported being told by Yale doctors that they didn't have Lyme only to
be
diagnosed with it at a later date in its more severe chronic stages.
Many
Yale physicians are also conservative in prescribing the long-term
intravenous antibiotic therapies which are increasingly thought to be
the
only option for people with recurring Lyme.

In part because Dr. Allen Steere, the physician credited with first
identifying Lyme in Connecticut (but not the discoverer of the disease
despite popular misconception), was on the Yale faculty at the time,
Yale
set the protocol for Lyme treatment (generally, a relatively short-term
oral
antibiotic therapy) and is still largely perceived as the beacon of
Lyme
wisdom. While everyone agrees that Yale doctors have done a great deal
of
valuable research on Lyme, many observers are now critical of Yale for
clinging to its conservative opinions and jealously guarding its
presumed
founder's rights to the disease.

Despite an expanding body of contradictory evidence, most
Yale-affiliated
Lyme physicians continue to believe that chronic Lyme is not due to
persisting infection and therefore refuse to sanction the long-term IV
antibiotic therapy, which many doctors and patients have found
effective in
treating chronic Lyme. Since there's not enough solid research to
support
either theory, it's not so much the conflict of opinion that Yale
critics
take exception to. Rather, it's the arrogant close-mindedness of Yale
doctors, who exclude every possibility, except those conceived by a
Yale
physician.

Without the diagnostic tools necessary to determine the existence of
chronic
infection, no answer to the antibiotic enigma seems impending, and many

patients are suffering in the process. Until more research can be done,

doctors are left with a lot of guess-work. As of now, treatment
protocol is
predominantly based on an individual doctor's beliefs about the nature
of
Lyme disease, anecdotal evidence and clinical experience.

Carl Brenner, one of two patients who sit on the National Institute of
Allergy and Infectious Diseases (NIAID) Advisory Committee for Clinical

Studies on Chronic Lyme, agreed that definitive research is decidedly
lacking. "It's a fairly new disease so there's not a whole lot of a
paper
trail. Early on in this disease, conclusions were jumped to which have
been
modified over time as a result of good science. But I think people in
any
scientific field are sometimes reluctant to let go of pet theories, and
I
think people on both sides of this controversy are guilty of that.

"It amazes me that people are so entrenched in some of their positions
given
that the data really isn't there to support them one way or another.
You
have a situation where people selectively call on data that agrees with

their position and ignore the data that doesn't. You can create a
pretty
good case for either side of this controversy. My interest is simply to
make
sure that enough data gets gathered so that we can get some momentum
towards
figuring what the true nature of this illness is."

ThomasForschner, executive director and co-founder of the Lyme Disease
Foundation, and many others suspect that potential liability may be
encouraging some doctors' stalwart resistance to the concept of chronic

infection and under-diagnosis. "If, in fact, these patients are
chronically
infected, and there's mounting evidence that this is a possibility,
some of
these doctors who have been going around obstructing patients'
treatment --
literally going out of their way to do that at times, and testifying
for
insurance companies etc. -- are potentially at risk for lawsuits."

Westchester County lawyer Ira Maurer, is, in fact, currently involved
with
litigation representing patients in precisely that position.
Many well-known academicians seem to have a corner on the research
grant
market as well, and Forschner added that "they may also be protecting
their
turf in terms of research dollars, too." Or perhaps, he concluded, they
may
just have a skewed experience with patients and truly believe that Lyme

isn't particularly serious and that patients really aren't chronically
infected.

Dr. Eugene Shapiro, a professor of Pediatrics and Epidemiology at Yale,
for
one, does not support arguments for chronic Lyme infection or the need
for
long-term antibiotics. "I don't believe there's any scientific evidence
that
more than one or two courses of antibiotics is necessary to eradicate
the
bacteria." In Shapiro's opinion, chronic symptoms are the result of an
auto-immune process rather than persisting infection in all but
extremely
rare cases when people weren't diagnosed and treated for many years.

Dr. Amiram Katz, a neurologist in private practice in Norwalk and
assistant
clinical professor of neurology at Yale, believes that denying the
possibility of persistent infection is counterproductive and ultimately

harmful. "In the textbook of pathology which every medical student
reads, it
is written that there is chronic Lyme...We know from syphilis [a
spirochetal
infection similar to Lyme disease] that this type of bacteria, the
spirochete, can be alive and persistent though at times dormant." Katz
suggested that refusing to accept the evidence for chronic infection is
"an
example of how people are going to an extreme and damaging both
themselves
and the patients.

"Some people have become over-sensitive and some people are stuck to
their
position, and they're not open to accepting other information and other

possibilities," Katz continued. "I ...

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From: Kathleen - view profile
Date: Sat, Jan 3 2004 2:40 pm
Email: kathleen.dick...@snet.net (Kathleen)
Groups: sci.med.diseases.lyme
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The truth is, we should be looking for changing IgM antibodies
but Steere et al changed their minds, and this was definitely
as a result of Insurance Companies, but also, ALDF was spawned
to facilitate the two enterpises.

The *intention* of the ELISA was to screen out Lyme.
That is, the ELISA intentionally misses most cases,
just as Liegner saw in practice.

Borreliosis is serologically like trypanosomiasis:

Eur J Neurol. 2003 Nov;10(6):711-9. Related Articles, Links

Human African trypanosomiasis: quantitative and qualitative
assessment of intrathecal immune response.

Lejon V, Sindic CJ, Van Antwerpen MP, Doua F, Dje N, Solano P,
Jamonneau V, Wouters I, Buscher P.

Department of Parasitology, Institute of Tropical Medicine,
Antwerpen, Belgium. vle...@itg.be

Quantitative and qualitative techniques for assessment of the
intrathecal humoral immune response in human African trypanosomiasis
were compared, and their diagnostic potential for detection of the
meningo-encephalitic stage of the disease was evaluated. Total and
trypanosome specific immunoglobulin G (IgG) and IgM intrathecal
synthesis were studied in paired cerebrospinal fluid (CSF) and blood
samples of 38 trypanosomiasis patients and in three controls using
Reiber's formulae. The presence of CSF-specific oligoclonal IgG and of
trypanosome-specific antibodies was determined using iso-electric
focusing followed by immunoblotting and antigen-driven immunoblots.
The intrathecal IgG fraction (16% positive) and oligoclonal IgG
detection (24% positive) were insensitive for detection of an
intrathecal humoral immune response. Trypanosome-specific IgG
synthesis, reflected by the IgG antibody index (AI) (26% positive),
was confirmed by the presence of oligoclonal specific IgG (47%
positive), but the latter was more sensitive. Although the detection
technique failed for oligoclonal IgM, the intrathecal IgM fraction
(42% positive) and the IgM AI (32% positive) indicated that the
meningo-encephalitic stage of the disease is characterized by a
dominant intrathecal IgM response, which was higher than the IgG
response. The highest combination of diagnostic sensitivity and
specificity for the meningo-encephalitic stage of trypanosomiasis was
observed for quantitative IgM determinations

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