Scott - The findings that you are citing are based on highly inaccurate testing. The below letter explains things well. It is written by a top Lyme expert. IMO, doctors who treat chronic lyme disease are true heroes. This is written by a brilliant doctor whom I had the pleasure of meeting and who has been saving lives for over 30 years.
"Physicians who have cared for persons with chronic
Lyme disease have faced harassment at a minimum and for
some, their careers have been ruined. Researchers who have
seriously dedicated themselves to the scientific study of
chronic Lyme disease in humans and/or animals have often
found themselves attacked or marginalized. To persist in
their researches would have resulted in virtual career
suicide and some have been forced, by exigencies of
survival, to leave the field. Laboratories that test
extensively for Lyme disease, including use of direct
detection methods such as PCR, have found themselves
subjected to concerted smear campaigns and harassed.
Whereas PCR is a well-accepted method in virtually all
other infectious diseases, its clinical use for Lyme
disease has also been marginalized. Direct detection
methods developed more than a decade ago by some of this
country’s finest physician-researchers and biomedical
research scientists (Dorward DW, Schwan TG, Garon CF.
Immmune Capture and Detection of Borrelia burgdorferi
Antigens in Urine, Blood, or Tissues from Infected Ticks,
Mice, Dogs, and Humans. J Clin Microbiol 1991;29:1162-1170
& Coyle PK, Deng Z, Schutzer SE, Belman AL, Benach J,
Krupp L, Luft B. Detection of Borrelia burgdorferi antigens
in cerebrospinal fluid. Neurology 1993;43:1093-1097 & Coyle
PK, Schutzer SE, Deng Z, Krupp LB, Belman AL, Benach JL,
Luft BJ. Detection of Borrelia burgdorferi-specific antigen
in antibody-negative cerebrospinal fluid in neurologic Lyme
disease. Neurology 1995;45:2010-5) have been moth-balled, I
believe, for political and medical socioeconomic reasons.
Seronegativity, a well-recognized feature of
spirochetal disease (e.g. in syphilis) is held to not need
consideration despite early recognition of this phenomenon
in Lyme disease, ironically, by a signer of the 2000 and
2006 IDSA Lyme disease guidelines (Dattwyler RJ, Volkman
DJ, Luft BJ, Halperin JJ, Thomas J, Golightly MG.
Seronegative Lyme Disease. Dissociation of T- and B3
Lymphocyte Responses to Borrelia burgdorferi. N Engl. J Med
1988;319:1441-6).
That there is no active support by the Federal
government for training programs for pathologists or
support for pathologic laboratories for in-depth pathologic
study of tissues from humans with chronic Lyme disease
using all available methods (and which, hopefully, might
develop new and superior methods) indicates a choice to
remain in ignorance. There could and there should be one
or more such laboratories of highest scientific calibre
where such methods could be made available to clinicians
and researchers and their patients, comparable to the Armed
Forces Institute of Pathology, which has been known for
excellence in the study of syphilis.
A key formative influence in the creation of the
National Institutes of Health was Metropolitan Life
Insurance Company (Harden VA. Inventing the NIH. Federal
Biomedical Research Policy 1887-1937.Johns Hopkins
University Press. 1986. pp.57-59,114 & 122). It would be
naïve not to consider the possibility of ongoing behind the
scenes influence of the insurance industry on N.I.H.
policy.
Honest review of the worldwide peer-reviewed
scientific literature reveals an abundance of evidence for
the existence of chronic Lyme disease in humans and
animals. Much of this evidence was presented to the Lyme
Disease Review Panel of the Infectious Diseases Society of
America on July 30, 2009. Regrettably, the panel chose to
sustain the 2006 IDSA Lyme Disease Guidelines. IDSA
leaders were defiant from the outset asserting the
Connecticut Attorney General could make them review the
guidelines but that he couldn’t make them change them. In
retrospect it was a serious strategic error to leave the
review process within the hands and ultimately under the
control of the IDSA itself.
The standard of care set by the IDSA 2006 Lyme disease
guidelines is one of medical neglect of persons suffering
from chronic Lyme disease. However, such guidelines are
indeed useful. They serve to shield from liability
physicians who neglect persons with chronic Lyme disease.
By misusing CDC case surveillance criteria as the sole
basis for a clinical diagnosis of Lyme disease, these
guidelines serve the insurance industry very well indeed
because such cases represent but the tip of the iceberg of
actual cases of Lyme disease, whether acute or chronic.
Denial of the possibility of seronegative Lyme disease,
likewise serves the insurance industry well and also such
simplistic constructs for Lyme disease also serve those
4
physicians who cannot wrap their minds around the true
complexity of this illness.
The medical profession and the United States Public
Health Service, predecessor to the CDC, have a long history
of medical neglect of persons suffering from spirochetal
infection. The profession and the USPHS were completely
unable to reform themselves from within in this regard.
It required moral and political intervention from without
to bring the Tuskegee Experiment to an end with Senator
Edward Kennedy’s hearings in February and March, 1973
before Committee of Labor and Public Welfare’s Sub-
Committee on Health (Jones JH. Bad Blood: the Tuskegee
Syphilis Experiment – a tragedy of race and medicine. The
Free Press. New York. 1981 pp. 213).
The Tuskegee Experiment involved about 400 subjects.
Lacking the taint of racism, nonetheless the “mainstream”
handling of chronic Lyme disease affects far more people;
it would be a fair estimate to say, Tuskegee X 10,000 in
the United States alone. Furthermore, the standards held
out by the CDC and the IDSA have worldwide influence.
Canadians are unable to get care for chronic Lyme disease.
We are seeing significant numbers of persons with chronic
Lyme disease forced to leave Canada for care.
State legislators have begun taking matters into their
own hands and the states of Rhode Island, Connecticut,
California, New York, Massachusetts and Minnesota have
passed laws or promulgated policies protecting physicians
who treat persons with chronic Lyme disease. Are these
legislators stupid? Are they dupes of Lyme activists? Or
can they see what is so obvious to the patients and to any
good clinician, that Lyme disease can be a chronic
infection that often requires a long-term treatment
approach? Furthermore, as the disease spreads and more and
more individuals are affected, legislator’s staffers, their
wives, their children and they themselves are experiencing
the effects of chronic Lyme disease.
In the fullness of time, the mainstream handling of
chronic Lyme disease will be viewed as one of the most
shameful episodes in the history of medicine because
elements of academic medicine, elements of government and
virtually the entire insurance industry have colluded to
deny a disease.
This has resulted in needless suffering of many
individuals who deteriorate and sometimes die for lack of
timely application of treatment or denial of treatment
beyond some arbitrary duration.
I am forwarding by mail copies of two of my abstracts
and several published articles concerning such individuals
for each panel member as I do not have these in PDF format
(Liegner KB, Rosenkilde CE, Campbell GL, Quan TJ, Dennis
DT. Culture-confirmed treatment failure of cefotaxime and
minocycline in a case of Lyme meningoencephalomyelitis in
the United States [abstract]. Programs and abstracts of
the Fifth International Conference on Lyme Borreliosis,
Arlington, VA, May 30-June 2, 1992. Bethesda,MD: Federation
of American Societies for Experimental Biology; 1992:A11.
& Liegner KB, Duray P, Agricola M, Rosenkilde C, Yannuzzi
L, Ziska M, Tilton R, Hulinska D, Hubbard J, Fallon B. Lyme
Disease and the Clinical Spectrum of Antibiotic-Responsive
Chronic Meningoencephalomyelitides. J Spirochetal and Tickborne
Dis 1997;4:61-73 & Liegner KB. Lyme Disease: The
Sensible Pursuit of Answers. (Guest Commentary). J Clin
Microbiol 1993;31:1961-1963 & Liegner KB & Jones CR.
Fatal progressive encephalitis following an untreated deer
tick attachment in a 7 year-old Fairfield County,
Connecticut child. [Abstract] VIII International Conference
on Lyme Disease and other Emerging Tick-borne Diseases,
Munich, Germany, June 1999 & Liegner KB, Shapiro JR,
Ramsay D, Halperin AJ, Hogrefe W, Kong L. Recurrent
Erythema Migrans Despite Extended Antibiotic Treatment with
Minocycline in a Patient with Persisting B. burgdorferi
Infection. J Amer Acad Derm 1993;28:312-4.).
