LymeNet Newsletter vol#1 #14

Marc Gabriel marc at cnj.digex.com
Sun Jun 27 19:53:33 EST 1993


Please find a special edition of the LymeNet Newsletter enclosed.  The
newsletter is free; subscription information is found in the .sig of this
file.  

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*                  Lyme Disease Electronic Mail Network                     *
*                          LymeNet Newsletter                               *
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                      Volume 1 - Number 14 - 6/28/93

                           *** SPECIAL ISSUE ***
                      CHRONIC PERSISTENT INFECTION AND 
           CHRONIC PERSISTENT DENIAL OF CHRONIC PERSISTENT INFECTION
                              IN LYME DISEASE


I.   Introduction
II.  Special Section
III. Jargon Index
IV.  How to Subscribe, Contribute and Get Back Issues


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

Lyme disease has become a highly controversial and politically charged 
illness.  The issue that has probably generated the most controversy is
the existence and prevalence of persistent infection despite antibiotic
therapy. 

Most of the handful of physicians and researchers accorded LD "expert status"
by the national media dismiss chronic infection as an extremely rare and
insignificant phenomenon.  In fact, in Dr. Allen Steere's recent paper in
JAMA entitled "The Overdiagnosis of Lyme Disease," he refused to categorize
any of his 788 patients as chronically infected.  Chronic infection was
casually alluded to in the second-to-last paragraph of the 7 page paper.

The media accept these views as incontroverted fact, and physicians
are given the same message via the medical literature.  When patients
do not recover with the so called "accepted" protocols, they are referred
to psychologists as they are presumed to be imagining their symptoms.

However, a growing number of clinicians are rejecting the Steere et al
philosophy in favor of a model that recognizes chronic infection as a real 
problem.  Emerging research is validating what they see in their practices: 
many patients do not recover with the "accepted" protocols (typically no 
more than 4 weeks of treatment).

In this essay presented at the 6th Annual International Conference on Lyme
Borreliosis, Atlantic City, May 1993, Dr. Kenneth Liegner gives us his
perspective on this controversy.

Thanks to Contributing Editor Carl Brenner for obtaining reprint permission.

-Marc.


II. ***** SPECIAL SECTION *****

                           Kenneth B. Liegner, M.D.
                      Internal & Critical Care Medicine
                     Lyme Borreliosis & Related Disorders
                               8 Barnard Road
                              Armonk, N.Y. 10504

CHRONIC PERSISTENT INFECTION IN LYME DISEASE:

Relapsing disease is obvious to any good clinician and to Lyme patients.
Relapses usually respond to re-institution of antibiotic therapy. In some 
patients, Lyme disease is a chronic infection that antibiotic treatment 
suppresses, but does not eradicate.  Mechanisms of evasion of destruction 
of the organism by antibiotics and the immune system: intracellular 
sequestration; antigenic variation of surface proteins?; development of 
antibiotic resistance?; dormant states?; Bb DNA/RNA into host cells?; HLA-DR 
2,3,4 related molecular mimicry or evasion of humoral or cell-mediated 
immune response. 

Ample documentation of survival of _Borrelia burgdorferi_ in human 
beings despite intensive antibiotic treatment already exists in published 
peer-reviewed literature.  Isolation of organism in culture is rare 
(pre- _or_ post-treatment); this does _not_ mean the phenomenon is rare. 
Rather, these apparently anomalous observations give insight into what is 
happening with many other patients in whom we are NOT able to produce the 
incontrovertible level of proof provided by isolating the organism.  Direct 
antigen detection methods (RML-antigen capture in urine; OspA antigen 
detection in CSF) support the concept that _many_ patients have chronic 
persistent infection post-treatment (see Refs.).

PROBLEM: CHRONIC PERSISTENT DENIAL OF CHRONIC PERSISTENT INFECTION

Reasons for denial of chronic persistent infection:

1) Over-reliance on (presently very) imperfect tests.
This leads to _circular reasoning in Lyme disease_.  Fallacy that a negative 
Western blot vitiates the diagnosis of Lyme disease.

2) Paradigm change resisted. (see Kuhn, TS)

3) A "belief system" is involved, powerfully entrenched and resistant to
modification despite objective factual evidence.  This "belief system" 
filters _what_ is observed and _colours_ the  _interpretation_ of the 
_significance_ of what is observed such that the concept of chronic 
persisting infection is _rejected_ despite _overwhelming clinical evidence_ 
and _compelling_ emerging research findings.  This is testimony to the power 
of mental constructs.  Analogy to Galileo and the Catholic church: Catholic 
church only recently admitted it was mistaken in making Galileo recant, 
_300_ years later.

4) Adverse economic implications of chronic persistent infection: 
Long-term/open-ended treatment for a chronic infection becomes a "bottomless 
pit" and thus a true dilemma from the point of view of an employer/insurer/
government.  A readily curable infection, on the other hand, is a much more 
tractable entity, with predictable and controllable economic consequences. 
Thus, it is in the economic interests of insurers/employers/government to 
deny the reality of chronic persisting infection.  Liability issues for 
government/insurers/ and employers pertain and are aggravated by the 
implications of chronic persisting infection.

5) Chronic infection implies the _primary driving force_ in the pathogenesis 
of the illness is _ongoing infection_.  Thus, infectious disease treatment 
and prevention becomes the primary focus of research.  _Immunologic aspects 
become epiphenomena_; important epiphenomena, but epiphenomena nonetheless. 
The crucial issue is that we are dealing with an infectious disease, and 
_persistence of the infection is driving the immunopathogenetic processes_. 
Means to stay the infection and desirably "cure" the infection become the 
focus of attention.  Immunologic intervenentions to modify or arrest the 
expression of the disease, though also important, become _adjunctive_ 
measures.  Alternatively, if _post_-infectious _immunologic_ mechanisms are 
_primary_ in the pathogenesis of the disease, then _immunologic/
rheumatologic_ interventions become the _primary_ focus of research and 
treatment.

6) Acknowledgment of Lyme disease in a geographic region, and particularly
that it may be an incurable infection, has painful economic consequences to 
affected regions: tourism adversely affected, home values may decline, local
government may suffer a serious economic burden due to the high cost of 
treatment for employees covered under self-insured Workers' Compensation 
plans.

7) Seronegativity.  _Seronegativity is a real phenomenon_, occurring both in
early _and_ late cases.  This has been apparent to astute clinicians for some
time, and cutting-edge direct antigen detection assays are making this clear 
in black and white.  Seronegativity is difficult for many to accept or 
comprehend and has raised the spectre of mis-diagnosis and over-treatment 
of patients suspected of having Lyme disease.  This reinforces the denial of 
Lyme disease in individuals who may actually have it, by those who discount 
the importance or reality of patients' subjective experience of their 
illness.  Exclusion from study of seronegative subjects with symptoms 
compatible with Lyme disease in the past may represent a serious conceptual 
and methodological error.

8) Resources of government are already stretched thin by AIDS, multiply
resistant tuberculosis, and health sequelae of drug addiction and other 
societal problems.  _Funding for Lyme disease research, prevention, and 
treatment is grossly inadequate as a result_.  Restrictive surveillance


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