Sigal: "Misconceptions about LD" '02 
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 Sigal: "Misconceptions about LD" '02


Misconceptions about Lyme Disease: Confusions
Hiding behind Ill-Chosen Terminology

Leonard H. Sigal, MD

Pages 413-419

Ann Intern Med. 2002;136:413-419.

"The beginning of wisdom is to call things by their right names."
Ancient Chinese proverb

Nomenclature influences perceptions of reality and frames ensuing
Imprecision contributes to misinterpretation of observations and
studies, altering clinicians' approaches. The impact of imprecision
and novel reinterpretation of terminology
can be seen in the Lyme disease debate. A quarter century after its
initial description, a review of the terminology contributing to
confusion about Lyme disease is needed.

Lyme disease is treatable and curable with antibiotics (1-4),
especially if treated promptly,  usually with an excellent long-term
prognosis. The term "promptly" taken out of context suggests one
must treat without any delay. In fact, even untreated patients have
a good  prognosis. A 10- to 20-year follow-up of patients at Yale's
Lyme Disease Clinic from 1976 to 1983, many of whom were not treated
for early Lyme disease, shows that the   patients with erythema
migrans did not differ from normal controls in current symptoms,
physical findings, results of neuropsychological testing, or
responses to the Short-Form
   36 Health Assessment Questionnaire (5). However, significant
long-term sequelae  occurred in patients with untreated {*filter*} palsy
who probably had disseminated Lyme disease at initial evaluation and
probably required intravenous therapy (5).

"Chronic Lyme Disease": A Term in  Search of Definition

Despite this generally optimistic picture, claims of persisting
infection and antibiotic   unresponsiveness have contributed to
anxiety. "Chronic Lyme disease" (6, 7) is a common clinical
diagnosis in some geographic areas (8, 9) and is based on thinking
that is at odds with scientifically validated findings. No objective
physical findings or unique  historical features define "chronic
Lyme disease," a term used by support groups and  their few
physician allies, not the academic medical community. Although the
subject of much debate, "chronic Lyme disease" is not well defined.
The term is usually applied to  patients with symptoms, such as fatigue,
achiness, malaise, and
difficulty with concentration and memory, after treatment of documented Lyme
or illnesses  thought to be Lyme disease, or in patients without
preceding illness (9). Once the term  Lyme disease is applied, it is
Lyme disease, forever and irrefutably, a diagnosis often
"reaffirmed" by cross-referral between "Lyme literate" physicians.

Many patients receive repeated courses of antibiotics, with
transient or waning responses, leading to more or a combination of
antibiotics. Occasionally, this course of  treatment can go on for
years, with little relief. Originally, "chronic" was used in the
context of Lyme arthritis, which, in the era before it was
determined that Lyme disease was responsive to antibiotics,
persisted for years, finally resolving spontaneously (10).
Antibiotics are of proven value for Lyme arthritis (11); treatment
of early Lyme disease  usually prevents arthritis.

A Nexis-Lexis review reveals that "chronic" was first applied to
Lyme disease in 1985:  Lyme disease was "a potentially chronic and
debilitating illness transmitted by tick bites"  (12). In 1986,
"chronic" referred to outcomes if antibiotics were not administered
(13). A letter to the editor by Drs. Falvo and Nadelman urged more
support for research: Lyme disease could cause "birth defects, fetal
death, unilateral blindness, and chronic   debilitating arthritis"
(14) (the first and second occurrences still unproven, the third
rare,  and the last well reported). An adjective appropriate for
Lyme arthritis before the  identification of antibiotic
responsiveness (1, 2, 10, 11) was used to describe patients not
responding to antibiotics, suggesting that antibiotics do not kill
Borellia burgdorferi.

Some Internet sites, support and advocacy groups, and some
clinicians claim that the truth is deliberately being obscured: that
"chronic Lyme disease" is far more common than  the authorities
allow us to know; antibiotics are often not curative; infection can
be controlled only by long-term antibiotic therapy, often more than
insurance companies  allow; serologic tests are inaccurate and often
yield falsely negative results, thereby incorrectly discouraging
diagnosis; the prognosis is not nearly so rosy as "they" (the
nefarious academic experts) claim; many lives have been ruined; and
many people have
   died (8-10). None of these claims is supported by scientific
medical literature, yet they   disseminate regularly, acquiring
verity by their repetition.

By focusing on terminology, we may understand how some confusion has been
promulgated and exacerbated. Insight may aid in clarification and be
useful in addressing  non-Lyme disease areas of contention. The
contents of Table 1 are probably acceptable to most researchers and
clinicians who think about Lyme disease. Beyond these   "absolute"
facts lie concepts involving terms such as "very unlikely," "has
been reported," "usually," or "in most patients"modifiers describing
"shades of gray."  Physician-scientists are good at communicating
facts, but "shades of gray" are often difficult to convey; the more
precise one tries to be about the limits of our knowledge, the  more
doubts are planted, and the more misinterpretations occur. This is
the root of endless debate, the home of a Cartesian dualism of sorts.

Rationalists versus Empiricists

The opposing sides in this debate about the true nature of Lyme disease can
described as "rationalists" and "empiricists." Rationalists use
scientific studies, both clinical and molecular, to develop models
of disease and appropriate diagnostic and therapeutic responses.
Empiricists base models on community events, developing diagnostic
and management schemas that are compatible with observations, but
often at odds with scientific conclusions. In conveying their
message, empiricists often adopt terminology that contradicts the
terminology's intended meaning. Most published clinical and basic
research on Lyme disease is from rationalists, physicians searching
for   objective evidence of infection. The empiricists' ranks
include support groups and
physicians in practices devoted to the care of patients with

>"chronic Lyme disease," who are given a diagnosis and are treated on

the basis of nonspecific symptoms, such as fatigue, cognitive
dysfunction, and pain, rather than objective evidence of infection.
Empiricists "listen to the patient" rather than follow the advice of
>scientific studies, as if  these were mutually exclusive.

Rationalists fear that physicians, with the help of  misinterpreted
test results, occasionally misdiagnose serious illnesses as "chronic
  disease." Empiricists often diagnose without formulating a
differential diagnosisthis is  Lyme disease. Some call these two
opposing views "two schools of thought," but I  prefer to call them
proponents of "reality" and "alternative reality." The sage of
Baltimore, H.L. Mencken, could have been referring to this divide
when he penned his introduction to the first American edition of The
Antichrist by Nietzsche: "The majority of men prefer  delusion to
truth. It is easier to grasp. Above all, it fits more snugly into a
universe of false appearances ... ."

"Delusions" may satisfy needs; facts offer cold comfort to the
sufferer. When false  appearances assume the cloak of "reality,"
"alternative reality" is established.

The debate between these two groups includes diagnosing the illness,
use of testing in diagnosis and management, duration and forms of
therapy, prognosis, and defining a  cure. Inattention to details and
facts, their manipulation, and incorrect citation have fed this
occasionally rancorous disputation (12), further confusing most
clinicians and  patients on the sidelines and causing the suffering
of innocent patients and families.

Lyme Disease as "The Great Imitator"

The term "The Great Imitator" as applied to Lyme disease (an attempt
to form an analogy with another spirochetal disease, syphilis [19])
contributed to confusion. The comparison was meant not to denote
clinical similarities between these diseases but to suggest that, as
with syphilis in a previous era, Lyme disease included a broad range
of findings and  mimicked other diseases. However, it soon became
clear that most cases of Lyme  disease are recognizable in a
well-described spectrum (20-25), the rare exceptions  being, by
definition, outliers (26). Most patients have objective
abnormalities (2). Used correctly, testing is helpful: Immunologic
(antibodies in serum and cerebrospinal and
synovial fluids) (27), molecular biological (polymerase chain
reaction identification of  specific DNA), electrophysiologic (heart
and neurologic), and neuropsychological (28)  tests can support the
diagnosis (8). Instead, "The Great Imitator" was misinterpreted as
suggesting that Lyme disease routinely mimics and is mimicked by
many other diseases.  Some empiricists believed Lyme disease was
difficult to explicitly diagnose and had to be part of the
differential diagnosis of all problems of all diseases it might
imitate (11).

Lyme disease is often considered in many patients whose symptoms do
not explicitly  suggest Lyme disease and who receive that diagnosis
merely because no other  diseases can be explicitly diagnosed.

Centers for Disease Control and Prevention  Criteria: Use and Misuse

The belief that Lyme disease is often overlooked is expressed as
dissatisfaction with  (even anger at) the Centers for Disease
Control and Prevention (CDC) surveillance  criteria as dangerous
stricture, inexplicably designed to minimize reports of "accepted"
cases (29). The criteria were designed for surveillance (and are
useful as entry criteria  for studies) but were not meant for

read more »

Thu, 26 Aug 2004 03:52:28 GMT
 Sigal: "Misconceptions about LD" '02
Dear Rita,

Thank you for posting the latest Sigal misconceptions.

Martha A.

Thu, 26 Aug 2004 05:14:03 GMT
 Sigal: "Misconceptions about LD" '02
For those of you who may be new to the Sci-Med Lyme forum, it may be
of interest to you that the insurance companies pay people like Sigal
to support the idea that Lyme disease is hard to catch, is easily
treated and does not persist as a chronic infection. He frequently
testifies for insurance companies against patients. This is just more
of his politically motivated pseudo-scientific propaganda.

Thu, 26 Aug 2004 11:11:55 GMT
 Sigal: "Misconceptions about LD" '02
Yeah, but this is the"junk "that dominates head and shoulders and then some.
The same old calling it {*filter*}for the last ump{*filter*} years has done nothing at
all but make people feel somehow superior while patients and docs get eaten
for breakfast, lunch and, now, dinner.

The ACP stuff came out a long time ago, and was pretty much entirely ignored
by the LD community - other than calling it names; head-in-the sand behavior
that only made it stick hard and fast and grow.

Ignore this at your peril. Laugh at it,{*filter*}at it, whatever. It rules and
things are only getting worse. This is part of the power sturcture, and not
liking it or saying it is lousy, doesn't change anything.

BTW where is "our" literature; "our" guidelines "our" rebutals- on the net?
I'm in ILADS - I don't see jack from the inside either.


Please remove "NOSPAM" from address to reply.


>And the rag that published Sigal's junk is the Annals of Internal
>gem of the American College of Physicians (ACP).

>The ACP helped sponsor an ALDF closed-door, invitation-only LD conference
in NY
>(in the 90s, I think).  At the end of the conference, Annals published the
>"findings" or latest guidelines to Lyme Disease, based upon ALDF's


>The same players, the same LD nonsense and disinformation, the same
>"literary?" vehicle;  just a different time.

>Been there, done that.

>Still waiting for something credible to come out of ACP's opus.


Fri, 27 Aug 2004 10:20:38 GMT
 [ 4 post ] 

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