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Kaiser Permanente Lyme Disease Information
– A Critique
The Kaiser Healthwise Handbook and its Internet equivalent are sources
of incomplete, incorrect and misleading information for Lyme disease.[1] Selected
issues are discussed below.
Kaiser states;
“On the Pacific Coast, the western
black-legged tick can carry the disease,
but only 1% are infected. The percent of infected ticks is slightly
higher
(3-6%) in California’s northern coastal counties of Sonoma,
Humboldt, Lake,
and Mendocino. In fact the risk of getting Lyme disease is very low in
California.”
The facts;
Certain areas of California are highly endemic for
Lyme and other tick-borne
diseases. The vector tick is found in 55 of California's 58 counties.
In
Mendocino County, two hours north of San Francisco, the average tick
infection
rate is 15 percent (range 4 percent to 41 percent), and the outdoor
lifestyle
brings frequent exposure to ticks. [2]
These tick infection
rates are on par with the worst areas of the Northeastern United States
where Lyme disease is epidemic. Bites by multiple ticks can increase
the
probability of infection.
A research study in the Ukiah area found 24
percent of the residents
had positive Lyme tests and 37 percent had definite or probable Lyme
disease.[3]
Another research study using tick-saliva antibodies suggests that more
than one-third of San Francisco Bay Area residents have been bitten by
Ixodes pacificus, the tick that is known to carry Lyme disease. [3]
These facts contradict the statement that “the risk of
getting Lyme disease
is very low in California.”
The Centers for Disease Control (CDC) classifies
the West Coast, particularly
northern California, and the Northeast and North-central states as the
areas with the highest incidence of Lyme disease in the United States. [4]
Other tick-borne infections endemic to California
and the Pacific Northwest
are Babesia, Ehrlichia, Bartonella, and Tularemia. These can either
present
as coinfections of Lyme disease or as a sole infection. In some areas
where
studies have been done, coinfections have been shown to be more
prevalent
than infections with Lyme disease alone. Lyme disease is the fastest growing reportable
infectious disease in
the United States based on an analysis of CDC reported cases that are
based
on a passive, not mandatory, reporting system. The CDC has acknowledged
that reported statistics greatly understate the true incidence of the
disease. [5] The
actual number of new cases probably exceeds ten times reported cases,
or
about 200,000 new cases per year. [6]
Kaiser states;
“The first sign of Lyme disease is
usually a spreading red rash around
the tick bite that looks similar to a
“bull’s-eye” and begins four days
to three weeks after the bite.”
The facts;
The erythema migrans, or
“bull’s-eye” rash, only occurs in about
50%
of those infected. It is not always the first sign of Lyme disease. It
is a sign of the dissemination of the disease. Flu-like symptoms after
exposure are usually the first sign of infection.[7]
Kaiser states;
“The next most common sign of Lyme
disease is joint swelling and pain,
or loss of movement on one side of the face. This usually occurs a few
weeks or months after the bite.”
The facts;
This is a very narrow and restrictive definition
of Lyme disease and
the symptoms cited are not at all common. Bell’s palsy or
loss of movement
on a side of the face, only occurs in 5% to 10% of those infected.[7]
Bell’s palsy can affect both sides of the face.
Bell’s palsy is not considered
a symptom of early-stage Lyme disease.[8]
It is a neurological
symptom and evidence of cranial nerve involvement. Joint swelling can
be
intermittent or may not occur at all.[9]
Using these two
symptoms only as clinical criteria will miss the vast majority of Lyme
disease cases.
Chronic fatigue and lethargy are the most common
manifestations of Lyme
disease.
Lyme disease is a serious bacterial infection that
has been known to
affect nearly every organ system in the body and can have devastating
consequences.
It is also known as Lyme borreliosis. According to the Centers for
Disease
Control, “…disseminated infection may be manifest
as disease of the nervous
system, the musculoskeletal system, or the heart.
Early neurologic
manifestations
include lymphocytic meningitis, cranial neuropathy (especially facial
nerve
palsy), and radiculoneuritis. Musculoskeletal manifestations may
include
migratory joint and muscle pains with or without objective signs of
joint
swelling. Cardiac manifestations…may include myocarditis and
transient
atrioventricular blocks of varying degree. B. burgdorferi infection in
the untreated or inadequately treated patient may progress to late
disseminated
disease weeks to months after infection.”[9]
The CDC description and more comprehensive
information supported by
a plethora of peer-reviewed research are at odds with
Kaiser’s limited
definition of this disease.
Kaiser states;
“After exposure to tick areas, search
clothing for ticks, then wash
clothes. Perform a body check for ticks after exposure and on the
following
day.”
The facts;
Nymphal ticks are the primary source of infection.
They are very small
and rarely noticed even with body inspection. The majority of those
infected
with Lyme disease did not notice the tick.
Kaiser states;
“Throw away the tick.”
The facts;
Do not throw away the tick if you are able to
retrieve it. The tick
should be stored in a glass jar. It can be an important diagnostic
tool.
Public health departments can test ticks for Lyme disease. Private
laboratories
offer highly specific PCR (DNA) testing for Lyme disease and
coinfections.
Testing the tick by PCR may avoid diagnostic problems in later stages
of
tick-borne infections and can be done months to perhaps years after
retrieval.
Kaiser states;
“Blood tests should not be done after a
tick bite, because infection
is rare and cannot be detected in your blood for several
weeks.”
The facts;
The immune reaction to Lyme disease takes some
weeks to develop. However,
research has shown that about one-third of proven Lyme cases are
seronegative
by most blood tests.[14]
The test that Kaiser will offer,
the ELISA, will only detect about half of proven Lyme cases at best
(four
weeks after the bite). In one Kaiser study, 117 blood samples of
physician
and patient suspected Lyme disease were analyzed by ELISA.[10] Only
one came back positive. Kaiser has used this study to support their
contention
that Lyme disease is rare in California. It is more likely an example
of
flawed testing procedures, improper specimen handling, possible sample
degradation during cross-country shipping, possible improper strain
comparison,
and the inappropriate use of this test for cases beyond early-stage
Lyme
disease.[11]
The ELISA is used as a screening test for
new infection and is of limited value for the diagnosis of late-stage
Lyme
disease.[12]
The ELISA is a first-tier test required by the
Centers for Disease Control
for surveillance reporting purposes which has criteria so strict that
very
few, even with proven Lyme disease, are able to meet the criteria. The
case definition was structured so that there would be little doubt that
cases that meet the criteria have Lyme disease. It is used to identify
new cases of Lyme disease so that the CDC can determine trends in the
geographical
spread and frequency of the disease. Kaiser’s diagnostic
protocols inappropriately
conform to CDC surveillance criteria. The CDC specifically directs
health
care practitioners that surveillance criteria are not to be used for
diagnosis. [14]
The official statistics compiled by the CDC and
California, Oregon and
Washington are not a measure of the true incidence of Lyme disease in
these
states. The State of California Lyme Disease Advisory Committee
specifically
discourages the use of the word “rare” to describe
Lyme disease in California
since the true incidence is not known.[3]
In addition, Lyme disease can be misdiagnosed as
fibromyalgia, chronic
fatigue syndrome (CFS), multiple sclerosis (MS), Lou Gehrig’s
disease (ALS),
lupus, Parkinson’s disease, Alzheimer’s disease,
cardiac problems and a
number of other conditions. Lyme disease is rarely considered for these
diagnoses but some of these conditions are certainly not rare.
Kaiser states;
“Blood tests are helpful in diagnosing
Lyme disease when signs of the
disease are found by a physical exam.”
The Facts;
The ELISA test that Kaiser orders only detects
recent infection that
may or may not be due to Lyme disease. The ELISA has been shown to be
an
unreliable test in many patients with Lyme disease, both in early
infection
and later disease.[12] The
Western Blot tests are specific
to Lyme disease but are not ordered by Kaiser unless the patient has a
positive ELISA. Over 75% of patients with chronic Lyme disease are
negative
by ELISA, while positive with Western Blot.[12] A Western
Blot done by a reliable reference laboratory showing detailed antibody
responses can be used for diagnosis of late-stage Lyme disease. Western
Blot results are reported as “positive” or
“negative” depending on whether
or
not strict CDC criteria were met. An experienced physician can
determine
the presence of the disease using detailed Western Blot results
although
the test summary may be reported as CDC
“negative.”
The National Institute of Allergy and Infectious
Diseases, part of the
National Institutes of Health, states that “the most
appropriate serologic
test for prior infection with Borrelia burgdorferi, the spirochete that
causes Lyme disease, is the IgG western blot assay.”[13]
Kaiser fails to provide any caution to patients
with regard to coinfections.
Tests for coinfections should be done in conjunction with Lyme disease.
Coinfections can require different treatments than those for Lyme
disease.
Some coinfections can be fatal.
A physical exam is only part of a clinical workup
in the diagnosis of
Lyme disease, particularly since symptoms can be intermittent. Many
symptoms
cannot be determined by a physical exam. An example would be impaired
mental
function, which requires specialized high-quality SPECT imaging for
physical
proof of impairment. The CDC maintains that Lyme disease requires a
clinical
diagnosis. This would include possible place of exposure, a history of
symptoms known to be consistent with Lyme disease, differential
diagnosis
to rule out other causes for the symptoms, and blood tests specific to
Lyme disease, to name some of the factors which should be considered in
addition to a physical examination. [4]
Kaiser states;
“Lyme disease can be cured if diagnosed
early and treated with the correct
antibiotic. However, antibiotics should not be given just for tick
bites,
unless there is proof of infection.”
The facts;
Kaiser is known by Lyme disease support group
leaders in Kaiser service
areas to provide only minimum treatment for early-stage Lyme disease,
if
it is diagnosed at all. Undertreatment, prescribing low doses of
antibiotics
for short periods of time, has been known to result in very difficult
and
treatment-resistant cases of Lyme disease.[12]
Prophylactic antibiotics are recognized as an
acceptable form of treatment
although their effectiveness in low doses and short duration remains
controversial.[15]
If left untreated or undertreated, late Lyme disease can occur weeks,
months, or years after infection.[2]
There is no mention
of late-stage Lyme disease in Kaiser’s member information.
Late-stage disease
can be highly debilitating or incapacitating, can have serious
consequences
and can require prolonged medication. In fact, given the current state
of medical knowledge of Lyme disease, it may not be possible to
eradicate
the Lyme bacterium once the disease progresses to later stages. But it
can certainly be treated and quality of life can be resumed.
| References;
1 Kaiser
Permanente, Prevention & Self-Care, Lyme
Disease & Tick Bites
http://www.kaisersantaclara.org/downloads/lymedisease.pdf (Note that Kaiser has removed this from the web)
2 An Update on
the Epidemiology of Lyme Disease in California,
Medical Board of California, October 2001
http://www.dhs.cahwnet.gov/ps/dcdc/disb/pdf/dhs_lyme_medbd_news_10_2001.pdf
3 Lyme Disease
Advisory Committee Minutes of the April
27, 2001 Meeting, California Department of Health Services
http://www.dhs.cahwnet.gov/ps/dcdc/disb/pdf/LDAC%20Minutes%2027%20Apr%202001.pdf
4 CDC Guide To
Lyme Disease
http://www.nddh.org/CDC%20Guide%20to%20Lyme%20Disease.htm
5 Centers for
Disease Control, Lyme Disease, Epidemiology
http://www.cdc.gov/ncidod/dvbid/lyme/epi.htm to
6 Surveillance
for Lyme Disease – United States, 1992-1998,
Centers for Disease Control
http://www.cdc.gov/epo/mmwr/preview/mmwrhtml/ss4903a1.htm
7 University of
California at Davis, “What are the symptoms
of Lyme disease?”
http://www.ucdmc.ucdavis.edu/ucdhs/health/a-z/16lymedisease/doc16symptom.html
8 Steere AC, et
al, Clinical Manifestations of Lyme
Disease, 1986, National Library of Medicine
9 Centers for
Disease Control, Lyme Disease, Diagnosis
http://www.cdc.gov/ncidod/dvbid/lyme/diagnosis.htm
10 "The Use of
Serologic Tests for Lyme Disease in
a Prepaid Health Plan in California," Catherine Lay, MS et al (JAMA
2/9/94-Vol.
271, No. 6)
http://jama.ama-assn.org/cgi/content/abstract/271/6/460
and http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8080498&dopt=Abstract
11 Baker, CJ, IDSA
Public Statements and Positions,
Letter to JCAHO on Microbiology Laboratories, March 1, 2001, Infectious
Diseases Society of America
http://www.idsociety.org/PA/PS&P/JCAHO_3-1-01.htm
http://lyme.kaiserpapers.info/idsa.html
12Donta, Sam,
Late and Chronic Lyme Disease, May 15,
2002, Boston University School of Medicine
http://www.immunesupport.com/library/showarticle.cfm/ID/3579
13 Profile,
Fiscal Year 2001, NAIAD, pages 68-69.
http://www.niaid.nih.gov/publications/NIAIDProfile/pdf/profile2001.pdf
14 Excerpts
from Public Law 107-116 Signed by President
Bush 1/10/02
“While the CDC does state that 'this surveillance case
definition was
developed for national reporting of Lyme disease: it is NOT appropriate
for clinical diagnosis,' the definition is reportedly misused as a
standard
of care...”
http://lyme.kaiserpapers.org/presbush.html
15 Nadelman, et al,
Prophylaxis with Single-Dose Doxycycline
for the Prevention of Lyme Disease, New England Journal of Medicine,
July
12, 2001
http://content.nejm.org/cgi/content/abstract/345/2/79 |
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