20 Reasons Why Lyme Disease Is
Geographic Distribution of Ticks in the United States - CDC Maps
This paper was written to outline some of the problems associated with
the diagnosis of Lyme disease. It turned out much longer
than expected. The paper has been broken up into brief sections. A two
page summary is available. Link to two page summary
In 1993, Allen Steere MD, a rheumatologist,
Overdiagnosis of Lyme Disease.” His conclusions were based on a
sampling of the serum of patients run through his laboratory. Most of
patients’ serum samples were negative in his laboratory while positive
in other laboratories. An obvious defect in this study is that Steere
comparing an unreliable test done in his laboratory with the same
unreliable test done in outside laboratories. Therefore, the entire
basis for this
study is flawed. Also, for this study, Steere discarded Lyme disease
victims who did not meet his biased and exclusionary definition of Lyme
Steere’s study was promptly and expertly criticized shortly following
Nevertheless, Steere’s paper has had an oppressive effect on the
diagnosis of Lyme disease which, in turn, has caused much harm to Lyme
disease victims and is, at least, partially responsible for destroying
countless lives and causing unnecessary deaths.
Steere continues to propagate misleading and inaccurate information
claiming that Lyme disease tests are accurate. Scientific studies have
proven his views to be wrong.
Below are some of the reasons Lyme disease is, in reality, vastly
presentation of Lyme
of low “reported” cases
tick and tick
borne disease studies
of America (IDSA)
to HMO’s and
and licensure threats
public and medical ignorance
real estate prices
A summary follows:
Doctors who are not knowledgeable about Lyme disease follow the Lyme
disease guidelines issued by the Infectious Diseases Society of America
(IDSA). The guidelines promote the use of the ELISA test as
a first-step screening test and claim the test is highly accurate. This
is to be followed by Western Blot tests only if the ELISA is
positive. In fact, a study by Johns Hopkins released in 2005 showed
that this approach only picks up 25% of proven Lyme cases. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1248466/)
The Johns Hopkins tests were done at specialty laboratories. Serologic
tests performed at mass volume laboratories used by HMO’s will likely
result in even lower sensitivity. Also, most tests are designed
around East Coast strains. Tests for West Coast strains and strains in
other areas are even less likely to be positive using standard
Many, many peer-reviewed studies have shown the very poor results to be
expected from the Lyme disease ELISA tests. Yet Steere and the IDSA
continue to mislead insisting it is extremely accurate.
The Centers for Disease Control (CDC) modified their serologic criteria
to accommodate financial interests in the failed Lyme vaccine making
the test even less reliable and even more likely to underdiagnose. http://jcm.asm.org/cgi/reprint/34/6/1353.pdf?ck=nck
(“…the exclusion of the 31-kDa and 34-kDa protein bands from the
diagnostic criteria may result in the underdiagnosis of Lyme disease by
those who would rely too heavily on serological confirmation.”) The
31-kDa and 34-kDa are highly specific to Lyme disease.
Another source of diagnostic confusion is that the myth that the “Lyme
Rash” (erythema migrans) has a distinctive “bull’s-eye” shape and
occurs in a very high percentage of those infected, in the order of
truth is that the Lyme rash can have a variety of presentations and
occurs in fewer than 50% of those infected. Some believe the classic
“bull’s-eye” only occurs in 10% of those infected. http://canlyme.com/lyme-basics/symptoms/
The unsatisfactory state of
disease testing prompted a U.S Senate directive in Public Law 107-116
signed in 2002.
“The Committee recognizes that the current state
laboratory testing for Lyme disease is very poor. The situation has led
many people to be misdiagnosed and delayed proper treatment.”
“The Committee is distressed in hearing of the
misuse of the current Lyme disease surveillance case definition. 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 for healthcare reimbursement, product (test)
development, medical licensing hearings, and other legal cases. The CDC
is encouraged to aggressively pursue and correct the misuse of this
For an excellent presentation on Lyme disease
presentation of Lyme
Lyme disease can have a variety of presentations that can confuse
doctors. The result is that Lyme disease is commonly misdiagnosed as
fibromyalgia, MS, Parkinson’s, chronic fatigue syndrome, Lou Gehrig’s,
arthritis, cardiac problems, Alzheimer’s, ADD, and other conditions.
When doctors are baffled, they may diagnose Lyme disease complaints as
a psychiatric disorder and place the blame for their incompetence on
Since Lyme disease can have multiple presentations, the CDC designed
the two-tier serologic testing procedure described above. The purpose
was to make the criteria so stringent that only those with “certain”
Lyme disease would be counted. Very few with proven Lyme disease,
perhaps in the order of 10%, can meet these criteria.
Doctors with little or no knowledge of Lyme disease mistake the
surveillance criteria to mean diagnostic criteria. These figures are
then used to issue statistics on “reported” cases. The focus for the
is on arthritic rather than the more serious neurologic and cardiac
manifestations. For reasons listed below, many doctors do not report
Lyme disease diagnoses even for cases meeting strict surveillance
Laboratories are required to report test results as “positive” or
“negative” depending on whether or not they meet the CDC surveillance
criteria. Uninformed doctors incorrectly interpret this to mean the
patient has Lyme disease or does not have Lyme disease.
implications of low
Regional doctors who are not well informed interpret reported Lyme
cases as being indicative of the prevalence of Lyme disease in their
region. The very low number of reported cases in most regions misleads
into believing that Lyme disease is rare or nonexistent in their area.
As a result, Lyme disease is not even considered as a possible
diagnosis and the patient is either diagnosed with another condition or
Compounding this problem is the disclaimer by some state health
agencies that the infection may have been acquired elsewhere. As a
result, regional doctors are even less likely to consider Lyme as a
in a given area. Most people do not notice the tick and do not get a
rash making it virtually impossible to know where one was infected.
Washington State disclaimer;
Stored at: http://lyme.kaiserpapers.org/pdfs/lyme.pdf
“DOH (Department of Health) has received 7 to 18 reports of Lyme
disease per year in recent years. Almost all Washington cases are the
result of tick exposure out of state. Endemic Lyme disease is not
common.” Proof for this disclaimer is lacking.
In the case of Washington State, for example, the Lyme disease
information provided by the DOH is obsolete and incorrect. Doctors who
heed this information are unlikely to diagnose Lyme disease. Most state
health agencies are misinformed about Lyme disease.
Medical professionals and health agencies are largely unaware that the
CDC has stated actual Lyme disease cases can be as high as 12
times reported cases. This observation may apply to areas where Lyme
is endemic and recognized. In areas where Lyme disease is endemic but
unrecognized, the reported figures and multiplier are meaningless.
tick and tick
borne disease studies;
Reliable tick distribution and tick disease studies are sorely lacking
outside of well recognized endemic areas such as the Northeast, the
Midwest, and California. For the most part, such studies are either
decades old, or poorly executed in parts of the country where Lyme
disease is not acknowledged to be endemic.
Future studies should be designed to accommodate strain variations from
region to region to achieve accurate results. New strains continue to
Such studies are critical in determining the risk of Lyme disease and
other tick borne infections in a given area and would conclusively
prove the existence of Lyme disease, which has now been reported in
It would also provide valuable information for doctors in order to give
appropriate consideration for a diagnosis of Lyme disease.
Tick densities and infection rates can vary greatly within a short
distance. Absence of infection in Ixodes ticks should not be taken to
mean there is no Lyme disease in an area. However, positive findings
are proof of
infection in a given area. The presence of Ixodes ticks in a given area
is the best indicator of the risk of contracting Lyme disease and
eliminates the risk of poorly executed studies for tick infection rates.
of America (IDSA);
The IDSA is the entity most responsible for creating the current
unhealthy medical environment associated with Lyme disease.
The IDSA Lyme disease guidelines, the subject of an antitrust
investigation by the Connecticut Attorney General
been an overwhelming detriment to the proper diagnosis (and treatment)
of Lyme disease. (http://www.journals.uchicago.edu/doi/abs/10.1086/508667)
The authors were found to have gross conflicts of interest which were
not disclosed. These included financial interests in test kits and
vaccines, ownership interests in private companies that are present or
beneficiaries of Lyme disease products and services, income from HMO’s
and insurers, ties to companies that benefit from the guidelines,
pharmaceutical companies and laboratories, and patent interests in the
Lyme organisms themselves. Their unfounded and unscientific claim that
chronic Lyme disease does not exist is a windfall for HMO’s and
insurers to justify refusal to pay for appropriate, and possibly
long-term treatment. Symptomatic treatment of Lyme disease is a gold
mine for pharmaceutical companies who create and sell drugs to mask and
alleviate the symptoms.
The authors are given undeserved credibility because of the
institutions that employ them, presumably for their ability to generate
NIH research grants through what appears to be a rigged process. These
include Yale, Harvard, New York Medical College, New York University,
Johns Hopkins, University of Connecticut, and others.
Trivialization of Lyme disease, with certain authors claiming it is
“hard to catch and easy to cure” has detracted from the seriousness of
this disease and the attention it deserves. Unwitting physicians who
accept this do
not realize that Lyme disease is serious, can be life threatening, and
may be incurable, particularly if not diagnosed at an early stage.
Although the IDSA Lyme disease guideline authors claim that their study
is based on “science,” the fact is that over 50% of their references
were simply their own previous opinions. The selective “independent”
references provided were supportive of their views. Over 95% of
available Lyme disease articles and studies in the National Libraries
of Medicine were
ignored. Under the guise of labeling Lyme disease a medical
“controversy,” a stance which has been disproven with numerous
scientific studies, the
IDSA continues to propagate their views to a gullible public and
Endorsement of these guidelines by the CDC has provided undeserved
clout. Some of the authors were previously CDC employees and appear to
have a significant influence on the CDC. In addition, CDC employees
have their own conflicts of interest relating to Lyme disease. The IDSA
Lyme disease guidelines also encourage the use of the CDC
surveillance criteria as diagnostic criteria. As previously noted, very
few with proven Lyme disease can meet the CDC surveillance criteria for
The CDC’s Paul Mead is on the “faculty” to teach an IDSA Lyme disease
course alongside some of the IDSA Lyme guideline authors investigated
by the Connecticut Attorney General. http://lymecourse.idsociety.org/
So it appears the CDC is clearly aligned with the biased and corrupted
This is incomprehensible.
Many believe the IDSA may well be concerned about the great harm the
Lyme guidelines have caused and its liability aspects. The numerous
lawsuits and medical complaints filed against the Lyme disease
guideline authors have not been disclosed.
Even the Lyme guidelines review forced by the Connecticut Attorney
General appears to be ongoing evidence of IDSA corruption. The outcome
was simply a “rubber stamp” of the flawed guidelines and the review
procedure itself appears to have violated the terms of the settlement.
The entity most responsible for allowing this unfortunate state of
affairs in Lyme disease to happen and continue is the CDC.
For many decades, the CDC has been viewed as a reliable source of
health information. Some medical professionals in different specialties
are starting to realize this reputation may no longer be warranted. The
media is just starting to grasp this.
The CDC now
appears to be in the vaccine business and creating imaginary pandemics.
Certain CDC employees have patent interests in Lyme disease testing and
The conflicts of interest made possible by the Bayh-Dole Act, enabling
patent interests by government employees, and the revolving door
between the CDC and pharmaceutical companies has compromised the CDC’s
previously deserved fine reputation. The latest example is the hiring
of former CDC director, Dr. Julie Gerberding, by Merck.
The virtual control of the press and the dissemination of CDC
information by mass media is the main reason why the CDC/IDSA
misinformation on Lyme disease is so widely accepted and believed.
The CDC is clearly allied with IDSA and Lyme disease information
apparently controlled by IDSA. As previously mentioned, Paul Mead, a
medical epidemiologist with the CDC, is on the faculty of IDSA to teach
an online course about Lyme disease;
The CDC endorses only the IDSA Lyme guidelines on its web page; http://www.cdc.gov/ncidod/dvbid/Lyme/ld_humandisease_treatment.htm
The CDC has adopted a very limited, biased, and misleading definition
of Lyme disease;
For example, the statement that the erythema migrans occurs in 60% -
80% of patients is not true. To cite another example, cardiovascular
symptoms are limited to atrioventricular conduction defects. The more
“palpitations, bradycardia, bundle branch block, or myocarditis alone
are not criteria for cardiovascular involvement” according to the CDC.
threatening tachycardias are not even mentioned. In fact, the CDC
states that Lyme disease is not fatal. This is false.
The CDC makes no obvious effort to correct the understated reported
cases information to insure they are not misinterpreted as being the
true number of Lyme disease cases;
The CDC’s web page no longer has much useful content. Previous web
pages by the CDC used to have useful content but are now very difficult
to access, even on archival web sites; http://www.cdc.gov/ncidod/dvbid/Lyme/
Not a single patient friendly resource is listed on the CDC site; http://www.cdc.gov/ncidod/dvbid/Lyme/ld_resources.htm
The information provided is deeply flawed and most originates from the
same sources that authored the IDSA Lyme disease guidelines. For
Stored at: http://lyme.kaiserpapers.org/pdfs/tickborne_diseases_physician_manual.pdf
The CDC promotes two-tier testing for diagnosis and claims the ELISA is
highly accurate which has been disproved in medical studies. http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm
The fact that the CDC and an employee hold a patent interest in ELISA
is not disclosed;
The CDC attempted to eliminate Lyme disease guidelines that differed
(i.e. The International Lyme and Associated Diseases Society http://www.ilads.org/
“Dr. Stamm (President of IDSA at the
commented that rogue
guidelines are legitimizing long-term treatment for chronic Lyme
disease; as long as these guidelines can be accessed, this type of
treatment can be legitimized.”This meeting was the genesis of the 2006
IDSA Lyme disease guidelines.
to HMO’s and
Early or acute Lyme disease can normally be cured with a relatively
short treatment using inexpensive antibiotics. However, the protocols
in the IDSA Lyme disease guidelines virtually insure that the disease
will not be
caught at an early stage. This is due to inherent delays with testing
and diagnostic procedures and the poor accuracy of the IDSA/CDC
recommended ELISA screening test.
Late-stage Lyme disease cases can be expensive to diagnose and can be
difficult or impossible to cure requiring long-term and potentially
expensive treatment. Accurate testing for Lyme disease and coinfections
specialty laboratories can be costly. Very few physicians have the
knowledge and skill to diagnose complex cases of Lyme disease.
It is well known that the number of Lyme disease cases far exceeds the
number of AIDS cases. HMO’s and insurers lost significant amounts of
money on AIDS patients and do not want to re-experience this many fold
Lyme disease cases. An excellent analysis of the true numbers of Lyme
disease cases can be found at;
Several strategies have been developed to avoid this potential expense
problem for HMO’s and health insurers. One is to enforce the use of the
IDSA Lyme guidelines to limit diagnosis and treatment. For example,
falsely claims there is no such thing as “chronic Lyme disease” that
may require extended treatment. A second strategy is to deny that Lyme
disease is a
problem in certain market areas so a Lyme disease diagnosis will not be
considered. Other strategies are also used. Kaiser Permanente has been
known to ship blood samples for Lyme disease across the country with
two or more weeks transpiring between blood draw and analysis. Even
has condemned this practice because of the risk of sample degradation
which virtually insures a negative result.
It is noteworthy that the CDC deleted a previous reference stating that
out of 117 Kaiser Permanente blood samples from a Lyme endemic area of
California, only one was positive. http://www.harp.org/eng/kaiserslymesummary.htm
Kaiser Permanente, incidentally, has used Steere’s laboratory for Lyme
The flip side of this is that Lyme cases misdiagnosed as MS, ALS, or
Parkinson’s or other conditions can be very expensive to treat. So it
is difficult to justify the logic of HMO’s and insurers. One rationale
might be that
some of these diseases are fatal within a certain timeframe so costs
can be identified and end upon death of the patient.
and licensure threats;
“Not long ago, most doctors ordered tests, prescribed drugs, admitted
patients to hospitals or referred them to specialists, and performed
procedures based on their own experience and professional judgment. No
doctors who want to be on the “approved” list must agree to practice
medicine based on a health plan’s guidelines. For most doctors, the
guidelines mean fewer tests, fewer referrals, and fewer hospital
Many of the IDSA Lyme guideline authors and their associates have
testified against physicians who treat outside of IDSA guidelines.
Doctors who diagnose Lyme disease frequently and who do not conform to
the IDSA guidelines have been reported to medical boards by HMO’s and
insurers. The first instance of medical board harassment because of
Lyme disease occurred in 1993. This case was reported by Kaiser
Permanente NW in Oregon.
Since then, there have been more than 40 cases of harassment of
legitimate Lyme disease clinicians by medical boards. Some states have
adopted legislation to protect physicians who diagnose Lyme disease and
not conform to the short-term treatment protocols dictated by IDSA.
Mentioned before was one exceptional instance of IDSA Lyme guideline
enforcement that took place at a closed meeting between the NCID/CDC
and the President of IDSA at the time, Walter Stamm.
A concerted effort to eliminate competing Lyme disease guidelines was
The threat of medical board investigation has greatly limited the
number of doctors willing to diagnose and treat Lyme disease
public and medical ignorance;
The mainstream media have been instrumental in promoting the IDSA Lyme
disease guidelines. Reporters associated with large media sites parrot
the IDSA guidelines and do no research. Part of this is due to the
influence and now undeserved credibility of the CDC and their support
of the IDSA Lyme disease guidelines. The IDSA/CDC/NIH are experienced
structured to promote their medical opinions in the medical and public
press. Another factor involved in spreading misinformation about Lyme
may be the influence of HMO’s, health insurers, and possibly
pharmaceutical companies since they are significant contributors to the
advertising income of major media outlets.
The number of articles in major media newspapers is extremely low
compared to other diseases that have a much lower prevalence than Lyme
disease. A Google news archives search showed 36,400
disease” since 1980. In comparison, a search for “Parkinson’s disease”
(since 1950) resulted in 92,200 citations, “West Nile virus” (since
1999) returned 97,000 citations, “AIDS virus” (since 1983) had 337,000
results, and “H1N1” (since 2008) showed 565,000 results. The peak
number of Lyme
disease articles occurred in 1987 and has been declining since.
The disease, on the other hand, has been steadily increasing.
The alternative guidelines issued by the International Lyme and
Associated Diseases Society (ILADS), which are written for the benefit
of patients’ health, are rarely mentioned in the mainstream
The market for symptomatic treatment of Lyme disease through
pharmaceuticals is undoubtedly immense. The pharmaceutical market for
arthritis alone generated $15.9 billion in revenues in 2008. http://www.wikinvest.com/wiki/Arthritis_Drug_Market
Worldwide sales of Parkinson's disease therapies will increase modestly
from $2.5 billion in 2008 to $2.8 billion in 2018 in the United States,
France, Germany, Italy, Spain, the United Kingdom and Japan.
According to PharmaLive, pharmaceutical industry experts expect the
fibromyalgia drug market to quadruple to $2 billion by 2016. Leonard
Sigal, a rheumatologist and contributor to the IDSA Lyme guidelines, is
heavily involved with promoting fibromyalgia as an alternative
diagnosis. Sigal, a former academician, now works for a pharmaceutical
company. He has
also testified in legal cases, on behalf of insurers, against Lyme
disease doctors and victims. http://underourskin.com/blog/?p=137
The denial of chronic Lyme disease by IDSA is an important factor in
pharmaceutical marketing. According to the IDSA Lyme guideline authors,
regardless of how long one has had the infection, how entrenched it is
in immune protected sites, or how disabling it is, a short course of
antibiotics will eradicate the disease from the body. This has never
Numerous scientific studies have shown IDSA’s claims to be false.
Irregardless, according to IDSA, after a few weeks of antibiotic
treatment a person is “cured” of Lyme disease. Then, suddenly, ongoing
symptoms are due to some other unidentified problem which can be
ongoing drug treatment. IDSA Lyme guideline authors have
financial ties with pharmaceutical companies, making perfect financial
sense for this false claim of cure.
It is only the undeserved clout of the CDC and IDSA and the gullibility
of the media that give this incredible information any credibility.
The widespread misperception that Lyme disease is relatively rare may
be an additional possible reason why more research on new antibiotics
or a cure is not performed by drug companies who are attracted by
expensive drugs and large markets.
Allocations of Lyme disease research grants by the National Institutes
of Health (NIH) appear to be clearly biased. Many of these were awarded
by the former Lyme disease program manager, Phillip Baker, who is now
heading the American Lyme Disease Foundation (ALDF), an IDSA ally. The
Lyme disease guideline authors and their cohorts received an
exorbitant share of available grants. For example, from 1976 to 2008,
the aforementioned Allen Steere received 71 grants from the NIH. Of
33 were titled “Lyme Arthritis; A New Epidemic Disease.” It appears
that Steere has yet to enlighten the world with the fruits of his
research efforts for this particular study.
Many of these studies were designed around arriving at a predetermined
outcome. One example is a study by Mark Klempner, one of the IDSA Lyme
guideline authors, to “prove” that long-term antibiotic treatment
is not effective, "Two Controlled Trials of Antibiotic Treatment in
Patients with Persistent Symptoms and a History of Lyme Disease"
2001. There is some question whether or not this study was, in fact,
designed to fail. Treatment doses, choice of antibiotics, and duration
of treatment have been criticized as being inadequate. Selection of
patients in the study was also biased.
This study has been discredited, most recently in the IDSA Lyme
guideline review forced by the Connecticut Attorney General. The
statistical manipulations used in the Klempner study were exposed
review hearings. Yet it continues to be a mainstay of IDSA treatment
Perhaps the most damning comment regarding Lyme disease research by
these favored few is by Willy Burgdorfer for whom the Lyme bacterium
was named. He recently stated, “Money goes to people who have, for the
past 30 years, produced the same thing—nothing.”
Trivialization of Lyme disease and the denial of chronic Lyme disease
by IDSA also contribute to the lack of meaningful research in Lyme
Funding for Lyme disease research, concentrated in the hands of a few,
is dwarfed by funding for other diseases with no known cause such as
fibromyalgia, MS, and Parkinson’s that can be a misdiagnosis of Lyme
disease and also a source of profit for drug companies through
symptomatic treatment. Researchers in these other conditions with no
known cause do not want their cash flows threatened.
As of yearend 2009, there were 2126 US patents using the search term
“Lyme + disease” issued since 1976. For purposes of comparison, using
similar search terms there were 82 patents for Multiple Sclerosis, 328
patents for Parkinson’s disease, 862 patents for Alzheimer’s disease,
and 1292 patents for fibromyalgia. Considering that the IDSA authors,
of which have patent interests, state that Lyme disease is “hard to
catch and easy to cure,” a number of people seem to believe it has
enormous profit potential.
The lack of significant scientific progress in Lyme disease and the
dismissal of scientific evidence that does not support IDSA’s views may
be partially as a result of the protection of financial interests in
Apart from the patent conflicts of the IDSA Lyme guideline authors, the
most disturbing aspect of this are the patents held by the CDC.
Barbara Johnson, a microbiologist with the CDC, has a patent interest
in the ELISA test recommended by IDSA and the CDC. Dr. Johnson is also
listed as an advisor for the IDSA Lyme disease guidelines. The CDC also
has Lyme disease vaccine patents.
Some informed observers believe that the scientific fraud associated
with Lyme disease is mainly due to vaccine interests. One example of
this is the elimination by the CDC of bands 31-kDa and 34-kDa, both
to Lyme disease, in the serodiagnostic criteria formulated by the CDC.
As previously mentioned, this has been a contributing factor to the
underdiagnosis of Lyme disease. The elimination of these two bands is a
direct result of the failed Lymerix vaccine which used outer surface
protein A (band 31 kDa).
Lyme vaccine patents have been summarized in the following document;
Medical testing laboratories are beneficiaries of Lyme disease directly
Directly, medical testing laboratories benefit from the large numbers
of Lyme disease tests (and coinfections) ordered in the US and abroad.
In the US, Lyme tests are ordered mostly in known endemic areas. The
number of tests for Lyme disease and other tick borne infections will
undoubtedly increase as the spreading geographic distribution is
Precise figures for the size of the Lyme test market are difficult to
obtain and those that are available vary greatly. In a 1999 NIH grant,
Brook Biotechnologies, a manufacturer of Lyme tests, stated that in the
there are more than 5 million Lyme Elisa tests and 500,000 Lyme Western
Blot tests performed each year. (NIH Grant 2R44AI038724-02 from
National Institute Of Allergy And Infectious Diseases IRG: ZRG5)
Including foreign testing, the figures would about double.
Assuming the number of tests ordered has increased in line with CDC
reported cases (about 65% since 1999), this would bring the 2008
figures to over 8 million for ELISA tests and over 800,000 for Western
tests. Again, inclusion of foreign tests would double these figures.
Figures for specialized Lyme and coinfection tests are not included.
Using $70 as the price for an ELISA and $200 for Western Blots, this
would put the size of the US market at approximately $600 million for
the ELISA and $150 million for the Western Blot, or a total of $750
million. The worldwide figure for Lyme testing approaches or exceeds
$1.5 billion for the ELISA and Western Blot tests alone.
The two-tier requirement dictated by the IDSA/CDC is a major factor in
the volume of ELISA tests ordered. As mentioned previously, the CDC’s
Barbara Johnson has a patent interest in the ELISA. IDSA Lyme guideline
authors and/or their associates have financial interests in tests and
in medical laboratories. An example would be Raymond Dattwyler, an
of the 2000 and 2006 IDSA Lyme guidelines, having a financial stake in
Brook Biotechnologies mentioned above. The technology is now
under license to Baxter Diagnostics. http://www.biotech.sunysb.edu/industDev/comp-dev.html
Dr. Dattwyler is/was also said to be an
advisor to the CDC and the FDA.
Indirectly, “no Lyme” is a financial bonanza for test laboratories.
Typically, a multitude of tests are ordered to try to find the cause of
the diverse symptoms experienced by Lyme disease patients. Market
difficult to determine but the amount most certainly dwarfs Lyme
disease testing and is most certainly in the multibillions of dollars
The current unreliable and inaccurate tests for Lyme disease not only
lead to underdiagnosis but also lead to repeat testing and testing for
other conditions if Lyme is ruled out by tests. Medical testing
would prefer that the current state of affairs in Lyme disease
continues for their immense financial benefit.
There are many charities built around diseases that may in fact be
misdiagnosed Lyme disease or caused by Lyme disease. This is a
multimillion dollar business and to name a few examples, includes The
Fibromyalgia Association, The National Multiple Sclerosis Society, The
Parkinson’s Disease Foundation, and The ALS Association. For example,
The National MS Society tax statement filed with the IRS shows over
$109 million in 2008 income. Foreign MS Societies are not included. The
ALS Association shows over $50 million in revenues for 2008. The
Arthritis Foundation states revenues of $133 million in 2007. In 2001,
Allen Steere, one of the IDSA Lyme guideline authors, was honored as a
“Research Hero” by the Arthritis Foundation.
While the MS Society has suggested screening for Lyme disease, the
unreliable ELISA test is used and probably not consistently done. As
far as is known, none of the other disease charities suggest any
screening for Lyme disease.
If Lyme disease was found to be the causative factor of a significant
portion of these conditions, charitable funding for these organizations
would suffer a significant drop.
Similar to disease charities, specialists who treat patients diagnosed
with diseases that can be misdiagnosed Lyme disease also have monetary
turf to protect. There would be a significant drop in their patient
base if their patients were found to have Lyme disease instead of
diseases with no known cause which Lyme disease can mimic. So this is
another group that
may not want to see many Lyme disease accurately diagnosed.
Currently, it seems to be an exception for a person to get disability
benefits with a diagnosis of Lyme disease. People who tend to be
successful in applying for disability benefits do so with proof of
inability to work.
Trivialization of Lyme disease by IDSA and the CDC discourage doctors
from offering opinions that would support a diagnosis of inability to
work. Doctors who evaluate cases for the Social Security Administration
uninformed about Lyme disease and likely use the IDSA guidelines as
their source of information. The serious and disabling consequences of
Lyme disease are ignored.
Proper recognition of the disabling consequences of Lyme disease would
undoubtedly add to disability payments by the government and employers.
real estate prices;
It does not appear that real estate prices in areas where Lyme disease
is known to be endemic have been significantly affected by this
knowledge. Even in the epicenters of Connecticut and New York, real
have been more recently impacted by macroeconomic factors, not Lyme
Similarly, the potential impact of Lyme disease on tourism is difficult
to assess. But it could provide an explanation of why states that are
not clearly recognized as endemic areas minimize or refute the threat
of Lyme disease in their state.
Some other observations are provided below;
“Lyme disease, the multisystem illness caused by the tick-borne
spirochete, Borrelia burgdorferi, has emerged as a threat to public
health worldwide. It is a particularly vexing problem in the United
States where it is
growing in range and intensity. In fact, in some hyperendemic regions
of New York and New England, Lyme disease is now such a threat that it
with all sorts of outdoor activities, and has even led to depreciation
of real estate values.” (1991)
“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.” (1993)
Employers, particularly those who hire workers for outdoor work in
areas known to be endemic for Lyme disease, may be exposed to potential
liability. Possibly the best known case of employer liability
Lyme disease is summarized below;
“The district court also found, as a matter of law, that Deviney's
injuries were not reasonably foreseeable. "The essential element of
reasonable foreseeability in FELA actions requires proof of actual or
notice to the employer of the defective condition that caused the
injury." Grano v. Long Island R. Co., 818 F. Supp. 613, 618 (S.D.N.Y.
Grano, employees of a railroad who contracted Lyme disease while
working on signal equipment brought FELA claims. The court found the
was aware that there were tick problems and that ticks, known carriers
of Lyme disease, were found in areas where workers would be. The
sprayed, but the spraying was mainly to kill poison ivy and no
particular attention was given to ticks. There was no testimony from
any of the
plaintiffs that they were bitten by ticks. The court also noted that
although Lyme disease was discussed as a problem, no comprehensive
developed to protect employees working in tick-infested areas. The
court held that the railroad knew or should have known of the tick
infestations and of the risk of infection by ticks which transmit Lyme
disease. The court then held that it was foreseeable that the employees
bitten by ticks and thereafter infected with Lyme disease.”
More recently there was a case involving a store manager who filed a
lawsuit claiming that she could not perform basic job functions due to
Clearly, employers are another group who do not want to see Lyme
disease recognized for the serious and disabling infection it can be.
Some knowledgeable observers have suggested that biowarfare
considerations are an important factor to explain the currently poor
state of affairs in Lyme disease.
Jerry Leonard, a Lyme disease victim and advocate, has produced a
documented investigative report on
Lyme disease and biowarfare aspects titled Lyme Disease and Biowarfare:
A Summary of the Connections
There is no doubt that Lyme disease is being
investigated in government bioterror laboratories;
There is a very high degree of suspicion that Lyme disease was being
investigated at Plum Island Animal Disease Center and that an outbreak
initiated the spread of modern day Lyme borreliosis, or Lyme disease,
in nearby Old Lyme, Connecticut.
At least two Lyme experts, Alan Barbour and Mark Klempner (an IDSA Lyme
guideline author) have been placed in charged of BSL-4 laboratories,
the highest level of bioterror laboratory security. This also supports
the suspicion of Lyme disease as a bioweapon.
Some have suggested the interest in Lyme disease as a biowarfare weapon
stems from its stealth characteristics (the ability to mimic many other
conditions), to go undetected because of the poor diagnostic tests
available, and the ability to be genetically modified. In addition, a
naturally occurring tick that most people don’t feel or notice may be
an excellent method of delivery. Lyme disease also affects animals.
While not necessarily causing immediate death, the disease can
debilitate a population and cause significant resources to be allocated
to addressing this, placing a strain on a nation. It also seems that
Lyme bacterium can be altered with infections that would cause
fatalities, if desired.
Incapacitating agents have been recognized as a legitimate tool in
considerations may also help to make sense out of the nonsense of low
research funding levels for Lyme disease, the allocation of these
research dollars to an unproductive select few, why there are still no
timely and accurate tests for Lyme disease, the apparent lack of an
effort to find a cure, and its inherent underdiagnosis.
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