20 Reasons Why Lyme Disease Is Underdiagnosed – Summary
Miguel Perez-Lizano, June 2010
Note to Reader;
Lyme disease may well be the most underdiagnosed medical condition in the United States. Some reasons for this are given below. Many are related to monetary considerations. Supporting detail for these reasons is given in the full version of this document. http://lyme.kaiserpapers.org/20-reasons-why-lyme-disease-is-undiagnosed.html
Extremely poor “screening” test
The ELISA screening test recommended by the CDC is, at best, poor, failing to detect 50% or more of Lyme disease cases even under optimal conditions. Strain variations complicate testing. The unsatisfactory state of Lyme disease testing prompted a U.S Senate directive in Public Law 107-116 signed in 2002. “The Committee recognizes that the current state of laboratory testing for Lyme disease is very poor." The CDC and FDA were instructed to develop accurate tests.
No standard presentation of Lyme disease
Lyme disease can present in a variety of ways. The result is that it can be misdiagnosed as fibromyalgia, MS, Parkinson’s, CFS, Lou Gehrig’s, arthritis, cardiac problems, Alzheimer’s, ADD, vision and hearing problems, and other conditions, including psychiatric disorders.
Highly restrictive CDC surveillance criteria
For surveillance purposes, the CDC has issued serodiagnostic criteria to include only “certain” cases of Lyme disease. Perhaps fewer than 5% or 10% of proven Lyme disease cases can meet these criteria. Laboratories are forced to report results as “positive” or “negative” depending on whether they meet the CDC surveillance case definition. Uninformed doctors mistake the CDC case definition as diagnostic criteria.
Misleading implications of low “reported” cases
In addition to CDC surveillance criteria causing very low numbers of reported cases, most state health agencies are not well informed and may not report Lyme disease for various reasons, including the disease may have been acquired elsewhere. Most doctors mistakenly interpret low or no reported figures to mean Lyme disease in their state is rare or absent.
Lack of reliable tick and tick borne disease studies
Tick studies outside of recognized endemic areas are few and tend to be outdated or badly executed. Hence, tick borne diseases tend to be ignored in areas not recognized to be endemic.
The Infectious Diseases Society of America (IDSA)
The IDSA Lyme guidelines are issued by a few individuals who have blatant conflicts of interest and present flawed and biased information. These guidelines, the subject of an antitrust investigation, are used by most doctors because they are heavily publicized. The IDSA, with CDC backing, is the entity most responsible for the unhealthy state of affairs in Lyme disease.
The Centers for Disease Control
Employees at the CDC have their own conflicts of interest regarding Lyme disease. Mostly, these have to do with financial interests in tests and vaccines. The IDSA appears to be a dominant influence on the CDC which promotes the IDSA Lyme disease guidelines. Some IDSA Lyme guideline authors are former employees of the CDC or advisors to the CDC. Conversely, some CDC employees are advisors to IDSA.
Potential expense to HMO’s and insurers
The IDSA/CDC limited definition of Lyme disease, restrictive serodiagnostic criteria, limited treatment approach, and denial that Lyme disease can be a chronic infection are embraced by HMO’s and medical insurers to minimize risk of potential expenses.
Medical conformance enforcement and licensure threats
There are numerous cases of harassment against physicians who treat Lyme disease outside of IDSA guidelines. Many IDSA authors have testified against these physicians. Some states have adopted legislation to prevent this abuse. Many doctors will not help Lyme disease victims.
The media’s role in promoting public and medical ignorance
Rarely do the media question the CDC/IDSA Lyme disease information. They simply parrot and disseminate this information to the unsuspecting consumer, including doctors.
Symptomatic treatment of undiagnosed Lyme disease is a financial bonanza for drug companies.
The research racket
Research funding for Lyme disease has been concentrated to a favored few mainly connected with IDSA. One result is that the research has been biased.
Test and vaccine patents
The number of patents related to Lyme disease has dwarfed those of diseases that Lyme disease can mimic, such as MS or Parkinson’s disease. Lack of significant scientific progress in Lyme disease may be partially explained by the protection of monetary turf by these patent holders.
Medical testing laboratories
The IDSA/CDC two-tier test approach, a positive ELISA followed by Western Blots, is a financial windfall to testing laboratories and test patent holders but a detriment to diagnosis.
Potential impact on disease charities
Disease charities built around diseases that can be misdiagnosed Lyme disease amount to many hundreds of millions of dollars. If a substantial number of these diseases were found to be misdiagnosed Lyme disease, revenues for these specialized charities would likely suffer.
Potential impact on specialty diseases doctors
The impact would be the same as for disease charities on the income of these specialized doctors.
Potential impact on disability payments
Appropriate recognition of the prevalence and disabling aspects of Lyme disease could place a large burden on disability payments.
Potential impact on tourism and real estate prices
Tourism agencies and real estate professionals prefer to minimize the prevalence of Lyme disease.
Potential employer liabilities
Employers prefer that Lyme disease not be recognized either as a geographic threat or a serious health threat. This is particularly true for those who employ outdoor workers.
Some knowledgeable observers have suggested that biowarfare is an important contributor to the poor state of affairs in Lyme disease, including the lack of quick and reliable diagnostic methods and lack of a cure. There is no doubt that Lyme disease is being studied for biowarfare.
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