Health Through Knowledge

The Serano Group

Saturday, December 13, 2008

What’s Going On?

Why doctors sound irrational when they talk about Lyme disease.

Those new to Lyme disease need to cross a threshold of disbelief. A medical system that ignores well-known infections and even becomes adversarial seems unbelievable. Yet we regularly hear stories of citizens denied care simply because they would like their doctor to consider Lyme disease as a cause of their symptoms. Many have positive tests for Lyme disease. Some are denied care even for problems unrelated to Lyme disease. They are told if you ignore Lyme disease and let me ignore it, maybe I will be your doctor. Doctors’ emotional responses to this disease predominates treatment and diagnosis so greatly that common standards of reason and decency are completely trampled.

It usually takes a specific, direct patient-doctor encounter for citizens and their families to see the true nature and extent of the problem.

The ignored reality is that Borrelia infections, including Lyme disease (Lyme borreliosis), often attack the central and peripheral nervous system and can cause extreme pain, loss of motor function, cognitive decline, and psychological problems. Endocrine and immune system dysfunction are also common. Untreated, Lyme borreliosis can produce blindness, disability, and death. These symptoms and outcomes are nearly identical to syphilis, another spirochetal disease that has been studied for centuries.

"Lyme disease" has something quite more than a bacterial infection. It has become a construct of politics and emotions where self-appointed authorities and crusading institutions try to dictate diagnosis and treatment of Borrelia infections to the medical community. No other disease, particularly among those as common as borreliosis, is handled so much as an ideology as opposed to a medical condition. The Centers for Disease Control collaborate with the Infectious Disease Society of America to violate basic tenets of modern medicine—treating an infection until symptoms resolve, for example—all the while claiming adherence to supporting science. Rather than conduct meaningful research and learn from experience, ideologues force fit biological realities into their limited template and reject and censor the preponderance of evidence and everyday experience. Guidelines and theories are manufactured and research manipulated for no purpose but to maintain status quo and commercial interests.

This situation did not develop overnight. When confronted with the reality of increasing prevalence, morbidity, and mortality of Borrelia infections in the 1980s, a small group of public health officials cultivated and promoted researchers willing to advance a simplistic agenda. Instead of searching for effective methods of diagnosis and treatment, they advocated minimizing the prevalence and virulence of borreliosis. The routine promotion of ignorance and misstated fact defies belief. The persistence of this process shows too clearly the inability of the research and medical communities to self-regulate. When the majority of the medical establishment accepts extremist, illogical views, specific harm results.

Science continues to play an embarrassingly small role in Lyme disease except as a tool for larger political and commercial interests. Medical journals process Borrelia studies differently than any other research. Papers are published stating most positive Lyme disease test results are false and all negative test results true. DNA evidence from PCR tests, accepted as sufficient to mete capital punishment in the legal system, is regarded insufficient and unreliable for diagnosis of Lyme disease. When citizens are given a rote treatment for Lyme disease and remain ill, guidelines state physicians should assume the infection has been eliminated; and, because textbooks decree the treatment should always work, the only explanation permitted is that a new, unidentifiable disease process has begun. Absurdities compound until new absurdities are not even noticed or debated.

Beyond organizational and institutional involvement, lack of individual responsibility is primary to the problems of Lyme disease. Terribly misguided institutions would not exist without willing individual participation to produce biased studies and approve compromised policy.

Beyond the distortion, there is a reality. Much can be learned if resources are not squandered on propaganda science perpetrating a misguided agenda. Philanthropist George Soros has said that propaganda does society its greatest disservice by obscuring the truth, thereby preventing advances in our knowledge. When truth is obscured, we cannot learn from either our mistakes or successes.

Correcting this abysmal situation requires efforts on two fronts. First, from a global perspective, a new framework for conceptualizing borreliosis is required. Rather than repeat fabricated theories for the disease—including tick-bite, EM rash, limited geography and inaccurate test definitions for the disease, and a single-treatment-cures-all dogma—we need to accurately characterize the scope and boundaries of borreliosis. Secondly, from an individual’s perspective, which is where all medical treatment should be focused, we must examine detailed realities of the disease and devise the best diagnosis and treatments so we can proceed sensibly. Society cannot allow the irresponsible conclusions institutionalized for the last twenty years to continue condemning individuals to needless pain, disability, and death.

The Serano Group is a small organization and conventional wisdom says we should find some way to work with or influence larger organizations. But, after twenty years of support groups and a few independent researchers attempting reconciliation, it is obvious the CDC, NIH, and the IDSA are unable or unwilling to accept rational approaches to investigating and characterizing borreliosis. Replacement of the present commercial Lyme disease model is necessary.

None of this is radical or revolutionary. It is a return to basic, sound medical practice where we identify microbial causes of disease, treat with the most effective antimicrobials available until infection is controlled, and provide care necessary to improve individual functioning and overall health. This is conventional, mainstream medicine. Calling it anything else is part of the propaganda.

The Serano Group strives to provide accurate information regarding issues of health and disease and endeavors to expose and publicize medical propaganda crippling and killing our neighbors. Appeals to ignorance producing doctors that say they cannot act on or consider Lyme disease until there is a definitive clinical trial is a ruse. Very little in medicine is done this way. We need to look at the realities of our world and respond to protect our citizens' lives and health.

Posted by Joel Spinhirne
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