US Congressional Hearing on Lyme Disease

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This meeting took place in the US House of Representatives on July 17, 2012.

[Please scroll ahead, hearing begins at minute 28:00 of the video.]

Subcommittee on Africa, Global Health, and Human Rights
Chaired by Christopher H. Smith (R-NJ)

Witnesses from the IDSA, CDC and NIH were invited to the hearing but did not attend.

Attending witnesses:

Stephen W. Barthold, Ph.D. [scroll to 52:40]
Distinguished Professor
Department of Pathology, Microbiology and Immunology
Center of Comparative Medicine, School of Veterinary Medicine University of California, Davis

Persistence of the Lyme spirochete (B. burgdorferi) exists in animals; many studies, all over the world have found persistence in animals. [See, for example, material on EMBERS study, 2012 (ED)]

Raphael Stricker, M.D. [scroll to 56:50]
Vice President
International Lyme and Associated Diseases Society

2,000 Lyme patients in his San Francisco practice. Medical providers ignorant: rash absent in more than half of cases; bite often not evident; wide range of symptoms; testing is problematic (unstandardized and insensitive), producing negative results in about half test cases; treatment haphazard – IDSA Guidelines only addresses acute infection and ignores persistent infection. Lyme is an international disaster. Quote: “Almost two decades ago a courageous physician named Joseph Burrascano testified at a health committee hearing of the United States Senate. The committee had just been reassured by prominent members of the medical establishment that Lyme Disease was a trivial illness that was ‘hard to catch and easy to treat.’ Doctor Burrascano spoke these words: ‘The very existence of hundreds of Lyme Support Groups in the country and tens of thousands of dissatisfied, mistreated and ill patients whom these groups represent underscores the many problems that exist in the real world of Lyme Disease.’ Almost two decades later, those problems still exist.”

Mark Eshoo, Ph.D. [scroll to 1:03:36]
Director, New Technology Development

Developing tests. Co-infections are serious, too. Mice are the reservoir of the disease. The spirochete infects the parts of the mice for which immune response is difficult: skin, joints, nervous system; infection is similar with people. Current 2-tiered test is an indirect antibody test; has key problems. Abbott is working on direct detection of spirochetal DNA. Over 100 strains of Lyme bacteria in the world. Need more federal government funding for a sensitive early direct test.

Ms. Patricia Smith [scroll to 1:10:25]
Lyme Disease Association

Many patients confide that they’d rather have cancer. NIH studies conclusions were not effective. CDC’s Lyme surveillance regime is a shambles; reporting practices are based on myth.

Compounding the problem, the very strict Lyme definitions meant for surveillance-only are abused by mainstream medicine, insurance companies, pharmacists … and public officials.

On its website, CDC disclaims any responsibility, stating its criteria are for surveillance only, but its actions belie that position. CDC openly endorses IDSA Guidelines which are featured on its website, guidelines written by researchers, not clinicians who care about patient outcomes.

For example, the IDSA Guidelines recommend against any long-term treatment with antibiotics; they recommend against any alternative treatments; and they recommend against any [dietary] supplements for Lyme patients. Patients have no options open to them under these guidelines.

The CDC criteria form the basis of the IDSA Guidelines. Intertwined, inseparable, like the strands of a rope, they form a noose around the neck of Lyme patients.

Mr. Evan White [scroll to 1:19:55]
Lyme Disease Patient

Short-term treatment can be catastrophic. The [IDSA] Guidelines turn a blind eye to what we know is effective treatment. In a wheel-chair as a teenager. ‘This [Lyme-Literate] doctor seemed to understand exactly where I was; he had had Lyme Disease himself.’ The net effect of the current Guidelines deprives many patients the opportunity to seek effective treatment.

Ms. Stella Huyshe-Shires [scroll to 1:30:46]
Lyme Disease Action

The whole of Europe has been badly affected by the IDSA Guidelines. UK incidence is not known; incidence could be 20-times that recorded. Over 20,000 cases possibly unidentified misdiagnosed. Need unequivocal tests and clear guidelines; neither exists. Views of the IDSA have prevailed in the UK. Europe has multiple species of B. burgdorferi. No good-quality European trials. James Lind Alliance is making a documentation. Similar division of opinion in Europe along the ILADS – IDSA faultline. Doctors in Central Europe have more experience: Lyme is a big problem and we don’t have the test and we don’t know how to treat. Politics drives UK patients away from the failing National Health Service and prevents recognition of the scientific uncertainty.

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