Gridlock on Capitol Hill - Part II

There were six witnesses who testified at the hearing. In part II of my Lyme disease hearing coverage I’ll share summaries of what the first three witnesses listed below testified. Yes, this is turning into a three part post. The digital age has broadened our horizons in almost every aspect of life, while also shortening our attention spans. I do not want to present an epic post that would cause your lovely eyes to glaze over and lose interest in my quest to arm you with Lyme-knowledge.

Witnesses:

• Patricia Smith, President of the Lyme Disease Association
• Stephen W. Barthold, Ph.D., Distinguished Professor of the Dept. of Pathology, Microbiology and Immunology Center of Comparative Medicine, School of Veterinary Medicine at the Univ. of California
• Raphael Stricker, M.D., Vice President of the International Lyme and Associated Diseases Society
• Mark Eshoo, Ph.D. Director, New Technology Development, Abbott Laboratories
• Evan White, Lyme disease Patient
• Ms. Stella Huyshe-Shires, Chair, Lyme Disease Action

Patricia Smith

Patricia Smith has traveled the country for the past 20 years listening to patients, scientists, doctors and government officials discuss Lyme disease. Her testimony was full of jaw-dropping information, and is available here in written form. It is two pages long and worth the read as it shows the effect that the controversy surrounding Lyme disease has on patients and their families. 

Patricia Smith referred to Lyme disease as a medical and political debacle. She stated that many doctors refuse to diagnose outside certain limited federal criteria and subsequently insurance companies can refuse to pay for care. She also lamented the fact that thirty-seven years after Lyme was recognized, sick patients cannot get diagnosed and not be treated because of antiquated, unsubstantiated tests which may pick up 50 percent of cases.

Stephen W. Barthold

Dr. Barthold has been researching Lyme disease for 25 years in animal model systems, with funding provided by NIH. One of the things that has intrigued him the most is the fact that Borrelia persists in its immunologically competent hosts as the rule, not the norm, thus proving that persistence is part of its biological behavior. This has been shown in 100 percent of mice, rats, hamsters, guinea pigs, gerbils, dogs, and nonhuman primates--two different species of nonhuman primates. He explained that when you have an organism that is a professional at persisting and evading host immune clearance, you have a problem when you approach it with antibiotics. The antibiotics are likely to fail under some circumstances, if not many circumstances.  By stating these facts gathered through his research, Dr. Barthold finds himself in a rather unique spot. He started in the mainstream of Lyme disease research and is now considered somewhat of a pariah, in terms of the established medical opinion.

Dr. Barthold’s studies in animal models have found that early treatment during the pre-immune phase of the infection can cure the animals. But during persistent infection, (advanced Lyme disease)100 percent of the animals remain persistently infected after antibiotic treatment. This has been described in a number of different laboratories: One in Finland, one in New York, one in Louisiana, and one in Connecticut. It has been described in mice, in dogs, in nonhuman primates. It has been described with a number of different antibiotics, including ceftriaxone, doxycycline, tigecycline, amoxicillin, azithromycin. In his written testimony, Dr. Barthold included some unpublished data, which will hopefully will get published in the next year or so, that shows after a 12 month Lyme disease treatment of mice they saw a resurgence of spirochetes in very large numbers, equivalent to numbers of wild-type infection in which the animals had not been treated with antibiotics. “The significance of continued infection indeed needs to be better understood, it is time to recognize that Lyme disease is not a simple bacterial infection”. He also mentioned that researchers follow the money and that if enough incentives were given, there would be more research done. He underscored that people on both sides of the issue are “good” people but that they just look at the issue from a different perspective

Raphael Stricker

The International Lyme and Associated Diseases Society (ILADS) point of view was represented by Dr. Stricker. He emphasized the fact that the Infectious Diseases Society of America (IDSA) clinical guidelines only address the immediate bite. [Julie’s Commentary: For people like me who never saw a tick on their being, let alone knew they were bitten, these guidelines are useless]. He also stressed the need for national protection for doctors who treat chronic Lyme disease and better diagnostics from NIH. He urged the group to look at the evidence of persistence infection from Borrelia burgdorferi (Bb).

Dr. Stricker is a practicing physician in San Francisco with a specialty in internal medicine and he currently has 2,000 Lyme disease patients. He treats patients from Canada to Costa Rica, from Great Britain to Brunei, and from Germany to Japan. Many of these patients have been ill for years and have been unable to find a medical provider who can diagnose and treat them for Lyme disease. Dr. Stricker stated that in spite of the fact that the disease is so common, medical providers are often ignorant about how to diagnose and treat Lyme disease. There are a number of reasons for this ignorance:

• The telltale bullseye rash that is a classic sign of Lyme disease may be absent in more than half of Lyme disease patients
• Patients are often unaware of a tick bite, in many parts of the world the black legged tick that transmit Lyme disease may be no larger than a poppy seed
• Lyme disease has a wide range of symptoms, and physicians are often unaware of the various manifestations of the disease
• Testing for Lyme disease remains problematic. Most laboratories around the world use tests that are unstandardized and insensitive; these tests give negative results in about half the cases of Lyme disease
• Treatment for Lyme disease has evolved in a haphazard fashion; the “standard of care” put forth by specialty medical organizations such as the IDSA only address acute infection immediately following a tick bite. The IDSA standard ignores the more common and severe chronic form of Lyme disease.

To Be Continued...