Gridlock On Capitol Hill - Part III

Political gridlock on Capitol Hill has been dominating the news lately. Take a break from the sequestration coverage and check out what the last three witnesses had to say at the hearing on the global challenges of Lyme disease. 

Mark Eshoo

Dr. Eshoo, the head of new technology at the IBIS Biosciences Division of Abbott Laboratories, spoke about the need for developing better diagnostics for Lyme disease and other tickborne co-infections. He described how Lyme disease becomes chronic in mice by evading the immune system by attacking the skin, the joints and the nervous system. This led into a discussion about the best time to treat Lyme disease being early on, but like I have mentioned previously, Lyme disease is often misdiagnosed as something else if a bullseye rash isn't present. It can take up to three weeks or more after a body has been infected with Lyme disease to build up antibodies to test positive during a Lyme test. Yes, you could end up with a negative Lyme test if you get tested too early after infection. Dr. Eshoo discussed how the IBIS division at the Lab he works at is working to improve the sensitivity of Lyme testing and to make a test that can directly detect the Lyme disease-causing bacteria instead of relying on testing for antibodies against the bacteria.

Two other areas he discussed were the demand for more research on variations in the Lyme disease bacteria and the need to find out why symptoms don’t resolve following treatment in some patients.

Interesting fact from Dr. Eshoo: Babesiosis, the disease caused by Babesia, is frequently mistaken for malaria in many parts of the world. I don’t like to brag, but Babesia is one of the co-infections I am getting treated for!

Evan White

Evan White delivered his testimony via Skype from New York City. He has been an advocate for Lyme disease for 20 years, born out of his unfortunate case of chronic Lyme disease. His story is a real-life case study that illustrates the point that in some cases short-term antibiotic treatment can be devastating and that long-term treatment can reverse the effects. He started off his testimony by stating the following: “Today I am a father, husband, practicing attorney, business owner, employer, and advocate for the rights of Lyme disease patients. Now, I mention that to illustrate a point, not to be boastful. My point is that were it not for long-term treatment by a careful and conscientious Lyme physician, none of this would be possible”. 

Evan was 11 years old, when he missed several days of school due to flulike symptoms. His physician diagnosed him properly with Lyme disease and he was put on a two-week course of antibiotics. The doctor’s response to him not recovering after 2 weeks of antibiotics was one that is very common and unfortunate in the Lyme community; he recommended physical therapy and psychological therapy. Evan was taken off of the medication and his situation deteriorated as he was transformed from an active, healthy, athletic child to one that could no longer care for himself. His doctors were surprised that Lyme disease and other co-infections were still present in his blood after further testing. Meanwhile his weight dropped to about sixty pounds, he experienced muscle atrophy and neurological defects. He said, for lack of a better term by age 13 he was essentially a vegetable. The doctors were baffled by his condition and their solution was to place him full time in children’s rehabilitation care. It was there that they gave him a brain scan that showed the Lyme disease had penetrated the blood brain barrier and caused hypoperfusion (decreased blood flow) in his brain. It offered insight into why he could no longer perform basic tasks like reading, talking and communication. The doctors were still confused about his condition and had no idea what he was suffering from and why. After two years bouncing from hospital to hospital and 6 months in the children’s institution he was sent home to receive outpatient therapy. His parents arranged an appointment with a prominent Lyme disease physician and he began a two year treatment with antibiotics, supplements and therapy. He eventually recovered, but it was a long and slow process that required hard work and support from his family and his doctor. 

Evan believes that the net effect of the current guidelines that are out there restricting treatment of Lyme disease patients ultimately deprives so many who suffer as he did, from the opportunity to have the healthcare option to seek long-term treatment that is effective, that is proven, and that has worked in allowing him and others to achieve normal, fulfilling, pain-free lives.

Ms. Stella Huyshe-Shires

The United Kingdom has suffered under a contentious environment among different Lyme disease stakeholders very much like that of the US; however the UK is making progress in developing a more cooperative environment. Stella Huyshe-Shires, the Chairman of Lyme Disease Action, in the UK, delivered her testimony via phone from her home.

Lyme disease Action is a non-profit organization striving to improve the understanding of Lyme disease in the UK on behalf of doctors, patients, careers, employers and healthcare providers. Lyme Disease Action is accredited to the UK Department of Health Information Standard; meaning that their information management processes have been verified to make correct, unbiased use of sources of evidence.

There is disagreement on the incidence of European Lyme disease and the possible scale of the problem. Europe is affected by the polarization of the view concerning Lyme disease that has arisen from the Infectious Diseases Society of America (IDSA)/International Lyme and Associated Diseases Society (ILADS) controversy. Health professionals usually claim that Lyme disease is over-diagnosed, but members of the public say Lyme disease is under-diagnosed. Why is Lyme disease difficult to diagnose and what can be done about it? Stella stated that diseases that are rare and difficult take doctors’ time and effort. They need unequivocal tests and clear guidelines. Unfortunately neither of those exist in the UK for Lyme disease. 

The former head of the Health Protection Agency laboratory, an independent body that protects the health and well-being of the population in the UK, served as a consultant to the IDSA panel in the development of 2006 guidelines for Lyme disease, so it is understandable that the views of the IDSA have prevailed in the UK. A small number of UK microbiologists have drawn up, under the British Infection Association, a position paper on Lyme disease. Despite its biased view of the literature, it is used by professionals to support the view that Lyme disease can be definitively diagnosed by serology and does not persist after recommended treatment. Unfortunately, European research shows otherwise.

Lyme Disease Action has started a process, mediated by the James Lind Alliance, which involves documenting doctors' and patients' uncertainties. To engage doctors in this process has been taxing and only achievable because the British Infection Association, following Lyme Disease Actions criticism of their paper, realized that input was important. The collective uncertainties are now being examined against the published literature and systematic reviews, and will result in a list of true uncertainties. The biggest challenge they face is the recognition and agreement on the uncertainties. [This cooperative approach contrasts with the environment in the U.S. A recommendation regarding Lyme disease made during a May 2005 meeting of CDC’s National Center for Infectious Diseases Board of Scientific Counselors, attended by the then President of the IDSA, that CDC should focus on science and not on the concerns of patient groups and that others may need to step in to assist CDC with public interface].

Earlier this year members of Lyme Disease Action attended the European Congress of Clinical Microbiology and Infectious Diseases in London. Discussions with a lot of international delegates were revealing. Northern European doctors face similar problems to the UK, with doctors relying heavily on test results. In Central Europe, where incidence of Lyme disease is far higher, Lyme is a big problem, and the doctor’s stated that they don't have good enough tests, and they don't know how to treat it.

Stella concluded her testimony by stating: “To us here there seem to be two principle aspects to the Lyme disease problem: Politics and the uncertainties of the science. The politics drives patients to seek care away from the UK National Health Service, which is failing them. And it is politics which is preventing recognition of the uncertainties. Politics, prestige, and defense of positions should not obstruct patient care nor hamper the search for understanding”.

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And that concludes the summary of what I heard and learned at the hearing. In my first post about the hearing I mentioned that representatives from the NIH, CDC and IDSA declined to attend. IDSA did submit written testimony to the Lyme subcommittee. As I’ve just begun my sixteenth month of treatment for chronic Lyme I find this response frustrating and close-minded. You can check it out here.