Lyme disease causes incredibly deep-seated controversies, pitting patients against their insurance companies, and members of the medical establishment against each other. The 8,000-member Infectious Diseases Society of America (IDSA) ridiculously maintains that Lyme is hard to catch and easy to treat:
“Treatment usually involves 10-28 days of oral antibiotics and is highly effective. When Lyme disease is diagnosed and treated quickly, 95 percent of people are cured within a few weeks of treatment … There is no convincing biologic evidence to support a diagnosis of chronic Lyme disease after completion of the recommended treatment.”(1)
Compare this to The International Lyme and Associated Diseases Society (ILADS) describes itself as:
“A group of forward-thinking doctors who understand the complexities of Lyme disease … Under-treated infections will inevitably resurface, usually as chronic Lyme, with its tremendous problems of morbidity and difficulty with diagnosis and treatment and high cost in every sense of the word.” ”Persistent symptoms have been noted in 25%-80% of patients with Lyme disease after 2-4 weeks of antibiotic therapy.”(2)
Key points of contention between the two groups are whether chronic Lyme exists, and whether antibiotics should be used long term. Some doctors have been hauled before their state medical boards for prescribing long-term antibiotics for Lyme patients.
The Lyme patient advocacy movement gained momentum in 2006, when IDSA updated its written guidelines for identifying and treating Lyme disease. Patients complained they were written primarily to spare insurance companies from having to pay for the long-term treatment of chronic Lyme. Connecticut Attorney General Richard Blumenthal launched an antitrust investigation into IDSA. In May, 2008, Blumenthal stated that:
“My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”(3)
IDSA agreed to create a new review panel. In April, 2010, IDSA decreed that its controversial guidelines on Lyme disease will stand unchanged??? The review panel agreed that all of the 69 original recommendations were “medically and scientifically justified” in the light of the evidence. The panel made a number of new recommendations that would revise the guidelines, but voted that the new revisions need not be considered until the next time the Guidelines are updated by IDSA.
Tina Garcia of Lyme Education Awareness Program, a non-profit in Mesa, Arizona, testified that the IDSA Practice Guidelines actually prevent patients in Arizona, the rest of the United States, Canada and Europe from receiving diagnosis and treatment.
“The truth about the IDSA Guidelines is that they accommodate some of the Guideline authors’ collaboration with the CDC in the development of a Lyme disease vaccine. It would take years and years for vaccine clinical trials to be conducted if those developing the vaccines acknowledged persistent Lyme infection. That is an inconvenient truth for these vaccine developers. It would be great if a safe and effective Lyme vaccine was developed. However, it is inhumane to sweep so many suffering patients under the carpet and deny them treatment in order to bring a vaccine to market.”(4)
On one hand, the CDC endorses IDSA’s guidelines. On the other hand, there is no rule that doctors must follow them. The problem is, as Blumenthal wrote:
“The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions.”
Meanwhile, many argue whether antibiotics should even be used extensively in cases of chronic Lyme. The first generation of Lyme-literate-medical-doctors (LLMDs) primarily used long-term antibiotics. In recent years, others have focused less on pharmaceutical agents.
The battle lines have been drawn; both patients and doctors get caught in the crossfire when greed rules companies and congress.
- http://www.idsociety.org/lymediseasefacts.htm, accessed May, 2009
- Raphael B. Stricker, Counterpoint: Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease,Antibiotic Therapy and Lyme Disease CID 2007:45 (15 July) 149
- Public Health Alert, July 2010
Adelson ME, Rao RV, Tilton RC, et al. Prevalence of Borrelia burgdorferi, Bartonella spp., Babesia microti, and Anaplasma phagocytophila in Ixodes scapularis ticks collected in Northern New Jersey. J Clin Microbiol 2004; 42:2799–801.
Brorson, O, Grapefruit seed extract is a powerful in vitro agent against motile and cycstic forms of Borrilia burgdorferi sensu lato, Infection, June 2007; 35 (3): 206-8
Pamela Weintraub, Cure Unknown-Inside the Lyme Epidemic, St. Martin’s Press, 2008, p.169
R Forest, Daryl Hall speaks out on his battle with Lyme disease, Seacoast Media Group, June 12, 2008