International Lyme and Associated Diseases Society

The International Lyme and Associated Diseases Society (ILADS, pronounced /ˈaɪlædz/) is a non-profit advocacy group[1][2] which advocates for greater acceptance of the controversial and unrecognized diagnosis "chronic Lyme disease".[3] ILADS was formed by advocates for the recognition of "chronic lyme disease" including physicians, patients and laboratory personnel, and has published alternative treatment guidelines and diagnostic criteria[4] due to the disagreement with mainstream consensus medical views on Lyme disease.[1]

The ILADS mission statement is, "ILADS is a nonprofit, international, multidisciplinary medical society dedicated to the appropriate diagnosis and treatment of Lyme and associated diseases. ILADS promotes understanding of Lyme and associated diseases through research, education and policy. We strongly support physicians, scientists, researchers and other healthcare professionals dedicated to advancing the standard of care for Lyme and associated diseases."[5]

Controversy exists as to the existence of "chronic Lyme disease", with some advocating for the use of long term antibiotics for treatment of a postulated persistent infection. However, the assumption that there is a persistent infection is not supported by high quality clinical evidence, and the use of long term antibiotics is not recommended.[6] Major US medical authorities, including the Infectious Diseases Society of America,[7] the American Academy of Neurology,[8] and the National Institutes of Health,[9] are careful to distinguish the diagnosis and treatment of "patients who have had well-documented Lyme disease and who remain symptomatic for many months to years after completion of appropriate antibiotic therapy"[7]:1116 from patients who have not had well-documented Lyme disease; the consensus accepts the existence of post–Lyme disease symptoms in a minority of patients who have had Lyme. The consensus rejects long-term antibiotic treatment even for these patients, as entailing too much risk and lacking sufficient efficacy to subject patients to the risks.[7]:1115[8]:99[9] The consensus calls for more research into understanding the pathologies that afflict patients with post-Lyme syndrome and into better treatments.

ILADS also calls for more research into better diagnostics and treatments. However, ILADS has questioned the generalizability and reliability of some of the trials referred to by IDSA and the reliability of the current diagnostic tests.[10] As a result of this fundamentally different view of the nature of long-term effects and persistence of Borrelia infection, and in its role as an advocate for aggressive treatment of patients it identifies as having Borrelia infection, ILADS has produced diagnostic and treatment recommendations that lead to long-term antibiotic treatment of patients with "chronic Lyme disease" that directly contradict the consensus positions. For example, ILADS recommends a clinical diagnostic approach to Lyme (as opposed to a diagnosis based primarily on laboratory tests).[11] Additionally it calls for laboratory tests that the consensus deems unreliable.[12] Having diagnosed a patient as having a Borrelia infection, it therefore recommends variations of antibiotic treatment, such as longer term or pulsed treatment, since these patients have already failed the standard treatment.[13]

A 2004 article in the Pediatric Infectious Disease Journal on the prevalence of inaccurate online information about Lyme disease cited the ILADS website as a source of such inaccurate material.[14] One source reported that several current and former phsyician officers of ILADS had been sanctioned by federal agencies or state medical boards.[2]

References

  1. 1 2 Johnson, Michael; Feder, Henry M. (December 2010). "Chronic Lyme Disease: A Survey of Connecticut Primary Care Physicians". The Journal of Pediatrics. 157 (6): 1025–1029.e2. doi:10.1016/j.jpeds.2010.06.031.
  2. 1 2 Auwaerter, P. G.; Bakken, J. S.; Dattwyler, R. J.; Dumler, J. S.; Halperin, J. J.; McSweegan, E.; Nadelman, R. B.; O'Connell, S.; Sood, S. K.; Weinstein, A.; Wormser, G. P. (21 November 2010). "Scientific evidence and best patient care practices should guide the ethics of Lyme disease activism". Journal of Medical Ethics. 37 (2): 68–73. doi:10.1136/jme.2009.032896.
  3. ↑ Whelan, David (March 12, 2007). "Lyme, Inc.". Forbes. Retrieved July 6, 2009.
  4. ↑ "National Guideline Clearinghouse | Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease.". www.guideline.gov. Retrieved 2015-09-21.
  5. ↑ "ILADS About Us". Retrieved 6 September 2015.
  6. ↑ Feder HM, Johnson BJ, O'Connell S, et al. (October 2007). "A critical appraisal of "chronic Lyme disease"". N. Engl. J. Med. 357 (14): 1422–30. PMID 17914043. doi:10.1056/NEJMra072023.
  7. 1 2 3 Wormser GP; Dattwyler RJ; Shapiro ED; et al. (November 2006). "The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America" (PDF). Clin. Infect. Dis. 43 (9): 1089–1134. PMID 17029130. doi:10.1086/508667.
  8. 1 2 Halperin JJ, Shapiro ED, Logigian E, et al. (July 2007). "Practice parameter: treatment of nervous system Lyme disease (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology". Neurology. 69 (1): 91–102. PMID 17522387. doi:10.1212/01.wnl.0000265517.66976.28.
  9. 1 2 ""Chronic Lyme Disease" Fact Sheet". National Institute of Allergy and Infectious Diseases. September 3, 2015.
  10. ↑ Stricker RB (July 2007). "Counterpoint: long-term antibiotic therapy improves persistent symptoms associated with Lyme disease". Clinical Infectious Diseases. 45 (2): 149–57. PMID 17578772. doi:10.1086/518853.
  11. ↑ ILADS About Lyme, Item #2
  12. ↑ ILADS About Lyme, Item #7
  13. ↑ ILADS Treatment Guidelines Summary
  14. ↑ Cooper JD, Feder HM (December 2004). "Inaccurate information about lyme disease on the internet" (PDF). Pediatr. Infect. Dis. J. 23 (12): 1105–8. PMID 15626946. doi:10.1097/01.inf.0000145411.57449.f3.
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