International Lyme and Associated Diseases Society

The International Lyme and Associated Diseases Society (ILADS, pronounced /ˈaɪlædz/) is a non-profit advocacy group[1] which advocates for greater acceptance of the controversial and unrecognized diagnosis "chronic Lyme disease".[2] 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[3] due to the disagreement with mainstream consensus medical views on Lyme disease.[1]

ILADS sustains the controversy as to the existence of "chronic Lyme disease", including advocating for long-term antibiotic treatment, but the existence of persistent borrelia infection is not supported by high quality clinical evidence, and the use of long term antibiotics is dangerous and contradicted.[4] Major US medical authorities, including the Infectious Diseases Society of America,[5] the American Academy of Neurology,[6] and the National Institutes of Health,[7] 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"[5]: 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.[5]: 1115 [6]: 99 [7] The consensus calls for more research into understanding the pathologies that afflict patients with post-Lyme syndrome and into better treatments.[citation needed]

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.[8]

False chronic Lyme disease diagnoses are frequently justified due to non-specific symptoms.[4] However, a questionnaire of non-specific symptoms based on an ILADS symptom checklist was found to be not useful for distinguishing patients with post-Lyme symptoms from those with other conditions.[9]

ILADS has also promoted Morgellons, another condition unrecognized by medical science.[10][11] Morgellons—which is generally considered a form of delusional parasitosis by mainstream doctors—involves a belief that fibers are being produced by the skin.[12] Among the top promoters of Morgellons is former ILADS president Raphael Stricker, who claims that chronic Lyme disease is causing the fibers to grow.[11][12] In 2015, The Atlantic reported that Stricker treats people who believe they have Morgellons with long-term antibiotics.[11]

  1. ^ a b 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. PMID 20813379.
  2. ^ Whelan, David (March 12, 2007). "Lyme, Inc". Forbes. Retrieved July 6, 2009.
  3. ^ "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. Archived from the original on 2015-09-23. Retrieved 2015-09-21.
  4. ^ a b Feder HM, Johnson BJ, O'Connell S, et al. (October 2007). "A critical appraisal of "chronic Lyme disease"". N. Engl. J. Med. 357 (14): 1422–1430. doi:10.1056/NEJMra072023. PMID 17914043.
  5. ^ a b c 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". Clin. Infect. Dis. 43 (9): 1089–1134. doi:10.1086/508667. PMID 17029130. S2CID 4824991.
  6. ^ a b 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. doi:10.1212/01.wnl.0000265517.66976.28. PMID 17522387.
  7. ^ a b ""Chronic Lyme Disease" Fact Sheet". National Institute of Allergy and Infectious Diseases. September 3, 2015.
  8. ^ Cooper JD, Feder HM (December 2004). "Inaccurate information about lyme disease on the internet" (PDF). Pediatr. Infect. Dis. J. 23 (12): 1105–1108. doi:10.1097/01.inf.0000145411.57449.f3. PMID 15626946.
  9. ^ Zomer, T.P.; et al. (January 2019). "Non-specific symptoms in adult patients referred to a Lyme centre". Clinical Microbiology and Infection. 25 (1): 67–70. doi:10.1016/j.cmi.2018.09.016.
  10. ^ Fischer, Molly (2019-07-24). "What Happens When Lyme Disease Becomes an Identity?". The Cut.
  11. ^ a b c Foley K (January 18, 2015). "Diagnosis or Delusion?". The Atlantic.
  12. ^ a b Beuerlein KG, Balogh EA, Feldman SR (August 2021). "Morgellons disease etiology and therapeutic approach: a systematic review" (PDF). Dermatol Online J. 27 (8). doi:10.5070/D327854682. PMID 34755952. S2CID 243939325.