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International Lyme and Associated Diseases Society

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

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. Major US medical authorities, including the Infectious Diseases Society of America, the American Academy of Neurology, and the National Institutes of Health, 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" 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. The consensus calls for more research into understanding the pathologies that afflict patients with post-Lyme syndrome and into better treatments.

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.

False chronic Lyme disease diagnoses are frequently justified due to non-specific symptoms. 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.

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

References

  1. ^ 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. ^ 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. ^ 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. ^ 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. ^ ""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. ^ Foley K (January 18, 2015). "Diagnosis or Delusion?". The Atlantic.
  12. ^ 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.

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