Chronic Lyme disease

Chronic Lyme disease is distinct from untreated late-stage Lyme disease, which can cause arthritis, peripheral neuropathy and/or encephalomyelitis. Chronic Lyme disease is also distinct from post-treatment Lyme disease syndrome (PTLDS) when symptoms linger after standard antibiotic treatments.{{cite web |url=https://www.cdc.gov/lyme/postLDS/index.html |title=Post Lyme Disease Syndrome |publisher=Cdc.gov |date=February 7, 2013 |access-date=July 5, 2013 |archive-date=February 27, 2015 |archive-url=https://web.archive.org/web/20150227054926/http://www.cdc.gov/lyme/postLDS/index.html |url-status=live }}{{cite journal |vauthors=Cairns V, Godwin J |title=Post-Lyme borreliosis syndrome: a meta-analysis of reported symptoms |journal=Int J Epidemiol |volume=34 |issue=6 |pages=1340–45 |date=December 2005 |pmid=16040645 |doi=10.1093/ije/dyi129|doi-access=free }} PTLDS is estimated to occur in less than 5% of people who had Lyme disease and were treated.{{cite book|last1=Bope|first1=Edward T.|last2=Kellerman|first2=Rick D.|title=Conn's Current Therapy 2013: Expert Consult: Online|date=2012|publisher=Elsevier Health Sciences|isbn=978-1455733347|page=151|url=https://books.google.com/books?id=SwRBtIPU5yQC&pg=PT151|language=en}} In contrast to these recognized medical conditions, the promotion of chronic Lyme disease has been accused of being health fraud.{{cite news |newspaper=Connecticut Mirror |title=Treating 'chronic Lyme disease': Is it medical fraud? |vauthors=Zemel L, Auwaerter PG |date=13 December 2019 |url=https://ctmirror.org/category/ct-viewpoints/treating-chronic-lyme-disease-is-it-medical-fraud-lawrence-zemel/ |archive-date=21 December 2019 |access-date=21 December 2019 |archive-url=https://web.archive.org/web/20191221154041/https://ctmirror.org/category/ct-viewpoints/treating-chronic-lyme-disease-is-it-medical-fraud-lawrence-zemel/ |url-status=live }} In many cases there is no objective evidence that people who believe they have chronic Lyme have ever been infected with Lyme disease: standard diagnostic tests for infection are often negative.{{cite journal | title = A Critical Appraisal of "Chronic Lyme Disease" | journal = NEJM | volume = 357 | issue = 14 | pages = 1422–30 |date=October 2007 | pmid = 17914043 | doi = 10.1056/NEJMra072023 | last1 = Feder | first1 = HM | last2 = Johnson | first2 = BJB | last3 = O'Connell | first3 = S | display-authors = 3 | last4 = Shapiro | first4 = ED | last5 = Steere | first5 = AC | last6 = Wormser | first6 = GP | author7 = Ad Hoc International Lyme Disease Group | last8 = Agger | first8 = WA | last9 = Artsob | first9 = H }}{{cite web | url = http://www.idsociety.org/Lyme_Facts/ | title = Ten Facts You Should Know About Lyme Disease | publisher = Infectious Diseases Society of America | date = May 10, 2011 | access-date = June 18, 2013 | archive-date = May 29, 2013 | archive-url = https://web.archive.org/web/20130529060105/http://www.idsociety.org/Lyme_Facts/ | url-status = dead }}

While it is undisputed that people can have severe symptoms of an illness, the cause and appropriate treatment promoted by "chronic Lyme" advocates are controversial. The symptoms are similar to those of fibromyalgia or chronic fatigue syndrome.{{cite journal |author=Wolfe F |title=Fibromyalgia wars |journal=J. Rheumatol.|volume=36 |issue=4 |pages=679–83 |date=April 2009 |pmid=19342721 |doi=10.3899/jrheum.081180 |s2cid=2091976 |doi-access=free }} Fibromyalgia can be triggered by an infection, and then persist when the infection is completely removed from the body. A few doctors attribute these symptoms to persistent infection with Borrelia, or co-infections with other tick-borne pathogens, such as Ehrlichia and Babesia.{{cite journal |author=Cameron D |title=Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease |journal=Expert Review of Anti-infective Therapy |volume=12 |issue=9 |pages=1103–35 |year=2014 |doi=10.1586/14787210.2014.940900 |pmid=25077519 |author2=Johnson LB |author3=Maloney EL |pmc=4196523}}{{cite web | url = http://lymewebcast.idsociety.org/ | publisher = Infectious Diseases Society of America | title = Lyme Disease Review Panel Hearing | last = Phillips | first = S | date = 2006-07-30 | access-date = 2010-12-09 | archive-date = 2010-11-01 | archive-url = https://web.archive.org/web/20101101115821/http://lymewebcast.idsociety.org/ | url-status = live }}{{cite journal|author=Cameron DJ|title=Generalizability in two clinical trials of Lyme disease |journal=Epidemiologic Perspectives & Innovations |volume=3 |pages=12 |doi=10.1186/1742-5573-3-12|pmid=17044928 |year=2006|pmc=1626453 |doi-access=free }} Some conclude that the initial infection may cause an autoimmune reaction that continues to cause serious symptoms even after the bacteria have been eliminated by antibiotics.{{cite journal |vauthors=Ercolini AM, Miller SD |title=The role of infections in autoimmune disease |journal=Clin. Exp. Immunol. |volume=155 |issue=1 |pages=1–15 |date=January 2009 |pmid=19076824 |pmc=2665673 |doi=10.1111/j.1365-2249.2008.03834.x}}

A review looked at several animal studies that found the persistence of live but disabled spirochetes following treatment of B. burgdorferi infection with antibiotics. The authors noted that none of the lingering spirochetes were associated with inflamed tissues and criticized the studies for not having adequately considered the different pharmacodynamics and pharmacokinetics of the antibiotics used to treat the animals in the trials versus what would be expected to be used to treat humans. The authors concluded, "There is no scientific evidence to support the hypothesis that such spirochetes, should they exist in humans, are the cause of post-Lyme disease syndrome."{{cite journal |vauthors=Wormser GP, Schwartz I |title=Antibiotic treatment of animals infected with Borrelia burgdorferi |journal=Clin. Microbiol. Rev. |volume=22 |issue=3 |pages=387–95 |date=July 2009 |pmid=19597005 |pmc=2708393 |doi=10.1128/CMR.00004-09 }}

Major U.S. medical authorities, including the Infectious Diseases Society of America, the American Academy of Neurology, and the National Institutes of Health, have stated there is no convincing evidence that Borrelia is involved in the various symptoms classed as CLD, and particularly advise against long-term antibiotic treatment as it is ineffective and potentially harmful.{{cite journal |author=Wormser GP |title=The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America |journal=Clin. Infect. Dis. |volume=43 |issue=9|pages=1089–1134 |date=November 2006 |pmid=17029130 |doi=10.1086/508667 |last12=Fish |first12=D|last13=Dumler |first13=JS |first14=RB |author2=Dattwyler RJ |author3=Shapiro ED |display-authors=3 |last4=Nadelman |first4=John J. |last5=Steere |first5=Allen C. |last6=Klempner |first6=Mark S. |last7=Krause |first7=Peter J. |last8=Bakken |first8=Johan S. |last9=Strle |first9=Franc|s2cid=4824991 |doi-access=free }}{{cite journal |vauthors=Halperin JJ, Shapiro ED, Logigian E, etal |title=Practice parameter: treatment of nervous system Lyme disease (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology |journal=Neurology |volume=69 |issue=1 |pages=91–102 |date=July 2007 |pmid=17522387 |doi=10.1212/01.wnl.0000265517.66976.28|s2cid=959269 |doi-access=free }} Prolonged antibiotic therapy presents significant risks and can have dangerous, even deadly, side effects.{{cite book |editor1=Gerald L Mandell |editor2=John E Bennett |editor3=Dolin, Raphael|title=Mandell, Douglas, and Bennett's principles and practice of infectious diseases|year=2010|publisher=Churchill Livingstone/Elsevier|location=Philadelphia, PA|isbn=978-0-443-06839-3|pages=Chapter 242|edition=7th}} Randomized placebo-controlled studies have shown that antibiotics offer no sustained benefit in people with chronic Lyme, with evidence of both placebo effects and significant adverse effects from such treatment.{{cite journal | title=Chronic Lyme Disease: An appraisal | author=Marques, Adriana | journal=Infect Dis Clin North Am |date=June 2008 | volume=22 | issue=2 | pages=341–60 | doi=10.1016/j.idc.2007.12.011 | pmc=2430045 | pmid=18452806}} Many people who believe that they have chronic Lyme have fibromyalgia. Fibromyalgia can be difficult to treat, and antibiotics do not work at all for fibromyalgia. A pressure group called the International Lyme and Associated Diseases Society (ILADS){{cite journal |author=Tonks A |title=Lyme wars |journal=BMJ |volume=335 |issue=7626 |pages=910–12 |date=November 2007 |pmid=17974685 |pmc=2048873 |doi=10.1136/bmj.39363.530961.AD}} says that the persistence of B. burgdorferi may be responsible for manifestations of chronic Lyme disease symptoms.

False chronic Lyme disease diagnoses are frequently justified due to non-specific symptoms that are common in the population. Harriet Hall examined a long list of symptoms attributed to CLD and remarked that it "pretty much covers everyone." Consistent with this observation, a study found that a questionnaire of non-specific symptoms based on an ILADS symptom checklist could not distinguish between patients with possible post-Lyme symptoms and those with other conditions.{{cite journal |last1=Zomer |first1=T.P. |last2=Barendregt |first2=J.N.M. |last3=van Kooten |first3=B. |last4=van Bemmel |first4=T. |last5=Landman |first5=G.W. |last6=van Hees |first6=B.C. |last7=Vermeeren |first7=Y.M. |title=Non-specific symptoms in adult patients referred to a Lyme centre |journal=Clinical Microbiology and Infection |date=January 2019 |volume=25 |issue=1 |pages=67–70 |doi=10.1016/j.cmi.2018.09.016|pmid=30287411 |display-authors=1|doi-access=free}}

While many people who receive CLD diagnoses have unexplained symptoms (including chronic fatigue and fibromyalgia), others have well-defined diagnoses. Cases of cancer, a brain tumor, ALS, lupus, multiple sclerosis, a thyroid disorder, and mental disorders have each been misdiagnosed as CLD.{{cite news |last1=Boodman |first1=Sandra |title=Her unexplained jitteriness and weight loss were telling clues |url=https://www.washingtonpost.com/health/medical-mysteries/medical-mystery-weight-loss-jittery/2021/10/15/3020e3ce-0109-11ec-a664-4f6de3e17ff0_story.html |newspaper=Washington Post |date=16 October 2021 |archive-date=24 March 2023 |access-date=7 June 2023 |archive-url=https://web.archive.org/web/20230324170746/https://www.washingtonpost.com/health/medical-mysteries/medical-mystery-weight-loss-jittery/2021/10/15/3020e3ce-0109-11ec-a664-4f6de3e17ff0_story.html |url-status=live }}{{cite journal |last1=Itani |first1=O. |last2=Haddad |first2=E. |last3=Pitron |first3=V. |last4=Pichon |first4=F. |last5=Caumes |first5=E. |title=Focus on patients receiving long-term antimicrobial treatments for lyme borreliosis: No lyme but mostly mental disorders |journal=Infectious Diseases Now |date=May 2021 |volume=51 |issue=3 |pages=300–303 |doi=10.1016/j.medmal.2020.10.018|pmid=33098950 |doi-access=free}}{{cite journal |last1=Cheema |first1=Jasreen |last2=Huynh |first2=Aline-Claire |last3=Prat |first3=Sébastien S. |title=Multiple Sclerosis and psychosis: A case report |journal=Multiple Sclerosis and Related Disorders |date=September 2019 |volume=34 |pages=158–161 |doi=10.1016/j.msard.2019.06.001|pmid=31302591 |s2cid=195478826 }}{{cite journal |last1=Strizova |first1=Zuzana |last2=Patek |first2=Ondrej |last3=Vitova |first3=Lenka |last4=Horackova |first4=Miroslava |last5=Bartunkova |first5=Jirina |title=Internet-based self-diagnosis of Lyme disease caused death in a young woman with systemic lupus erythematosus |journal=Joint Bone Spine |date=October 2019 |volume=86 |issue=5 |pages=650–651 |doi=10.1016/j.jbspin.2018.12.011|pmid=30660803 |s2cid=58654505 }}{{cite journal |last1=Nelson |first1=Christina |last2=Elmendorf |first2=Sarah |last3=Mead |first3=Paul |title=Neoplasms Misdiagnosed as "Chronic Lyme Disease" |journal=JAMA Internal Medicine |date=1 January 2015 |volume=175 |issue=1 |pages=132–133 |doi=10.1001/jamainternmed.2014.5426 |pmid=25365479 |doi-access=free|issn=2168-6106}}{{cite journal |last1=Marzec |first1=Natalie S. |last2=Nelson |first2=Christina |last3=Waldron |first3=Paul Ravi |last4=Blackburn |first4=Brian G. |last5=Hosain |first5=Syed |last6=Greenhow |first6=Tara |last7=Green |first7=Gary M. |last8=Lomen-Hoerth |first8=Catherine |last9=Golden |first9=Marjorie |last10=Mead |first10=Paul S. |title=Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease — United States |journal=MMWR. Morbidity and Mortality Weekly Report |date=16 June 2017 |volume=66 |issue=23 |pages=607–609 |display-authors=1|doi=10.15585/mmwr.mm6623a3|pmid=28617768 |pmc=5657841 |doi-access=free}} Scientists from the Centers for Disease Control and Prevention (CDC) also documented life-threatening infections caused by unnecessary treatment with intravenous antibiotics and immunoglobulins. An adolescent girl and a woman were hospitalized for septic shock, with the woman eventually dying. Other patients developed Staphylococcus aureus and intractable C. difficile.{{cite news |last1=Sun |first1=Lena |title=Dangerous unproven treatments for 'chronic Lyme disease' are on the rise |url=https://www.washingtonpost.com/news/to-your-health/wp/2017/06/15/dangerous-unproven-treatments-for-chronic-lyme-disease-cause-are-on-the-rise/ |newspaper=Washington Post |date=26 October 2021 |archive-date=26 February 2023 |access-date=7 June 2023 |archive-url=https://web.archive.org/web/20230226150408/https://www.washingtonpost.com/news/to-your-health/wp/2017/06/15/dangerous-unproven-treatments-for-chronic-lyme-disease-cause-are-on-the-rise/ |url-status=live }}

Among people who self-identify as having chronic Lyme, the idea of chronic Lyme functions as a type of social identity. In this sense, the goal of the label is not to identify particular objective facts that differentiate one medical condition from another; instead, the main goal is to validate the real suffering experienced by people living with an invisible illness and to provide social support for them as they cope with it.{{Cite web|url=https://www.thecut.com/2019/07/what-happens-when-lyme-disease-becomes-an-identity.html|title=What Happens When Lyme Disease Becomes an Identity?|last=Fischer|first=Molly|date=2019-07-24|website=The Cut|language=en|access-date=2019-07-30|quote=For this community of patients, Lyme has come to function as something more expansive than a diagnosis. While Lyme disease is a specific medical condition—one that may manifest more severely or less, be treated more easily or less—chronic Lyme is something else altogether. (The medical establishment generally avoids using the term chronic Lyme, and because of this establishment wariness, advocates who believe Lyme is a chronic infection now sometimes advise patients to avoid it too.) This version of Lyme has no consistent symptoms, no fixed criteria, and no accurate test. This Lyme is a kind of identity. Lyme is a label for a state of being, a word that conveys your understanding of your lived experience. Lyme provides the language to articulate that experience and join with others who share it. In the world of chronic Lyme, doctors are trustworthy (or not) based on their willingness to treat Lyme. Tests are trustworthy (or not) based on their ability to confirm Lyme. Lyme is the fundamental fact, and you work backward from there. Lyme is a community with a cause: the recognition of its sufferers' suffering—and, with it, the recognition of Lyme.|archive-date=2019-07-27|archive-url=https://web.archive.org/web/20190727215306/https://www.thecut.com/2019/07/what-happens-when-lyme-disease-becomes-an-identity.html|url-status=live}} To some patients, receiving a CLD diagnosis can provide a sense of relief and optimism for the future.{{cite journal |last1=Forestier |first1=E. |last2=Gonnet |first2=F. |last3=Revil-Signorat |first3=A. |last4=Zipper |first4=A.C. |title=Cheminement diagnostique et vécu des patients se pensant atteints de " maladie de Lyme chronique " |journal=La Revue de Médecine Interne |date=December 2018 |volume=39 |issue=12 |pages=912–917 |doi=10.1016/j.revmed.2018.04.002 |pmid=29706237 |s2cid=23511758 |trans-title=Pathway to diagnosis and real-life experience of patients believing they are affected by "chronic Lyme disease" |language=French}} They may also become dedicated to fighting for recognition of CLD.

Patients who receive a false chronic Lyme diagnosis are frequently told that they have other diagnoses that are not scientifically recognized.{{Cite web|url=https://www.thecut.com/2019/07/what-happens-when-lyme-disease-becomes-an-identity.html|title=What Happens When Lyme Disease Becomes an Identity?|last=Fischer|first=Molly|date=2019-07-24|website=The Cut|language=en}} Infections may be diagnosed even without compatible symptom history, exposure in an endemic area, or credible positive test results. Some inappropriately diagnosed "co-infections" may be based on known tick-borne infections, such as Babesiosis or anaplasmosis. Others, like bartonellosis or mycoplasmosis, have not been shown to be tick-borne or commonly comorbid with chronic Lyme disease.{{cite journal |last1=Lantos |first1=Paul M. |last2=Wormser |first2=Gary P. |title=Chronic Coinfections in Patients Diagnosed with Chronic Lyme Disease: A Systematic Review |journal=The American Journal of Medicine |date=November 2014 |volume=127 |issue=11 |pages=1105–1110 |doi=10.1016/j.amjmed.2014.05.036 |pmid=24929022 |pmc=4252587}}{{cite web |title=Lyme disease FAQ |url=https://www.cdc.gov/lyme/faq/index.html |website=Centers for Disease Control and Prevention |access-date=6 June 2023 |language=en-us |date=13 June 2022 |archive-date=26 March 2013 |archive-url=https://web.archive.org/web/20130326120941/http://www.cdc.gov/lyme/faq/index.html |url-status=live }} Some may be told that they are being poisoned by mold. NIH physician Adriana Marques has noted that patients may also be told that they have "metabolic and hormonal imbalances, immune dysfunction, heavy metal toxicity, allergies, damage by toxins, mitochondrial dysfunction and enzyme deficiencies".{{cite book |last1=Marques |first1=Adriana |editor1-last=Halperin |editor1-first=John |title=Lyme disease: an evidence-based approach |date=2018 |publisher=CABI |location=Wallingford Boston, MA |isbn=978-1786392077 |pages=247–274 |edition=2nd |chapter=Chronic Lyme Disease}}

CLD advocates have also attempted to link Lyme disease to so-called Morgellons disease, another condition unrecognized by medical science.{{cite news |url= https://www.theatlantic.com/health/archive/2015/01/diagnosis-or-delusion/384206/ |title= Diagnosis or Delusion? |work= The Atlantic |date= January 18, 2015 |author= Foley K |archive-date= June 3, 2023 |access-date= June 7, 2023 |archive-url= https://web.archive.org/web/20230603120035/https://www.theatlantic.com/health/archive/2015/01/diagnosis-or-delusion/384206/ |url-status= live }} Morgellons—which is generally considered a form of delusional parasitosis—involves a persistent and pathologic belief that the skin is producing fibers. Among the top promoters of Morgellons is former ILADS president Raphael Stricker, who claims that CLD is causing the fibers to grow.{{cite journal |vauthors=Beuerlein KG, Balogh EA, Feldman SR |title=Morgellons disease etiology and therapeutic approach: a systematic review |journal=Dermatol Online J |volume=27 |issue=8 |pages= |date=August 2021 |pmid=34755952 |doi=10.5070/D327854682 |s2cid=243939325 |url=https://escholarship.org/content/qt2md8r5ms/qt2md8r5ms.pdf |archive-date=2023-05-22 |access-date=2023-06-07 |archive-url=https://web.archive.org/web/20230522231316/https://escholarship.org/content/qt2md8r5ms/qt2md8r5ms.pdf |url-status=live }} In 2015, The Atlantic reported that Stricker treats people who believe they have Morgellons with long-term antibiotics.

A belief in one’s chronic Lyme disease is often reinforced by fallacious reasoning.{{cite web |last1=Novella |first1=Steven |title=Jarisch–Herxheimer and Lyme disease|publisher=Science-based Medicine |url=https://sciencebasedmedicine.org/jarisch-herxheimer-and-lyme-disease/ |website=sciencebasedmedicine.org |access-date=6 June 2023 |date=25 October 2017}}{{cite news |last1=Wormser |first1=Gary |last2=Shapiro |first2=Eugene |title=The 'Chronic Lyme Disease' Label Isn't Helpful |url=https://www.nytimes.com/roomfordebate/2013/08/11/deconstructing-lyme-disease/the-chronic-lyme-disease-label-isnt-helpful |work=The New York Times |date=11 August 2013 |language=en |archive-date=6 June 2023 |access-date=6 June 2023 |archive-url=https://web.archive.org/web/20230606210315/https://www.nytimes.com/roomfordebate/2013/08/11/deconstructing-lyme-disease/the-chronic-lyme-disease-label-isnt-helpful |url-status=live }} For example, if a patient either feels better or feels worse after a treatment, it may be wrongly interpreted as evidence both that the diagnosis is appropriate and that the treatment is working. In the chronic Lyme world, a patient with worsening symptoms may be told that they are "herxing". The "herxing" claims are based on a real phenomenon called the Jarisch–Herxheimer reaction but often do not resemble it. True Jarisch–Herxheimer reactions are generally transient, mild, and found only within the first 24 hours of beginning antibiotics.{{cite journal |last1=Lantos |first1=Paul M |last2=Rumbaugh |first2=Jeffrey |last3=Bockenstedt |first3=Linda K |last4=Falck-Ytter |first4=Yngve T |last5=Aguero-Rosenfeld |first5=Maria E |last6=Auwaerter |first6=Paul G |last7=Baldwin |first7=Kelly |last8=Bannuru |first8=Raveendhara R |last9=Belani |first9=Kiran K |last10=Bowie |first10=William R |last11=Branda |first11=John A |last12=Clifford |first12=David B |last13=DiMario |first13=Francis J |last14=Halperin |first14=John J |last15=Krause |first15=Peter J |last16=Lavergne |first16=Valery |last17=Liang |first17=Matthew H |last18=Meissner |first18=H Cody |last19=Nigrovic |first19=Lise E |last20=Nocton |first20=James (Jay) J |last21=Osani |first21=Mikala C |last22=Pruitt |first22=Amy A |last23=Rips |first23=Jane |last24=Rosenfeld |first24=Lynda E |last25=Savoy |first25=Margot L |last26=Sood |first26=Sunil K |last27=Steere |first27=Allen C |last28=Strle |first28=Franc |last29=Sundel |first29=Robert |last30=Tsao |first30=Jean |last31=Vaysbrot |first31=Elizaveta E |last32=Wormser |first32=Gary P |last33=Zemel |first33=Lawrence S |title=Clinical Practice Guidelines by the Infectious Diseases Society of America (IDSA), American Academy of Neurology (AAN), and American College of Rheumatology (ACR): 2020 Guidelines for the Prevention, Diagnosis and Treatment of Lyme Disease |journal=Clinical Infectious Diseases |date=23 January 2021 |volume=72 |issue=1 |pages=e1–e48 |doi=10.1093/cid/ciaa1215|pmid=33417672 |display-authors=1|doi-access=free }} In online Lyme groups, patients have claimed to "herx" long after initial antibiotic treatment for durations that can last weeks. A mistaken belief that a treatment is working can cause patients to ignore serious drug side effects of antibiotics or prevent diagnosis and treatment of other true causes of worsening symptoms.

If a patient improves while on treatment, experts warn that this also should not be interpreted as evidence of Lyme infection and that the treatment is working. Randomized controlled trials found that close to 40% of people with post-Lyme symptoms felt better while on placebo. An assumption that a treatment works can be reinforced because antibiotics can have anti-inflammatory effects, and many conditions naturally improve over time.

While there is general agreement on the optimal treatment for Lyme disease, the existence of chronic Lyme is generally rejected because there is no evidence of its existence. Even among those who believe in it, there is no consensus over its prevalence, symptoms, diagnostic criteria, or treatment.[http://www.nejm.org/doi/full/10.1056/NEJMc1215615 Correspondence, "Reinfection versus Relapse in Lyme Disease"] {{Webarchive|url=https://web.archive.org/web/20131021035934/http://www.nejm.org/doi/full/10.1056/NEJMc1215615 |date=2013-10-21 }}, New England Journal of Medicine, March 14, 2013. (This exchange of three letters nicely illustrates the controversy and some of the issues at stake.) The evidence-based perspective is exemplified by a 2007 review in The New England Journal of Medicine, which noted the diagnosis of chronic Lyme disease is used by a few physicians despite a lack of "reproducible or convincing scientific evidence", leading the authors to describe this diagnosis as "the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections." Medical authorities agree with this viewpoint: the Infectious Diseases Society of America (IDSA), the American Academy of Neurology, CDC, and the National Institutes of Health (NIH), advise against long-term antibiotic treatment for people who identify as having chronic Lyme disease, given the lack of supporting evidence and the potential for harmful side-effects{{cite journal | doi = 10.1001/jama.2017.8897 | volume=318 | title=Deceptive Lyme Disease Diagnosis Linked With Serious Infections | year=2017 | journal=JAMA | issue=4 | page=324| pmid=28742918 }} including toxicities.{{cite web |publisher= National Institute of Allergy and Infectious Diseases |title= Chronic Lyme Disease |url= https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease |date= November 21, 2018 |access-date= 2019-12-05 |archive-date= 2019-12-01 |archive-url= https://web.archive.org/web/20191201112016/https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease |url-status= live }}

A minority, primarily not medical practitioners, holds that chronic Lyme disease is responsible for a range of unexplained symptoms, sometimes in people without any evidence of past infection.{{cite journal |author=Ballantyne C |title=The chronic debate over Lyme disease|journal=Nat. Med. |volume=14 |issue=11 |pages=1135–39 |date=November 2008 |pmid=18989271 |doi=10.1038/nm1108-1135|s2cid=36510820}} This viewpoint is promoted by many who have been told they have the condition by people who lack experience in science or medicine. Groups, advocates, and the small number of physicians who support the concept of chronic Lyme disease have organized to lobby for recognition of this diagnosis, as well as to argue for insurance coverage of long-term antibiotic therapy, which most insurers deny, as it is at odds with the guidelines of major medical organizations.{{cite news |author = Whelan, David |url = https://www.forbes.com/forbes/2007/0312/096.html |title = Lyme Inc |work = Forbes |date = 2007-03-12 |access-date = 2008-06-24 |archive-date = 2019-10-26 |archive-url = https://web.archive.org/web/20191026181548/https://www.forbes.com/forbes/2007/0312/096.html |url-status = live }}

Paul G. Auwaerter, director of infectious disease at Johns Hopkins School of Medicine, cited the political controversy and high emotions as contributing to a "poisonous atmosphere" around Lyme disease, which he believes has led to doctors trying to avoid having Lyme patients in their practices.{{cite web|url=http://www.ama-assn.org/amednews/2008/06/09/hlsa0609.htm|title=Lyme treatment accord ends antitrust probe|author=Landers, Susan J|date=2008-06-09|work=American Medical News|archive-url=https://web.archive.org/web/20080611013743/http://www.ama-assn.org/amednews/2008/06/09/hlsa0609.htm|archive-date=11 June 2008|access-date=2008-06-24}}

In 2006, Richard Blumenthal, the Connecticut Attorney General, opened an antitrust investigation against the IDSA, accusing the IDSA Lyme disease panel of undisclosed conflicts of interest and of unduly dismissing alternative therapies and chronic Lyme disease. The investigation was closed on May 1, 2008, without charges when the IDSA agreed to submit to a review of its guidelines by a panel of independent scientists and physicians which would occur on July 30, 2009, citing mounting legal costs and the difficulty of presenting scientific arguments in a legal setting.{{cite journal |author=Klein JO |title=Danger ahead: politics intrude in Infectious Diseases Society of America guideline for Lyme disease |journal=Clin. Infect. Dis. |volume=47 |issue=9 |pages=1197–99 |date=November 2008 |pmid=18821849 |doi=10.1086/592247 |doi-access=free }}

According to the agreement with Blumenthal, the IDSA Lyme disease guidelines remained in place and unchallenged.{{cite press release | url = http://www.idsociety.org/Templates/nonavigation.aspx?pageid=32212256693 | title = Agreement Ends Lyme Disease Investigation By Connecticut Attorney General: Medical Validity of IDSA Guidelines Not Challenged | publisher = Infectious Diseases Society of America | date = 2008-05-01 | access-date = 2017-05-19 | archive-url = https://web.archive.org/web/20180119175423/http://www.idsociety.org/Templates/nonavigation.aspx?pageid=32212256693 | archive-date = 2018-01-19 | url-status = dead }} A Forbes piece described Blumenthal's investigation as "intimidation" of scientists by an elected official with close ties to Lyme advocacy groups. The Journal of the American Medical Association described the decision as an example of the "politicization of health policy" that went against the weight of scientific evidence and may have a chilling effect on future decisions by medical associations.{{cite journal |vauthors=Kraemer JD, Gostin LO |title=Science, politics, and values: the politicization of professional practice guidelines |journal=JAMA |volume=301 |issue=6 |pages=665–67 |date=February 2009 |pmid=19211474 |doi=10.1001/jama.301.6.665}}

The expert panel's review was published in 2010, with the independent doctors and scientists in the panel unanimously endorsing the guidelines, stating "No changes or revisions to the 2006 Lyme guidelines are necessary at this time", and concluding long-term antibiotic treatments are unproven and potentially dangerous.{{cite news|url=http://www.nbcnews.com/id/36721207/ns/health-infectious_diseases/|archive-url=https://web.archive.org/web/20150604022218/http://www.nbcnews.com/id/36721207/ns/health-infectious_diseases/|url-status=dead|archive-date=June 4, 2015|title=No changes to Lyme disease treatment |first=Stephen |last=Singer |agency=Associated Press |date=2010-04-22}} The IDSA welcomed the final report, stating that "Our number one concern is the patients we treat, and we're glad patients and their physicians now have additional reassurance that the guidelines are medically sound."[http://www.idsociety.org/Lyme_Review_Panel_News_Release/ Special Review Panel Unanimously Upholds Lyme Disease Treatment Guidelines: Short-term Antibiotics Proven to be Best Treatment for Patients] {{Webarchive|url=https://web.archive.org/web/20140222131457/http://www.idsociety.org/Lyme_Review_Panel_News_Release/ |date=2014-02-22 }} Infectious Diseases Society of America. April 22, 2010.

The state of Connecticut, meanwhile, enacted a law on June 18, 2009, "to allow a licensed physician to prescribe, administer or dispense long-term antibiotics for a therapeutic purpose to a patient clinically diagnosed with Lyme disease."{{cite web |url=https://www.cga.ct.gov/2009/ACT/PA/2009PA-00128-R00HB-06200-PA.htm |title=An act concerning the use of long-term antibiotics for the treatment of Lyme disease |work=Connecticut General Assembly |date=2009-06-18 |access-date=2019-12-05 |archive-date=2019-12-05 |archive-url=https://web.archive.org/web/20191205205543/https://www.cga.ct.gov/2009/ACT/PA/2009PA-00128-R00HB-06200-PA.htm |url-status=live }} The states of Rhode Island,{{cite web | url=http://www.health.state.ri.us/disease/communicable/lyme/law.php | title = Lyme Disease and the Law | work = Rhode Island Department of Health | year = 2009 | access-date = 2009-07-05 |archive-url = https://web.archive.org/web/20050502203519/http://www.health.state.ri.us/disease/communicable/lyme/law.php |archive-date = May 2, 2005}} California, Massachusetts,{{Cite news |last=Rathke |first=Lisa |date=July 12, 2014 |title=New Vt. law aims to aid in treatment of Lyme disease as cases soar |url=http://www.providencejournal.com/article/20140712/NEWS/307129986 |work=The Providence Journal |access-date=28 July 2019 |archive-date=10 March 2018 |archive-url=https://web.archive.org/web/20180310082715/http://www.providencejournal.com/article/20140712/NEWS/307129986 |url-status=live }} New Hampshire, Vermont, New York,{{cite web|url=http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/12/18/cuomo-signs-lyme-disease-bill/20576915/|title=Cuomo signs bill safeguarding Lyme treatments|author=John Ferro|date=18 December 2014|work=The Poughkeepsie Journal|access-date=29 August 2015|archive-date=10 September 2015|archive-url=https://web.archive.org/web/20150910224341/http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/12/18/cuomo-signs-lyme-disease-bill/20576915/|url-status=live}} Maine,{{cite web|url=http://www.pressherald.com/2015/06/29/maine-legislature-clears-way-for-long-term-lyme-disease-treatment/|title=Maine Legislature clears way for long-term Lyme disease treatment|work=The Portland Press Herald / Maine Sunday Telegram|access-date=29 August 2015|date=2015-06-29|archive-date=2015-09-01|archive-url=https://web.archive.org/web/20150901154819/http://www.pressherald.com/2015/06/29/maine-legislature-clears-way-for-long-term-lyme-disease-treatment/|url-status=live}} and Iowa{{cite web |title=Iowa Code 2021, Section 147.56 |url=https://www.legis.iowa.gov/docs/code/2021/147.56.pdf |access-date=14 December 2021 |archive-date=14 December 2021 |archive-url=https://web.archive.org/web/20211214060555/https://www.legis.iowa.gov/docs/code/2021/147.56.pdf |url-status=live }} have similar laws.

Massachusetts (2016){{cite web|url=http://www.wbur.org/morningedition/2016/08/01/legislative-session-ends|title=Mad Rush On Beacon Hill Sends 4 Key Bills To Baker's Desk As Legislative Session Ends|publisher=Morning Edition – WBUR|website=wbur.org|first=Steve|last=Brown|date=1 August 2016|access-date=24 September 2016}} and Rhode Island (2003){{cite web|url=http://webserver.rilin.state.ri.us/PublicLaws/law03/law03113.htm|title=Chapter 113|publisher=webserver.rilin.state.ri.us|access-date=24 September 2016|archive-date=7 September 2016|archive-url=https://web.archive.org/web/20160907050437/http://webserver.rilin.state.ri.us/PublicLaws/law03/law03113.htm|url-status=live}} have laws mandating insurance coverage for long-term antibiotic therapy for Lyme disease when deemed medically necessary by a physician. In 1999 Connecticut had passed a similar, though somewhat more restrictive law.{{cite web|url=https://www.cga.ct.gov/2015/pub/chap_700c.htm#sec_38a-518h|title=Chapter 700c Health Insurance|work=ct.gov|access-date=29 August 2015|archive-url=https://web.archive.org/web/20151010223625/https://www.cga.ct.gov/2015/pub/chap_700c.htm#sec_38a-518h|archive-date=10 October 2015|url-status=dead}}

Some promoters of belief in CLD have harassed mainstream scientists and made false accusations.{{cite news |last1=Haelle |first1=Tara |title=Judge Dismisses Lyme Disease Lawsuit Against IDSA, Doctors |url=https://www.medscape.com/viewarticle/961484 |access-date=4 February 2025 |work=Medscape |date=25 October 2021 |language=en}}{{cite journal |last1=Auwaerter |first1=Paul G |last2=Bakken |first2=Johan S |last3=Dattwyler |first3=Raymond J |last4=Dumler |first4=J Stephen |last5=Halperin |first5=John J |last6=McSweegan |first6=Edward |last7=Nadelman |first7=Robert B |last8=O'Connell |first8=Susan |last9=Shapiro |first9=Eugene D |last10=Sood |first10=Sunil K |last11=Steere |first11=Allen C |last12=Weinstein |first12=Arthur |last13=Wormser |first13=Gary P |title=Antiscience and ethical concerns associated with advocacy of Lyme disease |journal=The Lancet Infectious Diseases |date=September 2011 |volume=11 |issue=9 |pages=713–719 |doi=10.1016/S1473-3099(11)70034-2 |pmc=4489928}} In 2001, The New York Times Magazine reported that Allen Steere, chief of immunology and rheumatology at Tufts Medical Center and a co-discoverer and leading expert on Lyme disease, had been harassed, stalked, and threatened by patients and patient advocacy groups angry at his refusal to substantiate their diagnoses of "chronic" Lyme disease and endorse long-term antibiotic therapy.{{cite news|author=Grann, David |url=https://www.nytimes.com/2001/06/17/magazine/17LYMEDISEASE.html |archive-url=https://web.archive.org/web/20090802114123/https://www.nytimes.com/2001/06/17/magazine/17LYMEDISEASE.html|archive-date=2 August 2009|title=Stalking Dr. Steere Over Lyme Disease |work = The New York Times Magazine |date = 2001-06-17 |access-date = 2008-06-25}} Because this intimidation included death threats, Steere was assigned security guards.{{cite journal |author=Abbott A |title=Lyme disease: uphill struggle |journal=Nature |volume=439 |issue=7076 |pages=524–25 |date=February 2006 |pmid=16452949 |doi=10.1038/439524a|s2cid=4315588 |doi-access=free }}

A 2004 study in The Pediatric Infectious Disease Journal stated nine of nineteen Internet websites surveyed contained what were described as major inaccuracies. Websites described as providing inaccurate information included several with the word "lyme" in their domain name (e.g., lymenet.org), as well as the website of the International Lyme and Associated Diseases Society.{{cite journal | last1 = Cooper | first1 = JD Jr. | last2 = Feder | first2 = HM | title=Inaccurate information about lyme disease on the internet | journal=Pediatr Infect Dis J | volume=23 | issue=12 | pages=11050–58 |date=December 2004 | pmid=15626946 | doi=10.1097/01.inf.0000145411.57449.f3}} A 2007 article in The New England Journal of Medicine argued media coverage of chronic Lyme disease ignored scientific evidence in favor of anecdotes and testimonials:

{{blockquote|The media frequently disregard complex scientific data in favor of testimonials about patients suffering from purported chronic Lyme disease and may even question the competence of clinicians who are reluctant to diagnose chronic Lyme disease ... [contributing] to a great deal of public confusion with little appreciation of the serious harm caused to many patients who have received a misdiagnosis and have been inappropriately treated.}}

The 2008 documentary film Under Our Skin: The Untold Story of Lyme Disease[https://www.washingtonpost.com/wp-dyn/content/article/2008/06/13/AR2008061303246_pf.html "Film Focuses on Lyme Patients"] {{Webarchive|url=https://web.archive.org/web/20171213010441/http://www.washingtonpost.com/wp-dyn/content/article/2008/06/13/AR2008061303246_pf.html |date=2017-12-13 }}. The Washington Post. June 17, 2008. Retrieved September 12, 2008. is by a director whose sister self-identified with the condition.{{cite news | work = The New York Times | title = Ticked Off | first = Stephen | last = Holden | access-date = 2017-06-28 | date = 2009-06-19 | url = http://movies.nytimes.com/2009/06/19/movies/19under.html | archive-date = 2012-02-14 | archive-url = https://web.archive.org/web/20120214010212/http://movies.nytimes.com/2009/06/19/movies/19under.html | url-status = live }} A columnist for Entertainment Weekly wrote of the film:

{{blockquote|[Under Our Skin] embraces, with bits and pieces of skimpy evidence and a whole lot more paranoid leftist fervor, the notion that "chronic Lyme disease" is a condition that the medical establishment is locked in a conspiracy to deny the existence of. The filmmakers actually bungle what should have been their real subject (that the belief in chronic Lyme disease has become something of a cult, one that can ruin the lives of the people who think they have it).{{cite magazine |last1=Gleiberman |first1=Owen |date=20 November 2009 |title=Oscar documentary scandal: The real reason that too many good movies got left out |url=http://ew.com/article/2009/11/20/oscar-documentary-scandal/ |magazine=Entertainment Weekly |access-date=19 December 2017}}}}

• List of diagnoses characterized as pseudoscience

{{Reflist}}

• {{Skeptoid | id= 4718| number= 718| title= Diagnosing Chronic Lyme Disease| date= March 10, 2020| access-date=}}

Category:Medical controversies

Category:Alternative diagnoses

Category:Health fraud