Chronic Lyme disease: Difference between revisions

{{short description|Belief that symptoms are caused by an unproven infection}}

|legality = Some jurisdictions have legislated to protect doctors offering worthless and potentially dangerous treatments

'''Chronic Lyme disease''' ('''CLD''') is the name used by some people with "a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to ''[[Borrelia burgdorferi]]'' infection" to describe their condition and their beliefs about its cause.<ref name="nejm-feder"/> <ref name=nejm-feder/><ref name=ct/> Chronic Lyme disease a known medical disorder caused by infection with ''Borrelia burgdorferi'', or with [[post-treatment Lyme disease syndrome]], a set of lingering symptoms which may persist after successful treatment of infection with Lyme bacteria.

Despite numerous studies, there is no evidence that symptoms associated with CLD are caused by any persistent infection.<ref>{{cite journal|last1=Baker|first1=P. J.|title=Chronic Lyme disease: in defense of the scientific enterprise|journal=The FASEB Journal|date=14 July 2010|volume=24|issue=11|pages=4175–77|doi=10.1096/fj.10-167247|pmid=20631327|s2cid=36141950}}</ref> The symptoms attributed to chronic Lyme are [[Non-specific symptom|generic and non-specific symptoms]], such as fatigue and muscle pain, and in many cases are likely due to [[fibromyalgia]] or [[chronic fatigue syndrome]].<ref name="FMWars" /><ref name="SMB-Hall">{{Cite web |url=https://sciencebasedmedicine.org/does-everybody-have-chronic-lyme-disease-does-anyone/ |title=Does Everybody Have Chronic Lyme Disease? Does Anyone? |last=Hall |first=Harriet |author-link=Harriet Hall |website=[[Science Based Medicine]]|date=2013-09-03 }}</ref> Fibromyalgia can be triggered by an infection, and antibiotics are not a safe or effective treatment for post-infectious fibromyalgia.<ref name=":1">{{Cite journal|last1=Ranque-Garnier|first1=S.|last2=Eldin|first2=C.|last3=Sault|first3=C.|last4=Raoult|first4=D.|last5=Donnet|first5=A.|date=March 2019|title=Management of patients presenting with generalized musculoskeletal pain and a suspicion of Lyme disease|journal=Médecine et Maladies Infectieuses|volume=49|issue=2|pages=157–66|doi=10.1016/j.medmal.2019.01.008|issn=1769-6690|pmid=30765287|s2cid=73420955|url=https://hal-amu.archives-ouvertes.fr/hal-02262538/file/S0399077X1830698X.pdf}}</ref>

A number of [[alternative medicine|alternative health products]] are promoted for chronic Lyme disease,<ref name="Quackwatch-Tests">{{Cite web |url=https://www.quackwatch.org/01QuackeryRelatedTopics/lyme.html |title=Lyme Disease: Questionable Diagnosis and Treatment |last=McSweegan |first=Edward |website=[[Quackwatch]]|date=28 June 2017 }}</ref> of which possibly the most controversial and harmful is long-term [[antibiotic]] therapy, particularly intravenous antibiotics.<ref name=lantos>{{cite journal |vauthors=Lantos PM |title=Chronic Lyme disease |journal=Infect. Dis. Clin. North Am. |volume=29 |issue=2 |pages=325–40 |date=June 2015 |pmid=25999227 |pmc=4477530 |doi=10.1016/j.idc.2015.02.006 |type=Review}}</ref><ref name="Forbes-LTA">{{Cite magazine |last=Salzberg |first=Steven |author-link=Steven Salzberg |date=2016-04-04 |title=Long-Term Antibiotic Use For Lyme Disease Doesn't Work, Study Finds |url=https://www.forbes.com/sites/stevensalzberg/2016/04/04/long-term-antibiotic-use-for-lyme-disease-doesnt-work-study-finds/#78bd5c3e28b1 |magazine=Forbes}}</ref> Recognised authorities advise against long-term antibiotic treatment for Lyme disease, even where some symptoms persist post-treatment.<ref name="idsa guideline"/><ref name="pmid17522387"/><ref name="nih-cld"/> Following disciplinary proceedings by state medical licensing boards in the United States, a subculture of "Lyme literate" physicians has successfully lobbied for specific legal protections, exempting them from the [[standard of care]] and [[Infectious Diseases Society of America]] treatment guidelines. Such legislation has been criticised as an example of "legislative alchemy", the process whereby pseudomedicine is legislated into practice.<ref name="SBM-Bellamy">{{Cite web |url=https://sciencebasedmedicine.org/legislative-alchemy-2014-so-far/ |title=Legislative Alchemy 2014 (so far) |last=Bellamy |first=Jann |website=[[Science Based Medicine]]|date=2014-05-15 }}</ref><ref name="Mason">{{Cite book |title=Policy & Politics in Nursing and Health Care |vauthors=Mason DJ, Leavitt JK, Chaffee MW |publisher=Elsevier Health Sciences |year=2014 |isbn=978-0323316064 |pages=310–11}}</ref><ref name="The-Scientist">{{Cite magazine |last=Warner |first=Susan |date=2007-02-07 |title=State official subpoenas infectious disease group |url=http://www.the-scientist.com/?articles.view/articleNo/24742/title/State-official-subpoenas-infectious-disease-group/ |magazine=The Scientist |publication-date=2007-02-07}}</ref>

''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 the post-treatment Lyme disease syndrome (PTLDS), when symptoms linger after standard antibiotic treatments.<ref name=cdc_postlds>{{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}}</ref><ref name="Cairns">{{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}}</ref> PTLDS is estimated to occur in less than 5% of people who had Lyme disease and were treated.<ref>{{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}}</ref> In contrast to these recognized medical conditions, the promotion of ''chronic'' lyme disease is a quintessential example of [[health fraud]].<ref name=ct>{{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/}}</ref> 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.<ref name="nejm-feder">{{cite journal | title = A Critical Appraisal of "Chronic Lyme Disease" | journal = [[The New England Journal of Medicine|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 }}</ref><ref name=IDSA_FAQ>{{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}}</ref>

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]].<ref name=FMWars>{{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 }}</ref><ref name=":1" /> Fibromyalgia can be triggered by an infection, and then persist when the infection is completely removed from the body.<ref name=":1" /> A few doctors attribute these symptoms to persistent infection with ''Borrelia'', or co-infections with other tick-borne pathogens, such as ''[[Ehrlichia]]'' and ''[[Babesia]]''.<ref name="gaito">{{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}}</ref><ref name=IDSAReviewPanel>{{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 }}</ref><ref name="cameron">{{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}}</ref> Some conclude that the initial infection may cause an [[autoimmunity|autoimmune reaction]] that continues to cause serious symptoms even after the bacteria have been eliminated by antibiotics.<ref name=Ercolini>{{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}}</ref>

A [[literature review|review]] looked at several animal studies that found 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 considered adequately 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."<ref name=Wormser2009>{{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 }}</ref>

Major US 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.<ref name="nejm-feder"/><ref name="idsa guideline">{{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}}</ref><ref name="pmid17522387">{{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 }}</ref><ref name="nih-cld"/> Prolonged antibiotic therapy presents significant risks and can have dangerous, even deadly, side effects.<ref name="mandell_chap242">{{cite book|editor-last=Dolin|editor-first=Gerald L Mandell, John E Bennett, 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}}</ref> 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.<ref name="Marques">{{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}}</ref> Many people who believe that they have chronic Lyme have fibromyalgia.<ref name="FMWars" /><ref name=":1" /> Fibromyalgia can be difficult to treat, and antibiotics do not work at all for fibromyalgia.<ref name=":1" /> A [[pressure group]] called the [[International Lyme and Associated Diseases Society]] (ILADS)<ref name=Tonks>{{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}}</ref> says that the persistence of ''B. burgdorferi'' may be responsible for manifestations of chronic Lyme disease symptoms.