Chronic Lyme disease

Last updated

Chronic Lyme disease
Pseudomedical diagnosis
Risks Nocebo
Treatment risks Dangers of long-term antibiotic therapy, delaying appropriate care [1]
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 non-specific symptoms, such as fatigue, muscle pain, and cognitive dysfunction to refer to their condition, even if there is no evidence that they had Lyme disease. [2] [3] Both the label and the belief that these people's symptoms are caused by this particular infection are generally rejected by medical professionals. [2] Chronic Lyme disease is distinct from post-treatment Lyme disease syndrome, a set of lingering symptoms which may persist after successful antibiotic treatment of infection with Lyme-causing Borrelia bacteria, and which may have similar symptoms to CLD. [3]

Contents

Despite numerous studies, there is no evidence that symptoms associated with CLD are caused by any persistent infection. [4] The symptoms attributed to chronic Lyme are in many cases likely due to fibromyalgia or chronic fatigue syndrome. [5] [6] Fibromyalgia can be triggered by an infection, and antibiotics are not a safe or effective treatment for post-infectious fibromyalgia. [7] Fatigue, joint and muscle pain are also experienced by a minority of people following antibiotic treatment for Lyme disease. [3]

A number of alternative health products are promoted for chronic Lyme disease, [8] of which possibly the most controversial and harmful is long-term antibiotic therapy, particularly intravenous antibiotics. [9] [10] Recognised authorities advise against long-term antibiotic treatment for Lyme disease, even where some symptoms persist post-treatment. [11] [12] [13] 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 science-based treatment guidelines. Such legislation has been criticised as an example of "legislative alchemy", the process whereby pseudomedicine is legislated into practice. [14] [15] [16] Some doctors view the promotion of chronic Lyme disease as an example of health fraud. [17]

Description and background

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. [18] [19] PTLDS is estimated to occur in less than 5% of people who had Lyme disease and were treated. [20] In contrast to these recognized medical conditions, the promotion of chronic lyme disease has been accused of being health fraud. [17] 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. [2] [21]

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. [5] [7] Fibromyalgia can be triggered by an infection, and then persist when the infection is completely removed from the body. [7] A few doctors attribute these symptoms to persistent infection with Borrelia, or co-infections with other tick-borne pathogens, such as Ehrlichia and Babesia . [22] [23] [24] 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. [25]

A 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." [26]

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. [2] [11] [12] [13] Prolonged antibiotic therapy presents significant risks and can have dangerous, even deadly, side effects. [27] 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. [28] Many people who believe that they have chronic Lyme have fibromyalgia. [5] [7] Fibromyalgia can be difficult to treat, and antibiotics do not work at all for fibromyalgia. [7] A pressure group called the International Lyme and Associated Diseases Society (ILADS) [29] 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. [2] Harriet Hall examined a long list of symptoms attributed to CLD and remarked that it "pretty much covers everyone." [6] 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. [30]

While many people who receive CLD diagnoses have unexplained symptoms (including chronic fatigue and fibromyalgia), others have well-defined diagnoses. [2] Cases of cancer, a brain tumor, ALS, lupus, multiple sclerosis, a thyroid disorder, and mental disorders have each been misdiagnosed as CLD. [31] [32] [33] [34] [35] [36] Scientists from the Centers for Disease Control and Prevention (CDC) also documented life-threatening infections caused by unnecessary treatment with intravenous antibiotics and immunoglobulins. [36] [37] 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. [36] [37]

Identity

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. [38] To some patients, receiving a CLD diagnosis can provide a sense of relief and optimism for the future. [39] They may also become dedicated to fighting for recognition of CLD. [39] [38]

Discredited beliefs

Patients who receive a false chronic Lyme diagnosis are frequently told that they have other diagnoses that are not scientifically recognized. [40] [41] Infections may be diagnosed even without compatible symptom history, exposure in an endemic area, and credible positive test results. [40] Some inappropriately diagnosed "co-infections" may be based on known tick-borne infections, such as Babesia or Anaplasma. [40] Others, like Bartonella or Mycoplasma, have not been shown to be tick-borne or a co-infection of Lyme disease. [40] [41] [1] [42] Some may be told that they are being poisoned by mold. [41] NIH doctor 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". [43]

CLD advocates have also attempted to link Lyme disease to Morgellons, another condition unrecognized by medical science. [44] Morgellons—which is generally considered a form of delusional parasitosis by mainstream doctors—involves a belief that fibers are being produced by the skin. [45] Among the top promoters of Morgellons is former ILADS president Raphael Stricker, who claims that CLD is causing the fibers to grow. [44] [45] In 2015, The Atlantic reported that Stricker treats people who believe they have Morgellons with long-term antibiotics. [44]

A belief in chronic Lyme disease is often reinforced based on fallacious reasoning. [46] [47] 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. [46] [47] In the chronic Lyme world, a patient with worsening symptoms may be told that they are "herxing". [41] [47] The "herxing" claims are based on a real phenomenon called a Jarisch–Herxheimer reaction, but often do not resemble it. [46] True Jarisch-Herxheimer reactions are generally transient, mild, and found only within the first 24 hours of beginning antibiotics. [48] [8] But in online Lyme groups, patients have claimed to "herx" long after initial antibiotic treatment for durations that can last weeks. [8] 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. [8] [46]

If a patient improves while on a treatment, experts warn that this also should not be interpreted as evidence of Lyme infection and that the treatment is working. [2] [48] Randomized controlled trials found that close to 40% of people with post-Lyme symptoms felt better while on placebo. [2] An assumption that a treatment is working can be reinforced because antibiotics can have anti-inflammatory effects and many conditions tend to naturally improve over time. [2]

Political actions

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. [29] [49] [50] Even among those who believe in it, there is no consensus over its prevalence, symptoms, diagnostic criteria, or treatment. [29] [49] [50] 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." [2] 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 [51] including toxicities. [11] [12] [13]

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. [49] This viewpoint is promoted by many who have been told they have the condition by people who lack experience in science or medicine. [29] 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. [49] [52]

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. [53]

IDSA lawsuit

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, [53] citing mounting legal costs and the difficulty of presenting scientific arguments in a legal setting. [54]

According to the agreement with Blumenthal, the IDSA Lyme disease guidelines remained in place and unchallenged. [55] A Forbes piece described Blumenthal's investigation as "intimidation" of scientists by an elected official with close ties to Lyme advocacy groups. [52] 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. [56]

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. [57] 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." [58]

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." [59] The states of Rhode Island, [60] California, [61] Massachusetts, [61] New Hampshire, [61] Vermont, [61] New York, [62] Maine, [63] and Iowa [64] have similar laws.

Massachusetts (2016) [65] and Rhode Island (2003) [66] have laws mandating insurance coverage for long-term antibiotic therapy for Lyme disease when deemed medically necessary by a physician. [66] In 1999 Connecticut had passed a similar, though somewhat more restrictive law. [67]

Harassment of researchers

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. [68] Because this intimidation included death threats, Steere was assigned security guards. [69]

Media

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. [70] 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:

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. [2]

The 2008 documentary film Under Our Skin: The Untold Story of Lyme Disease [71] is by a director whose sister self-identified with the condition. [72] A columnist for Entertainment Weekly wrote of the film:

[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). [73]

See also

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  36. 1 2 3 Marzec, Natalie S.; et al. (16 June 2017). "Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease — United States". MMWR. Morbidity and Mortality Weekly Report. 66 (23): 607–609. doi: 10.15585/mmwr.mm6623a3 . PMC   5657841 . PMID   28617768.
  37. 1 2 Sun, Lena (26 October 2021). "Dangerous unproven treatments for 'chronic Lyme disease' are on the rise". Washington Post.
  38. 1 2 Fischer, Molly (2019-07-24). "What Happens When Lyme Disease Becomes an Identity?". The Cut. Retrieved 2019-07-30. 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.
  39. 1 2 Forestier, E.; Gonnet, F.; Revil-Signorat, A.; Zipper, A.C. (December 2018). "Cheminement diagnostique et vécu des patients se pensant atteints de " maladie de Lyme chronique "" [Pathway to diagnosis and real-life experience of patients believing they are affected by "chronic Lyme disease"]. La Revue de Médecine Interne (in French). 39 (12): 912–917. doi:10.1016/j.revmed.2018.04.002. PMID   29706237. S2CID   23511758.
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  42. ↑ "Lyme disease FAQ". Centers for Disease Control and Prevention. 13 June 2022. Retrieved 6 June 2023.
  43. ↑ Marques, Adriana (2018). "Chronic Lyme Disease". In Halperin, John (ed.). Lyme disease: an evidence-based approach (2nd ed.). Wallingford Boston, MA: CABI. pp. 247–274. ISBN   978-1786392077.
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  48. 1 2 Lantos, Paul M; et al. (23 January 2021). "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". Clinical Infectious Diseases. 72 (1): e1–e48. doi: 10.1093/cid/ciaa1215 . PMID   33417672.
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  50. 1 2 Correspondence, "Reinfection versus Relapse in Lyme Disease", New England Journal of Medicine, March 14, 2013. (This exchange of three letters nicely illustrates the controversy and some of the issues at stake.)
  51. ↑ "Deceptive Lyme Disease Diagnosis Linked With Serious Infections". JAMA. 318 (4): 324. 2017. doi:10.1001/jama.2017.8897. PMID   28742918.
  52. 1 2 Whelan, David (2007-03-12). "Lyme Inc". Forbes . Retrieved 2008-06-24.
  53. 1 2 Landers, Susan J (2008-06-09). "Lyme treatment accord ends antitrust probe". American Medical News. Archived from the original on 11 June 2008. Retrieved 2008-06-24.
  54. ↑ Klein JO (November 2008). "Danger ahead: politics intrude in Infectious Diseases Society of America guideline for Lyme disease". Clin. Infect. Dis. 47 (9): 1197–99. doi: 10.1086/592247 . PMID   18821849.
  55. ↑ "Agreement Ends Lyme Disease Investigation By Connecticut Attorney General: Medical Validity of IDSA Guidelines Not Challenged" (Press release). Infectious Diseases Society of America. 2008-05-01. Archived from the original on 2018-01-19. Retrieved 2017-05-19.
  56. ↑ Kraemer JD, Gostin LO (February 2009). "Science, politics, and values: the politicization of professional practice guidelines". JAMA. 301 (6): 665–67. doi:10.1001/jama.301.6.665. PMID   19211474.
  57. ↑ Singer, Stephen (2010-04-22). "No changes to Lyme disease treatment". Associated Press.
  58. ↑ Special Review Panel Unanimously Upholds Lyme Disease Treatment Guidelines: Short-term Antibiotics Proven to be Best Treatment for Patients Infectious Diseases Society of America. April 22, 2010.
  59. ↑ "An act concerning the use of long-term antibiotics for the treatment of Lyme disease". Connecticut General Assembly. 2009-06-18. Retrieved 2019-12-05.
  60. ↑ "Lyme Disease and the Law". Rhode Island Department of Health. 2009. Archived from the original on May 2, 2005. Retrieved 2009-07-05.
  61. 1 2 3 4 Rathke, Lisa (July 12, 2014). "New Vt. law aims to aid in treatment of Lyme disease as cases soar". The Providence Journal . Retrieved 28 July 2019.
  62. ↑ John Ferro (18 December 2014). "Cuomo signs bill safeguarding Lyme treatments". The Poughkeepsie Journal . Retrieved 29 August 2015.
  63. ↑ "Maine Legislature clears way for long-term Lyme disease treatment". The Portland Press Herald / Maine Sunday Telegram . 2015-06-29. Retrieved 29 August 2015.
  64. ↑ "Iowa Code 2021, Section 147.56" (PDF). Retrieved 14 December 2021.
  65. ↑ Brown, Steve (1 August 2016). "Mad Rush On Beacon Hill Sends 4 Key Bills To Baker's Desk As Legislative Session Ends". wbur.org. Morning Edition – WBUR . Retrieved 24 September 2016.
  66. 1 2 "Chapter 113". webserver.rilin.state.ri.us. Retrieved 24 September 2016.
  67. ↑ "Chapter 700c Health Insurance". ct.gov. Archived from the original on 10 October 2015. Retrieved 29 August 2015.
  68. ↑ Grann, David (2001-06-17). "Stalking Dr. Steere Over Lyme Disease". The New York Times Magazine . Archived from the original on 2 August 2009. Retrieved 2008-06-25.
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  70. ↑ Cooper, JD Jr.; Feder, HM (December 2004). "Inaccurate information about lyme disease on the internet". Pediatr Infect Dis J. 23 (12): 11050–58. doi:10.1097/01.inf.0000145411.57449.f3. PMID   15626946.
  71. ↑ "Film Focuses on Lyme Patients". The Washington Post . June 17, 2008. Retrieved September 12, 2008.
  72. ↑ Holden, Stephen (2009-06-19). "Ticked Off". The New York Times. Retrieved 2017-06-28.
  73. ↑ Gleiberman, Owen (20 November 2009). "Oscar documentary scandal: The real reason that too many good movies got left out". Entertainment Weekly. Retrieved 19 December 2017.
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