Editor’s note – this article has been substantially updated and republished here. Please read and comment there. Thanks.
Lyme disease is an infectious disease caused by at least three species of bacteria belonging to the genus Borrelia. Of the three species, Borrelia burgdorferi is the main cause of Lyme disease in North America, whereas Borrelia afzelii and Borrelia garinii are more prevalent in Europe. The disease is named after the towns of Lyme and Old Lyme, Connecticut, where a number of cases were initially identified in 1975.
Borrelia is transmitted to humans when bitten by infected ticks belonging to a few species of the genus Ixodes, called “hard bodied” ticks. Although deer ticks, Ixodes scapularis, Ixodes pacificus, or Ixodes ricinus, are commonly considered to be the vectors for Borrelia infection, some of the other species in the Ixodes genus can transmit the disease. Lyme disease is the most common tick-borne disease in the United States.
The initial symptoms of Lyme disease include fever, headache, fatigue, depression, and a circular skin rash called erythema migrans (EM). If the Borrelia infection is not treated quickly, later symptoms may involve the joints, heart, and central nervous system. There is generally only one known treatment for the infection–antibiotics including doxycycline, amoxicillin, and cefuroxime. The symptoms usually disappear after antibiotic treatment.
From this rather straightforward disease, a whole cottage industry has arisen around the chronic Lyme disease myth – it claims that the Lyme disease is never really killed and it persists for months or years.
The Chronic Lyme disease myth
The problem with delayed or inadequate treatment of Lyme disease is that it can lead to the more serious symptoms, which can be disabling and difficult to treat. Difficult, but science-based medicine provides sufficient evidence that it can be successfully treated, especially with antibiotics.
And this is where the pseudoscience begins. There is a vocal group, the International Lyme And Associated Diseases Society, made up of patients, doctors and other advocates, that is pushing a belief that the Borrelia bacteria can hide out in the body and persist even after treatment, causing a vague list of symptoms, from night sweats and depression to back pain and vertigo. They call this disease, chronic Lyme disease (CLD).
This group, and others who share this belief, argue vehemently that a cure requires not weeks but months or years of strong antibiotics. And they also believe that the disease sometimes just goes into remission, with frequent relapses. On the ILAD website, they attempt to portray the disease as an almost impossible disease to treat:
The blogosphere is filled with stories, always anecdotal, about this chronic form of Lyme disease. In an article from a few years ago, Laurie McClellan described how her husband got ill from an unknown disease in 2009. She wrote:
McClellan also tells the story of a friend’s daughter:
Although this anecdote is compelling and seems like it indicates some serious disease, it is purely subjective. She’s not describing a diagnosis, just general complaints that can be indicative of many other disorders or diseases.
Using her own anecdotes and that infamous University of Google research, McClellan chose to accept a diagnosis of chronic Lyme disease for her husband, despite the lack of a positive diagnostic test.
Laurie McClellan is a science writer, so my expectations for her critical thinking skills is high, so why would she accept a diagnosis of chronic Lyme disease despite the evidence that it doesn’t exist? Why wouldn’t she consider alternative diagnoses that make more sense? Whatever the reason, the pull of the simplistic pseudoscience is too hard to resist, even for a science writer.
Refuting the chronic Lyme disease myth
According to an article in The Lancet by a group of infectious disease physicians from Johns Hopkins, who generally eschew pseudoscience, have stated that:
Here’s what we know. Almost all infectious disease researchers agree that the Borrelia bacteria causes Lyme disease and can stay in the body for years, if not treated correctly. However, nearly all of these researchers state that a short course of antibiotics is enough to wipe out the infection. There is absolutely no evidence that, in some mysterious way, Borrelia “hides” somewhere in the body to avoid the antibiotics. There is no evidence that Borrelia is antibiotic-resistant (especially since the reservoir for the bacteria is not humans, but other animals like rodents and deer).
The advocacy for CLD has been around for a few years, but there just is no peer-reviewed evidence in support of an epidemic of persistent yet invisible Lyme disease infections. One of the hallmarks of pseudoscience is the failure to progress towards additional evidence of its claims.
Furthermore, the internet has been flooded by false information about Lyme disease, and, by extension, the so-called chronic Lyme disease.
More science refuting the myth of CLD
However, it’s more than the fact that there is little science supporting the claims, we have solid evidence that refutes the claims regarding the existence of chronic Lyme disease. For example, the National Institute of Allergy and Infectious Diseases (NIAID) has funded three clinical trials that failed to show any benefit of long-term antibiotic therapy in individuals who have no evidence of an active Borrelia infection.
- Klempner et al. concluded that “there is considerable impairment of health-related quality of life among patients with persistent symptoms despite previous antibiotic treatment for acute Lyme disease. However, in these two trials, treatment with intravenous and oral antibiotics for 90 days did not improve symptoms more than placebo.
- Krupp et al. concluded that “this study does not support the use of additional antibiotic therapy with parenteral ceftriaxone in post-treatment, persistently fatigued patients with PLS (post-Lyme syndrome).”
- Fallon et al. published an article discussing research where chronic Lyme disease patients were treated for Lyme disease and presented with objective memory impairment tests. The group that received antibiotic therapy showed slightly greater improvement than the placebo group at 12 weeks, but at 24 weeks, both the antibiotic and placebo groups had similar improvement from the baseline results. However, because of the adverse effects of the IV antibiotic therapy, which afflicted about 26% of the antibiotic group, the authors concluded that because of the limited and minor improvement in cognitive function in combination with the adverse effects, the antibiotic therapy was not an “effective strategy for cognitive improvement in these patients and more durable and safer treatment strategies are still needed.”
Another study published in the New England Journal of Medicine found “that repeat episodes of erythema migrans (the typical rash) in appropriately treated patients were due to reinfection and not relapse.” They examined the genetic makeup of the bacteria found in these rashes to determine that they were new, not recurrent, infections. In other words, these particular patients, who had claimed to have a chronic Lyme disease probably were bitten by another tick.
In a review article, published in 2011, seven studies were conducted in endemic areas that included nearly 2,000 patients with suspected Lyme disease. It was determined that “only 7–31% had active Lyme disease and 5–20% had previous Lyme disease. Among the remainder, 50–88% had no evidence of ever having had Lyme disease.” These patients probably had alternative medical diagnoses like chronic fatigue syndrome or fibromyalgia.
In a recent review of research into Lyme disease (and again, chronic Lyme diseases), the author, Dr. Eugene Shapiro of the Departments of Pediatrics, Epidemiology of Microbial Diseases, and Investigative Medicine, Yale University Schools of Medicine and of Public Health, states:
Let me summarize what Dr. Shapiro wrote:
- The symptoms described by the CLD suffers are no different than general complaints made by the general population without Lyme disease.
- Because tests for Lyme disease can cause false positives (but rarely, false negatives), some people who are diagnosed with Lyme disease and treated for the disease, may not have an improvement in symptoms, because they never had the disease in the first place.
- There is so much misinformation for CLD on the internet, it may actually cause an increase in anxiety for patients leading to confounding of patient assessments post-treatment.
- Many individuals who complain that they have CLD actually have a reinfection of Lyme disease from a different strain of bacteria. They got another tick bite.
The CDC and chronic Lyme disease myths
The Centers for Disease Control and Prevention is probably the best science-based fountain of information about all infectious diseases. The CDC, in it’s best dry and objective tone of voice, states this about CLD (or what they call Post-Treatment Lyme Disease Syndrome, or PTLDS):
The CDC does state that there continues to be research into PTLDS. This is normal, and it doesn’t indicate that the CDC believes that CLD or PTLDS exists, it just wants to find out what may be the causes, beyond the thoroughly debunked chronic infection.
The CDC does state that many bacterial infections have lingering symptoms past the original infection. That’s science, but it does not support the chronic Lyme disease myth – in fact, it dismisses it.
Finally, the CDC states, about as emphatically as I’ve ever seen it state, that “prolonged courses of antibiotics” do not help. They’re no better than placebos.
Summary, the TL;DR version
Many public health and infectious disease specialists, using evidence published in the best journals, are troubled by the claims made about these chronic Lyme disease myths – they are being pushed by charlatans who have less than honorable intentions for these patients.
The Johns Hopkins group stated rather harshly, “the relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.”
Furthermore, the one group that almost always looks for ways to prevent paying out long term medical costs, the health insurance industry, refuses to pay for treatment of chronic Lyme disease (pdf). You might believe it’s because they want to save money from paying for these treatments, but since the since says “CLD does not exist”, it’s useless, like paying for homeopathy or acupuncture. They’d rather have the physician find the real diagnosis, and treat that.
There is no evidence that chronic Lyme disease exists. Real research says so. The CDC says so. The best research says so. There is no evidence that long-term antibiotic therapy does anything for those who have the symptoms associated with the nonexistent chronic Lyme disease.
To be fair, there are some articles, always published in low quality journals, that try to argue, without scientific evidence, that CLD is real. However, unless evidence is published in strong, peer-reviewed publications that support the existence (and subsequent treatment methods) for this disease, then standard treatment of Lyme disease should be considered the gold standard.
There is no chronic Lyme disease. And we should quit wasting money trying to treat a nonexistent disease.
Editor’s note: This original version of this article was originally published in 2012. It has been completely revised and updated to include more comprehensive information, to improve readability and to add current research.
- Auwaerter PG, Bakken JS, Dattwyler RJ, Dumler JS, Halperin JJ, McSweegan E, Nadelman RB, O’Connell S, Shapiro ED, Sood SK, Steere AC, Weinstein A, Wormser GP. Antiscience and ethical concerns associated with advocacy of Lyme disease. Lancet Infect Dis. 2011 Sep;11(9):713-9. PubMed PMID: 21867956.
- Bratton RL, Whiteside JW, Hovan MJ, Engle RL, Edwards FD. Diagnosis and treatment of Lyme disease. Mayo Clin Proc. 2008 May;83(5):566-71. Review. PubMed PMID: 18452688.
- Cooper JD, Feder HM Jr. Inaccurate information about lyme disease on the internet. Pediatr Infect Dis J. 2004 Dec;23(12):1105-8. PubMed PMID: 15626946.
- Fallon BA, Keilp JG, Corbera KM, Petkova E, Britton CB, Dwyer E, Slavov I, Cheng J, Dobkin J, Nelson DR, Sackeim HA. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 2008 Mar 25;70(13):992-1003. Epub 2007 Oct 10. PubMed PMID: 17928580.
- Fell E. An update on Lyme disease and other tick-borne illnesses. Nurse Pract. 2000 Oct;25(10):38-40, 43-4, 47-8 passim; quiz 56-7. Review. PubMed PMID: 11068777.
- Klempner MS, Hu LT, Evans J, Schmid CH, Johnson GM, Trevino RP, Norton D, Levy L, Wall D, McCall J, Kosinski M, Weinstein A. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. 2001 Jul 12;345(2):85-92. PubMed PMID: 11450676.
- Krupp LB, Hyman LG, Grimson R, Coyle PK, Melville P, Ahnn S, Dattwyler R, Chandler B. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003 Jun 24;60(12):1923-30. PubMed PMID: 12821734.
- Lantos PM. Chronic Lyme disease: the controversies and the science. Expert Rev Anti Infect Ther. 2011 Jul;9(7):787-97. PubMed PMID: 21810051.
- Marques AR. Lyme disease: a review. Curr Allergy Asthma Rep. 2010 Jan;10(1):13-20. Review. PubMed PMID: 20425509.
- McClellan L. Chronic Lyme disease: it’s time to solve the medical mystery inside an enigma. Health Aff (Millwood). 2012 Mar;31(3):647-9. PubMed PMID: 22392677.
- Nadelman RB, Hanincová K, Mukherjee P, Liveris D, Nowakowski J, McKenna D, Brisson D, Cooper D, Bittker S, Madison G, Holmgren D, Schwartz I, Wormser GP. Differentiation of reinfection from relapse in recurrent lyme disease. N Engl J Med. 2012 Nov 15;367(20):1883-90. doi: 10.1056/NEJMoa1114362. PubMed PMID: 23150958.
- Shapiro ED. Clinical practice. Lyme disease. N Engl J Med. 2014 May 1;370(18):1724-31. doi: 10.1056/NEJMcp1314325. Review. PubMed PMID: 24785207; PubMed Central PMCID: PMC4487875.