Post-Treatment Lyme Disease Syndrome
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Want to learn more? These resources can help:
- “How to find a good doctor”External–An online reference by Consumer Reports with tips for choosing a doctor
- How to evaluate health information on the internetExternal–Tips from the Food and Drug Administration (FDA)
- Directory of State Medical and Osteopathic BoardsExternal–Make sure your physician is licensed. You can also view any legal action taken against your practitioner. (Sanctions from one state will not necessarily appear on the records from another state.)
- “I’ve got nothing to lose by trying it”External–A guide to understanding claims about cures and treatments from the non-profit group, Sense about Science
- “I don’t know what to believe”Cdc-pdf[PDF – 8 pages]External –A guide that explains how scientists present and judge research and how you can ask questions about the scientific information presented to you. From the non-profit group, Sense about Science
- FDAExternal–Provides links to warnings, letters of complaint, and recall information for medical devices, supplements, and approved or non-approved drugs
- Lyme disease clinical trialsExternal
- HHS Special Webinar on Lyme Disease Persistence, 2014
Lyme disease is an infection caused by the bacterium Borrelia burgdorferi. In the majority of cases, it is successfully treated with oral antibiotics. Physicians sometimes describe patients who have non-specific symptoms (like fatigue, pain, and joint and muscle aches) after the treatment of Lyme disease as having post-treatment Lyme disease syndrome (PTLDS) or post Lyme disease syndrome (PLDS). The cause of PTLDS is not known.
The term “chronic Lyme disease” (CLD) has been used to describe people with different illnesses. While the term is sometimes used to describe illness in patients with Lyme disease, in many occasions it has been used to describe symptoms in people who have no evidence of a current or past infection with B. burgdorferi (Infect Dis Clin N Am 22:341-60, 2008). Because of the confusion in how the term CLD in this field is employed, experts do not support its use (New Engl J Med357:1422-30, 2008). For more information, visit the National Institutes of Health Chronic Lyme DiseaseExternal site.
Dangers of long-term or alternative treatments for Lyme disease
Studies funded by the National Institutes of Health (NIH)External have not shown that people who received prolonged courses of antibiotics do better in the long run than people treated with placebo. Furthermore, long-term antibiotic or alternative treatments for Lyme disease have been associated with serious complications.
If you are considering long-term antibiotic treatment for ongoing symptoms associated with a Lyme disease infection, please talk to your healthcare provider about the associated risks. If you feel that you need a second opinion, university-affiliated hospitals provide high-quality care.
- De Wilde M, Speeckaert M, Callens R, Van Biesen W. Ceftriaxone-induced immune hemolytic anemia as a life-threatening complication of antibiotic treatment of ‘chronic Lyme disease’.External Acta Clin Belg. 2017 Apr;72(2):133-137.
- Ettestad PJ, Campbell GL, Welbel SF, et al. Biliary complications in the treatment of unsubstantiated Lyme diseaseExternal. J Infect Dis. 1995;171:356–361.
- Holzbauer SM, Kemperman MM, Lynfield R. Death due to community-associated Clostridium difficile in a woman receiving prolonged antibiotic therapy for suspected Lyme diseaseExternal. Clin Infect Dis. 2010;51:369–370.
- Lantos PM, Shapiro ED, Auwaerter PG, Baker PJ, Halperin JJ, McSweegan E, Wormser GP. Unorthodox alternative therapies marketed to treat Lyme disease.External Clin Infect Dis. 2015 Jun 15;60(12):1776-82.
- Marks CM, Nawn JE, Caplow JA. Antibiotic treatment for chronic Lyme disease-Say no to the DRESS.External JAMA Intern Med. 2016 Dec 1;176(12):1745-1746.
- Marzec NS, Nelson C, Waldron PR, et al. Serious bacterial infections acquired during treatment of patients given a diagnosis of chronic Lyme disease – United States. MMWR Morb Mortal Wkly Rep. 2017 Jun 16;66(23):607-609.
- Patel R, Grogg KL, Edwards WD, Wright AJ, Schwenk NM. Death from inappropriate therapy for Lyme diseaseExternal. Clin Infect Dis. 2000;31(4):1107-9.
- Centers for Disease Control and Prevention (CDC). Ceftriaxone-associated biliary complications of treatment of suspected disseminated Lyme disease–New Jersey, 1990-1992. MMWR Morb Mortal Wkly Rep. 1993 Jan 22;42(2):39-42.