Post-Treatment Lyme Disease Syndrome
Lyme disease is caused by infection with the bacterium Borrelia burgdorferi. Although most cases of Lyme disease can be cured with a 2- to 4-week course of oral antibiotics, patients can sometimes have symptoms of pain, fatigue, or difficulty thinking that linger for more than 6 months after they finish treatment. This condition is called Post-Treatment Lyme Disease Syndrome (PTLDS).
Why some patients experience PTLDS is not known. Some experts believe that Borrelia burgdorferi can trigger an “auto-immune” response causing symptoms that last well after the infection itself is gone. Auto–immune responses are known to occur following other infections, including campylobacter (Guillain-Barré syndrome), chlamydia (Reiter’s syndrome), and strep throat (rheumatic heart disease). Other experts hypothesize that PTLDS results from a persistent but difficult to detect infection. Finally, some believe that the symptoms of PTLDS are due to other causes unrelated to the patient’s Borrelia burgdorferi infection.
Unfortunately, there is no proven treatment for PTLDS. Although short-term antibiotic treatment is a proven treatment for early Lyme disease, studiesexternal icon funded by the National Institutes of Health (NIH) have found that long-term outcomes are no better for patients who received additional prolonged antibiotic treatment than for patients who received placebo. Long-term antibiotic treatment for Lyme disease has been associated with serious, sometimes deadly complications, as described in the links below.
Patients with PTLDS usually get better over time, but it can take many months to feel completely well. If you have been treated for Lyme disease and still feel unwell, see your healthcare provider to discuss additional options for managing your symptoms. 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 possible risks of such treatment.
- Strizova Z, Patek O, Vitova L, Horackova M, Bartunkova J. Internet-based self-diagnosis of Lyme disease caused death in a young woman with systemic lupus erythematosus.external icon Joint Bone Spine. 2019 Jan 17. pii: S1297-319X(19)30003-X. [Epub ahead of print]
- Goodlet KJ, Fairman KA. Adverse events associated with antibiotics and intravenous therapies for post-Lyme disease syndrome in a commercially insured sample.external icon Clin Infect Dis. 2018 Oct 30;67(10):1568-1574.
- 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.
- 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 icon Acta Clin Belg. 2017 Apr;72(2):133-137.
- Marks CM, Nawn JE, Caplow JA. Antibiotic treatment for chronic Lyme disease-Say no to the DRESS.external icon JAMA Intern Med. 2016 Dec 1;176(12):1745-1746.
- Lantos PM, Shapiro ED, Auwaerter PG, Baker PJ, Halperin JJ, McSweegan E, Wormser GP. Unorthodox alternative therapies marketed to treat Lyme disease.external icon Clin Infect Dis. 2015 Jun 15;60(12):1776-82.
- Holzbauer SM, Kemperman MM, Lynfield R. Death due to community-associated Clostridium difficile in a woman receiving prolonged antibiotic therapy for suspected Lyme diseaseexternal icon. Clin Infect Dis. 2010;51:369–370.
- Patel R, Grogg KL, Edwards WD, Wright AJ, Schwenk NM. Death from inappropriate therapy for Lyme diseaseexternal icon. Clin Infect Dis. 2000;31(4):1107-9.
- How to evaluate health information on the internet (FDA)external icon
- “I’ve got nothing to lose by trying it”external icon–A guide to understanding claims about cures and treatments. From the non-profit group, Sense about Science
- “I don’t know what to believe”external icon–A guide that explains how scientists present and judge research using the peer review process, and how the public can make sense of science stories. From the non-profit group, Sense about Science.