Post-Treatment Lyme Disease Syndrome
Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called "chronic Lyme disease," this condition is properly known as "Post-treatment Lyme Disease Syndrome" (PTLDS).
The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and "auto–immune" responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter's syndrome), and Strep throat (rheumatic heart disease). In contrast, some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research, and clinical studies to determine the cause of PTLDS in humans are ongoing.
Regardless of the cause of PTLDS, studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo. Furthermore, long-term antibiotic treatment for Lyme disease has been associated with serious complications. The good news is that patients with PTLDS almost always get better with time; the bad news is that it can take months to feel completely well.
If you have been treated for Lyme disease and still feel unwell, see your doctor to discuss how to relieve your suffering. Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available.
It is normal to feel overwhelmed by your ongoing symptoms. Some things that may help you manage your PTLDS include:
- Check with your doctor to make sure that Lyme disease is not the only thing affecting your health.
- Become well-informed. There is a lot of inaccurate information available, especially on the internet. Learn how to sort through this maze.
- Track your symptoms. It can be helpful to keep a diary of your symptoms, sleep patterns, diet, and exercise to see how these influence your well-being.
- Maintain a healthy diet and get plenty of rest.
- Share your feelings. If your family and friends can't provide the support you need, talk with a counselor who can help you find ways of managing your life during this difficult time. As with any illness, Lyme disease can affect you and your loved ones. It doesn't mean that your symptoms are not real. It means that you are a human being who needs extra support in a time of need.
- "I don’t know what to believe"--This guide 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
- "I’ve got nothing to lose"--A guide to understanding claims about cures and treatments from the non-profit group, Sense about Science
- Pain management tools--From the American Chronic Pain Association log.
- Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research--Committee on Advancing Pain Research, Care, and Education; Institute of Medicine.
- Lyme disease clinical trials--A service of the U.S. National Institutes of Health.
Bockenstedt LK, Radolf JD. Xenodiagnosis for posttreatment Lyme disease syndrome: Resolving the conundrum or adding to it? Clin Infect Dis. first published online February 11, 2014 doi:10.1093/cid/cit942.
Marques, A. Chronic Lyme disease: a review. Infect Dis Clin North Am 2008; 22:341–60.
Marques, A. et al. Xenodiagnosis to detect Borrelia burgdorferi infection: A first-in-human study. Clin Infect Dis. first published online February 11, 2014 doi:10.1093/cid/cit939.
Feder, et al. A critical appraisal of "chronic Lyme disease". New Eng. J. Med. 2008; 357:1422–30.
The following publications refer to studies in mice and monkeys. Please note that while animal studies are helpful, further research is necessary to determine whether these results correlate with human disease.
Barbour A. Remains of infection. J Clin Invest. 2012 Jul 2;122(7):2344–6. doi: 10.1172/JCI63975. Epub 2012 Jun 25.
Bockenstedt LK, Gonzalez DG, Haberman AM, Belperron AA. Spirochete antigens persist near cartilage after murine Lyme borreliosis therapy. J Clin Invest. 2012 Jul 2;122(7):2652–60. doi: 10.1172/JCI58813. Epub 2012 Jun 25.
Embers ME, Barthold SW, Borda JT, Bowers L, Doyle L, et al. (2012) Persistence of Borrelia burgdorferi in Rhesus macaques following antibiotic treatment of disseminated infection. PLoS ONE 7(1): e29914.
HHS Special Webinar on Lyme Disease Persistence