Chronic Symptoms and Lyme Disease

Key points

  • Following antibiotic treatment, some people with Lyme disease have prolonged symptoms of fatigue, body aches, or difficulty thinking as a result of their infection.
  • Why some patients with Lyme disease develop these symptoms is not known; however, these symptoms have also been reported following other types of infections.
  • Lyme disease is one of many causes of such symptoms, so it is important to work with your healthcare provider to evaluate all possible causes and develop a treatment plan.
  • If you've been treated for Lyme disease with antibiotics and have prolonged symptoms, studies have shown that more antibiotics are unlikely to help.
Women talking to her healthcare provider.

Overview

Lyme disease is an illness caused by the bacteria Borrelia burgdorferi and spread by blacklegged ticks. Although most people recover completely when treated with a 2- to 4-week course of oral antibiotics, some can have prolonged symptoms of fatigue, body aches, or difficulty thinking. Studies published in the American Journal of Medicine (2010) and The Lancet Regional Health-Europe (2021) found that 6 months after treatment these symptoms are 5-10% more common among people who have had Lyme disease than among people who have not (see Key publications). The cause of these symptoms is currently unknown, but similar symptoms have been reported following other types of infections, including COVID-19.

If you have been treated for Lyme disease with a recommended regimen of antibiotics and continue to experience prolonged or recurring symptoms, it is important to work with your healthcare provider to evaluate all possible causes of your symptoms. While this can be difficult and time consuming, it is necessary so that you can receive the best care.

A word of caution‎

If you are experiencing fatigue, body aches, or difficulty thinking, it is important to know that there are many possible causes for these symptoms other than Lyme disease. These include other infections, medications, depression, diabetes, and cancer. It is especially unlikely that Lyme disease is the cause of prolonged or recurring symptoms if you tested negative for Lyme disease using a recommended test or have not lived in or traveled to areas where Lyme disease is common.

Treatment of prolonged symptoms

Patients with prolonged symptoms due to Lyme disease usually get better over time without additional antibiotics, but it can take many months to feel completely well. Careful studies conducted over the last two decades in the United States and Europe have generally found that extended treatment with antibiotics is no better than placebo for curing prolonged symptoms. Moreover, long-term antibiotic use has been linked to serious, even deadly, complications, such as sepsis (the body's extreme response to an infection) or colitis (inflammation of the colon).

Prolonged or recurring symptoms, no matter the cause, can lead to considerable suffering. There are steps you can take to reduce or manage prolonged symptoms and how they affect your life, even if the cause of the symptoms is not clear. Work with your healthcare provider to identify symptoms that have the greatest impact on your daily life. For some people this may be fatigue, for others it may be difficulty thinking and memory problems.

It's important that healthcare providers support patients and their families as they learn how to manage these symptoms. The following tips can help you get the most out of your visit with your healthcare provider:

  • Explain how you feel. Don't be embarrassed to talk about anything.
  • Ask questions, starting with the ones that are most important to you.
  • Don't hesitate to ask your healthcare provider to explain if something is not clear to you.
  • Set achievable goals through shared decision-making.

Strategies developed to help patients manage prolonged symptoms related to myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) may be useful to patients experiencing similar prolonged symptoms:

Recommended terminology

The condition where patients experience prolonged symptoms due to Lyme disease is called Post-Treatment Lyme Disease Syndrome (PTLDS) and its cause is currently unknown. The Centers for Disease Control and Prevention (CDC) encourages using this terminology when communicating about prolonged symptoms due to Lyme disease.

CDC discourages use of the term Chronic Lyme Disease because it implies that prolonged symptoms are caused by an ongoing bacterial infection when, in fact, the cause is not currently known.

Regardless of the term used, prolonged symptoms can have devastating effects on a person's life. There is a critical need to better understand the causes of prolonged symptoms in people who have had Lyme disease and best approaches to treatment and care.

What CDC is doing

CDC collaborates with public health partners, healthcare providers, patients who have Lyme disease, and advocacy groups to:

  • Conduct research to better understand the occurrence, risk factors, and impact of prolonged symptoms and Lyme disease.
  • Develop a common research agenda for infection-associated illnesses to better understand how to treat, manage, and support people with prolonged and chronic symptoms.
  • Provide education to healthcare providers regarding diagnosis and care for patients suffering from chronic symptoms.

CDC is committed to raising awareness about the growing threat of Lyme and other tickborne diseases, and the need for early and accurate Lyme disease diagnosis and prevention.

Resources

Additional Lyme disease resources

Key publications

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Content Source:
National Center for Emerging and Zoonotic Infectious Diseases (NCEZID)