Chronic Symptoms and Lyme disease

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.

Lyme disease is an illness caused by the bacteria Borrelia burgdorferi, spread by blacklegged ticks. Although most patients recover completely when treated with a 2- to 4-week course of oral antibiotics, about 5-10% can have prolonged symptoms of fatigue, body aches, or difficulty thinking following treatment. 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.

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.

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