Lyme disease is the most common vector-borne disease in the United States, and its geographic range is expanding. With more people exposed to tick habitat and tick bites, more clinicians will find themselves caring for patients with Lyme disease. Confusion regarding Lyme disease is common and many patients who experience unexplained, long-lasting symptoms may be curious if Lyme disease is the cause.
How to use this toolkit
This toolkit (download PDF) can help physicians and other health care professionals provide better care for patients with prolonged symptoms and concerns about Lyme disease. The toolkit gathers:
- Best practices and guidance from CDC, medical professional societies including American Academy of Neurology (AAN), American Academy of Physical Medicine and Rehabilitation (AAPM&R), American College of Rheumatology (ACR), Infectious Diseases Society of America (IDSA) and practicing clinicians
- Resources for patients and health care professionals
- Interviews with experts
- A CME module
- Video examples of health care professionals who care for complex patients
- Tips on how to provide comprehensive and empathetic care
Explore the steps below to learn more.
Download the toolkit
Epidemiology and etiology of Lyme disease
Lyme disease is caused by certain Borrelia bacteria that are transmitted by the bite of an infected blacklegged (Ixodes) tick. In the United States, over 95% of reported Lyme disease cases occur in 15 high-incidence states, although incidence is increasing in neighboring states and some cases occur on the West coast each year. Treatment is a 10-28-day course of antibiotics. With this treatment, most patients recover quickly and completely within 6 months. However, some patients with a diagnosis of early or disseminated Lyme disease go on to develop prolonged symptoms, sometimes called Post-Treatment Lyme Disease Syndrome (PTLDS).
About chronic Lyme disease
There is no established medical definition of the term
The term chronic Lyme disease has no established medical definition but has been used by some clinicians and patients to give a name to long-lasting, unexplained and often debilitating symptoms that some patients experience.
No two patients with prolonged symptoms and concerns about Lyme disease are the same. Some patients believe strongly that they have persistent infection and may be receiving or seeking specific treatment; others are simply wondering if their symptoms might be explained by Lyme disease. Each clinic visit is an opportunity to listen as well as to educate.
Symptoms, like fatigue and brain fog, occur at a higher rate in patients with Lyme disease compared to patients without
While it is difficult to quantify, studies have shown that prolonged symptoms—such as fatigue, cognitive impairment, and pain—are widely prevalent in the general population. In prospective studies of patients with Lyme disease, prevalence of prolonged symptoms at 6 months after treatment generally averages between 5-10% higher than general population control groups.
Many infections can lead to Infection-Associated Chronic Illness, but a common pathophysiology is not yet known
Studies have demonstrated that PTLDS is not due to ongoing infection and that prolonged courses of antibiotics do not result in sustained improvement. Many infections can cause a post-acute infection syndrome (PAIS) or infection-associated chronic illness (IACI), most notably Long COVID or Post Acute Sequelae of COVID following SARS-CoV-2 infection.
Some patients with concerns about Lyme disease may lack clinical or laboratory evidence of prior or active Borrelia infection. Other potential causes for prolonged symptoms include viral infections, endocrine disorders, rheumatologic disorders, mental health disorders, medication side effects, and cancer. Whatever the cause of patients’ prolonged symptoms, they are real, and clinicians can help address these patients’ concerns.
Dive deeper
- For details on the origin and use of the toolkit, see CDC and AMA’s COCA Call.
- For more information on the term chronic Lyme disease and challenges clinicians face, watch an informational webinar.
- Paul Auwaerter, MD, MBA, clinical director, Division of Infectious Diseases, and professor of medicine at the Johns Hopkins University School of Medicine, reviews the epidemiology and classic presentations of Lyme disease.
- For further information on the epidemiology, prevention, diagnosis and treatment of Lyme disease, explore the following resources.
- Interpretation of laboratory results
- Training modules with continuing medical education (CME)
- Webinars
- Resources
- Clinical practice guidelines
- Patient information
- Information about ticks
- Tickborne diseases
- Prevention of tick bites
- Lyme disease prophylaxis after a high-risk tick bite
- Interpretation of laboratory results
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This effort is supported through a cooperative agreement (grant number NU50CK000597). The U.S. Centers for Disease Control and Prevention is an agency within the Department of Health and Human Services (HHS). The contents of this course do not necessarily represent the policy of CDC or HHS and should not be considered an endorsement by the Federal Government.
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