What is the incidence of Post-Treatment Lyme Disease Syndrome (PTLDS)?

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Dainyal Siddiqui, MD

Internal Medicine

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Manuel Jimenez, MD

Cardiology

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Franz Pierre-Louis, MD

Infectious Disease

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Last updated: April 6, 2025 • View editorial policy

From the Guidelines

The incidence of Post-Treatment Lyme Disease Syndrome (PTLDS) occurs in approximately 10-20% of patients who have been treated for Lyme disease with appropriate antibiotic therapy. This syndrome is characterized by persistent symptoms such as fatigue, cognitive difficulties, joint and muscle pain, and sleep disturbances that last for more than six months after completing standard antibiotic treatment. The standard treatment for Lyme disease typically involves doxycycline (100mg twice daily for 10-21 days), amoxicillin (500mg three times daily for 14-21 days), or cefuroxime (500mg twice daily for 14-21 days), depending on the stage and manifestation of the disease. Despite completing this treatment, some patients develop PTLDS. The exact cause remains unclear, but theories include persistent infection, immune system dysfunction, or inflammatory responses triggered by the initial infection. Currently, there is no proven effective treatment specifically for PTLDS. Management focuses on symptom relief through non-steroidal anti-inflammatory drugs for pain, cognitive behavioral therapy, gradual exercise programs, and addressing specific symptoms as they arise. Extended antibiotic therapy is not recommended as studies have not shown consistent benefits and may pose risks of adverse effects, as stated in the 2021 guidelines by the Infectious Diseases Society of America (IDSA), American Academy of Neurology (AAN), and American College of Rheumatology (ACR) 1.

Some key points to consider in the management of PTLDS include:

  • The lack of objective evidence of reinfection or treatment failure, which would include objective signs of disease activity, such as arthritis, meningitis, or neuropathy 1.
  • The consideration of exclusion of other causes of joint swelling than Lyme arthritis, medication adherence, duration of arthritis prior to initial treatment, degree of synovial proliferation versus joint swelling, patient preferences, and cost 1.
  • The potential use of a second course of oral antibiotics for up to 1 month as a reasonable alternative for patients in whom synovial proliferation is modest compared to joint swelling and for those who prefer repeating a course of oral antibiotics before considering IV therapy 1.
  • The suggestion of a 2–4-week course of IV ceftriaxone over a second course of oral antibiotics for patients with Lyme arthritis with no or minimal response to an initial course of oral antibiotic 1.

It is essential to note that the 2021 guidelines by the IDSA, AAN, and ACR provide the most recent and highest quality evidence for the management of PTLDS, and therefore, their recommendations should be prioritized in clinical practice 1.

From the Research

Incidence of Post-Treatment Lyme Disease Syndrome

  • The incidence of Post-Treatment Lyme Disease Syndrome (PTLDS) is approximately 10% of patients with Lyme disease following antibiotic treatment 2.
  • A study using administrative claims data found that the PTLDS-to-Lyme APS case ratio was 3.42% 3.
  • PTLDS occurs in a portion of patients diagnosed with chronic Lyme disease (CLD), although the exact percentage is not specified 4.

Characteristics of PTLDS

  • PTLDS is characterized by persistent, subjective symptoms such as fatigue, pain, and cognitive impairment that last for ≥6 months following antibiotic treatment for Lyme disease 2, 5.
  • The co-occurrence of certain chronic conditions, such as anemia, hyperlipidemia, and osteoarthrosis, is significantly higher in PTLDS patients compared to those with Lyme disease without prolonged symptoms 3.
  • Metabolic differences exist between PTLDS and non-PTLDS patients, including alterations in glycerophospholipid, bile acid, and acylcarnitine metabolism 2.

Diagnosis and Treatment

  • PTLDS is a diagnosis of exclusion, requiring careful evaluation of differential diagnosis and counseling about optimal management 5.
  • Current evidence shows that prolonged antibiotic therapy provides little benefit and carries significant risk 4.
  • Further research is needed to understand the mechanisms underlying persistent symptoms after Lyme disease and to develop effective treatments for PTLDS 4, 6.

References

2
Research

Metabolic Response in Patients With Post-treatment Lyme Disease Symptoms/Syndrome.

Clinical infectious diseases : an official publication of the Infectious Diseases Society of America, 2021

4
Research

Persistent Symptoms After Treatment of Lyme Disease.

Infectious disease clinics of North America, 2022

5
Research

Posttreatment Lyme Disease Syndrome-What It Might Be and What It Is Not.

The Pediatric infectious disease journal, 2021

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Professional Medical Disclaimer

This information is intended for healthcare professionals. Any medical decision-making should rely on clinical judgment and independently verified information. The content provided herein does not replace professional discretion and should be considered supplementary to established clinical guidelines. Healthcare providers should verify all information against primary literature and current practice standards before application in patient care. Dr.Oracle assumes no liability for clinical decisions based on this content.

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