Post-Treatment Lyme Disease Syndrome (PTLDS)

Why some people have ongoing symptoms after treated Lyme disease, and what is (and isn’t) known.

Intro

Post-treatment Lyme disease syndrome (PTLDS) describes ongoing symptoms such as fatigue, pain, and cognitive difficulties that persist after appropriate treatment for Lyme disease.

Key Points

  • PTLDS is recognised in guidelines as a real post-infectious syndrome.
  • Well-designed studies have not consistently shown ongoing active Borrelia infection in PTLDS.
  • Long-term or repeated antibiotic courses do not show sustained benefit and carry risks.
  • Management focuses on symptom control, function, and psychological support.

Background

A minority of people treated for Lyme disease have symptoms that persist for months or longer. This has led to debate and frustration for patients and clinicians.

Causes or Mechanisms

The exact mechanisms remain unclear. Hypotheses include:

  • Immune dysregulation or persistent inflammation
  • Neural/central sensitisation of pain and fatigue pathways
  • Overlap with other post-infectious syndromes and mood disorders

Diagnosis / Treatment / Options

PTLDS is a clinical diagnosis made after:

  • Documented Lyme disease
  • Appropriate antibiotic treatment
  • Excluding other causes of symptoms

Management includes:

  • Validating the patient’s experience and concerns
  • Addressing sleep, mood, and pain
  • Pacing and graded return to activity tailored to the individual
  • Avoiding unproven, potentially harmful long-term antibiotic regimens

Risks / Benefits / Prognosis

Many people improve gradually over time, but symptoms can be prolonged. Multidisciplinary support (primary care, rehabilitation, psychology) can help function and quality of life.

FAQ

Q: Does PTLDS mean the infection is still present?
A: Evidence generally does not support ongoing infection in PTLDS. It is considered a post-infectious syndrome.

Q: Are there biomarkers for PTLDS?
A: No validated specific biomarkers currently exist; research is ongoing.

Further Reading