Chronic Lyme disease

Overview

Chronic Lyme disease is a controversial and widely debated term used to describe persistent symptoms that continue after treatment for Lyme disease, a bacterial infection caused by Borrelia burgdorferi transmitted through tick bites. While most cases of Lyme disease resolve with appropriate antibiotics, some individuals report ongoing fatigue, joint pain, cognitive difficulties, and other symptoms lasting months or even years. The medical community often refers to this as Post-Treatment Lyme Disease Syndrome (PTLDS), as there is no confirmed evidence of ongoing infection in most of these cases.

Causes

Chronic Lyme disease is not universally recognized as a distinct medical condition. The causes of prolonged symptoms after Lyme disease treatment remain uncertain, but possible contributing factors include:

• Residual immune response: The immune system may continue to cause inflammation after the bacteria are cleared.

• Tissue damage: Lyme disease may cause lasting injury to joints or nerves during the initial infection.

• Coinfections: Ticks can carry other pathogens, such as Bartonella or Babesia, that may complicate recovery.

• Autoimmune reaction: In some individuals, the infection may trigger immune responses that persist after the bacteria are gone.

• Mislabeled conditions: Some symptoms may be due to other undiagnosed or overlapping chronic conditions (e.g., fibromyalgia, chronic fatigue syndrome).

Symptoms

Symptoms attributed to chronic Lyme disease or PTLDS are broad and nonspecific, often overlapping with other chronic illnesses. Commonly reported symptoms include:

• Fatigue: Often severe and debilitating

• Muscle and joint aches: With or without swelling

• Brain fog: Difficulty with memory, concentration, and word-finding

• Headaches

• Sleep disturbances

• Depression or mood changes

• Nerve pain or numbness

• Sensitivity to light or sound

Symptoms may persist despite having completed the standard course of antibiotics and often fluctuate in severity over time.

Diagnosis

There is no specific test to diagnose chronic Lyme disease. Diagnosis is often based on medical history and exclusion of other conditions. Diagnostic evaluation typically includes:

• Review of Lyme disease history: Including known tick exposure and initial treatment

• Serologic testing: Two-tiered testing with ELISA and Western blot to confirm prior infection

• Physical exam and symptom assessment

• Rule out other causes: Including autoimmune diseases, fibromyalgia, chronic fatigue syndrome, and psychiatric conditions

Many symptoms associated with chronic Lyme disease are subjective and do not have measurable biomarkers, making diagnosis challenging.

Treatment

Treatment for chronic Lyme disease or PTLDS is primarily supportive and symptom-focused. Long-term antibiotic use is not recommended by most major health organizations, including the CDC and Infectious Diseases Society of America (IDSA), due to lack of proven benefit and potential harm. Common treatment approaches include:

• Symptom management:

  • Nonsteroidal anti-inflammatory drugs (NSAIDs) for joint pain

  • Sleep aids or cognitive therapy for insomnia and brain fog

  • Antidepressants or psychotherapy for mood disturbances

• Physical therapy: To maintain joint mobility and reduce muscle stiffness

• Exercise programs: Gentle, graded activity to combat fatigue (used cautiously)

• Nutrition and lifestyle changes: Including a balanced diet and stress reduction techniques

• Multidisciplinary care: Involving primary care, neurology, rheumatology, and mental health providers

Prognosis

The prognosis for individuals with chronic Lyme-like symptoms varies. Many people gradually improve over time with supportive care and symptom-targeted treatment, though some may experience persistent disability. Early treatment of acute Lyme disease offers the best chance for full recovery. Continued research is needed to better understand the mechanisms behind long-term symptoms and to develop more effective therapies. Education, validation of patient experiences, and comprehensive care are essential for improving quality of life in those affected.