What Is Chronic Lyme Disease? Symptoms and Persistent Illness
Symptoms may persist long after infection.
Neurologic, cognitive, and autonomic problems are commonly reported.
Recognition of persistent illness remains important.
Chronic Lyme disease is a term used to describe patients with persistent or relapsing symptoms associated with Lyme disease. Symptoms may affect multiple body systems and can fluctuate over time.
Patients may report fatigue, pain, cognitive dysfunction, dizziness, sleep problems, autonomic symptoms, or neurologic complaints months or years after the initial infection.
This page reviews proposed definitions of chronic Lyme disease, common symptom patterns, functional impairment, and why persistent illness after Lyme disease remains controversial and difficult to study.
For a broader overview of symptom patterns associated with Lyme disease, visit our Lyme Disease Symptoms Guide.
Symptoms Reported in Chronic Lyme Disease
Shor and colleagues identified a broad range of symptoms, signs, and conditions present in acute and chronic Lyme disease patients regardless of whether treatment had already been provided.
The cases reviewed by the International Lyme and Associated Diseases Society (ILADS) working group were diagnosed based on direct laboratory evidence of infection with Borrelia burgdorferi sensu lato, the bacteria associated with Lyme disease.
Neurologic and neuropsychiatric symptoms reported in chronic Lyme disease included:
- Memory difficulties
- Dizziness and vertigo
- Paresthesias and tingling
- Generalized pain
- Radicular pain
- Decreased dexterity
- Abnormal gait and balance problems
- Urinary symptoms
- Decreased concentration
- Cognitive dysfunction
Additional symptoms described by the authors included fatigue, orthostatic intolerance, palpitations, dyspnea, musculoskeletal pain, and head, ear, eye, nose, and throat complaints.
Many of these symptoms overlap with neurologic Lyme disease, autonomic dysfunction, and persistent symptoms following treatment.
Conditions Associated With Persistent Lyme Symptoms
The ILADS working group also described a wide range of conditions associated with persistent Lyme symptoms, including:
- Encephalomyelitis
- Encephalopathy
- Facial palsy
- Meningitis
- Radiculoneuropathy
- Sensory neuropathy
- Polyarthritis
- Synovitis
- Epilepsy and seizure disorders
Some patients may also experience cognitive symptoms, mood changes, panic symptoms, or exercise intolerance that overlap with neuropsychiatric Lyme disease.
How ILADS Defines Chronic Lyme Disease
ILADS defines chronic Lyme disease (CLD) as:
“A multisystem illness with a wide range of symptoms and/or signs that are either continuously or intermittently present for a minimum of six months.”
The ILADS working group states that symptoms may wax, wane, migrate, and involve variable latency periods.
The definition includes two subcategories:
- CLD-U: Chronic Lyme disease, untreated
- CLD-PT: Chronic Lyme disease, previously treated
According to the working group, previously treated chronic illness involves persistent or relapsing symptoms that continue for six months or longer following treatment.
These persistent symptom patterns are often discussed alongside post-treatment Lyme disease syndrome (PTLDS), although definitions and mechanisms remain debated.
Functional Impairment and Persistent Illness
The ILADS authors noted that many patients with persistent manifestations of Lyme disease experience significant functional impairment during the course of illness.
At the same time, not every patient with ongoing Lyme-related illness meets formal criteria for disability or impairment at every stage of illness.
Symptoms may fluctuate over time, with periods of improvement followed by relapse or worsening.
Delayed diagnosis, fragmented care, and missed early symptoms may contribute to prolonged illness in some patients. Learn more about delayed Lyme disease diagnosis.
Why Chronic Lyme Disease Remains Controversial
Persistent symptoms following Lyme disease treatment remain controversial in medicine.
Some clinicians prefer the term post-treatment Lyme disease syndrome (PTLDS), while others use chronic Lyme disease to describe patients with ongoing symptoms, relapse, or evidence suggesting persistent infection.
Research continues into possible contributors including immune dysfunction, neuroinflammation, autonomic dysfunction, co-infections, and persistent inflammatory signaling.
The ILADS definition was developed in part to encourage broader recognition of symptom patterns and to improve inclusion of symptomatic patients in future research studies.
Frequently Asked Questions
What is chronic Lyme disease?
Chronic Lyme disease is a term used to describe persistent or relapsing symptoms associated with Lyme disease that may continue for months or years.
What symptoms are reported in chronic Lyme disease?
Symptoms may include fatigue, pain, dizziness, cognitive dysfunction, neurologic complaints, autonomic symptoms, and sleep problems.
Is chronic Lyme disease the same as PTLDS?
Not exactly. PTLDS and chronic Lyme disease are related but debated terms. Some clinicians use PTLDS for persistent symptoms after treatment, while others use chronic Lyme disease more broadly.
Can chronic Lyme disease affect the nervous system?
Yes. Some patients report neurologic symptoms such as balance problems, tingling, dizziness, memory difficulties, and cognitive dysfunction.
Why is chronic Lyme disease controversial?
Debate continues regarding terminology, mechanisms, diagnostic criteria, and the causes of persistent symptoms after Lyme disease treatment.
Clinical Takeaway
Chronic Lyme disease remains a complex and controversial area of medicine involving persistent neurologic, cognitive, autonomic, and inflammatory symptoms in some patients.
Recognition of persistent symptom patterns may help reduce delayed diagnosis, fragmented care, and prolonged disability while supporting continued research into mechanisms and treatment approaches.
Related Articles
Persistent Lyme Disease
Recovery From Lyme Disease
Lyme Coinfections
Prevention of Lyme Disease
Autonomic Dysfunction and Lyme Disease
References
- Shor S, Green C, Szantyr B, Phillips S, Liegner K, Burrascano JJ Jr, Bransfield R, Maloney EL. Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group. Antibiotics (Basel). 2019;8(4).
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
