What Is Chronic Lyme Disease?

Chronic Lyme disease refers to a multisystem illness with persistent or recurring symptoms following infection with Borrelia burgdorferi, the bacteria responsible for Lyme disease.

Shor and colleagues identified a broad range of symptoms, signs, and medical conditions present in patients with acute and chronic Lyme disease. These manifestations were observed regardless of whether patients had previously received treatment.

The cases reviewed by the International Lyme and Associated Diseases Society (ILADS) working group were diagnosed with Lyme disease based on direct laboratory evidence of infection with Borrelia burgdorferi sensu lato (Bbsl), the group of bacteria that cause Lyme disease.

Neurologic and Neuropsychiatric Symptoms

Neurologic and neuropsychiatric manifestations reported in chronic Lyme disease include:

• Memory difficulties
• Decreased concentration
• Dizziness and vertigo
• Abnormal taste
• Decreased sensation
• Paresthesias and tingling
• Generalized or radicular pain
• Abnormal balance or gait
• Decreased dexterity
• Limb paralysis
• Spastic paraparesis
• Positive Babinski sign
• Areflexia or hyperreflexia
• Fasciculations
• Urinary incontinence

READ MORE: How do Lyme disease symptoms persist long term?

Systemic Symptoms of Chronic Lyme Disease

In addition to neurologic symptoms, the authors described a wide range of systemic manifestations associated with chronic Lyme disease.

• Fatigue
• Weight gain
• Orthostatic intolerance
• Heart palpitations
• Shortness of breath
• Cardiac arrhythmias
• Mitral valve regurgitation
• Musculoskeletal pain
• Head, ears, eyes, nose, and throat symptoms

These symptoms reflect the multisystem nature of Lyme disease and help explain why the illness can be difficult to recognize.

Medical Conditions Associated With Chronic Lyme Disease

The ILADS working group also identified numerous medical conditions associated with Lyme disease, including:

• Encephalomyelitis
• Encephalopathy
• Endocarditis
• Epilepsy or seizures
• Facial palsy
• Meningitis
• Carpal tunnel syndrome
• Panuveitis
• Polyarthritis
• Radiculoneuropathy
• Sensory-motor polyneuropathy
• Sensory neuropathy
• Synovitis

ILADS Definition of Chronic Lyme Disease

The ILADS working group 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 illness results from an active and ongoing infection by members of the Borrelia burgdorferi sensu lato complex.

The infection may have variable latency periods and symptoms may wax, wane, and migrate.

Chronic Lyme disease has two subcategories: untreated CLD (CLD-U) and previously treated CLD (CLD-PT). The latter occurs when symptoms persist or recur following treatment and continue for at least six months.”

Functional Impairment

The authors note that although many patients with persistent Lyme disease symptoms experience functional impairment, others do not meet strict criteria for disability.

For this reason, functional impairment was not included as part of the formal definition of chronic Lyme disease.

Editor’s Note: The ILADS definition highlights the wide range of symptoms and conditions associated with chronic Lyme disease. This broader perspective may help clinicians recognize Lyme disease even when patients do not recall a tick bite, do not develop the classic rash, or do not initially test positive.

Improved recognition of chronic Lyme disease may also encourage the development of better diagnostic criteria and research studies that include the many patients whose illness does not fit traditional definitions.

Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.

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