What is “chronic Lyme disease”?

sick man on couch with chronic lyme disease

“Chronic Lyme disease has been a poorly defined term and often dismissed as a fictitious entity,” write the authors of “Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group.” Therefore, after conducting an extensive review of published cases, the authors have developed an evidence-based definition of chronic Lyme disease. ¹

Shor and colleagues identified a broad range of symptoms, signs, and conditions present in acute and chronic Lyme disease patients regardless of whether or not they received treatment.All of the cases referenced by the International Lyme and Associated Diseases Society (ILADS) working group had been diagnosed with Lyme disease based upon direct laboratory evidence of infection with Borrelia burgdorferi sensu lato (Bbsl), the causative agent of Lyme.

Neurologic and neuropsychiatric signs and symptoms alone included memory difficulties, abnormal taste, dizziness, vertigo, decreased sensation, paresthesias tingling, generalized pain, radicular pain, decreased dexterity, abnormal gait, abnormal balance, limb paralysis, spastic paraparesis, positive Babinski, areflexia hyperreflexia, fasciculations, urinary incontinence, and decreased concentration.

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

Additionally, the authors described a broad range of clinical characteristics of chronic Lyme disease, which included fatigue, weight gain, orthostatic intolerance, palpitations, dyspnea, cardiac arrhythmia, mitral regurgitation, as well as numerous musculoskeletal and head, ears, eyes, nose, and throat problems.

The list of conditions associated with Lyme disease included encephalomyelitis, encephalopathy, endocarditis, epilepsy/seizure, facial palsy, meningitis, Alzheimer’s disease, carpal tunnel syndrome, panuveitis, polyarthritis, radiculoneuropathy, sensory-motor polyneuropathy, sensory neuropathy, and synovitis.

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 illness is the result of an active and ongoing infection by any of several pathogenic members of the Borrelia burgdorferi sensu lato complex (Bbsl).

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

CLD [Chronic Lyme disease] has two subcategories: CLD, untreated (CLD-U) and CLD, previously treated (CLD-PT). The latter requires that CLD [Chronic Lyme disease] manifestations persist or recur following treatment and are present continuously or in a relapsing/remitting pattern for a duration of six months or more.”

Functional Impairment

The authors point out that “Although many patients with persistent manifestations of Lyme disease following treatment are functionally impaired at some point in their illness, others will not meet the criteria for functional impairment.”

“Therefore, functional status is not a component of the definition.”

Editor’s Note: The ILADS definition should help doctors recognize the symptoms, signs, and conditions associated with Lyme disease even in the absence of a rash or positive test. Moreover, doctors will be encouraged to include these patients in research trials.

The definition of chronic Lyme disease, as defined by the ILADS working group, should encourage the development of diagnostic criteria that will include the substantial percentage of Lyme disease patients who do not exhibit a rash or have a positive Lyme test.

  1. 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 Dec 16;8(4).

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