Neurological Lyme Disease Symptoms: 25 Years After a Landmark Study

Neurological symptoms may persist long after infection
Chronic neurologic Lyme disease affects multiple body systems
Recognition may improve diagnosis and treatment decisions

Neurological Lyme disease symptoms can include brain fog, neuropathy, fatigue, memory problems, hearing changes, and autonomic dysfunction. These symptoms became more widely recognized after landmark studies described chronic neurologic manifestations decades ago.

Neurological Lyme disease symptoms may fluctuate over time, making diagnosis difficult when symptoms appear months or years after infection.

It has been 25 years since chronic neurologic Lyme disease (CNL) was first described in a paper published in the New England Journal of Medicine. [1] The study’s investigators included Dr. Alan Steere, the physician credited with discovering Lyme disease in 1977.

In describing chronic neurologic Lyme disease (LD), this landmark study led to the recognition of other chronic manifestations of the disease including Lyme encephalopathy, [2,3] autonomic dysfunction, [4] neuropsychiatric Lyme disease, [5] Post LD, [6] post Lyme disease syndrome, [7] and post treatment Lyme disease syndrome. [8]

Common Neurological Lyme Disease Symptoms Reported in Early Studies

The 1990 paper, entitled Chronic Neurologic Manifestations of Lyme disease, examined 27 patients with chronic manifestations. [1] The most common symptoms included memory loss, depression, sleep disturbance, irritability, difficulty finding words, spinal or radicular pain, distal paresthesias (tingling sensations), sensory loss, fatigue, headache, hearing loss, tinnitus, and fibromyalgia.

Cognitive Symptoms in Chronic Neurologic Lyme Disease

Less common symptoms consisted of lower motor neuron weakness, ankle hyporeflexia (below normal or absent reflexes), upper-motor-neuron weakness, hyperreflexia (overactive reflexes), and increased muscle tone.

Symptoms often fluctuate over time, with periods of improvement followed by relapses or worsening neurologic complaints.

The CNL study also described chronic neurologic manifestations in patients who had a normal spinal tap. Only 2 of the 27 CNL patients had an abnormal spinal tap — one with a pleocytosis of seven cells and the other with an elevated IgG index.

Diagnostic uncertainty increased because some patients had significant neurologic symptoms despite limited objective findings.

Neuropathy and Nerve Symptoms in Chronic Neurologic Lyme Disease

The study’s groundbreaking description of chronic neurologic Lyme would have a profound influence on the clinical practice of medicine.

Seventy percent had polyneuropathy. Eleven had pain in the cervical, thoracic, or lumbosacral area of the spine, usually accompanied by tingling, burning, spasms, or shooting pain in the limb or trunk.

Seven had only distal paresthesia with intermittent tingling or “pins and needles” sensations in the hands or feet.

Neurologic manifestations may also include hearing changes, tinnitus, dizziness, or balance problems in some patients.

Four had mild-to-moderate unilateral hearing loss, sometimes accompanied by tinnitus.

Most had marked fatigue, which was often a major symptom of their illness.

Treatment Outcomes and Recovery

Treatment response varied considerably, suggesting that duration of illness and timing of intervention may influence outcomes.

Seventeen improved after two weeks of intravenous ceftriaxone but the recovery was seldom complete. Six improved but later relapsed and four did not improve. [1]

The authors raised several concerns. The likely reason for relapse may have been incomplete eradication or irreversible neurologic injury in some patients. [1]

The CNL authors later reproduced chronic manifestations in a case series of 18 patients meeting strict criteria for Lyme encephalopathy. [2]

Fallon et al validated the severity of persistent symptoms after treatment using standardized measures of fatigue, pain, role function, and cognition. [3]

The CNL paper has not been without controversy. While there are doctors who recognize the existence and severity of chronic manifestations of Lyme disease, [9] others remain skeptical. [10]

Frequently Asked Questions

What are neurological Lyme disease symptoms?

Symptoms may include memory problems, neuropathy, fatigue, brain fog, headaches, sleep disturbance, tinnitus, and cognitive slowing.

Can chronic neurologic Lyme disease occur years later?

Some patients in published studies reported symptoms months to years after earlier Lyme disease manifestations.

Can Lyme disease affect the nervous system?

Yes. Lyme disease may affect both the central and peripheral nervous systems in some patients.

Can Lyme disease cause tinnitus or hearing problems?

Some patients with neurologic Lyme disease report tinnitus, hearing changes, dizziness, or balance symptoms.

Clinical Takeaway

Recognition of chronic neurologic Lyme disease changed how clinicians evaluate persistent neurologic symptoms after infection.

The neurologic manifestations described decades ago continue to shape how clinicians evaluate persistent symptoms today.

Related Articles

Brain fog and Lyme disease
Persistent Lyme disease mechanisms
Persistent Lyme symptoms
Lyme disease symptoms guide

References

1. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
2. Logigian EL, Kaplan RF, Steere AC. Successful treatment of Lyme encephalopathy with intravenous ceftriaxone. J Infect Dis. 1999;180(2):377-383.
3. Fallon BA, Keilp JG, Corbera KM et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 2008;70(13):992-1003.
4. Kanjwal K, Karabin B, Kanjwal Y, Grubb BP. Postural orthostatic tachycardia syndrome following Lyme disease. Cardiol J. 2011;18(1):63-66.
5. Fallon BA, Nields JA, Burrascano JJ, Liegner K, DelBene D, Liebowitz MR. The neuropsychiatric manifestations of Lyme borreliosis. Psychiatr Q. 1992;63(1):95-117.
6. Krupp LB, Hyman LG, Grimson R et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003;60(12):1923-1930.
7. Mygland A, Ljostad U, Fingerle V, Rupprecht T, Schmutzhard E, Steiner I. EFNS guidelines on the diagnosis and management of European Lyme neuroborreliosis. Eur J Neurol. 2010;17(1):8-16, e11-14.
8. Aucott JN. Posttreatment Lyme disease syndrome. Infect Dis Clin North Am. 2015;29(2):309-323.
9. Cameron DJ, Johnson LB, Maloney EL. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Rev Anti Infect Ther. 2014:1-33.
10. Wormser GP, Dattwyler RJ, Shapiro ED et al. The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006;43(9):1089-1134.

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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