Six cases of neurological Lyme disease

older man in hospital bed with neurological lyme disease

Clinicians from Mayo Clinic describe 6 cases of neurological Lyme disease in the journal Open Forum Infectious Diseases. [1] Five of the cases presented with Bannwarth syndrome (BWS), an uncommon manifestation of neurologic Lyme disease.

Bannwarth syndrome is characterized by painful radiculopathy, neuropathy, varying degrees of motor weakness and facial nerve palsy, and cerebrospinal fluid (CSF) lymphocytic pleocytosis. Five patients presented with peripheral nervous system involvement (primarily axonal in nature), which is consistent with BWS, writes Shah and colleagues.  Three of the cases of neurological lyme disease are discussed below.

61-year-old male

A 61-year-old male, who had a history of daily exposure to ticks, presented with “progressive back pain, upper torso and extremity paresthesias, right-sided facial droop, and blurry vision in the right eye,” writes Shah. Four weeks prior, he was treated for an EM rash with 5 days of doxycycline, given twice daily.

Test results indicated positive IgM and IgG antibodies to B. burgdorferi and he was diagnosed with neurologic Lyme disease (also known as Lyme neuroborreliosis) and BWS. According to Shah, “the patient demonstrated significant neurologic improvement following 4 weeks of intravenous (IV) ceftriaxone.”

62-year-old female

A 62-year-old female presented with subacute onset of lower extremity weakness. This progressed over a 3-week period to flaccid paralysis, writes Shah. The woman also complained of radiating low back and abdominal pain with associated numbness.

[bctt tweet=”Study describes patients with Lyme disease presenting as Bannwarth syndrome. ” username=”DrDanielCameron”]

Tests confirmed the diagnosis of Bannwarth syndrome and neurologic Lyme disease. “A magnetic resonance image (MRI) of her spine showed diffuse inflammation of the cauda equine,” writes Shah. A pleocytosis by spinal tap and a positive real-time polymerase chain reaction (RT-PCR) assay confirmed the diagnosis.

After receiving a 4-week course of IV ceftriaxone, the woman reported that her mobility had improved. Although she still required extensive assistance for 2 months post-treatment, the authors explain.

29-year-old male

In June 2017, a 29-year-old male developed fever, myalgias, chills, headache, and fatigue. He also reported a transient erythematous (or EM) rash on his trunk. Two weeks later, he developed “right foot drop, Trendeleberg gait, lower extremity radiculopathy, and painful L5-S1 paresthesias,” explains Shah. And over the next 10 weeks, the man lost 15 pounds.

After refusing a spinal tap, the man was diagnosed based on his clinical presentation and positive Lyme disease test results. After two weeks of treatment with IV ceftriaxone, he reported having no symptoms. (It is not clear how often Bannworth syndrome occurs in actual practice with or without a confirmatory spinal tap.)

All 5 patients presented with upper or lower extremity radiculopathy and/or paresthesias. There were, however, several other findings. “The more widespread peripheral neuropathy observed for the remaining 3 patients in this series is somewhat atypical,” writes Shah, as “2 patients developed visual disturbances and nerve root enhancement in the cauda equina or lumbar spine, and 1 presented with Lyme disease-associated facial nerve palsy.”

The authors recommend, “The constellation of neurological symptoms, particularly when associated with a recent or suspected tick bite in a [Lyme disease]-endemic region, should prompt clinical evaluation for LNB [neurologic Lyme disease] and assessment for BWS [Bannworth syndrome] as this syndrome may be more common than previously presumed in North America.”

  1. Shah A, O’Horo JC, Wilson JW, Granger D, Theel ES. An Unusual Cluster of Neuroinvasive Lyme Disease Cases Presenting With Bannwarth Syndrome in the Midwest United States. Open Forum Infect Dis. 2018;5(1):ofx276.

31 Replies to "Six cases of neurological Lyme disease"

  • Debbie
    09/07/2020 (3:47 pm)

    How reliable is a spinal tap for Lyme disease compared to a blood test? At this point I’d do it just to find out if I had it. I feel like my family dr should be telling me this instead of me scrounging around the internet for every morsel of information I come across. Which a lot I forget due to brain fog. I’m at my wits end.

    • Dr. Daniel Cameron
      09/08/2020 (12:58 am)

      In the Logigian and colleagues study, only one in ten neurologic Lyme disease patients tested positive for Lyme disease by spinal tap. I have had to use clinical judgement.

    • Suzanne LaFreniere
      09/12/2020 (10:40 pm)

      I had a lumbar puncture and what my doc was looking at as confirmation of Lyme were the presence of oligoclonal bands , multiple bands were present in both my spinal fluid and blood serum which indicates more of an infectious agent, if these oligoclonal bands are found in just the spinal fluid and not in the blood this is more indicative of MS or other diseases. Hope this is helpful

      • Dr. Daniel Cameron
        09/13/2020 (8:02 am)

        Medicine is not as simple as we thought. Oligoclonal bands can have other causes including Lyme disease.

    08/07/2020 (1:22 pm)

    Hi Dr,
    My name is Chinyere Evulukwu. I have been suffering with debilitating symptoms for four months. It started with panic attacks and derealizazion/dp, then trouble sleeping because of bad headaches and sensations along with feet numbness, back cramps, weakness, frequent urination, dry mouth, floaters, parasthesia. My mom has a weird medical history but she’s smelling things that are not there. My dad also had a weird illness that messed up his lungs and he had to be on oxygen for a while. Now he suffers from weird neurological symptoms and really bad hip arthritis. I’ve been to different doctors and no one has found anything except my low red, hemoglobin, and white blood cells. Also done eeg and mri which showed non specific white matter. I’ve done the basic Lyme test and it came out negative so my pcp doesn’t want to treat me even after I described my symptoms to him. I’m sleeping better now but i have weakness and this weird feeling of depersonalization and derealization. I really don’t know what to do.

    • Dr. Daniel Cameron
      08/07/2020 (5:06 pm)

      I find tick borne testing not as reliable as I would like. I have to include specialists to rule out other causes of illness. I have to use clinical judgment to determine who to treat if the tests are negative. I have seen derealization in Lyme disease patients. They typically have other issues to support the diagnosis. Call my office at 914 666 4665 if you have any questions.

  • Jennifer Dauria
    06/10/2020 (12:34 pm)

    I have not tested positive for Lymes but had two bands on the Western Blot test which they said that means I was exposed to Lymes years ago. I lived in East Hampton . I went through a bout of heart palpitations three years ago , with dizziness , night sweats and fatigue. I have had two spinal taps which were negative and an MRI in NYC that showed nothing . I now am on a walker as without it I fall , my right foot drags. I saw a Lymes specialist in NYC who put me on a 4.5 month treatment of ceftriaxone it stabilized me but no improvement. I stopped that treatment and have gotten worse. Are there any new protocals for the treatment of chronic neurological Lymes? I am 73 and live in Jupiter Florida, i just can’t walk I am not really in pain.

    • Dr. Daniel Cameron
      06/10/2020 (2:41 pm)

      There are other treatments. For example, I have found treatment for Babesia helpful. I also look for other illnesses at the same time. You could call my office at 914 666 4665 with any questions or a telemedicine visit.

    • Lynn Villella
      10/21/2022 (8:42 pm)

      I have all of your symptoms as well. Have you figured anything out

  • Linda Boucher
    06/07/2020 (9:06 pm)

    I was diagnosed with late stage Lyme disease about 5 years ago had a spinal tap and it’s positive all through my cns. Had 2 rounds of oral antibiotics then a pic line , still positive had another pic line . What a horrible experience ended up with cdiff, cold wet feeling through my legs, feeling like my body was turning into stone . Had 5 major surgeries, and broke my femer bone 6 months ago. My body is full of arthritis from head to toe , now I have a torn disc and more arthritis in 2 discs more surgery. Does anyone know if Lyme disease ever goes away. Does anyone have the same symptoms. I’m at the end of my rope. Sometimes live is not worth living, it just gets worse and worse. I’m lost and need help . Thanks for listening to my story. I had someone reread this to correct my mistakes as my brain goes wild with thoughts and forgetting things. .

    • Nancy Taflin
      06/28/2020 (10:36 am)

      I feel the same way. I don’t know how much more I can take. I’ve gotten Lyme 3 times and the first in 2002 and the doctor never told me. I got horrible muscle spasms all up my legs and hands and each night have to swallow 8-10 large magnesium pills. 2013 I got small fiber neuropathy and my feet are numb, inflammatory arthritis and dysautonomia. Lost my sense of smell etc. this May I got it again and the neuropathy in my legs increased 10 fold and now my left hand is numb. I also have awful osteoarthritis and this horribly painful psoas tendinopathy. Now can barely walk up a flight of stairs. The abx have made me herx so bad and so nauseous and weak. I had a non-definitive cancer test come back positive twice. I see the oncologist tomorrow and have to drink 2 things of barium for a gi cat scan and my psoas started hurting again. I don’t know how much I can take or what I did to deserve this. My whole life since 2013 has been doctors and research trying to get better but I keep getting worse. The only thing that keeps me going is that I know how many other people are suffering from Lyme disease. I don’t know why the medical establishing it does not recognize this horrific disease and what I can do to a persons body. A woman down the street from me is in a wheelchair permanently from it. I guess I’m not ready to give up hope yet. I wish I could talk to you.

  • Beth
    08/12/2019 (5:02 pm)

    Hang in there and keep advocating for yourself. Keep looking for a doc that will listen. My darling daughter had bad symptoms for 3+years that we were told were all in her head. She has been since diagnosed with Lyme and we are finally getting treatment. It took me one day, saying NO, no more telling us there’s nothing wrong with her. Hang in there. Reach out to Lyme community, Facebook has been a good place for me, as her mom. Best of luck!

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