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"

  • Bekkah Morris
    09/28/2022 (10:05 pm)

    I know it’s been some time since anyone replied, but I want to leave my story in case I can be of help or someone can help me because I’m honestly at the end of my rope. I was diagnosed with neurological Lyme summer of 2021 after 2 months of strange & escalating symptoms, from fluctuating heart rate & fatigue to headaches in back of my head, stiff neck, knee & elbow arthritis, insomnia, weakness in arms/shoulders, & seizure/panic-like attacks. Lyme meningitis was suspected, but no confirmation with spinal tap. I was given 6 wks of oral Doxy, & was told within 6 months I should resolve. Most has to a point, but I have developed memory problems, issues retrieving words, & the attacks/weak arms haven’t stopped. In fact, tres still a near-daily experience for me. I’m also still unable to lay down on my back without my heart rate increasing, getting lightheaded, & feeling like I’m driving down a hill too fast.

    During these attacks, my arms & hands may go numb/tingly or not at all, but I’m unable to lift them above my belly button (almost like my upper body relaxes too much) & my shoulders ache. I still experience a strange feeling in my chest when the attacks start, almost like we’re driving down a hill too fast, I get at least mildly lightheaded, & I feel tingles in my upper body, which follows with a panic because I know it’s not right or normal… or maybe the panic itself is just part of it. I also feel short of breath without being short of breath. My oxygen, BP, & HR don’t even fluctuate much if at all during this, even though it feels like they do. The only relief I find on my own, strangely, is leaning over a pillow on my chest, like I’m relieving pressure on some sort of nerve. I have also developed some aversion to nearly any medication, herb, or thing in the air that interacts with the nervous system. I can no longer drink caffeine, use most otc meds including multivitamins, or herbs. Anesthetics like Lidocaine at the dentist & otc Azo for bladder pain – all send me into a severe attack. And I mean severe, hours long, rocking in the corner level attacks. I’ve been given Ativan to use in the most emergent of situations, which is honestly the only thing of the many things we’ve tried that calms this down… but I’ve basically been told that my doctors are no longer comfortable prescribing these & I’ve been trying my best to get through this on my own. Which honestly is eating me alive after months of this continuing day after day & to put it lightly, it’s a letdown that I can’t at least be comfortable during all of this.

    I’ve also tried several other medications, herbs, breathing techniques- you name it, I’ve done it. Neurology refuses to see me because I already have a Lyme diagnosis & so does ID to my knowledge. I just… I simply can’t find relief & I think another part of me feels a little hopeless when I comb through groups or sites like this with Lyme stories & don’t find anyone with anything near like my experience. I’m starting to wonder if it isn’t permanent nerve damage & how I’m going to keep supporting my family, as I’ve only gotten through to now on sheer determination. As strong as I am, as supportive as my family is, & as understanding as my work is… I can only take so much. As a as I hope no one else suffers through anything similar to my horror story, a little piece of me hopes someone at least knows what’s going on because even my own doctor is at a loss & we’re at a standstill.

    • Lynn
      11/07/2022 (6:32 am)

      Wow.. Bekkah! Sorry your experience has been so frustrating & difficult. I have been dealing with many of your symptoms for decades & being an LD clinical trial victim has left me continually struggling since 1995. My 3 children have been affected too. Ticks & the bacterias they carry have been here on Cape Cod for over 100 years! Good luck.. you may NEED to see a lyme literate doc soon or nothing.. will improve. Take care

    10/01/2020 (8:59 am)

    Over 2 years ago, I had severe pain in neck and shoulder which was worse at night and ended up sleeping for weeks in a recliner. PCP finally put me on steroids and sent me to a rheumatologist who finally took a Lyme test. I had every band positive! 6 weeks of Doxy, developed neuropathy from head to toe on left side of body. Did 30 days of IV Ceftriaxone and nerve pain and neuropathy kept getting worse. Saw many doctors and finally ended up last week with a neurologist who believes I have nerve damage due to Lyme and also believes there is no cure! I’m on Cymbalta and will increase till tolerated. I’m also on Propanalol for head tremors and also had Botox injections to calm down the muscles/nerves. (possibly Cervical Dystonia) Anyone else have this problem? Has anyone found anything to help with nerve pain and neuropathy?

    • Dr. Daniel Cameron
      10/01/2020 (6:53 pm)

      It sounds as if the neurologist is continuing to try thing. Some neurologists also try IVIG. I have patients who might benefit from a different antibiotic e.g. treatment for Babesia.

      • Kathy Osborn
        03/02/2022 (3:51 pm)

        Gabapentil works for nerve pain. 300mg 6 a day

  • Suzanne LaFreniere
    09/12/2020 (10:27 pm)

    I have most likely have had Lyme disease for over 15 years , diagnosed August 2019, positive Igenex bands 34,39 and 41. Most likely bitten in western Massachusetts, many symptoms for years, worsening overtime with feet neuropathy, burning feet, extreme muscular skeletal pain and joint pain.
    I finally found my way through my neurologist to an excellent infectious disease doc here in Northern California where I live. I did have a lumbar puncture which revealed multiple oligoclonal bands in spinal fluid and serum, this was more confirmation for Lyme , I had brain mri which revealed small white lesions.
    I was treated with 30 days IV ceftrioxone through a picc line followed by 4 weeks oral doxycycline 200 mgs, I began to feel better but a few months later it all came back with a vengeance, even more severe pain.

    I just began 30 days IV of a 3 cocktail antibiotic of Daptomycin, ceftrioxone by IV and then orally doxycycline 100 mgs twice a day . This combination is based on animal studies of eradicating the persister forms of Borrelia. The doc in charge of these studies is Dr Zhang of John Hopkins research studies on chronic Lyme .
    Has anyone here ever been on this triple antibiotic combo or is familiar with dr Zhang??

    • ALEX
      10/14/2020 (9:59 am)

      Hi Suzanne,

      How has the 3 cocktail antibiotic of Daptomycin, ceftriaxone, and doxycycline worked for you so far? I’ve been on ceftriaxone and doxycycline, but haven’t started the daptomycin yet.

      • Dr. Daniel Cameron
        10/14/2020 (2:48 pm)

        I have been following the daptomycin research but have not started using it.

  • David Pim
    09/10/2020 (10:22 am)

    I had Lyme disease 15 years ago, with muscular pain in legs and knees (mostly on the right). Although antibiotic treatment appeared to have cleared the infection, recently, lower back pain and severe pain along my legs has restarted. The symptoms are identical with what I previously experienced and more worryingly, I seem to be losing muscular strength in my right leg. I’m due for an MRI on my lower spine next week, but I am convinced that the bacteria have been lying dormant for years and are now starting up again.

    • Dr. Daniel Cameron
      09/10/2020 (7:30 pm)

      I would typically add a Lyme disease evaluation if the issues are not resolved. It could also be a new infection.

  • DR
    09/09/2020 (11:34 am)

    I am 55 y/o with chronic Lyme disease along with 5 Lyme co-infections (5 different Bartonella). I have had erratic blood pressure and heart rate for years that is very hard to control. My heart rate also goes up on its own without me doing much other than walking to the bathroom. When this happens my BP goes way up too most of the time. I am on 3 different blood pressure medications and one for emergencies. The emergency medicine, Hydralazine, usually works fast and as long as I stay in bed for a couple hours it passes. I have been been to the hospital dozens of times per year and get released after things pass. I am on Corlanor to keep my heart rate low (50s to low 60s) most of the time. I still find my heart rate jumping from 50s to the 120s daily then right back down 5 minutes later then back up and down again most of the day. I have a Fitbit to keep track of my heart rate and it is amazing to see the spikes every day all day even with the Corlanor and a Beta blocker BP pills twice a day. My BP or heart rate can go up independently or together. I have been on multiple high doses of antibiotics at the same time for months at a time and don’t seem to get much benefit other than taking down the Lyme and co-inflections for a short period of time. I seem to have triggers like having a glass of wine or a beer which send my BP up to 240’s over 140s. I am not a heavy drinker and enjoyed a beer or glass of wine out with friends once or twice a week when I could. I also have other side effects like constipation, brain fog, and overheating to name a few. I have had short periods where things went back to normal and I go to the bathroom normal as well as can have a beer or glass of wine. These good times are few and far between the last 4 years and it has been 11 months now straight with constant problems. If I didn’t work from my bed at home for the last 4 years I don’t think I could have worked and now it seems as if I can’t even work from bed at home without constant BP and heart rate issues. My symptoms and condition seem to get even worse with the change of seasons in the fall and cold weather in the winter. I don’t know what to do anymore and need help bad. What do you suggest?

    • Dr. Daniel Cameron
      09/10/2020 (7:58 am)

      I have had Lyme disease patients with autonomic issues similar to yours. I look again at tick borne infections as well as consult a cardiologist. I also consider POTS.

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