Six cases of neuroinvasive Lyme disease

A cluster of six neuroinvasive Lyme disease cases is described by doctors from Mayo Clinic in the journal Open Forum Infectious Diseases. [1] Over a 3-week period between July and August of 2017, physicians from the Minnesota and Wisconsin campuses identified 6 patients with Lyme neuroborreliosis. Five of these cases presented with Bannwarth syndrome (BWS), an uncommon manifestation of neuroinvasive Lyme disease, which is typically seen in Europe, explains Shah and colleagues.

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, Shah says, presented with peripheral nervous system involvement (primarily axonal in nature), which is consistent with BWS. We discuss three of the cases 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 LNB/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.

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

The patient was diagnosed with LNB/BWS and discharged on a 4-week course of IV ceftriaxone. “The patient reported improved mobility,” says Shah, “though she still required extensive assistance 2 months post-treatment.”

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 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, he lost 15 pounds.

After refusing a spinal tap, the man was diagnosed based on his clinical presentation and positive Lyme test results. The man was given IV ceftriaxone and two weeks later reported having no symptoms. It is not clear how often BWS occurs in actual practice with or without a confirmatory spinal tap.

All five 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. “2 patients developed visual disturbances and nerve root enhancement in the cauda equine 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 an LD-endemic region, should prompt clinical evaluation for LNB and assessment for BWS as this syndrome may be more common than previously presumed in North America.”

References:

  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.


12 Replies to "Six cases of neuroinvasive Lyme disease"

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

    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)
      Reply

      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.

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

    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)
      Reply

      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)
    Reply

    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!

  • Pam H
    08/06/2019 (6:49 pm)
    Reply

    My symptoms began with strange double vision, and nerve pain in my hands feet, including a burning /stabbing feeling at the bottom of the soles of my feet, all this one time for approximately two weeks. Now I have short term memory loss, inability to concentrate, letter reversal when spelling, extreme anxiety oh, a 40 pound weight loss, a 40 pound weight gain.
    I am thinking about being seen by Mayo clinic however I’ve heard negative reviews about them when testing for Lyme disease.
    I don’t know what to do because where I live all the Doctors and Hospital Systems I have gone to has dismissed my symptoms for psychiatric. I’m at a loss and want my life back…

  • China
    04/04/2018 (6:07 am)
    Reply

    Diagnoses around 1988 and treated with in three weeks of a tick bite. I thought I was cured after taking the RX. Forgot about it until two months ago while conversing with some they had told me they have Lyme Disease and I had mentioned that I “had” it. I was told to get a test from my PCP…tested positive 2018 and to Doxicycline for 30 days.

    Went for an eye exam and shared an temporary blindness in one eye for 2-3 mins. one summer day, passed out twice (hit my head on sink’s edge on my way down). Past vehicle accidents w/head injuries. Been experiencing migraine for five years straight which began after three car accidents (while sitting still). Past three months eye pain, headaches while asleep that awakes me.

    My eye doctor referred me to an opthamologist who then ref. me to a neurologist whom ref. me to a neuro-ophthalmology neuro-ophthalmologist for lumbar puncture to measure spinal fluids, conduct a brain scan for tumors, and to be treated for Psendopapilledema and papilledema to save me from blindness and brain damage.

    The right side of my right arm started swelling with pain daily for eight weeks and right hand swelling. Then my left leg began swelling.

    Do you think my issues favor Psendopapilledema or pappedilema symptoms? My neuro-ophthalmology appt. is four weeks away.

    • Dr. Daniel Cameron
      04/04/2018 (8:34 am)
      Reply

      I have often seen patients with a series of finding where a tick borne illness is a consideration. Your vision is a top priority and is being carefully evaluated. Your migraines, right arm swelling, left leg swelling, head trauma are additional concerns. There may be other issues you have not included in your notes. It would be reasonable to include an evaluation by a doctor familiar with tick borne pathogens.

  • Colleen
    03/14/2018 (4:35 am)
    Reply

    It bothers me they still.insist on spinal tap when the regular unintrusive blood smear does the same thing…

    • Ellen Boehmer
      10/04/2019 (1:03 pm)
      Reply

      …but the blood tests are not always positive. Mine were negative but lumbar puncture revealed the antibodies.

  • Kelly-Anne Bryan
    03/13/2018 (9:59 pm)
    Reply

    Yeah, I had same type symptoms, never recognized for what it was. It actually resolves and relapses. Pretty sure this is VERY common in Lyme.

  • TC
    03/13/2018 (12:34 am)
    Reply

    Quote- “… this syndrome may be more common than previously presumed in North America.” YA THINK? That’s why we call it Hold The Mayo! And they are just now figuring this out (or admitting it)? UGH!


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