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 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.

Study describes patients with Lyme disease presenting as Bannwarth syndrome. Click To Tweet

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 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 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.”

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.
Latest From the Lyme Disease Science Blog


23 Replies to "Six cases of neurological Lyme disease"

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

    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??

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

    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)
      Reply

      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)
    Reply

    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)
      Reply

      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.

  • Debbie
    09/07/2020 (3:47 pm)
    Reply

    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)
      Reply

      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)
      Reply

      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)
        Reply

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

  • Cevulu2@gmail.com
    08/07/2020 (1:22 pm)
    Reply

    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)
      Reply

      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)
    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!


Join the Lyme Conversation
(Note: comments are moderated. You will see your comment after it has been reviewed.)

Some html is OK