Brain Edema, Lyme, ALS

Posted , 4 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion


I have somewhat recently been diagnosed with Lyme disease. I have been experiencing trouble with my gait. My latest MRI showed swelling in my midbrain.

I went and saw one of the nation's tip Lyme speialists. He said that I had some motor neuron involvement. I am scared that the Lyme infection is causing ALS. Could it be that the brain adema could be affecting my walking?

0 likes, 6 replies

Report / Delete

6 Replies

  • Posted

    Are you in the UK ? Was it an NHS consultant or one of many who make large sums of money from ones who may or may not have Lyme disease.

    Many medically ambiguous symptoms are being misdiagnosed with chronic Lyme disease and prescribed dangerous and often expensive treatments that do not work, according to reports. There have been reports of one practice charging patients up to £20K for their cures.


    Report / Delete
  • Posted

    I agree with what Derek said. But, also Lyme disease can mimic other disease as well and cause all sorts of symptoms and feelings. I suggest keep searching for doctors and try requesting a lumbar puncture(spinal tap) it could detect if the swelling in your brain is due to bacteria. Which could indicate it’s from Lyme and co infections or it could be some other infection attacking your brain. 
    Report / Delete
    • Posted

      If you were actually diagnosed with the term “brain edema” that means brain swelling which could be caused on meningitis, strokes, tumor, trauma etc. all which are pretty serious. And Lyme disease can cause Lyme meningitis. Did the doctor give antibiotics or anything for the swelling ?
      Report / Delete
  • Posted

    I definitely have Lyme. I remember the tick bite and rash. Plus I had Lyme positive bands on the western blot test. My neurologist ordered the test and the MRI. The MRI stated edema in midbrain. They are attributing this to the lyme.

    They put me in a pulsing antibiotic protocol of 3 oral antibiotics. I have been on for 3 months and my walking has gotten worse. So, I went and saw Dr Jemsek in DC. He believes there is motor neuron involvement. My tongue is asymmetrical as well. He said that even though there was motor neuron involvement, that it didn't look like ALS. He was happy that there has been mo muscle wasting or weakness yet.

    He recommends aggressive IV therapy. Unfortunately, insurance does not cover extended IV use. And this treatment would be for 7-8 months. We are talking around $50 grand.

    I have decided to visit Sanoviv clinic in Mexico. They have a pretty successful Lyme treatment focusing on detoxing, hyperbaric therapy, and hyperthermia treatments.

    I am wondering if the edema could be causing the motor neuron symptoms.

    Report / Delete

Join this discussion or start a new one?

New discussion

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up