HealingWell
Search Close Search
☰

Where can I find a Lyme Literate Neurologist ? Anyone seen one ???

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/26/2016 10:58 PM (GMT 0)
Need help with neuro symptoms weakness fatigue cog problems
Posted 5/26/2016 11:03 PM (GMT 0)
I have not read of one neurologist that even believes in lyme disease as a diagnosis for symptoms.

I think you are best off relying on your LLMD.

My neurologist left a bad taste in my mouth and cost me a lot of money for negative tests.

Maybe someone else has some positive things to say about them, but sorry, I do not.
Posted 5/26/2016 11:05 PM (GMT 0)
Hi Kct -

I'm not sure of the context for your idea to see a neuro but I'll start off with suggesting that you probably won't get very far with any neurologist. Even the lyme-literate ones. They just aren't equipped to treat the symptoms associated w/ lyme & co. But they do an important service for us by running the typical tests to rule out other issues. So not sure what your goal is.

That said, I don't know where you live but I LOVED my neurologist. He has several lyme patients so he "knew the drill". I didn't get far far with him - he did all the usual tests but we still can't determine why I get seizures and vertigo... but it was by far the most pleasant experience I've had with an MD. Email me if you'd like info.

-p
Posted 5/26/2016 11:07 PM (GMT 0)
"My neurologist left a bad taste in my mouth and cost me a lot of money for negative tests. "

UGGH. that's all I'll say.

-p
Posted 5/26/2016 11:09 PM (GMT 0)
And the sad part was that I asked him specifically if he thought it could be lyme disease. He had his mind set on giving me some other disease diagnosis, I just know it. lol

I am glad you like yours and I should not lump them all together. That isn't right, but dog gone it, I wasted a lot of time and money on his non-diagnosis.
Posted 5/26/2016 11:13 PM (GMT 0)
I think mine might be the only "enlightened" one on the face of the earth... LOL

Of course, he couldn't really help me, either. At least he was caring and interested (wants me to check in w/ him every 3 months). And his interns were also awesome. And he also seemed interested in learning more so if there is ever to be a neurological breakthrough about lyme & co, sx, or treatment I'd put my $ on him.

Wait - I take that back. He did diagnose significant hearing loss in my left ear... odd that it is one-sided. And I'm not surprised about it but I'm sure it's been since lyme & co reared its ugly head.

-p
Posted 5/26/2016 11:48 PM (GMT 0)
I just came back from Umass MS clinic. No change in MRI since 2012. physical exam negative. Told my neuro symptoms were from, I paraphrase "neuro system overload ".
Being that I am a PA-C I wanted to rule that out. He was so polite I couldn't ask him then then what the #@# is causing it and how do I get Better??? That being said I am only able to function because I take Nuvigil and Ritalin, which could be stressing my neuro system out as well. So now I am exactly where I thought I would be, still feeling burnt out physically with memory issues.

I thought a LL Neurologist might have an outstanding supplement regimen to get well again.
Posted 5/27/2016 4:29 AM (GMT 0)
I think I have a pretty bad case of neuro lyme too. It isn't fun. I'd have to agree with the common sentiment here regarding neurologists unfortunately.

The only thing I've found for temporary relief is Klonopin, but it has a bad reputation with people who have addictive personalities. I don't have an addictive personality, and never developed it as a crutch. It did help me during really bad lyme-neuro episodes, where I had to perform at work, but couldn't get to sleep the night before due to insomnia. The one side effect I did notice from it, was muscle twitching, which is a problem for lymies.
Posted 5/27/2016 1:00 PM (GMT 0)
I have an appointment in Boston next week with a Neurologist who is supposed to be Lyme literate; time will tell. He is a Harvard professor and specializes in Autonomic Nervous system disorders, which many Lyme patients have.

I will post how it goes agter the appointment. Let me know if you would like contact info.
Ed
Posted 5/27/2016 2:20 PM (GMT 0)
Oh Ed, please do keep us informed.
✚ New Topic ✚ Reply