My Lyme/bart symptoms have been primarily neurological (along with fatigue and some pain).
Mostly it's word finding, writing, speaking. Lately I've had two bad "episodes" that I think might be simple partial seizures.
The other night I forgot how to climb stairs. I just couldn't figure out how to do it.
And then I had a very bad word night. I could see words typed out in my head, but could not speak them. Amusingly enough, in an academic "meta" kind of way, I forgot the word for "word."
Then I discovered that while I couldn't speak English, I could still speak in broken French (from my college days).
Unfortunatley, my husband doesn't speak French, so it wasn't much help. (We got a good laugh out of this.)
During both incidents, it felt like this energetic electrical storm in my brain. And afterwards, I was very tired and groggy.
I am fairly certain that this is Lyme (and possibly herx) related.
I have a good LLMD and we are working on treatment.
So is there any point in seeing a neuro? (There is a Lyme friendly, but not literate, neuro in town.)
While it would be interesting on an intellectual/curiousity level to see what's actually happening neurologically, I don't know if it's of any benefit. (Other than curiousity.)
My insurance is good and very happy to pay for specialists and conventional (read: non-Lyme) tests, so money isn't a problem with this issue.
Thoughts?
Thanks, AnnaL
Posted by Peedie (Member # 15355) on :
ask your LLMD if he/she works with a neuro. They often do have association with a neuro who is Lyme educated. Otherwise I fear you will simply be processed to Lyrica or Neurontin.
I think if you have not had a brain MRI you should get one. Your PCP should be able to process this request through insurance just based on your symptoms - without regard to Lyme as a possible cause. -p
Posted by AnnaL (Member # 18464) on :
I was on Neurontin for a few days---until it make me hallucinate! Fun fun fun!
(Luckily, my college days involved a fair amount of drug dabbling, so it wasn't scary at all. Just interesting.)
I haven't had an MRI or any sort of scan. That's kind of what I'm curious about. Would having an MRI to look at be helpful in any way?
I'd certainly like to see a picture of my brain, because I'm a total nerd and interested in stuff like that.
But is it additionally helpful beyond my nerd curiousity?
Maybe with insurance or other issues down the line? Or just in later Lyme advocacy? (Like to prove that it did physical stuff to my brain?)
Thanks for your thoughts...
-AnnaL
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Posted by Peedie (Member # 15355) on :
I can't answer your questions concerning how the MRI may help you with the insurance people.
I have read that the white matter will go away with treatment and health restored.
I think the staff at your LLMD office may be able to answer your other questions? -p
Posted by nwisser (Member # 15682) on :
Have you tried the Buhner protocol? You might herx a lot, especially on the andrographis, but it seems to address some neurological stuff.
It gets rid of stuff like filarial worms, which are in tick stomachs but aren't always killed by antibiotics.
My mental function improved tremendously after that protocol although I was just doing it because of arthritis.
I don't think people realize how many other things ticks carry n their bellies besides the obvious things like Lyme, bart, babs, and ehrlichia.
Probably a lot of what people think of as lingering Lyme is due to the long-term effects of other, slower-acting organisms.