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Posted 3/16/2019 3:26 PM (GMT 0)
Hey!

I have read through a bunch of your posts and I have the same twitching, buzzing, vibrating as you. Just had a positive bartonella and 4 bands on western blot. about to start treatment, never bothered with conventional doctor, going with mc-bb-1 and mc-bar-1. Just wondering, how are you doing now? Have those nerve related symptoms gone away? I’m just at the start of this and it’s sometimes hard to believe that it’s just from the Bart/Lyme and not something else.

Any advice? Hopping you’re happy and healthy now!!!
Posted 3/16/2019 6:11 PM (GMT 0)
Hi Christinety - Welcome to our community!

I was diagnosed after 14 months of symptoms - many symptoms -

I treated with a LLND for approx 2 years - lyme and Bart.. but I plateaued and he didn’t offer anything more - no Babesia meds.
After the 2 years I tested positive for bart via pcr test.. that was confirmation that the treatment wasn’t totally effective - PLUS I still had quite a few symptoms.

I self treated for a year + and then last year started going to a LLMD in Washington DC
I have made some progress since going there. But still not symptom free.

———————————————
The twitching (fasciculations) subsided and the buzzing that I had mostly in my right leg is about 90% better.
The vibrations - I don’t really have them anymore - they were affecting my upper back/ torso BUT I do have nerve pain in that area now.
I also have shivering episodes - that happen when I’m affected emotionally and also sometimes randomly. Maybe they’re adrenaline rushes - not sure.

I have whittled down my list of almost 40 (high 30’s) symptoms to less than 10.

In order of severity

- nerve pain - upper back, left arm and hand
- shivers/chills
- some head pressure - sporadic
- memory - about 70-80% better
- POTS
- muscle loss - maybe it’s never
coming back
- occasional left rib pain
- foot pain in the morning


Maybe a few more
Posted 3/16/2019 6:54 PM (GMT 0)
Hi Girlie,

Thanks for the reply smile well I’m happy to hear you’ve whittled it down to a small list of symptoms....

So happy to hear the twitching has calmed and the buzzing and vibrations are almost gone as well.

I’ve read that symptoms go away in reverse order so maybe I’m stuck with the twitching and buzzing for a while. I hate it.
Posted 3/29/2019 4:47 PM (GMT 0)
Hi Christinety - I missed that you had replied to my post.


I'm wondering as well about the first one .... will be the last one to leave.
So far it seems like that could be the case with me.


Just had a really good appt. with Dr. j in DC.
Posted 3/30/2019 5:09 PM (GMT 0)
Girlie I feel like I’ve read a lot of your posts and you’ve mentioned dysautonomia? I could be thinking of another member. I’m curious as to Dr J’s thoughts on this. Should these improve with Lyme treatment or have you considered seeing a separate doc for support?
Posted 3/30/2019 6:06 PM (GMT 0)
Dr J and I haven’t discussed my POTS - I think because it’s not one of my worst symptoms.

But at each inperson appt the PA tests my pulse and BP sitting and then again standing.
My numbers weren’t too bad this last time.

It does seem to be improving lately.

I know Dr H (in an article) said that it may or may not improve.

Maybe my next appt in six months I will ask about it.

I’ve not seen another Dr about it.. but I have read that exercise helps so I try to keep that up.
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