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Does bartonella neuropathy go away??

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Posted 7/25/2014 2:50 PM (GMT 0)
I've had burning in my thighs and legs now for 8 months. It was getting better during the first few months of treatment, but as soon as I increased my antibiotics it got much worse. My llmd now suspects bartonella.

I've been on rifampin for 5 weeks now and the burning in my legs is actually worse and now it has travelled to other places. I'm taking neurontin 3/day which is not helping. I'm detoxing as much as possible.

Every morning it wakes me up and seems to get better when I start my routine but then returns off and on throughout the day. Sometimes it's so bad I want to die, other times it's just a small sensation.

I'm seeing my neurologist in a couple weeks to see if he can do a skin biopsy to test for small fiber neuropathy. I REALLY hope it's not permanent nerve damage. I miss being active and happy and can't imagine life with this burning pain.

Has anyone had this go away with treatment?
Posted 7/25/2014 3:23 PM (GMT 0)
No but I have the same pain, except it's in my mouth and there is nothing I can do for it. Mine never stops, it's constant.

My doc says Bart, but none of his patients have had this same issue, especially with their mouth.

Mine started with treatment.

I do have it all over my body, but it's not as bad as my mouth.
Posted 7/25/2014 3:47 PM (GMT 0)
So sorry Lousie74!!

Wishing you relief soon :)
Posted 7/25/2014 3:53 PM (GMT 0)
I'm getting treated now, so don't know if symptoms will all go away but know that when I started treatment, my symptoms intensified for a good month and a half at least. I guess its sort of like a herx. I would think once you get through the "herxing" phase, symptoms should start to subside. My mental symptoms got really bad at first with treatment and now have subsided some. On a really bad, I did the Epsom salt and hydrogen peroxide bath and that helped so much!
Posted 7/25/2014 4:10 PM (GMT 0)
Thank you Inspiredby3 :)

Detox baths definitely help, I agree!
Posted 7/25/2014 6:02 PM (GMT 0)
I have neuropathy on my tongue in my ears and my feet and hands. It was BAD in the beginning and is why I sought out help! After a year of treatment it comes and goes in small amounts but nothing like it was! Don't give up there IS hope!!

I ended up with a biopsy and had small fiber neuropathy. But still no one considered Lyme/Bart until I found my llmd.
Posted 7/25/2014 7:06 PM (GMT 0)
Thanks Sickiam :)

Glad you're doing better!!
Posted 7/25/2014 8:51 PM (GMT 0)
Almost all of my nerve issues have resolved - still have some numb spots on my skin, a bit of tingling can still happen - but overall, things are pretty good. Remember, I had my infections for 40 years undiagnosed and I am now 3 1/2 years past the end of my Lyme & Bartonella treatments.

Nerves can take up to 7 years to regrow when damaged too badly to heal, so give it some more time.
Posted 7/25/2014 9:20 PM (GMT 0)
Thanks traveler, as usual :)
Posted 7/25/2014 9:46 PM (GMT 0)
I hope that it helped. I also hope that you heal at least as well as I have from all of this!
Posted 7/31/2015 9:14 PM (GMT 0)
Joey. I too have the neuropathy and you described it well. Some moments feel like i want to shoot myself. Sickiam can you elaborate a bit on your story? Did you have severe neuropathy that dissipated slowly with time? I am still waiting to start my treatment but have been detoxing and taking samento and banderol in the meantime. I am praying the antibiotics will at least help somewhat over time as the neuropathy can be literally anywhere and is so painful.
Posted 7/31/2015 11:26 PM (GMT 0)
The others might see this and still post, but this thread is a year old and I think I"m the only one that is still here, though. Just wanted to let you know.
Posted 7/31/2015 11:38 PM (GMT 0)
Oh, no wonder the names didn't look familiar.....

Well, I was going to say that my neuropathy has gotten much much better...yes, slowly over time.

I remember my feet burning tingling buzzing, red and purplish...my left arm was the same....sometimes sooo painfully cold I'd wear socks and arm warmers-even in the summer....

Now, everything feels normal with a slight tingle sometimes and the color is normal...little bit of red, but wow, what a difference!
Posted 8/1/2015 12:12 AM (GMT 0)
Same here Candle - my neuropathy has pretty much disappeared - even after having Lyme & company for 40 years.
Posted 8/1/2015 12:19 AM (GMT 0)
I have everything described ie: the red/purply feet, the icy/burning cold sensation, buzzing numbness. LLMD says poss Bartonella (Clinical dx)-- of course neuro says "MS" LOL

Lordy I hope once I get back on the abx this can be beaten..., detoxing LOTS too....
Posted 8/1/2015 1:21 AM (GMT 0)
Thanks Traveler and Alimom. You know I spent the first 2 months down the idiopathic small fiber neuropathy path which meant no clue what is causing your random all over tingling, burning, shooting pain etc until I found this site and starting piecing the puzzle together. I am 39 was in great health and then bam this happens. I have to say hearing that this nerve pain can remit over time is exactly the type of encouragement I need right now. I am very grateful that in spite of being healed from Lyme, you come back to this site and help so many people with your stories. I am 5 months into what I can only describe as the biggest most hellish challenge of my life and if and when I do heal, I fully plan to help all the poor lost souls who are told there is no hope but to pray things get better. Thanks again! Will keep you posted on my case...
Posted 8/1/2015 1:24 AM (GMT 0)
And sorry a thanks to candleinthewind.
Posted 8/1/2015 11:32 PM (GMT 0)
That's why we stick around - we understand!! I'm just glad that we were of help to you!! For most people this is the biggest challenge they will ever face, and likely the most scary, since there is such controversy over every thing.
Posted 11/1/2016 6:00 PM (GMT 0)
Hi Everyone. I have full body small fiber neuropathy symptoms, which started slowly, then spread rapidly throughout my body. My worst body parts are my face, arms, back, and feet. This was likely an autoimmune reaction from Lyme/co-infections. My Lyme treatment was started 1.5 years after my acute SFN symptoms started.

I've heard over and over from many prominent LLMDs that the only way to repair this is IVIG. However, insurance will never approve IVIG for this reason.

Is there anyone who has improved neuropathy symptoms? What helped you the most?
Posted 11/1/2016 6:11 PM (GMT 0)
So is your neuropathy burning? Mine is numbness - similar spots as you but originally entire body. My doc mentioned ivig too, but since it is more come & go now I'm hopeful it will eventually just go!

Also if you feel strongly that it is autoimmune than you could look into LDI (low dose immunotherapy).
Posted 11/1/2016 6:14 PM (GMT 0)
Hi madisongrrl - welcome to our community!

I'm sorry you suffer from the small fiber neuropathy. How would you describe it? I have nerve pain...but not sure if it's sfn.
Mine isn't constant 24/7 - though, I have days where it's gone most of the day.



How long have you been treating? Do you have other lingering symptoms?
Is it not plausible that it will eventually go away, once the infections are in remission?

We encourage all new members to take a look through the "New to Lyme"..Start here!" thread at the top of the page...there's a lot of useful information there....

Do you have a good detox regimen going?
Posted 11/1/2016 6:27 PM (GMT 0)
Nerve pain is the worst. If I could eliminate 1 symptom it would probably be this.
Posted 11/1/2016 6:32 PM (GMT 0)

AzerilA said...
Nerve pain is the worst. If I could eliminate 1 symptom it would probably be this.

me too! I'll trade it in for the joint pain I had ... any day!
Posted 11/1/2016 6:54 PM (GMT 0)
Hi Madisongrrl!
Welcome to our community! I'm so glad you found us.

I have the same issues, as well as many others. The burning nerve pain is hard to deal with once it gets intense. This is actually very common with Lyme, but it's not from an autoimmune issues that's been set off, but from myelin sheath damage. The myelin sheath is the protective coating that covers the nerves and Lyme destroys the myelin sheath in small areas at a time, but if it's left untreated long enough, you will end up with nerve issues throughout the body due to the progression of Lyme.

Myelin sheath damage can be healed by using Lion's mane as it's been shown scientifically to repair the myelin sheath:
www.ncbi.nlm.nih.gov/pubmed/12675022

www.livestrong.com/article/509385-lions-mane-mushroom-for-nerve-damage/

Although I healed a good majority of my nerve damage without using the Lion's mane, now that I'm reinfected, I fully intend on using Lion's mane this time around!
Posted 11/1/2016 8:06 PM (GMT 0)
I jjst posted about this ..and asked my friend she said ivig did nothing for it ...and her insurance did cover it ...
Is a biopsy even worth it ?..
One guys neuro said if there is wasting then more than 1/2 the nerve is dead ...
i have seen my twitching almost stop with bvt ,iv mag ,iv phosphatydlycholine iv ala and b12 shots ..high dose biotin ,higjdose royal jelly ,lions mane and of course treatment...burning hands has almost stopped with iv rocephin and zith with above ...i blame bartonella
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