Did anyone ever have body wide neuropathy with Bartonella?

I have burning pain in almost every area of my body: my head and neck, my back, my hips, my arms and legs, hands and feet, my male body parts.

I experienced an increase of neuropathy in 2020 when taking disulfiram. I think it was a combination of DSF and Bart, or just Bart.

Never quite this bad. I guess I’m just wondering for the extreme Bart sufferers, if they experienced this “burning” pain everywhere…

I had burning/nerve pain every day for a very long time long time. (Years)
For some reason it was mild in the morning and got worse as the day went on.

I didn’t have fatigue (which is very common with Lyme patients) but boy did I have pain.
Along with the nerve pain (it started at the top of my left side and went down my arm and hand), I also had a problem sitting. The tail bone hurt.

My left pointer finger is smaller than it was prelyme - nerve damage I guess.

Now my pain is gone. The left pointer finger is slightly numb.

Girlie said...
My left pointer finger is smaller than it was prelyme - nerve damage I guess.

Now my pain is gone. The left pointer finger is slightly numb.

That is strange. My left finger is also smaller. I'm not sure if it was always that way, or this is atrophy from Lyme. I don't have any permanent nerve damage there. It sometimes was a little numb when herxing, but I seem to have gotten the bacteria out of my fingers now. Shoulder is still a problem.

My feet definitely got smaller with Lyme treatment. I noticed this because I had to buy smaller shoes. That was clearly because of joint swelling from Lyme.

I also have neuropathy in my whole body. I feel burning pain, mainly in legs, arms and head though sometimes in chest and back. The particularity of my neuropathy is that it is usually low but it skyrockets when I take abx, being the worst the ones for borrelia. My understanding is that there is some sort of molecular mimicry and, whenever I kill something, my immune system attacks what it shouldn't, in my case my small nerves.

I've managed to control it by using cyclosporine, a calcineurin inhibitor that acts on T cells, I have to take it while on abx to be able to treat; otherwise I can't. Right now I'm on a break after a flare that I had, waiting for the neuropathy to go down so that I can continue treating.

I just hope that those of you who have neuropathy can continue treating without the need to take some kind of immune suppresor, because it's a pain in the butt.

MedicalNerd said...
Yes, especially my brain, scalp, head. Drove me crazy and gave me even more anxiety

i had all the same pain and also especially a lot of nerve pain going down into my nose. doesnt sound very bad but it really was quite an ordeal having horrible aching down the nose for 5+ years...