Small fiber Neuropathy and DSF.

My buddy did. He thinks it made him worse. There is a woman on the FB SFN group called Beverley Murphy who had bart and lyme and claims that DSF was part of her recovery tho.

You need to use IVIG tho, very hard to do wo it. Have you tried to get it? What are your other symptoms?

Sounds like it could be the start of SFN.

Who is your llmd and where are you located

There are so many things that can cause SFN. How do you know it’s bart? What was your lyme/co-infections testing like? Does it get better w treatment? Do you have any other Lyme symptoms? What was do your autoimmune panels look like? SFN is often caused by an immune system run amok. Whether or not it’s lyme amping up the immune system needs to be teased out

Hmm the symptoms all sound like typical dysautonomia/nerve issues outside of the night sweats. Night sweats makes you think babesia. And you’ve got the positive labs for lyme and bart. I’d try to treat them again, but I think someone else on here w more abx experience could advise you on how. I’d also try to find a neuro to prescribe ivig. Can help a lot w the immune dysfunction while you’re treating the bugs

I got SIBO af the beginning when I was having crawly sensations like you. Then after my SIBO got really bad my neuropathy exploded.

I’m not sure the abx caused the SIBO. I have it and had it years before ever trying an abx. Most people w immune mediated neuropathy have it. The story the dr will tell you is that you have sibo because the SFN screwed up your motility and caused it. I think the sibo ofren happens first in the neuro cases...gut dysbiosis is part of the trigger for the SFN.

I’ve found that a very strict ketogenic diet is one of the only things that helps my SFN. I’m glad you mentuiend the SIBO because given that datapoint, I’d guess a ketogenic diet would help you too. It keeps the bacteria numbers way down. I do like 20g carbs/day

I wish FB didnt suck so bad for finding posts. I know like dcd2103 said Beverley Murphy had great results with DSF taking it at a low dose for over a year. She did have quantitative tests done before and after treatment and there was damage done by DSF to her nerves per her neurologist. She claimed it was worth it to feel better from the Lyme symptoms. There were also individuals who had SFN who were totally messed up taking the drug and had severe regrets.

Just a note here: I can get waves night sweats and chills when my thyroid is low.

I have Hashimoto so I don’t know if regular hypothyroid does it or not people.

My gut has also been “slow” when my thyroid was low. T3 levels can be related to gut performance. This is more obvious when some Hypothyroid people who Are on a T4 only thyroid medication.

when these people switched to a combo T4 and T3 medicine their gut sometimes feels better.

Lifesux said...
You think my sfn is immune mediated? In theory, if I can get lyme/bart somehow cured, then sfn should heal? How bad is your sfn? Its not caused by lyme?

I would not do DSF personally, i think its too great a risk. I saw what happened to one of my friends. He was doing DSF and the neuropathy got much worse.

My SFN is/was very bad, probably much worse than yours from what it sounds like. Extreme burning, numbess on hands and feet, buzzing. I've gotten it under control healing my gut and using keto, and IVIG. I do not know if i still/ever had lyme tho. I do want to try treating w/ abx again, just to see. If you have an infection you have to treat it, but it sounds like you tried that. Sometimes w/ neuropathy it really can be hard to tell though, esp if your gut is messed up. Sometimes that can be the trigger. I'd try keto. If you can get IVIG it really helps.

But to answer your question, yes i 100% think your immune system is whats doing it. Lyme can trigger the immune system and make it attack the body. So can a whole bunch of other factors, like celiacs, screwed up microbiome, heavy metals. But it always comes back to the immune system. Your own body is what does it, not the bugs. This is why IVIG is important.

dcd2103 said...

Lifesux said...
You think my sfn is immune mediated? In theory, if I can get lyme/bart somehow cured, then sfn should heal? How bad is your sfn? Its not caused by lyme?

I would not do DSF personally, i think its too great a risk. I saw what happened to one of my friends. He was doing DSF and the neuropathy got much worse.

My SFN is/was very bad, probably much worse than yours from what it sounds like. Extreme burning, numbess on hands and feet, buzzing. I've gotten it under control healing my gut and using keto, and IVIG. I do not know if i still/ever had lyme tho. I do want to try treating w/ abx again, just to see. If you have an infection you have to treat it, but it sounds like you tried that. Sometimes w/ neuropathy it really can be hard to tell though, esp if your gut is messed up. Sometimes that can be the trigger. I'd try keto. If you can get IVIG it really helps.

But to answer your question, yes i 100% think your immune system is whats doing it. Lyme can trigger the immune system and make it attack the body. So can a whole bunch of other factors, like celiacs, screwed up microbiome, heavy metals. But it always comes back to the immune system. Your own body is what does it, not the bugs. This is why IVIG is important.

Did you ever do any testing for lyme? I had these symptoms long before my sibo happened. Yes, the herbal treatment was working well enough that I stopped.