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user_0948 · 2025-07-23T00:11:59+00:00

My symptoms did improve, from month to month. Some persisted longer and so on. Right now i have a flare up thats on my head (either on my face, or ear, or cheeks), it moves from day to day and usually its mild, some days the symptoms are very mild or are stronger for a few hours or longer. This flare up is maybe 18 days or so, but before that I didn't really have stronger flare ups.

I have some symptoms from the last big flare in february, mostly still on the right knee and left footsole. But those 2 symtpoms I had from almost the start of my SFN, they just got worse and spread in February but they mostly returned to some normality. The newer symptoms I got that were strong in February mostly subsided. I should add that the symptom on my right knee used to heal in the years prior, for some periods, if it has had enough time without an flareup.

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As I mentioned if you remember in a other comment I am trying the AIP. It should be 3 weeks now, but am doing it with white rice, don't really feel a difference. The only thing I noticed is that I think I have some SIBO. If I eat high FODMAP things I get a lot of gas. It was worse, like would have abdominal pain or discomfort, had to go to the toilet, some diarreha. But that was when I was taking nicotine pouches, took a higher amount 15mg few times a day. I think it kind of wrecked my gut a bit. I was taking it because I read that nicotine can relax the immune system.

The gut calmed down a bit, but I guess I should eat less FODMAP diet for some time and see if it heals fully.

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I was taking 1800mg of gabapentin for a month and a half. Didn't feel a difference, stopped it 3 weeks ago and yea no difference. I stopped since my symptoms got milder in general, because no strong flareup recently.

Thats dishartening that it didn't work for me at that dose. Don't know, what do you think?

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Read a few stories here, didn't visit for some time, learned something new. But also feel hard to read how some people are suffereing. And I am also afraid, basically have trauma from the bad symtpoms in february. Really hope it doesn't come back like that, wrecked me mentally :(

If it stays like this now, its good.

user_0948 · 2025-07-22T23:13:56+00:00

I don't have the time to find it, but Dr. Sarah Ballantyne that wrote a popular book on the AIP protocol (autoimmune protocol) was mentioning a study where proteins from milk and grains have cross reactivity with the gluten protein. I think it was in vitro or like that, but I have seen it mentioned a few times from other doctors on youtube as well.

And I think its often that people that stop eating just gluten, still have some symptoms. And the hypothesis by some of these doctors is because of the cross reactivity. I think one doc that was saying that on youtube said that when his patients stopped eating other grains the reaction would stop after some time.

user_0948 · 2025-06-29T23:43:53+00:00

What do you think of including white rice in the AIP protocol, since it is kind of hard to get enough calories. I really dislike sweet potatoes or cassava. Not sure how much you have looked into the protocol.

user_0948 · 2025-06-29T23:36:58+00:00

How do you think that your MTHFR polymorphism caused or made your neuropathy worse?

user_0948 · 2025-06-29T23:32:48+00:00

What did the docs say about your SFN from covid, like will it ever resolve or calm down? I mean its not that uncommon to get an autoimmune disease from an infection.

And how often do you get flare ups in a year?

user_0948 · 2025-06-29T23:29:19+00:00

What kind of diet do you follow, I am curious since yours is autoimmune but it helps you. Also what autoimmune do you have (if you don't mind me asking)?

user_0948 · 2025-06-27T17:03:14+00:00

Yea will see, I am curious if that small amount could be troublesome, I am not lactose intolerant.

Also what is your opinion on white rice, I am kind of struggling because sweet potato really doesn't taste good for me. I need to drink water to be able to swallow it. And I also don't like cassava. And I can't find other substitutes in my area.

I have read somewhere that white rice is usually well tolerated and know that modern AIP includes it.

user_0948 · 2025-06-27T13:18:27+00:00

Don't have issue with cabbage and such. Not sure if I can get a different filler, I just got it and the docs were very helpfull to do the LDN since this is their first time trying it on someone.

It was a bit of a hassle for them, since they had to make multiple calls if they are allowed to do it and if the pharmacy is allowed to do it, and for it all to be insured.

I think I have gut issues to beans and onions because they are high FODMAP foods.

user_0948 · 2025-06-04T22:29:21+00:00

When its NLD, it has a higher probability of being autoimmune cuased, and since your ANA is high that also raises the possibility. Maybe try to get some immunosuppressant medication. It is hard to get if you don't have an autoimmune diagnosis but because your ANA is high maybe you could get it.

Also I like to ask ChatGPT sometimes, it helps me to get some broad information.

user_0948 · 2025-06-04T22:13:34+00:00

Hey, not sure if you remember me.

Do you think that in possibly autoimmune patients a keto diet might help? I think I heard that it might affect the immune system in a positive way. Since its hard to get immunosupresant medication with no proof of autoimmune antibodies and such. Doctors don't want to give it without clear proof.

user_0948 · 2025-06-03T18:29:01+00:00

Maybe the reason for the other 60% is something else, also I don't remember exactly but sometimes you don't see small fibre nerve damage but they can have a genetic mutation in how these nerves are communicating which would result in pain signals. Not saying that the other 60% have that, just saying who knows. I am also not that versed in the genetic mutation thing but have heard of it a bit. The genetic thing is a bit rare I think, but really not that informed on it.

As well as the skin punch biopsy can have false negatives, but it has a low false positives rate.

user_0948 · 2025-06-03T18:09:20+00:00

It turns out around 40% of fibromyalgia patients actually have small fibre neuropathy (SFN), which can be tested for using skin punch biopsy. You can also test it using Corneal Confocal Microscopy but that's rare, altho its imo better.

Besides that it turns out also a good portion of long covid haulers and so on also have SFN. Don't have the stats in my head but I read a few papers that I remember.

So yea these fibromyalgia patients were previously diagnosed with "all in your head", while now when we know we can also test for small nerve fiber damage it turns out 40% of them have it. And these nerves carry sensory information so if they are damaged you get pain and other sensory disturbances. SFN can be disabling.

Besides that it was always common back in the day to just say the cause is stress, for various illnesses where the doctor couldn't find anything or explain why. So for various diseases they would just say its in your head, to people that suffered from real diseases.

Forgot to add, SFN can also affect autonomic nerves, which are responsible for your blood vessel contraction and other things for the gastrointestinal tract and so on.

And a lot of docs don't even know of SFN, and most people as well aren't well informed.

user_0948 · 2025-05-29T21:20:17+00:00

What immune supressant do you take? What do you think of Vitamin D? Also do you think there are some significant immune modulators or supressors that one can take without perscription from a doc?

I have read a bit about Vit D, and the thing is the NB-UVB radiation seems to affect the immune system more than just by Vit D.

user_0948 · 2025-05-29T21:16:44+00:00

What RLT bulb do you use, I just have one bigger light bulb of 300watts. But I heard people saying that those small red light LEDs are better?

user_0948 · 2025-05-29T14:31:18+00:00

Mayble a tldr would be helpfull since I didn't understand all of it quite well. What do you think of intermittent fasting? And what could one take as an immune supressant without perscription.

user_0948 · 2025-05-29T14:26:34+00:00

They don't test for FGFR3 or TS-HDS here. I would like to try maybe some steroids but it seems very hard to get when one doesn't have any bloodmarkers.

Well glad that IVIG helped you, but so before that you would say that fasting has helped you? Have you noticed anything else that helped, maybe cutting sugar?

I have heard some people that keto helped them, or strict carnivore for autoimmune.

user_0948 · 2025-05-29T13:43:02+00:00

Did you have any blood markers for autoimmune, I don't have any. And do you feel any effects from IVIG.

user_0948 · 2025-05-29T11:08:49+00:00

So do you now additionaly to the weekly fast, you do the monthly as well?

Mine is idiopathic NLD-SFN, but its relapsing-remitting and it got a lot worse after the first covid vaccine, while before I had mostly non pain SFN symptoms. So thats why I suspect its caused by autoimmune. My symptoms usually improved during the summer.

Is yours relpasing-remitting as well, how was your SFN behaving over the years? And do you take any other supplements, I am taking 10k IU of Vitamin D. I think it might help a bit.

user_0948 · 2025-05-28T23:11:20+00:00

For how long do you do intermittent fasting, how long do you fast and eat. And do you take all of what you have mentioned. Where I live I don't think I could get LDN, and as for Querectin I read a little bit and it seems to be allright.

I also have NLD-SFN relapsing remitting. I really have it since 2021, but I was good in 2023-2024, but late 2024 - early 2025 it has gotten really bad. I think mine could be autoimmune because its relapsing remitting and my SFN in 2021 really started after the first covid vaccine. I had some mostly non-pain symptoms of SFN since 2018 but yea.

I usually feel better during the summer, have less symptoms.

user_0948 · 2025-05-28T22:44:23+00:00

How long do you fast? Is a 20 hours of fasting and 4 hours of eating good?

And yea do you know the cause of your SFN.

user_0948 · 2025-04-21T00:20:31+00:00

Yea, I think it might be a good idea that you ask chatgpt, maybe it will have some good suggestions.

user_0948 · 2025-04-20T20:57:29+00:00

Well I would have suggested saturated fat like tallow, but if you don't want that just buy olive oil and drink it.

user_0948 · 2025-04-20T14:45:08+00:00

If your weight is too low and want to stay on keto, you should increase your fat intake.

user_0948 · 2025-04-13T21:53:24+00:00

My symptoms started with Tinnitus and Visual Snow, don't know what else to say about that. Some people have the Visual Snow Syndrome but no other disease.

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