Supplement ideas for neuropathy

[Mimicry]

Hi! I'm looking for ideas what to try next re: supplements for suspected small fiber neuropathy. I have had burning pain, buzzing and tremors in my hands, feet, legs and arms for a decade but it has become worse over the past couple years (perhaps due to covid). I had a skin biopsy taken on November but haven't got the results yet. I also had a brain MRI taken last March because of my chronic migraine but it was clear so MS isn't likely. I have been on pregabalin for back injury related pain for several years and it takes the edge off the pain and stops the worst paresthesias and shakiness but it's still miserable.

As for the supplements I'm currently on alpha lipoic acid 600 mg, riboflavin 800 mg (for migraines), benfotiamine 600 mg + thiamine 150 mg, N-acetyl glucosamine 700 mg, sodium butyrate 1000 mg, vit C 2x500 mg, vit D3 100 mcg, magnesium 500 mg. I've been taking this particular combo for a month now (riboflavin seems to help the migraines a tiny bit) but I've already been on benfotiamine, butyrate, NAG and vit C for 4 or 5 months and vit D + Mg for years. I've also taken alpha lipoic acid before for months at a time and a couple years ago it seemed to help my pain issues but not so much anymore. I've also taken L-carnitine, ALCAR, arginine, NAC, malic acid, tyrosine, Q10 (varying doses 150-1000 mg/day), NADH, PEA, fish oil, vit A, E and K, TUDCA, taurine, choline, BCAA's, L-theanine, B complex, 5-HTP, GABA, iron, lactoferrin, cumin and some other herbs. And I take salt water daily. There are probably others too, these are just on the top of my head.

As you have probably deduced by now, I'm getting a bit desperate. Any ideas what to try next? Any particular combinations of the already tried supplements that I should revisit? I'm in the same boat as most other ME sufferers in that many supplements work for a while, from a week to two months, and then stop working. I had a couple good short periods last year but they all dried up and now I'm in excruciating pain again. I'm planning to try a estrogen balancing supplement that I've been eyeing on iHerb because I'm pretty sure some of my problems stem from hormones but I have no idea if it will do anything for the neuropathy.

I still kinda wanna try because I have had good experiences with supplements before, but I'm wondering if it's time to stop trying them altogether.

 

[linusbert]

i dont read potassium, thats a important cofactor for thiamine. as is phosphor.

you already took choline, did you do egg yolks? i'd recommend 3-6 eggyolks a day for a while.

also glycine, like in bone broth.

also if its inflammatory, high dose vitamin D as part of the coimbra protocol assisted by a physician.

 

[Mimicry]

i dont read potassium, thats a important cofactor for thiamine. as is phosphor.

you already took choline, did you do egg yolks? i'd recommend 3-6 eggyolks a day for a while.

also glycine, like in bone broth.

also if its inflammatory, high dose vitamin D as part of the coimbra protocol assisted by a physician.

Thanks for the reply! Actually I have tried potassium too, I forgot that from the list. I took it for a couple years but I might need to try it again. I used to take glycine too but it did nothing. I need to read up on phosphorus! I was on keto diet for six months last year and ate eggs almost daily, but I'm afraid my neuropathy issues only got worse during that time (which is weird because keto actually cured my gastroparesis and fortunately it didn't come back after reintroducing carbs). Now I'm trying to get back on more plant-based diet due to ethical reasons.

I also forgot to mention zinc, I've been taking it for four months 15-25 mg a day and now I'm wondering if I'm copper deficient.

 

[Tsukareta]

My pet theory at the moment is when we are new to the illness or at our best, exercise generates ammonia either at abnormal levels due to the metabolic shift for unknown reasons, or normal levels of ammonia that our liver cant filter out properly, again for unknown reasons, when this builds up it causes us dizzyness and stuff which happens quickly and we have to stop exercising, if we keep doing it then it damages our nerves or brain and depending on what areas are most badly affects is what symptoms we get but the main one seems to be autonomic dysfunction of the blood flow system of the body which is what Systrom is studying. This happened to me this week and now I feel reluctant to leave the house and do stuff especially when its too cold.

If I can get back to my best then next time I try this exercise challenge I will try to take supplements that reduce ammonia buildup, slow release arginine and citruline is apparently good, something about nitrous oxide, also orthinine. I think it takes weeks for the nerves to heal. What keeps us from being at our best is going to be individual, I had a lot of stomach issues including SIBO and I was probably full of toxins, my liver probably wasn't functioning well and I was being affected by the mold in the air of my house. I had to rely on MMS / CDS and rife machine to detox this time because its winter and I am indoors, before I started that I was slowly feeling worse every day longer I spent indoors.

Edit - I wonder if PS, phosphotidylserine might help with your nerve issues, thats one I was taking for a while recently, supposedly it helps protect you against the effect of mycotoxins.

 

[Mimicry]

My pet theory at the moment is when we are new to the illness or at our best, exercise generates ammonia either at abnormal levels due to the metabolic shift for unknown reasons, or normal levels of ammonia that our liver cant filter out properly, again for unknown reasons, when this builds up it causes us dizzyness and stuff which happens quickly and we have to stop exercising, if we keep doing it then it damages our nerves or brain and depending on what areas are most badly affects is what symptoms we get but the main one seems to be autonomic dysfunction of the blood flow system of the body which is what Systrom is studying. This happened to me this week and now I feel reluctant to leave the house and do stuff especially when its too cold.

If I can get back to my best then next time I try this exercise challenge I will try to take supplements that reduce ammonia buildup, slow release arginine and citruline is apparently good, something about nitrous oxide, also orthinine. I think it takes weeks for the nerves to heal. What keeps us from being at our best is going to be individual, I had a lot of stomach issues including SIBO and I was probably full of toxins, my liver probably wasn't functioning well and I was being affected by the mold in the air of my house. I had to rely on MMS / CDS and rife machine to detox this time because its winter and I am indoors, before I started that I was slowly feeling worse every day longer I spent indoors.

Edit - I wonder if PS, phosphotidylserine might help with your nerve issues, thats one I was taking for a while recently, supposedly it helps protect you against the effect of mycotoxins.

Yes, the itaconate shunt theory that Ron Davis is working on postulates that our cells use amino acids for energy instead of glucose and fats because the citric acid cycle is blocked, producing ammonia. Ammonia also causes endoplasmic reticulum stress which would explain some other findings. But I'm not sure if that's happening with me because when I was examined for my ME diagnosis in 2020 they did blood gas analysis along with other tests and AFAIK excess ammonia would show up on that.

I need to try phosphatidyl serine too! I actually took it for a couple months three years ago, but I'm not sure if it had any effect on anything. I've been planning on trying it again.

 

[hapl808]

I still kinda wanna try because I have had good experiences with supplements before, but I'm wondering if it's time to stop trying them altogether.

I had good experiences with supplements when I was mild. Still suffered, but it helped. I'm not even sure I have good experiences any more. The supplements seem to help a bit as long as I do nothing. No phone calls, no cognitively challenging or interesting work, etc. So I do some supplements and feel slightly improved - then try to do a phone call and crash anyways. I'm only calculating if my crash is slightly less awful with my thousands of dollars of supplements.

So part of me wants to give up and just stop, then the other part of course is thinking maybe I'll order some Oxymatrine because even though ku shen didn't do much for me, maybe Oxymatrine will do something. My neck is stiff and painful (I had a phone call two days ago which triggered that) and I'm still fighting off a migraine despite my riboflavin and ibuprofen and all that. Overall, my effort seems pointless and laughable. Most people who spend 20 years studying something make a successful career out of it. All I got was a membership to the worst club ever - no offense to the other members.

Anyways, rough crash obviously - just getting them more frequently and lasting longer. Still not fully bedbound, but trying to figure out how that would work since I have no support and can't even have someone in my space for more than 20-30 mins without crashing.

 

[Mary]

@Mimicry - what about B12? Your symptoms sound very similar to what my formerly vegetarian sister had when she was deficient in B12. Her symptoms cleared up within a week after she started taking high dose B12. She doesn’t have ME/CFS, fwiw.

You’re taking a B complex but you very well might need more B12. And you also might need folate.

 

[Deer Fern]

@Mimicry I had a pretty big reduction in pain from small fiber neuropathy when I started taking L-citrulline (around 2 g once a day) and the flush type of niacin (50 mg twice a day).

 

[Mimicry]

@Mimicry I had a pretty big reduction in pain from small fiber neuropathy when I started taking L-citrulline (around 2 g once a day) and the flush type of niacin (50 mg twice a day).

Actually I have been taking those as well but not quite recently 😅 I have 500 mg capsules of flush niacin and I have trouble taking it because I need to take just a little bit of the niacin powder out of the capsule, and even then I get a very strong flush reaction. But I need to try it again! Thank you for the suggestion!

 

[Mimicry]

@Mimicry - what about B12? Your symptoms sound very similar to what my formerly vegetarian sister had when she was deficient in B12. Her symptoms cleared up within a week after she started taking high dose B12. She doesn’t have ME/CFS, fwiw.

You’re taking a B complex but you very well might need more B12. And you also might need folate.

Thank you! I've been suspecting I might need to try those again. I used to take methylfolate and B12 (methylcobalamin) on and off, the latest trial was a year ago (I think) and still have some B12 left over. My B12 pills are 1000 mcg, how big dose does your sister take?

 

[Mary]

Thank you! I've been suspecting I might need to try those again. I used to take methylfolate and B12 (methylcobalamin) on and off, the latest trial was a year ago (I think) and still have some B12 left over. My B12 pills are 1000 mcg, how big dose does your sister take?

@Mimicry - my sister - who does NOT have ME/CFS - took Now Foods Ultra B-12. It has 5000 mcg B12 in the form of cyanocobalamin, methylfolate and dibencozide, and also the other B's. Also, instead of folate, it has folic acid. So I don't recommend this for you or anyone actually but it worked for her.

Folic acid (as you probably know) is a synthetic form of folate and many cannot convert it into methylfolate, the form useable by the body. Folic acid can actually cause a folate deficiency.

Anyways, we're all different. Many people here are very sensitive to B vitamins and cannot tolerate large doses. I have taken 5000 - 10,000 mcg. methylcobalamin and done well with it. But for others that would be way too much. You might try the dose you took before and just see how you do. And I would take methylfolate as well and the only way I know to find the correct dose is to experiment. In general I start low and go slow, increasing the dose gradually as need be.

 

[Manjushri]

DLPA has purported analgesic effects, but I've never taken it for this purpose so cannot comment on that front.

 

[Judee]

Too tired to read the thread right now so pardon if someone already suggested Ginkgo.

I haven't taken it for a long time but it used to help me with neuropathy a bit as well as tinnitus and the internal tremors I get by the end of the day. I only would take a small pinch of it though. (Low and slow)

The other thing is I noticed you said PEA but what about luteolin (sp). I see there are combo formulas that include both.

Hope you find something.

 

[almost]

I used to take glycine too but it did nothing.

Hi @Mimicry, this isn't uncommon from what I've found. Glycine doesn't absorb well on its own; in things like bone broth (very high in glycine), it is bonded with other amino acids and supposedly absorbs better, which is why people respond better to to the broth. So, if you want glycine, I'd recommend some broth.

Edit: sorry I missed the fact you moved from keto for ethical reasons, so bone broth probably isn't what you want. I didn't find any plant sources that were similarly skewed.

 

[Lena9701]

Hi! I'm looking for ideas what to try next re: supplements for suspected small fiber neuropathy. I have had burning pain, buzzing and tremors in my hands, feet, legs and arms for a decade but it has become worse over the past couple years (perhaps due to covid). I had a skin biopsy taken on November but haven't got the results yet. I also had a brain MRI taken last March because of my chronic migraine but it was clear so MS isn't likely. I have been on pregabalin for back injury related pain for several years and it takes the edge off the pain and stops the worst paresthesias and shakiness but it's still miserable.

As for the supplements I'm currently on alpha lipoic acid 600 mg, riboflavin 800 mg (for migraines), benfotiamine 600 mg + thiamine 150 mg, N-acetyl glucosamine 700 mg, sodium butyrate 1000 mg, vit C 2x500 mg, vit D3 100 mcg, magnesium 500 mg. I've been taking this particular combo for a month now (riboflavin seems to help the migraines a tiny bit) but I've already been on benfotiamine, butyrate, NAG and vit C for 4 or 5 months and vit D + Mg for years. I've also taken alpha lipoic acid before for months at a time and a couple years ago it seemed to help my pain issues but not so much anymore. I've also taken L-carnitine, ALCAR, arginine, NAC, malic acid, tyrosine, Q10 (varying doses 150-1000 mg/day), NADH, PEA, fish oil, vit A, E and K, TUDCA, taurine, choline, BCAA's, L-theanine, B complex, 5-HTP, GABA, iron, lactoferrin, cumin and some other herbs. And I take salt water daily. There are probably others too, these are just on the top of my head.

As you have probably deduced by now, I'm getting a bit desperate. Any ideas what to try next? Any particular combinations of the already tried supplements that I should revisit? I'm in the same boat as most other ME sufferers in that many supplements work for a while, from a week to two months, and then stop working. I had a couple good short periods last year but they all dried up and now I'm in excruciating pain again. I'm planning to try a estrogen balancing supplement that I've been eyeing on iHerb because I'm pretty sure some of my problems stem from hormones but I have no idea if it will do anything for the neuropathy.

I still kinda wanna try because I have had good experiences with supplements before, but I'm wondering if it's time to stop trying them altogether.

I feel that using beam electrolyze minerals has probably helped mine. Before I added that I tried b vitamins in various combinations and they kind of helped, maybe? With the beam minerals on board taking b2 suddenly improved a number of things for me and also started setting off the potassium deficit symptoms at the same time so it seems fair to assume they are helping me to use b2.

I hope you find something that helps

 

[Mimicry]

A quick update, I added B12 (high dose, 1000-3600 mcg) + B9 + potassium to my supplement stack and the neuropathy has been much better - as well as my PEMs and muscle function. 🤯 I have no idea if they can start working immediately or if it's something else helping my symptoms. Either way, I hope the effect lasts!

 

[almost]

A quick update, I added B12 (high dose, 1000-3600 mcg) + B9 + potassium to my supplement stack and the neuropathy has been much better - as well as my PEMs and muscle function. 🤯 I have no idea if they can start working immediately or if it's something else helping my symptoms. Either way, I hope the effect lasts!

Glad to hear @Mimicry, and thanks for updating -- this helps all of us.

 

[Bluebluesky]

So cool that it helped!

Vitamin b12 can indeed help within as little 10 minutes. It does so for some, whereas it may take longer, even months for others.

I think I didn't see magnesium on your list? That may help for your chronic migraine. it did for mine. I can completely turn migraine off and on based om my intake of magnesium.

 

[Mimicry]

So cool that it helped!

Vitamin b12 can indeed help within as little 10 minutes. It does so for some, whereas it may take longer, even months for others.

I think I didn't see magnesium on your list? That may help for your chronic migraine. it did for mine. I can completely turn migraine off and on based om my intake of magnesium.

I do take magnesium too, I've used it for years. It used to help my migraines in large doses (500 mg twice a day) but the effect didn't last and now it doesn't effect my migraines in any way.

 

[L'engle]

then try to do a phone call and crash anyways.

Phone calls are incredibly draining.