Post your current ME/CFS supplement stack and what you're thinking about next.

[Nacht Segler]

Give it a try for a few months??

(Somewhat off topic, but I didn't get the email notification for this response. Got the others, but only found out about this from reading the other responses.🤨)

 

[triffid113]

These two interest me in particular -

The NAC, I wonder if it would help alongside the Glutathione that I am taking.

The Benfotiamine I wonder if it would help the damage my nerves went through (years ago) with sciatica, but also help the damage that happened to my brain.

Um, be careful... a lot of people priory on here sa0id NAC caused them to have some kind of huge energy relapse (I can't remember the buzz words, sorry).

I am getting on to wonder / suggest if anyone tried benfotiamine... which is some kind of stay-in-your-system longer form of thiamine (again, buzz words escape me). I looked it up and find an article which states: "By way of its necessity for enzymes at the entry points to, and at critical junctures within the mitochondria, thiamine availability dictates molecular oxygen homeostasis and mitochondrial ATP production. " etc, and makes a cogent case for widespread insufficiency.

Here's the article: https://www.mdpi.com/2073-4409/10/10/2595
It's called: Hiding in plain sight: modern thiamine deficiency

Ever since I had covid, I have had significantly less energy. I feel like I am not fully digesting my vitamins which are supposed to beat back these and other symptoms. One key for me is eating insoluble fiber (cellulose) every day and, it seems, also acetic acid (kombucha). I know (from having had a painful hernia) that soluble fiber doesn't do a good enough job cleaning my colon...nothing but cellulose does (lettuce). So I thought maybe the vitamins couldn't get to the gut walls to be absorbed. But these symptoms require more...also some firm of acetic acid, which is a short chain fatty acid (scfa) which feeds good microbiota which help absorption. Also adequate hydration, cuz you can't absorb substances if the osmotic pressure isn't right.

But I also recently read an article on benfo5iam8ne and thought I'd give it a try. I feel like I've tried a lot of half-assed things because - um - tired. Gotta give it all a try.

Just thought I'd put out a few things that might help. I follow Freddy's protocol... not to a tee, but in essence, and it does work for me if I can absorb the stuff. Or it did. It seems like as I get older I constantly have to figure out a better protocol to meet the changes.

 

[triffid113]

Um, be careful... a lot of people priory on here sa0id NAC caused them to have some kind of huge energy relapse (I can't remember the buzz words, sorry).

I am getting on to wonder / suggest if anyone tried benfotiamine... which is some kind of stay-in-your-system longer form of thiamine (again, buzz words escape me). I looked it up and find an article which states: "By way of its necessity for enzymes at the entry points to, and at critical junctures within the mitochondria, thiamine availability dictates molecular oxygen homeostasis and mitochondrial ATP production. " etc, and makes a cogent case for widespread insufficiency.

Here's the article: https://www.mdpi.com/2073-4409/10/10/2595
It's called: Hiding in plain sight: modern thiamine deficiency

Ever since I had covid, I have had significantly less energy. I feel like I am not fully digesting my vitamins which are supposed to beat back these and other symptoms. One key for me is eating insoluble fiber (cellulose) every day and, it seems, also acetic acid (kombucha). I know (from having had a painful hernia) that soluble fiber doesn't do a good enough job cleaning my colon...nothing but cellulose does (lettuce). So I thought maybe the vitamins couldn't get to the gut walls to be absorbed. But these symptoms require more...also some firm of acetic acid, which is a short chain fatty acid (scfa) which feeds good microbiota which help absorption. Also adequate hydration, cuz you can't absorb substances if the osmotic pressure isn't right.

But I also recently read an article on benfo5iam8ne and thought I'd give it a try. I feel like I've tried a lot of half-assed things because - um - tired. Gotta give it all a try.

Just thought I'd put out a few things that might help. I follow Freddy's protocol... not to a tee, but in essence, and it does work for me if I can absorb the stuff. Or it did. It seems like as I get older I constantly have to figure out a better protocol to meet the changes.

Freddd protocol, sorry, spellcheck

 

[Nacht Segler]

I'm going to just add this, at least for now, since I am giving collagen a trial run.

I picked up some from the discount store where I shop a lot as it was cheap and being a creamer, I could get it with food stamps.

I use it in my adaptogen coffee with a bit of my vanilla amond creamer, and it tastes pretty good since the collagen is also vanilla flavored. I got 5 containers of the stuff, so at least a few months worth. I use it generally twice a day - in the morning and at night when I have the Ashwagandha "coffee". When that runs out, I have Vanilla decaf I can put it with at night.

I've also been doing some minor tweaks to my diet:

Switched to Aldi's Coconut milk as it has less sugar than regular almond milk and, I love the flavor.

Switched out cream cheese on my whole wheat bagels for my plant based spread and preserves.

Cutting back on the dairy severely really seems to have helped (along with the refined and added sugars and refined wheat products).

 

[triffid113]

Give it a try for a few months??

I had sciatica and treated it every day 2x/ day with dmso... no damage. I didn't know it could damage? My Dad had Bells palsy, which I suppose is same thing, different nerve. It did damage him though...resulted in a crooked smile (they had no drugs for it then and treated it with high dose zinc.


This worked for me: Trace the nerve, hip to heel, with DMSO on CLEAN, NAKED SK8N (no clothes, lotions, perfumes). Wait 10 minutes to absorb. Then the pain should be dialed down enough to feel the pain in the tributary nerves. Trace them with DMSO. Wait 10 minutes or until the skin doesn't feel tacky. Dress. Repeat morning and evening until better.

The first time it had never happened to me before and I started DMSO too late...it took a month to banish. It happened 2 more times and each time I banished it in a few days because of heading it right off with DMSO.

I also treated tendinitis with DMSO to good effect..Anytime I have inflammation I pull out the DMSO.

 

[Nacht Segler]

I had sciatica and treated it every day 2x/ day with dmso... no damage. I didn't know it could damage? My Dad had Bells palsy, which I suppose is same thing, different nerve. It did damage him though...resulted in a crooked smile (they had no drugs for it then and treated it with high dose zinc.


This worked for me: Trace the nerve, hip to heel, with DMSO on CLEAN, NAKED SK8N (no clothes, lotions, perfumes). Wait 10 minutes to absorb. Then the pain should be dialed down enough to feel the pain in the tributary nerves. Trace them with DMSO. Wait 10 minutes or until the skin doesn't feel tacky. Dress. Repeat morning and evening until better.

The first time it had never happened to me before and I started DMSO too late...it took a month to banish. It happened 2 more times and each time I banished it in a few days because of heading it right off with DMSO.

I also treated tendinitis with DMSO to good effect..Anytime I have inflammation I pull out the DMSO.

I'm guessing your response is mainly for me so I'll respond -

I don't have sciatica anymore. I haven't had it since about the mid-2000s. Somehow it just worked itself out while I focused on my inner work with essences, and used arnica gel for trauma, and pain relievers (rx Ibuprofen was what I can recall being my last one). I was also using essential oils as well to help with "calming things down" (oils like lavender, frankincense, chamomile, and sandalwood for example). The supplements that I can recall using at that point were mainly the magnesium-malic acid blend capsules.


However, I mentioned the brain damage as when I saw a neuropsychologist in 2007, and took their tests, they determined that I had medium range damage to my brain.

I haven't been back since to see if there's been any change or if by the mix of things I have been doing, managed to help re-wire my brain (along the lines of neuroplasticity). I also don't know at this point, if any issues I have are from that damage or now more so from the "brain fog" crap. I don't know if it's possible for me to distinguish between the two when it comes to things. I will note that the brain damage was focused on fine motor skills, and not cognitive function - so perhaps some sort of demarcation can be drawn. I don't seem as bad as I used to be with the fine motor skills, but the "brain fog" stuff...🤦🙄 I seem to have my moments with it. This body's brain is processing quite a bit and on more than just the "physical level" (everyday awareness level). I tend to feel like I am constantly running a defragmentation process in my mind.

 

[triffid113]

I'm guessing your response is mainly for me so I'll respond -

I don't have sciatica anymore. I haven't had it since about the mid-2000s. Somehow it just worked itself out while I focused on my inner work with essences, and used arnica gel for trauma, and pain relievers (rx Ibuprofen was what I can recall being my last one). I was also using essential oils as well to help with "calming things down" (oils like lavender, frankincense, chamomile, and sandalwood for example). The supplements that I can recall using at that point were mainly the magnesium-malic acid blend capsules.


However, I mentioned the brain damage as when I saw a neuropsychologist in 2007, and took their tests, they determined that I had medium range damage to my brain.

I haven't been back since to see if there's been any change or if by the mix of things I have been doing, managed to help re-wire my brain (along the lines of neuroplasticity). I also don't know at this point, if any issues I have are from that damage or now more so from the "brain fog" crap. I don't know if it's possible for me to distinguish between the two when it comes to things. I will note that the brain damage was focused on fine motor skills, and not cognitive function - so perhaps some sort of demarcation can be drawn. I don't seem as bad as I used to be with the fine motor skills, but the "brain fog" stuff...🤦🙄 I seem to have my moments with it. This body's brain is processing quite a bit and on more than just the "physical level" (everyday awareness level). I tend to feel like I am constantly running a defragmentation process in my mind.

Well...brain fog may be related to thyroid. If TSH > 2.0 you get progressively worse symptoms. My TSH hovers just above 2.3 and I don't have brain fog, but my TSH has been as high as 5.5 due to seasonal allergies (after a few months of allergies my thyroid wears out). If TSH gets close to 3, by then I get symptoms. I take thyroid supplements for this....my thyroid can do the job with extra nutritional help to meet the elevated demand. I do not know what else may cause brain fog but suspect (maybe I read so.ewhere?) It could maybe also be caused by inadequate methylation. You can check with a (relatively) inexpensive homocysteine test. Life Extesion used to say this should be 6.3. I have to take a lot of supplements to get mine that low, so have decided to be happy with 9.0. (I think lL.E. may now say 8 is good). To get mine In the ballpark I have to take TMG also. So... when I started Freddds protocol (before this forum), I usedto take those sublingual mB12, which brand at the time, was B Right. As well as Thorne's Basic B (which I still take) , an additional mfolate (various brands), and TMG (I started with higher dose). Please understand this is NOT my protocol because I take many other supplements and they all play a role... I have no idea what taking a few supplements here and there does to you, if you have some unknown deficiency, nor what drug interactions there might be. However, for this PART of Freddds protocol (+ TMG - not sure if that was from him) I tested high in cobalt- thus I discontinued the extra B12 and rely simply on Thorne Basic B (and a multi with active B - so I get small doses of active Bs 2x / day), 1g TMG, and 50mg P5P. I take the extra P5P to protect my kidneys but it will also improve methylation.

ALSO. I want to say I've been taking high dose B vitamins all my life to attempt to fix some kind of lifelong malaise. It didn't work but I felt it was directionally correct if I could find the missing potentiating element(s). I encountered periodic low potassium but not severe because I cannot break down many non-active b's, but my Dad was a diabetic and he gave me potassium when that happened (low dose).. I have slow kidneys because of my blood pressure, so I would not at all recommended potassium without knowing the status. But I came to this with a large protocol and most pieces of it already implemented so... never had to titration low doses or experience major jolts to my system tweaking my protocol like many here. Each person has to find their own way.

But I was raised with nutritionist Adele Davis, with the multivitamin generation, and I strongly believe in making sure all bases are covered with a multi. I f something is directionally correct but doesn't do the trick for me, I don't discard it. I think that metabolic processes take many nutrients to work and maybe I am still missing one I am unaware of.

So, for instance, I took uubiqinone for years, then tested low in it. How could this be? I switched to ubiquitol, the active form, then later discovered if your thyroid is not up to snuff you will have a hard time transforming ubiquinone to ubiquinol. There is usually a key - something not quite right about your protocol. In some cases close only counts in handgrenades...but in many cases I don't believe that. So a lagging thyroid can prolly convert SOME ubiquinone to ibiquinol, for instance. In any case, my best guess protocol that changes over time has kept me alive all my life.

I don't remember all the things that affect methylation besides B, and no doubt new ones were discovered. I believe D, some minerals, and antioxidants were also important, perhaps others. Antioxidants are always #1 to me. I have taken my whole life 2g mineral ascirbates (C), 1 g E, and later also 1g Olive LeF extract (ACE inhibitor), and 1g? Astaxanthin (I'd have to check that dose - it's from NOW). This very much also saved my kidneys from genetic high blood pressure. I hear you can over anti-oxidant. I don't think I do FOR ME. Everytime your immune system comes Into play, which includes allergies, sports,etc), you need serious antioxidants. I have noticed little cuts or abrasions hurt when I don't have enough viyami.n C. For onstance. I really don't know any other way to know...but inflammation ' isn't that the immune system causing that? I would take antioxidant for it. Just so healthy tissue is not damaged. DMSO to take down the inflammation. Idk
..your needs will differ. Sorry for such a long ramble. Going to log out until I find some other study or nutrient to raise your attention to. Take care.

 

[Nacht Segler]

Well...brain fog may be related to thyroid. If TSH > 2.0 you get progressively worse symptoms. My TSH hovers just above 2.3 and I don't have brain fog, but my TSH has been as high as 5.5 due to seasonal allergies (after a few months of allergies my thyroid wears out). If TSH gets close to 3, by then I get symptoms. I take thyroid supplements for this....my thyroid can do the job with extra nutritional help to meet the elevated demand. I do not know what else may cause brain fog but suspect (maybe I read so.ewhere?) It could maybe also be caused by inadequate methylation. You can check with a (relatively) inexpensive homocysteine test. Life Extesion used to say this should be 6.3. I have to take a lot of supplements to get mine that low, so have decided to be happy with 9.0. (I think lL.E. may now say 8 is good). To get mine In the ballpark I have to take TMG also. So... when I started Freddds protocol (before this forum), I usedto take those sublingual mB12, which brand at the time, was B Right. As well as Thorne's Basic B (which I still take) , an additional mfolate (various brands), and TMG (I started with higher dose). Please understand this is NOT my protocol because I take many other supplements and they all play a role... I have no idea what taking a few supplements here and there does to you, if you have some unknown deficiency, nor what drug interactions there might be. However, for this PART of Freddds protocol (+ TMG - not sure if that was from him) I tested high in cobalt- thus I discontinued the extra B12 and rely simply on Thorne Basic B (and a multi with active B - so I get small doses of active Bs 2x / day), 1g TMG, and 50mg P5P. I take the extra P5P to protect my kidneys but it will also improve methylation.

ALSO. I want to say I've been taking high dose B vitamins all my life to attempt to fix some kind of lifelong malaise. It didn't work but I felt it was directionally correct if I could find the missing potentiating element(s). I encountered periodic low potassium but not severe because I cannot break down many non-active b's, but my Dad was a diabetic and he gave me potassium when that happened (low dose).. I have slow kidneys because of my blood pressure, so I would not at all recommended potassium without knowing the status. But I came to this with a large protocol and most pieces of it already implemented so... never had to titration low doses or experience major jolts to my system tweaking my protocol like many here. Each person has to find their own way.

But I was raised with nutritionist Adele Davis, with the multivitamin generation, and I strongly believe in making sure all bases are covered with a multi. I f something is directionally correct but doesn't do the trick for me, I don't discard it. I think that metabolic processes take many nutrients to work and maybe I am still missing one I am unaware of.

So, for instance, I took uubiqinone for years, then tested low in it. How could this be? I switched to ubiquitol, the active form, then later discovered if your thyroid is not up to snuff you will have a hard time transforming ubiquinone to ubiquinol. There is usually a key - something not quite right about your protocol. In some cases close only counts in handgrenades...but in many cases I don't believe that. So a lagging thyroid can prolly convert SOME ubiquinone to ibiquinol, for instance. In any case, my best guess protocol that changes over time has kept me alive all my life.

I don't remember all the things that affect methylation besides B, and no doubt new ones were discovered. I believe D, some minerals, and antioxidants were also important, perhaps others. Antioxidants are always #1 to me. I have taken my whole life 2g mineral ascirbates (C), 1 g E, and later also 1g Olive LeF extract (ACE inhibitor), and 1g? Astaxanthin (I'd have to check that dose - it's from NOW). This very much also saved my kidneys from genetic high blood pressure. I hear you can over anti-oxidant. I don't think I do FOR ME. Everytime your immune system comes Into play, which includes allergies, sports,etc), you need serious antioxidants. I have noticed little cuts or abrasions hurt when I don't have enough viyami.n C. For onstance. I really don't know any other way to know...but inflammation ' isn't that the immune system causing that? I would take antioxidant for it. Just so healthy tissue is not damaged. DMSO to take down the inflammation. Idk
..your needs will differ. Sorry for such a long ramble. Going to log out until I find some other study or nutrient to raise your attention to. Take care.

Last I knew my Thyroid was ok.

(Been having to look up all these things you mention as I am not educated in the more "book knowledge" aspects of all this. I've pretty much been going on an intuitive, for lack of better word, approach due to the lack of a number of things when I first started back in 2003 with/on my healing path.)

As I will be seeing a new pri care dr next month, they may run new stuff for me so it's updated. What that may be, I don't know. But at last blood test, things were ok for me.

You mentioned antioxidants. I remember some years ago, I increased my polyphenols intake with certain foods, and I noticed an improvement. I may look for a supplement that can help me along those lines.

I have the bulk of my diet situated, and since what I eat is now regular (not eating all these random things like I did), my guts are far happier...well, at least the "bugs" in them are. I'm just taking stock of what small tweaks I may need to make and how to go about it.

 

[GreenEdge]

The NAC, I wonder if it would help alongside the Glutathione that I am taking.

Taking Glutathione orally is ineffective:

Glutathione Absorption
Orally administered glutathione is only sparingly absorbed due to its rapid hydrolysis by γ-glutamyltransferase present in intestinal mucosa, hepatocytes and cholangiocytes.

It would be best to take the 2 precursors our bodies need to make it: Glycine + NAC.
See (YouTube): Anti-Aging through the ‘Power of Three’. [3 Studies]

The Benfotiamine I wonder if it would help the damage my nerves went through (years ago) with sciatica, but also help the damage that happened to my brain.

Attempting to correct a vitamin b1 deficiency can exacerbate symptoms; start low and go slow. I'm currently experimenting with b1, but I can only take about 13mg every 4 days.

 

[Nacht Segler]

Taking Glutathione orally is ineffective:
It would be best to take the 2 precursors our bodies need to make it: Glycine + NAC.

The one I take is a combination of Glutathione, Cysteine, and Vitamin C. Not sure if it matters or not. (I think I am only on my second bottle, having only learned about it almost a year ago when I was on pre-Elon Husk Twitter following the ME/CFS (and Long Covid) folks).

The best thing I can do for myself is after this bottle, stop and see if I notice any change.

Attempting to correct a vitamin b1 deficiency can exacerbate symptoms; start low and go slow. I'm currently experimenting with b1, but I can only take about 13mg every 4 days.

Ok. It looks like I don't have B1 in my complex unless it goes by another name, so I can make note of this.

 

[triffid113]

Last I knew my Thyroid was ok.

(Been having to look up all these things you mention as I am not educated in the more "book knowledge" aspects of all this. I've pretty much been going on an intuitive, for lack of better word, approach due to the lack of a number of things when I first started back in 2003 with/on my healing path.)

As I will be seeing a new pri care dr next month, they may run new stuff for me so it's updated. What that may be, I don't know. But at last blood test, things were ok for me.

You mentioned antioxidants. I remember some years ago, I increased my polyphenols intake with certain foods, and I noticed an improvement. I may look for a supplement that can help me along those lines.

I have the bulk of my diet situated, and since what I eat is now regular (not eating all these random things like I did), my guts are far happier...well, at least the "bugs" in them are. I'm just taking stock of what small tweaks I may need to make and how to go about it.

I take 1 gram polyphenols in the form of Olive Leaf Extract. This kills a lot of gut bacteria if you don't make enough HCL and lowers your b.p, if elevated

 

[triffid113]

I also just found this site, which is very interesting, and claims thiamine helps brain fog: https://www.healthrising.org/blog/2...-fatigue-syndrome-benefit-high-dose-thiamine/
I am trying benfotiamine, which is oil soluble, for fatigue. But I am only trying a small dose of 150mg because it's oil soluble and I have no experience to say more is ok....so I expect it may take a long time to see results and I'm just prepared for that.