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https://youtu.be/fsxnw2caw5c Thiamine deficiency as a main contributor to cfs

Oliver3

Senior Member
Messages
839
I think its the beta glucans. I have also found that more doesn't seem to help, you take in some and you feel a little better but you can't use more nor add diffferent sources and get more benefit. I get the same effect from beta glucan tablets as I do to lions mane and oat bran. So of the three sources I use oat bran, its cheaper. Might be worth doing the same tests and seeing if oat bran instead of lions mane also works for you.
Thanks. Will deffo give it a go.
Right now I'm just really glad I feel away from the " death zone". I know I can go back there, so as somethings working , I'm gonna revel in being able to be slightly human.
That Saud, I will try your suggestion. Would be great to get the sane benefit for less.
There's so many antioxidants, iron, VIT d thiamine, potassium etc that I like the overall nourishment

But again thanks. I'll deffo try oat bran
 

Oliver3

Senior Member
Messages
839
Just thought I'd update. I'm seeming to be craving less b1. I still supplement. Perhaps two hundred to 300 mg a day.
I added in lions mane...which is fantastic, but I can't take it for more than three days at a time as the energy it gives me starts going into anxiety.
But I've added in reishi mushrooms. I don't get the sane high but feel more stabilisers.
The proof something is happening: two forty minutes walk today ( that's been a no no for years), a trip to the launderette s...usually my pots goes crazy lifting the bags..nothing...I also walked another twenty minutes whilst I waited for the laundry.
The mushrooms have a lot of nutrients including thiamine.
I'm not sure what's happening but I've been on the beginning end of severe, sometimes extremely Ill.
The lions mane btez stopped my vivid induced tinnitus. It's back on reishi mushrooms but nowhere near as bad.
The choking sensations around my neck is also nowhere near as bad.
Of course, I'm still really sick.
If a healthy person was to jump into my body, I'm pretty sure they'd be horrified but considering where I've been, as probably most of us have, where you're not sure you'll survive the dayz this is a turn up for the books
I hope it lasts. I hope this advice also helps someone else
 

Judee

Psalm 46:1-3
Messages
4,395
Location
Great Lakes
So I'm taking electrolytes including magnesium and potassium but have developed an eye twitch since starting this protocol.

Any ideas?
 

lyran

Senior Member
Messages
183
So I'm taking electrolytes including magnesium and potassium but have developed an eye twitch since starting this protocol.

Any ideas?

Sounds like a stimulatory effect to me. Maybe your B1 dose is too high? Acetyl-L-Carnitine did that to me.
 

Oliver3

Senior Member
Messages
839
After being the most active and normal I've been in decades for a sustained period, I feel crappy.
I don't think I've been careful enough with co factors. Also using mushrooms just made me feel almost normal at times. It reminds of people who take abilify. They extend themselves with a false loan of energy given by the drug and deplete themselves.
My blood flow is still better. Better erections and better flow to the hand ( veins are " full" instead of being lifeless.
It's not the worst crash but I got carried away.
In my opinion, there is definite therapeutic benefit but you just can't over extend or not use cofa tors or take the thiamine dose too high.
I shall keep experimenting as I'm giving myself a year at this.
Just thought I'd give an update to anyone whose Interested.
Those points of feeling normal tho.....god how easy life is when this beast is not in our way
 

Jyoti

Senior Member
Messages
3,365
I'm really sorry to hear this, @Oliver3. I so feel you--
god how easy life is when this beast is not in our way
It is tantalizing, almost impossible to resist. And so brutal when we have had a brief taste, only to have it vaporize. I am glad you are experimenting all year, and I hope that this is a small setback on a longer road to, if not normalcy, a life a lot closer to it.

I am one of the silent watching here....and something about thiamine feels like it is important for me too. I have been slowly, slowly adding glycine, tiny bits of B Complex, and this week started on a very small dose of thiamine HCL. I hope to approach the alithiamine I have in my supplement cupboard in late May. I did buy the alithiamine in a fit of enthusiasm, took 50 mg two days in a row and crashed for a month. Hypokalemically.

Wishing you the best, and appreciating all your experiments and updates. @Judee--you too!
 
Messages
13
After being the most active and normal I've been in decades for a sustained period, I feel crappy.
I don't think I've been careful enough with co factors. Also using mushrooms just made me feel almost normal at times. It reminds of people who take abilify. They extend themselves with a false loan of energy given by the drug and deplete themselves.
My blood flow is still better. Better erections and better flow to the hand ( veins are " full" instead of being lifeless.
It's not the worst crash but I got carried away.
In my opinion, there is definite therapeutic benefit but you just can't over extend or not use cofa tors or take the thiamine dose too high.
I shall keep experimenting as I'm giving myself a year at this.
Just thought I'd give an update to anyone whose Interested.
Those points of feeling normal tho.....god how easy life is when this beast is not in our way
Dear Oliver
Another Oliver here ^^
I have not read the full thread, my brainfog does not allow that at the moment :/
But I read your statement regarding Abilify.
Something I have not yet tried, but wanna try soon.
But you sound negativ about it... like it gives people "false" energy... Does that happen a lot?
Is LDA (low dose abilify) basically just cheating for a while, making us feel like we have more energy than what is actaully there and then we crash even harder after a while?
Or what do you mean?
Would be greato to know more about the risks (usual outcomes) of LDA, even though I can not read long texts currently :/
Thanks a lot, Oliver
 

Oliver3

Senior Member
Messages
839
Hi Oliver. There is actually a group on Facebook for users of abilify.
From what I've read some people do very well and it stays, some people, it makes sicker but most struggle with trying to keep within their limits whilst feeling slightly better.
That's just my interpretation tho. I haven't taken abilify or ldn but I know people who have taken both and they said they had gains, a bit like with my use of thiamine and adoptogen mushrooms.
It's a really difficult balance.
The thiamine is still helping. I need to be more careful with my co factors, like full vit b complex, selenium, maybe even add iodine in there.

Hope this helps my friend
 

Judee

Psalm 46:1-3
Messages
4,395
Location
Great Lakes
I'm still having paradox even though I backed off of everything and just started to add things back in slowly again. I messaged back and forth with Ola today in the FB group.

She is advising me just to do a low-dose multi or non-methylated b-complex but only tiny amounts...like a few milligrams of each b-vitamin per day for now.

She also said to take molybednum with food and slowly increase that for now. I react to even that so may need to find a non-glycinated version. She thinks my sulfur intolerance is what is getting in the way. However, with years of most avoidance and then antibiotics I'm able to eat more sulfur/thiols now so not sure about this...still I will see what I can do to follow her advice as she has had ME/CFS for over 35 years and is getting relief with the thiamine protocol. Plus she isn't asking me to do something hard.

I had asked her what the anti-viral thing she is trying is. Anyway, I assumed it is antiviral because she mentioned since getting covid she had to double her dose of ttfd to get back to her improved baseline again. But she said the higher amounts of ttfd were "unsustainable." (It really was a lot she was having to take.) She mentioned finding a solution to that.

She won't tell me though what it is she is trying now. I guess because she wants to make sure it will really keep working and/or that other people in her ME/CFS group also get improvement on it though when I asked her previously if she will eventually discuss it she said she will at some point. ??? (Hopefully soon.)

Just an interesting note: I think she once mentioned that the country she is in (I think possibly Netherlands but cannot remember now) has a nursing home for ME/CFS patients. Wouldn't that be nice if more countries, states, cities had those, hey? One geared just towards patients like us. I know...dream on. :)
 
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Oliver3

Senior Member
Messages
839
One can only dream. It's a travesty.
I'm back to baseline feeling ok now btw.
Molybdenum scares me. I'm part of a b group that insists on that but it seems to give people reactions.
I'm building up my vit b complex intake etc al just slowly
 

lyran

Senior Member
Messages
183
She also said to take molybednum with food and slowly increase that for now. I react to even that so may need to find a non-glycinated version. She thinks my sulfur intolerance is what is getting in the way. However, with years of most avoidance and then antibiotics I'm able to eat more sulfur/thiols now so not sure about this...still I will see what I can do to follow her advice as she has had ME/CFS for over 35 years and is getting relief with the thiamine protocol. Plus she isn't asking me to do something hard.

Have you tried taking thiamine with coenzyme form of riboflavin (B2): riboflavin 5'-phosphate? I remember taking Benfotiamine and it did cause sulfur issues but taking it with coenzymated B2 it did not.
 

Judee

Psalm 46:1-3
Messages
4,395
Location
Great Lakes
Have you tried taking thiamine with coenzyme form of riboflavin (B2): riboflavin 5'-phosphate?
I haven't though I have been taking regular B2 off and on along the way with this protocol because I heard that the other b vitamins need B2 to absorb.

I need to take a few days off from everything and then retry some things.

Thanks for the tip. :)
 
Messages
44
I'm new here, and desperate, so jumping right into things. I might be new here, but I am several years into trying to diagnose this. Because I thought ME/CFS was "Long Covid" I ignored it for a long time, because I had avoided COVID the entire pandemic. Now that we're realizing Long COVID is just ME/CFS, it caused me to look this way. I wish I had done this years ago.

A few things that jumped out at me about this Thiamine deficiency thing:

caffeine neutralizes thiamine
high carb diets need more thiamine
the list of high thiamine foods are a who's who of things I don't eat

I don't eat pork, I don't eat seafood, I don't eat any of the vegetables that have it, except Asparagus maybe once or twice a year. I looked at the bread I've been eating for a couple years, and it doesn't have thiamine enriched in it. It made me start wondering, what if society has just shifted off of some foods we used to get thiamine from, and now a subset of us are in this hole? I will drink upwards of 4-5 12 oz sodas a day, all with caffeine, well, I was. I also basically only ate carbs. When things would get bad, I think I was actually cutting out my only thiamine sources, because I thought this was SIBO.

So with the knowledge of all that, and the fact that I've gone down many other paths (tick borne illnesses including Alpha gal, other deficiencies, thought my PPH was progressing to heart failure, etc). The fact that I have PPH and a thiamine deficiency leads to congestive heart failure is also a crazy sign. So, I asked my PCP for the B1 test, TDP I think, and did that yesterday. I then went to CVS, got magnesium and B Complex. I've been eating a little bit of thiamine with each meal, and taken the vitamins twice now. I'm already seeing benefits. It could be that I am coming off of a PEM or something, so I am not overly hopeful, but I also know my body quite well after years of suffering. I even had this weird thing where my feet were causing problems that seem somewhat unique to me, and that has gotten better in 24 hours. Tachycardia seems better, not getting so out of breath, I feel groggy after waking up as if I actually got rest.

Anyhow, fingers crossed. Blood work takes 5-7 days, lower than 70 is abnormal. I told my wife, my guess is 12, just for no reason but a guess.
 

JES

Senior Member
Messages
1,318
According to a quick Internet search, almost all baking bread flour used today contains thiamine, so even if your bread type doesn't explicitly state that, it almost certainly contains thiamine. Apparently highly processed carbohydrates and white rice contain a bit less, so I suppose it would make it slightly more likely to develop thiamine deficiency.

Still, I'd be very surprised if a person in the western world developed clinical thiamine deficiency, alcoholic people and those with some genetic defects aside. Even with the poor diets of people today, the *average* dietary B1 intake in men in USA is 2 mg, which is more than enough to avoid anything like beriberi from developing. If you had a blood thiamine level of 12, you would probably be diagnosed with beriberi, which comes with quite obvious nervous system issues and is quite different from typical ME/CFS symptoms.

I have yet to come across people here who reported they had clinical thiamine deficiency. The reason ME/CFS patients report improvement from thiamine has probably little to do with thiamine deficiency. See for example this blog post and quote below.

“[T]hiamine, and particularly its derivatives, are being used as ‘drugs’. It is nothing to do with simple vitamin replacement. The enzymes that require thiamine have been deprived of it for so long that it can be expected that they have deteriorated ‘physically’ in their metabolic responsibility. The cofactor has to be used in megadoses in order to stimulate the enzymes back into their normal function.”
 
Messages
44
Here’s the thing though. I had c diff for almost two years, I’m on immunosuppressants and have poor nutrient intake due to all of this. Does it still seem unlikely? before my condition moved to constipstion/diarrhea cycle it was loose stools for years. At one point last year I was on the hospital and took 5 liters of fluid, but I had been drinking 80oz or more of water a day.

Confused by this forum, i clicked quote. Also, are you saying I need to get a bigger dose, that I shouldn’t be seeing improvements on 833% daily intake plus food with it?
 
Messages
44
According to a quick Internet search, almost all baking bread flour used today contains thiamine, so even if your bread type doesn't explicitly state that, it almost certainly contains thiamine. Apparently highly processed carbohydrates and white rice contain a bit less, so I suppose it would make it slightly more likely to develop thiamine deficiency.

Still, I'd be very surprised if a person in the western world developed clinical thiamine deficiency, alcoholic people and those with some genetic defects aside. Even with the poor diets of people today, the *average* dietary B1 intake in men in USA is 2 mg, which is more than enough to avoid anything like beriberi from developing. If you had a blood thiamine level of 12, you would probably be diagnosed with beriberi, which comes with quite obvious nervous system issues and is quite different from typical ME/CFS symptoms.

I have yet to come across people here who reported they had clinical thiamine deficiency. The reason ME/CFS patients report improvement from thiamine has probably little to do with thiamine deficiency. See for example this blog post and quote below.

What kinds of nervous system issues? I’m not trying to sound like someone who just says, “yeah I have that”, but I’ve also downplayed my condition for years. I have horrible eye and neck spasms, brain fog, confusion, constant headaches, intense pressure behind my eyes, like that?
 
Messages
44
I'm gonna make my own post on this, since I hijacked it. Sorry all, brain fog, stream of consciousness research and thinking leads to a lot of spam from me. The good news is, I am seeing massive changes, stuff I haven't seen in years.