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

[Oliver3]

Good to hear you have some improvement.
I have to say, despite still being limited and still having bad days when I significantly over extend, thiamine is definitely helping.
The major thing, that is smthg I thought was gone for good, is my calmer sense of self returned coupled with confidence.i don't mean confidence cos I can do more, it's like my mind just refuses to dwell on things whereas before it refused to not dwell on things!!!!
I also have more colour in my skin, especially in my hands that have previously just had that m.e. pallor.
I've got more endurance
I'm also excited for the next day. When previously I just dreaded another day of pain and terror.
That is not to say I'm cured tho. If I overextend, the pem is still bad.i can't do two days in a row of fairly extensive activities without crashing ( just done that to myself today).
This is one of the first days with proper dysautonomia in a while but I really did have to push myself for a family member.
But like judee,if I rest and am careful, there is a sense of regarding and not this feeling of one inexorable deterioration..
I have many family stressors at the moment which is interfering with this experiment but I've definitely improved.
I'm up to nearly a gram of thiamine a day

 

[Wayne]

I've definitely improved. I'm up to nearly a gram of thiamine a day

Hi @Oliver3 -- I'm really, really, really happy to hear about your improvements. May they continue!

 

[Oliver3]

Hi @Oliver3 -- I'm really, really, really happy to hear about your improvements. May they continue!

Hey Wayne, that's very kind of you. I intend to keep doing this for a year, unless it got really sketchy.

 

[lou7080]

As an update, I am still getting benefit from a combo of allithiamine and coenzymated B1. Not surprisingly, I don't get the same boost that I did when I fist started them, but they have become a permanent part of my daily supplements and, along with everything else, help to increase my function.

Are you still liking thiamin pyrophosphate? I live in the US and am thinking of ordering some from Europe, the metabolics brand. Which brand do you take? The only one I see in the US is Source Naturals and it is a higher dose so maybe I should go with that though it has more ingredients. Thanks!

 

[Oliver3]

Hi. I'm taking nature's aid thiamin.
It's the HCl versioni also take vitabiotics b vit spectrum. Vit D3 n k , I spray on magnesium chloride and oxide and take a dirolyte rehydration sachet and keep well hydrated

 

[Shanti1]

Are you still liking thiamin pyrophosphate? I live in the US and am thinking of ordering some from Europe, the metabolics brand. Which brand do you take? The only one I see in the US is Source Naturals and it is a higher dose so maybe I should go with that though it has more ingredients. Thanks!

Yes, I am still taking it, 1-3 lozenges a day in addition to 50-100mg of allithiamine. I don't feel the same benefit as when I originally started it, but I am still finding it consistently increases my mental function and lowers my brain fog. I still feel a boost within 15mins of using a thiamine pyrophosphate lozenge.

I use the Source Naturals Coenzymate B1 (thiamine pyrophosphate). One lozenge is 13mg.

 

[Judee]

I think my tremors may be happening less. They were a new unpleasant symptom that just started within the last year or two so that would be nice if they are.

 

[Nord Wolf]

Has anyone had their Thiamine properly tested? This seems to be the most accurate test for B1 levels:
https://www.mayocliniclabs.com/test-catalog/Overview/42356

I ask because I'm curious if everyone is trying things based upon the idea of BI deficiency, or because they were tested and found to have a deficiency.

 

[sb4]

I had a somewhat fancy blood test done after I had experienced improvement using B1. I went off it for a month I believe before testing.

As you can see my B1 is in range but strangely B2 was deficient. So there is a possibility that before taking B1 I was deficient but who knows.

If I remember correctly the test measure how "thirsty" certain blood cells are for the b vitamins and this gives a better idea of deficiency vs just measuring the amount in the blood.

 

[Nord Wolf]

As you can see my B1 is in range but strangely B2 was deficient. So there is a possibility that before taking B1 I was deficient but who knows.

If I remember correctly the test measure how "thirsty" certain blood cells are for the b vitamins and this gives a better idea of deficiency vs just measuring the amount in the blood.

Interesting, thank you for sharing. I see a lot of threads where people hear about a possible deficiency in a mineral or vitamin and then start taking and experimenting. I'm always hesitant and err on the side of caution with taking anything. I would rather test and know than gamble with experimentation, especially with something like B1 which has no long term studies showing the safety of high dosing, nor has any clear research (especially on personal levels where it counts) showing direct connections to the development of certain diseases. The whole Internet B1 deficiency being the cause for so much push seems too young and lacking in clear factual research to give more weight than any other potential deficiency. Just my opinion of course. And my opinion is admittedly based upon my own bias of have severe reactions to many medications and supplements since developing dysautonomia conditions.
Hence my lean toward testing to know before experimenting when at all possible..

 

[sb4]

@Nord Wolf That is indeed the most optimal way to do things. For me though, it's cheaper to do it the other way around, test a whole bunch of things out then if they help try and find out why. Although you then run into problems like this.

I tend to lean towards the idea that it's not that we are deficient in B1 more that B1 acts like a drug in very high doses, doing things like activating the PDH complex which perhaps is being suppressed by the immune system / virus.

Either way my positive effects with B1 have been short lived every time I have tried. As though my body adapts to it. Though I do believe the initial time I tried it permanently knocked me up 1 level though I can't say for sure.

Taking B2 in many diferent forms didn't seem to have much of an effect despite that test saying I was deficient.

 

[TinaT]

@Nord Wolf That is indeed the most optimal way to do things. For me though, it's cheaper to do it the other way around, test a whole bunch of things out then if they help try and find out why. Although you then run into problems like this.

I tend to lean towards the idea that it's not that we are deficient in B1 more that B1 acts like a drug in very high doses, doing things like activating the PDH complex which perhaps is being suppressed by the immune system / virus.

Either way my positive effects with B1 have been short lived every time I have tried. As though my body adapts to it. Though I do believe the initial time I tried it permanently knocked me up 1 level though I can't say for sure.

Taking B2 in many diferent forms didn't seem to have much of an effect despite that test saying I was deficient.

I'm new here. What do you mean it knocked you up permanently to level 1? What is level 1?

 

[Judee]

I also had the experience of feeling worse on benfotiamine until I took it with a phosphorus source.
Most nutritious food are high in phospohorus and if I eat a good amount in the time after taking the benfotiamine I feel better instead of worse. (And not just the 'better from eating' that one would expect.)

I had some old phosphorus pills (long discontinued) in my "supplement graveyard" so I tried one of them last night with the benfotiamine. It did seem better that way.

There is a Metabolics brand of phosphorus that can be purchased in the UK that seems reasonable so I will consider these maybe when I run out of my "supplement graveyard" supply. https://www.metabolics.com/magnesium-phosphate-pot-of-90-capsules.html

Either way my positive effects with B1 have been short lived every time I have tried. As though my body adapts to it. Though I do believe the initial time I tried it permanently knocked me up 1 level though I can't say for sure.

Have you tried to join the FB thiamine groups? They have a lot of good info on tips for getting this to work.

 

[sb4]

Have you tried to join the FB thiamine groups? They have a lot of good info on tips for getting this to work.

I dont use fb. Most of the stuff ive seen generally adresses negative/paradoxical effects of b1 as opposed to it just not working. Do you know if that fb group has anyone that has overcome this tolerance effect? If so ill check it out.

 

[Judee]

as opposed to it just not working. Do you know if that fb group has anyone that has overcome this tolerance effect?

So I did find some who said it stopped working for them. I PM'd you because I can't remember those group's FB rules for reposting someone else's comments and didn't want to be in violation.

 

[Oliver3]

I've started taking lions mane mushroom powder to add to things.
There is a discernible improvement again.
I'm being careful with dosing.
I've spent 4 days in a row, 6 hours out , driving shopping etc.
It's been hard at times. But that was impossible before. Again I don't know if this will last but I've felt FEELINGS again other than dread and horror

 

[Jyoti]

Again I don't know if this will last but I've felt FEELINGS again other than dread and horror

I'm just thrilled for you!

 

[Judee]

I've started taking lions mane mushroom powder to add to things.

See, I still do suspect some underlying pathogenic infection for those of us with ME that is maybe adding to the paradox so I've been debating about adding back in the Buhner herbs as they always did seem to help me a little.

I had this thought a couple weeks ago but didn't want to "rock the boat" as they say but seeing your comment, I think I'll start adding them back in too if I can.

Someone in the FB group (ME for 35+ years) had to double her ttfd when she got covid in order to feel well again. She said everytime she starts to go back to her pre-covid dose she starts going downhill once more but she said the new dose is "unsustainable." (I'm guessing she meant financially because her post-covid dose is pretty high.)

However, she said she is working on "something else" along with the ttfd that seems to have solved the problem. I asked her if she will let us know what that is and give updates and she said she would. I guess she wants to experiment with whatever it is more first before reporting but I am wondering if it might be an antiviral or antibacterial of some sort.

 

[BrightCandle]

I've started taking lions mane mushroom powder to add to things.
There is a discernible improvement again.

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.

 

[Oliver3]

Have you tried lions mane...of course not a cure but again considerable improvement.
The b 1 I've cut back on slightly( still taking it) as lions mane has thiamine in it.
I'm slowly working my way through these medicinal mushrooms. Reushi, Chaga etc).
One at a time. Lions mane is great. The PTSD feeling is so much less.
I think it's another vasodilator and is packed with a shed load of stuff we need.
Like all these things..start off low and slow. I'd hate for anyone to crash from my advice