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

Mary

Moderator Resource
Messages
17,587
Location
Texas Hill Country
@Oliver3 - I can't access the video either. btw, thiamine did noticeably boost my energy very quickly (within a day I think) when I first tried it, and then that was followed in a day or 2 by severe fatigue. This happened a couple of times until I gave up on it. I later retried it, same result, but this time did some investigating and discovered that the thiamine caused my phosphorous to tank rather quickly via refeeding syndrome. what’s the rundown on high dose thiamine? | Page 4 | Phoenix Rising ME/CFS Forums
 

Oliver3

Senior Member
Messages
909
@Oliver3 - I can't access the video either. btw, thiamine did noticeably boost my energy very quickly (within a day I think) when I first tried it, and then that was followed in a day or 2 by severe fatigue. This happened a couple of times until I gave up on it. I later retried it, same result, but this time did some investigating and discovered that the thiamine caused my phosphorous to tank rather quickly via refeeding syndrome. what’s the rundown on high dose thiamine? | Page 4 | Phoenix Rising ME/CFS Forums
Hi Mary, I've mentioned on here before that I'm part of a B12 deficiency group that has used a very specific co factors to support the bi vitamins.
There's a kid in England who was severe and reversed his m.e. completely in the group. A fair few stories but apparently you need the co factors like molybdenum and selenium etc.
I darent and can't do the protocol.
But since last year, I've been building up my general tolerance to the vit b complex using a fair bit of vitabiotics in doses not close to what's advised in the group ( btw, they use oils preferably for b vits).
But I've stumbled across this guy on YouTube. He says CFS, fibromyalgia are subclinical forms of beri beri. He's also not fond of oxolates which chimes with me.
But he says he's seen complete reversal with b1 supplementation.
I think it needs co factors and also thiamine can cause paradoxical reactions that you have to get past.
I'm new to his site and need time to sit down and learn but I think it's worth a week if studying.
I feel great today, no POTS...300 mg of thiamine....but obviously one swallow does not a summer make.
 

Oliver3

Senior Member
Messages
909
@Oliver3 - I can't access the video either. btw, thiamine did noticeably boost my energy very quickly (within a day I think) when I first tried it, and then that was followed in a day or 2 by severe fatigue. This happened a couple of times until I gave up on it. I later retried it, same result, but this time did some investigating and discovered that the thiamine caused my phosphorous to tank rather quickly via refeeding syndrome. what’s the rundown on high dose thiamine? | Page 4 | Phoenix Rising ME/CFS Forums
I've posted a link to that young fellow. He knows his stuff it seems and says he's had results with his patients. If but b deficiency is part of rob phairs ideas, this is worth a go.
He says high calorie, low nutritional yield from lack of
 

JES

Senior Member
Messages
1,341
If thiamine was the cure or a good treatment for ME/CFS, we would likely all know it by now. The more common the drug/supplement/vitamin, the more likely it has been tested over and over again. Therefore it makes sense that something as extremely common among supplements such as thiamine would less likely be of any miracle help.

There are certain other forms of thiamine such as benfotiamine, which seems to be of special help to diabetics and alli- and sulbutiamine, all of which are fat soluble and could perhaps reach higher levels in the body. I reckon sulbutiamine has some nootropic effects and could be of use against brain fog, but again, I doubt its positive effects are really due thiamine deficiency as such.

I have not seen any evidence supporting the view that ME/CFS and similar diseases are some form of beri beri either. This hypothesis should be easy to prove/disprove by measuring the thiamine levels in blood among ME/CFS patients. Nowadays you can measure this very accurately via whole blood sample or use other biomarkers such as levels of various enzymes that depend on B vitamins.
 
Messages
600
@JES high dose thiamine doesnt necessarily work because of its role as a b vitamin though. In the article i linked Jeffrey Lubell suggests a few reasons why it works such as it being a carbonic anhydrase inhibitor.

From the poll they ran there seems to be a subgroup that benefit from HDT, must be a reason for that imo.
 

Shanti1

Administrator
Messages
3,340
I find that high dose thiamine helps significantly with brain fog, focus and energy. At first I tried regular B1 and, it worked great for the first day or two and then made me worse. Taking a break would reset the cycle. I then tried benfotiamine and had the same response as my response to regular B1.

Finally, and without much hope, I tried allithiamine. I am so glad I did as I have been able to tolerate it every day without negative or diminishing effects. It has not helped with my dysautonomia, but for mental function, it is one of my lifelines.
 
Last edited:

Shanti1

Administrator
Messages
3,340
What dose are you using?

I'm a "light weight" and very sensitive to almost anything I put in my body, so most people would probably need higher doses than what affects me.
For the regular B1 I was experimenting with 200mg
For the Benfotiamine -250
For the Allithiamine I just need a maintenance dose of 50mg but I take 150mg if I need extra for some reason.
 

Alvin2

The good news is patients don't die the bad news..
Messages
3,046
Does nothing for me
If thiamine was the cure or a good treatment for ME/CFS, we would likely all know it by now. The more common the drug/supplement/vitamin, the more likely it has been tested over and over again. Therefore it makes sense that something as extremely common among supplements such as thiamine would less likely be of any miracle help.
+1
 

Murph

:)
Messages
1,802
Thiamine has been measured in a couple of studies.

Naviaux found it was higher on average among in cfs patients in men but not women (nb log scale, levels are extremely uneven between people and a good chunk of the difference in averages is driven by outliers)

Screen Shot 2023-01-30 at 10.11.59 am.png



Hanson 2018 found patients were higher too, although most people fell below the threshold of detetction which is why many of the results are the same. (note again log scale, note also colours reversed from above)

Screen Shot 2023-01-30 at 10.02.02 am.png



Overall this is not strong data but it is certainly not clear evidence of widespread thiamine deficiency. It doesn't follow though that supplementation doesn't help. Could be there are other problems that mean having super high levels of thiamine is useful. I note that thiamine is tied up in the function of pyruvate dehydrogenase, which is hypothesised to be blocked.
 

Oliver3

Senior Member
Messages
909
I find that high dose thiamine helps significantly with brain fog, focus and energy. At first I tried regular B1 and, it worked great for the first day or two and then made me worse. Taking a break would reset the cycle. I then tried benfotiamine and had the same response as my response to regular B1.

Finally, and without much hope, I tried allithiamine. I am so glad I did as I have been able to tolerate it every day without negative or diminishing effects. It has not helped with my dysautonomia, but for mental function, it is one of my lifelines.
Thanks. Good to know. I've not heard of this.
I'm going to try brewer's yeast as well as a more nutritional way of addressing this
 

Oliver3

Senior Member
Messages
909
Thiamine has been measured in a couple of studies.

Naviaux found it was higher on average among in cfs patients in men but not women (nb log scale, levels are extremely uneven between people and a good chunk of the difference in averages is driven by outliers)

View attachment 50476


Hanson 2018 found patients were higher too, although most people fell below the threshold of detetction which is why many of the results are the same. (note again log scale, note also colours reversed from above)

View attachment 50477


Overall this is not strong data but it is certainly not clear evidence of widespread thiamine deficiency. It doesn't follow though that supplementation doesn't help. Could be there are other problems that mean having super high levels of thiamine is useful. I note that thiamine is tied up in the function of pyruvate dehydrogenase, which is hypothesised to be blocked.
Yes, that's what made me think I'd give it a go. So far so good
 

Oliver3

Senior Member
Messages
909
If thiamine was the cure or a good treatment for ME/CFS, we would likely all know it by now. The more common the drug/supplement/vitamin, the more likely it has been tested over and over again. Therefore it makes sense that something as extremely common among supplements such as thiamine would less likely be of any miracle help.

There are certain other forms of thiamine such as benfotiamine, which seems to be of special help to diabetics and alli- and sulbutiamine, all of which are fat soluble and could perhaps reach higher levels in the body. I reckon sulbutiamine has some nootropic effects and could be of use against brain fog, but again, I doubt its positive effects are really due thiamine deficiency as such.

I have not seen any evidence supporting the view that ME/CFS and similar diseases are some form of beri beri either. This hypothesis should be easy to prove/disprove by measuring the thiamine levels in blood among ME/CFS patients. Nowadays you can measure this very accurately via whole blood sample or use other biomarkers such as levels of various enzymes that depend on B vitamins.
It's still worth trying if you haven't . Maybe it needs megadoses. Maybe it needs co factors to get the mineral wheel started.
I just thought I'd mention it anyway
 

Oliver3

Senior Member
Messages
909
If thiamine was the cure or a good treatment for ME/CFS, we would likely all know it by now. The more common the drug/supplement/vitamin, the more likely it has been tested over and over again. Therefore it makes sense that something as extremely common among supplements such as thiamine would less likely be of any miracle help.

There are certain other forms of thiamine such as benfotiamine, which seems to be of special help to diabetics and alli- and sulbutiamine, all of which are fat soluble and could perhaps reach higher levels in the body. I reckon sulbutiamine has some nootropic effects and could be of use against brain fog, but again, I doubt its positive effects are really due thiamine deficiency as such.

I have not seen any evidence supporting the view that ME/CFS and similar diseases are some form of beri beri either. This hypothesis should be easy to prove/disprove by measuring the thiamine levels in blood among ME/CFS patients. Nowadays you can measure this very accurately via whole blood sample or use other biomarkers such as levels of various enzymes that depend on B vitamins.
The b 12 deficiency group on Facebook has had patients go into remission from CFS.
It's just my job anyway, for this year, to try stuff around minerals. So morley Robbins magnesium advocacy group and getting b vits running properly again
 

Judee

Psalm 46:1-3
Messages
4,544
Location
Great Lakes
Could be there are other problems that mean having super high levels of thiamine

Could the levels be high because they're not converting to the useable form in the body?

I have like 6 different Thiamine polymorphisms listed on my genetics report.

I think I got a slight boost from trying Thiamine recently but wondered if the coenzymated form would be better. That way my body wouldn't have to try to convert it. ???

I didn't do well on Benfotiamine and haven't tried the Allithiamine.

Has anyone tried the coenzymated form?
 
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