Thiamine, vitamin B1, is it a cure?

[kiwis]

Hi All,

Has anyone gone into long-term complete remission through high-dose Thiamine supplementation? were/are you a heavy drinker?

Due to the positive outcomes in clinical studies (https://www.healthrising.org/blog/2021/04/15/thiamine-b-1-chronic-fatigue-syndrome-fibromyalgia/) and the poll results on this board (https://www.healthrising.org/blog/2...-fatigue-syndrome-benefit-high-dose-thiamine/) where 2/3 of voters experienced large benefits, I started taking Thiamine mid-way through last year and have not had PEM since.

2nd question- Why do people on this board talk constantly about essentially all these other vitamins/potions/trinkets/nutrition but never really about Thiamine? I am wondering if those who successfully take Thiamine go into remission and then stop posting?

 

[JES]

If you use the search function, you'll find 30+ threads here on PR with "thiamine" in threat title. Here is one discussing the specific survey and here is a long one discussing mechanisms.

Thiamine is incredibly easy to get hold of, so I would expect if it worked as well as claimed for us, there would be more cure stories. The Health Rising survey had a low participant count of 55 and with such a small number of answers I suspect many people whom it didn't help didn't bother answering it.

I have read some success stories particularly with more absorbable forms of thiamine like allithiamine, benfotiamine and sulbutiamine, which I would be interested in trying at some point. It seems some of the survey participants used those forms as well, which are harder to find available. The last time I tried regular thiamine it produced a "wired but not tired" effect, which is a sign it isn't working for me.

 

[Wishful]

B1 gave me a slight benefit the first couple of doses, then stopped having any noticeable benefit. Responses to ME treatments is very individualistic. B1 is definitely not a treatment that works for everyone with ME. BTW, that survey showed people taking it long-term, which makes it a treatment (for them), but definitely not a cure. A cure means that you no longer have to take the treatment.

I wish B1--or any other treatment-- would work reliably for a lot more people. Instead, we have treatments that work well for a few people, do nothing for others, and make others worse.

My guess is that for those that it does help, B1 is correcting an upstream comorbid disorder that worsens ME, or treats a downstream symptom. It's probably not affecting the core dysfunction of ME, or else it would work for more people.

 

[kiwis]

Thanks for the replies. I understand who to use a search function, I am just surprised given the positive results in clinical studies and recent anecdotal evidence, the vast majority of discussions on thiamine were before the positive news came out. Yet positive news has come out and yet is completely dismissed with comments like JES above that only people with positive experience would submit a response to a poll (I guess the site should ban polls). Anyway, looking forward to some answers to the first question. And wishful, your positive response to cumin could be due to its high thiamine content, maybe something to consider? As it Cumin has more thiamine in it compared to almost any other herb or spice. And wishful good point about the treatment rather than cure.

 

[Wishful]

And wishful, your positive response to cumin could be due to its high thiamine content, maybe something to consider?

No, that's fairly unlikely, since I had been consuming other foods rich in thiamin (probably more than contained in a tsp of cumin), and didn't notice a similar benefit. I tried other herbs&spices that contained some of the other components of cumin, with no effect, so I'm convinced that it was the cuminaldehyde.

 

[Carl]

I have been taking Benfotiamine for a very long time, many years, probably over 10 at doses of 600mg and now 500mg/day. I take it for it's benefit to AGE (Advanced Glycation End products). It is difficult to say if there is any help to my ME seeing as another treatment virtually eliminates most of the adverse effects of ME.

B1 is not a cure and it does not address the cause which lies in the digestive system.

 

[VisualEffect]

I took 100 mg of thiamine hcl for 1 week, no benefits unfortunately. I will try to up the dose and see what happens!
I saw some posts on reddit that even moderate doses of thiamine hcl (30-50mg) helped someone significantly with dysautonomic symptoms (of course not curative, but improvement remained after stopping thiamine)

 

[kiwis]

Thought I would post an update. I haven't had any CFS/PEM symptoms since starting taking High-dose thiamine last Aprilish. This week I finally plucked up the courage to do my first intense exercise since getting CFS around 6 years ago). I ran up possibly the steepest street in my city, to be honest, I still expected to get PEM from the run. I thought the chances were like 75% - 25%. But nothing

I never tried any of the other supplements people discuss on this board, there seemed to be no supplements that seemed to make a difference to many people, and no scientific studies to back up individual claims, except for Thiamine B1 (as mentioned in my 1st post). Who knows, it could just be a coincidence that my CFS somehow resolved itself around the time I start taking it, my CFS was starting to get really really bad when I started taking it though.

I don't think I will ever find out what would happen if I stopped taking it, because to me the risks are far too great to ever test that theory out. Anyway, I assumed the CFS was just a lifelong disease with no hope of a cure, or remission but I just wanted to say that may not be the case, however it gets resolved.

 

[Rufous McKinney]

I started taking Thiamine mid-way through last year and have not had PEM since.

A friend emailed me insisting I do the AllThiamine cure. She said it really helped her mother's neuropathy.

I purchased the recommended three products: an All Thiamine, Biotin and charcoal.

Figuring this would initiate a HERX and detox reaction, I postponed the experiment. It's 10 months later and I have yet to try it.....(got Zeolite, have yet to try it)

I take good B's already in a multi.

- Why do people on this board talk constantly about essentially all these other vitamins/potions/trinkets/nutrition but never really about Thiamine?

yes I have noticed that...I guess I'm suspicious of the entire assertion that some B vitamin is going to fix this.,..

 

[BrightCandle]

I think the reality is for the bulk of supplements they have been tried before in the past 80 or so years and mostly not shown any particular effect, so its really unlikely something as basic as Thiamine would do anything of note on its own, especially since plenty of us take B vitamins already. Where the potential break through could be is in a magic combination or a much higher dose than normal. These two paths are much less well trodden but you are also very unlikely to get there by guessing. You need some strong biochemistry reason to try a very particular combination or high dose because a dysfunction has been found commonly in ME/CFS patients and it could be the root of the condition. With that underlying theory of the disease then you are left with dosing and if within some semblance of safe intake does a combination work. This is my view on what I am willing to try myself and why I try certain things. Its not enough for someone to say it helped them, I need that theory of action and it needs to have reasonable supporting evidence from the research.

Its something I tried very early on and it did nothing of note for me.

 

[Rufous McKinney]

through high-dose Thiamine supplementation

my Alli- Thiamine...is only 50 mgs. Teh study suggests a female take 1800 mgs. I'd be swallowing half the bottle.

EGAD

 

[YippeeKi YOW !!]

a dysfunction has been found commonly in ME/CFS patients and it could be the root of the condition.

What is that dysfunction? I can think of a couple, so not sure which we're talking about ....

 

[kiwis]

BrightCandle you are far more experimental than me, it sounds like you have tried many different things. To me, Thiamine has been the only thing that passed my test for trying, so I am surprised you are so anti-especially after you tried it yourself.

"I think the reality is for the bulk of supplements they have been tried before in the past 80 or so years and mostly not shown any particular effect, so its really unlikely something as basic as Thiamine would do anything of note on its own"

I guess I would point to the study on the forum which should showed 2/3 of people experienced a large benefit of taking thiamine (https://www.healthrising.org/blog/2...-fatigue-syndrome-benefit-high-dose-thiamine/

"You need some strong biochemistry reason to try a very particular combination or high dose because a dysfunction has been found commonly in ME/CFS patients and it could be the root of the condition"

We don't what causes CFS/ME so coming up with a biochemical reason is in a way a little pointless, however, if you want a biochemistry theory, research tends to focus on mitchodairal disfunction as being the potential main issue with CFS/ME. Thiamine is intimately involved with mitochondrial development/processes, another possible reason it could help is that it helps the body's cells change carbohydrates into energy, it is essential for glucose metabolism.

I don't think Thiamine will help everyone, basically remove symptoms entirely for even fewer, however, it seems to be worth a shot because it does seem to cause drastic improvement for many. It doesn't cost much (unlike most of the potions on the forum) and taking large amounts is not thought to cause any health effects whatsoever.

 

[kiwis]

some more theories on why thiamine may help in the original article I posted https://www.healthrising.org/blog/2021/04/15/thiamine-b-1-chronic-fatigue-syndrome-fibromyalgia/

 

[Husband of]

I have been taking Benfotiamine for a very long time, many years, probably over 10 at doses of 600mg and now 500mg/day. I take it for it's benefit to AGE (Advanced Glycation End products). It is difficult to say if there is any help to my ME seeing as another treatment virtually eliminates most of the adverse effects of ME.

B1 is not a cure and it does not address the cause which lies in the digestive system.

Sorry it wasn’t clear whether AGE was the treatment that virtually eliminated your adverse effects of ME, or if it is something else. Could you please advise.

 

[vision blue]

I

I have read some success stories particularly with more absorbable forms of thiamine like allithiamine, benfotiamine and sulbutiamine, "

occured to me when reading the other forms you list, they all end in amine and then realized ive never really looked up what thi-amine actually is. Since you know a bunch about it, would you know if its related to bigoenic amines at all?

 

[L33255]

Hi All,

Has anyone gone into long-term complete remission through high-dose Thiamine supplementation? were/are you a heavy drinker?

Due to the positive outcomes in clinical studies (https://www.healthrising.org/blog/2021/04/15/thiamine-b-1-chronic-fatigue-syndrome-fibromyalgia/) and the poll results on this board (https://www.healthrising.org/blog/2...-fatigue-syndrome-benefit-high-dose-thiamine/) where 2/3 of voters experienced large benefits, I started taking Thiamine mid-way through last year and have not had PEM since.

2nd question- Why do people on this board talk constantly about essentially all these other vitamins/potions/trinkets/nutrition but never really about Thiamine? I am wondering if those who successfully take Thiamine go into remission and then stop posting?

Hi, jumping in a bit late to the thread, but wanted to weigh in because thiamine greatly helped me. In the past I had issues with drinking too much and actually found that thiamine not only helped with my symptoms but also helped me cut back on drinking to the point where I don't find it problematic anymore.
As others have brought up, thiamine is already a topic of discussion here, but I also believe that it could merit further attention. In my experience, there was quite a difference between taking "normal" amounts and megadosing. I really saw a difference from consistently taking large amounts of thiamine over a long period. Those effects may not be achievable at low doses.

 

[Wishful]

Based on this thread, I did give thiamine another try. 100 mg 3x a day for a couple of weeks had no noticeable effect.

The funny bit was, I expected it to be easy to find, but in the Walmart 'aisle of vast array of supplements', there was only one brand of B1 available. I guess it's not a fashionable supplement right now.

 

[hapl808]

Has anyone gone into long-term complete remission through high-dose Thiamine supplementation? were/are you a heavy drinker?

Which version of thiamine are you taking?

 

[L33255]

I also wonder if the kind of thiamine or the dose may affect its effectiveness.
Maybe it's helpful to post about my own experience here for reference:
Based on Izabella Wentz's Hashimoto's Protocol, I took 600mg/day for several months and up to 1g/day based on pain level, then decreased over time as the need decreased. I only stopped taking it daily after about a year.
I took various different brands over time, but know for sure I took the Jamieson b1 for quite a while. That is listed as thiamine mononitrate.
This video is what got me on to high dose thiamine and he gives some potential explanations of why/how it works and why lower doses may not do anything:

Izabella Wentz has some relevant information about b1 and some pointers on dosage here:
https://thyroidpharmacist.com/articles/thiamine-and-thyroid-fatigue/
She recommends using benfothiamine, although I didn't personally notice a difference with that compared to the other forms I have tried.