Thiamine, vitamin B1, is it a cure?

[L33255]

I forgot to include this info from Wentz from the same page I linked to, which is an important caution:
"Thiamine supplementation should be avoided by those with advanced cancers because tumors may steal the body’s reserves of thiamine and use it to proliferate themselves, as thiamine is necessary for cell replication. If a person has thiamine deficiency and cancer, I would advise working with an integrative cancer specialist, because the dose response of thiamine has an interesting pattern in those with advanced tumors."

 

[Husband of]

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?

I don't understand what you mean when you say no PEM. Are you saying you still have MECFS but if you somehow manage to exert yourself despite not having much energy that your symptoms won't As a result be exacerbated at some point afterward ?

 

[tcamde]

I got very good results from benfothiamin, but after 2 months it just stopped working. I try it again from time to time but it has no effect on my fatigue anymore. It’s helpful for neuropathy though.

 

[Artemisia]

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.

What's your dose and form and brand of B1?

 

[acrosstheveil]

you only need a small amount of Allthamine/TTFD compared to thiamine hcl. I don't recommend taking 1800 mg of TTFD. you will have a bad time.

 

[Judee]

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

EGAD

you only need a small amount of Allthamine/TTFD compared to thiamine hcl. I don't recommend taking 1800 mg of TTFD. you will have a bad time.

That has become my understanding as well that the Allithiamine is much more potent so needs to be taken in much smaller doses.

 

[Aidan Walsh]

Could this be helping some that have instead Basal Ganglia Thiamine Biotin Deficiency? A Genetic Illness?

 

[Aidan Walsh]

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?

Kiwis, what exactly is the name brand of thiamine you are taking now? Dosage amount? With food or not & am or pm? Are you now fully completely recovered? no illness at all? thanks

 

[ruben]

Hello. I have began taking thiamine recently, 300mg daily. Probably a couple of weeks on it. Can't say I've noticed anything so far. What should I be prepared to take my dosage up to as a maximum. All opinions very much appreciated.