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Significant Improvement Story -- Focus on Thiamine Deficiency

Discussion in 'General Treatment' started by Wayne, Jul 3, 2013.

  1. Sasha

    Sasha Fine, thank you

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    Well, I just worked up to 3 days on 1,800mg and have seen no effects (very broken sleep the last couple of nights, though, so maybe that's due to this dose) so am giving up.

    How's everyone else doing?
  2. ukxmrv

    ukxmrv Senior Member

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    I tried lower doses of B1 when there was an earlier thread on PR and gave up after a couple of months as no effect that I could see.
    When the new paper came out I decided to try again. As there was a comment on body weight and I'd tried up 400/600mg ? before I started at 800mg and increased to 1000mg over week.

    Wham - brain fog and severe fatigue set in the next day. I was very weak and could not think straight or understand a conversation. Stopped the B1 and restarted a week later. Same thing happened after a few days at 800mg this time. I took the B1 at night this time to see if I could sleep through the bad effects but I overslept for several morning and felt like death when I woke up and all through the day.

    Not sure what this could mean. I do have a FM dx as well as a ME one.
    Sasha likes this.
  3. Questus

    Questus Senior Member

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    Be aware of taking high B1 doses if you hava a SULFA ALLERGY. Thiamin, or B1 contains sulfa, (link below).

    I have an extreme allergic reaction to sulfa, and started B1 at 100mg a day without a problem. When I increased to 300mg a day, I got the kind of extreme deep muscle pain and headache I associate with sulfa allergy. Just wanted to share this. This may explain what's going on with others who have a negative response with higher doses.

    Thiamine or thiamin or vitamin B1 (/ˈθ.əmɨn/ thy-ə-min), named as the "thio-vitamine" ("sulfur-containing vitamin").. https://en.wikipedia.org/wiki/Thiamine

    This website talks about sulfa issues with B1. B1....http://www.behcetsuk.org.uk/reference/sulfur/sulfursulphidesulphate.html B

    oBoth Vitamin B-1(Thiamine) and Vitamin H (Biotin) are sulfur based and thus very high in sulfur, as are the above mentioned Amino Acids.
    th Vitamin B-1(Thiamine) and Vitamin H (Biotin) are sulfur based and thus very high in sulfur, as are the above mentioned Amino Acids.
    Helen, Sparrowhawk, Mog and 2 others like this.
  4. ukxmrv

    ukxmrv Senior Member

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    A ha!

    Thank you. I have a problem with Sulphur in foods so maybe that is a more general thing for me and caused the severe effect with a higher dose.

    Nothing is ever straightforward with trying to treat this disease. Maybe the FM patients in that study don't have these problems of being sensitive to drugs and supplements?
    Sparrowhawk likes this.
  5. Mog

    Mog

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    Maybe I should have read this thread before starting my B1 experiment :( Oh well.
    I do have problems with sulfa so that might explain why it's not worked for me and why I've been getting a lot of headaches on it. I came on to ask if it could be causing headaches / migraines, but I guess I've found my answer. Also, somebody above said something about it not being good for low thyroid, and I am hypothyroid, although taking thyroxine for it.
    I wasn't feeling good, in relapse mode to start with, but thought maybe the B1 would help improve me. I've been taking 100mg tablets and upping the dose by a tablet per day. I'd made it up to 1100mg a day but have now stopped, because I was getting headaches every afternoon, after taking half the dose at lunch, and then migraine headaches in the evening, after taking my other dose with my evening meal. I'm now presuming the headaches were a side-effect of the B1 (although I do get a lot of headaches / migraines generally).
    I didn't notice any improvement in the way I felt otherwise, no increase in energy and no effects, good or bad, on sleep. So I think that's the end of my B1 experiment.

    Should have known it was too good to be true :( and too easy :( and too cheap ;)

    PS I have taken 100mg B2 every day for several years, and I think it has lessened my incidence of migraines. And I'm currently not taking a B complex, although I know you're not meant to take the Bs in isolation
  6. Questus

    Questus Senior Member

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    Was rereading a bookmarked article on this, and it sums up the B-1 thiamine and sulfur connection this way, and the sulfur content in some amino acids.

    Pasting:
    Sulfur is found, naturally, throughout the whole body as evidenced and verified by Vitamin B-1 (Thiamine) and Vitamin H (Biotin), One Essential Amino Acid (Methionine) and Two Non-essential Amino Acids (Cyestine and Cystine) and can be found stored within the connective tissues.
    Both Vitamin B-1(Thiamine) and Vitamin H (Biotin) are sulfur based and thus very high in sulfur, as are the above mentioned Amino Acids.

    Am mentioning this because sulfur is not only high in B-1 but also in three amino acids and Biotin.

    http://www.behcetsuk.org.uk/reference/sulfur/sulfursulphidesulphate.html

    Best,
    Questus
    Helen, Mog, Wayne and 1 other person like this.
  7. Mog

    Mog

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    Thanks Questus. That would also explain why Biotin didn't agree with me when I tried it recently for gut problems.

    If you have a sulphur problem, is it permanent, or is it something that will improve if can get your general health to improve?

    As a PS to what I wrote above, I think actually that my sleep was deeper and less disturbed when I was taking the higher dose of B1. I see other people saying that it has improved their sleep. I always thought the B vitamins woke you up, rather than sending you to sleep?

    I got up to 500mg before starting to react badly to the B1.
  8. jimmy86

    jimmy86

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    any long-term effects?
  9. Lynn

    Lynn Senior Member

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    After 6 weeks on B-1, I am sticking at 1500 mg. It definitely is making a difference in my activity levels. Unfortunately, it does nothing for PEM. A few days ago I did a chair yoga class. Three days later, I still have not recuperated. But I expect by tomorrow, I will be okay and will try it again.

    The biggest difference on the B-1, is my ability to stand upright for extended periods of time (standing at the counter and cooking). My husband thinks that my cognitive ability is increasing and that my vocabulary is returning.

    I am bummed about the PEM because I want to do so much more now. I'll let you know if anything changes.

    Lynn
  10. aquariusgirl

    aquariusgirl Senior Member

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    I need a contact email addy for yhe Italian researchers on the B1 paper
    can anyone help?
  11. aquariusgirl

    aquariusgirl Senior Member

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    Also what forms of B1 are folks taking?
  12. LisaGoddard

    LisaGoddard Senior Member

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    I tried the Source Naturals B1. In the end, I had to give up because it would initially make me sleepy, then wired, then tired. All within a few hours!
    If you are in the UK and want to try to Source Naturals then I would be happy to post it you.
  13. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I am currently taking thiamin mononitrate because it was what I could find fairly close to home.
  14. howirecovered

    howirecovered Senior Member

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    I've been taking 480 mg of benfotiamine... will try increasing it.
  15. Lynn

    Lynn Senior Member

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    You can get Dr. Constantini's e-mail address from the abstract of his study on PubMed. Here's the URL for the abstract: http://www.ncbi.nlm.nih.gov/pubmed/23696141

    He answered my email.

    Lynn
  16. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Since benfotiamine is fat soluble, does it need to taken more than once/day?
  17. howirecovered

    howirecovered Senior Member

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    even if it doesn't, wouldn't dividing it smooth out your experience? I tend to divide everything...
  18. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    That is what I am not sure about. If the body can store it and release it as needed, more frequent doses might not smooth it out.

    I also tend to divide everything. As 'everything' becomes bigger, the number of pills that I am taking is getting cumbersome.
  19. rebar

    rebar

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    Dose is what matters, I have not read of any who have divided it, but determining the beneficial amount comes first.
    I started out with 1000mg's of B1. It helped a great deal for about 2 months. At about the 6th week I started to bump
    it up adding 100mg's every few days reaching 1300. My logic was that I could tweek the amout and squeeze a little more out of the treatment. I crashed. I then reduced the dosage back to 1000, which didn't help. I believe it was a combination of the increased activity and my screwing around with the dose. Not sure but I believe the crash lasted about a month, 5 days ago I dropped the dose to 500. On the morning of the 3rd day l noticed I felt like I did when the 1000mg dose kicked in. The efficacy "window" seems to be narrow and may change over time. Even during my crash I was at a higher point, when comparing low points, than before I started B1. I have no doubt about the positive effect it has on me.
    Little Bluestem likes this.
  20. Sparrowhawk

    Sparrowhawk Senior Member

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    Really interesting regarding the B1 dosing for you.

    This seems to square with what I was reading this weekend by Fredd and on howirecovered's blog -- things change and you may have to adjust the dosages of mB12 and related supplements. And someone whose wife was helped by Fredd's protocol talked about reaching a certain level and then being able to back the dosage down -- while still holding the benefit. Perhaps it's a matter for these B-class vitamins of reaching saturation/healing and then you go to a maintenance dose...at least for those for whom the approach works.

    My takeaway from almost everything on the PR board is "some things work for some people some of the time" -- not very take-to-the-bank certainty I know but it still gives me hope that if I try a few of the options, with the low and slow approach, I might find something that can help. Until then I'm doing pacing and diet, and really minor supplementation.
    howirecovered likes this.

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