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Significant Improvement Story -- Focus on Thiamine Deficiency

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

  1. dannybex

    dannybex Senior Member

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    Dreambirdie -- I was diagnosed as thiamine deficient very early on -- 12+ years ago. I don't know if I am now, but I assume so, mainly because of my inability to produce stomach acid, and the need for less HCL since starting the thiamine. Also, I've been eating waaaaay too much white rice over the years, something that depletes thiamine big time. I ate brown rice as well, but mostly white...am now trying other things. Hindsight is always...you know...

    That's a good sign that you were able to tolerate it! :)

    As for Wahl's diet -- it's great that it worked for her, but she must have had the right bacteria, etc., in order to handle all those high, high oxalate foods she was insisting everyone eat (or drink). ???

    edit: I've been taking 3 or 4 a day, but then cut back, due to budgetary constraints. :(
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  2. globalpilot

    globalpilot Senior Member

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    There is a test for thiamine deficiency (functional) called the transketolase test. King James Laboratory does it - there may be others I'm not sure.
    I met a woman online years ago with CFS who developed edema. For some reason, this led her doctor to test for functional B1 deficiency via the above test. She had it and injections took away her fatigue (supplements did not). I had the test done myself after hearing her story and was able to rule it out for myself.

    A very worthwhile test to do.
    Nielk and Dreambirdie like this.
  3. Dreambirdie

    Dreambirdie work in progress

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    globalpilot What are the top worst symptoms of thiamine deficiency?
  4. Dreambirdie

    Dreambirdie work in progress

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    VERY interesting, Mr Dan. :nerd:

    I, too, ate a lot of white (basmati) rice back in the 90s... and I also had issues with insufficient stomach acid (which caused fermentation in my gut, severe migraines and vomiting for nearly 10 years). I began taking Betaine HCl in 97, and it instantly changed my digestion for the better and completely eliminated my migraines. At this point, I have enough stomach acid, and can't tolerate any Betaine HCl. It gives bad heartburn. So maybe thiamine is not an issue for me... ???

    I agree that the Wahl's diet is excessive when it comes to how many vegetables (especially greens!) she recommends eating each day. I can tolerate a lot of collards and kale, but I can't eat a mountain on a daily basis. It's just too much. The general principles, though, have worked well for me. I eat a modified paleo diet, with some grains and potatos, and even a little dairy, and I do well with that.

    Keep me posted on how you do with the thiamine. I'm particularly interested in knowing if there are any gnarly and nasty DETOX effects. As you know, several supps (manganese, B2, methylB12, folate, TMG, molybdenum, zinc and others) have brought that on for me. I'm not in the mood to experiment anymore with anything that can throw me into another detoxification tailspin.

    Good luck with it! I hope it helps.
  5. globalpilot

    globalpilot Senior Member

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    I'm not sure Dreambirdie and it's been a long while since I corresponded with this lady.
    But she had horrendous fatigue and her food felt like it just 'sat there' in her words.
    Later on, the edema developed. She probably had other symptoms too that I have forgotton.
    Dreambirdie likes this.
  6. Sasha

    Sasha Fine, thank you

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    I've emailed Source Naturals with this question - I'll post here if they answer.
  7. alex3619

    alex3619 Senior Member

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    I first read about ME and thiamine in about 1990, in Charles Shepherd's book Living with M.E. iirc. A patient started taking lots of thiamine and got better. Its been a long time since I read it though.

    My protocol in 1998-9 had 200mg of thiamine in it. This was the protocol that restored much of my energy before the side effects kicked in (including severe headaches), but didn't really touch fatigue. I was going to start testing thiamine again a while back, along with adenosyl cobalamin, but wound up in hospital instead.
    merylg, Wayne and Sasha like this.
  8. LaurieL

    LaurieL Senior Member

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    I would like to contribute my experience with thiamine. I take it everyday day since starting the methylation protocol and finding I could not tolerate B-complexes. It was another vitamin in which I found I could not do without. Looking at my bottle, it is only a mere 100mgs. My whole purpose mirrors what danny said about gut bacteria, either the imbalance caused by the bacteria, their ability to steal it, or the complete lack of bacteria that synthesize it, led me to splitting the B complex main contributors associated with gut bacteria, into single, controlled doses.

    As far as water soluble versus fat soluble. My thinking is that dont most of us have a fatty acid issue? In light of this, I have heard that fat soluble would not then be tolerated by individuals with problems in fatty acid transport. Add in mitochondrial issues, and there is reason number two for me. And the reason I chose water soluble over the Benfotamine. I am all for the bioactive vitamins on most, but this is one in which I have not needed bioactive. Just food for thought if you are interested.

    LaurieL

    I wanted to add this, as I think it could be important in consideration. I also thought many of us have phosphate problems?

    Thiamine is released by the action of phosphatase and pyrophosphatase in the upper small intestine. At low concentrations the process is carrier mediated and at higher concentrations, absorption occurs via passive diffusion. Active transport is greatest in the jejunum and ileum (it is inhibited by alcohol consumption and by folic deficiency).

    The majority of thiamine in serum is bound to proteins, mainly albumin. Uptake of thiamine by cells of the blood and other tissues occurs via active transport and passive diffusion. About 80% of intracellular thiamine is phosphorylated and most is bound to proteins. Thiamine and its acid metabolites (2-methyl-4-amino-5-pyrimidine carboxylic acid, 4-methyl-thiazole-5-acetic acid and thiamine acetic acid) are excreted principally in the urine. Thiamine is mainly the transport form of the vitamin, while the active forms are phosphorylated thiamine derivatives.

    pathman
    Wayne likes this.
  9. Moxie

    Moxie

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    Interesting. I was found B1 deficient (serum test, not functional) last summer and have been supplementing since. Now that I think about it, I don't think I've ever been re-tested to see if my serum level is up.. And I'm only taking 100mg/day. I'll experiment with higher doses. Unlikely to hurt/might help!
  10. Wayne

    Wayne Senior Member

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    Preliminary Report

    I bought some NOW brand B-1 100 mg yesterday, and took 300 mg right away. It made me slightly nauseous, but I was able to get beyond that by eating until the nausea went away. So even though it was a water soluble form, it might be best to supplement with meals instead of taking it on an empty stomach.

    I slept longer than normal for my afternoon nap, and woke up with a bit of an unusual headache. But I then proceeded to have a better than normal evening, feeling a bit more relaxed than normal. Slept in this morning, which is very unusual, and have been trying to pull out of my "sleep in funk" ever since. We'll see how it goes.

    As I was reading the posts on this thread this morning, I remembered a post on the ProHealth board a couple years ago by a man who had gotten significant improvement from taking biotin [that post is no longer there]. I was so impressed by it, that I copied and pasted it here on this forum. Just read it again, and was again impressed by how a single nutrient can have such profound implications for some pwCFS. Interesting how it so often revolves around proper B-vitamin absorption and/or synthesis in the gut, implicating a dysfunctional environment in the GI tract. --- Anyway, here's that Biotin testimonial for anybody who might be interested
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  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Wayne,

    I also take biotin and I think it is important but can't say I've noticed anything from it! :confused:

    Sushi
  12. Ema

    Ema Senior Member

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    Sushi

    Do you find that the biotin lowers your cortisol levels?

    Ema
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Ema,

    I haven't checked my cortisol levels in a while, so I don't know.

    Sushi
  14. Dreambirdie

    Dreambirdie work in progress

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    I have taken biotin on and off for years and haven't noticed any increase in energy from it. What I do notice is that it helps my fingernails from splitting. As soon as I stop the biotn, they crack and split much more easily.

    I'm not sure if it's a good idea to be taking just one of the B vitamins in isolation, unless there is a very clear specific deficiency. I have heard many times now that it's best to take all the Bs together in a B complex, but WHICH B complex is the most balanced is always up for debate around here.... :nerd: sometimes LONG and endless debate! :ill:

    I am going to try the B1 again and see if I notice anything this time. Last time I took it, it made no difference.
  15. Wayne

    Wayne Senior Member

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    I just did search on the ProHealth board for "thiamine" in the extensive thread over there entitled, "What Worked For Me". I only came up with one post [out of almost 500], but it was quite interesting. It was a fairly lengthy post which listed 18 different supplements that were apparently successful for this person. Three different B vitamins were in her first six recommendations. --- In #2, she lists her favorite forms of thiamine. Here's a link to the entire post with all 18 recommendations.

    March 25, 2008
    Sasha likes this.
  16. A.B.

    A.B. Senior Member

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    It's the third day of my high dose thiamine test. I've already taken 1g today and will take another 0.5g later.

    The initial impression is positive. I have enjoyed a feeling of relaxation which I attribute to the thiamine. Mood has also been good since the start of the test. Chronic fatigue hasn't changed. I had mild flush and increased body temperature in response to the first dose but not to the subsequent ones.

    PS: I have also found some literature that's relevant to the topic:
    Pharmacokinetics of high-dose oral thiamine hydrochloride in healthy subjects

    Wayne and Sasha like this.
  17. alex3619

    alex3619 Senior Member

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    My 1998 protocol was an antioxidant and B vitamin protocol with some select minerals including chromium, zinc and magnesium. Biotin was in it because I too had noticed an improvement on biotin. The improvement I got wasn't huge, but it was enough to combine it with the other things I felt better on.
    Wayne likes this.
  18. Lynn

    Lynn Senior Member

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    I read the blog on Wednesday. I bought some 300 mg tablets of B-1 yesterday and took one. It was the best day I have had in years.

    I found myself standing at the counter while making dinner and looking things up on my computer. My husband said "Are you standing while browsing?" I said, I guess I am (standing is not usually my best thing). We then talked about the last time he had seen me with so much energy. He said 1996. It teared me up a bit.

    I'm only on day 2 so I can't tell you that it will keep working or if it will plateau and no longer help. But I am very optimistic. Hard to believe 17 years of my life could be gone due to a vitamin deficiency. But wouldn't it be grand to finally have an answer?

    Lynn
  19. Sasha

    Sasha Fine, thank you

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    Wow - that's great, Lynn! I hope it keeps working.
    Wayne likes this.
  20. Sasha

    Sasha Fine, thank you

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