Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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B1 markedly improving energy and sleep

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Mary, Mar 8, 2016.

  1. Mary

    Mary Senior Member

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    After a rather rocky start, I seem to be tolerating B1 (in the form of benfotiamine) quite well. I react very strongly to it. My energy (in between crashes) is a lot better, and I'm sleeping more soundly and going back to sleep more quickly than I have in years. Whether it will end up helping with PEM remains to be seen.

    When I initially tried taking B1 some months ago, it gave me a big boost of energy and then dropped me down. It was very frustrating and eventually I discovered the causes (I think). Based on Freddd's posts and my subsequent reading re refeeding syndrome, I'm just about certain the B1 caused hypophosphatemia (sort of like folate caused my potassium to tank). Much of my post-B1 fatigue went away after adding in kefir/yogurt (high in phosphorus) and a low dose of monosodium phosphate (about 750 mg.)

    But I was still stuck, could not get all my energy back and then theorized the B1 was depleting one of the Bs, but which one? I did not feel like experimenting, I'd reacted badly to B2 before, and then had the idea to try brewers yeast which I figured might have the B vitamins in a better ratio than my B complex. And that seems to have solved the problem.

    I've been on benfotiamine for about 2-1/2 weeks now, working my way up gradually from 1/4 of a 150 mg. tablet to a full 150 mg. a day (I break the tablet in half, 75 mg. twice a day)

    The only downside now that I can see, and I don't know its significance, is that it has raised my BP some 20 points or so. It's been up in the 140's over 80 something. It was always before 120 something over 70 something. I don't know why, but am not worrying about it.

    It's still a work in progress, but again, the increase in energy is amazing, although in a way I have to be more careful now not to crash when I have energy to do more things! :confused: I also take 1600 mcg. methylfolate and 5,000 mcg. sublingual methylcobalamin, plus 100 mg. B6, and a ton of other stuff, oh, and 500 mg. pantothenic acid every other day.

    And I think it increases my need for potassium a little, but not a lot like the folate did. So am trying to stay on top of that too!
     
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  2. Bansaw

    Bansaw Senior Member

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    I think B2 sublingual FMN gave me a noticeable boost.
    I had been taking B12 Adeno and Hydroxo for a couple of months prior, and resting. Then I added B2 and felt better, so I did some aerobic exercise which I'd not done for six months, and I felt very little PEM.
    I am also taking B1 and B6 hcl in bulk supplement but not noticed anything there with those two.

    Ps: why benfotiamine? there is a sublingual B1 cocarboxylase...
     
  3. Gondwanaland

    Gondwanaland Senior Member

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    I think it stimulates thyroid
     
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  4. Mary

    Mary Senior Member

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    I read about the sublingual B1 and it only comes in a very small dose. Also, the benfotiamine is supposed to help with high blood sugar. My blood sugar is borderline high (near the top of the normal range), despite a very strict diet, hardly any sugar or white carbs or anything like that. Actually, I think thiamine in general helps with blood sugar, and it appears I have been deficient because it makes me feel so much better, and this may be the cause of my highish blood sugar, and hopefully will help bring it down. (being able to exercise would help also!)

    I had a bad reaction to B2 a couple of times, after reading how it had helped many people, so gave up on it. But I love the B1! :D So it would seem we all have different deficiencies or weaknesses.

    Here's an article which talks about some of the benefits of benfotiamine: http://www.lifeextension.com/magazi...on-High-Blood-Sugar-With-Benfotiamine/Page-01
     
  5. Mary

    Mary Senior Member

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    That could very well be. I may have to adjust my thyroid med. Thanks for the suggestion!
     
  6. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    That increase in blood pressure might be worth talking to your doctor about.

    Now that you are taking B1, you may be able to tolerate B2.
     
    Gondwanaland likes this.

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