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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. T

    Air Hunger & Tachycardia Return - Help?!

    Speaking purely from my own experience, most of the time air hunger and elevated heart rate etc is a function of low folate or potassium. Very occasionally though I find that a good dose of b2 alleviates it. I personally do better with r5p but it can also then drive up methylation levels and...
  2. T

    Modafinil while on a methylation protocol?

    https://bengreenfieldfitness.com/2014/11/smart-drugs-vs-nootropics/ They discuss Modafinil's side effects from 6 minutes into the podcast.
  3. T

    Modafinil while on a methylation protocol?

    I couldn't agree more. Niagen and NADH (sublingual) have been game changers for my energy levels in addition to methyl donors. When I experimented with Modafinil, it made me feel great but I had huge anxiety hangovers afterwards and histamine rashes. I seem to remember hearing a pod cast from a...
  4. T

    Modafinil while on a methylation protocol?

    Modafinil isn't a stimulant, it's a wakefulness agent (sounds like a marketing slogan!!). It antagonizes histamine and given that so many have histamine issues on methylation protocols I would be very wary of it. If you break out in a rash, discontinue immediately. Steven Johnson's syndrome...
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    Methylation supplements treat insulin resistance

    Wow I had no idea inositol deficiency could problems of that degree. I can't take alpha lipoic acid or any of those anti inflammatory type supplements like pine bark extract or grape seed extract. They are hypoglycemia in a bottle for me.
  6. T

    Methylation supplements treat insulin resistance

    Yeah it really does contain some profound information, ticks many boxes for me. I have, in the past been diagnosed with menieres disease (even though I'm sure I was misdiagnosed) and when they mentioned the blood sugar connection, I was stunned. I'll be pushing my doctor for a Kraft style 5 hour...
  7. T

    Methylation supplements treat insulin resistance

    I started posting on a prominent diabetes, hypoglycemia forum today and someone pointed me to this; Very interesting indeed.
  8. T

    Methylation supplements treat insulin resistance

    When I did my GTT; (mmol/L) my fasting glucose was 3.6 with the "normal" limits set at 3.6 to 6 my 1 hour glucose was 3.8 with the "normal" limits set at 3.6 to 11 my 2 hour glucose was 3.6 with the "normal" limits set at 3.6 to 7.7 My insulin levels were a very normal 8. So...
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    Methylation supplements treat insulin resistance

    This explains glucose oxidation with regard to atp generation etc; http://www.ncbi.nlm.nih.gov/books/NBK21624/ Just before posting I was reading this; http://www.arltma.com/Articles/HypoDysDiaDoc.htm "This type of hypoglycemia can readily be brought on by certain foods or activities that...
  10. T

    Methylation supplements treat insulin resistance

    I'm just starting down the road of understanding insulin, glucose oxidation and assorted metabolic problems, which given my recent glucose tolerance test and history of symptoms seems to be central to the fatigue/neuropathy and neurological issues I have had throughout my life. I seem to have...
  11. T

    B1 induced deficiency

    Your definitely onto something here, I have had hypoglycemic issues since I was very young (can remember having hypo as young as 7). I'm currently undergoing some testing on my endocrine system and will chime in if anything becomes obvious with regards to b1 and potassium etc. I've never been...
  12. T

    B1 induced deficiency

    Cheers, you too. Keep us posted.
  13. T

    B1 induced deficiency

    Not sure, but the reality is that I have seen vast improvements with no change whatsoever to magnesium, sodium, calcium and phosphorus supplementation. All I have done is take benfo and switch to potassium chloride. I don't think you have to stop taking potassium gluconate, just give it as...
  14. T

    B1 induced deficiency

    I guess the question is whether it's possible that potassium gluconate, while not affecting blood sugar, "fools" whatever mechanism glucose uses to deplete thaimine into thinking you've just ingested glucose and therefore causes thiamine depletion. Something to do with the "gluconate bond".
  15. T

    B1 induced deficiency

    Forgive me if my lack of scientific knowledge is on display on this one, but does potassium gluconate need to influence blood sugar levels to deplete thiamine, is it definitively a reaction to higher blood sugar or some other interaction?
  16. T

    B1 induced deficiency

    I wouldn't doubt that in your case and possibly mine and many others that phosphorus is a factor, I'll continue to monitor my benfotiamine dosage and see if that tired, achy feeling comes back. I'm not saying that you shouldn't use potassium gluconate, once thiamine levels are restored I would...
  17. T

    B1 induced deficiency

    Apologies if I spoke as if this is a matter of fact. I'm not sure of the mechanism by which glucose depletes thiamine, I'll do some research into it and try to understand it but from what I have read it's pretty widely accepted. I would doubt that I can find evidence of the same mechanism being...
  18. T

    B1 induced deficiency

    Indeed it is, as @Gondwanaland alluded to, this problem starts and ends with potassium gluconate. Even though it doesn't contain carbs (glucose), it still inhibits thiamine in the same way as sugar does. So you get stuck in a viscious cycle, taking methylation supps drains potassium, you...
  19. T

    B1 induced deficiency

    Wow, great thread, I wish I had of found it earlier. It seems that the key to this is balancing folate, potassium and thiamine........to begin with. Given that you and the others involved on that thread have some perspective, how would you go about treating this and finding the...
  20. T

    B1 induced deficiency

    That Charles Weber article is very informative and scary at the same time. I'm glad I caught this pretty early on and am responding to treatment. I upped my benfotiamine dosage today and am definitely a little tired and achy, some extra folate helped but I'm thinking more isn't a good thing in...
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    B1 induced deficiency

    Awesome find @dannybex, I need to read that very carefully but from a quick skim it seems to support my theory of potassium being a significant factor. I get very dry skin and hands (very hard cuticles and sharp nails) when my histamine levels elevate (I assume it's histamine), dry sore eyes...
  22. T

    B1 induced deficiency

    Hi @helen1 , @Mary You pretty much hit it on the head @helen1 , the biggest speculation is the involvement of potassium, it's hard to figure out whether it was because I had too much or not enough or wasn't absorbing it properly for some reason. It certainly had nothing to do with sodium or...
  23. T

    B1 induced deficiency

    Hi all Over on Freddd's reefeeding syndrome thread, Mary, Anna Dove, @Freddd and myself have been discussing the role of thiamine in all this, which led me to do some more research and I was hoping for some help to connect the dots. This all started when I had the great idea of trying to use...
  24. T

    REFEEDING SYNDROME - The clues to healing via induced deficiencies

    I know it goes without saying Freddd , but your literally a gold data mine. It wasn't through your protocol that I kick started my methylation system after 8 years of methotrexate (did that by accident), but your protocol and the information surrounding it definitely dragged me out of the...
  25. T

    REFEEDING SYNDROME - The clues to healing via induced deficiencies

    In Australia, the reference range for "normal" b12 levels are 135-650 pmol/L and no further active b12 testing is approved unless lower than this. In Japan they changed it in the 80's to 500 – 1300 pg/mL. It's no wonder we're all "do it yourself lab experiments".
  26. T

    REFEEDING SYNDROME - The clues to healing via induced deficiencies

    Originally, I took 1 enzymatic therapies Riboflavin (400mg) and Doctor's Best Benfotiamine (300mg) on top of the 2 Source Naturals coenzymated b complex I was having. I can handle pretty high doses of DQ supplements and was on something like 30mg of methylcobalamin, 8mg of metafolin and 8 mg of...
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    REFEEDING SYNDROME - The clues to healing via induced deficiencies

    Great find!!! This is critical to my progress at the moment. I feel amazing, when adding b1 and b2 to my usual deadlock quartet, until a few days later and then hypokalemia kicks in and is almost insatiable. Ever since my original experiment with adding b1 and b2 (very large amounts) I haven't...
  28. T

    Some guidance, please

    This is a pretty good place to start I think http://forums.phoenixrising.me/index.php?entries/my-understanding-of-freddds-protocol.1697/ Personally, I'm C677T heterozygous and yeah, Australia really sucks for trying to get methyl supplements. I can't say I've ever really been able to identify...
  29. T

    Lowering over methylation without niacin?? Please help!!

    For what it's worth, one of the main symptoms of low b12 for me is a loss of appetite (oh and feeling like total crap). Might be worth taking a methylcobalamin sublingual or two to see if it makes you feel a little better.
  30. T

    Lowering over methylation without niacin?? Please help!!

    Given that many of the problems associated with overmethylation are due to neurotransmitters going into over drive (seratonin, norepinephrine) maybe we should be looking to balance neurotransmitters as part of the treatment protocol. From what I have read, neurotransmitters affect one another...