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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. N

    Benfotiamine - a double edged sword due to sulfur sensitivity

    I found that taking thiamine (allithiamine) and molybdenum enabled me to taking sulphur based supplements again and generally tolerate sulphur foods better.
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    Instantaneous effect from Methylfolate/B12?

    @GreenMachineX You need more folate! I thought that from reading your first post. Hold the amount of B12 and increase folate. Be prepared for the donut hole and have potassium on hand!
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    Instantaneous effect from Methylfolate/B12?

    Thanks @Freddd . So I need to ask you a little more about folic acid and folate, because I am a little anxious about this (but not as much as I used to be, lol). You said that the maximum convertible by 50% of people is 800-1000 mcg of folic acid. I am taking folate - is all of that convertible...
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    Instantaneous effect from Methylfolate/B12?

    @Freddd I have returned your protocol after a few years, and this time I have heeded your advice to 'go big' on the methylfolate. The first day I fell straight into the donut hole, which kind of confirmed that theory for me. When I hit 10mg of folate, angular chelitis and canker sores suddenly...
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    Views on B12--Greg (B12 oils) view vs Rich Van's view--Thoughts?

    Hello @aquariusgirl. Can you tell me what you think was a mistake - getting methylation going? I beat you to the oxalates - been there, done that. There is no doubt I have an oxalate problem, but focusing on just one aspect of a multi-faceted problem - chelation, methylation, sulphur...
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    Views on B12--Greg (B12 oils) view vs Rich Van's view--Thoughts?

    It seems suitable for me to chime in, as I am on the same journey here. Brief history: mercury toxicity from 13 amalgams, POTs, gallbladder / liver issues, burning mouth, hypothyroid. Amalgams removed 13 years ago, chelated on Cutler protocol but only DMSA as I never tolerated the ALA, so much...
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    Unfolded Protein Response and A Possible Treatment for CFS

    I am trying Tudca and choline to calm down what appears to be a very angry gallbladder following a spell on antihistamines (anticholergenics) which added further insult to an already under-methylated gallbladder. I have been taking 2 x 250mg Tudca and choline a day for about a week. Today I...
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    B12 deficiency getting worse despite SMP

    Hello all I have lurked for a while around here, tried Fredd's and the SMP protocol several times. Big potassium problems saw me cut doses right back to 400mcg of metafolin and 2mg of the Enzymatic B12 a day, I also take 4gms of Potassium a day, along with magnesium, carnitine, flax seed oil...
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    B 12 and palpitations

    I had a terrible night last night!! My low potassium symptoms kicked in big time in the evening, and basically kept me up all night with rapid heartbeat, flickering adrenals, and foot cramps. I must have taken about 6 or 7gms of potassium last night over the course of a few hours, which would...
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    B 12 and palpitations

    Hello all I am a lurker, trying the active B12 protocol for the third or fourth time now. Each previous time I was been blown off by low potassium symptoms, as I see now, but didn't then. This latest attempt (now 2 weeks old) has gone really well - massive boost in energy, optimism, the...
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    Methylcobalamin causes tachycardia - why?

    This is a very late reply, but I think I have just found out why this is. I get this too, and also have POTS. When I was taking high doses of B12 I was also having to take a LOT of potassium to stop my heart racing. B12 is a vasodilator, so it opens up the veins and arteries, which, frankly, is...
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    Induced insatiable Hypokalemia and Methylfolate Insufficiency

    I'm so glad I read this thread. I have been dropping by occasionally, and learned why I had such a big reaction to folate and B12 before Christmas - classic hypokalemia, which led to chest pains, foot cramps and constipation. Rectified that with 4mg daily of potassium and stopped the folate...
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    B-12 - The Hidden Story

    burning mouth Hi Freddd thanks for this. My red tongue has also gone, but the burning mouth continues. Good to hear your experience. I shall continue.... Nicola
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    B-12 - The Hidden Story

    Been a while since I've been here, but I am trying the B vits again. Brief history - CFS due to mercury amalgams. Amalgams removed 5 years ago, slowly getting better. My two worst symptoms are POTS, now largely controlled with a beta blocker, and burning mouth syndrome, thought to feature...
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    B-12 - The Hidden Story

    CFS vs B12 deficiency - Rich Hi Rich could you clarify in which way B12 deficiency differs from CFS? I agree with you, and think it may be why so many CFSers experience detox, which is long and difficult rather than a short-lived start-up. thanks Nicola
  16. N

    B-12 - The Hidden Story

    Hi Freddd I have been meticulous in taking the brands you recommend, so every day I take the Solgar metafolin, the Jarrow mb12 and the Country Life (?) dibencozide, as well as the co-factors - magnesium, zinc, fish oil, carnitine fumarate, B Right, vit C, A, E, calcium, potassium, B6. Tried...
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    B-12 - The Hidden Story

    Hi Rich I was wondering whether you knew if B1 (thiamin) plays any role in methylation, or whether a deficiency of it - possibly caused by a methylation block - could lead to dysautonomia? Just been doing some reading around, and wondered if it fits in with your hypothesis. I'm...
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    B-12 - The Hidden Story

    Hi Sunday I think it was Freddd who suggested that if you were having problems with start-up to aim for length of B12 intake, rather than depth, ie, taking in small doses over a longer period, rather than a big dose all at once. As I wanted to go gently, I took my doses during the course of...
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    B-12 - The Hidden Story

    Hi Sara Currently I am taking 600mg folate and between 5-7.5mg methyl B12 a day, in divided doses. The half moons started coming back almost as soon as I had my amalgams out, and have slowly been reappearing in the 3.5 years since, but theye have definitely had a spurt since starting on the...
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    B-12 - The Hidden Story

    Hi Rich Wow! - and there I was expecting to be told to take more calcium or zinc!! I really appreciate the indepth reply, and I love finding out what is really going on. It's encouraging to find it IS something to do with getting methylation going. So I'm on the right track. When you...