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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. Xara

    B12 Documentary

    For Dutch people: active B12 can be tested at Erasmus Medisch Centrum in Rotterdam and at Medisch Spectrum Twente, Enschede. It's called the Holo-TC test.
  2. Xara

    B12 Documentary

    BTW I saw at the site of PAS that an active B12 test will soon be available in the USA: http://www.pernicious-anaemia-society.org/news/active_b12_test_to_be_made_available_in_the_us
  3. Xara

    B12 Documentary

    You're welcome. I hope you enjoy it. Please tell me what you think of it after having watched it.
  4. Xara

    B12 Documentary

    Thanks, Dreambirdie. Kitties are cute. :) About part 3. The beginning is interesting, later on it's more about politics, IIRC. In the first part of part 3 there's also a woman who says, she has been ill for over thirty years (did I hear that correctly?) and has improved by getting injections...
  5. Xara

    B12 Documentary

    Part 3:
  6. Xara

    B12 Documentary

    Part 2:
  7. Xara

    B12 Documentary

    Something went wrong with the embedding, so I'll make different posts. Part 1:
  8. Xara

    B12 Documentary

    News from the PAS, The Pernicious Anaemia Society http://www.pernicious-anaemia-society.org/ The PAS has published a new documentary, Living With The Fog, in three parts. Personally I found part three most interesting, different people react differently to different treatments. Some people...
  9. Xara

    Folate Receptor Antibodies

    I see you have edited your post. Thanks for bringing in the nicer tone. Frankly I don’t quite understand what you want from me. I already made it clear that as for overdriving the methylation cycle I do not agree with you and dbkita, so yes, that makes me the minority when talking with you...
  10. Xara

    Folate Receptor Antibodies

    Thanks, dbkita. I agree, no need to get to the max, where ever that personal max may be. I know I have said in one of my posts that I wanted to reach the sky, but I really don’t take it as a pissing contest. I just don’t know at this moment where my optimum is. Optimum, not max. That is...
  11. Xara

    Folate Receptor Antibodies

    AFAIK in psychiatry dosages of 2 x 15 mg are prescribed, sometimes even higher, and I have been searching (among other things) what the side effects of such a dosage is. I personally do think 30 mg is rather high, but I think it all depends on where you stand. Some consider 800 mcg as a high...
  12. Xara

    Folate Receptor Antibodies

    Yes, mine too. Last two days I got a bp of 90/50-55 and a pulse of 95, while sitting down, and increasing muscle weakness. After increasing sodium things improved. Meaning a bp of 95/60 and a pulse of 60-70, muscles returned to former weakness.
  13. Xara

    Folate Receptor Antibodies

    We could discuss this for hours, but to tell you the truth: basically I am a sceptic, a doubtful Thomas, especially when the internet is concerned. Since there's no methylation expert in my country that I know of that I can talk to, I have to turn to online sources. In this digital world I...
  14. Xara

    Folate Receptor Antibodies

    I think there is an elephant in the room. If normal, healthy people don't get into trouble when taking 30 mg of methylfolate or mB12, or even higher, why think of overmethylation when taking crumbs? If one insists on thinking the effects discussed ad nauseum are due to (over)methylation, I...
  15. Xara

    Folate Receptor Antibodies

    I am sorry, there seems to be a misunderstanding. I was not at all extrapolating my experiences to the rest of the universe, on the contrary. I was trying to explain why I think people react so differently, to certain amounts of nutrients for instance. It makes perfect sense to me that there...
  16. Xara

    B12 high serum level

    Hi cph! I have no experience with S. naturals, so I can't say anything about switching. I take the Anabol Naturals as a sublingual: I spread the contents between my cheeck and gum. I think most use it that way. I started with a quarter every other day, I had trouble taking it every day at first...
  17. Xara

    Folate Receptor Antibodies

    Hi dbkita! What do you consider to be a high level? Thanks for mentioning these keywords. DNA methylation and silencing gene expression brought me to a wondrous world I didn’t know. I must say, after googling I’m feeling less worried. Although I did not succeed in doing years of study in one...
  18. Xara

    Folate Receptor Antibodies

    I did a quick search on the effects of methylfolate before going to 12 tablets yesterday (9600 mcg). I learned there are people taking 30 mg or even 40 mg a day. As to side effects, apart from allergic reactions, I learned it is considered reasonably safe (GI problems). Reason I think 2400-3200...
  19. Xara

    Folate Receptor Antibodies

    I've started this road, and I'll see where it leads to, maybe it's got a dead end. Also, I definitely do not exclude having several diseases or disorders at the same time. I just don't investigate other possibilities right now. (As far as those are concerned I am merely sitting back and...
  20. Xara

    B12 working but can't sleep.....

    In the beginning, when I was at low doses of methylfolate and mB12, and tried to build up my aB12 AN for a quarter every other day to every day, I stopped taking all three because of a strange, strong pressure in my sinuses. Very unpleasant. I remember adreno had a similar reaction, he made the...
  21. Xara

    Folate Receptor Antibodies

    O gosh, thanks for asking my opinion, but I'm afraid my answer might be a disappointment to you. I'm just combining info, guessing and hoping... :) For the time being I relate all my symptoms during more than twenty years of illness to B12 deficiency. Nerve problems in body (tingling) and...
  22. Xara

    Folate Receptor Antibodies

    I have one day of a higher intake behind me, so who am I to take part in this debate... - I like being bold. :) Yesterday's intake: 4 x 3 of 800 mcg solgar mfolate, 3 x 3 mcg mB12 ENZ, 2 x 4 mg mB12 AOR, a 5 mg B12 injection IM, 2 x 10 mg aB12 AN. I was quite disappointed with the outcome...
  23. Xara

    How to Titrate to Get Out of Donut Hole Insufficiency

    You're kiddin'! All this effort to get a pulse like mine? All I have to do is sit on the couch all day. :) I'll look into ALCAR, Freddd, don't know much about it, thanks for mentioning it, much appreciated.
  24. Xara

    How to Titrate to Get Out of Donut Hole Insufficiency

    Hi EastWest, 60 mg of aB12 - that's quite a bit. :) I'll start trying 2 x 10 mg of AN Dibencoplex tomorrow, since a friend of mine, she told me that after taking that amount of aB12 the aching in her muscles disappeared. So I'd like to know: how come you're taking 60 mg? Any improvements...
  25. Xara

    How to Titrate to Get Out of Donut Hole Insufficiency

    Interesting! Since so many supplements affect blood sugar and blood pressure and since I am not high in both of these I am regularly checking them at home. Last Friday for instance I started taking Jarrow Formulas' R-ala five times a day but I had to go back to three times a day, because sugar...
  26. Xara

    How to Titrate to Get Out of Donut Hole Insufficiency

    Thanks pela, Freddd and adreno, for the information given, for sharing your personal experiences, I am much more confident now about figuring out what my best methylfolate dose might be by trippling each dose. Thanks for those figures as well, pela, it's nice to know, it's nice to have some...
  27. Xara

    How to Titrate to Get Out of Donut Hole Insufficiency

    Hi Freddd! Thank you very much for your information, very helpful indeed. I'm happy to say that I have been noticing more and more symptoms that fall in group 3 lately. Skin peeling around some fingernails, and (never had this one before) feeling of having a tiny painful splinter in some of...
  28. Xara

    huge crash from no b-12

    Whenever comparing I compare myself to someone with diabetes.
  29. Xara

    How to Titrate to Get Out of Donut Hole Insufficiency

    That someone else might probably be me. :) Enough B12 is very important indeed. In case anyone is interested, after having read about my mfolate intake nowadays: I am taking 2 x 8 mg mb12 a day at the moment and 2 x 5 mg ab12. I am planning on upping those two as well. And I'd like to second...
  30. Xara

    How to Titrate to Get Out of Donut Hole Insufficiency

    Last week I upped my mfolate from 800 to 1200 mcg. Since all's going well I had been thinking about how much I should titrate on Friday - then I want to up mfolate again. Freddd, thanks for posting this, and posting this right now :) , now I have some idea how to handle this. Thanks pela too...