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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. L

    Freddd protocol - when to start Carnitine?

    Don't accelerate too quickly....easier said than done, I know. Are you taking potassium?
  2. L

    High Dosage methylfolate users

    Awesome! Wouldn't life be so much easier if we came with check engine lights and trouble codes;) That makes me wonder if some people who 'hate' veggies don't intuitively know that maybe they aren't the best thing for them to eat...added incentive to get DF to spit in a tube, I guess, so I can...
  3. L

    Deletions and conflicting results re:23 and 'Stirling'-help?

    First question: My son and I have several deletions-GSTT, among others. Is a deletion worse than a homo SNP, or is it a case by case deal? Too much conflicting info and my brain can't process it effectively at the moment! 2nd:23andme shows me as homozygous GG for L432V, related to estrogen...
  4. L

    High Dosage methylfolate users

    @helen1 - I would sure try adding potassium. I know I need more potassium when: I get constipated (sorry, TMI); wake up feeling hungover (7 mos pregnant, so it's been a while since I've had even a sip of wine at communion!); stiff/tight spine, palpitations-I could count my pulse without needing...
  5. L

    SAMe-when to add it?

    And THATS why I only eat raw beef that I raised. <shudder>
  6. L

    SAMe-when to add it?

    I haven't tried liposomal vitamin c, I don't react well to lecithin-it seems to trigger depression for some reason, so I've been wary of trying it. I do take 9 grams of reg vit c, throughout the day and with the iron though. (I swear, I'm a walking drugstore. :whistle: It's a regular juggling...
  7. L

    High Dosage methylfolate users

    It's my understanding that mb12:adb12:folate should be 1:1:1. I take them all at the same time, on an empty stomach with LCF, first thing upon rising. I no longer miss coffee. Are you getting any folic acid that could be interfering? How about enough Potassium? I just found that low...
  8. L

    SAMe-when to add it?

    @whodothunkit I'm a research junky and a total nerd. I was just following my gut (it's served me quite well so far) but your concern prompted me to actually get off my backside and do the legwork. So thank you for not being afraid to question! :) Re the iron supp: It's just floradix-...
  9. L

    SAMe-when to add it?

    @whodathunkit -Thanks! It was totally unexpected but not unwelcome. I blame Freddd and his DL quartet entirely for straightening things out. :p SAMe is actually recommended during pregnancy for certain conditions during the last trimester, which is where I am; it's also a go-to for my midwife...
  10. L

    SAMe-when to add it?

    No worries. I've been on the methylation roller coaster for well over a year, lurking here in the background mainly because I a) didn't feel I had anything of value to add and b) was able to find answers to all my questions to-date via search. I do appreciate the info though-it will be useful...
  11. L

    SAMe-when to add it?

    Thanks @whodathunkit. I had thought I was pretty well stabilized, up until this morning. The depression is back with a vengeance. :meh: So I guess I'll be waiting to add anything more until I pin down what's causing the funk. I thought it was folate, but that doesn't appear to be the case...
  12. L

    SAMe-when to add it?

    Thank you Sushi-I kept trying to reply last night and the blasted ipad kept doing weird things. Thank you for the direction-found lots already!:)
  13. L

    High Dosage methylfolate users

    I have found that my restless legs come back with a vengeance if I needed more folate relative to B12. Before I increase though, I'm experimenting with 5x2 instead 10x1. B12- I take 10 mg Adb12 sublingual, and add mb12 10mgs, and more throughout the day if I need it. It's all very subjective...
  14. L

    SAMe-when to add it?

    Talk to me about adding SAMe-I have tried every search method I can think of to find info, but it's just too short an acronym, and it seems very few that actually take it, spell it out. I have 200. Mg capsules. When should it be added? What to watch out for? (If it's relevant, currently taking...
  15. L

    Refinement of B1 Dose Induced Paradoxical Folate Deficiency

    This is way late, but thank you for confirming this! My MCV was 93, in the midst of severe anemia and b12 deficiency. I wondered how the MCV could show virtually nothing, and wondered if perhaps the two confounded each other. The MD said that was impossible...I generally assume whatever is said...
  16. L

    High Dosage methylfolate users

    @place -apples have high salicylate as well...forgive me, I don't know you history, but could salicylate sensitivity be relevant to you? salicylatesensitivity.com has good info...it can affect sinuses and cause a bunch of different stuff, I pursued that avenue when I was trying to hunt up an...
  17. L

    High Dosage methylfolate users

    I have a fairly severe hiatal hernia and get heartburn to the point of vomiting even while sitting upright. Regular chiropractic adjustments keep it controlled, but when it's bad it is awful. Have you considered that perhaps you have low stomach acid and actually need more? Pre-preggo a bit of...
  18. L

    High Dosage methylfolate users

    I am also hetero a1298c, and I can tolerate small amounts of folic acid and cyanocobalamin. That may be because I am taking such a large dose of folate and other B12's, but I freely admit to not having a clue what the he!!! I was doing when I started, and by the grace of God, haven't had any...
  19. L

    High Dosage methylfolate users

    What brand is most cost effective for the quantity? I ordered metabolic maintenance the first go, as I had no idea what I was doing (pre-PR discovery) and I need to reorder soon; what has been you experience? Ideally, I suppose, 5 mgs would be it, for twice-a-day dosing. Any suggestions?
  20. L

    High Dosage methylfolate users

    Huh. Turns out I can't quote on an ipad SOOO... @place - the list of sups I'm taking/have taken would choke a horse; iodine, selenium, a, d, fclo, p5p, mhtf, microcrystalline hydroxyapatite (mineral supp), tmg, berberine, herbals, homeopathics, on and on. I've narrowed it down to what I listed...
  21. L

    High Dosage methylfolate users

    I've been lurking-and learning- for several months, but I'll chime in...I've been on 10mg folate, 2 g LCF, 10mg AdB12, and somewhere between 7-12 mg mb12, plus 1 homocystX, and potassium as needed, usually alkaseltzer good, as that kills pregnancy-related heartburn and adds K: two birds, right...