• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. M

    3 yrs on - methylfolate and muscle wasting roadblock

    Have you thought of copper? Freddd had to take a lot (titrated up to 20 mg or something daily - most people probably need much less) to avoid gums wasting away and some other nasty-sounding symptoms.
  2. M

    Conclusion - I NEED Glutathione (mthfr, problems with b vitamins, and absorbtion)

    I should add that I'm pretty sure I'm an under-methylator. BUT, I'm not sure I believe that over-methylation is a real "thing" - but that's very much a hunch-thing based on my own experience, where it turned out increasing methylation supplements (and potassium) was always the answer. Or that's...
  3. M

    Conclusion - I NEED Glutathione (mthfr, problems with b vitamins, and absorbtion)

    OK - and now I'm not sure if this posted but I've moved to the laptop and the draft is still there, so phew! Everything I write is definitely in "hunch" territory, and maybe no help at all. That's my disclaimer. :-) So wow, I can relate to the frustration. Not sure I can help much either other...
  4. M

    whose methylation protocol to follow.

    Late reply, but no. Apparently it stopped working for many people for some unknown reason. I still have some and use it occasionally. It does seem to give me the muscle twitches that mean I need potassium, which I interpret to mean it's increasing my methylation (or at least doing something...)...
  5. M

    Social Anxiety, Panic - Methylation, Overmethylation, Histamine, Copper, Pyroluria

    It's a tough one to deal with. I suspect my anxiety/stress response is mainly inborn, so while I can gradually improve on it over time - with the ups and downs we all experience - it's always going to be more work for me than for the average person. I would definitely keep trying to find a way...
  6. M

    Social Anxiety, Panic - Methylation, Overmethylation, Histamine, Copper, Pyroluria

    I could not agree more - both with the above and with everything else you wrote. I hope it didn't seem like I think CBT can "cure" CFS/ME, etc. And when I say that it has helped me a lot, I should make sure it's clear that I mean psychologically, both with learning to live with my physical...
  7. M

    Social Anxiety, Panic - Methylation, Overmethylation, Histamine, Copper, Pyroluria

    Hi @Vanessa - Interesting. My mom became a therapist for mainly low-income clients (it's a "Christian" practice but she doesn't push religion on people) late in life and I believe she uses limbic system retraining with some of her patients. I will have to ask. She also has had a lot of...
  8. M

    Social Anxiety, Panic - Methylation, Overmethylation, Histamine, Copper, Pyroluria

    Hi @Vanessa, I think you're spot-on about the zinc-copper balance. Sorry you have copper overload. On the other side, high zinc dosages bind with something in the intestines and reduce absorption of copper. Interestingly the opposite is not the case: high copper intake does not reduce...
  9. M

    Social Anxiety, Panic - Methylation, Overmethylation, Histamine, Copper, Pyroluria

    Hi again. Nope - even I wouldn't take THAT many tablets. ;) When I'm in the U.S., I stock up on capsules with 15 mg of methylfolate from "20.5 mg L-5-Methyltetrahydrofolate (5-MTHF), calcium salt", from a site that doesn't seem to advertise to consumers (seems more geared to doctors, but you...
  10. M

    Is this a reputable pharmacy? top-rx-pharmacy.com? UNITED PHARMACY LCC

    By the way, I'm also a fan of curcumin although I take so many things it's hard to know for sure what does what. Certainly never got any negative side effects from it though, which I can't say for everything. I also seem to benefit from pregnenolone (currently 200 mg per day divided into two...
  11. M

    Social Anxiety, Panic - Methylation, Overmethylation, Histamine, Copper, Pyroluria

    Yes, I had also read mostly bad things about too much copper but just decided to take the plunge and re-evaluate if I get toxicity symptoms. So far so good about 2 weeks in to the copper (and zinc but I seem to get a much better effect with both - having tried zinc by itself earlier with maybe...
  12. M

    Is this a reputable pharmacy? top-rx-pharmacy.com? UNITED PHARMACY LCC

    I was just about to suggest Smarties! ;-)
  13. M

    Social Anxiety, Panic - Methylation, Overmethylation, Histamine, Copper, Pyroluria

    Oh! And large doses of potassium (several GRAMS per day) also helps, but K doing anything for anxiety is also something that only started since I started the methylation protocol.
  14. M

    Social Anxiety, Panic - Methylation, Overmethylation, Histamine, Copper, Pyroluria

    Hi. These things are so complicated to figure out. Just something that very surprisingly has helped me with both anxiety and skin dryness issues (eyes/eyelids and fingertips): dramatically increasing my dose of copper from what's in my multivitamin (I was getting maybe 1 mg per day while taking...
  15. M

    Strange reaction to methylfolate

    Another update: Freddd's recent experience with copper inspired me to try more of it than is in my multi-. Thankfully, unlike him I haven't been taking high-dose zinc - which depletes copper - and I only started trying a little more zinc recently (45-50 mg per day including in my...
  16. M

    Strange reaction to methylfolate

    LOL, I wrote a long reply and status, then hit the back button and lost everything except the word "benfotiamine" which I had copied and pasted. I was getting to: I agree you can sometimes happen on something by trial and error. That "random variable reward" is probably exactly why "PWCs" end...
  17. M

    Cognitive behaviour therapy for chronic fatigue syndrome: Differences in treatment outcome between a

    Hi @Snowdrop , I doubt I've ever met a single person that doesn't make some those logical errors every day. Mentally, we're all on a continuum: no one is 100% "basket-case" in all areas and no one is 100% emotionally perfect. So to me CBT is simply a tool for better living - liking eating well...
  18. M

    Cognitive behaviour therapy for chronic fatigue syndrome: Differences in treatment outcome between a

    Thanks Valentijn! I wasn't sure, or I would have written that myself. I wish they would study what I consider to be "correct" use of these things..
  19. M

    Cognitive behaviour therapy for chronic fatigue syndrome: Differences in treatment outcome between a

    I really agree that testing interventions like CBT is nothing like testing a chemical in a lab. Anything based on mental states and social interactions is inherently difficult to draw conclusions from, because the statistics assumption of a "homogeneous population" is clearly not satisfied (and...
  20. M

    Strange reaction to methylfolate

    Hi skboren - thanks for your reply! Yes, I've been through just about everything you can imagine for the past 10 years or so, except thankfully I don't get migraines or seem to have any allergies, and I have inexplicably good oral health according to my dentist (maybe supplements help since my...
  21. M

    Strange reaction to methylfolate

    I think this is my first post ever, and I'm a year late (I wonder how so many of these things turned out!...), but I've read a lot of these posts and experimented with the "Freddd protocol" for at least two years, making all the usual beginner mistakes (thinking, incorrectly, that I might be an...