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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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  1. R

    How fast does MeCbl breaks down to HyCbl with light? And which forms?

    Here is a recent article on the subject. I am finding more and more doctors' offices know little to nothing about this. http://www.ijpsonline.com/articles/photodegradation-of-methylcobalamin-and-its-determination-in-a-commercial-formulation.pdf
  2. R

    POTASSIUM SUPPLEMENTS made me ill

    I have to add a huge thumbs up for the coconut water. Seems to be about the safest way to get the potassium boost after a heavy cycle, and it does NOT irritate the stomach like some supplements can. I prefer to get nutrition through food (ha ha, will that ever be the case with metafolin?), and...
  3. R

    Not sure where to start! Heterozygous C677T/CFIDS Diagnosis

    I also have a single C677T and I have found that I MUST TAKE MY POTASSIUM. Target brand should be fine. If you crash out, take a little potassium to see if that could be it. I think if you have OTHER low potassium symptoms, then 500 mg as a starting dose should tell you. Coconut water may be...
  4. R

    Let's talk Mucous

    Consumption of folic acid makes my mucous thicker. Not taking l-methylfolate enough throughout the day also thickens my mucous.
  5. R

    Advice on EDTA

    I have only used it as part of a compounded nasal spray (the EDTA was the surfactant component?) to get rid of some persistent colonized bacteria. As a nasal prep, it really burned my tissue, but I was cleared of the nasty microbe colonies.
  6. R

    Weird symptom but not unwelcomed

    I do have sinus issues, and had gotten improved mucous thinning for a bit. That could be what is going on.
  7. R

    POTASSIUM SUPPLEMENTS made me ill

    wasn't sure if the Emergen-C was taken or missed.......... Thanks for the heads up on potassium citrate.......definitely stick with what works. I have had a few funky episodes like that.........sometimes just a really bad frame of mind will come over me.......usually in the...
  8. R

    Considering Medic Alert Bracelet... what would I put on it though?

    I used to be on cortisol, but haven't been on it in about two months.......... I remember reading somewhere that hydrocortisone treatment can lower potassium.........wish I'd known that while on it!!! Anyway - something to keep in mind with cortisol/potassium dosing - they may be related.
  9. R

    POTASSIUM SUPPLEMENTS made me ill

    -------------------------------------- Some of the symptoms you describe can also be caused by folic acid. If you happened to have the 4 packets of Emergen-C, that would have contained 50 mcg of folic acid --- certainly enough to set off those symptoms in me---And it took me about two weeks...
  10. R

    Folate Issues & Methylation

    ______________________________________ Raw veg and/or low potassium seem to be what might be causing flares. I upped the metafolin and potassium on critical days (cycle days 28, 29, 1, 2, 3, 4), as I had hoped to avoid taking Lysteda (heavy duty pharmaceutical). I was a little tired but...
  11. R

    Folate Issues & Methylation

    Madie, I will answer, but it may take me a few days! Rosebud
  12. R

    Poll: What brand/form/dose/timing of potassium do you take? What switch to?

    Potassium amino acide chelate has been doing me well, and I can take at least 2000 mg on days when I anticipate I may need to be making more red blood cells.
  13. R

    Insomnia from Methylation Protocol???

    I have had some 4:30 or 5:00 am waking, though not really remembering dreams.
  14. R

    Vit B12 helping with frequent urinations?

    Not sure what you are taking, but you might need to start taking potassium right about.................NOW!! No, seriously, if you are not taking potassium, you could have a crash in the area of day 3 after mb12, depending upon what other methylation factors you may already be taking. You...
  15. R

    Scott Forsgren's report on the Shoemaker-Nathan-McDaniel Biotoxin Illness Conference

    I remember reading Scott's work on Shoemaker.......I really like all the updates to Shoemaker's work.
  16. R

    Yaski SNPs - questions

    thanks drex that is helpful
  17. R

    Cortisol & Inflammation??

    I was on hydrocortisone, up to 30 mg in a day, but don't need it now. I have to make sure I get my potassium, though. I still get sick a lot........working on this one. I am on the Active B12 Protocol - at full bore, I might add, going on 6-8 weeks......getting a lot of healing of neuropathy...
  18. R

    Folate Issues & Methylation

    okay!! 500 mg of Potassium chelate 5-6 times a day seems to be pretty close to a sweet spot for me, as long as I avoid FOLIC ACID. Potassium in this form does not upset my stomach, and I made it through cycle days 1-4 with NO potassium crash (a NEW and minor small miracle)....just a few muscle...
  19. R

    Actos and Alternatives

    I have used actos, but had trouble avoiding carbs at that time. It can help lower MMP-9, I think, and that can possibly be done more gently with fish oil or even aspirin. I had managed to lower my MMP-9 by hitting fishing really hard at one time, even though my MSH stayed low.
  20. R

    Anyone done the specific carb diet or GAPS?

    I have done SCD as a test, and my gut issues were greatly resolved on it. I later examined WHY I might have done so well on it, and come to find out, I don't tolerate folic acid - as a vitamin supplement or in fortified foods. So, you could test folic acid WHILE ON a test week of SCD, and see...
  21. R

    Mercury - how much longer?

    When I switched from folic to methylfolate I saw improvements over a 2-4 week period.
  22. R

    Folate Issues & Methylation

    I did have to switch from CSM because of the sweeteners........I don't do well on artificial sweeteners these days. I stick to Welchol, as that merely gives me gut trouble. I seem to be thinking that if I take Mb12 and Methylfolate plus potassium, etc, then I am probably in a full methylation...
  23. R

    Cheapest way to test and treat methylation for a family - Rich

    Dear Robin, Oh, how our stories are so similar!!! I would say for your daughter, that minerals would be least expensive, esp. if you are already taking them. I'd bet she has low MSH, though Shoemaker doesn't track that like he used to. I don't fully understand all the biochemical stuff...
  24. R

    Poll: What brand/form/dose/timing of potassium do you take? What switch to?

    I have thought about upping my number of NOW multi-min tablets, but would much rather take my Vit D in fermented cold liver oil form... maybe the gluconate form of potassium is irritating to me. I just need to keep my doses up, so i will increase with magnesium
  25. R

    Poll: What brand/form/dose/timing of potassium do you take? What switch to?

    Thank you everyone!! Keep it coming!! I did just rediscover coconut water today while getting my running shoes. The guy at the running store mentioned it. I did a test on it today to see if anything tears up my stomach. It got a little rumbly then settled down. I then accidentally got...
  26. R

    Methylation study and C4A

    http://www.survivingmold.com/treatment/step-by-step Here is the treatment plan, sort of. I have followed these steps, but not while methylation was being supported. Probably not wise to do Cholestyramine or welchol until metals are cleared and methylation is going smoothly..........oh, the...
  27. R

    Question for Fredd and others: Ramping up B dosage question: Ratio of Folate to B12?

    Thanks Maddie! I wasn't sure if you might catch it on the thread. Citrate sounds like it could be a better form for me maybe. Me and my gut!!
  28. R

    Poll: What brand/form/dose/timing of potassium do you take? What switch to?

    Poll: What brand/form/dose/timing of potassium do you take? What switch to? Right now, I take potassium gluconate - store brand that provides 99 mg of potassium per capsule, and take 2-3 caps 4-6 times a day. I am not sure about IBS and various forms of potassium or if I might need to...
  29. R

    Question for Fredd and others: Ramping up B dosage question: Ratio of Folate to B12?

    @ Maddietodd - I hope you see this - what kind of potassium do you take? Maybe you have told me this before - What form and brand of potassium do you take? I am not sure I want to stick with potassium gluconate, and want to have the next one ready. I am considering taking an amino acid...
  30. R

    Question for Fredd and others: Ramping up B dosage question: Ratio of Folate to B12?

    12-24 hours for initial washout. about 2 weeks to recover from those symptoms (for now at beginning of protocol -at 6-8 week mark)