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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. K

    High Dosage methylfolate users

    Wow @howirecovered, this is interesting because on my last Nutreval, when supplementing about 5 mg of methylfolate my b1 went to flatline, in spite of adding an extra 50 mg daily over and above what was already in my multi TD. Guess it ended up in the potty! I have always been a good veggie...
  2. K

    Pyroluria?

    Hi @Violeta, I am successfully using Vital Whey Natural, and have since about May of this year. I started slowly with small doses and it took a few jump starts before my body seemed to like it, but as I recall it only took about 2 weeks to get it going well, at which point the whey became...
  3. K

    Pyroluria?

    Thanks for these links @ahmo. Yes, I am aware, and although I have not shown any autoimmune issues whatsoever, I do show sensitivity to gluten among other foods. Of course, these foods were eliminated long ago and for well over a year. In spite of this, however, I could not make any real...
  4. K

    Pyroluria?

    Wow! Thanks for this @Sherpa! So glad the P5P is helping you! I got a similar calming effect when I first started the larger dose. I did test low (Nutreval) even when well supplemented for both b6 and zinc. I will let my doctor know about this in case she wants to look more closely, just for...
  5. K

    Pyroluria?

    @Sherpa, will you let us all know what test you end up doing for pyroluria? Would be so helpful. I am doing MUCH better than I was since reducing my methylfolate dosage (now down to only 400 mcg) and increasing my zinc and b6. Now on 100-120 mg zinc, mostly as glycinate and eating a good...
  6. K

    High Dosage methylfolate users

    Hi everyone! I just posted on the pyroluria thread a whole long story about what has been happening to me. Suffice to say we are all so very different! I don't know my snps either other than compound hetero mthfr. And as @whodathunkit mentioned, I don't really want to know as it seems many...
  7. K

    Pyroluria?

    Hello all! I bet you think I had forgotten about you! Naaa... Just still trying to worm out more answers, which has in some ways left me with more questions. I do have a few interesting things to report tho. I did my Nutreval at beginning of September and results came back around the end of the...
  8. K

    High Dosage methylfolate users

    @whodathunkit, my doc suggested MSM for me too, and I take 2 grams a day. Also, interestingly, I have never seemed to need more than about 5 mg of methylfolate but have been taking the MSM since I got on full methylation support last April. Not sure if I had specific symptoms from MSM, as I...
  9. K

    High Dosage methylfolate users

    @acrosstheveil, I mentioned in another reply that my adrenals have responded to more animal protein in my diet. I was not able to do salt, as it was extremely irritating to my gastritis and probable ulcer. I never craved salt but do like the taste of it in the meat juices, however even those...
  10. K

    High Dosage methylfolate users

    @zzz0r, yup, I ditto this. My cortisol is now back up into normal range but when naturally lower at night my body is cranking out adrenaline to counter the inflammation in my sore gut. It comes with mild insomnia (usually can get back to sleep after about an hour) but when I do sleep I wake...
  11. K

    Pyroluria?

    Hello all! So... Here we are about 6 weeks later from my initial testing after my increase in zinc. Note that I had to reduce my dose to 62 total milligrams from the previously stated 69, as I was getting some leg cramps at the higher dose and did not feel my gut could tolerate an increase in...
  12. K

    High Dosage methylfolate users

    Hi @mgd1972, I currently take 62 mg total zinc. 32 mg is zinc carnosine (pepzin GI). I refer to this as "sticky zinc" as the mechanism of action is apparently that the bonding of zinc to carnosine causes it to adhere to the stomach lining and create healing for things like gastritis and...
  13. K

    High Dosage methylfolate users

    @mgd1972 Just thought I would let you know that my pimples, peeling skin and mouth sores have responded to zinc carnosine and P5P. I eat quite a bit of food folate. A green shake in AM with dandelion, romaine, cucumber, carrot, beet, apple (for extra pectin to feed gut bugs and soothe...
  14. K

    Pyroluria?

    Hello all! Just thought I would chime in here... I do not know if pyroluria exists, or if I personally have mauve factor but I can tell you this much as fact: I began my gradual journey into severe illness at the onset of menopause in 2007, although I have had a lifelong struggle with...
  15. K

    High Dosage methylfolate users

    Thanks @ahmo. No doubt the adrenals get hammered in all of this, especially for those of us who have been suffering for a long time. That was actually the first thing which was discovered about me in my journey ... That cortisol was in the pits. Nothing I did and nothing prescribed (glandulars...
  16. K

    High Dosage methylfolate users

    Wow @ahmo this was great! I do seem to be a fit for quite a few of the symptoms too, although I have not been able to watch the 2 hr video just yet. I had researched some of klinghardt's Lyme protocol when a Lyme lit doc had diagnosed me as positive, however I now believe that was a mistake, as...
  17. K

    High Dosage methylfolate users

    @caledonia I just went through your info on Nutraval interpretation and all I can say is FANTASTIC! Thank you! That led me to the info on KPU and now I am more curious about this than ever. I am doing quite a bit of the protocol in a milder form tho, and listening to my body as best I can...
  18. K

    High Dosage methylfolate users

    @ whodathunkit I think you nailed this one. I think my stomach acid was low, probably for most of my life due to low zinc (which makes me wonder about pyroluria questions from another thread - one nutritionist said she thought I had this issue. Dunno but my zinc always tests low in recent...
  19. K

    High Dosage methylfolate users

    @caledonia I appreciate your reply. I have not done anything like 23 and me but a functional med psychiatrist I saw did a few other genetic tests and said I am prone to metabolic syndrome. I don't have them handy but they aren't the ones you listed. She also reassured me that I just needed some...
  20. K

    High Dosage methylfolate users

    @ahmo thanks for these links. Yes, sals was one of the first places I looked before finding my snps. Seemed like they were causing trouble but it was hard to tell as virtually everything I put in my mouth wreaked havoc. Anxiety, pain, dizziness, weakness diarrhea, etc. I have been unable to...
  21. K

    High Dosage methylfolate users

    Thanks also caledonia! Most definitely have done the 4R and then some. And actually the disbiosis markers are not bad but amazingly got worse between my two tests 6 mos apart, which was before I started methylation supt. DHPPA and Hippuric acid both went up. Otherwise ok. I knew the gut was...
  22. K

    High Dosage methylfolate users

    Thank you ahmo! I had been doing the foobaths through the winter months since my gut was so bad thanks to another post of yours I had read but was not including vitamin c. Was glad to finally be able to stop doing these as they were messy etc, but it did at least keep my magnesium in borderline...
  23. K

    High Dosage methylfolate users

    Hello Everyone! I am new to the forum but have been lurking for over a year now and would like to thank each and every one of you for sharing your experiences, being courageous to step outside the box and help us all to stay strong and get better. You have all been a wealth of knowledge and...