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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

    Functional B12 deficiency?

    Thought I would post one more time in case someone else can benefit from what I have learned. Yesterday I had a consultation with a naturopath who specializes in genetics. She feels certain that my homozygous COMT mutations caused the issue, so Gondwanaland, you gave me good advice to stop the...
  2. L

    Functional B12 deficiency?

    Thank you for clarifying my terminology. I didn't understand that. I am heterozygous for MTHFR C677T MTHFR 03P39P MTHFR A129BC These are the only SNPs that are on the Genetic Genie report, so the only ones I know about. On another note, does anyone think burning like a sunburn that occurs...
  3. L

    Functional B12 deficiency?

    Okay. Actually I think I'm a little better. Hard to tell because the burning ebbs and flows, but it is thankfully ebbing some right now. I feel calmer and have quit shaking. The angular cheiltis that started when I missed a folate dose yesterday is getting worse, but I'm thinking I'll take a...
  4. L

    Functional B12 deficiency?

    Oops. Already had a couple of egg yolks in a smoothie. Just took a small amount of magnesium powder. I have been urinating frequently, but I have been drinking a lot. The urination seems to be in reasonable proportion to fluid intake. So would the niacin help reduce neurotransmitters or...
  5. L

    Functional B12 deficiency?

    Just took a third dose and not really noticing anything new. Still burning, anxiety is high and I'm shaky. Definitely too much adrenaline. Wondering if the burning could be from serotonin? I was reading something you said awhile back about serontonin syndrome. Not sure it applies, but was...
  6. L

    Functional B12 deficiency?

    No, I had some life stressors and some anxiety from them before the skin burning started, but the high anxiety started and has increased in the last week because I have been unable to resolve the skin burning.
  7. L

    Functional B12 deficiency?

    Pretty sure the burning in my skin is causing the anxiety, unless my anxiety caused a psychosomatic skin burning response. I'm looking for a noticeable difference in the burning, which I'm sure will greatly help my anxiety.....
  8. L

    Functional B12 deficiency?

    Okay, going to try 50mg more. I have had niacin flushing from taking it before starting the folate/b12. I think the feeling would be indistinguishable from the current feeling in my skin, but a rash would be tell-tale. No rash so far.
  9. L

    Functional B12 deficiency?

    That's interesting. Haven't had any effect from the niacin yet. Thought I would wait an hour then take 50mg more and see and then keep going. Unless someone can advise a better plan. Considering whether the whole skin burning thing could be an anxiety response. But doesn't seem like it...
  10. L

    Functional B12 deficiency?

    Thank you, I just emptied out half a 100mg capsule of niacin and took it. We'll see. I think a niacin flush might be my undoing right now just because of my current skin sensations. Does benadryl help with a flush? Wonder how long to wait before taking more if the 50mg does nothing.
  11. L

    Functional B12 deficiency?

    Good point. But would it go away with more folate if it was viral or bacterial? Always goes away with more folate and I've never had it before I started this protocol. It's miserable.
  12. L

    Functional B12 deficiency?

    Yes, the anxiety has been high. Xanax is helping. But I don't like taking meds. Yes, the wonderful COMTs - "smart and crazy SNPs." I think the homozygous COMTs finally explained why SSRIs created huge panic attacks for me. Thank you for the time you have taken to listen. I know these things...
  13. L

    Functional B12 deficiency?

    Just tested my pee. The strip was as dark as it can get 8.0. That's good right? or does that test have to be done in the morning?
  14. L

    Functional B12 deficiency?

    What form of magnesium do you suggest? I have some acid pee strips. Don't really know what to do with results. I'll go try to find them and test. I have read this about the D vit. before. Keep reading conflicting info. I'll stop the D supplement. Advise on the niacin. Afraid to stop the...
  15. L

    Functional B12 deficiency?

    I'm studying my lab reports again. I missed that the homocysteine was on there. It is 5.7. So I guess it should be higher. I checked my sulfur in my urine a few days ago and it was under 200, so that was good. Also I have been reading that b12 deficiency would cause low red blood cell count...
  16. L

    Functional B12 deficiency?

    Genetic Genie Report heterozygous 3 MTHFR genes VDR Bsm, VDR taq, MAO-A R297R BHMT-08 homozygous COMT V158M and COMT H62H MTRR A66G CBS C699T
  17. L

    Functional B12 deficiency?

    Good to rule out something. Symptoms of skin burning are kicking up right now. Making clothing touching my skin uncomfortable. Have taken a squirt of b12 oil, 5mg of enymatic therapy b12, 400mg of potassium in 2 doses, some beet and carrot juice, a banana and a little Xanax. Had potassium...
  18. L

    Functional B12 deficiency?

    No problem with toothpaste that I'm aware of.
  19. L

    Functional B12 deficiency?

    I got a brief reprieve from the skin burning before bed last night which was very nice. Then back with a vengeance in the middle of the night waking me up. Can skin burning be a potassium issue? or just B12?
  20. L

    Functional B12 deficiency?

    Oh my, yes. I meant 9600mcg. 9.6mg sorry. I'll edit the post and correct.
  21. L

    Functional B12 deficiency?

    I have read about the food folate issues, but still don't understand how the folate from a bottle is be better than the folate from food. Thanks for explaining it a little more. I did not realize that it was folinic acid. I guess that has to be converted and some of us can't convert. I'll...
  22. L

    Functional B12 deficiency?

    My only theories are: 1) My understanding from reading Rich V. is that if b12 blood levels are high your gut is absorbing it, but your cells are not, so maybe not a gut issue, but rather a missing a co-factor. 2) Maybe I went up too much on folate without going up enough on Mb12 and used up all...
  23. L

    Functional B12 deficiency?

    My adrenals are an issue. I see an Nurse Practitioner for adrenals and thyroid (it has been subclinically low) probably due to adrenal stress. Felt like that was getting so much better with the folate/b12 until I hit this mess. I do use Real Salt liberally on everything. Took a baking soda...
  24. L

    Functional B12 deficiency?

    Sorry, I forgot the potassium. I take it multiple times per day every time when I start feeling tightness in my calf muscle. I haven't been really good at keeping track, but it's 3 to 4 doses of 1 tsp. (270mg) potassium gluconate. I didn't have any negative reactions to the l-carnitine...
  25. L

    Functional B12 deficiency?

    Yasko's All in One 4 capsules This was my first methylation supplement and I got promising results from just that. It has a boat load of co-factors in small amounts. Magnesium Calm 2 tsp. daily raw liver - small chunk in smoothie daily egg yolk daily Selenium - 1 brazil nut plus 100mcg in All...
  26. L

    Functional B12 deficiency?

    I would appreciate some help from Freddd or someone with knowledge of his protocol. I've been doing Freddd's protocol for a number of months and thought I was being successful. I've felt so much better. Anxiety way down, fatigue way down, energy up. I don't have diagnosed chronic fatigue...