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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. Kitsune

    MTHFR homozygous but can't take B supplement - help needed

    Wow, I didn't know there were so many new posts here; I was amazed when I came back. Lots to absorb. But I wanted to say you do know a lot, and in fact I think you may well have saved me from some real panic and more mistakes. I was convinced I needed at least a little folate, but the 200mcg...
  2. Kitsune

    MTHFR homozygous but can't take B supplement - help needed

    Yes, that's my alele and my son's. It's really heartening to hear that this regimen works for your girls - I'm going to try to start it tomorrow! Bearing in mind that we're all different, just so I can get a rough idea of where to aim, what kind of ratio of B12 to folate to you use, and what...
  3. Kitsune

    MTHFR homozygous but can't take B supplement - help needed

    Wow, that's so incredibly helpful, thank you! I've printed it out to refer to. It's also helpful to know that there will probably be detox symptoms, though I was prepared for those. I hope I don't have to juggle things with all those metals, but one step at a time. Years back, when my body was...
  4. Kitsune

    MTHFR homozygous but can't take B supplement - help needed

    Thank you. I've tried adeno but not this kind. Do you take folate as well?
  5. Kitsune

    MTHFR homozygous but can't take B supplement - help needed

    Hi - I've recently discovered that I am homozygous for the MTHFR polymorphism. I have started seeing a functional medicine practitioner over the internet who is advising me to start a methylated supplement by Klaire Labs with 1,000mcg methylcobalamin, 800mcg methylfolate, 30mg riboflavin, 15mg...
  6. Kitsune

    Glutathione supplements and numbness - advice needed

    Goodness me, yes. Or maybe one decade or century, GPs will be looking at vitamins, minerals, toxins, etc, and have good tests to show what's happening in the body, rather than doing the generally useless stuff they do now for anyone who doesn't have a broken leg or a bacterial infection. (I...
  7. Kitsune

    Glutathione supplements and numbness - advice needed

    Again, thanks for the link - will check it out, and I'm glad you've found something that helps! I find it hard talking about this sort of thing on public forums. The numbness really is that - like getting chemically coshed down below. It can happen to different degrees. I seem to be prone to it...
  8. Kitsune

    Glutathione supplements and numbness - advice needed

    Hi Basilico, thanks for the link. I've seen NO/ONOO mentioned elsewhere - sticks in your mind as a catchy title, which I'm sure it's meant to do, though I can't say I understand it very well, so I will have a good read. I have tried quite a few of the things on the list, and some work for me...
  9. Kitsune

    Glutathione supplements and numbness - advice needed

    SALT. OMG this flipping illness, so frustrating . . . but yes, I think maybe I've had an aldosterone crash. I had a hair mineral analysis done that showed my sodium levels were sky-high. I've taken a teaspoon of Himalayan sea salt mixed in a glass of water every morning for a long time, because...
  10. Kitsune

    Glutathione supplements and numbness - advice needed

    This is the last time I will bump this thread before I've (hopefully) got something to say about feeling better. I just wanted to add that I think it would be a mistake to view the numbness in isolation, because I'm having other symptoms too: digestive upset (despite the digestive enzymes -...
  11. Kitsune

    Glutathione supplements and numbness - advice needed

    Now that the milk thistle and ALA are out of my system, I'm really feeling 'flat' and still have the numbness, which just is not shifting. Actually I'm not 100% numb; I guess you could best describe it as a feeling that certain parts have partially seized up (it's hard to explain), coupled with...
  12. Kitsune

    Iodine supplementation

    After reading these 2 articles from sources I trust, I think I will stick with 200mcg a day. It's early yet, but I think it may be helping me, and low iodine symptoms read like a checklist of my own. The Great Iodine Debate (Weston A. Price Foundation) Iodine: How Much Is Too Much? (Paleo Leap)
  13. Kitsune

    Glutathione supplements and numbness - advice needed

    Thank you. That's quite an extensive list. Not sure what to make of it, though, as there are lots of healthy things on it. Exercise within my tolerance makes me feel better, and I seem to do fine with olive oil, quercetin, and pomegranate seeds.
  14. Kitsune

    Glutathione supplements and numbness - advice needed

    I'd be interested to look into the mechanism behind that. I'm supposed to stay away from fermented things like vinegar with histamine intolerance, but in small amounts they usually aren't problematic. Just thought I'd post an update here. The ALA definitely had to go because the heart problems...
  15. Kitsune

    Iodine supplementation

    So if you are low in iodine and this is perhaps contributing to CFS symptoms, what kind of dose should you aim for? I'm finding this very confusing. I have some Solgar kelp tablets that are 200mcg each, which apparently is the legal limit in the US (though I live in the UK, Solgar is a brand I...
  16. Kitsune

    Glutathione supplements and numbness - advice needed

    I'm also taking black radish for liver support, which is supposed to help you produce more bile. I'm not aware of experiencing any side effects from that. It looks like I'm going to have to discontinue the small ALA dose I've been taking too, as I believe that's the cause of the palpitations...
  17. Kitsune

    Glutathione supplements and numbness - advice needed

    I think it's the extra glutathione. But the numbness, in particular, makes me feel like I've lost some of my humanity. That's how it always felt on the SSRIs too (as well as my feelings being zombie-fied along with it). I'm going to have to stop the milk thistle and put my new running things...
  18. Kitsune

    Glutathione supplements and numbness - advice needed

    Hm, interesting. There's so little info out there about this. I don't suppose you know if people found a good (healthy) alternative?
  19. Kitsune

    Glutathione supplements and numbness - advice needed

    I've come across this in research, but from what I can see there's not a lot of science behind it - maybe one study, possibly in vitro? But if you do have more info, and you have time, please share. I don't know what else to try if this is what milk thistle is doing to me, or if it's an effect...
  20. Kitsune

    Glutathione supplements and numbness - advice needed

    Hi Learner1 - the C I am using now is Source Naturals Non-GMO C-1000. I'm in the UK, and that was a little tricky to find too. Almost all C out there, I understand, is synthesized from corn and made in China. Strange, isn't it? Cheap, I guess. You're right about the detoxing. I seem to have...
  21. Kitsune

    Glutathione supplements and numbness - advice needed

    Is your numbness gradually going away? Best wishes for your recovery; it sounds like you've found some things that work well for you. I think I've supplemented just about everything you mention above at some point. We're all so different, and then what works for us at one time might not do the...
  22. Kitsune

    Glutathione supplements and numbness - advice needed

    Hi - looking for some help with the seemingly endless quest to balance my supplements. It often seems like as soon as I find something that helps, it throws something else out of whack! I'll try to keep this as short and simple as possible; I did put a more general post about my 2 new...
  23. Kitsune

    Alpha-lipoic acid and milk thistle: energising or overstimulating?

    Certainly glad to get a reply here, so thank you! I must confess I'm not clear on everything you've said though. Is it that when a person gives their body extra support, e.g. from the ALA, it downregulates what it was doing before? And how is it that you're regaining tolerance - what was your...
  24. Kitsune

    Alpha-lipoic acid and milk thistle: energising or overstimulating?

    I have added both of these supplements to my routine lately and am not sure whether they are genuinely helping, or zapping my adrenals in a way I'll be sorry for. Does anyone have experience with these supplements? I'd like to add that I had my amalgam fillings removed about 8 years ago and did...
  25. Kitsune

    Fish oil - any benefits?

    Glad to hear you've been having some success with your regime, Lazy Caveman. The body aches, I've been coming more and more to believe, are probably the result of systemic inflammation. The question is, what's the cause? I'm sure it's different for different people. In my case, I've been...
  26. Kitsune

    Streptococcus overgrowth

    Just wondering where those without a physician's help get their antibiotics from? I'm in the UK and have some Mutaflor on order, along with a yogurt maker and some almond milk; I'm going to try culturing it, along with a no-carb diet (3 days or more - I came across a figure of 80 hours...
  27. Kitsune

    Potassium still required with gentle methylation protocol?

    It's a bit embarrassing to have played this out in such a public way, but I guess many of us have been here before, publicly or privately. To get back to the title of this thread, I don't think I have a 'need' for extra potassium at all - at least not on a regular basis. Even with doses of...
  28. Kitsune

    Potassium still required with gentle methylation protocol?

    Just for the record, I seem to be 'ticking over' OK on a regime where I take 200mg potassium gluconate 6 times a day. I already take my vitamin C at these times, so it's not a problem to remember to take the two things together. It would be nice not to have to take so much potassium, though...
  29. Kitsune

    Potassium still required with gentle methylation protocol?

    I seem to be able to have quite a lot of sea salt too; I always have a teaspoon in water first thing in the morning, though I'm OK to skip it if I'm away. I tried adding a little salt to the dissolved potassium gluconate I've been taking, but it didn't seem to make any difference. Thanks for...
  30. Kitsune

    Potassium still required with gentle methylation protocol?

    The message I see most often about this is that if you're taking any methylation supplements, it's a good idea to either eat extra potassium or supplement it. The advice I've come across for CFS in general, however, is not as clear. I've read that potassium can be low in CFS, but that if you...