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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. KRR

    Pursuing treatment again

    After reading the caveats about Equilibrant, and given my recent flareup, I decided to put it on hold. I've been having severe nerve pain that seems to originate around the scapula-clavicle joint, with some swelling there, and pain referring to neck, shoulder and upper back. Makes it difficult...
  2. KRR

    Pursuing treatment again

    Yes, I've been on the vagus nerve trail for a while now.. VanElzakker's work hits the spot for me. haven't done anything for h pylori, don't seem to have those symptoms, once tried some mastic gum anyway but couldn't stomach it. I will consider the betaine HCL now that you mention you didn't...
  3. KRR

    Pursuing treatment again

    @otherworldly, I'm so glad to hear that you had such success healing your gut! I've done those supplements without much improvement (not the betaine HCl though, as I just don't eat enough at a time). My diet is awfully inflammatory to begin with, so maybe that's a limiting factor. I have to eat...
  4. KRR

    Pursuing treatment again

    @otherworldly, thanks so much but please take care, no hurry!
  5. KRR

    Pursuing treatment again

    Thanks, makes sense. It's just a little discouraging to have to lower the dose below ¼ tab and not really be getting much of a therapeutic dose for quite a while, at the same time not really knowing whether my symptoms are from the Equilibrant at all or just coincidence. But my intuition keeps...
  6. KRR

    Pursuing treatment again

    Hi folks, I'm surfacing again.. have had to narrow my focus a bit because it's just too much for me to pursue all the possible angles. Currently I have a hugely difficult decision to make about whether to take out my G-tube or replace it with a J-tube.. so many variables to consider, with my...
  7. KRR

    Pursuing treatment again

    Hi @Mary, thanks for the info on tagging.. I receive email notification when a post is replying to me directly, so I didn't understand the purpose of tagging except when you want someone else to be alerted also. Anyway, thanks also for the info on AF Betafood. I'm sure I never took enough of it...
  8. KRR

    Pursuing treatment again

    Thank Mary! I'm sure my stomach acid is low. I use some Standard Process supplements, mostly Catalyn as a multi, but AF Betafood sounds like a good idea. I do have silent gallstones, but no one seems concerned because I don't have classic symptoms of gall bladder problems. Reminds me to also go...
  9. KRR

    Pursuing treatment again

    Wow, thank you so much for the excellent info!! I will take some time to think through these things. I haven't had a gastric emptying study in many years - first time, I just ate a bit of something with dye in it and then had some kind of scan that showed that the food went through okay. That...
  10. KRR

    Pursuing treatment again

    Thanks for that. I don't think it's allergic or mast cell reaction, although I really don't know anything about mast cells.. but the tube feeding doesn't seem to bypass the problem, so anything I put into my stomach by tube feels just as bad as if I had taken it orally. The tube is still in, but...
  11. KRR

    Pursuing treatment again

    Thanks! Have never heard of that, but sounds worth looking into.
  12. KRR

    How does one see a doctor when bed-bound?

    Hi Jennifer, My experience with 211 is that they only deal with psychiatric emergencies. Have you had a different experience? I so agree with what you said about having someone to advocate for you. I needed that so many times. I remember being in a waiting room having to fill out forms, when...
  13. KRR

    How does one see a doctor when bed-bound?

    If you can push yourself, then there are lots of ways to deal with anxiety.. having someone take you who you feel is emotionally supportive, doing various practices to calm yourself like slow breathing, relaxation techniques, etc.. the worst that can happen usually is that you'll feel awful from...
  14. KRR

    How does one see a doctor when bed-bound?

    I'm in a similar situation. Are you in the US? Here, there's no way around pushing through to get out once in a while to see a doc. They won't keep you as a patient if you don't show your face once in a while. If you have a true emergency, you call an ambulance, but I've learned that what can be...
  15. KRR

    Pursuing treatment again

    Well, I'm back on this track again, after a long bout of eating difficulty which is still ongoing, severe weight loss (77 pounds at 5 feet), G-tube placement, and now not being able to tolerate the feedings into the stomach. I don't have any local medical support for the kind of research...
  16. KRR

    Raw and fermented foods for gut and immune health

    As a former nutritionist, of the independent research persuasion, I've always been a proponent of "live" foods in general - raw, naturally fermented, even raw animal products such as eggs, some fish (raw or marinated), raw dairy (where available) and some meats all from highest quality sources -...
  17. KRR

    Dr. Chia current work?

    Re. Thyroid antibodies, I don't recall, but standard thyroid panels are always negative. Well, except when I once specifically asked for FREE T3 and then my doc was stunned to see that low, when TSH was "normal." I couldn't tolerate any hormone replacement, though. With the recent week on...
  18. KRR

    Dr. Chia current work?

    It just occurred to me - about Equilibrant being contraindicated if you have autoimmune tendencies, I saw a post suggesting that this extended to family members as well. My father had rheumatic fever as a child. I have always been negative for ANA, so doctors always ruled out autoimmune disease...
  19. KRR

    Dr. Chia current work?

    Thanks. Actually I've been on disability for 30 years, starting with ailments that I now know were related to CFS. It's been quite a journey, and I feel I'm at a turning point now, thanks to this forum for being a powerful catalyst for that.
  20. KRR

    Dr. Chia current work?

    @Oredogg , thanks for weighing in on this, and it's wonderful to hear that your wife is having such a good experience with Dr. Chia's protocol. If you don't mind my asking, how is the consult at no cost? I am planning a phone consult, which his office doesn't book until the lab results are in...
  21. KRR

    Dr. Chia current work?

    Thanks Mary. Yes, I had cortisol checked a while back - low in the morning, high at night, so obviously there are issues. But I think the nervous system issues are pretty complex, and the type of micromanaging I've done in the past has often made things worse, so I'm really looking forward to...
  22. KRR

    Dr. Chia current work?

    Thanks, I found out from Dr Chia's office that Quest and Labcorp are the only two labs that he deals with. So I asked for the requisition form for Labcorp. Those are what I'm calling specialized labs. I live in a good sized city but the only Quest or Labcorp labs are an hour in either direction...
  23. KRR

    Dr. Chia current work?

    Thanks so much for the excellent material!
  24. KRR

    Dr. Chia current work?

    Great, thanks for the encouragement. So I guess there aren't significant contraindications. I've never been able to clearly determine whether I'm more in the fatigue camp or the inflammatory camp, as I seem to have a lot of both.
  25. KRR

    Dr. Chia current work?

    Also, as a patient needing to conserve energy and zero in on the key research points, any particular recommendations for reading?
  26. KRR

    Dr. Chia current work?

    Thanks so much! That's very encouraging, and I'll look into those specifics. I had bought some Equilibrant but then had some doubts as to whether I should try it on my own in the meantime, especially since I'm so sensitive to everything.
  27. KRR

    Dr. Chia current work?

    Over a year ago I had planned to do a phone consult with Dr. Chia, as his work seemed the best fit for me. I learned that I would need to go to a specialized lab locally for bloodwork that he would order, before the consult. Well, the two labs he deals with are both an hour away from me, and in...
  28. KRR

    Buteyko

    Yes, but be careful with yogic breathing practices that include deep breathing. My own assessment of this is that yogic breathing was developed for a different population that had a different constitution. Most of us modern people need to calm the sympathetic fight or flight response and...
  29. KRR

    Buteyko

    Buteyko method is great for so much more than just asthma, as it resets the autonomic nervous system. I began to sleep better in very little time. The rest is slow going for me, though, but I know it's helping. A very simple exercise is to cup your hands over your nose to reduce air flow, for a...
  30. KRR

    Buteyko

    Yes, and I had a private Skype session with him too. He's a wonderful teacher. But I'd say you could get started with understanding the basics and doing some beginner practices in the book.