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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. koco

    Every single symptom of "adrenal fatigue" matches caffiene withdraw

    Thanks, @Murph, for the reply. I'll update how I feel in several more weeks. Should be an interesting experiment. I'm just so glad the cbd is helping my mood throughout this. It's one thing to feel like shit, but if you're in good spirits, it's not as terrible.
  2. koco

    Every single symptom of "adrenal fatigue" matches caffiene withdraw

    Hi all. I'm looking at this thread because I have been off caffeine for two weeks and feel like shit. I have cfids, nk cell deficiency, fibromyalgia, dysautonomia, adrenal insufficiency, hypothyroid, asthma, ibs, mast cell disorder, and interstitial cystitis (Jesus, that's a long list). I was...
  3. koco

    Allergy Treatment - Allergy Shots - Immunotherapy

    Thanks for the reference, @Snowdrop. I'll take some time to read this article.
  4. koco

    Allergy Treatment - Allergy Shots - Immunotherapy

    @perchance dreamer, thanks for your feedback.
  5. koco

    getting worse from imunovir?

    Update: I was quite sick for over three weeks, but am finally recovered.
  6. koco

    Allergy Treatment - Allergy Shots - Immunotherapy

    Hello, I have experience with NAET. The NAET protocol defines allergies in a different way than does western medicine. NAET regards allergies as anything that causes sensitivity or weakness. Western definition of allergy is a histamine reaction. To illustrate, I had an allergy test and it...
  7. koco

    getting worse from imunovir?

    After a few days on Imunovir for complex immune deficiency issues, I became very ill with what feels like a terrible flu. I spoke with my specialist at NSU's Institute for Neuro Immune Medicine (Nancy Klimas' clinic) today and she told me to discontinue the drug. She explained to me that since...
  8. koco

    garcinia cambogia, saffron

    Update: I had about a week's worth of honeymoon period with this dose. I switched to taking it at night because I felt too dopey in the morning, which would be okay except that my job requires me to speak intellectually. After about a week, I actually started feeling depressed. I'm curious to...
  9. koco

    garcinia cambogia, saffron

    Hi all, while I realize this thread started three years ago, I just heard of garcinia cambogia recently. The claim of increased energy and serotonin caught my attention. I've been taking 500mg of a supplement containing at least 50‰ HCA combined with Ca, K, and chromium for a week now...
  10. koco

    illness & sexuality

    Thanks so much for taking the time to respond to my thread, @hellytheelephant. I appreciate your reminder to me that I have contributed to my own success in my relationship - your words bring tears to my eyes. Thank you also for the vote of confidence concerning my initiating sex. This is...
  11. koco

    illness & sexuality

    I've been struggling with sexuality issues in my marriage as a result of myriad illnesses and up til now, the only two people I've talked to about this is my husband and one therapist who helped me a bit, but with whom progress seemed to have plateaued. Last night, I was meditating before bed...
  12. koco

    Has anyone taken Ketotifen for MCAS?

    Thanks, @Gingergrrl. When you say "cromolyn (Gastrochrom) did nothing for me except GI problems", do you mean that the cromolyn helped with your GI issues or gave you problems? Also, how long did it take before you no longer felt sedated by ketotifen? I appreciate your insights. Mercifully, I...
  13. koco

    Has anyone taken Ketotifen for MCAS?

    Hi all. @Gingergrrl, I'm sorry to read about your difficulties. I realize your last post on this thread was several months ago. Are you doing better? Has something helped you? I just replied to another older thread where you discussed your paradoxical reaction to midodrine - I have had the...
  14. koco

    Has anyone had Midodrine make them sedated like a sleeping pill?

    Hi all. I began taking midodrine 2.5mgs upon waking and at noon six days ago for orthostatic hypotension and I also experienced extreme somnolence. I found this frustrating because although I felt I desperately needed to lie down and nap, I was unable due to the possible side effect of supine...
  15. koco

    High Intensity Training (HIT) and Body By Science

    Olliec, I'm glad you're finding success with Body by Science. I pray you continue to gain strength. Thanks for the feedback about your experience with Naltrexone. Once I was up to about 1mg, I noticed that I also felt marginally better. (As we know, marginally better is a relatively huge...
  16. koco

    High Intensity Training (HIT) and Body By Science

    Olliec, I certainly empathize with your conflict. At the most intense, I trained 7 - 8 times per week, following routines I learned from a female body builder. I was in such shape whereas if I had introduced dietary restrictions in addition, I could have competed in a figure competition (at...
  17. koco

    High Intensity Training (HIT) and Body By Science

    Thanks for reaching out with your experience, olliec. I've been awfully conflicted about working out, particularly in the last couple years since the symptoms of my illness have seemed to intensify. Striking the balance between conditioning and deconditioning seems to be the ticket. I've found...
  18. koco

    LDN: International Conference to Raise Awareness about a Ground-Breaking Drug

    Hi all, I'm a patient at the Institute for Immune Medicine at Nova Southeastern University. I've been diagnosed with CFIDS as well as cell-mediated immune deficiency. My natural killer cell count and activity are both below the 10th percentile. My cytokine activity is all over the place (most...