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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. Critterina

    Detox & Methylation Panel

    You might get a better response if you tag the OP....but I forget how!
  2. Critterina

    NAC did something bad to me -- please help

    NAC and glutathione are very problematic for me - lots of symptoms including 7-9 lbs weight gain (inflammation) that resolves when I stop. Teh glutathione may have led to pitting edema that lasted several weeks. My diagnoses include histamine intolerance and mast cell activation syndrome, which...
  3. Critterina

    Lithium orotate, methylation and thyroid

    I found which genes indicated a need for Lithium in an old Promethease output that I ran on my genes. I had 10 out of my top 100 indicate Lithium. Obviously they were not all B12 and Folate cycle genes. You might try an analysis program on your genes to find out if it is indicated for you. Or...
  4. Critterina

    "B" Vitamin Supplement Makes CFS/ME Symptoms Worse?

    I have the exact opposite. I took DMG and found myself POUNDING on the piano - the same piano that I usually don't press the keys hard enough to make a noise. TMG is good for me. How different we are!! P.S. I have accelerated CBS, and mutations that obstruct turning homocysteine back into...
  5. Critterina

    "B" Vitamin Supplement Makes CFS/ME Symptoms Worse?

    Hi Steve, Many B Multi-vitamins are produced by fermentation processes, and many people (myself included) who have a constellation of symptoms that typically include OI are intolerant of fermented products (wine, cheese, chocolate, kombucha, tea, etc.) and several foods as grown (tomatoes...
  6. Critterina

    How to stop overmethylation from P5P?

    Are you anxious or just overstimulated?
  7. Critterina

    What do we know about CT38/Urocortin II?

    Frontiers | Acute Corticotropin-Releasing Factor Receptor Type 2 Agonism Results in Sustained Symptom Improvement in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | Frontiers in Systems Neuroscience What I understand is that they started at too high a dosage. When they tried different...
  8. Critterina

    Tiny amounts of glutathione make me tired

    It seemed to cause swelling (edema that shows up on the scale) for me, and I'm not sulfur sensitive. I tried escalating doses. I'll be trying again, but my doc wants me at 500 mg for the duration of my detox. Milk thistle may be an alternative (if my memory serves me.)
  9. Critterina

    Magnesium - what's best kind to take

    Here's my put on the subject: 1. Magnesium needs to be dissolved AND absorbed. Once it's dissolved, what it used to be with no longer plays a role in absorption. 2. Which magnesium you choose might be guided by your other nutritional needs. For example, your NutrEval says you need glycine...
  10. Critterina

    NAC & sulphur

    For the first question, if they product is pure NAC, I would say no, probably not. For the second question, I would say, theoretically, yes. I have food intolerances that include NAC, but usually a few molecules of something does not provoke a response. Whether that's really happening for you...
  11. Critterina

    Restrictive diet/arguing with test results

    I'm sorry if I wasn't clear, @Wishful , the 90 day window applies to food sensitivities, not allergies. I think it would be very dangerous to test antigens to which you've had a type 1 response after 90 days. There are no guarantees that the 90-day abstinence will work, but if it doesn't there...
  12. Critterina

    Restrictive diet/arguing with test results

    I understand that, in the absence of other complicating conditions (MCAS, for example,) food sensitivities will frequently resolve after at least 90 days of non-exposure to the food. I'm hopeful that is what happened to you!
  13. Critterina

    My 23 and Me Results: Can lifestyle override genetics?

    Behavior can overcome a lot of things. Your question made me think of this article https://news.llu.edu/wholeness/overcoming-aces-by-lifestyle which I probably wouldn't have read if I hadn't had a riveting conversation with her over lunch a few weeks before I saw it. I found her very credible...
  14. Critterina

    Looking for Mast Cell disease - Genetic Data help

    @Fogbuster, did you ever get any help? Find anything in your genes? I was wondering if you had hypermobility Ehlers Danlos Syndrome (EDS) because that makes mast cell activation a different critter, maybe with different solution...sorry to have found this out. :(
  15. Critterina

    Anyone tried Limbic Retraining: Dynamic Neural Retraining System?

    Interesting take on the program, @Nutella . I'm wondering what you think is dangerous, saying the words, standing up that long, or doing the hands motions? Interestingly enough, my integrative medicine doctor just prescribed the program for me (I don't have ME/CFS) and he wrote it in as...
  16. Critterina

    Becoming more and more sensitive to foods......

    Let me just resurrect this thread with a new understanding. I found (in 2014) that Benadryl eventually only barely made a difference, and not one I could count on. I did try ranitidine, but only when I thought I was going to eat foods with histamines (either on purpose or just eating food I...
  17. Critterina

    Fisetin, a flavonoid antioxidant, is a Mast Cell inhibitor

    @Sherlock, Thanks for the Theoharides info! I am not diagnosed with MCAS yet (and first time in this forum) but famotidine was the second drug added to my profile. (The first was levocetirizine, which I had been taking but new protocol doubled the dose.) The two drugs together made noticeable...
  18. Critterina

    Has anyone recovered from MCAS

    Ema, If there was a "super like" I would put that on your post. I just got a doctor who thinks I have MCAS - evaluation ongoing. Much love your way!
  19. Critterina

    Anyone tried Limbic Retraining: Dynamic Neural Retraining System?

    Guess what! My new doc thinks I have mast cell issues and along with a 4R gut rebuilding, has prescribed DNRS with the comment "ESSENTIAL!!!!" - I didn't think he'd heard of it at our first visit.
  20. Critterina

    Potential risks of thiol supps: IV glutathione, alpha lipoic acid (ALA), N-acetyl cysteine (NAC) etc

    @Gingergrrl , This is an old thread, but I was looking for someone who thought I had MCAS to tell them that now I have a doc who agrees with them. Now I see Ketotefin in your post - mine is being compounded...in fact let me go get it at the pharmacy before it closes. I have a 3-step program. PM...
  21. Critterina

    Critterina's Histamine Intolerance Journal

    Got my plan of action and he thinks it's MCAS. Whoever thought I had mast cell issues, this doctor agrees with you. No diagnosis yet, though, as it involves a questionnaire he forgot to give me and some labs.
  22. Critterina

    Critterina's Histamine Intolerance Journal

    OK, so it's been over a year since my last post here. Still working on it. I did 4 fasts this year: January, May, June, and last week. I'm narrowing down the amount of Mg citrate to clean the GI tract. I think that 2 tbsp. every 6 hours, starting with the last meal and going 3 doses or to clear...
  23. Critterina

    ALA concern

    You might try clinicaltrials.gov where I saw 133 hits on my search for 'alpha lipoic acid'. Most won't have results, but at least you'll know what they are studying.
  24. Critterina

    23andme

    You get the raw data with both, it seems. Check this before you order, because sometimes websites come up differently in different countries.
  25. Critterina

    why some people need more B12 then others

    I don't have PA, but I find that the number of doses (of sublingual methylB12) matters more than the strength of the tablet. I use the 5000mcg because it's cheap at Costco and I tolerate the other ingredients, but when I've used 1000 mcg I don't see a difference. What I do see is the difference...
  26. Critterina

    CLYBL

    Good question... 2013, before the FDA prohibited the release of health information and then reversed the decision. But they continue to update the results, and I just captured that screenshot today.
  27. Critterina

    CLYBL

    23andMe has the last word.
  28. Critterina

    Anyone use selfdecode?

    I haven't used the program, but I did read and print out some of their stuff. They are very general, and it is really important to research and reconcile the individual suggestions/recommendations with other recommendations, and to reconcile that with your unique you. I could recognize...
  29. Critterina

    Achey, poor circulation

    My thoughts went immediately to niacin/niacinamide/nicotimamide-riboside. Not saying we are the same, but for me, I use a sublingual NADH or ENADA (maybe that's the brand?) 20 mg, and for me it's when the weather is cold that I get what I get. It's something to look into. Best wishes.
  30. Critterina

    Pyroluria, is it real? I'm really skeptical and here is why.

    It seems to me that the best approach to this situation is risk mitigation. If it's really dangerous to have a high result, pursue it - not treatment at first, but confirmation of the high lab result. You may also confront the lab with the low result saying that you think there may have been...