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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. ttt

    Thymosin Alpha 1

    Could someone please tell me what is the difference between Thysomin Alpha-1 and Thymalin?
  2. ttt

    Diagnosis for Disability

    @Haso , two reasons: 1) It is very psychologically harmful to me to take on the identity of "disabled." A big part of how I've dealt with this illness is mindset. I refuse the idea of "incurable," and I refuse the idea of "disabled." And going into it with this mindset, I have made great...
  3. ttt

    Diagnosis for Disability

    Is there a diagnostic code for SEID, @Rufous McKinney ? At this point, without an ICD-10 code for this illness, I'm not sure what doctors do for people who have this illness and need to label it for disability.
  4. ttt

    Diagnosis for Disability

    Thanx, @JoeDoaks . I guess what I'm wondering is whether there's a diagnostic code yet for ME/CFS and whether that's considered disabling, or if there are other diagnoses that are being used for situations like this. I already have a disabled parking placard for my car, but that was given to...
  5. ttt

    Diagnosis for Disability

    Thanx, @jesse's mom . No, not social security. I just need to have that label of "disabled" so that I've got extra legal protections against my landlord, who is harassing me and trying to get me out of my apartment that I've lived in for 26 years so he can jack up the rent. I'm working my...
  6. ttt

    Diagnosis for Disability

    I have resisted the "disabled" diagnosis for years, because I don't want that on my record, but I'm in a place where I may need to bite the bullet and get that label, because my landlord is harassing me, and I have more legal protection if I'm legally disabled. What diagnosis is used nowadays...
  7. ttt

    Metabolic Diet & Supplements - an Exploration

    Did anyone happen to download the PDF for the SNS dominant type? The link for it no longer works, and that's my type, so I'd really like to see that PDF.
  8. ttt

    Diet, Macronutrients, and Metabolism

    Thanx, sb4. So do you think that as long as macros are kept separate from each other (e.g., mostly carbs at breakfast, mostly fat/protein at lunch, mostly carbs at dinner, and a fat/protein bedtime snack), this would work optimally? Or do you think it's more useful to look at it in a bigger...
  9. ttt

    Diet, Macronutrients, and Metabolism

    Runner5, how long have you been eating that way? And why do you think the thread will get locked?
  10. ttt

    Diet, Macronutrients, and Metabolism

    I'd like to talk about diet -- high carb/low fat vs. low carb/high fat. I spent about 10+ years eating low-carb (sometimes keto, sometimes not), as I thought that was healthy. The highest glycemic food I would eat is cabbage. Last year, I did the unthinkable -- I went on a high-carb...
  11. ttt

    Test for 37 kD RNase

    Lafarelue, the guy I spoke to said he didn't think anyone was doing it, and he was vague about why they stopped. Something about how they found out it wasn't helpful.
  12. ttt

    Test for 37 kD RNase

    Thanx, lafarelue. I just called VIP Dx (now called RedLabs), and they stopped testing for it several years ago. Bummer!
  13. ttt

    Test for 37 kD RNase

    Does anyone know where I can get tested for 37 kD RNase?
  14. ttt

    New Course About Chronic Illness -- "The Koan of Illness"

    I just saw this course and thought some of you might be interested. It's about understanding and working with chronic illness on multiple levels (practical, psychological, social, spiritual, etc.). I know the woman who's teaching it from one of my online groups, and she's wonderful. Her son...
  15. ttt

    NK Function - High

    I just had my natural killer cell function tested through LabCorps, and it's high -- 75.2 LU10 (reference range 5.8−59.2). So strange. A couple years ago, Quest tested it using LU30, and it was low. So what does it mean to have high NK Cell Function? Does that mean autoimmunity?
  16. ttt

    IL-13

    I just had the Cytokine Panel 12 from Lab Corp done. I think it's also called the Th1/Th2 Cytokine panel. Everything was normal except IL-13, which was quite elevated. Anyone know what this means?
  17. ttt

    Nagalase Testing Without a Doctor

    Thanx so much, Halcyon! I'm thrilled that chiros can write the order now. Appreciate your help!
  18. ttt

    Nagalase Testing Without a Doctor

    I'm gonna start GcMAF, and I need to get my Nagalase tested, but my doc doesn't wanna order any more testing for me. Any resources for how to get the test ordered without a doctor? I'm in the US.
    • ttt
    • Thread
    • Replies: 2
    • Forum: GcMAF
  19. ttt

    Raising Blood Pressure

    Thank you, Dreambirdie!
  20. ttt

    Natural Killer Cells

    Thank you, heapsreal. I already take electrolytes/minerals and 1-1/2 Tbsp./day of Himalayan crystal salt. Stimulants would be suicide for me, because I already have sooo much agitation and really terrible insomnia that requires 14 medications every night for sleep. And beta blockers further...
  21. ttt

    Natural Killer Cells

    Thanx, heapsreal. What does it mean to look into orthostatic issues? I have very low BP and mild POTS, but what more is there to do other than to acknowledge that?
  22. ttt

    Natural Killer Cells

    Thanx, SOC. None of my docs have seen the NK numbers, and frankly, I don't want to waste the money, because I doubt they know what any of it means. I've seen two ME/CFS specialists. One of them was a senile idiot who refused to look at my lab work -- he said, "I don't do that." The other was...
  23. ttt

    Natural Killer Cells

    Thanx, heapsreal. What does it mean when the NK count is normal but the function is low(ish)? Since I'm on the low side of the range, and ranges are usually way too wide, I'm assuming I should be considered lowish on the count. I've also had viral tests (are antibodies the same as titres...
  24. ttt

    Natural Killer Cells

    I had my natural killer cell count and function measured. Can anyone help me interpret these results? WBC Lymphs Lymphocites, Absolute - 1,746 (850-3900) Phenotyping Natural Killer Cells CD3-CD16+CD56+ (ABS) - 206 (70-760) CD3-CD16+CD56+ (%) - 12 (4-25) Natural Killer Cells...
  25. ttt

    Raising Blood Pressure

    Does anyone know of a good way to raise blood pressure? I eat 1-1/2 Tbsp. of Himalayan crystal salt every day and drink about 20 cups of water, but my BP is still really low.
  26. ttt

    SOD2 A16V homozygous mutation - anyone else?

    Ditto boohealth's question/concern, Bluebrid. And I'm also intrigued. How long did you take this stuff before you felt an effect? And what dosage do you take, and how much does it cost? Thanx!
  27. ttt

    What is your NK cell function?

    Oh, good! OK, so if he's using Quest, then Quest is OK. Thanx, Nielk!
  28. ttt

    What is your NK cell function?

    Quest Labs would be the easiest place for me to get it done. Who's your doctor? I'm wondering if it's an ME/CFS specialist who's OK with Quest. Anyone else have an opinion on using Quest Labs for NK cells count and function?
  29. ttt

    What is your NK cell function?

    Could someone please tell me where I should get my NK cell count and function tested? Is this something I can get done through LabCorp or is it a specialty lab?
  30. ttt

    GcMAF and Calcitriol (Vitamin D (1,25))

    Hi, Sushi. No, not taking GcMAF -- still just contemplating it. I have a million concerns about it. I thought people with VDR mutations were supposed to be non-responders, or at least low responders. As for monitoring D 25 and 1,25, what are they wanting to see before and during the treatment?