• Welcome to Phoenix Rising!

    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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Search results

  1. M

    A Metabolic Trap for ME/CFS?

    He just sent me an email, the 23andme reference was incorrect, he had the data he needed. Thanks!!
  2. M

    Anyone else have a massive improvement from Tyrosine?

    Hi @AnkeC, I'm having mixed results with my tyrosine. Did you have neurotransmitter or amino acid testing prior to check for deficiencies? I'm showing very low phenyalanine, and low tyrosine, so I supplement with both, which is helping with mood, but leaves me feeling a bit brain dead. Adding...
  3. M

    Hypoglycemia and Ketosis - your thoughts?

    While doing a search of PR for fatty acids I ran into this thread, and I was wondering if any of you already knew about fatty acid oxidation disorders? I did Genos whole exome genetic testing earlier this year, and my results show a homozygous ACADS mutation at 625G>A. This defect is related...
  4. M

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Ah, thank you for setting me straight on that, I certainly didn't intend to characterize an entire group of patients, and I hope no one thought I was saying every (or even most patients) are extraordinarily intelligent, nerdy, or non-athletic. You are correct, my wording wasn't clear on that...
  5. M

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    I'd be curious to see the immune response test results from a healthy person compared to a CFS patient. As in, when a healthy person gets sick, how comparable are their immune responses? Are we just immunologically over-reactive? CFS occurs when we run out of metabolic "fuel" to fight...
  6. M

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    This snail stuff is awesome!
  7. M

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    I did keto for almost a year, which helped with overall pain and improved my energy slightly. I am now unable to tolerate sugars (cane, honey, maple, etc) or onion. I believe I might have changed my gut bacteria...but no testing before and after to confirm that.
  8. M

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    @Vicki Cole thats what I heard too
  9. M

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Panel discussion!
  10. M

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Chris Armstrong noted Clostridia as one of the fecal markers. My clostridia was incredibly high on my Genova ION test. Edit: to clarify, he mentioned it while discussing the statistical results.
  11. M

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Started out on LiveStream, switched to the YouTube app on my AppleTV so I can watch on big screen and connect my headphones via Bluetooth.
  12. M

    Vaccine-triggered CFS linked to nasopharynx inflammation, and 81% cured or improved by treating this nasopharyngitis

    @rosie26, I misspoke. Per this article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3476754/#!po=82.9545, NALT (nasopharyngeal-associated lymphoreticular tissues) are only present until approximately 2 years of age in humans, and then disappear. So then, my mistake, was thinking NALT...
  13. M

    Pyruvate dehydrogenase function depends on thiamine (B1)

    Thiamine Deprivation Produces a Liver ATP Deficit and Metabolic and Genomic Effects in Mice: Findings Are Parallel to Those of Biotin Deficiency and Have Implications for Energy Disorders. https://www.ncbi.nlm.nih.gov/m/pubmed/28214879 The article notes thiamine is a coenzyme of PDH, and also...
  14. M

    Vaccine-triggered CFS linked to nasopharynx inflammation, and 81% cured or improved by treating this nasopharyngitis

    @Richard7, thanks!!! I did a quick check at Ken Lassen's blog, fascinating stuff. Brief synopsis; genetic tendencies plus microbiome changes and stress leading to CFS? He's even from the Seattle area (US), which is where I'm at. I'll be doing more reading on him after I've satisfied some...
  15. M

    Vaccine-triggered CFS linked to nasopharynx inflammation, and 81% cured or improved by treating this nasopharyngitis

    @Richard7 I was having acute neurological episodes (chorea, muscle spasms mid back with 7+ pain radiating up into skull on one side, sounding drunk, brain fog), which I think were caused by d-lactic acidosis. All conjecture, as they never tested my levels in the emergency room (I figured it...
  16. M

    Vaccine-triggered CFS linked to nasopharynx inflammation, and 81% cured or improved by treating this nasopharyngitis

    @Hip thank you for the response. I've been lurking for a while on the forums, and sincerely appreciate the matter of fact way you are able to explain complex ideas. This has helped me many times with my personal research. I'm especially intrigued by the commonality between this research...
  17. M

    Vaccine-triggered CFS linked to nasopharynx inflammation, and 81% cured or improved by treating this nasopharyngitis

    @Richard7, I am sorry to hear you have less than peaceful surroundings. The neighbors behind us have a dog, and sometimes the barking makes me itch inside of my skin. I lived in an apartment in my early 20's, and it about drove me crazy. Thank you for sharing your progress. I had already...
  18. M

    Vaccine-triggered CFS linked to nasopharynx inflammation, and 81% cured or improved by treating this nasopharyngitis

    @Richard7 Thank you, it seems I'll be tracking down some pharmaceutical grade zinc chloride. You're about 3 weeks in at this point? Any updates? I appreciate the detailed info about your methods. I've been swabbing with a manuka honey mixture, but I'm not seeing/feeling any clods. Maybe...
  19. M

    Vaccine-triggered CFS linked to nasopharynx inflammation, and 81% cured or improved by treating this nasopharyngitis

    Very interesting thread, thanks Hip for posting it. I wonder if the blood serum of the recovered patients compared with the patients who did not improve could help with Ron Davis's research into the dauer trigger, even if the trigger in PWME is not vaccine or adjuvant associated. Having the...