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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. JaimeS

    Comment by 'JaimeS' in 'My ME, Part V - What I Take Now, How it Helps, and General ME Advice'

    Ah, old me sounds so confident! This is just personal observation and not Fact.
  2. JaimeS

    Is there any positive upcoming news???

    Jen did start a Facebook for Nightengales: people with 'the constellation': ME/CFS, EDS, FM, MCAD and POTS.
  3. JaimeS

    Glucorticoids and Stress

    I'd like to point out that this is the foundation of Klimas's "metabolic reset" theory. She is even using RU-486 (which is "the abortion pill" not "Plan B") to block cortisol receptors. After some additional research, I'd much prefer if we could find something to use that blocks the...
  4. JaimeS

    Reuters 13th March 2019: Article with Sharp, Wessely, Per Fink and co attack Dr Tuller and ME patients

    Sharing other good articles is also awesome: I've been using the hashtag #sharegoodscience and even #CFS because that's how they're tagging their article. If people want to click on that hashtag I want them to get some good things, too.
  5. JaimeS

    Reuters 13th March 2019: Article with Sharp, Wessely, Per Fink and co attack Dr Tuller and ME patients

    Generally we do want to avoid responses, but Paul has the right to defend himself! You can also comment on the websites of the actual articles, we're just trying NOT to give them a 'signal boost' by sharing and incurring clicks.
  6. JaimeS

    Treatment with KDM miraculous so far, need help with dysbiosis though

    i did Dr Ohirra's probiotics -- they really seemed to help.
  7. JaimeS

    Comment by 'JaimeS' in 'OCD'

    Maybe this should be a new post and not a blog? Consider trying a decent B-based multi. B vitamins are supposed to help with obsessive-compulsive behavior and depression.
  8. JaimeS

    Pulsing Lactoferrin?

    Lactoferrin is in tears, but I wasn't aware it could help with this.
  9. JaimeS

    Pulsing Lactoferrin?

    I still am. Still helpful for fatigue.
  10. JaimeS

    Skyrocketing BP and HR after eating

    The hydrogen measured is also the product of other sugar intolerances and can even be due to SIBO... though I suppose you'd know for sure that something was up. :)
  11. JaimeS

    Skyrocketing BP and HR after eating

    That's diagnosed via AST and ALT levels, so far as I'm aware. Do you mean in some other way?
  12. JaimeS

    Skyrocketing BP and HR after eating

    "Fructose is an intermediary in the metabolism of glucose" -- what an interesting way to put it.
  13. JaimeS

    White Paper Fundraising Tool - Destination Jeff & MacKenzie Bezos?!?

    Definitely the US Congressional team has discussed things like this, and so has the USA Working Group...
  14. JaimeS

    Here comes the sun: Defending our summer rays

    I was looking at infrared, but not really sure about it yet. More research needed. The full-spectrum light *helps* with my circadian rhythm. I was waking up at the exact crack of dawn, seemingly to grab as much light as humanly possible. (This is NOT my natural wake-up time, btw, which is...
  15. JaimeS

    Skyrocketing BP and HR after eating

    Yeah, that's my thinking as well. Well-spotted! Basic liver function tests are good (though I'm told AST and ALT aren't super-reliable), and my liver processing genetic markers are also quite good, making dysfunction unlikely. But a lot of my digestive stuff would seem to be an issue with...
  16. JaimeS

    Discouraging News for Canadian ME Patients

    This thread is even more amazing in the warm glow of hindsight.
  17. JaimeS

    Here comes the sun: Defending our summer rays

    Oh, BTW I have a SAD lamp too: it helps, but not to the same degree.
  18. JaimeS

    Here comes the sun: Defending our summer rays

    The thing is, when I use the tanning bed I don't close it. I'm not actually trying to 'get tan', I'm trying to expose myself to UVB, so I just lie there with it open: then it doesn't get too hot. I also do the bare minimum on a Level 1 or Level 2 (where one is the lowest level) bed, which is...
  19. JaimeS

    Here comes the sun: Defending our summer rays

    Distinctly possible! I feel really bad in the wintertime (late Nov to late Jan, basically), but I also hate the hottest months. So in my case it's "also/and". :(
  20. JaimeS

    Here comes the sun: Defending our summer rays

    Yes, and sorry I didn't see this earlier. I've continued to monitor my blood every two weeks since then, and I've started going to a darned tanning bed -- seriously. Bump in WBC count after I do, and an increase in well-being/decrease in malaise. More when I have a "complete report" at the...
  21. JaimeS

    Skyrocketing BP and HR after eating

    A year later I'm here to say it's probably the fructose itself. I don't handle it so well. It seems to prompt a pretty swift pathogenic response, too.
  22. JaimeS

    Burning brain

    One of those pieces of "pop advice" sounding things that I have personally found to be very, very valid.
  23. JaimeS

    Assistance Required

    Yeah, I totally understand the impulse to stay on anti-fungals until you begin experiencing some severe issues. I did the same! Ornidazole in my case. For nerve pain issues I use Terry Naturally Healthy Feet & Nerves -- but I agree you should talk to your dr about how long you've been on...
  24. JaimeS

    Burning brain

    Yep. Same, although also storming does it for me. Unluckily, it is now Storm Season in SV where I live. No real "winter" here -- instead, the skies open and it rains buckets. When air pressure drops, partial pressure due to oxygen drops. That is: each breath contains less oxygen than it...
  25. JaimeS

    Burning brain

    I don't KNOW, but I've found that pH basic by Enzymatic therapy taken internally, and Olbas across the neck to restore circulation works pretty well. It's possible it's lactic acid buildup. I'm not a dr, this is not medical advice, etc.
  26. JaimeS

    My experiement with Nancy Klimas' protocol- Etanercept and Mifepristone

    @raghav I think you'd have to contact a mod personally.
  27. JaimeS

    My experiement with Nancy Klimas' protocol- Etanercept and Mifepristone

    Dr Klimas is very, very busy. She verbally asked me to contact her and then didn't reply! Her inbox is probably clogged with tens of thousands of messages. Dr Davis is the same. It took months to get ahold of her and have a meeting. It's just the way it is. Though I really do take your...
  28. JaimeS

    My experiement with Nancy Klimas' protocol- Etanercept and Mifepristone

    I recall that was one of my most out-of-range values. Even women are supposed to have some free testosterone. Mine was not there. All I was ever able to figure out was that this was "associated with fatigue".
  29. JaimeS

    My experiement with Nancy Klimas' protocol- Etanercept and Mifepristone

    She's not the only one who says that/thinks so. Ritux really did appear to work well on some individuals. The trick is figuring out whom. Because it's a pretty drastic therapy. You don't want an already-weakened individual to go through that, potentially making themselves worse.