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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. Soundthealarm21

    For someone in need of 23 and me, I have a $40 off voucher

    @satori I will send you a message with the link!
  2. Soundthealarm21

    For someone in need of 23 and me, I have a $40 off voucher

    So apparently 23 and me settled with a law firm and I got an email saying they had disbursed $40. Well it turns out it's really a coupon which makes no sense because anyone part of the settlement would already own the thing and this settlement would only be trying to get more people to buy their...
  3. Soundthealarm21

    Black Mold - Is this really a thing?

    I've recovered significantly ever since I got out of a house with black mold problems
  4. Soundthealarm21

    Is there anything like the mayo clinic in the UK/Europe?

    I don't think she wants it for CFS per se, but to see if there is another answer that her doctors have missed or in addition to CFS.
  5. Soundthealarm21

    Been gradually getting worse for years, huge drop last month

    Well it's not a normal test in hospitals. At least not any I've been. It might be a good idea to get your house checked
  6. Soundthealarm21

    Been gradually getting worse for years, huge drop last month

    Have you been tested for mycotoxins/mold either in your system or in your living space?
  7. Soundthealarm21

    Detection of Mycotoxins in Patients with CFS

    I'd say the first thing you should do is get your living space checked for mold even if there is no obvious sign of water damage or anything. If there is a presence of mycotoxin producing mold then it needs to be re mediated or you need to leave and go somewhere clean.
  8. Soundthealarm21

    Detection of Mycotoxins in Patients with CFS

    I've never heard of that guy. Had anyone else?
  9. Soundthealarm21

    FDA approves new type of sleep drug, Belsomra

    Been a while since I've been in this thread but have you ever tried clonidine? That stuff knocks me out night after night. I take .2mg of clonidine, 25mg of Trazadone, and 1-2 mg of melatonin sublingual.
  10. Soundthealarm21

    Detection of Mycotoxins in Patients with CFS

    Sorry it took me so long to respond. I'm currently in a apartment. We're building a new house. We were supposed to be in it in mid February but it got destroyed in the tornado in Rowlett so we had to start over. New date is looking like July or so. Our house is being built rather mold proof and...
  11. Soundthealarm21

    Detection of Mycotoxins in Patients with CFS

    Got out of a mold contaminated environment and improved immediately. Made sure I ate an at least semi decent diet that had plenty of fats and omegas. Those are the main two things that did something. It's why I continually post on this thread to everyone asking questions about doing Brewers...
  12. Soundthealarm21

    Detection of Mycotoxins in Patients with CFS

    When I first started with the methylfolate and B12 I couldn't handle them. It sucked taking them. I could handle a fraction of a B12 pill and within a few minutes of taking a folate pill I wouldn't be able to breathe properly and just overall felt god awful. I stopped even bothering trying...
  13. Soundthealarm21

    Detection of Mycotoxins in Patients with CFS

    Not sure if you were responding to my post. If you were: Yeah this is what I was thinking. Adrenaline can definitely help you out. Could be that being around a bunch of people increased your stress levels and your body responded @jason30 although I definitely have no way of knowing that. Just...
  14. Soundthealarm21

    Detection of Mycotoxins in Patients with CFS

    Well this thread is kind of about mycotoxins and treating them in general. It just turned into discussing Brewer and amphoB kind of stuff a while back. That and @foxy loxy and I have discussed HBOT in this thread so I see why @jason30 would ask in it. Lol regardless of that explanation, I...
  15. Soundthealarm21

    Detection of Mycotoxins in Patients with CFS

    I don't know what you mean by mild or hard. Let me know what you mean and then I can answer better!
  16. Soundthealarm21

    Detection of Mycotoxins in Patients with CFS

    @foxy loxy It definitely helped me feel better at times. The problem is that when I did it I was still in my house with mold (obviously didn't know it at the time!). I haven't had a chance to go again as we're building a new house right now, but i'll probably go do 20 more hours after that.
  17. Soundthealarm21

    Mark Zuckerberg donating 99% of his shares to charity

    Lol, with some people I never know...
  18. Soundthealarm21

    Detection of Mycotoxins in Patients with CFS

    Not sure if this has been posted here, but this is the point I was trying to make about ERMI much earlier in the thread. https://www.survivingmold.com/legal-resources/dr.-shoemaker-essays/emsl-lab-director-acknowledges-epa-investigation-offers-free-repeat-ermi-testing
  19. Soundthealarm21

    Would you try Rituximab?

    Let's at least be realistic and remember this trial was open label and without a control arm. Don't think it's time to get convinced yet, personally. Is it promising? Yes. But a study (the majority of the patients are the same ones from the first study as well) that is open label without a...
  20. Soundthealarm21

    Would you try Rituximab?

    Definitely going to need a lot more research before I consider it.
  21. Soundthealarm21

    Fluge & Mella's pre-trial study highlights life-changing potential of rituximab

    Thanks to both @Simon and @Sasha as that was well put together and easy to read. Cheers!
  22. Soundthealarm21

    New Fluge & Mella rituximab study: post MEDIA LINKS here

    I think Wessley just thinks we'll forget or something. I mean some of us have pretty bad brain fog, but not that bad...
  23. Soundthealarm21

    New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

    I see his quotes and I really just want to slap the dude.
  24. Soundthealarm21

    Hate doing nothing

    @melc23 Sorry to hear about your frustrations. Trust me, we understand here. As far as mental activities go, if they don't make you feel worse later on then there is no harm in doing them. However, if you're forcing yourself to do them and you feel worse afterwards then it's probably best not...
  25. Soundthealarm21

    Detection of Mycotoxins in Patients with CFS

    We use an air sample test from a licensed guy. He sends it off to a lab and we get the results.
  26. Soundthealarm21

    Detection of Mycotoxins in Patients with CFS

    I hate to be the bearer of bad news, but starting a treatment on removing mycotoxins from your body will do no good if you're still in a home that is producing mycotoxins. You'll just be breathing in what you're trying to kill.
  27. Soundthealarm21

    Detection of Mycotoxins in Patients with CFS

    You need to start by testing your home for mycotoxins first.
  28. Soundthealarm21

    Detection of Mycotoxins in Patients with CFS

    I have a question for people doing Brewer's protocol or other treatments as that's what this thread has kind of turned into: Have you made 100% sure you're no longer in a mycotoxin contaminated house? Nothing Brewer, nor Shoemaker, etc does will make any difference if you're still breathing the...
  29. Soundthealarm21

    Found mould in the cupboard next to my bed. How to safely remove it?

    I don't think you've got a choice, personally. Mold is under study as a cause of people's CFS (mine being one of them) and trying to save things that have been contaminated is a battle you've lost before you've already begun. Bleach will not kill the mold. Hydrogen Peroxide will, but you won't...