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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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Search results

  1. T

    Anyone here used HIV/AIDS treatment for CFS?

    Thank you so much for your detailed response and story. I certainly have a lot to think about, but I may go ahead with truvada soon and see if it helps. Thanks again
  2. T

    Anyone here used HIV/AIDS treatment for CFS?

    Really happy for you! I am still trying to decide if I should try this or not due to potential bad reactions/worsened fatigue. Can I ask how severe you were and was your primary symptom fatigue?
  3. T

    Detection of Mycotoxins in Patients with CFS

    In short, no. More started with a group of symptoms of milder on/off fatigue, heart palpitations, dizziness, anxiety (typical POTS symptoms), sinus congestion then followed. with repeated flu like symptoms and increased fatigue and eventually PEM. I did keep getting bad sinus congestion before...
  4. T

    Detection of Mycotoxins in Patients with CFS

    Hey, Thanks a lot for your advise, I'll def try that technique out. I'm sorry you didn't get results from the protocol
  5. T

    Detection of Mycotoxins in Patients with CFS

    Hey, I got it from a doctor here in the UK, not a patient of Brewer
  6. T

    Detection of Mycotoxins in Patients with CFS

    Has anyone been doing this treatment using a netipot? (attached pic) I find when using this, it actually gets deeper in my sinuses compared to the nasal atomizer. But my question is, is it safe to use the nystatin with a netipot?
  7. T

    Detection of Mycotoxins in Patients with CFS

    It was from 2016. That's interesting that he is still prescribing intranasal Nystatin less than a year ago. Maybe he made a mistake in the talk? Or perhaps he was only talking about it killing only yeast if it is swallowed? He just said Nystatin in the video. Here is the link.. it is from the...
  8. T

    Detection of Mycotoxins in Patients with CFS

    I am about to start Nystatin atomized into my sinuses, but in a recent lecture I saw online Brewer saying Nystatin is not effective against the higher molds, but only yeasts. I don't know if he made a mistake? As he did a whole study showing that it helped people who were positive for...
  9. T

    Full Remission Claimed

    Thanks so much! I think I'll go ahead and just try it, I'll get a kidney function test (and HIV test to make sure 100%) before I start taking them :)
  10. T

    Full Remission Claimed

    wow that's so good you're improving on it! I am also thinking of taking this medicine and can get it safely online, I'm just very worried it makes me worse? Is there a risk of making someone with CFS/ME permanently worse taking this?
  11. T

    clearing the brain fog/feeling -well-. Potassium/Magnesium

    Hi Gavin how are you doing now? I saw on a blog post you posted ages ago that the magnesium/potassium supplement helped get rid of your fatigue too?
  12. T

    Sinusitis Misery: Mast Cell Madness???

    what immune modulator did you use please?
  13. T

    yeast candida causing sinusitis, anyone??

    thanks!
  14. T

    yeast candida causing sinusitis, anyone??

    omg i thought i was the only one!! i swear i have some werid restriction at the back on my neck which clogs up my sinuses and may be at the root of my fatigue! oh just realised this post is very old.
  15. T

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    Thanks and that makes sense too! sorry also was wondering, do you think by increasing NO, it will increase adrenaline? As adrenaline definitely makes me more fatigued as well as other horrible symptoms. Thanks
  16. T

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    wow congrats! I really wanna try this as I do get immediate increase in energy when I drink alcohol! (But sometimes bad if I don't eat due to blood sugar) I have a bottle of Jack daniels in my wardrobe which I sip now and then when my energy is so bad that i can hardly leave my room. However I...
  17. T

    Pyruvate dehydrogenase function depends on thiamine (B1)

    sorry to hear that :(
  18. T

    Pyruvate dehydrogenase function depends on thiamine (B1)

    wow congrats! (sure you can excuse yourself for laziness :p) Can I ask how you were before, energy wise?
  19. T

    Pyruvate dehydrogenase function depends on thiamine (B1)

    Thanks! do you feel the combo of thiamine supplements have helped energy wise?
  20. T

    Pyruvate dehydrogenase function depends on thiamine (B1)

    Can I ask you where you get the Alinamin Ex Plus from? (I'm in the UK) Thanks!
  21. T

    Pyruvate dehydrogenase function depends on thiamine (B1)

    That's amazing! what kind of B1 are you taking? Allithiamine?
  22. T

    Anyone here used HIV/AIDS treatment for CFS?

    Has the viread/tenofovir improved your CFS/ME?
  23. T

    Planning to see Dr William Weir, Harley St. Any advice or opinions?

    Do you know how she is doing on it? I'm open to trying this as it can be purchased easily , safely and cheaply online
  24. T

    Anyone here used HIV/AIDS treatment for CFS?

    wow I really am thinking of trying a prEp/HIV medicine as I can easly get it here in the UK from safe online pharmacies verified from a London clinic. I am just worried it would just make me worse. I'm so desperate to try anything atm tho as I am 80% housebound. Do you know if there are any...
  25. T

    Anyone here used HIV/AIDS treatment for CFS?

    Do you know how ill these group of people are/were? I'm considering trying the HIV medicine tenofovir, can get it easily online safely in the UK. A clinic in London have tested to see if the HIV drugs from online are for real and all 100% safe. I don't really know if I should just go ahead and...
  26. T

    Nimodipine (Nomitop) - has anyone tried it ?

    That's great to hear you're getting benefit, I hope too that you get more and more! And yes, I do recall reading in Dr. Kristina Downing Orr's book that flu symptoms are a sign it may be working, I have my fingers crossed
  27. T

    Nimodipine (Nomitop) - has anyone tried it ?

    Hey Dechi, hope you're doing okay. I was wondering did you experience getting any cold symptoms since starting Nimodipine? I haven't had a proper cold like this in 6 years (since I've had CFS). Don't know if this is a good sign or not. I hope so!
  28. T

    Nimodipine for retrovirus-induced congnitive dysfunction

    Hope you find something that helps you soon!
  29. T

    Nimodipine for retrovirus-induced congnitive dysfunction

    sorry to hear. Did you start on a very low dose , like 1/4 tablet?
  30. T

    Nimodipine for retrovirus-induced congnitive dysfunction

    hey I know you posted this years ago, but did you get more success with Nimodipine? I'm taking it now and on 30mg a day so far, no results yet, but told by my doctor I can go up to 240mg a day