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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. J

    What is there to try next?

    really. I had porphyria tested and had elevations in blood stool samples. Drs had no clue what it meant or what to do for it. I wonder if this is a common finding in people with cfs who actually test for it.
  2. J

    Update on potential long-term risks of vaccines

    I mean in a way it is sorta relevant. Seeing as the vaccines weee rollled out at “95 percent “ effective and “barely any side effects” - similar to the lab leak hypothesis- any contradictory opinions or information has been mostly shut down. And seeing as they are pushing these vacicines hard on...
  3. J

    Update on potential long-term risks of vaccines

    Last year at this time it was “racist” to suggest maybe the virus came from a lab.. it’d be totally hilarious if it wasn’t so “1984” . Things are “conspiracy theories “ and “unscientific” until the unspeakable things that go against the agenda have been kept quiet long enough for said agendas...
  4. J

    Bhupesh Prusty - latest research study

    It’s clear to me these people obviously have no clue and are throwing darts. Let’s see- they were so quick to come up With “long covid” for a virus that was only about 4 months old at the time(I still haven’t quite figured out how that’s possible- I mean the mainstream medical establishment...
  5. J

    Herpes Veridai protocol (5-ar inhibitors)

    I’m sure everyone appreciates it. However my recollection from the locked thread was that there was plenty of questioning/skepticism about the treatment theory even by those of us trying it. This very thread was made in response to me being concerned about the hormonal aspect of the protocol. So...
  6. J

    Herpes Veridai protocol (5-ar inhibitors)

    Massive medical experimentation on “healthy” people via big pharma=Amazing miracle of medical “science”. Suffering chronically ill people experimenting to help themselves= irresponsible.
  7. J

    Herpes Veridai protocol (5-ar inhibitors)

    It’s a well thought out post but at the same time- are we all adults here or just in name only? I believe people should take responsibility for themselves as much as possible - therefore I’m sure everyone experimenting knows this is totally untested theory and are willing to take the chance or...
  8. J

    93% of CFS patients tested positive for mold/mycotoxins?!

    All I know is I spent the last year and a half in a mold riddled apartment. My condition was deteriorating much more rapidly than at any other point in the illness. I got lucky and got out a couple weeks ago. I’m also doing the herpes protocol but just moving has made my sleep better and I feel...
  9. J

    Herpes Veridai protocol (5-ar inhibitors)

    As far as I can tell it’s just the reishi and ecgc which are the androgen antagonist. If we were taking these at normal dosages I wouldn’t even be mentioning this. But since the treatment calls for multiple dosing per day I thought it’s worth discussing.
  10. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    Yes definitely expensive for those of us debilitated enough not to have a sustainable income. For me though at this point I don’t have a choice.
  11. J

    Herpes Veridai protocol (5-ar inhibitors)

    Thanks for replying ,Joshua. The balancing aspect makes sense. For me however my testosterone was only really low at the beginning of my illness- low enough in fact to get prescribed testosterone. My levels got better though but I did have relatively low free testosterone with super high shbg...
  12. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    edit wrong thread
  13. J

    Herpes Veridai protocol (5-ar inhibitors)

    Thx @godlovesatrier for creating the thread. I shouldn’t have included accutane although it has similar side effects it’s not a 5ar inhibitor. Prostate drugs like svodart etc are similar to finasteride. Joshua has made no secret that androgen reduction/blocking is a huge part of his protocol and...
  14. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    look up post finasteride or accutane syndromes online and you’ll find plenty of horror stories of men taking these 5ar inhibitors and being severely damaged.. now, I -am not- saying that the ones in this protocol do the same thing… however there are a few of them in here being taken at high...
  15. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    Definitely have been hit hard with mono/flu symptoms. Also probably made worse by mowing the lawn the other day. But it’s been interspersed with clarity/energy , which I never get with classic PEM. As a male however I admit I’m a bit concerned with the emphasis on androgen blocking and 5ar...
  16. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    that’s fine. I literally never saw him one time give any credence to anything that even slightly deviated from the by the book approach. No one is saying not to be discerning. But if cfs patients hung on a guy like this every word and followed his line of reasoning you may have a viable...
  17. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    Not saying anything about the potential of this being a cure but I’ve been reading thes forum for a long time and johnathan edwards disregards anything that doesn’t fall within his view of things.”science” is constantly evolving , his views appear very static. Just had to get that off my chest.
  18. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    It’s crazy to me that someone w true cfs is actually talking about “hitting the gym”. I guess you must be really mild or something cuz that’s not something remotely on my radar even on my best days.
  19. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    definite liver weirdness and face feels hot after upping oat bran and full dose reishi today. Liver feels as if I went out drinking last night lol. Guess it’s a sign of something. Not pleasant . Spine also feels “inflamed”. Very strange but aligns with what’s been said before.
  20. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    Do you possibly have any other circumstances like mold for instance ? I live in a mold ridden apt that im Currently working on extricating myself from in the next month. Just thinking of things that could *possibly* interfere with this. I’m not sure it even would but just throwing it out there.
  21. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    Pizza cures everything;)
  22. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    Ok makes sense👍 Just as an aside/Can I ask how long you’ve been in hcg?is it for testosterone support? I took it years back when my cfs was milder and found it beneficial. Not trying to derail the thread just curious.
  23. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    Appreciate the post but you’re also on a million other things including hgh and hcg. I’m not really sure how you could possibly know for sure what’s causing what and as powerful as these combinations of supplements are proported to be , those other things have an equally if not more so powerful...
  24. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    Green tea give me nausea as well but only on an empty stomach, did you take on empty stomach?It’s possible that it was that or the powder went down the wrong airways haha. Anyways hope you feel better!
  25. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    Sorry to hear. Can I ask why you think it’s definitely the ala? You’re taking dozens of things so just wondering.
  26. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    hey even if that’s all it is, it’s better than laying there doing nothing but wishing and hoping that within ten years there’s a magical treatment(which will most likely involve dietary adjustments and medications and supplements anyways).
  27. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    13 g oat bran?? Isn’t the recd dose just 1000 mg at a time? I’ve just been taking half a tablespoon at each meal. Sounds like your eating a whole bowl haha.
  28. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    I tend to doubt it, the amount of alcohol is really minuscule and I’ve never had this reaction to alcohol in my life. I guess to be totally sure I could order the lef product and test it out. Although I am hesitant because whatever it was has stopped since stopping the reishi two days ago and it...
  29. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    Thanks for the response. Nice to hear it’s doing things for you too. I can’t afford to continue to let my life pass by in a passive position waiting for a miracle from researchers etc, so at the very least it feels good to be taking action even if this doesn’t end up being the full answer. Yeah...
  30. J

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    It’s host defense alcohol extract. According to the label ot has no other ingredients besides the reishi and alcohol.