• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. S

    Getting over the intolerance to antivirals

    So what you are saying, is that for those of us who didn’t tolerate Antivirals right away there is basically no hope to tolerating them in the future?? That’s not a good situation to be in at all...that’s very discouraging. But what distinguishes a ‘hyper sensitive’ person from one who...
  2. S

    Getting over the intolerance to antivirals

    What is an effective way to take the Antiviral medication, for the ppl who could not tolerate it? Is there supplements to add to help clear the Toxins? Would boosting the immune system or other supplements help? If it’s not herx, what do we take to make the process easier? Why does it happen...
  3. S

    Which supplement has done the most for you?

    Inosine. It has made me feel much better. I highly recommend it, felt much much better on it. it’s affordable, and you’ve got nothing to lose. I improved 1-2 points on Inosine. People have different bioavailabilitys.
  4. S

    Getting tested for CMV, EBV & HHV6

    Curious about Coxachie, isn't that test done in a specialty lab, and only in the US?
  5. S

    Which Virus/Bacteria could it be??

    When you say “immune compromised” - could that be something simple, like poor nutrition, or lots of stress? Or is this usually more serious, like surgery- or AIDS? What counts as being “Immune compromise”, I’m fairly sure it can be anything. I’m really just struggling to identify which virus...
  6. S

    Which Virus/Bacteria could it be??

    I tested for the regular VCA IgG (Non Reactive), EA IgG (Non Reactive), EBNA IgG (Reactive), those were the ones I was tested for. I wonder if there’s any I should’ve requested additionally? I believe the EBV is hiding somewhere, and that caused VCA to show a false negative! & Thank you for the...
  7. S

    Which Virus/Bacteria could it be??

    I’ve been really struggling with this, so I needed to seek help... Please do try to advise if you have the knowledge, maybe somebody is informed enough to help, because I’m having a difficult time trying to resolve info about this. Has anybody else been struggling to find which viral infection...
  8. S

    Confusion about EBV and antivirals...

    Thanks so much guys, the only question I have is: even if I did test positive for EBV, no Dr would prescribe the Valtrex. Unless they are a CFS specialist, they won’t prescribe the Valtrex. Only an understanding CFS specialist would, any other Dr would say that the virus would just clear on its...
  9. S

    Confusion about EBV and antivirals...

    I thought I’d post about this, maybe get lucky enough to get some help. and maybe be pointed towards the right direction. because I am currently so confused... How important are Antivirals in a Chronic EBV infection and how likely is a regular GP to prescribe them? Could I get more info on this...
  10. S

    POTS Treatment / Salt Tabs & Electrolyte Powder

    Oh wow, that’s amazing!! So fixing OI must be part of it, I shall look into mitochondria and glucose, I knew it there had to be something that was missing...I just hope to God that they find out soon... Energy is a huge point when it comes to this. :(
  11. S

    POTS Treatment / Salt Tabs & Electrolyte Powder

    Thank you so much!!! You don’t happen to have a resource on how to fix the lack of Energy/ what this lack of energy is connected to, in CFS? Any info in that? Like, what causes us to not produce enough energy, any info on that would be so amazing. Just energy production/storage in cfs, like...
  12. S

    Is CFS a chronic inflammation? (Herbs)

    So would I able to ask you this: the whole “energy” aspect, is it connected to ATP and mitochondria, or is it more in-depth than that? What is it in CFS that makes energy production so bad? If one’s #1 symptom is just not having enough energy; how would one go about fixing that, what needs to be...
  13. S

    crash due to mental exertion

    Yeah, it does happen to me, esp from reading too much, and even if I have a particularly “happy”, thoughtful or eventful day, I will be sick the next one...
  14. S

    POTS Treatment / Salt Tabs & Electrolyte Powder

    Thank you so much for this answer!! OI has been one of my worst symptoms: standing has become very hard, painful, and it makes all symptoms worse, it’s the worst thing ever for me :( Aches, fatigue, exaustion, really bad stuff. If you don’t mind me asking, how do I find out more information...
  15. S

    Inosine side effects, is this normal

    This is all very confusing to me, maybe you could help because I’m really stuck, and Ill, and must get out of this hole I’ve been dug in. So if I were to go to my GP, what test do I ask for first? I came back negative for Moninucleosis: what do I ask for next, what are all those tests, or...
  16. S

    Inosine side effects, is this normal

    So Inosine and other Th1 to Th2 regulators: do they need to be taken only if you know you have a confirmed Virus? Because I believe my CFS was caused by just stress, or an unknown reason currently... so is there gonna be benefit for me to go this route?
  17. S

    Treatments that have worked??

    I am so ill, really just can’t do this anymore..Constant pain, constant aches, I am unable to function at all anymore. I’m sleeping most of the day, with no energy for anything. It’s become really bad. Terrible brain fog, cognitive issues, no motivation... Any time I leave the house, I get...
  18. S

    Inosine side effects, is this normal

    Yes I meant to say 250mg, can’t edit the topic. but I have since quit the medicine because I couldn’t tolerate it.
  19. S

    Inosine side effects, is this normal

    ive been feeling HORRIBLE lately, literally worse than I normally feel. These past 2 days have been hell. Lots more body aches, lots more fatigue, headaches, can barely get out of bed/go out, and bad crashes from everything... just really sick physically and mentally (no motivation, brain fog...