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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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  1. Jeremy C.

    What does Ampligen's effectiveness tell us in light of the latest research?

    Yes, it's had a good, though very gradual effect over time and has especially helped my brain fog. I believe it's got my viral load down and as I said, I seem to be fighting colds etc. now. No real effect on my physical condition though, which has only been declining. I don't feel it's given me...
  2. Jeremy C.

    What does Ampligen's effectiveness tell us in light of the latest research?

    My onset was gradual, following EBV. I continue to have immune issues. The things that really cause major declines now are viruses, which I catch really easily. I was doing quite well in 2015, but a nasty virus in early 2016 knocked me back to bedridden/housebound and I am still to recover from...
  3. Jeremy C.

    What does Ampligen's effectiveness tell us in light of the latest research?

    Unfortunately Bioclones is no longer making Ampligen. I don't know what is happening with the company, but I have had difficulty contacting them.
  4. Jeremy C.

    What does Ampligen's effectiveness tell us in light of the latest research?

    Okay. That's still good to hear though. My relapse came pretty much as soon as the Ampligen infusions ended.
  5. Jeremy C.

    Larifan as an Ampligen alternative? Has this ever been tried in ME/CFS?

    Not yet, but I have recently ordered some Cycloferon and Anaferon. My worry with these is that I have no idea how safe they really are, especially to take long-term. Is oxymatrine actually an interferon inducer? I was never sure whether Dr Chia was recommending it because it was an interferon...
  6. Jeremy C.

    Larifan as an Ampligen alternative? Has this ever been tried in ME/CFS?

    Thanks for starting this post @Jesse2233. Definitely something I am interested in! Yes, I was very keen to try interferon with all the difficulties in accessing Ampligen, but the side effects can be pretty bad. The one I worry about is that it seems it can trigger autoimmune disease. Also...
  7. Jeremy C.

    What does Ampligen's effectiveness tell us in light of the latest research?

    Neither Ridostin or Larifan are in the same class as Ampligen (see Table 1): http://cancer.cytoluminator.com/cancer-photodynamic-therapy/interferons%20inducers%20russian%20study.pdf Polyguacil is, but seems available only as eye drops and for injection into the retina. You can't buy Ridostin...
  8. Jeremy C.

    What does Ampligen's effectiveness tell us in light of the latest research?

    It does sound similar! Does anyone know anything about this drug?
  9. Jeremy C.

    What does Ampligen's effectiveness tell us in light of the latest research?

    From what I know about Whitney's situation, it seems exactly like mine before Ampligen.
  10. Jeremy C.

    What does Ampligen's effectiveness tell us in light of the latest research?

    Apologies, @Marky90, my brain fog managed to make me completely forget your experience with Rituximab! You have every right to be sceptical about treatments, given your experience, and there has been far more research into Rituximab. I personally would be wary of just about everything if I'd...
  11. Jeremy C.

    What does Ampligen's effectiveness tell us in light of the latest research?

    @Gingergrrl I thought I'd posted my story here, but I can't find it. It is posted on the Facebook group: 'Say YES to Ampligen for ME'. This is what I said there: 'Just thought I would share my experience with Ampligen. I became ill with ME in 1997 and by 1999 was completely bedridden and very...
  12. Jeremy C.

    What does Ampligen's effectiveness tell us in light of the latest research?

    Are you saying that Imunovir has allowed you to maintain the gains you made on Ampligen, @LaurelW? When I stopped Ampligen I relapsed, not to the point I was at before treatment (which was completely bedridden), but went from being completely physically active back to being housebound.
  13. Jeremy C.

    What does Ampligen's effectiveness tell us in light of the latest research?

    I agree @Marky90, but I wasn't making a criticism of scepticism per se. I was using the word sceptic in the vernacular sense. It was a reference to a number of people who post negative comments about Ampligen when all they have done is read the research papers, which are admittedly not all that...
  14. Jeremy C.

    What does Ampligen's effectiveness tell us in light of the latest research?

    Thanks, Jesse! No, unfortunately Bioclones was very vague and I was so sick when I began I was not in a position to ask questions (my brain fog was so bad I could barely form a sentence). I was just told that it can work with both a suppressed and overactive immune system. I have never really...
  15. Jeremy C.

    What does Ampligen's effectiveness tell us in light of the latest research?

    Bioclones, the company that conducted the trial I was on, always told me that Ampligen was an immune modulator and indicated that it would downgrade the immune system if there was autoimmunity.
  16. Jeremy C.

    What does Ampligen's effectiveness tell us in light of the latest research?

    Exactly.
  17. Jeremy C.

    What does Ampligen's effectiveness tell us in light of the latest research?

    Thanks for opening up this discussion @Jesse2233. Given that Ampligen essentially put me into remission while I was on it, I often wonder this. And given that it is such an expensive and difficult-to-obtain drug, I often wonder if there are other drugs that might have similar effect, but that is...
  18. Jeremy C.

    Update on Ampligen Availability in the US

    This was the advice of Bioclones, the company conducting the trial. It was just trying to wean me off the drug after I stopped it altogether.
  19. Jeremy C.

    Update on Ampligen Availability in the US

    Not that well. I was already starting to struggle then. Not completely relapsed, but not feeling as well as I had been on two infusions a week.
  20. Jeremy C.

    Update on Ampligen Availability in the US

    As far as I know, the company is still trying to get FDA approval for treatment of ME/CFS and similar approval around the world.
  21. Jeremy C.

    Update on Ampligen Availability in the US

    @Jesse2233 If you could PM me the name of the product manager in Argentina, that would be great! There are several people I know of trying to access Ampligen around the world and it would be great if we could share our information. I thought KDM stopped using Ampligen. As I understand it, the...
  22. Jeremy C.

    Update on Ampligen Availability in the US

    I have other files, but cannot upload them here.
  23. Jeremy C.

    Update on Ampligen Availability in the US

  24. Jeremy C.

    Update on Ampligen Availability in the US

    Yes, Ampligen is an double stranded RNA immune modulator and antiviral and also makes the body create interferon, though no-one seems to know exactly why it works for ME/CFS. But pretty much the opposite to Rituximab.
  25. Jeremy C.

    Update on Ampligen Availability in the US

    Two a week
  26. Jeremy C.

    Update on Ampligen Availability in the US

    Emerge Health can't communicate with patients: the Australian government is really strict about that, so it's not their fault. However, they can talk to you via your doctor. They have been really good with me, but will only answer my doctor's emails and have had long talks on the phone. I am...
  27. Jeremy C.

    Update on Ampligen Availability in the US

    I relapsed almost as soon as I was taken off the drug, but some of the effects lasted for about five years after that. I am housebound now, but in the five years after Ampligen I was able to go out and do stuff on occasion. It was push crash, but I can't even push myself that much any more. I...
  28. Jeremy C.

    Update on Ampligen Availability in the US

    I'm in Australia, @Jill. The trial I was on was run by the Bioclones, a South African company which was producing Ampligen in the early 2000s. Of the four people in my doctor's cohort of the trial, it was successful for 3 and the fourth had an allergic reaction. One person improved and never...
  29. Jeremy C.

    Update on Ampligen Availability in the US

    As I understand it, the Ampligen used in Argentina will not be the Hemispherx-manufactured Ampligen, but will be manufactured by another company (I think a Spanish company). This has happened before with a South African company called Bioclones. I was in one of their trials in the early 2000s...
  30. Jeremy C.

    Is there any way I can be treated with rituximab privately?

    @Marky90 Could you provide a link to this forum? I can't find it.