Hi Kelvin - many thanks for that detailed reply and the link to your interview with Dr Lapp, which was fascinating. It sounds very hopeful that Ampligen might get FDA approval relatively soon; what that means for us in the UK, I don't know.
That's an interesting point you make about negative stories about Ampligen coming from short-traders. When I was googling for XMRV in the early months after the Science study, some of the hits I got were to a Yahoo! stock traders message board and they were talking about Ampligen in the context of XMRV. Even knowing nothing about stock trading, it seemed clear to me that some of the stuff that was being said (not just about Ampligen, but XMRV and CFS) was just beyond ridiculous and appeared to be just a strategy to prevent others investing (I have no XMRV axe to grind but it was just wildy inaccurate). There was also a lot of very negative stuff about how Hemispherx have behaved as a company, which I couldn't judge but which I think I may also have seen on PR so it might have some basis.
We have to remember that not everyone cares about other people, just money - as opposed to Dr Lapp, who seems from your interview with him to be the very opposite!
That's interesting that you spoke to so many people about their Ampligen experience. I wonder if anyone has done a systematic long-term follow-up study.
This is a really interesting discussion--thanks, you guys!
I just want to clarify about my relapse, so you can see just how much it took for me to tank. After I went off the drug, my husband died of cancer, I went back to school part-time, then full-time, then my gallbladder went bad and it took two months of pain and tests for the doctors to figure out what was wrong with me and do the surgery. My dad died unexpectedly the day of my surgery. Then I was addicted to the pain meds they had been giving me and it took me 4 months and a stint in detox to get off those drugs, and the better part of a year to feel completely over it. In the meantime, I went back to school full-time again. Interspersed with all this was a trip to India and two trips to Japan. It was only after the last 6-week intensive study trip to Japan that I started to go downhill.
That is one heck of a lot of stress. But like Sasha was saying, I had no idea that I could get sick again or I would have been more parsimonious with my activities.
Needless to say, I'm not going to make the same mistake again!
Hemispherx has had a lot of problems in the past. I daresay they are still struggling with a number of problems. But that doesn't mean their drug is any less effective. I think they've managed pretty well for a self-funded company for as long as they have without a big moneymaker product like big pharma usually does.
Laurel, I'm really sorry you had such an awful time. What a lot of dreadful, stressful things to happen. Thanks for telling us about this - it helps to show how resistant to relapse it is possible to be, if it took all this lot to finally overset you.
I had about seven years of near-normal function, although with lots of what I thought were colds but which in retrospect were mini-relapses (an immunologist later told me that the fact that my nose never ran indicated that it was an old virus reactivating over and over). In order to relapse again, I had built up to a full-time job with a long daily motorway commute plus a social life in the evenings (because I was single, all of my time with friends was outside the house). I was also teaching for fun on an evening class. Like Laurel, if I had had a clue that it was possible to get sick again I'd have done things differently - I'd have jacked in my job to protect myself.
I wish I could put it past myself not to make the same mistake again but when you're well it's so hard to remember... oh well!
I think the only concern with Hemispherx is whether they are fully disclosing all the clinical trial info that we would want in order to judge efficacy and safety. I can't remember what the criticisms of them were - if it was just about them being rubbish at business I wouldn't mind that!
It would be good to have a gathering of all the info from patients and researchers on one place - this seems a good thread for it to carry on. I looked on the internet and there is very little on it. Does anyone have any research statistics on Ampligen? I am so pleased for Kevin - people have been talking about ampligen for such a long time and I've always thought I'd wait till it was oked by the FDA. Good on you Kevin for not waiting. It helps us all to know what works even if it is only for some.
I happen to know a doctor who was part of the original Ampligen trials for both AIDS and CFS patients. So I asked.
This doctors' results were approximately 70% of both AIDS and CFS patients had improvement in symptoms and immune function while on Ampligen. The rest did not improve. Improvement ranged from mild to the 70-80% functionality mentioned in this article by the more fortunate or extreme end of the bell curve. In other words, a 70% chance at some improvement if not significant improvement. The AIDS patients immune systems stabilized.
In any case, once off the drug, the AIDS patients died and the CFS patients tended to go back to sick.
It should be noted that there was a post on CFS Central I think about one of the early Ampligen patients who got much worse, so don't count that out of the realm of possibilities either. Eventually died rather recently the article stated, but my memory is...well bad. Here is the link:
So look it up and try and remember it yourself, please if interested and can.
And Kelvin, thanks for naming that Fear and Loathing in L.V. dude (I still can't remember his name, although I recognized it when I saw it). Suggests your name recall function is working better than mine for sure. As for his corpse raising non-post, at least you used to know how it is (to rant, that is). Hopefully for you it remains a used to know how to deal. Unless of course you want to jog down dark shadows lane.
So do tell, have you been off exploring in N.C. at all?
Early responders having a favorable long term prognosis, is common with other types of Tx as well. It's considered a strong predictor of long term success for people on Interferon Tx for HCV.
Why does this drug Ampligen have such a long history and is still not approved for use somewhere in the world, if it helps even a portion of people suffering from CFS? The "Conflict of Interest" bothers me with regard to Dr. Lapp. I wonder if Dr. Peterson reports all his findings. I would love to beleive that people can get so much better even if not completely 100%, but your story sounds fishy to me. Just a gut reaction. It reads like an advertisement. I hope I am wrong. I will do more research on this drug. Best wishes to you despite my skepticism.[.QUOTE=Kelvin Lord;133431]Yes, 5150, I was pretty much non-functional by the time I arrived here late last December. As to the financial aspects and costs for treatment, clearly, it is a big investment at this time. Until Ampligen is approved, the only way to get it is in what is called "cost recovery" as part of a drug trial. Currently in the USA there are only 2 clinics now that I know of taking new Ampligen patients: Dr. Peterson at WPI in Reno and Dr. Lapp at Hunter-Hopkins Clinic in Charlotte. I think Dr. Bateman in Utah also has Ampligen patients but I heard she was not taking new ones at this time.
The "cost" in dollars, in a word, is expensive. Not just because you are paying for the drug, which costs $95 per vial, but for most of us here, we had to move from our homes and uproot our lives. So for me the cost was huge because I came here 5000 miles from South America, and had to rent an apartment, get a car, etc.
But at the final analysis, I came to the conclusion that I would invest whatever I could, sell whatever I had, to give my life a shot. After having tried EVERYTHING, including but not limited to Kutapression injections, Glutathione injectiions, B-12 injections, Valtrex, Valcyte and a slew of antivirals, Nuerontin, Klonopin, pure juice diets, whey protein, and countless more drugs and ideas, I came to the conclusion that Ampligen was my last hope. I based that on this quote from Dr. Lapp: "Everything else we've tried treated the symptoms; only Ampligen has been proven to treat the root cause, the problem."
So I was literally on Maslow's lowest rung, and decided, with my wife's support, to go for it, and moved here to get Ampligen twice a week for a year. For more on this whole perspective of sacrificing your money and a year to get a drug, you can read my thinking on my blog entitled: "My Peter Falk View of Ampligen"
For me, although it HAS been expensive, the cost was worth it, as I am feeling so much better. Hope that helps give a little more perspective to your questions. K[/QUOTE]