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Which is what Ampligen apparently is. All of us would have within 6 or 7 hours of the infusion or infusion days, we get really exhausted, run low-grade fevers, sore throats, headaches, just more of that all over body pain. And the flu type pain that a lot of us have all the time. But much more an increase in all of those symptoms. Usually we would be sick the night we were infused. Feel really lousy the day after. A little less lousy the day after that. And then just as we were starting to feel human again it would be time for another IV. I was in touch with other people by e-mail and we could compare notes on you know, is this happening to you. I was in touch with 7 other people who were taking Ampligen at the same time I was. Different people had different problems but those were the most common. Pain was already in my profile so I would have increased pain. I had a lot worse night-sweats. From what I heard from the other people, everyone had those in the beginning when they first started getting infusions.
WOULD YOU SAY THAT IT (AMPLIGEN) EXACERBATED THE BASIC SYMPTOMS THAT YOU ALREADY HAD? Yes it did for me, definately. Something in the back of my mind was maybe that meant it was doing it's job. It's definately not a placebo it's definately a real drug and I kept reasoning to myself. The others with me kept doing this. We used to feel like well, if we were miserable ya know, people who are getting chemotherapy get really sick too. Maybe that's what you need to do to get better. And as long as we could sort of stick it out for the amount of time we were supposed to do it that maybe it would pay off. And maybe we would feel better afterwards. I had also heard from Belgium that patients there didn't start to feel better until they had been off of the drug for a month or two. So I still came home hopeful that I would maybe start to feel better.
DO YOU THINK THAT IT (AMPLIGEN) HELPED YOU? Unless something happens still yet in the future, it definately didn't help me. I'm still dealing with increased side effects. I'm now sicker than I was before I went on it. Other have told me that they are also not nearly as well as before I went on it. Others have felt sicker when they went off it. There is no literature so I don't know how to determine if this is a norml thing. I thought that only meant, I mean I've read before that people sometimes relapse when they go off the drug but I thought that was the people who had gotten better, who were on it and then went off it and then went back to how they were before. I did not actually realize that you could end up sicker than you were when you started. Even if you hadn't improved in between. I'm not doing so great.
DID YOU HAVE THE OPTION TO STAY THERE (IN CANADA) IF YOU WANTED TO? I asked the pharmaceutical company to please have their medical director let me know if there was any reason to stay off the drug past 24 weeks, given that I hadn't had any improvement after 24 weeks. Because in Brussels now they are saying people should be on it for 40 weeks and I said look, if you can give me any reason to think I might improve in months 7 or 8 or 9, I'll stay. I'm here right now. They called me back and told me they reviewed my file and basically, considering that I was having increased pain and had no benefit in the 24 weeks that there was no reason for me to stay on. They had no expectations that I would improve. So I didn't stay on.
DO YOU FEEL THAT, THAT WAS LEGIT? Yes, I do. And obviously it was really hard to be up there away from everything and spending all that money. But I would have stayed if I was told there was a chance I could get better. Once I found that the dosage infusion thing was messed up, in a way, part of me thinks I have to go back and do it again in 6 months, the right way to know for sure that it couldn't help me.
AFTER ALL THIS, WOULD YOU RECOMMENT IT? I think it's obviously still a very personal decision. Ya know everybody's personality is different no matter how sick they are. Some of us were always the type of people who felt we needed to be doing something for ourselves. If you have tried everything, there's nothing else to try, you just need to know you're trying something that might work. Overall, I think the people would be much better off waiting until some of the kinks are ironed out of this protocol, this drug, this company, everything before they went on it. We were told that if we went on it in Canada we would be able to come home and transfer to our own doctors, without having to be added to the number that the FDA approved. It turns out that wasn't true. I don't think they were lying, they just didn't know. The problem is a lack of data. I know of only one person who went back to work. . I think Ampligen may be helpful in a subset of patients.
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