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The following interview is with Danya Zucker. Danya is an American from Oregon who was one of the few people who recently went to Canada to obtain the drug Ampligen. Danya is a Harvard graduate who was in perfect health until she became sick when she was 25 years old. Her illness was of an abrupt onset. She has been sick for over 7 years and has tried tons of different treatments for CFS before her Ampligen protocol.
DO YOU BELIEVE AMPLIGEN HELPED YOUR CONDITION? It definately did not help my condition. I didn't have any improvement at any point.
DO YOU THINK IT WAS WORTH WHAT YOU HAD TO GO THROUGH? Well, if I could have found out everything I know now without having gone through the physical, emotional and financial expense of finding it out, I would say no. I know now that is doesn't work for me. I needed to know whether Ampligen could work for me so I had to do whatever it took to find out. So I don't regret doing that part. I've tried every other treatment, literally, and I had read some pretty impressive stuff and I needed to know if it might help me. Unfortunately, I did not get to come back home knowing for sure that it wouldn't help me because I found out 2 weeks before the end of my protocol that our infusions had been administered improperly. It had nothing to do with our doctor, but he had been given improper instructions. A corporate officer of HemisphRX told me that the way we had been infused, the drug was much less effective then the way other people had gotten it in other places. So I can't even say for sure that if I hadn't gotten infused properly for six months, it might not have helped me.
DO YOU THINK THAT HEMISPHERX WAS TRUTHFUL IN THEIR ENTIRE APPROACH? I don't think that anyone tried to lie unpurpose. I don't think there's any malice involved. They didn't purposely tell our doctor to do the wrong thing. They never checked up to see how we were being infused. They never came and watched our infusions for one day. So, by accident, 2 weeks before I was about to finish, one of the corporate officers said to me in a conversation, well it doesn't really matter if they infused saline with it or not, all that really matters is that you get the drug infused over a 35 minute period, plus or minus 5 minutes. He said it's a very delicate biologic, apparently, and it has a very short half-life. And he said that in order for it to work, optimum, you need a certain level of it in your body for a certain amount of time. He said the 35 minutes, plus or minus 5 minutes was how it was supposed to be administered. And I said all our infusions have ben over 60 minutes. And he said, are you sure about that, like how could that be. I said yeah, I'm absolutely sure about that. We had also been told that the side effects would be less bad if the infusions took longer. so of course we all opted for the longer infusions. Then he said to me actually the side effects are worse if you have a longer infusion. And he just sort of blew my mind.
DID YOU HAVE A LOT OF SIDE EFFECTS? I did. In fact when I didn't know whether what this deal was with infusion times I obviously called Phil (another Ampligen patient) first and he said that when he started his treatment before I was ever there and Dr. Carter had flown up there and some other people. He asked Dr. Carter right in front of my Canadian doctor, how long should the infusion be taken. He was told, don't rush it, let it go an hour. When I asked this Hem officer why they told him that, he said no, no, we stated it very clearly that it shoul go for over an hour for the first 3 IVs and then as soon as it's being tolerated it's got to be taken down to 35 minutes. It's not what Phil understood, and he's very intelligent and it's not what the doctor understood. So no, I don't think anybody meant to mess up but they obviously weren't concerned enough to check on it. There were plenty of conversations between them and our our doctor about other things. Plenty of conversations between me and them just trying to straighten out invoices and it seemed to me that nobody checked on the most important thing. I got in touch with people who were being infused in NC, CA, and Belgium and asked them about their infusion times. And they told me tht thye had, had the longer infusions for the first 3 times and then brought it down to 35 minutes cause that was the protocol. So that's obviously very discouraging.
WHAT WERE THE SIDE EFFECTS THAT YOU WERE EXPERIENCING? They said that what I had was pretty much the classic side effects for an interferon type drug.
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