This is an important open letter from the very first patient taking Ampligen
The incorrect folklore around my experience with Ampligen is frustrating. I have tried to keep a low profile but I will explain to you why I am now speaking out. I am trying to clear things up -- and hopefully still keep that low profile. I have been told numerous times about the exaggerations by Hemispherx and some of the P.I.’s (principal investigators) regarding my “successful recovery” and I chose to ignore them and spend my time getting well -- not getting even. However, if someone calls me and asks me a direct question concerning the drug -- they will get an honest and direct answer. That is my style. I am really concerned about the false impression they are giving about my five years on Ampligen. It incorrectly influences people who are considering hocking their life’s savings and their health by what they are told about me and what Ampligen is capable of accomplishing. After 5 years on the drug (400 mgs 3xs a week) and a lot of side effects -- plus not getting well -- no one should know better than I do -- what this drug can and can’t do.
The last straw was when a friend of mine sent me a copy of the U.S. patent (number 5,958,718) which was filed by Hemispherx and granted by the U.S. Patent Office. In their application Hemispherx claimed patient 00 (me) was a professional golfer and was now “leading a normal life fully self-sufficient.” Seeing as I had an 18 handicap back many years ago when I was able to play golf (not bad for a sweet little old lady), I would hardly qualify for professional golfer status. Professional golfer’s handicaps are 0 -- thus no handicap is used when they play in tournaments. Not to mention they play for money. As far as "leading a normal life and am self-sufficient" -- I should be so lucky. Ask my husband, who cares for me (even though he has Parkinson’s Disease), how correct that statement is. Those are bold face lies and it bothers me. We are seriously considering going to our lawyer ( who is a very good one, I may add ) and ask him to write a letter to the FDA and the U.S. Patent Office telling them the truth. I doubt if we would sue at this point — just inform both agencies...but if I hear any more of that sort of thing -- they had best watch out!! Lying to the government is not one of my strong points. U.S. Senator Pete Domenici (R-N.M.) was very instrumental originally — in 1988 — helping me to obtain Ampligen on a compassionate care basis. He is a very powerful senator and one of those rare politicians who is extremely honest and keeps a very personal relationship with his constituents. In fact, I may go to him with this issue. I respect his honesty and excellent reputation so he deserves the truth and so does the FDA and Patent Office.
Now -- let’s see if I can answer your questions. Does Hemispherx, FDA, Dr. Peterson, or Dr. Levine, etc. --- have my correct address ---- yes, absolutely --- and the same for most of the others. In fact, Dr. Peterson wrote to me several years ago and offered me the opportunity to go back on the drug. My answer was a resounding and emphatic ---- NO!! To be honest with you -- if I had it to do over again, I would not go on it the first time around knowing what I do today. I was astounded when I reported the heart problems to the doctor who was my principal investigator -- and his answer was “Ampligen couldn’t have caused that” and that was it. How would he know, and shouldn’t it have been reported anyway?
At this point NO ONE in the original study with whom I am acquainted -- or those in the following double blind placebo study — is well. (The double blind placebo study is jokingly called the "double cross" placebo study as Hem did not keep their word.) I was on the drug the longest. NOT ONE, including myself, of the participants I know (and I exchange info on a regular basis with MANY OF THE ORIGINAL RECIPIENTS) has been contacted in ANY way by Hem or the FDA, etc. Scary, isn’t it? I know one of the first 10 Ampligen patients has Mantle Cell Lymphoma, and a second person who was one of the original 15 has stage 4 cancer. Another of the first 10 has found a lump in her breast and is seeing an oncologist next week. Two of the first 10 have committed suicide. I had a hemangioma tumor removed from my liver in November, plus all the heart complications. Nothing has been documented. Seeing as many of us were on the drug 4 or 5 years -- I find this disinterest amazingly careless, or maybe they don’t want to know or admit to developing problems. Who knows -- but is this how all drugs are approved??? I hope not.
You would think that would be of interest to the FDA seeing as we were all on Ampligen for years. It seems logical we would be of great interest to those people responsible for both the safety and efficacy of this drug, such as Dr. Levine. As far as the arrhythmias and mitral valve prolapse --- no, I did not have either before I took Ampligen. They were diagnosed by the Johns Hopkins cardiologists, after I was off Ampligen, who found I also had NMH. I was treated by a cardiologist (electrophysiologist) in Albuquerque for all those complications. We have the arrhythmias calmed down now, but it took several years. You asked about intolerance for alcohol -- yes, I have always been intolerant. My husband kiddingly use to called me a “cheap date” because I never ordered an alcoholic drink while we were dating. With all my medical bills now, I don’t fit in the category of a cheap date anymore.
You are welcome to share this information with anyone. It is the simple truth, and I think that truth is needed in this vast web of inappropriate information regarding Ampligen.
From the CFS BULLETIN
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