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Mary Schweitzer, Ph.D.

Mary Schweitzer, Ph.D.
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  • Hemispherx Biopharma: A Voice Of Reason Amid The Din [View article]
    I was too sick for the double-blind, which the company pays for (the Ampligen 516). I have been on a cost-recovery, open-label study (the 511), and you pay for everything yourself. That has been one of the problems - the company cannot afford to use these biomarkers in a double-blind. They have only used questionnaires and a simple treadmill test. The results from 1991, when they used mainly cluster outbreak patients (a more homogeneous group) were better, but CDC's insistence that the disease was only white women trying to have it all, surely put FDA in a difficult position. They told the company to run more tsts for toxicity, and the drug disappeared completely in the US for years. I am honestly terrified of the same thing happening again when we need to be moving forward. And I do not want to disappear into pain and serious invalidism again.
    Dec 5, 2012. 03:14 PM | 1 Like Like |Link to Comment
  • Hemispherx Biopharma: A Voice Of Reason Amid The Din [View article]
    I have been on Ampligen for all but three years since Feb 1999. Without it, I am an invalid in pain, unable to walk without holding on to walls and furniture, unable to walk away from home at all, unable to read, unable to drive a car - so much that the rest of you take for granted. I had blackouts and absentee seizures. I could not brush my own teeth and did not know what to do with a seatbelt, so my daughter would have to buckle me in.

    When I began Ampligen I was a Karnovsky scale 30 (where 0 is dead and 100 is perfect). I had been in studies, so we knew I had HHV-6 Variant A, discovered among AIDS patients, and the 37kDa Rnase-L defect. After six months on Ampligen, HHV-6A was dormant and the Rnase-L defect gone. It took longer, but eventually I was able to do all those things, even dance with my son at his wedding.

    Unfortunately, I was sick too long before getting any relief. I thought I was cured after 20 months, so I went off it - but one year later, HHV-6A returned with a vengeance. I blacked out at Cal Ripken's last baseball game, and had to be taken out of the stadium in a wheelchair. I was retested, and indeed the virus was back. It took 7 months to get back on Ampligen, but I did - and the family decided to use my long-term disability check for me to stay in the drug indefinitely. We could live on my husband's salary. So I was lucky.

    I stayed on it over five years. No bad side effects. Then, in 2008, when I had gotten so well that I had written a 650-page book manuscript and was walking 30 minutes a day, the head of my practice in Philadelphia died. FDA took away the drug. No one else on the east coast still had it.

    I thought I had a year, but I only had 7 months. The crash started September 2008, with active EBV (which I had continual problems with in the past). I went to see Dr. Dan Peterson in Nevada, and he found I also had CMV. My SPECT scans and VO2 MAX scores were abnormal. I had an abnormal cytokine pattern.

    I tried an antiviral that has been used against CMV and HHV-6, but my liver rejected it. It became clear that I had to get back on Ampligen, but how? You have to have twice weekly injections. I live in Delaware. The was no place nearby.

    By summer 2009 my condition had deteriorated badly. We did a spinal tap, and found HHV-6, CMV, and the Rnase-L defect in my spinal fluid. Dr. Peterson and my husband agreed - I had to get back on Ampligen. But with my balance so bad (I get severe ataxia), I fell in a motel room and had to have a back operation before I could get back on it. So it took until March 2010.

    I went back on Ampligen at Lake Tahoe - a lovely place - but I was 3500 miles away from my home and husband of 36 years. Friends at the clinic and the two local cab drivers helped me out. Eventually I could walk again, and in August Bob shipped my car out to me.

    In the spring of 2011 I badly wanted to go home again, and I learned that Dr. Enlander would be offering Ampligen in NYC. So I drove back from Nevada. It took until October, but I was back on it and have been back on it ever since. I have to commute the 100 miles to NYC twice a week - mainly 3 hours on the train. But I can't be off it.

    Unless FDA takes it away again. Then I will lose all I have regained, and return to being an invalid again, in chronic pain and confusion. God I hope that doesn't happen. I can do nothing about it. I am helpless. I'm just a patient.
    Dec 5, 2012. 01:50 AM | 1 Like Like |Link to Comment
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