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Article: Dr. Peterson Update
- Thread starter Phoenix Rising Team
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I just spoke with Hemispherx. Please note that this information is completely preliminary, but the clinical trial team told me they're trying to extend its compassionate care program so more patients can have access to the drug for longer period of time at no-cost or low-cost (not sure). Of course, this isn't the first time such promises have been made (if you look at the checkered history of the drug), but I hope this time will be different. If anything, today gives me the perfect alibi to go out on a limb and say "this time things will be different." Realistically, looking at their financial statements, I'm not sure how they can do a compassionate care program unless they have XMRV-related grants coming in and are being assured the results of their phase III study will be better-received by the FDA this time around.
From our conversation, it does sound like certain established CFS physicians will be involved in the upcoming renewed phase III clinical trial, but the open-label study where you will be sure to get the drug at cost is also going to stay open. I certainly can't afford to take the drug at cost forever as my treatment in Columbus really dried out our funds, but my sincere hope is that the landscape for CFS treatment will be dramatically different by next year.
From our conversation, it does sound like certain established CFS physicians will be involved in the upcoming renewed phase III clinical trial, but the open-label study where you will be sure to get the drug at cost is also going to stay open. I certainly can't afford to take the drug at cost forever as my treatment in Columbus really dried out our funds, but my sincere hope is that the landscape for CFS treatment will be dramatically different by next year.
Super report, Joey. Thanks for being so diligent with the notes and details of your meeting! On the heels of the videos I just saw of the WPI grand opening, I'm really encouraged.
I would also agree with you about the diagnostic capability of these three Doctors- Dr. De Meirleir, Dr. Peterson, and Dr. Lapp. They have been doing this so long, they really don't need dozens of tests and workups to see if you are a candidate or not of Ampligen. With or without an XMRV panel, these guys having been in the game for 20 years or more, and after hundreds of patients, can just tell.
A few more comments about AMPLIGEN from my research and experience:
1. Ampligen works. Dr. Peterson's consideration of the age of the patient is something very few talk about, and I am elated he did with you. To me, stem-cell therapy in Panama would be the last resort for a young man like you- and only AFTER you'd given Ampligen a good shot. I say this only because of my own research- I have personally communicated with almost a dozen patients who have been or are on Ampligen now, and just like you said, none has died, none got worse, and almost all got better. Yes, there are a few who have had to go back and get "boosters", like our dear friend Mary Schweitzer, but I know three of the original 1991 group of patients who have lived almost 2 decades of "normal" lives after their treatment on that first "trial"- an have needed no boosters.
2. Ampligen starts working fast. I was on Valcyte for 6 months and never felt like it was working. The first time Ampligen entered my veins, I knew it was the real deal for me. I got hunger pains within 10 minutes. I remembered Spanish words I had long since forgotten. That night I slept and dreamed like a baby in REM- something I hadn't done in years. Over the next months of Ampligen, yes, the side effects hit you- you feel like you have the flu, there are muscle aches etc. as the Rnase levels rise and fall, and the cytokines race. But your family and friends will say, "even though you are feeling sick, you seem more cogent, more lucid!"
3. Ampligen is expensive, but you can go back to work. When I decided to fly half way around the world and start Ampligen 7 months ago, and essentially spend my retirement savings for this drug, the money was never the issue for me- because I knew that if I got better, I could make the money back. So many who have been treated with Ampligen have gone back to regular, full time paying jobs. Just this week at our clinic we will say goodbye to a woman from Europe who has finished her year here on Ampligen. When she arrived, she could barely walk they tell me. Today she does 12 hour days, including 1 hour of exercise each day! She'll go back to Europe and likely work in the legal field. So in the final analysis, I had to monetize the remaining years of my life, and my equation/conclusions were these:
Question: Is it worth $30,000 and 1 year of my life to try the treatment that has the MOST reported success to date? Answer: Yes
Question: If I spend the $30K and 1 year of my life and get better, would it have been worth it?
Answer: Yes
Question: If I spend the $30K and 1 year of my life, and don't get better, would it have been worth it?
Answer: Yes- because it was the best option I had.
Thanks again, Joey. Please keep us posted on your next steps.
I would also agree with you about the diagnostic capability of these three Doctors- Dr. De Meirleir, Dr. Peterson, and Dr. Lapp. They have been doing this so long, they really don't need dozens of tests and workups to see if you are a candidate or not of Ampligen. With or without an XMRV panel, these guys having been in the game for 20 years or more, and after hundreds of patients, can just tell.
A few more comments about AMPLIGEN from my research and experience:
1. Ampligen works. Dr. Peterson's consideration of the age of the patient is something very few talk about, and I am elated he did with you. To me, stem-cell therapy in Panama would be the last resort for a young man like you- and only AFTER you'd given Ampligen a good shot. I say this only because of my own research- I have personally communicated with almost a dozen patients who have been or are on Ampligen now, and just like you said, none has died, none got worse, and almost all got better. Yes, there are a few who have had to go back and get "boosters", like our dear friend Mary Schweitzer, but I know three of the original 1991 group of patients who have lived almost 2 decades of "normal" lives after their treatment on that first "trial"- an have needed no boosters.
2. Ampligen starts working fast. I was on Valcyte for 6 months and never felt like it was working. The first time Ampligen entered my veins, I knew it was the real deal for me. I got hunger pains within 10 minutes. I remembered Spanish words I had long since forgotten. That night I slept and dreamed like a baby in REM- something I hadn't done in years. Over the next months of Ampligen, yes, the side effects hit you- you feel like you have the flu, there are muscle aches etc. as the Rnase levels rise and fall, and the cytokines race. But your family and friends will say, "even though you are feeling sick, you seem more cogent, more lucid!"
3. Ampligen is expensive, but you can go back to work. When I decided to fly half way around the world and start Ampligen 7 months ago, and essentially spend my retirement savings for this drug, the money was never the issue for me- because I knew that if I got better, I could make the money back. So many who have been treated with Ampligen have gone back to regular, full time paying jobs. Just this week at our clinic we will say goodbye to a woman from Europe who has finished her year here on Ampligen. When she arrived, she could barely walk they tell me. Today she does 12 hour days, including 1 hour of exercise each day! She'll go back to Europe and likely work in the legal field. So in the final analysis, I had to monetize the remaining years of my life, and my equation/conclusions were these:
Question: Is it worth $30,000 and 1 year of my life to try the treatment that has the MOST reported success to date? Answer: Yes
Question: If I spend the $30K and 1 year of my life and get better, would it have been worth it?
Answer: Yes
Question: If I spend the $30K and 1 year of my life, and don't get better, would it have been worth it?
Answer: Yes- because it was the best option I had.
Thanks again, Joey. Please keep us posted on your next steps.
Kelvin--
You are a goldmine of knowledge about Ampligen. I was curious if you could respond to the first person to comment here about South American company purchasing license to Ampligen. I assumed that meant the drug could be used in South America but would still cost the same (unless the gov't covered it like they do up in Canada). Do you know?
Your post should've been a blog in and of its own, but thank you for commenting. If I knew I would get better on ampligen, the cost would be no concern at all. It is encouraging to hear that multiple patients got better and didn't need boosters. It would, again, be interesting to know their XMRV status. Sept 7 for the Hemispherx presentation, I can't wait.
You are a goldmine of knowledge about Ampligen. I was curious if you could respond to the first person to comment here about South American company purchasing license to Ampligen. I assumed that meant the drug could be used in South America but would still cost the same (unless the gov't covered it like they do up in Canada). Do you know?
Your post should've been a blog in and of its own, but thank you for commenting. If I knew I would get better on ampligen, the cost would be no concern at all. It is encouraging to hear that multiple patients got better and didn't need boosters. It would, again, be interesting to know their XMRV status. Sept 7 for the Hemispherx presentation, I can't wait.
Not to throw a wet blanket on the ampligen enthusiasm, but I did 6 months of ampligen infusions and it made me worse. There were 3 other people that were taking the drug with me, and one- who was the most severely ill person I have ever known with cfs, wheel chair bound, literally falling asleep during her infusions- was improved, but had to stop the drug because of financial reasons. One guy was moderately ill, and it did nothing for him. Another woman was mildly ill, and I don't know if she improved. I remember reading about a patient with cfs who was made worse by ampligen, before I was treated, (which gave me pause, but desperation made me forge on) so I know I'm not the only one.
I'm thrilled that kelvin and others have improved on ampligen, and wish them the best, but it is not a panacea.
good luck with whatever treatment you follow.
JAH
p.s. I have not yet been tested for xmrv, but have many immune disorders and infections.
I'm thrilled that kelvin and others have improved on ampligen, and wish them the best, but it is not a panacea.
good luck with whatever treatment you follow.
JAH
p.s. I have not yet been tested for xmrv, but have many immune disorders and infections.
C
Yep, they just today have the new serology test available. No, they no longer have my specimen, but I will FedEx another in the morning.
www.BIOTOXIN.info is a website by Dr Shoemaker that tackles biotoxin illness the cause of most illness in USA. It is the most misdiagnosed illness there is now. Doctors who stumble across it treat the symptoms and not the cause. The shocking part is that the doctors who mis-diagnosed me...focusing on the symptoms are throwing the science in the garbage when I present my blood test results designed by shoemaker. TGF Beta-1 is why I am in a wheelchair and it wasn't because of cancer. I believe mold kills more people than any other illness (perhaps combined).
My daughter and I are classic acute viral onset patients. I'd be on Ampligen in a flash, if I could get it. It's only available from a couple of physicians, as I understand it, and you have to live close enough to get IV therapy twice a week. Has that changed since I last heard?
Hey sickofcfs,
Unfortunately that has not changed. Last I heard, Bateman's not accepting anymore patients for her trial so options are even more limited for the cost-recovery trial. However, Hemispherx and multiple doctors' research teams have told me there may be a phase III clinical trial by the end of the year, so I advise anyone interested in ampligen to contact hemispherx:
Unfortunately that has not changed. Last I heard, Bateman's not accepting anymore patients for her trial so options are even more limited for the cost-recovery trial. However, Hemispherx and multiple doctors' research teams have told me there may be a phase III clinical trial by the end of the year, so I advise anyone interested in ampligen to contact hemispherx:
Thanks, m0joey! I'll have to contact Hemispherix. I was counting on Ampligen being available by now, but the FDA didn't agree with me.
I had all of these also. NKC activity = 4, for instance.
Erik was approved for Ampligen by Dr. Peterson in 1998. He couldn't get into the funded study because he could stand up part of the time, and he couldn't afford to pay for it himself.
So he pursued a different course, and within 6 months sent photos of himself from the top of Mt. Whitney (14,500 feet, 6000 feet of elevation gain) to Dr. Peterson and various other doctors.
Twelve years later, people are finally starting to listen. Judy Mikovits apparently has been great, for instance.
But Joey, did Dr. Peterson talk to you at all about mold even now?
Dr. Cheney at least has (just three weeks ago) sent out a letter to all his patients that they should look for toxic mold in their homes and move out if they find it (since remediation might not be enough to provide relief).
Hopefully eventually he'll understand that they need to leave their contaminated stuff behind, and then they'll start making real progress on the other treatments they're trying.
At least the acknowledgment is a start though.
Best, Lisa
Thanks too Daffodil,
That would put me out of this particular picture. My NK Cell function as measured by perforin was low normal at 340 (250-750 range) and Elastase expression was low normal at 14 (range 0-150).
Different strokes eh!
Thanks again for the insight...
That would put me out of this particular picture. My NK Cell function as measured by perforin was low normal at 340 (250-750 range) and Elastase expression was low normal at 14 (range 0-150).
Different strokes eh!
Thanks again for the insight...