Ampligen Experiences

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mojoey said:
There is a form for interested docs to get the application process rolling. I will try to get permission to distribute this form, and if i do i'll PDF it.
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Did you ever receive permission to distribute it? If so, may I please have it?
 
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Daffodil said:
its been available in canada since May, 1996 on a cost-recovery basis (meaning you have to pay for the drug). i believe you doctor has to fill out some paperwork..it's probably available through some special access program. i dont think you can say its "on the market".

i have heard of only 1 patient receiving it - an HIV patient from NYC, who travelled to see Dr. Guy Dore in Montreal (i emailed this doctor once and got the impression he no longer uses it)

in all these years, I have not been able to find any doctor who will prescribe it for me...and i have seen many.

your best bet may be to call hemispherex and see if they can provide you with a name of someone in canada who may be prescribing it. if you do find someone, please let me know!

thanks
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Hello, Daffodil (@Daffodil). Do you know whether anyone else has managed to receive Ampligen in Canada, whether on a cost-recovery basis or otherwise, since you made this post? Likewise, if you happen to have any insight into applying for expanded-access/compassionate-use Ampligen or into how someone might receive it in Argentina (the one country in which it is approved for use outside research and expanded-access/compassionate-use settings), I would be most grateful if you shared it with me.
 
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aquariusgirl said:
Hi all

I just spoke with Nancy McGrory, the patient liaison at Hemispherix & she said she is actively looking for physicians to run these self pay trials in addition to the ones who have already signed up.

If anyone in or around Chicago is interested in paying for Ampligen txtment &/or knows a physician who might be willing to offer it, pls PM me.

Thanks
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Hello, aquariusgirl (@aquariusgirl). Did you ever receive a response or learn of some other opportunity to receive Ampligen?

Likewise, if you happen to have any insight into applying for expanded-access/compassionate-use Ampligen or into how someone might receive it in Argentina (the one country in which it is approved for use outside research and expanded-access/compassionate-use settings), I would be most grateful if you shared it with me.
 
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HenryBSilver said:
Hello, Daffodil (@Daffodil). Do you know whether anyone else has managed to receive Ampligen in Canada, whether on a cost-recovery basis or otherwise, since you made this post? Likewise, if you happen to have any insight into applying for expanded-access/compassionate-use Ampligen or into how someone might receive it in Argentina (the one country in which it is approved for use outside research and expanded-access/compassionate-use settings), I would be most grateful if you shared it with me.
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Hi Henry. I have not looked into Ampligen for many years but I just did some googling. It appears that there is a cost recovery open label trial in Incline Village right now, with Dr. Lapp.

https://classic.clinicaltrials.gov/ct2/show/NCT00215813
 
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Daffodil said:
Hi Henry. I have not looked into Ampligen for many years but I just did some googling. It appears that there is a cost recovery open label trial in Incline Village right now, with Dr. Lapp.

https://classic.clinicaltrials.gov/ct2/show/NCT00215813
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I've asked those clinics many times to allow me to join that open-label study, but Dr. Peterson suddenly stopped responding to me at the end of April, and Dr. Lapp emailed me a few weeks ago that AIM ImmunoTech is not accepting new patients into the study anyway – at any rate, was not accepting them when he wrote the message.
 
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Hi @mojoey.....we don't know each other, but I'm wondering if Martin has tried Ampligen.? Apart from someone like you, he would be the one. How is he these days anyway? Yours, Lenora
 
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Daffodil said:
@HenryBSilver have you tried contacting Mary Schweitzer? Dr. Enlander perhaps?
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@Daffodil:

Yes, I've contacted AIM ImmunoTech countless times about receiving Ampligen through some kind of expanded-access/compassionate-use arrangement in the United States or by whatever means may be available outside the United States, to well-nigh no avail whatsoever. Usually they just ignore my inquiries.

I haven't managed to confirm it yet, but the evidence I've found online suggests @denlander has retired to South Florida, but I've also read some hints that he might still be practicing medicine there in some form. I'm going to make some calls tomorrow to try to arrive at the truth.

Do you know how to contact him or Mary Schweitzer, by any chance?
 
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Daffodil

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HenryBSilver said:
@Daffodil:

Yes, I've contacted AIM ImmunoTech countless times about receiving Ampligen through some kind of expanded-access/compassionate-use arrangement in the United States or by whatever means may be available outside the United States, to well-nigh no avail whatsoever. Usually they just ignore my inquiries.

I haven't managed to confirm it yet, but the evidence I've found online suggests @denlander has retired to South Florida, but I've also read some hints that he might still be practicing medicine there in some form. I'm going to make some calls tomorrow to try to arrive at the truth.

Do you know how to contact him or Mary Schweitzer, by any chance?
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Hi Henry,

I communicated with Mary last in 2019, I believe. I just tried emailing her and will let you know if she responds.
 
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Well that was weird. Just googled Enlander and got an eyefull re: lawsuit from his housekeeper claiming he and his wife enslaved and sexually abused her. geez
 
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Daffodil said:
Hi Henry,

I communicated with Mary last in 2019, I believe. I just tried emailing her and will let you know if she responds.
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@Daffodil :

Thank you very, very much for contacting her on my behalf. As for Dr. Enlander (@denlander), I had already read some of those allegations against him and some of his defense, but I don't really want to know any more about it, and it doesn't in any way affect my desire for his medical input. Alas, it seems rather likely to me from what I've gathered on the Internet and on the Wayback Machine that he retired completely within the last year or so, but I haven't confirmed it yet and may never be able to do so.
 
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HenryBSilver said:
@Daffodil :

Thank you very, very much for contacting her on my behalf. As for Dr. Enlander (@denlander), I had already read some of those allegations against him and some of his defense, but I don't really want to know any more about it, and it doesn't in any way affect my desire for his medical input. Alas, it seems rather likely to me from what I've gathered on the Internet and on the Wayback Machine that he retired completely within the last year or so, but I haven't confirmed it yet and may never be able to do so.
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Hi Henry. My friend reminded me that he had already told me about Enlander and I just forgot lol. My brain is like a sieve thanks to the illness.

Mary just replied and she is getting Ampligen through Peterson. I asked if there was some way you could also get it and am waiting for her reply.

She said maybe Lapp's study is full but urged you to ask again
 
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Daffodil said:
Hi Henry. My friend reminded me that he had already told me about Enlander and I just forgot lol. My brain is like a sieve thanks to the illness.

Mary just replied and she is getting Ampligen through Peterson. I asked if there was some way you could also get it and am waiting for her reply.

She said maybe Lapp's study is full but urged you to ask again
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Hi Henry. Mary says there are not many people getting it at Petersons but I don't think he is taking patients. When she emails next, maybe I can ask if she can put in good work for you
 
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Daffodil said:
Hi Henry. Mary says there are not many people getting it at Petersons but I don't think he is taking patients. When she emails next, maybe I can ask if she can put in good work for you
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@Daffodil:

That would be marvelous. Thank you. As I tried to explain before, Dr. Peterson, in collaboration with my neurologist, was working fruitfully with me and seemed to be moving towards scheduling me an in-person appointment before the sudden and continuing communications blackout that began at the end of April.
 
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Judee said:
He also feels like Ampligen is the only treatment that would work for our disease so I was just flagging him to let him know what @Daffodil had said.
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@Judee:

I see. Thank you for that clarification. I can't speak for @Rvanson, but I should just note I'm not qualified to say it's the only treatment that would work, and therefore I've never said that and don't think it. It does, however, appear to me to be the best studied, most efficacious treatment yet used for ME/CFS. I may well be mistaken about that, though, in which case I'd welcome a detailed correction.
 
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