Jesse2233
Senior Member
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I'm often surprised there's not more discussion on Ampligen's historical effectivess in light of new research on autoimmunity, microbiome, and hypometabolism.
I understand that Ampligen is
1. Expensive
2. Tied to specific locations
3. Not currently available to new patients
4. Stymied by red tape and poor management
5. Likely needed forever
6. Infused twice a week
7. Most effective on the sudden onset viral subset
8. Prone to unpleasant initial side effects
But besides Rituximab, Valcyte, and IVIG, Ampligen seems to be the only drug that's consistently produced remissions for a subset of patients in both studies and anecdotal accounts.
In fact I can't think of an anecdotal account that I've read (whether on PR, HR, PH, Reddit, or blogs) where the results weren't life changing. The one exception I've seen are stories where allergic reactions during infusions forced people to stop prematurely.
Dr Bateman told me that she's never seen a drug have such a profound effect on a certain subset, and it seems to be Dr Peterson's and Dr Lapp's gold standard treatment. Drs Enlander, Klimas, and De Meirleir have all spoken favorably of it as well (though they no longer use it due to issues with Hemispherx).
Some will likely bring up studies that showed negligle improvement on VO max at the end of treatment. Dr Chia mentioned this to me. I wonder however, if those studies' endpoints came too soon, since many respondents report improvements to physical stamina at the 18-24 month mark (with neurological, sleep, and digestive improvements coming earlier). This progression of symptom improvement would seem to square with the progression of other recovery stories.
Furthermore it's the only drug I know of indicated for use in the severely ill (bedridden).
I could be missing something, and that's why I'm genuinely curious. Why does this drug tend to get ignored in theoretical discussions?
There must be a reason Bob Miller went on a hunger strike for it, and that patients uproot their entire lives and move across the world to access it. And that demonstrated effectiveness can likely tell us something about the etiology of the disease
I understand that Ampligen is
1. Expensive
2. Tied to specific locations
3. Not currently available to new patients
4. Stymied by red tape and poor management
5. Likely needed forever
6. Infused twice a week
7. Most effective on the sudden onset viral subset
8. Prone to unpleasant initial side effects
But besides Rituximab, Valcyte, and IVIG, Ampligen seems to be the only drug that's consistently produced remissions for a subset of patients in both studies and anecdotal accounts.
In fact I can't think of an anecdotal account that I've read (whether on PR, HR, PH, Reddit, or blogs) where the results weren't life changing. The one exception I've seen are stories where allergic reactions during infusions forced people to stop prematurely.
Dr Bateman told me that she's never seen a drug have such a profound effect on a certain subset, and it seems to be Dr Peterson's and Dr Lapp's gold standard treatment. Drs Enlander, Klimas, and De Meirleir have all spoken favorably of it as well (though they no longer use it due to issues with Hemispherx).
Some will likely bring up studies that showed negligle improvement on VO max at the end of treatment. Dr Chia mentioned this to me. I wonder however, if those studies' endpoints came too soon, since many respondents report improvements to physical stamina at the 18-24 month mark (with neurological, sleep, and digestive improvements coming earlier). This progression of symptom improvement would seem to square with the progression of other recovery stories.
Furthermore it's the only drug I know of indicated for use in the severely ill (bedridden).
I could be missing something, and that's why I'm genuinely curious. Why does this drug tend to get ignored in theoretical discussions?
There must be a reason Bob Miller went on a hunger strike for it, and that patients uproot their entire lives and move across the world to access it. And that demonstrated effectiveness can likely tell us something about the etiology of the disease
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