Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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What does Ampligen's effectiveness tell us in light of the latest research?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Jesse2233, May 1, 2017.

  1. Jesse2233

    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
     
    Last edited: May 1, 2017
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  2. Gingergrrl

    Gingergrrl Senior Member

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    @Jesse2233 My sense is that there is very little discussion about Ampligen because it really is not available in the U.S. even "off-label" so few people have actually tried it. With the other treatments that you mentioned, there is a chance to try it. I tried Valcyte (did not help me and did not tolerate it even at micro dose), I had great improvement from IVIG, and I hope to try Rituximab in June if all goes well.

    But no doctor or facility in the U.S. (that I am aware of) currently prescribes Ampligen so I never really researched it b/c I did not believe it was an option and I assume this is the same for others.

    Also, do you know if Ampligen would be relevant in autoimmunity vs. viral issues? I think this may be another reason why people are not pursuing it (if they believe their illness is autoimmune based).

    Hoping others will add to this and I am sure there are more reasons.
     
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  3. Jesse2233

    Jesse2233 Senior Member

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    This is something I've wondered about as well. It's traditionally thought of an antiviral because it boosts interferon levels, but perhaps it may have an autoimmune mechanism as well
     
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  4. Alvin2

    Alvin2 If humans were rational...

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    The latest research is not published yet (i don't mean this metaphorically speaking).
    Once Dr Davis determines the molecule causing the block and especially if we identify its source it should be very helpful in figuring out why a treatment works and may be the basis of developing better or cheaper treatments.
     
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  5. dreampop

    dreampop Senior Member

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    Ampligen has never been proven to be effective in CFS, which it was why it was never approved. The rest is just conspiracy theories. I've looked at all the studies on it and it doesn't do much for CFS except move the needle on NK cell function, which 100 drugs can do. I'd forget about Ampligen and start looking forward.
     
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  6. IreneF

    IreneF Senior Member

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    What are those 100 drugs that improve NK cell function, and how come we aren't getting them?
     
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  7. Jesse2233

    Jesse2233 Senior Member

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    Ampligen's come closer than any other drug to FDA approval. I don't think we can really say any drug has been proven (perhaps pending RituxME Phase 3). And I don't think one can ignore Ampligen's compelling anecdotal accounts or its continued use by the field's leading doctors
     
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  8. Groggy Doggy

    Groggy Doggy Senior Member

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    What helps one person may not help someone else. It's difficult to prove a drug works without a bio marker. The key is to find out what treatments work for you. You may need multiple treatments and may need to follow a sequential order. No one said the road to recovery is easy. It's trial and error, mostly.
     
    Last edited: May 2, 2017
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  9. jpcv

    jpcv Senior Member

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    I disagree, many patients have used and many have benefited from the drug.
    it does have imunomodulatory effects, I reckon it works more as a imunossupressive drug than an antiviral drug.
    Thye infusion schedule is troublesome, but I wouldn´t mind going to a infusion center every 2 weeks if it works.
     
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  10. jpcv

    jpcv Senior Member

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  11. jpcv

    jpcv Senior Member

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  12. Gingergrrl

    Gingergrrl Senior Member

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    If you have any way to find this out, I would be very curious what you learn!
     
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  13. justy

    justy Donate Advocate Demonstrate

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    I cant remember where I read it or exactly what they said, but I believe it was going to be allowed to be made available in The Netherlands - I meant to ask KDM about it but forgot.
     
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  14. justy

    justy Donate Advocate Demonstrate

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  15. LaurelW

    LaurelW Senior Member

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    Yes, except for the many people, including myself, whose life it completely changed. I agree that good studies are not there yet, but this drug is the difference between being bedbound and being able to have a life for some of us.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    @LaurelW Is there another thread where you shared what symptoms you had pre and post Ampligen? Thanks for any info!
     
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  17. Jesse2233

    Jesse2233 Senior Member

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    Seen your posts @LaurelW, you were one of the many people I had in mind when I wrote this thread.

    How long have you been on Ampligen, and what's the improvement been like?
     
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  18. Jeremy C.

    Jeremy C.

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    Thanks for opening up this discussion @Jesse2233. Given that Ampligen essentially put me into remission while I was on it, I often wonder this. And given that it is such an expensive and difficult-to-obtain drug, I often wonder if there are other drugs that might have similar effect, but that is so difficult to even speculate when so little seems to be known about or is discussed about Ampligen (or Rintatolimod) itself.

    Unlike other treatments, you never hear that Ampligen works a bit for someone or makes someone a small percentage better. It seems to be either everything or nothing.

    I believe that perhaps one of the reasons there is so little discussion about Ampligen on Phoenix Rising is because the people it has worked for simply don't go on here, because they're getting on with their lives. I certainly would not be here had I stayed on Ampligen 12 years ago. But I don't understand why researchers aren't more interested.

    Really get sick of all the ill-informed sceptics on Phoenix Rising as well. I feel like if pwME had seen what Ampligen can do they would be trying to access it to see if it works for them.
     
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  19. Jeremy C.

    Jeremy C.

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    Exactly.
     
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  20. Jeremy C.

    Jeremy C.

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    Bioclones, the company that conducted the trial I was on, always told me that Ampligen was an immune modulator and indicated that it would downgrade the immune system if there was autoimmunity.
     
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