1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
Discuss the article on the Forums.

Ampligen Experiences

Discussion in 'XMRV Testing, Treatment and Transmission' started by mojoey, Jul 28, 2011.

  1. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Dr. Klimas just announced that she signed up as a trial site. Here is her blog post on http://cfsknowledgecenter.ning.com/

     
  2. vli

    vli

    Messages:
    2,030
    Likes:
    2,144
    CA
    I can't log in becasue I'm not a member, I guess I'll sign up then. So what does this mean? Klimas will now start giving ampligen as a trial right?
    Doesn't this mean we'll soon get a LOT more testimonies of ampligen's effectiveness (ok maybe not soon, but in the very near future)???
     
  3. vli

    vli

    Messages:
    2,030
    Likes:
    2,144
    CA
    Hi joey, I know it's best to ask the man himself (I'm seeing him in 4 days in London) but I wanted to make sure you meant Enlander is already administering ampligen NOW. Do you know how long he's been giving it for? If Nielk comes across this, correct me if I'm wrong but I think you posted recently that Enlander HASN'T started giving ampligen yet.
     
  4. Nielk

    Nielk

    Messages:
    5,446
    Likes:
    5,873
    Queens, NY
    The last time I saw him, he hadn't started yet. He said that Hemispherx keeps postponing. I know that he has a list of patients signed up for it. If he didn't start it yet, it should be soon.
     
  5. vli

    vli

    Messages:
    2,030
    Likes:
    2,144
    CA
    OK, this is very curious to me (and I believe you Nielk) because from what mojoey said it SOUNDS like his friend is already getting ampligen fr Enlander!!
     
  6. Nielk

    Nielk

    Messages:
    5,446
    Likes:
    5,873
    Queens, NY
    It's possiblethat he started since I saw him. I didn't sign up for it so they wouldn't have called me if they have started.
    I am trying some other treatment right now and want to see it through if it's going to help. In addition, to be honest Ampligen is very very expensive and at best there is a 30% chance that it will work on any individual.
     
  7. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Hi NielK,

    May I asked where you got that "30%" figure from? Was it from Dr. Lapp's "one-third" statement?

    Here is what he published in his HHC Newsletter: http://www.drlapp.net/meLetterMar2011.htm
    That doesn't mean two-thirds did not improve at all.

    So based on the retrospective analysis, out of 208 subjects there was a 40% chance of improvement with a 45% chance if xmrv-positive.
     
  8. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Although the drug is certainly expensive, not all patients will be on the full dose. Some may end up only tolerating the half dose which is $7200 in drug costs, which puts it in the same ballpark as gcmaf.

    Another quote from the HHC newsletter touches on this:

    I would love to see these actuarial studies myself, but if the pool used to determine this was all patients that have tried amp, that would certainly make for an interesting debate of how expensive the drug really is compared to not doing anything at all.

    Here, I did my own cost-benefit analysis of ampligen at full-dose, half-dose, and half-dose with full insurance coverage for administrative costs. I highlighted the latter in yellow. At least based on this little exercise, the net present value of the investment over a 5-yr period is actually positive, which would argue that it's a worthwhile investment if those probabilities apply to you. https://docs.google.com/spreadsheet...DNwa1JDU3hfYUx6dXUwbXJFQmtFV1E&hl=en_US#gid=0

    The potential benefits and the probabilities I applied are:

    Intangible benefit of feeling better but not good enough to work - 20%
    Intangible benefit of feeling better plus tangible benefit of being able to work while retaining social security disability benefits - 10%
    Intangible benefit of feeling better plus tangible benefit of being able to work full time (post-tax) - 10%

    So even if we use these very low odds of success, it still might be a worthwhile investment from this perspective.
     
  9. Nielk

    Nielk

    Messages:
    5,446
    Likes:
    5,873
    Queens, NY
    Hi mojoe,

    I wasn't implying that others shouldn't try this treatment. It is obvious that for some patients it is magical. It is also true (I think) that at this time, Ampligen is the only drug that can achieve a complete reversal of symptoms. Meaning, the patient will feel 100% well. Some relapse after being off it for a while but, when they get back on it, it will work again.
    Some patients will have no effect and more importantly (not to be ignored), there are patients that have an adverse effect and it causes their condition to deteriorate.
    As far as the percentages, I actually heard it from a Peterson patient who was part of a study and is doing very well on it.
    By saying 30%, I thought I was being generous because Hemispherex has been known to artificially boost up their success rate in order to try to get FDA approval. They were cited for it and caused a lot of stockholders to be very angry. That is also the reason that the FDA has not approved the drug yet. This is very unusual for a drug that has been around for so long.
    I heard too, that xmrv+ patients have a better chance of improving. I think that this time around, Hemispherx is going to be more restrictive as to the patient cohorts that they will be supplying the drug to. This well hopefully cause better results and hopefully be accepted by the FDA.
    Are you sure that Hemisphex will agree with half dosages? If that's true and the administrative costs are covered by insurance, I agree with you that the cost/benefit ratio is worthwhile.
     
  10. LaurelW

    LaurelW Senior Member

    Messages:
    552
    Likes:
    92
    Utah
    I hate to burst your bubble, but Ampligen rarely achieves a 100% reversal of symptoms. Even people who do very well on it usually still have some degree of PEM and have to be careful not to overdo it.

    I've heard that Dr. Peterson has said that the number of people that get at least some improvement on the drug is closer to 70%. That was posted somewhere here on PR--when I have more time I'll look for it. It sure would be nice to get a definitive figure, wouldn't it?

    I've never heard that Hemispherx making the FDA angry for their lousy business practices is what caused them to reject their new drug application. The FDA has specific reasons in their rejection and they were all protocol-related. If I remember correctly from the new drug application, it was that they hadn't shown enough efficacy. In order to get reconsidered, they have to do that, test the drug at several different doses to find out which one is the best one, and clean up their manufacturing quality control.

    Of course, I'm not denying that the FDA can be influenced by politics! ;)

    I don't believe Hemispherx is being more restrictive about who gets the drug. Basically, they will take anyone who can pay and who doesn't have certain co-morbid conditions and can get off the drugs that are counter-indicated by the study.

    If you have any more info to back up some of the claims you've made, I'd really like to see it. There is so little in the way of hard facts known about this drug (by anyone other than Hemispherx, who isn't talking) that it must be really difficult for someone to decide whether to put out the large amount of money needed to get the drug.
     
  11. Nielk

    Nielk

    Messages:
    5,446
    Likes:
    5,873
    Queens, NY
    See below under controversy the inflated numbers.
    http://en.wikipedia.org/wiki/Ampligen#Controversy

    Laurel,

    Am I mistaken that you have been helped a lot by Ampligen?
     
  12. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Hey LaurelW,

    Peterson also told me that it helps 70% of people that try it. Since Peterson is so careful about whom he puts on the drug, so I would think his percentage is closer to what the results would be for a well-defined cohort.
     
  13. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    The controversy behind doctor- and company-reported numbers is why we need to get more ampligen patients reporting on the spreadsheet i provided. So far only 6 patients have replied.
     
  14. LaurelW

    LaurelW Senior Member

    Messages:
    552
    Likes:
    92
    Utah
    That's a really good point, Joey--the success rate could vary greatly according to what each provider uses for criteria.
     
  15. LaurelW

    LaurelW Senior Member

    Messages:
    552
    Likes:
    92
    Utah
    Thanks for the link, Nielk. I'm not denying that Hemispherx has engaged in some pretty dicey practices. But most of that stuff was a long time ago.

    It's true I was helped greatly by the drug, but never got better than about 80% of my previous life. (Which is pretty darn good if you're bedbound and hurting).

    I wish more than anyone that the FDA would approve the drug, because it can help. But it's not a cure, and I'm really hoping that the research will find something that will help all of us, not just some of us, and be more effective, with less side effects, and most of all, is affordable.
     
  16. acer2000

    acer2000 Senior Member

    Messages:
    602
    Likes:
    253
    I was under the impression that people who responded fully felt about 70% better, not that 70% of the people responded. But I haven't been able to get a clear answer on this. And the main studies done with Ampligen in the last 80s/early 90s show pretty small improvements on exercise testing. However, that might not tell the whole story, and the distribution of who improves and how much they do in the real world may be different.
     
  17. Daffodil

    Daffodil Senior Member

    Messages:
    2,921
    Likes:
    895
    ive talked to several ampligen patients over the years....i have to say, most of them report good results. i have even heard of european patients who had been sick long-term but took the drug for 3-4 years...and they lived normal lives afterwards for many many years before relapsing (then they needed to be re-treated). i dont know if they had 100% recovery, but it sounded like it was pretty close.

    i think the problem with many is that they cannot afford the drug for long enough.

    i have even heard of a few rare cases where people have not relapsed at all, after stopping the drug!
     
  18. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    950
    Likes:
    91
    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
     
  19. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    472
    Likes:
    309
    Western PA USA
    Just when I thought all I needed to do was, visit Canada to get Ampligen:bang-head:
     
  20. Kati

    Kati Patient in training

    Messages:
    2,110
    Likes:
    1,732
    Sorry? The stigma is too high here to even mention ME, let alone to have access to ampligen.
     

See more popular forum discussions.

Share This Page