AMPLIGEN - Who would try it

Discussion in 'Fibromyalgia Main Forum' started by SpecialK82, Feb 5, 2009.

  1. SpecialK82

    SpecialK82 New Member

    Since Ampligen should be approved this year to treat CFS/ME, I'm wondering who would be, and who would not be interested in trying it?

    The trials took so long before submission to the FDA last year - does anyone know why? All the stops and starts concern me, were there problems with the drug itself or the claims that it makes? I can't find anyone that had significantly bad reactions through my research...

    I suppose if could afford it after FDA approval, I would try it out of desperation.

    Anybody else?

    Kristina

  2. ladybugmandy

    ladybugmandy Member

    good question! i am in canada so its a moot point, but ampligen will certainly change things for you guys in the US!

    once levine told me she didnt like ampligen because of toxicity concerns but that wouldn't stop me if i were desperate.

    i have heard that people who have been untreated for a long time require a very long time on the drug - similar, it seems, to antiviral therapy duration.

    sue:)
  3. SpecialK82

    SpecialK82 New Member

    Hey Sue

    I just read the Ampligen diaries of Mary Schweitzer on-line and it was heartbreaking. She has taken Ampligen for a test period of approx 20 months and had done very well on it. She improved significantly both cognitively and physically.

    She remained in remission for about a year after taking the drug and then had a terrible relapse. She was able to get herself back on the drug after months of waiting (and deteriorating) and she improved dramatically again.

    Unfortunately, after taking the drug for approx the next 6 years, the FDA approved test site that she was using was closed down and she could no longer get the drug. This time her relapse came only 6 months off the drug. She now has to re-adjust to her life as an invalid.

    I can't imagine the pain of finally getting some relief from this he## and then being thrust back into it!!

    However, it was great to read of her positive results!

    She said there are three markers that are expected to do well on Ampligen -
    37kDa Rnase-L, HHV-6A, or a low natural killer cell function.

    Kristina
    [This Message was Edited on 02/05/2009]
  4. SpecialK82

    SpecialK82 New Member

    good questions lonelyhearts -bump
  5. ladybugmandy

    ladybugmandy Member

    i have communicated via email with mary. she is really smart! the last i heard, she was only able to afford ampligen at a lower dose than she needs (if i recall correctly).

    i think the drug will be FDA approved soon so hopefully she can go back on her required dosage.

    sue:)
  6. SpecialK82

    SpecialK82 New Member

    I called Hemispherex (sp) and left a message asking if they had any idea when it would be approved - we'll see if they bother to call back. Maybe they can tell us a little more.

    If they call back, I'll ask them if (when) they will seek approval in Canada.

    Kristina :)
  7. ladybugmandy

    ladybugmandy Member

    kristina..thank you!

    ampligen is already approved in canada under emergency release but apparently, no one is getting it...? i dont know whats going on with that....

    i suspect no doctor is willing to order it, except one in montreal who is giving it to an american with AIDS i think....

    ampligen is supposed to be approved in the US by Feb. 25th i think...

    sue:)
  8. TeaBisqit

    TeaBisqit Member

    I've heard this so many times and gotten my hopes smashed to bits. They keep saying they will approve it and they never do.

    I had always wanted to try it. However, after eighteen years, I am no longer sure it will help me. I had a very strong feeling if I had been given the drug eighteen years ago, it would have helped. Now, I'm not so sure. And I think it's something you have to be on for the rest of your life or you relapse.

    I'd really have to think about trying this. It's still only in IV form. I'd rather have a pill.
  9. ulala

    ulala New Member

    Does anyone know how often a person has to take it? I hope it's not so often that a person who uses it has to have a PICC line ? Anybody know?
  10. mindblower

    mindblower New Member

    "...were there problems with the drug itself or the claims that it makes? I can't find anyone that had significantly bad reactions through my research..."

    Look harder. Check the archives of all the top ME/CFS/CFIDS sites, groups that've been around for years.

    I suspect the only reason it hasn't been absolutely gutted as a conversation let alone a suggested treatment by top ME/CFS org leaders are its political merits. However, I do suggest we as a community and as individuals with this diagnosis begin to move away from supporting and doing any treatment out of desperation.

    I much appreciate where such commentary comes from, but think it important to notice in life how often desperation is a symptom of a losing hand.

    Not always, but often.

    MB
    [This Message was Edited on 02/07/2009]
  11. aftermath

    aftermath New Member

    The financial sites are reporting that the decision will be made on or before 2/28.

    http://www.istockanalyst.com/article/viewarticle/articleid/2962420
  12. ladybugmandy

    ladybugmandy Member

    someone told me that dr. batemen thinks it will be approved for sure soon.

    i have heard people being helped even if they have had CFS for many, many years, but it just takes longer - i think they took it for approx. 4 years or so.

    ampligen is given twice a week i think, for an hour each time.

    it will be a while until they come up with an oral form; apparently, it is quite unstable.

    sue:)

    ps...if you would like to read a great article on ampligen's history:

    http://www.cfs-news.org/kitei.htm
    [This Message was Edited on 02/08/2009]
  13. SolSerenade

    SolSerenade New Member

    Sure, I'd try it in a heartbeat ... it's a bit out of my price-range at this time though.
  14. SpecialK82

    SpecialK82 New Member

    wow 2/28 that's a mere few weeks away - I'd love to see that happen!

    Sue and aftermath thanks for the links to the articles - the history of ampligen certainly reads like a soap opera.

    Although the evidence of improvement may not be as strong as we would like, I think it still is promising. If former trial participants were suing for continued access to the drug it seems that something must have been working - doesn't it??

    I''m not saying that I would try this immediately - but I'm very excited!

    Kristina
  15. mindblower

    mindblower New Member

    Hi, Kristina.

    I agree with approving Ampligen too for the mere fact this will help knock out the psychobabble culturally surrounding the ME/CFS diagnosis in mainstream medicine.

    After that though, as a treatment and based on both personal experience as well as having researched it at a depth and degree the links provided in this thread simply don't represent, it's not worth the side effect it troubles one with, let alone the extreme price.

    Also, there are ALREADY treatments available to ME/CFSers(glutathione builders like RenewPro, ImmunePro, etc. predominantly) that do a far superior job with both calming down herpes and other type infections that sometimes become active in us as part ME/CFS pathophysiology. This is in addition to the good possibility that they are also getting at or at least closer to addressing the root cause of ME/CFS.

    MB

  16. ladybugmandy

    ladybugmandy Member

    MB...are u Erik Mold Warrior?
  17. mindblower

    mindblower New Member

    No. I'm not him.

    MB
  18. aftermath

    aftermath New Member

    "Mindblower: I agree with approving Ampligen too for the mere fact this will help knock out the psychobabble culturally surrounding the ME/CFS diagnosis in mainstream medicine."

  19. SpecialK82

    SpecialK82 New Member

    Hi MB,

    I'm so sorry to hear that you've had a bad personal experience with Ampligen - I would love to hear about it if you'd like to share.

    I must not be researching the right places, because I haven't really seen the bad reactions that you are speaking about - I've checked here, yahoo group CFS, and also googled it. I will have to dig further. I did read about a suicide and another person that was hospitalized but without further details, I don't know that I can attribute it to Ampligen.

    My attraction to Ampligen (at least in theory) is that it works with the immune system and seems to address actual problems not just symptoms. I've just really started reading about increasing glutathione which I'm also interested in - have you had success with it?

    I'm hoping also if Ampligen is successful on the market it will inspire other drug companies to research CFS.

    Kristina
  20. mindblower

    mindblower New Member

    "...My attraction to Ampligen (at least in theory) is that it works with the immune system and seems to address actual problems not just symptoms. I've just really started reading about increasing glutathione which I'm also interested in - have you had success with it?..."

    Whoa, yes Kristina, that's just a theory that I don't even think the company that makes it would honestly stand by at this point. It does address some symptoms that other products, a few I mentioned, have long since demonstrated address just as well and obviously far better in the instances of those glutathione boosters.

    Yes, these products have eliminated in me flu-like weakness, exertional relapse issues, low thyroid levels and low blood volume. Its my understanding the Simplified Approach is doing the same in people and perhaps getting at a deeper issue for ME/CFS regarding methylation blockades effect on glutathione levels.

    But I can't really comment from direct experience with this protocol and recommend you speak with those now doing it if interested.

    MB