Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Update on Ampligen Availability in the US

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Jesse2233, Feb 16, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    For the last week I've been trying to find a US doctor still using Ampligen.

    After numerous calls with the offices of Dr Peterson, Bateman, and Lapp, I discovered that as of 1/30/2017 Hemispherx has discontinued their 511AMP Cost Recovery Program.

    That means you can't get Ampligen in the US anymore, even if you pay the full price. Hemispherx may roll out a new US trial at the end of the year, but it will be double blind with a placebo, meaning you won't know if you're actually getting treatment.

    This leaves Europe and Argentina as possible locations to get Ampligen. Even though it's now approved in Argentina, my understanding is that the doctors there do not acknowledge ME, so Europe seems to be the best bet.

    I contacted a Netherlands based company called myTomorrows that will help set up patients with doctors in Europe who are willing to use Ampligen. They are researching the best option and will contact me next week. I will keep you updated with what I learn
     
    leela, dangermouse, Sancar and 8 others like this.
  2. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    I'll quote what I wrote in another post:
    http://forums.phoenixrising.me/index.php?threads/good-cfs-me-doctors-in-argentina.49325/http://forums.phoenixrising.me/index.php?threads/good-cfs-me-doctors-in-argentina.49325/
    "I live in Argentina and I don't know a single doctor who even knows what ME is. Please if you value your life and well-being, NEVER MOVE HERE. This country is a complete disaster, the economy is collapsing right now and there's clearly going to be an uprising soon. The medical system is a joke, doctors don't even know how to diagnose or treat a symple alergy, and they get very aggressive and violent if you just attemp to ask them to research something about ME, or POTS, or wathever you've got in order to help you. If you came here having ME, you're DOOMED, as I am. I've been searching for medical help for ME for 20 years, without getting any results. My situation is so terrible that I'm currently attending a psychologist so I can "let go" and learn to leave with the pain an disability that this disease cause since there is no hope that I can get any help here, I'm serious. Think very carefully about what you're going to do, good luck!
    By the way, I think the idea of the company who is going to manufacture Ampligen in Argentina is to sell it in Europe, please research that. Perhaps you should be considering moving to europe instead of argentina"
     
    ScottTriGuy and Jesse2233 like this.
  3. Jesse2233

    Jesse2233 Senior Member

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    Thanks @lauluce your advice is well taken!
     
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  4. Thomas

    Thomas Senior Member

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    When you find out would you please let us know which countries/cities/doctors in Europe will be using Ampligen? Thanks a lot.
     
  5. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    I got a question: ampligen has been approved in Argentina for treating SEVERE cases of ME/CFS, do you think it might work on moderate cases? I'm my particular case I'm well enough as to work full time from home, but that's all I can do in my day, I'm left without enough energy to even bathe properly. Of course that is not the only symptom, I met ccc criteria and I've got a positive repeated excercice test
     
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  6. Thomas

    Thomas Senior Member

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    I think like with any ME/CFS treatment you have to try it to see if it will help you or not. And "severe" can mean many different things to many different people.
     
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  7. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    in your opinion does severe means, in my own words "I don't know who I really am, there are all those things I could do without this thing on my back but I can't. Every morning I have to think about the good reasons I have to gather all my willpower everyday to live and work while withstanding the severe physical punishment this disease gives me without any mercy"
     
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  8. Jesse2233

    Jesse2233 Senior Member

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    Update: Found out that Hemispherx is having supply issues with Ampligen and it is not available in Europe or Argentina. So in other words there is no place on Earth (to my knowledge) currently offering it (though it should be available again on a trial basis at the end of the year).
     
  9. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    hemisferix must just be a bunch of CEOs looking for a quick buck....what could they care about our suffering...
     
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  10. Jeremy C.

    Jeremy C.

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    As I understand it, the Ampligen used in Argentina will not be the Hemispherx-manufactured Ampligen, but will be manufactured by another company (I think a Spanish company). This has happened before with a South African company called Bioclones. I was in one of their trials in the early 2000s. Hopefully the Argentinian manufactured product is cheaper and more available than the Hemispherx produced product.

    @Jesse2233 Has myTomorrows given you the names of any doctors yet? Ampligen was extremely effective for me when I was on a trial 12 years ago. It basically put me into remission and I regarded myself as cured, after having been completely bedridden for four years. I would also consider moving overseas for treatment with Ampligen. I contacted myTomorrows a while ago, but they told me they didn't advocate medical tourism.
     
    Last edited: Mar 31, 2017
  11. Jill

    Jill Senior Member

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    Wow , I've only heard of Mary sweitzer having success. Are there a lot of people like you ie stuck knowing there's a treatment that works and are now unable to get it? I remember Charles Lapp saying to my friend who he stayed with here in nz that ampligen was v effective but the company is hopeless. So that is in fact true ? It's been really hard to work the ampligen story out and I've been following ME since the 80s. My god if you were cured you'd think another company would be interested but I guess no one believes you? How many of you are there ? Were you one of Lapps patients . It's disgusting you are left like this
     
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  12. trishrhymes

    trishrhymes Senior Member

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    Hi @Jeremy C. So good to hear Ampligen helped so much. Do you mind telling us how long the effect lasted? I see you are wanting more, so deduce that the effect wears off.
     
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  13. Jeremy C.

    Jeremy C.

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    I'm in Australia, @Jill. The trial I was on was run by the Bioclones, a South African company which was producing Ampligen in the early 2000s. Of the four people in my doctor's cohort of the trial, it was successful for 3 and the fourth had an allergic reaction. One person improved and never relapsed (went back to work, normal life) but the other two of us (I had gone back to finish my university degree, she moved out of home and started working) relapsed after the end of the trial.

    I have been trying to get it through a company called Emerge Health, which did a deal with Hemispherx to distribute it in Australia and NZ. However, my application to the Australian Special Access Scheme was rejected.So my only option is to somehow get it overseas.

    Ampligen has worked for a lot of people. I have some of the testimonials made to the FDA, but they are in Word files, and for some reason I cannot upload them here.
     
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  14. Jeremy C.

    Jeremy C.

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    I relapsed almost as soon as I was taken off the drug, but some of the effects lasted for about five years after that. I am housebound now, but in the five years after Ampligen I was able to go out and do stuff on occasion. It was push crash, but I can't even push myself that much any more. I even went and stayed at the beach with friends about three years after finishing the trial.

    But I never got as bad as I was before the Ampligen, when I was completely bedridden and requiring 24 hour care.
     
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  15. Jill

    Jill Senior Member

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    @Jeremy C.

    Yes I tried to contact that emerge health crowd and their never seemed to be anybody there and they didn't answer emails.
    What does it take to appeal the decision ? Were you treated in Australia ? Those are fantastic results . What does your dr who gave it to you have to say ? Crikey I would try any of these things in an instant but to be in yours shoes actually knowing a med gut you back to life I can't imagine what it must be like . What an friggin cruel joke. This is insane let alone unethical . Geez, I really feel for you x
     
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  16. Jeremy C.

    Jeremy C.

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    Emerge Health can't communicate with patients: the Australian government is really strict about that, so it's not their fault. However, they can talk to you via your doctor. They have been really good with me, but will only answer my doctor's emails and have had long talks on the phone.

    I am appealing the decision at the moment, but I am told that the appeals are almost never successful. Yes, my trial took place in Australia. It was amazing, but the doctor who administered it was very disappointed when two of us relapsed at the end of the trial.

    It does seem insane that there is a drug that works for me and I can't get it, even when I am willing to pay.
     
    leela, Chezboo, J.G and 4 others like this.
  17. jpcv

    jpcv Senior Member

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    How was the schedule of infusions?
     
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  18. Jeremy C.

    Jeremy C.

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    Two a week
     
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  19. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    hey folks... is there actually any evidence that ampligen works after all? how does it work? any insight or source where I can read about it?
     
    ScottTriGuy likes this.
  20. jpcv

    jpcv Senior Member

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    SE coast, Brazil

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