Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Dr Dan Peterson talks from Sweden - likes ampligen.

Discussion in 'General ME/CFS News' started by minkeygirl, Dec 25, 2015.

  1. minkeygirl

    minkeygirl But I Look So Good.

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    This is from Simmaron via Cort




    Dr. Daniel Peterson
    Dr. Peterson was at the epicenter of Incline Village outbreak three decades ago that helped put chronic fatigue syndrome on the map. He’s been on the cutting edge of immunotherapies and antivirals ever since. He’s been using and gathering data on Ampligen for decades. He was the first to dare to use the powerful antiviral Vistide in ME/CFS and he used it successfully.

    Dr. Peterson gave Ampligen a strong endorsement stating that it’s the only therapy he’s seen in his three decades of work that’s been able to return ME/CFS patients to full health. He gets about a 70% response rate (not all of which get such strong results.)


    - See more at: http://simmaronresearch.com/2015/11...tigue-syndrome-patients/#sthash.OxsDiPuB.dpuf

    http://simmaronresearch.com/2015/11...verely-ill-chronic-fatigue-syndrome-patients/
     
    Last edited: Dec 25, 2015
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  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Wow he says ampligen is the most effective treatment he has seen in 3 decades. He says he is able to get people to full health with a 70% response rate. And one of the few drugs to increase nk cell function .

    Its been around awhile now, if proper funding was given they could have found more convenient ways to administer it, much like the subcut G globulin etc
     
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  3. Kati

    Kati Patient in training

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    I don't want to ruin the party but patients who are currently on Ampligen say it is not a cure for many, many people but it is certainly much better than having nothing at all.

    I am not adverse to Ampligen but it is expensive (more so since hemispherex decided to raise the price) and few are able to afford it. Moreover, Dr P selects his patients very, very carefully and has been the go to person for management of Ampligen. He has a lot of experience under his belt. i am not sure if other physicians using it have the same 'success rate'. Moreover, I am not sure how many of his patients successfully return to work. mind you, better functionality is a very good thing and i would welcome this too.
     
  4. minkeygirl

    minkeygirl But I Look So Good.

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    No one said a cure. And what you said about ampligen could be said about rituximab.

    It's another option for us. The more the better. I sure as hell am not going to wait 5 years for anything.
     
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  5. Kati

    Kati Patient in training

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    Sorry I misinterpreted response rate for recovery. My bad.

    Absolutely. If It was offered here I would certainly do everything to get it.
     
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  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I just think if it wasnt ignored for so long by govts etc ampligen could have been improved. My understanding also is that other cfs type treatments arent to be used with it to help make ongoing study more true. But could people improve more with multiple treatments ? ?

    Dr P definitely can pick the correct patients for correct treatment but he also uses other labs like nk testing etc to help define his diagnosis .

    I think thats going to be the issue with most treatments. Rtx 30% recovery thats mentioned im sure could be higher once drs understand who is suitable for rtx and use more than just the CCC to diagnose cfsme. But say it improves to 70%, this may not be for all cfsme people but just those patients that fit certain criteria as possible responders.

    No matter what treatment is plucked out of the air be it ampligen , rtx, avs or arvs etc , theres generally a 50/50 or 60/40 who respond or who dont. The odds of something helping for someone purely diagnosed off the ccc crieteria without and potential biomarkers like dr p use for ampligen, there's still a large amount of people left without a treatment .

    Probably the only true way to know if something helps is to try it but cost is high, risks of side effects are high and science takes years to come to any conclusion with some of the top shelf treatments currently being researched.

    Probably why im interested in treatments we can use off label now.

    I'm also dubious of a silver bullet, i think its going to take a few bullets.
     
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  7. minkeygirl

    minkeygirl But I Look So Good.

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    The first book I read after I got diagnosed was by Tim Kenney. Don't remember the book title or a lot of details so don't come after me over that.

    He was in am ampligen double blind trial and it helped him hugely. I remember that to this day. He had a great response.

    I'm 20 years in. I don't expect a cure. I just want some relief. And not in 5 or 10 years. I need it now.
     
    Last edited: Dec 25, 2015
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  8. Kati

    Kati Patient in training

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    If we only could understand exactly what is going on. Then pharma could take it from there. :rolleyes:
     
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  9. sarah darwins

    sarah darwins I told you I was ill

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    Have other immunomodulators been tried for PWME? Things like Azathioprine and tacrolimus that are used for Crohn's Disease?
     
  10. Daffodil

    Daffodil Senior Member

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    we dont know that ampligen is the only thing to increase NK cell function, though. no one i know has had theirs tested after Lyme treatment, for example. some have recovered with continued immunoglobulin..maybe their NK cell is back to normal? who knows
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Peterson says its one of the few drugs that increase nk function. He's probably one of the few that use ampligen and does before and after nk testing?

    Immunovir is suppose increase nk function. Also the drug used for the morning after abortion pill is said to work by increasing nk function but never heard it used for cfsme or if its even feasible .
     
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  12. Daffodil

    Daffodil Senior Member

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    @heapsreal ...yea peterson definitely does before and after NK function testing with Ampligen and you are right....that's the only thing I have heard of that can increase it back to normal levels.

    come to think of it, i am sure peterson uses antibiotics too and if that normalized NK cell function, he probably would have announced it by now.

    ampligen is an interferon inducer, if i remember correctly. wonder why we cant be treated with interferon.

    i do know someone who takes it and reports feeling better and increase in NK cell function, but not sure if its to normal levels .

    xoxo
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Interferon itself from what I have heard is hard to tolerate and makes people feel ill first. Chia has used it for EV.

    From what i have read about interferon inducers, some stimulate alpha and beta interferon and less of gamma interferon and gamma is said to be highly inflammatory while the others are more anti inflammatory .

    Theres alot of research on interferon inducers that was done in russia and other eastern block countries where they used it to treat many different types of infections.

    Dont know if they are cures but would probably help with avs or abx??
     
  14. Vineyard1

    Vineyard1

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    Does any one know if Natural Killer Cell activity plummets after you stop Ampligen possibly putting you back at square one?
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im guessing a relapse could indicate nk function dropping ? ?
     

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