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!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

First Ampligen, second antiretrovirals?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Berthe, Nov 11, 2010.

  1. Berthe

    Berthe Senior Member

    Messages:
    136
    Likes:
    0
    near Antwerp
    I'm going downhill with the speed of light. At the moment somebody is taking care of me and my children. I'm getting quit desperate.
    Can someone tell me if taking Ampligen would stand in the way of taking antiretrovirals later?
    I seriously consider taking Ampligen, but am afraid that it will mean that I might be resistant to antiretrovirals (when the time is right).
    Does this make sense?

    Love,
    Berthe

    http://www.onwilliglichaam.blogspot.com
  2. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Hey Berthe,

    Have you seen Kenny De Meirleir? If not why not consider seeing KDM and seeing if you're a candidate for gcmaf. It's waaaaay cheaper than ampligen and theoretically would not interfere with ARVs down the line whatsoever because it is working with your innate immunity (by stimulating macrophage activity). Ampligen might work in a similar way by stimulating interferon gamma, which might lead to all the downstream effects like improving NK cells, lowering rnase-l dysfunction and calming cytokines, but it has also been shown to kill XMRV in the test tube directly, which may (again in theory) lead to some resistance. In a nutshell, it still isn't crystal clear exactly how or why ampligen works, so it's a toss-up on whether it may lead to resistance. With gcmaf you know what's happening, so even if it ends up not working, the risk-reward ratio is higher esp with the price tag.

    If you do decide to ampligen, would you do it with Kenny? I know he used it in the past, but for some reason or another discontinued. I'm guessing price tag+gcmaf being the NKOTB
  3. Berthe

    Berthe Senior Member

    Messages:
    136
    Likes:
    0
    near Antwerp
    Hi Mojoey,

    Thank you for answering. Until this moment I decided not to go to dr. De Meirleir because I don't agree with the huge amount of antibiotics he prescribes. I never doubt his sincerety in prescribing what he thinks will be necessary, but I've had moderate CFS, having energy for 4 hours a day, doing not that bad until a few months ago (Am now bedridden). For the moment I'm looking at the options I have. Money is in my case no objection, so I'm a blessed and privileged girl. I was excited about some stories I've been reading about Ampligen and didn't find the same results showing up with Gc. Maf. Perhaps I didn't look in the right places.
    Perhaps I have to do more research.

    Are you a patint of Kenny?
    And if so, are you on Gc.Maf? A friend of mine is on Gc. Maf prescribed by Kenny. In week nr. 4. I'm curious about her progress.

    Love,
    Berthe

    http://www.onwilliglichaam.blogspot.com
  4. Sasha

    Sasha Fine, thank you

    Messages:
    8,083
    Likes:
    6,892
    UK
    I don't have anything useful to say, Berthe, except I'm sorry you're so ill now and I hope you find something that works for you.
  5. Berthe

    Berthe Senior Member

    Messages:
    136
    Likes:
    0
    near Antwerp
  6. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    Hey mojoey do you have a link to the "ampligen kills XMRV, in a tube" part? I totally missed all that.

    Sorry Berthe to hear you are not feeling well. It comes and goes for me, do you think it will go for you or is this permanent? If so going to see the best doctor available sounds like good advice.
  7. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Hey George,

    Peterson told me that, although it was possible he meant that ampligen has been shown to inhibit retroviruses: http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102198771.html

    Berthe,

    I would personally not use the prescription of ABx as a knock against KDM, although I agree that liberal use of ABx is foolhardy. Peterson also prescribes ampligen, but he also prescribe ABx whenever there is evidence of bacterial infection, just as he prescribes vistide for active herpesviruses. Plus you can always say no right? ;)

    I am not a KDM patient, but I believe KDM is very high on gcmaf right now. He said one of his patients is XMRV pos and went back to work full-time on gcmaf. I've heard other positive (not quite as dramatic) results from his patients. Enough to think it is worth considering for myself personally. Consider yourself lucky that you're in brussels where, if you decide to try gcmaf, you can get access to the one Kenny is prescribing. Those of us in the US have no such luck because it not being sold commercially at the moment. This is not in any way shape or form meant to sound like a guilt trip ;)
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,892
    Likes:
    5,737
    Albuquerque
    Hi Berthe,

    Really sorry that you are going downhill. I know it is very scary and particularly when you have others dependent on you. I have been through some really scary times too.

    I hope you do see KDM. I'd hope that he would listen to your input on the kind of treatment you prefer. In any case, he seems to be getting solid results for CFS patients--particularly if they are XMRV +. I also heard somewhere (must have been a patient) that he is no longer giving Ampligen.

    I am taking the financial/energy expenditure risk of flying from the US to see him at the end of Jan. I would prefer to work on the immune system and any viral or bacterial infections I have rather than taking anti-retrovirals at this point when the response seems to be so mixed. I know I am XMRV + and hope to take GcMAF as there seems to be a lot of potential there for a turn-around. And, it is much cheaper than Ampligen.

    Seems like you wouldn't have a lot to risk by seeing him--you are close, he can give you valuable input through his testing to see what is really going on--and you can choose whether or not to follow his recommendations.

    I really hope you pull out of this down-turn soon.

    Best wishes,
    Sushi
  9. Berthe

    Berthe Senior Member

    Messages:
    136
    Likes:
    0
    near Antwerp
    Thank you Sushi, Mojoey and George,

    I know I'm very lucky to be in the neighbourhood of KDM. I also ordered a lot of tests of Redlabs to put together my own medical file, including results from cardiologist and endocrinologist. The results from Redlabs will be in somewhere in December and I have an appointment scheduled with a professor immunology in Antwerp in January. Like some of you I'm waiting for the xmrv test as well. My further action will depend on these results. Perhaps Gc.Maf is the right thing for me. Perhaps I'm seeing dr. Peterson. Funny how we all fly accross the world in opposite directions, looking for treatment. :D

    And George, I also had the same 'come and go' experience with the disease for ten years. Unfortunately this time its worse. Never been bedridden in my life before.

    Love,
    Berthe

    http://www.onwilliglichaam.blogspot.com
  10. Merry

    Merry Senior Member

    Messages:
    1,357
    Likes:
    607
    Columbus, Ohio, USA
    Hi, Berthe.

    I don't know enough to advise you on treatment, but I just wanted to say that I'm sorry to hear that you are now feeling worse than you've ever felt. And you have children to worry about.

    Please know that I am thinking of you.

    Merry
  11. Berthe

    Berthe Senior Member

    Messages:
    136
    Likes:
    0
    near Antwerp
  12. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    7
    Europe
    Berthe you can also tell Kenny you don't wish to take the antibiotics. But you can still be on things like artesunate.. Btw the antibiotics he prescribes aren't heavy loads and it is limited to about one week a month. He also gives good probiotics afterwards. Believe me i'm not a big fan of antibiotics either, i'm concerned of actually doing more harm in the long run (links to cancer, etc.), but i'm still following the protocol. It's up to you.
  13. JohnnyD

    JohnnyD Senior Member

    Messages:
    144
    Likes:
    210
    Here is a link on this site George, the full paper is somewhere on the net... but cannot locate right now.

    oops forgot the link:
    http://www.forums.aboutmecfs.org/showthread.php?0&p=78250
  14. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
  15. JohnnyD

    JohnnyD Senior Member

    Messages:
    144
    Likes:
    210
    George, that was regular memory at work :) ... just goes to show. I don't have CFS, but I have a sister who does (22 years, CFS is actually an old diagnosis, her current diagnosis is Lyme) and so I follow developments as closely as I can. My sister was helped by ampligen a number of years ago and so I follow (and invest) in the company as well.
  16. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    947
    Likes:
    91
    johnny
    can u say more about yr sister's experience?
    have u posted about this elsewhere?
    we need as much first hand feedback as possible since the therapy comes with a $20,000 price tag.
    thanks.
  17. JohnnyD

    JohnnyD Senior Member

    Messages:
    144
    Likes:
    210
    Hi Aquariusgirl,

    My sister was part of the 516 in the late 90's under Dr. Salvato in Houston. A difficult aspect of an ampligen trial is that you must re-locate... which adds expense and stress. My sister lasted about 6 months in Houston, before she had to come home -- she was living in a noisy boarding house situation. But the gain was significant, she went from operating at about 25% to 50 or 60%. Years later she tried ampligen again, moving to Incline Village under Dr Peterson -- there were complications from concomitant medications and dosing, and the gain from that round was not nearly as significant. The company says they intend to do another phase III, they have identified an xmrv sub-group, so I believe there will be a chance for some folks to get in on a trial, other than the cost recovery trial. Hope that helps.
  18. Berthe

    Berthe Senior Member

    Messages:
    136
    Likes:
    0
    near Antwerp
    Thank you very much Frank,

    After reading all your information I will make an appointment. I thought you had to follow his protocol... The least I can do is talk about my concerns. Do you know if he is still using the Ampligen? I did see a dutch woman in n vandaag in april who moved to Brussels to get two IV every week. Could this be Ampligen?

    Love,
    Berthe

    http://www.onwilliglichaam.blogspot.com
  19. maryb

    maryb iherb code TAK122

    Messages:
    2,806
    Likes:
    1,898
    UK
    Berthe - 2 IVs a week is the normal way to administer Ampligen, but KdM's clinic do other IVs as well so without confirming it with her impossible to tell. I am also a patient of his and am going to ask at my next consultation about Ampligen (when I also get my test results:worried:)
  20. Sasha

    Sasha Fine, thank you

    Messages:
    8,083
    Likes:
    6,892
    UK
    I don't know much about investment but do shareholders get a vote at company meetings? Would a form of activism be for PWC to buy individual shares in Hemispherx and lobby at the shareholders' meetings?

    Hemispherx's bad management of Ampligen is in our way.

See more popular forum discussions.

Share This Page