1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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Article: Breaking Out!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 28, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Cort

    Cort Phoenix Rising Founder

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    Congratulations Kelvin and so much thanks for sharing your inspiring story. Mike Dessin described to me a similar situation as he began to tear through his mental barriers and fear when he began to physically heal. As he began to regain his strength they began to drop away.

    Continued good luck!
  3. Sasha

    Sasha Fine, thank you

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    Fantastic, Kelvin! I'm so happy for you. And thanks for telling us about it! Even those of us who can't access Ampligen at least have something to hope for.
  4. Cort

    Cort Phoenix Rising Founder

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    Its hard to believe Ampligen won't get approved. Mary McGrory told me it passed the efficacy tests but the FDA put out a toll like receptor drug that gave some people an autoimmune reaction (very dangerous) so they are going over the safety issues with a fine toothed comb. Ampligen, though, has decades of data (on small trials) - it should be able to pass that hurdle fine, I would think.
  5. voner

    voner Senior Member

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    Kevin:

    Is there any way you can post any other non-legal bound info on "what kind of ME/CFS patient you are"...I still like the idea of Cort's "Patients like me" software.....

    might help some of us sort through the possible future Ampligen versus $$ decision..

    thanks & Hurray !!
  6. cruzgirl

    cruzgirl

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    Thanks for a very inspiring and emotional journey. I hope one day soon we may all have access to Ampligen or something that will make us better too. Just to see one person getting well inspires me. Thanks.
  7. Wayne

    Wayne Senior Member

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    Hi Kelvin,

    Thanks for taking the time to report on your progress. As others have mentioned, it's inspiring to hear of someone making remarkable progress. I suspect it feels like a miracle to you.

    You may have mentioned this in the past, but I was wondering about some of the specifics of how you were able to participate in this ampligen program. It sounds like a person has to be willing to move somewhere, among other things. If there's an article you've written that describes some of these specifics, I would appreciate it if you or somebody else could steer me in that direction.

    I enjoyed perusing your personal progress table. I was intrigued by your description of 1-2 minute "bursts" when reading. I feel my whole life revolves around gearing up for various "bursts" that are essential to daily living, such as shower, eating, etc.

    It's sort of an unnerving way to live. I know I can only be active for so long, and end up getting anxious about having the energy to finish things. This anxiety probably uses even more energy, so disciplining myself to relax is so important. And yet even that seems to require a different kind of energy.

    Anyway, I digress. Thanks again for your update. I hope you keep them coming. BTW, I used to live in Boulder, CO, so can relate to some of your descriptions of the crisp clean air and the Rocky Mountains. I'm happy to hear you were able to have such a successful trip.

    Best Regards, Wayne
  8. 5150

    5150 Senior Member

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    Dear Kelvin, sounds like a story of a degree of success; I don't know details yet...will try doing a thorough effort as soon as I can.

    were you pretty much non-functional in the beginning? and what is the expected liklihood that your improvements will be long-term or permanent? IS Ampligen specifically recommended for ME/CFS or is it considered off-label? I heard it's expensive, did you have help paying for it? How will others obtain help paying for it?if you know.So I think I hear you saying you are pleased and therefore will encourage others to try it also?

    Best future hopes too.
  9. August59

    August59 Daughters High School Graduation

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    Ampligen $$$

    If Ampligen would hurry up and get approval then we wouldn't have to put up so many $$$ signs when we talk about Ampligen. Maybe Cort knows of some type of timeline on Ampligen right now.
  10. Marg

    Marg Senior Member

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    Hi Kevin,

    I am so happy for you. You have inspired me on your journey, you are nearing the finish line, what a day that will be!
  11. Enid

    Enid Senior Member

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    Many thanks Kevin for your happy story. Good to hear Ampligen actually worked so well and of your own positive thinking out. All best wishes.
  12. Kelvin Lord

    Kelvin Lord Ampligen Journalist

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    Yes, 5150, I was pretty much non-functional by the time I arrived here late last December. As to the financial aspects and costs for treatment, clearly, it is a big investment at this time. Until Ampligen is approved, the only way to get it is in what is called "cost recovery" as part of a drug trial. Currently in the USA there are only 2 clinics now that I know of taking new Ampligen patients: Dr. Peterson at WPI in Reno and Dr. Lapp at Hunter-Hopkins Clinic in Charlotte. I think Dr. Bateman in Utah also has Ampligen patients but I heard she was not taking new ones at this time.

    The "cost" in dollars, in a word, is expensive. Not just because you are paying for the drug, which costs $95 per vial, but for most of us here, we had to move from our homes and uproot our lives. So for me the cost was huge because I came here 5000 miles from South America, and had to rent an apartment, get a car, etc.

    But at the final analysis, I came to the conclusion that I would invest whatever I could, sell whatever I had, to give my life a shot. After having tried EVERYTHING, including but not limited to Kutapression injections, Glutathione injectiions, B-12 injections, Valtrex, Valcyte and a slew of antivirals, Nuerontin, Klonopin, pure juice diets, whey protein, and countless more drugs and ideas, I came to the conclusion that Ampligen was my last hope. I based that on this quote from Dr. Lapp: "Everything else we've tried treated the symptoms; only Ampligen has been proven to treat the root cause, the problem."

    So I was literally on Maslow's lowest rung, and decided, with my wife's support, to go for it, and moved here to get Ampligen twice a week for a year. For more on this whole perspective of sacrificing your money and a year to get a drug, you can read my thinking on my blog entitled: "My Peter Falk View of Ampligen"

    For me, although it HAS been expensive, the cost was worth it, as I am feeling so much better. Hope that helps give a little more perspective to your questions. K
  13. Sasha

    Sasha Fine, thank you

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    What's your view on maintenance of Ampligen, Kelvin? I remember reading somewhere that people who did well on Ampligen but came off it had a decline in their health. Maybe my memory is not accurate, though! But are you expecting that you will have to stay on it long-term?
  14. LaurelW

    LaurelW Senior Member

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    I have some experience from that, and some hearsay. In the Ampligen trial I was in, a number of people had their health decline as soon as they went off the drug. Two of us had extended periods of good health. I lost track of the other person, (who was 21 at the time of the trial), but I stayed well for 4 1/2 years. I think I may have stayed well longer, but I had an extended period (a couple years) with lots and lots of stress. So I think the way to handle it is to remember that Ampligen isn't a cure, but it seems to put your immune system in a good enough state to keep you pretty well as long as you continue to take good care of yourself. You have to make sure you still get enough rest, don't keep overdoing it, minimize stress, etc.

    One more thing--I think that the benefit from Ampligen lasted the longest in those of us who got the most benefit out of it in the first place.:victory:

    As for myself, I crashed big time last year and am anxiously waiting for the drug to be approved, because I know it will make me better. If anybody wants to come up with an actual cure in the meantime, though.......
  15. Sasha

    Sasha Fine, thank you

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    Interesting, Laurel. I had a period of natural remission for a few years and relapsed seriously again after a long period of overdoing it without realising that I was still ill (I thought I had completely recovered and didn't realise it was possible to get sick again). Maybe Ampligen can do artificially what my own immune system eventually did naturally. I wish I could figure out how to get it to do it again!
  16. LaurelW

    LaurelW Senior Member

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    Me too! I so badly wanted to put my life as a sick person behind me that I acted like a normal person. Hooboy, did I get a lot done and have fun. I got within a couple classes of my college degree--in Japanese! Nobody can tell me that Ampligen doesn't work.

    If you figure out how you did it without drugs, let me know, please!
  17. jimm

    jimm

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    of course it is wonderful that some pople including this blogger are improving, and I hope they continue to improve. But personally I am very confused about some of the actions of hemisperex and the company does not come accross favourably in my opinion also I think its good to look at any situation and weigh up both sides of the fence, and here on this link there are clearly some trial participants who have a lot of worries about hemispherex

    http://www.ncf-net.org/forum/ampligeninPink.htm

    I agree with the blogger in the link above that having doctors on the board of trustees IS a conflict of interest no matter who is on the panel!
  18. Wayne

    Wayne Senior Member

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    Hi Kelvin,

    I would agree with the above. I've long thought I would rather do some kind of immune modulating drug/protocol, which to me gets to the root of our problem. Anti-virals, anti-retrovirlals, etc. seem to be addressing infections which are more downstream from our immune system deficiencies.

    Hi Laurel,

    I read a rather obscure book back in the 1990's about treatment of CFS in Japan. As I remember, they did a study/trial in which a number of PWCs were given a "cocktail" of immune-enhancing mushrooms. After a period of time, I believe as many as 50% of PWCs experienced significant improvement, while there was little to no improvement in the control group.

    I've remembered this all this time, and am considering any number of immune-enhancing strategies. There's the LDN that has been discussed here, plus there are a number of herbs/vitamins that are reputed to be helpful as well. A couple of good threads on these topics are also available on this board.

    One product I've been considering, is a combination of immune-enhancing mushrooms in a product called RM-10, a product of Garden of Life. I've read some remarkable testimonials regarding this product, although I don't remember any referring to ME/CFS. Unfortunately, it's a bit pricey, although it is much less than Ampligen.

    RM-10 / Garden of Life Website

    Anyway, just a few more thoughts to throw into the mix.

    Kelvin, thanks for the information about Dr. Petersen at WPI accepting new patients for Ampligen. I live 300 miles from Reno, and I plan to inquire as to whether I might be a candidate.

    Wayne
  19. Kelvin Lord

    Kelvin Lord Ampligen Journalist

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    Sasha, my plan is to finish the full 52 weeks, and then leave...NOT to stay on Ampligen long-term. I have had personal contact with at least a dozen patients who had Ampligen, three from the first trials in 1991, plus many since then, and with few exceptions, all are still very grateful and thankful they received the drug. They can show measured improvement in so many areas- cognitive, sleep, productivity and more. Yes, of those dozen people, maybe 20% (two or three of them) have gone back to get a "booster" of Ampligen after some years. But ALL had positive results, and everyone I spoke to except one person went back to work.

    It is also true that all of these folks I've spoken to agree that they have to NOT overdue it with their new found recovery. You can't go out and run a marathon. No drug that I know of puts patients back to where they were "before they got sick" at 100%, but Ampligen has been documented to do the most recovery, for the most people. My doctor says to expect to run my life at 70-80% of the RPMs I used to. Kim Phillips was one of the original patients in the 1991 trials and she has been going 19 years now, working full time Monday - Thursday I think, and riding her horses on weekends. No booster, just 19 years since Ampligen and she tells me she has "a relatively normal life."

    Jimm, you are wise and correct to get all the information you can about Ampligen, or any treatment-- which is why I love the Internet and Forums like this. I am not an advocate for Hemispherx, but just know this as you look at research, especially like that which you sited:
    1. The "testimony" you linked to on that "FORUM" is at least 10 years old;
    2. It was not documented in any journal or scholarly report;
    3. Hemispherx is a publicly traded stock, and it was proven that many of these "negative" stories about the efficacy of the drug had their genesis in "short-traders" who banked on the stock tanking.
    4. The actual results from those early trials can be found documented. In fact, I recommend that everyone look at the hundreds of publications that Hemispherx and others have done on Ampligen. It is the MOST tested drug for M.E./CFS out there. Anyone can see all this research by simply going to Google Scholar (use the "MORE" menu bar and Google and select Scholar") and load in "Ampligen". You'll see how it has worked for HIV patients, for H1N1 patients in Asia, and of course for XMRV recently.

    Having said that, I agree, as we all do, that it has been almost criminal the amount of time Hemispherx and the FDA have been horsing around with this drug, and the approval process. Yes, it normally takes 7 years for a drug to go through the entire gauntlet, but we are now looking at 20 years! That is insane. But in my interview with Dr. Lapp, he says there is hope for approval. You can read it here: http://bit.ly/andAJc

    Believe me, I didn't have $50,000 laying around in a bank account when I decided to come here and pay for Ampligen. It was a huge upheaval to our lives, and it cost way more than money. But I still think it was worth it. If I stopped today, it would have been worth it!
  20. mojoey

    mojoey Senior Member

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    Thanks again for your update Kelvin! There is no question that ampligen works for many while they're on the drug, but my own concern has also been the ability to maintain gains once you need to stop it. Laurelw, Andrea W, Bob Miller, Mary Schweitzer all lost gains once they stopped the drug, although Laurel's 4.5 yrs is the longest I've heard. Yet Kelvin is saying that at least 66% of the patients he's spoken with were able to continue working full-time after stopping the drug completely. It would be staggering if even 50% can be extrapolated to the hundreds of patients that have taken ampligen for 52 weeks. It might just be that we're talking to small and rather uniform pools of patients. Of course, ampligen wouldn't be able to step in here because they're not monitoring patients after they stop the drug and would be relying purely on self-reports, so I have no idea how we can access this data.

    Laurel I find what you said about patients that responded the best initially being the ones that had better responses once they had to stop very interesting. Perhaps some that are on the fence about the 20k/year cost for ampligen and don't have to uproot themselves completely to try the drug can try it for a short period of time. The open-label cost-recovery trial is not binding, meaning you can drop out at any time. I also believe that unlike the double-blind trial, the treadmill testing is optional here.

    Kelvin I'll be very interested in hearing how you do once you stop the drug. Hopefully you'll be one of the lucky ones!

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