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Ampligen Experiences

Discussion in 'XMRV Testing, Treatment and Transmission' started by mojoey, Jul 28, 2011.

  1. mojoey

    mojoey Senior Member

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    I recently posted a google document on Ampligen experiences, and another patient on Ampligen suggested that I start a new thread with the document to increase visibility.

    Here is the link: tinyurl.com/3zly3ks

    As of today, we know of Dr. Peterson, Dr. Bateman, Dr. Enlander, and Dr. Lapp administering ampligen under the open-label trial. Several patients of Dr. Peterson have been able to get the drug at half the normal dosage (normal is 400mg), effectively cutting the drug cost by half and still getting a similar amount of benefit from that dose. Other doctors have not been as flexible. The usual protocol is to start the drug at a lower dose (100-200mg) and work up to 400mg as quickly as comfortable possible. At full dose, the drug plus administration costs is just under $24,000 a year. At half dose, the drug plus administration costs is $16,500. Insurance sometimes covers some or all of the administration costs. If all administration costs are covered, the drug is $14,400 a year at full dose, $7,200 at half dose. In other words, the costs for the drug can vary from $7,200 a year to $24,000 a year, a truly gargantuan range.

    Why is ampligen in the "XMRV treatment" section? Well although Peterson has left the XMRV bandwagon, he did tell me once that ampligen kills XMRV in the test tube. Whether or not XMRV is the cause of ME/CFS, if it kills a retrovirus in the test tube, who knows how many retroviruses it can kill. HEB did retroactive blood analyses on its trial patients, and in those patients whose blood was positive for XMRV, they don't seem to be able to find XMRV anymore post-ampligen. It certainly has a different mechanism as ARVs but I would think the end result is more similar than people think. People often criticize ampligen for being a drug that only works while you're on it, but I'm curious what the rate of relapse is compared to AIDS patients that have to stop taking ARVs abruptly.

    In my opinion, in some patients' cases ampligen seems to make more sense than ARVs as monotherapy for a retrovirus because ARVs don't dampen inflammation. Very few ME/CFS patients don't have highly elevated C4a, for example. In fact ARVs increases c4a, tgf-beta1 and perhaps other cytokines and chemokines at first due to IRIS. Looking at the GcMaf picture, IRIS in and of itself seems capable of turning initial progress into relapse, and we shouldn't assume it's automatically a good thing. No medication seems capable of addressing this inflammation consistently. There is some anecdotal basis for LDN and actos, but I'm taking LDN and that hasn't kept my inflammation completely at bay and I'm not even on any pathogen-killers at the moment. Few patients tolerate actos. The proinflammatory and antiinflammatory mix of ampligen is perhaps its biggest appeal and perhaps why it is the lone consistent bright spot in the history of ME/CFS pharmaceuticals. It activates NK cells, rnase-L, interferon, etc, and it dampens inflammatory cytokines (and I wonder if it does the same to other markers like c4a). No other therapy seems to do this. Of course, I still think that combining ARVs (the right ones, which I don't think exist yet) and ampligen in a clinical trial would be the ideal way to go, but that's a pipe dream at the moment.

    I would love to have this thread be the ampligen version of the gcmaf thread in cahoots with the ampligen spreadsheet. There are scattered reports everywhere, but it benefits all of us when we have one centralized location to discuss treatment results. The GcMaf thread and spreadsheet have been imminently helpful for many of us to make an informed decision on whether to try GcMaf. If there comes a day when the half dose of ampligen becomes standard and administration costs are covered, a lot more patients will be able to afford it and we will have a much better idea of how it compares with the success rate of other medications. At $7,200 it wouldn't be that much more than taking ARVs or GcMAF for a year, and (just for the sake of comparison) after you factor in the travel costs to see KDM it might actually be less.

    Again, here is the link to the spreadsheet: tinyurl.com/3zly3ks
     
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Thanks for opening this thread. I looked into whether my insurance would cover Ampligen, and they do not, and I supposedly have good insurance! I wonder which companies actually cover it?

    GG
     
  3. LaurelW

    LaurelW Senior Member

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    No insurance company covers it since it hasn't been approved by the FDA, but some companies will pay for the infusion costs.

    Thanks for the informative post, Joey.
     
  4. Navid

    Navid Senior Member

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    great post joey...thanks.


    we need to see more docs in more locales offering the trial also. since most of us do not have the option of relocating for the drug treatment. i have heard that hemisperix is open to starting more trials with more docs...hope that day comes sooner rather than later.
     
  5. mojoey

    mojoey Senior Member

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    hey ggingues,

    Yeah I'm sure no insurance company, private or public, will pay for the drug right now. I was only referring to the administrative cost, which is no small potato at $9300 a year.
     
  6. mojoey

    mojoey Senior Member

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  7. LaurelW

    LaurelW Senior Member

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    The administrative cost actually varies from doctor to doctor. I know my doctor doesn't charge as much as the new guy in the Bay Area that's trying to get started.
     
  8. Daffodil

    Daffodil Senior Member

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    i wish we had a better idea of how exactly ampligen works. i have heard reports of some people staying well for years after stopping the drug...and some have never gotten sick again, though this must be rare.

    it must have a large affect on provirus, whereas ARV's do not.
     
  9. garcia

    garcia Aristocrat Extraordinaire

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    Many thanks for starting this thread & the spreadsheet Joey!

    If anyone in the London area (UK) is interested in ampligen then please contact me. If there are enough of us who are interested it might be worthwhile approaching a London doctor and getting them to sign up to the trial.

    It is absolutely shameful that ampligen is not available anywhere in Europe. London would be a good choice as it is the largest city in Europe, so would benefit the most patients potentially.
     
  10. mojoey

    mojoey Senior Member

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    Daffodil im guessing the difference is in the immune modulating properties. Ampligen shifts the immune system, and i'm thinking in some patients the shift is long-lasting. ME/CFS docs always talk about how if we could get th1 dominant again, maybe our immune systems can keep the viruses in check. I would think that can apply to retroviruses as well if you get the viral load low enough.

    I kind of doubt ampligen has a direct effect on provirus. That usually requires very specific low dose chemo or the introduction of very specific nucleic acid sequences to mess up proviral replication. I think it's more to do with th1 shift
     
  11. vli

    vli

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    Garcia, I am definitely interested in doing this, but my question is how do you intend to go about it. Do you already have a particular doctor in mind, do you know of any who are open-minded enough to consider it?
     
  12. mojoey

    mojoey Senior Member

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    Hey vli and Garcia,

    I just want to give you guys a heads up that if the process for setting this up in UK is anything like it's been in the past, you might be in for quite the headache. There's a reason so few doctors have been able to get this going in the US...the doctor at the very least should be IRB approved to run clinical trials, and should be ready to face some major paperwork. Most doctors are not willing to do all this beyond their current commitments. Even when they are, it's no guarantee. I tried setting up a trial with a local doctor in the US, and Hemispherex (HEB) didn't get around to doing this even though they said they were willing to work with me and I could've easily recruited more than 2 patients to do it at this location.

    I would find the doctor that's profusely willing to do this, and then round up a list (as long as possible) with names of people serious about doing this before approaching HEB.
     
  13. mojoey

    mojoey Senior Member

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    There is a form for interested docs to get the application process rolling. I will try to get permission to distribute this form, and if i do i'll PDF it.
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Is there going to be alot of people here who are going to be able to afford ampligen to give us good range of experiences??
     
  15. Daffodil

    Daffodil Senior Member

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    joey is right. hemispherex was trying to get a trial site going in canada in the 90's but no doctor would participate. the drug has been available here since 1996 but no one will prescribe it!
     
  16. garcia

    garcia Aristocrat Extraordinaire

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    Hi Vli, I don't have any doc in mind at the moment. Just wanted to get an idea if others were potentially interested.

    Many thanks for the responses Joey. From what you and Daffodil are saying, it will not be a quick or easy process. Would be really interested to see that document Joey.

    Many thanks!
    garcia.
     
  17. mojoey

    mojoey Senior Member

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    Hey Heapsreal,

    I think this depends on a few things:

    1) how willing doctors and HEB are willing to offer the drug at half dose

    2) how many doctors are willing to go through the paperwork required to run this trial and accordingly, how willing HEB is to work with these doctors to make the process more standardized and efficient

    As I alluded to above, if insurance covers administration costs and the drug is offered at half dose, the bottom limit for annual cost would $7200. Given how many patients we've seen go on gcmaf which is similarly priced, I would think this price point would be accessible to a substantial number of patients.
     
  18. ukxmrv

    ukxmrv Senior Member

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    Is Dr Enlander using Ampligin?

    He does visit the UK some times. With other USA doctors and drugs (IVIG in one case) I had to get a prescription from one registered to do this in the UK, then buy the drug. I used a company healthcare@home to do the infusions.

    Just brainstorming here.

    We were going to get Ampligin here in about 1999 but it all went wrong. The cost was going to be either UK1000 or 2000 a month but I'd need to go back on some old posts to see which one.
     
  19. mojoey

    mojoey Senior Member

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    Dr. Enlander is. A friend of mine is seeing him soon, and I think he'll be asking Dr. E about the half dosage.
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    if it makes its way to australia, i will be definately chasing it up.

    cheers!!!
     

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