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
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