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Obtaining the ARVs now/soon? And can't we run our own unofficial trials!?
(See later posts in this thread re: raising funds to run "trials" and collect more anecdotal evidence.)
Hypothetically I am trying to imagine how soon I could start ARVs so I can plan certain things in my life. So far I did not get the XMRV testing done. Hopefully I test positive.
Is it very, very hard to find any doc in the country to prescribe them? I bet it could be done if I were willing to travel to the one of the few docs who were willing, but that most likely increases my cost a lot. Well, plane tickets or car and hotel are not bad if it's only one or two visits, it's expensive if going all the time.
I believe insurance would cover them now or in the next months, if prescribed off label and if I showed some improvement and was XMRV+? Dr Deckoff-Jones says this apparently in an older blog entry. http://treatingxmrv.blogspot.com/2010/08/random-thoughts.html Or is she saying only that it WILL get insurance covered LATER once there are certified labs...!?
I can't easily do it even WITH insurance (because my copays would apparently run me $250/mo for the drugs and more for labs and office visits, as I pay 20% for medications), but I can't afford to wait either. If I could get results like they are, I could start working a job in just 4-6 months from now, and start being able to take care of myself way more.
Also I want to know my options because it can alter my decisions. Maybe I should be trying very hard to get onto an insurance plan which has $15 flat copays, then my ARVs would cost me only $45? If I know it will save $200 a month that can make a difference in how I do things in my life.
Any money to start this promising treatment is worth it, and I would pay for it without insurance if I could, but I can't. But you know how the saying goes, some things are worth begging, borrowing, or stealing for and maybe I can beg or get something to happen, if I knew that I could get it and money was the only thing in the way. Especially if I started and after 2 weeks or 3 weeks or 6 weeks I was showing improvement, then I may be able to convince someone to just help me and that I would be able to start working in months. Or convince myself that it's worth doing whatever it takes. Sell my car and fridge and clothing, so I can buy the drugs. Dr Deckoff Jones said there is a compassionate use program by Merck, but perhaps it still costs hundreds?
Yes I should be patient, but Dr Deckoff Jones is even saying they have essentially no side effects besides right at the start, and the problem is I can't afford to wait as I said. Every month I am going without a job and without the ability to easily do errands and things, is really putting me farther down into the hole. I am far enough. I don't mind waiting that much, except for the problem of sinking financially.
If I cannot do get the ARVs I will consider the natural ARV route but would want to get the XMRV test before taking natural ARVs. I feel that they would still cost a lot and effectiveness would be not nearly as good. It would be like shoveling your driveway with a kids' shovel instead of a real shovel? And the snow keeps falling so you're not getting ahead by a lot.
Anyone please feel free to PM me if you have any thoughts on this.
(See later posts in this thread re: raising funds to run "trials" and collect more anecdotal evidence.)
Hypothetically I am trying to imagine how soon I could start ARVs so I can plan certain things in my life. So far I did not get the XMRV testing done. Hopefully I test positive.
Is it very, very hard to find any doc in the country to prescribe them? I bet it could be done if I were willing to travel to the one of the few docs who were willing, but that most likely increases my cost a lot. Well, plane tickets or car and hotel are not bad if it's only one or two visits, it's expensive if going all the time.
I believe insurance would cover them now or in the next months, if prescribed off label and if I showed some improvement and was XMRV+? Dr Deckoff-Jones says this apparently in an older blog entry. http://treatingxmrv.blogspot.com/2010/08/random-thoughts.html Or is she saying only that it WILL get insurance covered LATER once there are certified labs...!?
I can't easily do it even WITH insurance (because my copays would apparently run me $250/mo for the drugs and more for labs and office visits, as I pay 20% for medications), but I can't afford to wait either. If I could get results like they are, I could start working a job in just 4-6 months from now, and start being able to take care of myself way more.
Also I want to know my options because it can alter my decisions. Maybe I should be trying very hard to get onto an insurance plan which has $15 flat copays, then my ARVs would cost me only $45? If I know it will save $200 a month that can make a difference in how I do things in my life.
Any money to start this promising treatment is worth it, and I would pay for it without insurance if I could, but I can't. But you know how the saying goes, some things are worth begging, borrowing, or stealing for and maybe I can beg or get something to happen, if I knew that I could get it and money was the only thing in the way. Especially if I started and after 2 weeks or 3 weeks or 6 weeks I was showing improvement, then I may be able to convince someone to just help me and that I would be able to start working in months. Or convince myself that it's worth doing whatever it takes. Sell my car and fridge and clothing, so I can buy the drugs. Dr Deckoff Jones said there is a compassionate use program by Merck, but perhaps it still costs hundreds?
Yes I should be patient, but Dr Deckoff Jones is even saying they have essentially no side effects besides right at the start, and the problem is I can't afford to wait as I said. Every month I am going without a job and without the ability to easily do errands and things, is really putting me farther down into the hole. I am far enough. I don't mind waiting that much, except for the problem of sinking financially.
If I cannot do get the ARVs I will consider the natural ARV route but would want to get the XMRV test before taking natural ARVs. I feel that they would still cost a lot and effectiveness would be not nearly as good. It would be like shoveling your driveway with a kids' shovel instead of a real shovel? And the snow keeps falling so you're not getting ahead by a lot.
Anyone please feel free to PM me if you have any thoughts on this.