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Obtaining the ARVs now/soon?

Discussion in 'XMRV Testing, Treatment and Transmission' started by SickOfSickness, Sep 12, 2010.

  1. SickOfSickness

    SickOfSickness Senior Member

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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.
     
  2. SickOfSickness

    SickOfSickness Senior Member

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    Also what if a small bunch of us did go travel together to a doc. And we would be an informal "trial" for this doc. And I realize it's experimental and would be thankful to any doc who would help us. Going in a group might save a little money on travel costs or somehow save, and certainly I would like the moral support.

    Or maybe I could get into a real trial, just need the willingness to pay for travel expenses? That is probably nearly impossible to get into a trial and get the three meds I want? I want what Dr Deckoff Jones is recommending.

    And on one of her blog posts, someone commented that he has gay friends on ARVs for HIV. He said he plans to try to get ARVs through his friends, I am a little curious about that route or any route that is possible.
     
  3. Daffodil

    Daffodil Senior Member

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    sickof...the only doc i know of who is prescribing these for sure is dr. brewer in kansas. i bet there are many others, though.
     
  4. Esther12

    Esther12 Senior Member

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    Emotionally, I think it's a bad idea to start planning things on the presumption that we're going to have access to a nice ARV treatment program anytime soon. It just leaves too much room for disappointment.

    Hopefully we'll all be feeling a lot better in 12 months time.... there's a real chance that we could not have a useful treatment for decades, or that XMRV won't even be causal for CFS. There have been a few positive stories for ARV's floating about, a few less positive ones.

    At the moment, I'd just love to have some understanding as to why I'm ill. I'm trying to keep hopes about treatments restricted. I spent the first 4 years of my illness expecting to be better soon, and I don't want to go back to deluding myself.
     
  5. SickOfSickness

    SickOfSickness Senior Member

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    Esther well overall I agree but this thread should be about how, for the people who want to. I have been sick for over 25 years, since I was a kid, and emotionally I think I can handle it. I believe that Dr Deckoff Jones is doing things a little bit differently than most others who are trying ARVs and it makes a difference. If I tried for a couple months and had zero improvement or bad effects, at least I tried. I believe it would be apparent in just months.
     
  6. mojoey

    mojoey Senior Member

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    Dr jones and her daughter's experience day they're the only patients they know of on all 3 drugs. I'm sure there are more, and we need to hear from them if we're gonna judge efficacy with anecdotes. It's bad enough to rely completely on anecdotes; it's worse to rely completely on a sample size of 2 from the same family with a similar set if genetic predispositions.
     
  7. Esther12

    Esther12 Senior Member

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    I understand.

    I just always like to add a note of caution to these threads - for myself as much as anyone else.
     
  8. SickOfSickness

    SickOfSickness Senior Member

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    Esther, that's cool :)

    Yes we need to hear from them, but I could BE one of them. If I can get the drugs covered by insurance I guess I am willing to be a guinea pig and report back to everyone. There are many others like me but they would need the drugs free or cheap most likely. Some of them might be able to afford them just fine, but aren't finding a doc to prescribe. I am lucky in that right now I still have good private health insurance, but if I remain unable to work for 6 or 12 or 18 more months I may not have it anymore. The community needs willing people who will also blog.

    The only bad thing is that I have a lot of allergies and MCS (though not extremely bad as some people?) so I might be reporting too many side effects compared to what others would experience. Well another bad thing is I've been sick so long. But I am not "as sick" as some are and because of my MCS I feel I get some positive effects faster than other people?! Speaking of which, I normally can get by on half the doses that other people can, for almost any meds, so the drugs could cost me less if I stretch a month's supply to two. Obviously I don't want to do this if it will make treatment not work but I am low body weight as well and doses are calculated to be effective for average adult males, so that is another reason why I often need 1/4 doses. I am often a 70 on Karnofsky, if I try to stay less active. 60 on bad days.
     
  9. SickOfSickness

    SickOfSickness Senior Member

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    I believe Dr Deckoff Jones said she only knew one other person on them? In a recent blog post she encouraged people again to write if they were on them. Someone commented that they were on them, but these people aren't sharing much?

    In fact I think as a community we should be willing to fund individuals to go try it as long as they report back? Tens of thousands of us would love to hear from just one or two or three more ARV trial patients, so why not take matters into our own hands more directly. Say ten thousand of us pay $4 each, and that's enough to get 15 or 20 volunteers onto the same ARV combo that Dr D-J is on for the first 4 months, then if it's going well in 4 months, the volunteers could start working and paying for their treatment, or we could be grateful and some of us donate another $2 or $4.

    Especially when you consider there are so many volunteers, that is a lot of info. Very valuable info which can help convince more docs to start prescribing, and make it more accessible to people in more states. If we had just 10 more good stories like Dr D-J then you would have thousands of patients who would volunteer next time, if you wanted more guinea pigs.

    I am also a little worried that most volunteers at the start are going to be the sickest people and the oldest people. So the results could be skewed and I think we need more younger ones who are not bedridden. And even if they prove later that XMRV is not causative, who cares if it can make your functioning go way up, so you can work full time in 10 months after beginning.
     
  10. SickOfSickness

    SickOfSickness Senior Member

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    Also as I said above, since I have insurance maybe I could be on these ARVs for only around $300-$500 per month? Including the travel and everything else. Plus one time cost to get the VIPDx test ($200-$500). Someone tell me how realistic that is. To get insurance to cover it if I saw Dr Brewer or another willing doc.

    It seems like clear gains can be seen within 4 months max. So in total only $1400-$2500, to possibly achieve similar results to what Dr D-J and her daughter now have. That is really cheap! They are only month 6 it seems but had major progress by month 4? And as I said maybe I am less sick so quicker?

    Would the docs be less likely to prescribe to me since I am younger and not as sick? I am very ill but compared to other CFS/ME I am average?

    I can manage to travel. I will travel within reason, by car or air. Some cities are cheap to fly to if it's a hub city.

    And I would need more details on what else I would need to pay for? Dr D-J says they get monthly bloodwork, with the strong implication that monthly bloodwork is "just in case" to be extra safe and is overkill really. What kind of bloodwork, and would my insurance cover it if Dr Brewer or other doc was ordering it? I am assuming they would cover it (80% or 100%).

    One problem is I'd need a doc who was in-network with my insurance plan otherwise it would be so expensive. And for the labs to be in-network too (not counting VipDX).
     
  11. Wonko

    Wonko Senior Member

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    I think your funding idea is brillant and would happily contribute, if only at the level you suggested due to having extremely limited funds myself - unfortunately it wont work unless you can convince at least another 9999 people the same way (your figures not mine) - that and some organisation are all thats required

    it's a pity it probably wont happen as with the current lack of any official funding unofficial trials seem a logical way to go
     
  12. SickOfSickness

    SickOfSickness Senior Member

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    Well 20 people contribute $50, 60 contribute $30, 200 contribute $20, 700 contribute $10 and that could be enough for 5-6 volunteers? And volunteers could still be made to cover 1/4 or 1/2 of the costs themselves, and preference to those who have a doc near them already. So less than 1000 donors and we get daily blogs for months from 10 volunteers. The $10 donation is only like donating $2.50 a month for 4 months. Maybe less if a doc can help us for free, if we qualify for Merck's low income program. Anyway I doubt my insurance would cover it at this point... that's a problem.
     
  13. julius

    julius Watchoo lookin' at?

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    Then those who can get back to work agree to contribute, say $100-$200/month back into the fund once they are working. That new money could go to more 'subjects', who in turn make the same agreement.

    It would work like a pyramid, but not for financial profit of course.
     
  14. xrayspex

    xrayspex Senior Member

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    I would be open to helping fund if someone has energy and organization to devise the pyramid scheme :)
     
  15. leaves

    leaves Senior Member

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    lol. it is an awesome idea but people at this time we have less evidence of people that are helped with the ARV (dr Deckoff and daughter) as not helped (Sue and randalbond and Jimbob). So I think it is a rather risky investment. If it is true that XMRV is a slowly replicating virus it is so different from hiv. HIV causes disease by replicating, therefore ARV's mostly target the replication. If xmrv is spread by cell division, and causes disease by viral proteins (for example) then ARV's are kinda useless. Right?(
     
  16. xrayspex

    xrayspex Senior Member

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    leaves, I don't understand enough about bio to know why that is true if you are correct....what is the laymen's explanation?
     
  17. Daffodil

    Daffodil Senior Member

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    i wonder if we will need interferon in addition to ARV's. HTLV-1 is a slow virus and integrated provoris is the problem there, too.....and they use AZT+interferon for HTLV-1-associated leukemia.

    also, ampligen works in CFS and that is an interferon inducer
     
  18. guest

    guest Guest

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    Would be nice if Bill Gates and his foundation could help on this one :)
     
  19. pete

    pete pete

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    Hi, I am new so please excuse lack of knowledge. Am I right in thinking that only the xmrv+ people have benefited from ARVs and these when all 3 drugs used as Dr.Jamie and Ali ? Maybe those with MLVs ( Daffodil ?) need a slightly different protocol? Is there any kind of record of these different approaches ? I thought the 2nd fundraiser video came pretty close to an endorsement of Dr. J's approach and Judy's silence on the treatment was significant at the Q and A. If she said any thing she'd be knocked down by her peers. Has anybody ever found Isentress on a perscription free retailer site? I haven't. The others seem cheap enough and available. Sorry about all the questions ! I have been humbled reading about the courage of many of you , Pete.
     
  20. SickOfSickness

    SickOfSickness Senior Member

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    Isentress doesn't come in generic yet, so that's why it's so much more expensive. A website says that it won't be generic for at least 12 more years! :(
     

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