Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 In a message dated 10/13/99 1:16:34 PM Eastern Daylight Time, mgrahn@... writes: << But I find it immensely frustrating that we can't get more people tested > for the Suhadolnik Factor (the RnaseL defect). >> Those who are in the worst place (the most severe category) in this illness do not have an elevated RNase defect. It levels itself out over the years, so certainly is not a marker if you have to leave out those most severe cases. It is highest only during the first years (1-6 or so) of the illness, moderate during the second phase, according to Cheney, and normal at stage 3. Gail Kansky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 Schweitzer wrote: But I find it immensely frustrating that we can't get more people tested > for the Suhadolnik Factor (the RnaseL defect). I think we know enough > now that it's very important for patients to KNOW whether they have it, > or don't, in determining which KIND of CFS/M.E./fibromyalgia combination > they have. , Do you have a ballpark idea of what it costs to get this test done??? I agree it would help if we could even BEGIN to classify patients in categories that would help determine success of possible treatments. Tired of the whole crap-shoot approach to our illness. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 >It is highest only during the first years (1-6 or so) of the illness, >>moderate during the second phase, according to Cheney, and normal at >>stage 3. >>Gail Kansky > Hi, Does this mean that ampligen would not help at this point, or does the body stop making antibodies as in late lyme? Thanks, CHristie >In a message dated 10/13/99 1:16:34 PM Eastern Daylight Time, >mgrahn@... writes: > ><< But I find it immensely frustrating that we can't get more people tested > > > for the Suhadolnik Factor (the RnaseL defect). >> >Those who are in the worst place (the most severe category) in this illness >do not have an elevated RNase defect. It levels itself out over the years, >so certainly is not a marker if you have to leave out those most severe >cases. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 Marcia asked how much Ampligen testing costs. I think Dr. Mazlen on Long Island is charging about $350. I don't know what the labs in New Jersey charge. I had mine done for free (thank heavens). The cost to the lab varies considerably depending on how many people have it done. It's most cost-efficient to do 5 or 6 at a time -- the blood should be drawn within four hours of having it spun down, so you all need to go get your blood drawn together, then either take it to the lab, or have it taken to the lab (the first way is cheaper ...) right away. The machine they use to spin the blood down can take several vials at the same time, so it makes the most sense to have enough to pack the machine full when you run it. All it takes is three green-topped 10 ml. tubes. After they spin the blood down into pellets (and you have to find a place that will do that, though more and more places are opening up), they have to freeze it and ship it to Belgium so Redlabs can do the testing. There is NO place in the United States for commercial testing -- Suhadolnik has the only place that tests for the 37kDA, and he's tied up with NIH studies (among other things, the stoopoid NIH is making him compare CFS patients with depressed patients ...) At this point, I get confused. I was told by Dr. Ablashi, who drew my blood, that it's best to send ten at once (I don't know why). So you would want to have two batches of 5. Others have quoted different figures. One lab in New Jersey had 25 samples and was STILL holding on to them! I don't know why the number of samples sent abroad reduces the costs -- maybe it has to do with the cost of dry ice. Dr. Ablashi said if I could arrange for two groups of 5, he would charge about $350 apiece. I've never been able to pull it off, though. Getting two groups of 5 PWC's in the same place at the same time for the same test is like herding cats. BUT -- for a STUDY -- that strikes me as the baseline figure -- so to have 20 people tested, you'd need $7,000. I'd love to see a random sample of 20 patients with M.E. tested, for example. Schweitzer Quote Link to comment Share on other sites More sharing options...
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