Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 Will you know whether you will progress on Nexavir in the first use of it, or is it something that will take a period time to see how one fares? and is so, for how long? Is it like Transfer Factor in its effects? Thanks... Amelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 Dear Amelia, every case of CFS is different from the other even if there are patterns that are similar. Some people benefitted a lot from using Nexavir (never recovered though), some others like me did not notice any change if not a worsening of the symptoms. The first use for me has been a nightmare... lot of anxiety, bad sensations... then, lowering the doses, it settled a bit. But after three months I discontinued it as I had no improvements whatsoever. Take care. Massimo Nexavir? Will you know whether you will progress on Nexavir in the first use of it, or is it something that will take a period time to see how one fares? and is so, for how long? Is it like Transfer Factor in its effects? Thanks... Amelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 Hi I've been on the Kutapressin site (old name for nexavir) for several years and each person has a different time period before the treatment takes effect. However I have come to the conclusion in reading a lot of e-mails , the original paper (2ml per day)and the patent that if one does not see any benefit after about 40 days then you are unlikely to. I may try this in the next couple of months - I am recovering from something else first so -one thing at a time. take care Roy > > Dear Amelia, > > every case of CFS is different from the other even if there are patterns that are similar. Some people benefitted a lot from using Nexavir (never recovered though), some others like me did not notice any change if not a worsening of the symptoms. > > The first use for me has been a nightmare... lot of anxiety, bad sensations... then, lowering the doses, it settled a bit. But after three months I discontinued it as I had no improvements whatsoever. > > Take care. > > Massimo > > Nexavir? > > > Will you know whether you will progress on Nexavir in the first use of > it, or is it something that will take a period time to see how one > fares? and is so, for how long? Is it like Transfer Factor in its > effects? > > Thanks... > Amelia > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 There is an important issue concerning Nexavir though. It is not a cure, it works for some people relieving symptoms, but it won't cure your CFS for good. Also, be aware that from studies shown by Dr. Enlander, it is clear that using 2ml. everyday and using the same amount of the medicine weekly does not change the results. Massimo Nexavir? > > > Will you know whether you will progress on Nexavir in the first use of > it, or is it something that will take a period time to see how one > fares? and is so, for how long? Is it like Transfer Factor in its > effects? > > Thanks... > Amelia > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 > > Hi > > I've been on the Kutapressin site (old name for nexavir) for several > years and each person has a different time period before the > treatment takes effect. However I have come to the conclusion in > reading a lot of e-mails , the original paper (2ml per day)and the > patent that if one does not see any benefit after about 40 days then > you are unlikely to. > > I may try this in the next couple of months - I am recovering from > something else first so -one thing at a time. > > take care > Roy So you've taken it for years with no effect? Why another trial? -chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 I have low cardiac output...therefore, I am, especially, interested in Dr. Cheney's research, indicating that it may help the cardiac issues, in tandem with Hawthorn..I am on all the supplements, recommended by Myhill, which has helped my cardiac response. Has anyone noticed a change in that arena? Thanks to all who have given me feedback! > > Will you know whether you will progress on Nexavir in the first use of > it, or is it something that will take a period time to see how one > fares? and is so, for how long? Is it like Transfer Factor in its > effects? > > Thanks... > Amelia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 There is no evidence whatsoever on heart benefits coming from Nexavir. What Cheney says are only suppositions, there is NO scientific evidence that this medicine helps cardiac outputs unless your heart dysfunctions are virus related, therefore addressing the virus problem you may benefit from using Nexavir. Massimo Re: Nexavir? I have low cardiac output...therefore, I am, especially, interested in Dr. Cheney's research, indicating that it may help the cardiac issues, in tandem with Hawthorn..I am on all the supplements, recommended by Myhill, which has helped my cardiac response. Has anyone noticed a change in that arena? Thanks to all who have given me feedback! > > Will you know whether you will progress on Nexavir in the first use of > it, or is it something that will take a period time to see how one > fares? and is so, for how long? Is it like Transfer Factor in its > effects? > > Thanks... > Amelia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 I don't think you can call Cheney's observations mere suppositions, because he is tracking different cohorts of patients taking different things, but probably everyone is on Nexavir, I don't know for sure, and he had two heart machines in his office that he tests patients on, so he would know if they were being helped over time by his regimens or not. From what he told me, he's seeing improvement in people even on the current basic regimen, which includes Nexavir. It's not normalcy yet, however. He considers Nexavir one of the four most important things to take. Helen > > I have low cardiac output...therefore, I am, especially, interested in > Dr. Cheney's research, indicating that it may help the cardiac issues, > in tandem with Hawthorn..I am on all the supplements, recommended by > Myhill, which has helped my cardiac response. > > Has anyone noticed a change in that arena? > > Thanks to all who have given me feedback! > > > > > Will you know whether you will progress on Nexavir in the first use > of > > it, or is it something that will take a period time to see how one > > fares? and is so, for how long? Is it like Transfer Factor in its > > effects? > > > > Thanks... > > Amelia > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 HElen, what are the other three? Are you a patient of Cheney? a Carnes > > > I don't think you can call Cheney's observations mere suppositions, > because he is tracking different cohorts of patients taking different > things, but probably everyone is on Nexavir, I don't know for sure, > and he had two heart machines in his office that he tests patients > on, so he would know if they were being helped over time by his > regimens or not. From what he told me, he's seeing improvement in > people even on the current basic regimen, which includes Nexavir. > It's not normalcy yet, however. He considers Nexavir one of the four > most important things to take. > > Helen > > > > > > I have low cardiac output...therefore, I am, especially, > interested in > > Dr. Cheney's research, indicating that it may help the cardiac > issues, > > in tandem with Hawthorn..I am on all the supplements, recommended > by > > Myhill, which has helped my cardiac response. > > > > Has anyone noticed a change in that arena? > > > > Thanks to all who have given me feedback! > > > > > > > > Will you know whether you will progress on Nexavir in the first > use > > of > > > it, or is it something that will take a period time to see how > one > > > fares? and is so, for how long? Is it like Transfer Factor in > its > > > effects? > > > > > > Thanks... > > > Amelia > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 I am sorry Helen but nothing has been officially published by him in terms of results with Nexavir. If he is so sure that this medicine does make a difference, he should be able to present these findings scientifically with lab findings and test results. If one patient feels better but without any evidence, and then he falls again ill without taking it, this to me means that this is not a cure at all, just a way to feel better, which of course is very improtant. But if Cheney thinks that heart functions improve with this medicine, then he should be able to bring evidence to this statement. and evidence is not only feelings of his patients, but also some data confirming it. If he considers this medicine as one of the four most important medicines to take, well, that's his opinion, far from being the right protocol to be considered. Infact, he also considers NOT GOOD taking antibiotics, at all. But so far there have been some reports that in many cases antibiotics have helped many patients with stealth infections of different types. I am not against this medicine, please have it very clear, I took it myself for a time, but I am just saying that it is not good for everybody and that it is far from being a cure, at least a definitive cure. NOBODY has ever recovered using it. If I am wrong and you know for sure of people recovering, please let me know, I am very curios. Massimo Re: Nexavir? I don't think you can call Cheney's observations mere suppositions, because he is tracking different cohorts of patients taking different things, but probably everyone is on Nexavir, I don't know for sure, and he had two heart machines in his office that he tests patients on, so he would know if they were being helped over time by his regimens or not. From what he told me, he's seeing improvement in people even on the current basic regimen, which includes Nexavir. It's not normalcy yet, however. He considers Nexavir one of the four most important things to take. Helen > > I have low cardiac output...therefore, I am, especially, interested in > Dr. Cheney's research, indicating that it may help the cardiac issues, > in tandem with Hawthorn..I am on all the supplements, recommended by > Myhill, which has helped my cardiac response. > > Has anyone noticed a change in that arena? > > Thanks to all who have given me feedback! > > > > > Will you know whether you will progress on Nexavir in the first use > of > > it, or is it something that will take a period time to see how one > > fares? and is so, for how long? Is it like Transfer Factor in its > > effects? > > > > Thanks... > > Amelia > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Yes, I am. B12 (injectable) Magnesium sulfate (injectable) and hawthorn from Standard Process Labs. > > > > > > I have low cardiac output...therefore, I am, especially, > > interested in > > > Dr. Cheney's research, indicating that it may help the cardiac > > issues, > > > in tandem with Hawthorn..I am on all the supplements, > recommended > > by > > > Myhill, which has helped my cardiac response. > > > > > > Has anyone noticed a change in that arena? > > > > > > Thanks to all who have given me feedback! > > > > > > > > > > > Will you know whether you will progress on Nexavir in the > first > > use > > > of > > > > it, or is it something that will take a period time to see > how > > one > > > > fares? and is so, for how long? Is it like Transfer Factor in > > its > > > > effects? > > > > > > > > Thanks... > > > > Amelia > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 He's working on it, is conducting a trial. I'm sure he'll publish the results sooner or later. Unfortunately these things take time. But if you get the DVDs from the Dallas Ft Worth group, he does talk about statistics in regard to patients taking Nexavir and other things on his current protocol. It's something to be taken in concert with other things, just taking it alone wouldn't be good enough. Helen > > > > I have low cardiac output...therefore, I am, especially, > interested in > > Dr. Cheney's research, indicating that it may help the cardiac > issues, > > in tandem with Hawthorn..I am on all the supplements, recommended > by > > Myhill, which has helped my cardiac response. > > > > Has anyone noticed a change in that arena? > > > > Thanks to all who have given me feedback! > > > > > > > > Will you know whether you will progress on Nexavir in the first > use > > of > > > it, or is it something that will take a period time to see how > one > > > fares? and is so, for how long? Is it like Transfer Factor in > its > > > effects? > > > > > > Thanks... > > > Amelia > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Helen, Kutapressin has been on the market since 1920, and it's been widely used for CFS patients for years. But again, as Cheney said, he uses it only to those who present reactivated titres to viruses. There are some other doctors, like De Meirleir, that prescribe it even lacking of any reactivated virus but only with an activation of the Rnase L, which to him represents the presence of a virus or a bacterial infection. He prescribed it to me, I used it for a time without any visible results. I know some people benefit from it, in lowering their symptoms as I said, nothing similar to a cure. Cheers, Massimo Re: Nexavir? He's working on it, is conducting a trial. I'm sure he'll publish the results sooner or later. Unfortunately these things take time. But if you get the DVDs from the Dallas Ft Worth group, he does talk about statistics in regard to patients taking Nexavir and other things on his current protocol. It's something to be taken in concert with other things, just taking it alone wouldn't be good enough. Helen > > > > I have low cardiac output...therefore, I am, especially, > interested in > > Dr. Cheney's research, indicating that it may help the cardiac > issues, > > in tandem with Hawthorn..I am on all the supplements, recommended > by > > Myhill, which has helped my cardiac response. > > > > Has anyone noticed a change in that arena? > > > > Thanks to all who have given me feedback! > > > > > > > > Will you know whether you will progress on Nexavir in the first > use > > of > > > it, or is it something that will take a period time to see how > one > > > fares? and is so, for how long? Is it like Transfer Factor in > its > > > effects? > > > > > > Thanks... > > > Amelia > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Massimo, How long have you had this disease? You sound like a young man, who has not had a lot of experience. Some of us, myself, included have had to wait for 20-30 years, already, for some science or evidence to emerge in these diseases...at times, I believe there will not be a CURE, maybe not even a substantial improvement, in my lifetime. One cannot wait forever..we have a finite time period on earth.. Being a Master's Level College graduate, I would like to see scientific evidence, however, as Helen indicates this takes time, and whatever, improvement I can make, I would like to seize the opportunity. Almost my entire life has been wasted by these diseases. Amelia > > Will you know whether you will progress on Nexavir in the first use of > it, or is it something that will take a period time to see how one > fares? and is so, for how long? Is it like Transfer Factor in its > effects? > > Thanks... > Amelia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Dear Amelia, I might not have much experience but I have seen several ex CFS patients recovering completely and fully. Unfortunately none of them was cured by this medicine or by a protocol including it. I have seen people who got healed by antibiotics, by transfer factors, by removing amalgams, some spontaneosly, but none using Nexavir. If you are happy using Nexavir, go on, I am not telling you that it's useles. I simply like to think that there is a cure or there will be, and I am sure that Nexavir is not it. But again, if you experience improvements usign it, you MUST use it. It would be silly the contrary. If you don't see any change, then it would be silly going on with this medicine. There is no scientific evidence on Nexavir trials, only suppositions: Cheney once wrote: " I think that Kutapressin works like a light form of Ampligen " . Wow, so he thinks... but he does not know... and I would never use Ampligen... therefore I don't even want to try a light form of it. He did not explain why a pig liver extract should work like Ampligen which acts on the RNA... he said that presumebly it shifts Th2 back to Th1... is that been tested or he simply thinks? I am sure that this medicine does have some good effects on some patients, but I am also sure that it is not clear who can benefit from it and why. Ciao ciao. Massimo Re: Nexavir? Massimo, How long have you had this disease? You sound like a young man, who has not had a lot of experience. Some of us, myself, included have had to wait for 20-30 years, already, for some science or evidence to emerge in these diseases...at times, I believe there will not be a CURE, maybe not even a substantial improvement, in my lifetime. One cannot wait forever..we have a finite time period on earth.. Being a Master's Level College graduate, I would like to see scientific evidence, however, as Helen indicates this takes time, and whatever, improvement I can make, I would like to seize the opportunity. Almost my entire life has been wasted by these diseases. Amelia > > Will you know whether you will progress on Nexavir in the first use of > it, or is it something that will take a period time to see how one > fares? and is so, for how long? Is it like Transfer Factor in its > effects? > > Thanks... > Amelia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 >>>> There is an important issue concerning Nexavir though. It is not a cure <<<< I was wondering what significance this has to you, as opposed to any other treatment on Earth? With possibly minimal exception or subsets, there is thus far, no cure for ME/CFS. Even patients who claim " recovery " , when further questioned, will say they have residual immune, cognitive or other symptoms. They maintain recovery with extensive medicinal supplementation and/or lifestyle management ( not pushing past certain perimeters). I'm not speaking here of Fukuda CFS, which is a variety of conditions. Something that some like to call a wastebasket diagnosis. Nexavir itself is pretty new...I think just since last year. More might be understood by searching under Kutapressin, it's original name many years ago....it was taken off the market for a long time. Last year, I did only a minimal search, and found patients who were clamoring to get back on it, as it had been the best treatment for them. I had not known of, or forgot these dramatic results because I was not paying as much attention, and had no access to Kutapressin. PLUS, in those years, I'm sure I was less impressed since it was " not a cure " . I began it a few months ago, because Dr. Cheney suggested it. I did not even realize it might also be for the heart. (I do have the Diastolic Dysfunction, found with Impedance machine and Echocardiogram, in the Cheney Clinic and the Asheville Hospital.} But, just on my own, I can tell you that if escalated, my heart symptoms calm down every time I use it. Since I'm no longer his patient or being tested, I have no objective data to report. About that, and having official and published studies...I would like those too, but don't hold your breath. There is a long history of the BEST ME/CFS research and researchers being DENIED FUNDING, and Denied Publishing. Like it or believe it, or not, that's the facts. Thus far...decades, right up until now. Dr. Cheney spent the first 5 years of his CFS career " chasing bugs " , and through the second 5 years focusing on Pharmaceuticals. Another 5 on nutrition. He has seen over 5000 ME/CFS patients from 50 countries. So, his opinions about Antibiotics, Antidepressants, and anything else is from continued studying and from that context. This is long enough to see both short and long term effects and damage. It has been known for decades that ME/CFS patients have hypersensitivity, intolerance, allergies and sometimes horrific responses to pharmaceuticals. (Non-pharmaceuticals too...people respond differently) Last year, I got Pneumonia...it was not responding to antibiotics and we were " running out " of any I can tolerate. Not fun, especially with a heart condition. That is a very fragile feeling. I suppose some have the luxury of being angry at a treatment or any one Specialist for not finding " the cure " , or being " incorrect " . I often have become impatient myself, and had many doubts. But, I think this is displaced irritation. It is thanks to the complicated disease itself and the Govts., NIH, CDC, suppression of research and the conglomeration of things under the names ME/CFS that we are not further along and get so confused about the correct path to take. AS years have gone by, with the monstor remaining and ever morphing into new tricks, my priorities are to find healing of all possible; the best prevention of further damage, the best abilities to function daily, and the best quality of life, including actual *thriving* as much as possible. For me, this is by following the work of the longest term Researchers and Clinicians, the longest term patients, and the most severe. With that as my main base (and always returning to them), I venture into other areas, such as work being done on Neurodegenerative diseases, Viruses, Autism, Toxins, Environment. In many ways, I am more fragile and complex now (21 years). I'm in danger of falls and even sudden death. But I have purpose and quality of life in my community, and have not been bedridden for many years. (Bedridden/non-mobile for 20 hours a day for majority of 9 years). At times, I can even think and articulate in conversation lol, and in front of crowds...groups of people, meetings, etc. Thanks for Dr. Enlanders report. I'm not sure what to think of this, due to the dose related (cardiac) response I get. Katrina > > > > Dear Amelia, > > > > every case of CFS is different from the other even if there are > patterns that are similar. Some people benefitted a lot from using > Nexavir (never recovered though), some others like me did not notice > any change if not a worsening of the symptoms. > > > > The first use for me has been a nightmare... lot of anxiety, bad > sensations... then, lowering the doses, it settled a bit. But after > three months I discontinued it as I had no improvements whatsoever. > > > > Take care. > > > > Massimo > > > > Nexavir? > > > > > > Will you know whether you will progress on Nexavir in the first > use of > > it, or is it something that will take a period time to see how > one > > fares? and is so, for how long? Is it like Transfer Factor in its > > effects? > > > > Thanks... > > Amelia > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Katrina, thank you very much for your testimony. But I don't agree on few points: - there are people who recovered without residual immune or cognitive problems - Kutapressin was taken off the market only in 2002, not a long time ago. And by that time, it had already been widely tested on CFS patients. This shows when you look for kutapressin articles. - It is not clear what they give this medicine for: virus reactivations? Other benefits? To conclude this Nexavir topic: maybe I was not clear, and I have been misinterpreted, but I am simply saying that if it helps you, then go on using it, if not, it's not something you should go on for years. As we all know, we have very different effects and reactions to medicines. Simply find the ones you are responding better and that will be ok for everybody. Cheers, Massimo Nexavir? > > > > > > Will you know whether you will progress on Nexavir in the first > use of > > it, or is it something that will take a period time to see how > one > > fares? and is so, for how long? Is it like Transfer Factor in its > > effects? > > > > Thanks... > > Amelia > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 >>>Kutapressin was taken off the market only in 2002, not a long time ago.<<<< oops, sorry about that...I did say my recent check on it was very brief. I partly went on how it had faded from this and other list's discussions. About the recoveries, people have always disagreed adamantly on this. I'd have to know exactly " what " they recovered from. AS in, was it officially diagnosed as in ME defined by Ramsey or top CFS experts or Canadian Case Definition? I do notice that the more watered down/widened the definition has become, the more " cures " seem to be reported. But, also, the disease becomes more complex as time goes on, so severity and time make a big difference. For one who has degenerative damage and age-related issues, soley " cure " becomes less relavant. I'm not saying that only to be negative. {Even tho it P..... me off} But that soley chasing a cure can prohibit some healing opportunities we do know of (and dismiss them for others) and finding a quality and joy of Life *now*. Some of us also believe we have done harm even in our obsessive search, brain strain, and time on the internet (research, advocacy). {Dr. Cheney said that *thinking* may have made me worse} But I'm glad people who can, continue doing it. BTW, I do believe that without advocacy, there will be no cure!! Because, othewise, there will be no research funds and the Psych/CFS/CBT lobby has become a monstor of it's own, officially obscuring and obstructing the rest...hard Science. We all experience the results in most interface with Society and the Medical Profession. Massimo, if you know of such definite cures, I was wondering why you are not just doing what they did? BW, Katrina > > > > > > Dear Amelia, > > > > > > every case of CFS is different from the other even if there are > > patterns that are similar. Some people benefitted a lot from using > > Nexavir (never recovered though), some others like me did not notice > > any change if not a worsening of the symptoms. > > > > > > The first use for me has been a nightmare... lot of anxiety, bad > > sensations... then, lowering the doses, it settled a bit. But after > > three months I discontinued it as I had no improvements whatsoever. > > > > > > Take care. > > > > > > Massimo > > > > > > Nexavir? > > > > > > > > > Will you know whether you will progress on Nexavir in the first > > use of > > > it, or is it something that will take a period time to see how > > one > > > fares? and is so, for how long? Is it like Transfer Factor in its > > > effects? > > > > > > Thanks... > > > Amelia > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Katrina, I don't know of some definite cures in my case because I don't know the problem that made me fall ill at first. Sorrowly, all my tests came out negative, therefore it is far from knowing an exact cure for something that is not exactly known... If for example I knew that my problem was Lyme, or cPn, or Myco, HHV6 or anything else, then I would try that way. But none of them so far came out to be positive. I agree with what Cheney told you though: thinking makes us worse, and at times I really believe I should switch off the CFS channel and try looking some other better ones. Let's see... Thanks for your suggestions. Massimo Nexavir? > > > > > > > > > Will you know whether you will progress on Nexavir in the first > > use of > > > it, or is it something that will take a period time to see how > > one > > > fares? and is so, for how long? Is it like Transfer Factor in its > > > effects? > > > > > > Thanks... > > > Amelia > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 > > Will you know whether you will progress on Nexavir in the first use of > it, or is it something that will take a period time to see how one > fares? and is so, for how long? Is it like Transfer Factor in its > effects? > > Thanks... > Amelia > hi - i've been on nexavir for close to a yr. now. i definitely feel it helps me. i am far from cured, but able to do more overall, although i do require rest periods each day. everyone is different. it seems to keep my flares to a minimum. good luck- anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Hi. I used kutapressin (now Nexavir) about 10 years ago. It took over 6 weeks of about 4 or more cc's a day (had good insurance) before I saw anything. then- boom- reduction in my main symptoms was significant. less fever, fluey feeling, fatigue and achiness. Unfortunately, after I got these intial results, I plateaued. I kept taking the kut. for months and months and no more improvement. However, and maybe I'm the exception, I have kept the improvements that the kut. gave me over more than 10 years now. I have tried it since and nothing, no further improvements. I should mentioned that I show mucho, mucho viral reactivation (in fact, this is what I would say my cfids primarily consists of). So, if you are in the same category as me and have deep pockets or really good insurance (as we all know nexavir is very expensive), I would recommend it. Best to everyone this new year : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Thank you Anne. Could you please tell me what your titres levels for EBV and HHV6 were before starting the Nexavir treatment? I am curious to know if they prescribed it for those titres. Thanks a lot. Massimo Re: Nexavir? > > Will you know whether you will progress on Nexavir in the first use of > it, or is it something that will take a period time to see how one > fares? and is so, for how long? Is it like Transfer Factor in its > effects? > > Thanks... > Amelia > hi - i've been on nexavir for close to a yr. now. i definitely feel it helps me. i am far from cured, but able to do more overall, although i do require rest periods each day. everyone is different. it seems to keep my flares to a minimum. good luck- anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 > > Will you know whether you will progress on Nexavir in the first use of > it, or is it something that will take a period time to see how one > fares? and is so, for how long? Is it like Transfer Factor in its > effects? > > Thanks... > Amelia hi > yes, i had tested positive for both HHV-6 and EBV , not sure of the levels, but that was why i started it. i used to use kutapressin, yrs. ago which definitely helped me, became quite ill again after the birth of my daughter, which totally stressed my body and flared everything big time. at that point kuta was discountinued, and i was very excited to have the chance to be on nexavair, which i do think helps me. i think if i had been able to get kuta or nexavir right away, i would not have gotten so bad. too bad it was not being produced at that time. i also have been on low dose naltrexone for several months, due to very low natural killer cells. just went for blood work the other day, so anxious to see if that has helped. anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 Have returned to this list after a long absence due to relapse. I can attest to the challenges of various treatments and efforts to maintain independence and quality of life. A Cheney patient, until he temporarily closed clinic practice,(@* years) am now relocated and trying to rebuild healthcare providers. Did try Kutapressin many years ago with some improvement.Am curious to the results of product Nexavir, and if it would be available per prescription or which diagnosis code to apply for coverage, other than acne v. With the knowledge available by going to his clinic since dx in 1995, I return to his protocol time after time while integrating other ideas by top researchers. But do agree that Dr. Cheney is the real gem in a world of many rough stones, as it were. Am grateful to rejoin this group. dandylion183@... > > > > > > Dear Amelia, > > > > > > every case of CFS is different from the other even if there are > > patterns that are similar. Some people benefitted a lot from using > > Nexavir (never recovered though), some others like me did not notice > > any change if not a worsening of the symptoms. > > > > > > The first use for me has been a nightmare... lot of anxiety, bad > > sensations... then, lowering the doses, it settled a bit. But after > > three months I discontinued it as I had no improvements whatsoever. > > > > > > Take care. > > > > > > Massimo > > > > > > Nexavir? > > > > > > > > > Will you know whether you will progress on Nexavir in the first > > use of > > > it, or is it something that will take a period time to see how > > one > > > fares? and is so, for how long? Is it like Transfer Factor in its > > > effects? > > > > > > Thanks... > > > Amelia > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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