Riley
Senior Member
- Messages
- 178
Hello everyone. Ive been lurking on this board for a really long time, but now my situation has become desperate, and Im hoping to get some advice. Im a 25 year old male with CFS for four years. For the first two years, it really seemed more like fibro with extreme muscle pain and tightness as well as mild anxiety and a wired/ADD feeling. Then I began getting really sick over and over again, and each time I recovered, I was significantly less functional. For the past year, things have gone really downhill, and I now have severe CFS. I have been 90 percent housebound for the past year, but I have been able to generally get around the house OK and surf the internet or watch TV for most of the day without too much trouble.
However, in the past few weeks, things have gotten much, much worse. My formerly mild POTS has become so severe that I find it hard to move, and I a constantly feel like Im suffocating. Furthermore, Im having extreme anxiety and cognitive impairment. I dont really know how to explain it, but I feel very out of it and almost disconnected from reality. The constant sore throat that was previously just a nuisance is now incredibly painful. Im most alarmed because up until very recently, I have felt like myself and mentally solid, but now that seems to be slipping away.
I didnt want to take up too much space detailing my history, but hopefully this gives you some idea of where Im coming from.
Im looking for advice on what treatment to pursue. Financially I think I could swing just about anything that is available at this point. It seems to me that my choices are either valcyte plus possibly nexavir and/or GcMAF or moving to North Carolina and enrolling in the Ampligen 511 program with Dr. Lapp.
My concern with antivirals is that I could get a lot worse on them and in the end not experience any improvement. Frankly, I cannot bear the idea of getting any worse than I have been the past few weeks.
My concern with the Ampligen trial is having to move across the country and live on my own in virtual isolation while getting the treatment. Especially given the recent level of physical and mental disability I have experienced. However this option does seem to offer me the best chance at the most recovery, and I feel that I could bear any hardship if I improved in the end.
How would you approach my situation? Do you think its worth it to try the antivirals for a year or should I just cut to the chase, suck it up and move to Charlotte? At this point, I feel like my life is on the line.
However, in the past few weeks, things have gotten much, much worse. My formerly mild POTS has become so severe that I find it hard to move, and I a constantly feel like Im suffocating. Furthermore, Im having extreme anxiety and cognitive impairment. I dont really know how to explain it, but I feel very out of it and almost disconnected from reality. The constant sore throat that was previously just a nuisance is now incredibly painful. Im most alarmed because up until very recently, I have felt like myself and mentally solid, but now that seems to be slipping away.
I didnt want to take up too much space detailing my history, but hopefully this gives you some idea of where Im coming from.
Im looking for advice on what treatment to pursue. Financially I think I could swing just about anything that is available at this point. It seems to me that my choices are either valcyte plus possibly nexavir and/or GcMAF or moving to North Carolina and enrolling in the Ampligen 511 program with Dr. Lapp.
My concern with antivirals is that I could get a lot worse on them and in the end not experience any improvement. Frankly, I cannot bear the idea of getting any worse than I have been the past few weeks.
My concern with the Ampligen trial is having to move across the country and live on my own in virtual isolation while getting the treatment. Especially given the recent level of physical and mental disability I have experienced. However this option does seem to offer me the best chance at the most recovery, and I feel that I could bear any hardship if I improved in the end.
How would you approach my situation? Do you think its worth it to try the antivirals for a year or should I just cut to the chase, suck it up and move to Charlotte? At this point, I feel like my life is on the line.