dipic,
so good to hear from you!! so glad you are home and recovering and, hopefully, all those good stem cells are busy acclamating (sp?) to yr body, giving it new life, literally.
would your father be willing to talk to one of us (i'm happy to volunteer) and give his assessment about the experience in panama, and how he sees you doing at this time? then that info can be relayed to this thread.
warmly,
rrrr
Hey Rrrr, I asked my Dad what he thought and while he has no problem with it, I personally fear (and he agrees) that, among other things, his perception of how I'm doing, especially at this time, would probably not be of much use. As far as our experience in Panama, that is a possibility.
Regarding the illness, and with all due respect to the man who raised and continues to care for me in my poor health, even he will tell you that he is not the most scholarly person. After 30 years of working as an inner-city policeman, and pushing now pushing 60 years of age, I'm not sure he would be the best candidate to describe these things.
Furthermore, while he understands what I go through better than anyone else in my family (which isn't saying a whole heck of a lot), when it comes to the details of this illness, he is quite ignorant to it in most regards. The majority of it just goes right over his head. Again, I mean no disrespect to the man; if you asked him, I know he wouldn't tell you any differently.
We have come to an agreement that, I do the research (which "is all Greek" to him) and he will take care of the financial logistics. (unfortunately it's hard to do any research these days, so I make do the best I can)
That being said, and with that in mind, if you would still like to speak to him, like I said, he would be completely open to it. Just shoot me a PM with info, or info that you'd want (email, or cell # if you'd prefer to speak to him directly) and we can easily work something out.
I don't see any reason you can't recover, Ben. You don't have irreversible organ damage. The stem cells might work over the next 3 months, anti retrovirals or antivirals might work, other approaches might work. It's a matter of isolating the source of the problem--inborn genetic errors, which pathogens, which environmental issues (or all of those).
Hi Jen, I mean no offense by this... but how would you know that? This is actually a fear of mine. Actually, a bigger fear is that my body has adapted itself to the condition it is in order to function. This vaguely (and not so vaguely) coincides with some of Cheney's theories (as well as broader theories and concepts of pathophysiology.) I have experienced several of what I refer to as "paradigm shifts" in my body and overall condition, even after I fell into what I call my "perpetual and self perpetuating crash." In fact, I consider the first one to be the one that occurred/resulted from when I entered this state.
Moving on but not away from that thought, it is also my fear that XMRV is not "the one". My personal feelings, going purely off my admittedly limited knowledge, own experiences, and intuition is that XMRV is not the only factor in causing what we call "ME/CFS". I feel there are more factors involved, such are some sort of predisposition.
Now, that said - if, for example, I took some magic pill or some divine entity suddenly purged all the XMRV from my body, what condition would I now be in? That day, a week, a month, a year from then?
I would imagine, and of course this is purely conjecture, that I would still be awfully unwell.
Mike, forgive me as I have not followed the story of your recovery since very early on, but did you not say that you still experience some cognitive dysfunction (and maybe some other lingering symptoms)? There is not a single person I know of who has made a
functional recovery from this illness that is completely free of all their symptoms, no matter how mild.
Now lets take all the speculation and conjecture on my part out of the picture for moment; Jen, you said it's a matter of "isolating the source of the problem" as if that in itself were simple or that that's all there is to it to make one completely or even significantly well again. :worried:
Again, do I believe a full recovery is impossible? No. But in the immortal (in my mind) words of my primary doc, "well, it's possible... just not probable."
Anything is possible. I'm sure one day we'll have a cure for most diseases (given our race survives that long)... but how long will that take? How many lives have already been literally and figuratively lost to this illness while government agencies and scientists who are supposed to be solving our illness, have either been sitting around jerking off (pardon the crude fos) or worse yet, maligning and abusing us.
How many months has it been since the Science paper came out again? And how much progress have we made with that so far?
I don't mean to sound so bitter or angry but I guess I'm just trying to explain where my pessimism comes from... I think. I don't even know at this point, I'm tired and completely rambling. LOL, I really do need a blog.
edit: Just saw your post, Mike. Okay, I guess I remembered/thought correctly then. I always say that if I can recover to %50 to what I once was, I could live out a life like that. Naturally, I have had to lower my expectations (like most people this sick?) I would be lying, however, if I didn't say that the worst part of this illness by far for my is the cognitive dysfunction and that I would never feel fully satisfied with my health if I never regained that part of me back. I would rather have a frail, shriveled and utterly useless body as long as I could used my brain to it's full extent. And that's the thing that depresses me the most as it's also the thing that is the least likely to ever come back.
