I wouldn't describe our camping trips as stressful and energetic. ...Hell, I exerted less energy in a long weekend of camping than I do in one day at work.
OK. Sounds like work to me, but I will take your word for it. Was it hot out there? I'm not sure where you live, but being out in the heat as opposed to inside in the AC could obviously not help things.
Please understand me, I'm NOT
trying to say that you don't feel like absolute crap—before, during or after camping, was just questioning whether camping should be the final, potentially life-altering barometer of unawesomeness, that's all. Obviously for you, the answer is yes.
I'm not a camper so it seems really hard to me and being out in the heat would definitely NOT help me unless there was cold water to soak in nearby. On the other hand, maybe you were camping up in the cool, cool mountain air and your only issues was skeeters.
Loobie wrote:Also, placebo effect or not, what happened happened; i.e., it was real to me.
Seeing how this is the internet and I know none of you personally, what good would it do for me to make that shit up? I was walking with pain free and energetic legs for a good bit there. I can't explain it, but it's not that way now and that is what it is. Psychosomatic? Maybe. Real? Maybe. Who knows for sure. I just know I hadn't felt that good in a really long time and it was for more than four days and I got excited and posted about it. That pretty much sums up what's happened. As of now, that period where I got a little better may as well have never happened for all the good it's doing me now. That's one of the things that really sucks about this whole process. You are basically 'waiting by the phone' for something to change. When it does, and it's in a positive direction for days, I am going to get really excited. Maybe I should have waited longer to post at all, but I was chomping at the bit for something positive that lasted longer than four days, so there we are.
Loobie, I think you're misunderstanding me and possibly the concept of placebo effect.
First, I was NOT questioning how you felt. You felt how you felt and you feel how you feel. I certainly was not and am not suggesting that you didn't. How you felt was real, and we were all really psyched for you. I think we all have enough going on that we certainly don't need to make shit up good or bad to tell a story. Definitely NOT what I was trying
to say at all.
Second, placebo effect is real. The person who feels how they feel really feels how they feel—mind over matter based upon a perceived outside positive stimulus. My neuro gleefully details how good of a placebo responder she is. Under placebo effect, you not only perceive that you are getting better. You DO get better by the same concrete physical testing that we all go through. You have just THOUGHT YOURSELF BETTER. But you are better
. It's not made up.
Now that I've got that out of the way, I'm also NOT saying that what you experienced was placebo effect. I don't know you at all and I have no clue. I was just thinking out loud. It's what I do and I apologize for it.
I'm also not sure how you would have placebo effect when you're on the real drug. I guess if it really didn't work for you, but your body convinced you that it did for a very short time, that would be possible, even while the drug wasn't really doing what it was supposed to.
My question was simply how you could have had such a huge bump up and then a huge swing down. I'm very curious if this has happened to others in the study. Maybe this isn't abnormal at all and your body is still working on stuff you just can't see/notice? I have NO idea, but as you said, your improvement was no illusion, just as your dip has been no illusion.
I am also curious what the expectations from Opexa are on rebounds. We have heard Tim's informed opinion and personal experience on the vaccine that he has had, but we have also heard that what Tim has had, at least up until this point, is probably different than what we've all had under OLTERMS. For all I know, a 6-9 month rebound might be normal in the more severe cases. <shrug> That doesn't mean that you sit there and take it. Maybe you can't. Again, everybody's gotta do what's best for them. I assume that's why we all got into the trial in the first place.
Please accept my apologies for making you stressed out. I should have been much more clear in what I said, or perhaps just kept my mouth shut entirely, though that is not my forte. I do NOT think that you should have kept yours shut. You have been very animated, but also very careful and clear about what you are experiencing and that, I feel, is what this board is for: sharing both the emotional expression and personal experience that goes with MS and TERMS.
Most humble apologies, sir.
Hang in there.