Hey Jose,

What a joy to see your post! I was instantly flooded with memories of that chat room at BT; feeling like I’m sitting around with friends at the favorite watering hole and Jose comes through the door; people calling out “Hi Jose” and “Jose’s here, we can start the party”. So many conversations about so many things, some serious, some nonsensical. We really had something good happening there.

Auntie Josie, please tell us another Bubba story. Just one more, huh? Huh? I promise we’ll go to bed right after…pleeeaaaasse.

If I had any fears that my words would burn bridges, they’re gone now. Jose’s back. And Liz came out of semiretirement to add her two cents; and Kate’s here too. I never went to high school reunion, but I have to wonder whether that would be any better than seeing so many of my good friends all posting here at the Forum on the same day.

Before I start talking about some of the things you and others have written here, I should tell everyone that I stopped taking Paxil about a week ago. I see smiles and nods of understanding; quitting the happy pills can mean major changes…so why quit?

Those of you who were here when I wrote my first post at NeuroTalk know that I was resigned to the fact that I was gonna die real soon, and that I had already decided that I would choose the time and manner of my death. I was starving myself to death; dropping from 220 pounds to an eventual low of 126 pounds, and stuffing my face wasn’t helping.

If I kept losing weight I would reach the point when I was too weak to live at home and end up in a nursing home. We know that nursing home food is not going to help anyone gain weight. I knew I wasn’t going to starve to death while enduring the indignities that go with living in one of those places, I would wait as long as I could, then I would tuck a .22 pistol under my chin.

Paxil played a significant role in making that scenario not happen, so why would I stop taking it a week ago? Paxil does other things besides help people not pull triggers: It makes the penis useless as a toy, it also makes you not care that its useless. But that was no big deal for me: my back and nerve injuries made “fun” a distant memory and I’m too homely to find anyone who wants to play with me anyway.

But Paxil also puts out the fire in the soul. I wasn’t writing about RSD anymore; I would try, but what I did write sucked. I spent ten years researching and writing about this damn disease and now, when I think I’ve finally found a way to put the words together in a way that won’t make people feel they just took too big a bite of ice cream, I’m asking “Whets the point?”

To me, the choice was between what had been making me miserable and what was making me miserable now. I’ll just have to see what happens next; I know I won’t let myself start looking at my pills and asking “Why not now?” I used to do that a lot; several times a day. I’ve gained weight, so if I see I’m not eating as much I may have to start popping the Paxil again. Maybe I’ll figure out a way to cycle back and forth so I can get something done. Right now, outside of a tendency to feel a bit sorrier for me, I’m doing ok.

I have already finished one article for the website, and I don’t think it’s a coincidence that I suddenly made three posts here after weeks of silence. And the posts on this and other threads, plus the fact that the word cyanosis appears more on page one than in the entire body of literature on written about RSD since 1950, and several “attaboys”, seem to make my decision to quit the right one.

Jose, you’re right about putting everything in one place rather than in replies to others posts. Pat (Artist) said the same thing weeks ago, and that was part of my new plan. But I can be a tad impulsive and those recent posts prove it. I guess stopping Paxil relit all the fires; I know that when I read Dana’s (Bronco’s) post I got really ******. Reading what Frogga said about it being too bad pain doesn’t turn you green was the trigger. It didn’t seem off-topic to me that pain may not turn us green, but cyanosis does turn us some interesting shades of purple. So I said it.

And I said some other things too. I thought I might get people started talking about cyanosis, but for a while it looked like I was wrong. That’s when I wrote the second post. Now people are talking about it, and as you’ve probably already guessed, that makes me feel like my words are finally accomplishing something.

And yeah Jose, I was deliberately calling Mike out. I have faith in Mike; he’s a scrapper and is intensely loyal to doc S. He could still post an interesting reply…or two…or three. So I’m prolly not gonna back away from this in the interest of peace in our time.

And you’re right about the need for long articles. If I’m ever going to convince anyone that there is a way out of this RSD ****, and there is, I’m gonna have to write a lot of words. A whole bunch of words. But this time I’m not going to over-explain until people’s eyes glaze over. I hope it works.

But before I can get anyone interested in ischemia reperfusion injury (IRI), I have to prove that it is simply impossible for any nerve injury, no matter how severe, to mediate the signs and symptoms of RSD. I just finished that article.

That’s just the beginning: ischemia reperfusion injury (IRI) is a very complex process; so complex that doctors didn’t even begin to figure it out until 1963. It begins with the immune system’s response to trauma, and I’m working on that one now. The next one will explain how this immune response goes wrong and turns into IRI.

Oxygen free radicals (OFRs) play a central role in the immune response, and it will take an entire article to explain that. Then I’ll talk about the science supporting my hypothesis that OFRs cause symptom migration and that antioxidants like grape seed extract (GSE) and DMSO can at least delay the onset of this awful complication. It will be the first article on symptom migration that doesn’t rely on things like:

Well, if this happens and then that happens, maybe the other happens, that could explain why symptoms appear in new parts of the body. I’ll write about what scientists know happens, and how putting known facts (not speculation) together really does explain it. For some really dumb speculation about how symptom migration might happen, if God has a sense of humor like Jeffrey Dahmers. email me a request for Maleki’s mostly pointless discussion of the topic. (Just click on my link at the bottom of the page and type “Maleki” in the subject line).

I hope I can fit everything about microvascular systems (MVS’) into one article, because I can’t leave that out. It is a well established fact that IRI plugs MVS, and that leads to cyanosis and tissue hypoxia. And pain and trophic changes and patchy osteoporosis and lower skin temperature.

After I write all that, I have to explain how hyperbaric oxygen (HBO) fixes exactly what IRI breaks, but only if you provide HBO at a much lower level and pressure than the industry does right now. And you can’t rush the job because HBO has to work with the body to replace millions, even billions of plugged MVS. The body can’t do that overnight. Like IRI itself, fixing the damage doesn’t happen overnight.

All of this is going to take a lot of words, and it’s going to take dedication and commitment on the part of those who want to learn. It won’t be an easy task for the reader; it took me four years of intensive study, several hours every day, before I felt I had a really good basic understanding of what is really going on.

This stuff can’t be scattered over dozens of posts, or even dozens of threads; they all fall off page one and eventually fade into oblivion. It will take a dedicated website. Good thing Allen knows how to build them.

Most people will not be willing to take the time and make the effort to learn all of this. I don’t understand why they won’t: This disease is kicking our asses, it is destroying our lives and our families. I would have thought that people would do anything to learn how to stop it, but I haven’t seen much evidence of that so far.

Hell, I’ve been writing about how to delay symptom migration for years. Others have written posts saying they haven’t had any “new” RSD since they started following my advice, and I still cry when I read new posts saying ‘it is happening to me.’ It only costs about $10.00 a month, and I spend more than that on root beer.

I do take comfort in the reasonable belief that the lies about RSD can’t survive much more than another ten years: some physicians are already talking about the possibility that RSD is IRI, and their number can only grow. Those who are still alive in 10-15 years will finally be able to get the treatment they should have begun getting tomorrow; it’s a damn shame that they will choose to suffer all that time.

Oh, and I should have dropped that part about burning bridges: If you had read the first couple of drafts, you’d have probably agreed that someone needed to take my matches away from me; but I eventually calmed down and wrote the posts all of you read. ATTABOY VIC!!! I told you you didn’t have to waste all that money on those stupid anger management classes.

Anyway, I felt kinda shot down when people didn’t respond to my words the way I hoped they would, but I got over it. Getting a bunch of attaboys from people I have loved for so many years helped a lot. And I’m a lot like a terrier: you can beat the crap out of me, but as soon as I start feeling better I’ll be right back in there, biting the Hell out of your toes.

Don’t ever feel bad about your long posts. If someone pressed me hard enough, I might be able to come up with one of your posts that could possibly not have been worth the time it took to read it. Perhaps. Most of em help more people than the one you’re talking to.

(I still remember a post from someone who loves me, a true friend. And friends aren’t people who accept you for who you are all the time; real friends tell you when they think you’re screwing up.

(Do you remember what you said when I wrote about going back to Chiapas? I do. You pretty much demanded to know what was going on in my pointy little head. You said I must be crazy to think about driving 1900 miles when I collapse in pain after just 200. You asked what I would do once I got there – if I got there. How would I find a place to live? How would I shop? Stuff like that.

(I didn’t think about that stuff. I felt so totally emasculated that all I wanted to do was go back to the place where I had proved to myself that I was a man. To the moment that I knew I was willing to die to protect my friends).

Well, old pal, I’m still here, still alive and still writing. I like to think I probably would have recovered my sanity before I drove past the point of no return, but…

Anyway, thank you for that. Thank you for the Bubba stories, thank you for this wonderful attaboy and thank you for being you…Vic

Oh, by the way, my plan to edit the Hell out of my articles is off to a roaring start. Before editing, this was about 1900 words: Now it’s 2200.

I still have things to say to my other dear friends who rushed to support me. I’m just kinda tired right now. Jeez, 1900, erm 2200 words. No wonder I’m tired. Meanwhile, I just found a toy I haven’t played with in years…