Frank, First, if the trial you're considering won't even be available for another year, you have no rush to decide. April isn't a guillotine, it was just a ballpark date, chosen arbitrarily to mark time. You're not stuck with it.
I, too, originally said 'one year'. At one year, I realized my ''improvements weren't huge, but my bizarre, cascading progression had stopped and all the symptoms I experienced upon diagnosis were gone. That WAS my improvement. I didn't have big, long-term deficits to deal with, so I didn't have big, long-term stuff to recover. What I did have was: no more severe sinus and lung infections, better recall and ability to draw on my vocabulary, slightly improved vision, no more feeling of uncertainty when holding a glass in my left hand. Small things. Things easily dismissed and forgotten, in time, as never having been an issue.
Around two years into the protocol, I noticed something. In my life, it's a big thing only because it's been a fixture in my life for at least fifteen years, with no explanation. Again, it wouldn't register as a big deal to anyone else. I've had a lump on the outside of my left upper thigh for a long time. It started out as an angry, itching red thing (thought it was a really bad mosquito bite). When it didn't disappear as weeks and months went on, though the itchy bit passed, I was annoyed. It looked like an infected blister. When it turned harder and red-purple, it was pronounced an 'age-spot', just one of those things that happen as you get older and nothing to be done about it. A cosmetic surgeon offered to remove it, but said it was risky, due to blood vessels being so close or some such. Over time, the skin stretched over it looked scarred and thick. It settled in as the size of a pea. A large pea.
Last June (20 months on abx), I noticed the size had gone down. By autumn, it was down so noticeably, I posted about it elsewhere. Today, it's down to the size of a tiny seed and I can still feel something 'working' in there and I know it's going away. Again, without explanation, except I kept on taking my abx, even when logic said I could have quit and gone on intermittent therapy by now. If abx is still working on me past the two year point, what good things is it doing INSIDE me, that I'm not as aware of as the big, red marble on my thigh? Probably a lot. If there's cpn in my bone marrow, I want it dead. If there's cpn in my spine, I want it eradicated. If there's cpn anywhere at all in me, this is my chance to destroy it. It doesn't cost a fortune. I'm used to the regimen and it's barely inconvenient in my life. Why not do a little too much, rather than too little and again have to deal with this horrible disease later in my lifetime? I threw my arbitrary 'one year' dicate out the window on blind faith and I'm glad I did. If it took me a lifetime to grow this disease in me, I'm willing to spend two or three years to make sure I purge it once and for all time. There's no harm and every possibility for a good outcome, so I'm staying with it.
One last thing. Rica got steadily worse for eight or nine months, until her disease growth was halted and then reversed. She's not the only one. Ella stills remarks she sees little improvement or complains of a deficit rearing its ugly head periodically. (Her mom, of course, sees and reports the improvements Ella doesn't register. We're not always good at self-assessment.)
A lot of people, including me, see a subtle turning point around the eight or nine pulse point, but only in restrospect. Dr. Stratton is now speaking more in terms of yearS of treatment, not year, which I think is so much more realistic. I really hope you'll recconsider. I just don't think a year is enough time to realize full recovery or to assess improvements. Hindsight being 20/20, and all that.
Last edited by MacKintosh
on Tue Feb 05, 2008 10:06 am, edited 1 time in total.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi