More anecdotes. Transfusions five and six are in the books and I'm at the airport in Portland instead of in Seattle back in my own bed. Last night we flew from Reno to supposedly Seattle but we lost an engine and JH landed in Portland. The notable thing related to the study is that I felt no anxiety when normally I would be going through the ceiling under those circumstances. Other than getting no sleep last night, I'm feeling really pretty good. My muscles are loose, my neck is fully rotational, not cracking and I generally feel I'm just pretty healthy. Time to board the plane.

I'm at Stanford having my 7th infusion as I type. After two days of transfusions the rubber will meet the road as I go through the on and off tests Wed and Thurs like I did at the beginning of the study. Then, another month to wait for the last go round of tests. Other than still being very weary from spending a night in the airport last week, I feel amazingly fine.

I'm finished with my infusions at Stanford and have taken the first two batteries of tests that signal the end of the study for me. I take the last tests in mid-March and then wait for possibly two yeas to hear the results. As this is a Phase 1 study, there is a LOOOONG way to go. To facilitate communicating with many people, I wrote essays on my experiences, before and after the infusions, and posted them on my website: nanlittle.com. Please feel free to ask questions.

The last infusion was on Valentine's Day, how appropriate, and the interim report is that I continue to feel well, with very few of my PD symptoms in evidence. It's not that they are completely gone, just much reduced. How much of this is the placebo effect remains to be seen. Whatever it is, I'll take it.

I continue to feel really well now, almost three weeks after the last infusion. Oddly enough, II have developed some dyskinesia, which I didn't have before and my tremor has reappeared to some extent. I'm wondering if it's possible that I now have too much levadopa in my system, i.e., perhaps the infusions are changing my blood chemistry so that I am producing more levodopa on my own. I cut back one half of one 25/100 tablet and the dyskinesia eased up. Just a thought.

Nan,

I think you left out one (possibly important) piece of information. What happened with the tremor when you cut back the Sinemet?

Also, what exactly do you mean by "eased up"? Do you still have some dyskinesia?

If it was me, and I still had some dyskinesia, and the tremor hadn't gotten any worse, I would probably cut back a bit more.

Given your unique situation, we can expect that things will change again in the coming days and weeks, so you'll need to remain alert.

Jeff

Jeff, Your points are well taken. However, in order for the researchers to distill valid data, as many parameters as possible need to remain constant. For two days I experimented with the dosage and then decided my discomfort was less important than valid data so I went back to the Sinemet doses of 1 at 7, 10, 1 and 1/2 at 4 and 7.

The tremor only happens in a 10-15 minute time frame around pills at 4 and 7 p.m., and that's not always. That's generally true for the dyskinesia as well. When I was taking the full pill at 4 pm. the dyskinesia was very much in evidence. Now it is still there, but not nearly as noticeable.