As of June 24th there's been virtually no drop in my Nagalase: it went from 2.2 to 2.0. I haven't had another test since. Maybe I should ask for one.
I started MTF last week. Some other patients reported feeling immediate changes when they put it on, (it's like a cream you rub into your arm) either jitteriness or more energy, but I don't feel anything.
It seems like this summer is progressing and my health is declining at the same rate as it would if I'd never started GcMAF or MTF.
My VDR phenotype results which are supposed to predict GcMAF response were finally sent to the lab, but it will be another month before I find out what they are. At this point I don't really care.
BGLI, my GcMAF source, has, for the time being, stopped shipping to the US and Canada. Even though I haven't felt any changes yet, and it's not too early, it's also not too late, and I didn't want to stop my treatment halfway. So as I write this my parents are in Amsterdam, a trip they took with the specific purpose of bringing back a three months supply of GcMAF for me from BGLI. I'm determined to do the whole six months.
Then there's the other GcMAF, the bovine kind made with yogurt. It's supposed to be helpful for digestion, which God knows I need help with. 20 or so Cheney patients are starting a trial of it sometime in the next two weeks. One of them read this blog and contacted me, so I'll be able to find out how he's doing. And supposedly after the trial this will be available for all patients to buy, I think.
It's not easy, but I am still determined to believe that any treatment could be the one that makes a difference.
Meanwhile I have not done much this summer. It would have been awesome if I could have gone with my parents to Amsterdam myself, but even though technically I'm sure I could survive the flight, the stress would do a big number on me, on my body, and it would just be a miserable experience. Anyway, I've already been to Amsterdam. It was kind of a side trip when my friend and I were traveling around Germany. I think it was supposed to be just two days, but we decided to stay another because I spent the entire second day asleep. It was the second time on a vacation where a friend, who normally was tolerant of my long sleeps, suddenly got angry at me for it. Because now we're in Amsterdam. "I understand if you want to sleep all day in Ohio, or sleep through college, but not when there's fun stuff to do." Both times it was a disturbing surprise to find out these friends thought I slept all the time because I had nothing better to do. Like I was making some kind of statement. Hadn't I made it clear this sleep thing was beyond my power and my understanding? Apparently not. Probably my pride got in the way.
Been watching a lot of movies. Almost seen all the AFI 100. Latch-hooked my way more than halfway through a welcome mat. Been making Spotify playlists. Most days now I am not able to read. So, I'll be keeping up my Audible and Netflix accounts. Wish I could do something more.
