Ok -As I said I would, I tried this therapy. I'm not sure what to say yet other than to be honest I feel this is so far the best treatment I've tried to date. Seriously.
The question that remains is it the Amino Acid therapy or the Immuran/Pred having the effect. Or all three.. Haha, good lord why does this disease always have to be so complicated. I'll get back to thoughts on this, but first here's a summary of what's happened over the last 14 days.
On the week starting the treatment I was on 20/mg daily pred and 150/mg daily Immuran.
Day 1 - Was brutal:
I thought I was going to die... I can only now describe it as an anxiety type feeling. I experienced something similar while on Remicade and Methotrexate. Anyway, it felt like my hear was racing, face was flush and so on. I was literally afraid to go to sleep - which happened on the rem/meth combo. Eventually I crashed hard after doing some relaxation and breathing stuff. I said to myself no way... I'm done with this treatment, thinking it must be a reaction between the Pred and this treatment. Akin to seratonin toxicity.
Day 2: - Was not so bad but not so good
I awoke the next morning and felt pretty good. Tired, but good. Didn't have a real urgency to go to the bathroom right away and when I did, sure as s&^t it was pretty solid'ish. So I made a coffee and said ok, I'll try it again this morning and if it gets worse or is the same as yesterday I'll stop. By noon the anxiety type thing returned. Came home from work, lay down and rested for a bit and it went away - or decreased substantially. So I continued taking the treatment. Same problem at night but the relaxation stuff did the trick again.
Day 3: - Pretty good
So here's when the big change occurred... When I woke i hit the bathroom as per earlier. Solid stool. Now I've had solid stool from time to time - but not like this. This was normal poop for lack of a better term. What was different was the color and odor... was well, like normal poop. Not stinky or burnt smelling or "not-right" like I have always had since the onset of this disease. Also on day three the intensity of the anxiety symptoms lessened substantially.
Less morning urgency. Les anxiety. Feeling pretty good etc.
Day 5: Spoke with Dr. Stein. I explained to him the anxiety thing... he stopped me part way through and said it has nothing whatsoever to do with a reaction between Prednisone or Immuran and then explained it like this: He said think of your body as a house - with electrical wires running to each room (or organ). Seratonin being the black wire and Dopamine being the white wire. They are the main power carriers. He said that for me, the wires have been off, or not functioning properly for many years now. Then he said what we have just done over the past few days is simply flicked on a few light switches... The reaction your feeling is just this... your body trying to figure out what to do now that the lights are turning on again. We discussed how to take and send the urine sample to the lab and discussed the next dosage change that was coming up on day 7 - this is where I add L-dopa.
More normal poop - Like the kind I used to have back before I was sick. A waaaaaay back in high school. Not foul smelling, one wipe kinda thing. I was pretty amazed.
At this point I sort of stopped keeping track of things on a daily basis.
But all in all it was a positive 7 days. The most noticeable change was the reduction in urgency in the mornings along with the stool color/odor change. I should also mention that I kept away from any probiotics whatsoever beginning a week or so prior to the trial. Even with high dose probiotics I never had a reduction or change in stool like this.
At some point - I think around day 5, I tried adding a piece of Multigrain bread that I always have a brutal reaction to... The Starbucks bread that comes in their Protein Bistro Box.. normally this kills me as I end up with what I call "putrid poop". Foul smelling, loose D type stool - awful stuff. Of course this time around while on the Amino Acid treatment the same thing occurred - but the difference was, well, it didn't smell all putrid and such... And once it was out of my system things went back to the way they were before.
What was very clear during this first week was no mucus. Or very minimal. This was interesting.
Day 8: I made the dosage change required by the treatment and added the L-Dopa. At the same time was a drop in the Prednisone down to 15/mg daily and 150/mg Immuran.
There has been for sure an increase in mucus since this change of adding L-dopa but it's not all the time - more so every now and then and seems to correlate more to diet than to the meds/amino acid treatment.
I've been messing around with diet for the last few days just experimenting. One thing is clear now, my ability to "tolerate" complex carbs has increased substantially. Although it still results in mucus, the stool is pretty normal and not foul smelling etc. And for the first time in a VERY long time I am able to "hold-it" in the morning. I did this for two full hours the other day just out of curiosity... So this is very interesting.
All in all I have a comments at the point (Day 14):
1) There has been a complete and dramatic change in my stool and "smell" for the positive.
2) There has been a reduction in urgency to the point of zero urgency at times and the ability to hold it.
3) There is a general feeling of ummmm... less pressure in my abdominal area. Far less discomfort I guess. Very dramatic change actually. From time to time there is a little pressure - but again seems more diet related.
4) I feel ummm, mentally very clear again. Happy I guess - not sure how to describe this one. But very noticeable.
No negative things whatsoever to say at the moment.
Far from perfect, but I'm going to say it's by far the best treatment I've tried so far. Which is odd because that's what they said the guy in the case study said upon his second week....
I'm starting think there might be something to this.
Far from better - but far from worse.... It's enough of a difference for me to say that if this is the best it get's I'd stay on this treatment anyway.
I'm dropping today to 10/mg of pred daily for the week. So we'll see what happens.
Normally, when I drop to 20/mg I get a flare up even with methotrexate which is the alternative to immuran . This time, with the addition of this treatment - no flare.
So I guess I'll sit here with my fingers crossed and see what happens.
Yeesh... that was a lot of typing...
Post Edited (Canada Mark) : 3/17/2013 2:29:37 PM (GMT-6)