Chronicles of a Rifampinaut vol. 4: post pulse 21 and still going...
It's been a long time since I've been around on the site but decided today to write something, so that I could record where things are and have it to refer to in the future. I'm sad to say that I'm no better off now then I was 4 months ago, at least as far as I can tell. There are brief periods where I feel really good but that's nothing new, I've had that since before starting the CAPi almost 2 years ago.
However, I do have to recognize that I'm still relatively early in the use of Rifampin, having started it in late August. I'm on the end o my 7th month of using it. Well, maybe early isn't the right term but I don't have a darth of experience with it although that's in process.
I do still have reactions to things, particularly today. I just started taking, today, Annato based tocotrienols. I took 100mg of it with my morning drugs. Definitely has had a noticable reaction, I feel worse than I usual feel after lunch, which is bad enough; however, today I feel especially bad. How do I mean bad? Basically my balance and walking are seriously impacted, both are difficult enough but on days like today, it can be particularly grueling to walk and maintain balance for any distance. I've taken to maintaining contact with the wall as I walk, as a point of reference and way to steady myself.
I know something to be true every time I really think about things. When I first found out about the CAP, I did an empirical trial with NACi and was basically incapicitated for about four days. I just couldn't go to work and slept a lot the first two of those days. I had even worse problems walking and being balanced then, then I do today, much worse. So when I asking myself is this working, and that's something I ask myself a lot, I always remember that week. NAC doesn't even phase me today in 2400mg quantities each day. But then I ask myself again...is this worth the effort when I've next to no discernable benefit from it so far and it has been almost two years??? I have to tell myself to keep going, don't worry about it, don't give up, there's no better option. So I go on.
I do want to mention, before I forget, that I did try NT Factor for two months, 3 times a day. I noticed nothing from taking it, so on the third month I didn't decide to continue with it, given the very high cost involved. I instead decided to try other things, which I'm doing now. What things? Glad you asked...
As mentioned, I just started on Annato tocotrienols today. I also started on D-Ribose earlier in the week, and 120mg of CoQ10 at the same time. I think the D-Ribose has helped a bit, although it's not consistent, it just depends on when I take it. It's really too soon to decide anything conclusively about either of these things. I do know the Annato tocotrienols have made a difference today and I'll know more tomorrow after taking my next dose and whether it's definitely evoking the worsening of symptoms. Worsening is a good thing in this situation, albeit not pleasant in the least bit.
In any case, I just wanted to check in. I'm still around, still trying, still keeping on. I've been considering whether to start on INHi as it's been sufficiently long enough on Rifampin that adding INH would be distinguishable from the Rifampin. However, since I just started the tocotrienols, I think I'll smack myself down with adding one thing at a time and give it time before adding another.
all my best