Monday, July 12, 2010

Gamma Globulin Injections & Reverse T3

I've been doing self-administered (well, more like mom-administered) gamma globulin injections since December/January or so. I actually suggested it to my CFS doc and he agreed it could be helpful. He said it'll work in place of my immune system and thus give it a chance to rest, rebuild, and get stronger. I started with once every 2-3 weeks, which I ramped up to once a week for 2 months in April/May, and then decreased it back to once every 2 weeks (though I kind of feel like I'm addicted to the idea of it right now because I'm just itching to do them more often!). I legitimately feel like they help me. It was really hard to tell at first, but in the last 3 months I've decided the benefit is really there. I felt incrementally better when I was doing it every week, and when I switched to every 2 weeks, I feel better the week that I do it.  I do feel like my baseline fractionally increases a few days after the injection. So much so that I kind of get frantic and panicky whenever there's a chance I might have to skip a week's for whatever reason! Just did one yesterday and waiting for the positive effects today!

Also, I've been doing hormone replacement therapy since about November as well. My reverse T3 thyroid levels were sky high (550, where the upper bound of normal is 310), which Doc explained it as my body chronically suppressing itself (reverse T3 increases with normal illness to keep you from over-exerting yourself by making you feel tired etc....we just seem to ignore that sign!). So he started me on T3 (3mg and just now increased to 15 mg because of my cardiac issues). It's supposed to keep the T3 levels slightly elevated so that the body reabsorbs the reverse T3. And so far it's been working! My reverse T3 is now dropped to 310 (upper bound, within range!) but he wants it even lower at 200; my TSH level has also increased which means it's being incorporated into the body more efficiently. Hurrah for some kind of progress with biological markers at least.

Just thinking on progress in the last 7-8 months I guess and what's causing what. Doing so many things all at once makes it so hard to tell how effective each is individually, but maybe that's also the point. It's not just one problem, and needs to be tackled from more than a single direction. All of these systems in our body have crashed and need to be restarted.

On a happy side-note, I got permission from my boss to take a week off in September. Which would be exciting on it's own (a week of resting without work...ahhhhh) but is doubly amazing because my boyfriend and I have been talking about taking a 7-day cruise down to Mexico. Which is so exciting because a month ago I couldn't even think about doing something like this, but now it seems a bit more reasonable. I mean, if I can push myself through working 20 hours a week, a cruise should be a piece of cake right? Yes there will be lots of walking around, but there'll also be quite a bit of lounging around in the sun and fresh ocean air doing nothing. I'm a bit excited about that part! :) It still is probably not exactly the best thing for me, but I so want to do something, go somewhere (be someone?) again. Anyway, I would have never considered a cruise in my better days; too slow and inactive for me! But now, perfection. I'm pretty sure the bf will go a little bonkers from 7 days of nothing (especially since I can't get off the boat to do excursions and he won't go without me), but my own boredom threshold has gone way down in recent years. So it'll be interesting to see what happens. Either way, we're buying tickets tonight. Yay!


Dawn said...

I am so happy that you are finding something to help you. I don't know much about the Tcells (but have read quite a bit - I need to become more educated - LOL), but am thrilled that the injections and treatments are helping you so much.

I'm excited for you to go on the cruise. I went on one (pre-illness of any kind), and it was WONDERFUL. I personally think it's a good way for you to venture back into a vacation because you can rest as much as you like, and you will have wonderful meals prepared for you and have to do very little for yourself.


Jo said...

All sounds very positive! Yay for holidays!

I found keeping a daily record of energy and mood levels quite handy for looking back and seeing if medication makes a difference. If you do it in Excel, giving a numerical value as well as keeping notes, you can actually graph your progress. If you are not an Excel geek I've got one I can send you if you are interested.

Have a great time looking forward to the cruise! And feel my envy :-)