Saturday, October 15, 2011

Testing 1, 2, 3...

The nitty gritty for those that have been asking:

On September 30th I started a six month clinical trial. It will go until March 16th, just a few days before my birthday (Happy Birthday to ME!). The trial will see me up until the 2nd anniversary of having Aspergillosis.

The trial is affiliated with The Center for Infectious Disease and Centers for Disease Control and Prevention, and is being conducted by doctors from Stanford and UCLA.

To answer some questions I've gotten, there is no control or placebo group in this trial. This new drug and treatment is being measured against the results of other current drugs and treatment methods (a lot of my old results come into play). With this disease, a placebo is not an option, as no treatment equals death. Yup

In that same regard, there was a preliminary group of healthy test subjects, to make sure nothing catastrophic happened, but healthy patients can't really test the drug because it only targets Aspergellius, specifically. I also haven't been told what, if any, side effects there had, as they don't want to imprint anything in my mind.

I'm 16 days into the clinical trial and here's how things are going...

-I've been falling asleep easily at night, which wasn't the case when I was on the steroids.
-I stay asleep all night and wake feeling refreshed!
-My kidneys are holding their own. (Struggling, but hanging in, nonetheless)
-I haven't had to have my blood filtered in a month
-I haven't had any horrific side effects (compared to the things I went through starting all my other drugs, this is HUGE)

-The skin in all my bends, folds and orifices itches like nothing I have ever experienced before (and I have eczema and have battled poison oak, so I know itchy). I've been told it's likely a Herxheimer Response which is actually a really good thing.
-I want to fall asleep at approximately 7pm now.
-I'm losing weight, again. Pretty much all the weight I put on with the steroids is falling right back off.
-I feel wonky every few days. I don't even know what that means, or how to explain, just something feels off. It's not good, or bad, just odd...

If I didn't answer something you'd like to know, feel free to ask.

I'm actually starting to feel a tinge of hope that this thing might work :)

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