Friday, May 16, 2008

Treatment Update

I spoke with my doctor today about starting Valcyte. He said it is fine to crush it. We have instructions so thank goodness no worries about that. He also said people tend to feel worse for 2-3 months but that means it's working. The symptoms that get worse are the same ones that I'm experiencing now.

I mentioned how I noticed that when I'm not feeling well my anxiety increases and then it becomes a vicious cycle in my head. The doctor explained this happens because my brain is inflamed and can't process things normally right now. I can't remember how he put it but it was very helpful. The brain inflammation also affects mood, cognition, and other things. Thank goodness I've gotten used to the freaky idea that my brain is inflamed. Right now my anxiety is focused on the heart stuff.

But the real news is that treatment will take be taking a completely different course for the next 6 weeks. Because of where I did my post-doc, the timing of my symptoms, and a strange bite I had I have been concerned about lyme disease. I'm pretty sure that my illness is viral but in many, many cfs people there exists viral as well as lyme, and other co-infections. Our immune systems are a mess.

I'll be taking some herbs to treat babesia and then in 2 weeks start on a 4-6 week course of antibiotics. If lyme and babesia are the pathogens then I'll know in 6 weeks because I'll start to feel a lot better. If I don't feel better than I'll start Valcyte. I expressed wish to be as aggressive as possible with treatment and he said that with this illness one needs to be patient. I thought that was very timely and wise.

I haven't noticed too much of a difference with the mitochondria treatment and b12 injections. It has probably helped about 5%-not much but I'll take it. I'm going to try undenatured whey protein.

I feel good about the way my doctor is approaching treatment. Valcyte is a big commitment. Deep down I know I'm not ready to begin that journey. Maybe I won't need to.

I woke up this morning feeling like shit-absolutely awful. When I feel this way it scares me. My immediate thought was I can't start Valcyte today because I'm too sick. I've been feeling weak, lightheaded, anxious, no appetite, and a wired fatigue. Yesterday it was really hot. Today too. I think the heat and not sleeping well has contributed to how bad I feel.

I'll also be starting liquid doxepin tonight to help with sleep. It also might help with anxiety. I also have the okay to triple my klonopin if need be. I don't want to increase the klonopin because of the addictive nature of the drug and because getting off klonopin can be a nightmare. I'll stick with meditating and see what happens with the doxepin. If I need to take klonopin as needed I'll do that.

1 comment:

Daphne said...

As always, you are so brave. I know that you're going to feel much better in a few months. I love you!