Wednesday, June 13, 2012

Mepron Frustration

Well, this week I don't have great news. One of my liver enzymes (bilirubin) is elevated so I have to stop Mepron again. This time I made it 7 weeks. My LLMD says that I will probably only need to stop for about a week. I have to get the bilirubin level down by 25% which will be kind of difficult since this enzyme has always been flagged as high for me even while off all treatment before I even knew I had Lyme or co-infections.

Upon hearing this news, I'm getting kind of frustrated and I feel like why go back on Mepron at all? I'm probably not going to make it long enough to wipe out the infection anyway.

In this week that I'm off from Mepron, all of the new red blood cells that are forming have the potential to become infected at the beginning of their life cycle. Therefore, the protozoa will live on inside the new red blood cells until the end of their life cycle which is typically 120 days.

My theory is that I need to have continuous babesia treatment whether it is Mepron, Malarone or an herb for at least 120 days so that all of the infected red blood cells will have lived their life cycles and any new ones will be protected from infection.

My goal is to use Mepron for the least amount of time possible. I feel that it is a toxic medication and I don't want to keep using it. If I'm going off, I want to be off for good. The starting and stopping is just prolonging the toxicity of using the medication in my opinion.

I am not feeling well. I have been very weak and ill feeling for a long time. I got a glutathione IV this week and I didn't feel much better (that's unusual for me). Last night I had a really strange pounding heartbeat. My joints have also been very painful and my rib cage hurts like broken bones. The exhaustion has not let up yet. My muscles are very painful and sore. Even though I'm tired, I wake up early in the morning. I can't sleep most of the time, and I'm completely exhausted. I was hoping that going off Mepron would give me some temporary relief at least. We'll see.............

My frustration is leading to more OCD. I am so sick of not being able to go for my daily hikes, play music, and concentrate enough to complete tasks for school and work. So even though I feel terrible today, I am going to go running. It will probably take me 10x longer than usual, but it's one thing I'm not giving up.