Friday, August 10, 2012

LLMD Appointment Update

Thank goodness! My LLMD appointment went well. I was SO worried about my appointment this week because at my last appointment, my LLMD was very discouraged and I thought he might  send me to someone else (which I did not want at all).

On the way to my appointment, I got so nervous that I was throwing up in the car. I initially thought it was nerves from the anxiety I had. Then I started getting nauseous again later on in the day and I remembered that I was also throwing up on a walk a few days ago. I also had a really bad headache yesterday which is very unusual for me while I'm on medications. My back was killing me all along the joints. That's another symptom that I've never had before.

Sure enough, as soon as I started to eat again last week, my liver enzymes started to go up. I don't know if it's eating, bromelain or the one normal test I had a few weeks ago was a lab error. Somehow I need to figure out something before my enzymes get too high again. 

I'm going to be starting Plaquenil. I'm pretty nervous about that one. I do not like the risk of retinal damage associated with it. I've heard it's a very rare risk, but I still don't think the track record of plaquenil makes it a good choice. I have not heard of a ton of people who have had drastic improvement just by adding plaquenil. To me it seems like a supportive drug to increase the effectiveness of zith or biaxin (neither of which I'm on) or a weak cyst buster. I think I would have rather taken Flagyl or Tindamax (even though I used to be totally against those for the cancer risk). I figure why try the weakest thing? I would rather try the strongest thing now while I'm still somewhat functional. I'm getting weaker and I don't want to wait until I'm too physically exhausted to handle those meds.

My LLMD did not agree. He wants me to try this first before something stronger. He also wants me to start weaning off of Cortef/Florinef already even though he said I'm still having adrenal problems.  He doesn't want me using those long-term and then my adrenals completely become irreparable. Going off Cortef/Florinef will be hard for me because it was helping me get through the day, but I will try to do it. I am just happy that I had a positive appointment. I will pretty much try anything at this point.