Saturday, June 9, 2012
Jaundice and Hemolytic Anemia
I have never been told that I had any liver issues for my entire life. I eat extremely healthily, I NEVER drink and I don't use tylenol products. I have never taken any meds prior to Lyme except short courses of amoxicillin for childhood ear infections. Then last September after I got my 105 fever (shortly after a tick bite) I went to a family doctor. My blood work for numerous conditions all came back normal. All except for an increased bilirubin level. Bilirubin is the enzyme responsible for jaundice. The family doctor said it's a harmless genetic condition (Gilbert's) and not to do anything about it. I had my suspicions.........neither of my parents have Gilbert's syndrome.
My bilirubin levels have fluctuated over the past several months. They go between rare instances where I get a normal level of 0.8 to the extremely common 1.5-3.1 range (abnormal).
A few months ago, my ALT and AST were high so I had to go off all meds for almost a month. Despite staying off everything (including supplements and herbs) my ALT and AST did not drastically drop. At one point, they even raised back up on their own. Then I started meds again slowly beginning with doxycycline and my ALT and AST went down to normal very quickly. This leads me to believe that my ALT/AST elevations were due to an infection that responds well to doxycycline. Most likely erlichia or Lyme. I believe that the bilirubin elevation is also related to an infection.
We decided to stay on a little longer. My LLMD wanted me to go off, but I really wanted to try for a little longer to see if something would improve. He agreed to let me stay on, but if things don't improve, I know he is going to stop the meds immediately.
This week my main symptom is profound exhaustion and weakness. Several days I have had to lie down in the middle of the day. I have absolutely no energy and I am on the verge of collapse. I have never felt this level of weakness before and even though I'm against stopping meds, I seriously considered stopping them myself.
I also noticed a very strong craving. I'm suddenly craving tomatoes with tons of salt which I know is linked to anemia. Upon looking into this further, I discovered that babesia (an infection that my doctor believes I have) along with babesia meds can cause hemolytic anemia. Haemolytic anemia can cause jaundice. This is what I believe is happening.
So I'm not sure what I want to do now. Do I want to go off meds again and put myself at risk of having more unconscious seizures like the last time I went off along with exhaustion and severe headaches? Going off meds might help the jaundice, but then again it might not. Then I will be allowing the babesia to repopulate itself once again. I will have wasted all this time that I spent treating and in a massive herx, and I won't have even eliminated babesia.
I have never made it past 8 weeks of babesia treatment. From what I've read, treatment should continue consistently for at least 120 days (the life cycle of a red blood cell). On the other hand, I am concerned about the weakness. It's very severe. I feel like something is very wrong right now and I don't know if I'm being too risky with my health by pushing to stay on meds.
I get worried because I don't have a lot of experience with meds and medical issues. Lyme is the only medical condition I have ever had. Therefore, I don't have tons of experience with doctors either. I can't tell if my doctor is being overly cautious or if I am not concerned enough. Is it likely for someone in their 20's to have a permanent liver consequence as a result of babesia or medications? If I'm not at risk for permanent damage, I don't think it's a good idea to stop treatment continuously.