Friday, July 13, 2012

LLMD Visit

So I had a visit this week with my LLMD to go over my liver results. To my disbelief, my liver enzymes were completely normal. This includes bilirubin which has almost NEVER been in the normal range. I was told by another doctor that the bilirubin elevation was a genetic mutation (Gilbert's Syndrome) but I always had my doubts.

Unfortunately, despite the good news on tests, I am not feeling well whatsoever. This seems to be a common problem for me. I feel better when my liver enzymes are high than when they are low. My weakness is the worst when my liver is normal. I can't understand it.

Lately I cannot make it through the day. I am struggling significantly. I fall asleep between 3 and 7 p.m. and then lie in bed for a few hours before falling asleep again for the night. Then for the entire time I'm awake between (morning and noon) I am so tired that I really can't do anything.

The exception to this exhaustion is right after I get an IV of vitamins and glutathione. Throughout the week I take the vitamins orally, but they don't do anything for my energy or symptoms. If I don't do something active after my IV, I feel like I'm wasting it. I've tried just resting after an IV and then it doesn't make it last any longer so I figure I'll take advantage of my one day of energy to get things done and go jogging or for a really long walk. That's one thing I will NOT give up. I am losing so much muscle and weight, that if I stop that weekly walk or jog I will likely be headed toward becoming bedbound.

I am currently trying a new option which consists of two steroids in extremely low physiological doses for adrenal support. As most with Lyme know steroids are VERY risky when you have Lyme and co-infections because of their immune compromising properties. I worry about taking even a low dose although I know a lot of LLMD's use this dose for adrenal support. So far it is not working for energy. I had EXTREME thirst after the first dose and drank a massive amount, but since then I have returned to my normal thirst level along with my normal level of exhaustion and other symptoms.

I hope something turns around for the better soon. I don't know how much longer I can continue to get worse. I'm afraid that soon some of my symptoms will become irreversible.