Tuesday, September 09, 2008

Kicked out of Infusion Center

Today I got permanently kicked out of the infusion center. I never thought that I would speak those words. My doctor called me into his office to tell me that the head oncologist at the infusion center reviewed my medical records that stated that I was being treated for Lyme disease and he decided that he did not want me to be treated for Lyme disease in his infusion center. The oncologist also stated that he did not approve of IV antibiotics for Lyme disease. Because he did not agree with my treatment, he stopped it. He is an oncologist, not a Lyme specialist. How does he have the right to decide what treatment is best for me. He has not met me. He has not consulted my Lyme doctor. I would have thought that he would at least want to find out if the treatment is helping me. No, instead he just cut me off. I hate that he had the power to change the course of my treatment and therefore of my daily suffering. The financial cost of doing IV antibiotics at home is tremendous. I never thought that a doctor would deny me my treatment. I always thought that the insurance company would be the one to stop it. What has happened to our medical system that we let a cancer doctor decide whether or not a Lyme disease patient needs IV antibiotics? The oncologist might have known that Lyme disease and its treatment is controversial and therefore he did not want anyone getting treated for it at his infusion center. It seems like politics were more important to him than investigating my case. I have the wrong disease! I don't want to be involved in a controversy over the existence of my disease and of its treatment. I just want to feel better. Other patients with other diseases don't have to fight against doctors just to get the treatment they need. I am in shock that I can never go back to the infusion center again. I am angry with the oncologist and yet, at the same time, I am thankful that I received 9 months of treatment. I should be able to get all of the months of treatment that I need but with this crazy illness, I have to be thankful that I even had some treatment.
I was so close to making it through an entire year of IV antibiotics. They cut me off just 2 months before I would have hit the one-year Mark.
Friends are asking me what I am going to do now in regards to my treatment. The truth is I DON'T KNOW. The IV drugs that have been helping me may not be an option now.