Fighting for Treatment

Today I was actually nervous before my appointment with one of my favorite doctors. I had not seen him for a year and a half. He tried to help me for years when I thought that I had Chronic Fatigue Syndrome. What I love about him is that he relies on scientific studies and yet he is also willing to try unconventional drugs and treatments just to see if they help me. If they do not cause harm, then he seems to have the attitude of why not try it. I was nervous today because I had a big question to ask him: Would he prescribe Rocephin, the IV antibiotic, for me to have infused at his medical clinic? I knew that he might not agree that I needed Rocephin. I also knew that the much bigger question would be whether or not he believed that I have Chronic Lyme Disease. He is a rare doctor who follows the infectious disease guidelines and yet thinks for himself. I did not know what direction the appointment would go in. We ended up having a good conversation about my health. He still believes that I truly have Chronic Fatigue Syndrome and not Lyme disease. It is so hard for us to have to persuade and convince the doctors of what is actually wrong with us. It is maddening. As I sat there and he told me that my positive serology for Lyme did not mean anything to him, I started to sweat. Why should I have to defend what is wrong with my body? I just want to get better. I don't care what the doctors call my disease but I want them to help me regain my life. I tried to remain calm and I also subtly shared with him my knowledge about why I did not agree with him. I am proud of myself for making a case for Chronic Lyme and yet focusing on my treatment from his perspective. I hope that he learned something from me. I will be happy if it makes him question what the infectious disease doctors claim. At the end of the appointment, he did agree to try and prescribe the antibiotic for me under the premise that it will help the infections that I have due to Chronic Fatigue Syndrome. Even though I know that I need the drug for Lyme disease, I will not argue over the rational behind prescribing it. I just know that I need it to get better. I felt like I should have been thrilled by his cooperativeness but I just felt numb. I know that even know he is trying to help me, there is a good chance that the insurance company will still refuse to pay for my treatment. They have denied me IV infusion therapy at home because they claim that it is not medically necessary for Lyme disease. I am desperately trying to find Rocephin at a price that is less than $1000 a week. My attempt to circumvent the insurance company's rules and try to get the clinic to give me the antibiotics as a procedure is my way of being creative. This disease causes us to have to fight on so many levels. We have to fight to prove that there is actually something wrong with us, then we have to fight the doctors who say that Chronic Lyme does not exist, and finally, we have to fight the insurance companies who refuse to pay for our treatment since supposedly our disease does not exist and therefore they have no obligation to pay for our treatment. Do you all see how insane this is? We, the debilitated patients, have to do all of the work to fight for our treatment. My appointment today really highlighted how we have to argue, persuade, and fight just to be given access to appropriate treatments.