My Visit With Infectious Disease MD

My first appointment to an infectious disease doctor was not enlightening. It was extremely uneventful. Aside from him shaking his head in awe as he stated that I shouldn't have been treated for more than the standard 14 days, seeing as that Lyme is easy to treat and "even cases where the Central Nervous System is involved only require 28 days of treatment". I was pretty disappointed in that statement. He also made sure to tell me that I look great so why am I there? After all if someone looks good they can't POSSIBLY feel terrible, can they? Only 80% of common illnesses present underneath the skin! How dare I look good on a work day while trying to make a living and taking time out of my pay to go sit in his office for two hours just to be told I look good. He then ordered some blood work and agreed that maybe there is a complex array of other things going on in my body keeping me from feeling 'well'. He mentioned IVIG, which really interests me since the last time I was mentioned that was upon seeing a specialist in Vermont while in a wheelchair. He said it is a substitute for some people who can't fight illness with their own immunity and might really help in my case. He ordered some blood work to check on my levels for that, and to retest me for Lyme even though he claims "once it tests positive it always tests positive". I'm sure he will write it off as a false negative when it comes back negative like it always has. Aside from the IVIG treatment possibility, he did not recommend or even hint on anything else that might be going on. Apparently there wasn't too much to be concerned about to him since other doctors are managing my other problems. I'm sure he thinks those other problems are not related to each other at all. I even made sure to specify to him that when we say "Lyme Disease" we are referring to the chronic long standing and difficult to treat co-infections as well, which he couldn't fathom being just a clinical diagnosis. This young doctor was the perfect text book of example of a physician playing by the rules who can't bare to think outside of the box. Not the 'know it all' Dr. House type that I was hoping for. At this point I often feel it would be better even to find something else as the cause for all my problems, instead of my Lyme Diagnosis. It feels as if I will be struggling with these symptoms forever.

Neverending Struggle

Since the PICC line came out, every day has been a struggle. The medicines I am on don't seem to touch my symptoms, detoxing is a chore, and my stomach has grown so sensitive. I spend nights nauseas and mornings tired and sore. I search for answers to my questions inside, instead of reaching out. My depression is off and on since a recent break up, and I just keep smiling. How much strength it takes to look in the mirror and say to myself, 'None of it matters, you are beautiful, and no one can even tell you are sick! Now just convince yourself you aren't!'

If it only was that easy. Today was spent in the doctors office again, trying to decide about a case of what feels like walking pneumonia. The Physicians main concern is that liver inflammation can hurt just the same, and a cough could just be irritating a secondary problem. She ordered blood tests and a hundredth ultrasound and recounted how my lungs sounded clear even though they hurt like a helium filled balloon popping. Yet again, I recount how my life is never boring. So in two days I will get the ultrasound and hopefully know by Friday what is going on with my delicate body! I have been waiting for the approval and word of the local organization that is supposed to be supporting and assisting with the local teen lyme support group in order to get the email group started. It has taken a lot longer than it should have! I just hope they get started soon, because I am ready to open it up on my own accord and try it out to see if I can perfect starting good thread conversations. I just wish I had more patience and energy to undertake such a huge responsibility. This is why I need some support and help from healthy people! I should be on the radio the week of the WLNH Children's Auction( 98.3) speaking about partners in health and the Lyme Disease a little bit. Hopefully I can hear the voice clip before then because I haven't gotten any word on that yet either. Crossing my fingers! So this is the extent of my current situation, still struggling and sick without answers, growing new hope, meeting new people, starting my part time job again soon, and hoping to finish school before the end of the summer. I need serious prayer to get me through such activities so I can keep remembering I have a purpose and need to keep reaching out for it!