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.
I have this condition called ACA right now on my upper stomach, low back, and around some of my feet after taking a bout of Clindamycin for a sinus infection not too long ago. It was the first bit of antibiotics since I moved to Georgia in January of 2015, and I now know that, due to a myriad of arising symptoms, I am not cured and do need to pursue further treatment. I see an infectious Disease Dr down here for the first time next week, after being demanded to see one by my GYN Dr. who is very sympathetic to all I have been through since I was 8 years old. She believes I have Endometriosis as a result from my Lyme disease, and I will be undergoing exploratory surgery in December to clean that up and get a definitive diagnosis. She also believes that my carpal tunnel, back arthritis, IBS, and much more is involved around the chronic disease since I stopped treatment in December 2014. This is the first time I have discussed this to my Facebook friends in over a year, and also a real wake up call that I am not out of the woods yet. I try to keep updates on my Facebook as I know many people suffering find comfort in reading others' stories.