It took a week for us to decide which doctors to see and make appointments, and another week before I could actually see the doctors (partly because I was going out of town for my only trip since deciding to cut out travel and focus on healing, an important work trip).
I left town on Wednesday 11/7/07 not having yet decided on a treatment option and having only seen one doctor, the one who encouraged me to go on antibiotics for an unknown length of time and gave me a 4 month prescription. My husband and I had decided to wait until we got a second opinion before deciding whether to follow his advice. However, I was becoming more and more concerned about my symptoms, which included the beginning of pain in my knees (we had been amazed to see that I had bags of fluid the size of baseballs behind each knee when visiting the doctor) and increasing clumsiness.
I arranged to fill a month of the prescription (oral doxycyclin, 200mg) at the last minute and picked it up at a pharmacy near my destination. I began taking it immediately. The next day I continued to feel worse (jerky movements, clumsiness, fatigue, and, thanks to the antibiotics, extreme nausea at times). However I woke up the following day without back pain. It wasn’t until the pain went away that I realized just how constantly painful my back had been. Unfortunately the relief only lasted a few hours, but occasional pain free hours have continued to occur ever since.
After returning and seeing the local infectious disease experts (the other two doctors), my husband and I decided to switch to IV antibiotics (ceftriaxone, also called rocephin) which we began on Tuesday, 11/13/07 after my PIC line was installed. The clumsiness, etc made us want the strongest possible treatment. This continued for 6 weeks, ending on 12/24/07.
During this same period, I took sacromyces (shown to help the gut flora survive antibiotics, though who knows how effective it is for treatment this strong) and ate yogurt regularly. I also tried to avoid sugar in my diet to help reduce the chance of a yeast infection, and generally ate lots of whole grains. I also continued to receive regular massages.
Finally, I began a daily diary of my symptoms so that I could give better information to my physicians and better track changes. My hope is that this will provide some objective evidence of improvement (or lack there-of). For example, looking back over how many hours I’m sleeping may be a better measure of fatigue than my subjective estimates, which are strongly effected by how optimistic/pessimistic I’m feeling about the situation.