Well, achey. You may not like my reply. Five months ago I got my Lyme test results. Have been being treated on and off by me PMD (who I greatly respect and would not give up for the world...he speaks to me like the intelligent individual I am [err...used to be??]) Am now just finishing up my fourth week of IV Rocephin. Possibly very long story hopefully made a little shorter....I went to ID doc today who told me I did not have Lyme disease because I didn't meet CDC guidelines (based solely on my IgG and IgM tests (not taking into consideration my myriad of neurologic/cognitive symptoms) and recommended I return to my neurologist for a lumbar puncture while not even offering any suggestion, guess or anything as to what in the world what might be causing my symptoms other than that there were certain things she would test for and certain things she would not bother to test for since there would be nothing they could do for me if they were positive (keeping in mind I am a 43-y/o woman, still have hopefully half my life ahead of me.
Needless to say I was a little upset by this and fortunately already had an appointnment scheduled with my PCP for later today....
Shorter story, sorry...in agreement with my PCP's recommendations, going to continue on another 28 day course of IV Rocephin based on recent Columbia/PSL (BRAND NEW 11/2/04 release) that shows that up to 10 months of IV Rocephin helpful for advanced Lyme. He agrees with me that she's obviously a physician who's not good at "thinking outside the box" and that I definitely fit the CDC criteria for Lyme disease.
Sorry....did I mention I have Lyme disease?
In answer to your question...I think you're going about things the only way we can. Read all you can from "good" "reputable" sources, be informed. Had I not learned all I have over the last few months about Lyme, I probably would have left that doctor's office this morning and shot myself because I'd have believed that I've been going through this hell for the last five months and now that I think there may be a light at the end of the tunnel, it is a train that is heading straight for me!
The best advice I can give you...in hindsight, I tried to maintain a full-time job, run my husband's business and do our personal finances. I did all that up until two weeks ago when I had a "meltdown." I have now given up being superwoman and have resigned myself to muddling by with just paying our bills on time and getting the rest, etc. I need and taking care of myself so that I can get better.
Let me know how the novel works. I used to love to read but don't think I could stay awake long enough or focus long enough or remember anything long enough to enjoy it.
Best of luck to you!