Well, I went to the doctor

CFD 333

As the title says, I went to the Tick Borne Illness Center in Chadds Ford, PA. To give you a little history into my illness, I've been sick since September, 2003 and have since then been diagnosed with Lyme Disease via Western Blot/Elisa. My syptoms were and still are mostly neurological (fatigue, panic attacks, constant anxiety, brain fog). I was probably undertreated in the past with 1gm IV Rocephin for 6 weeks and Doxycyline 200mg twice daily for 6 weeks after that. I responded only slightly but then relapse a few months later (don't know if it was coincidence or not). I figured I would go see Dr. Schuchman since i've heard some things about him from other forums. He explained to me that the IV Rocephin dose was half what it should have been and that he doesn't believe the doxycycline would help me at all at this point. Of course, he wants to make sure that I actually still have Lyme Disease bacteria or any other possible co-infections. He is doing the PCR test on blood and urine to try and detect the actual presence of Borrelia B. and that he won't treat me until I get a positive test. His reasoning was, if the organism is there, eventually it will show up. If it doesn't, then he believes that instead of throwing antibiotics at the problem we must do something else.

After the visit, I must say that I'm conflicted. Should I put all my trust into this one test? I'd have to say no, obviously, since I know none of the tests can be completely reliable. Of course, a year ago if the Western Blot/Elisa tests didn't show positive, I would have never even considered Lyme disease ever again! So this leaves me wondering now. We discussed that there are several cases where after appropriate treatments, there have been times where patients symptoms did not resolve until years later, but they did so without further antibiotic use. So what gives? What is actually going on? Well, he informed me that certain immunological processes may have been set in action by the bacteria that don't go away just because it has been eradicated. This being coined "post-Lyme syndrome", which may exist or may not, no one really knows, but is really the immune system gone 'haywire'. I had a friend who was treated for a year with only oral antibiotics and it still took her an additional 3-4 years without anymore medications before all her symptoms resolved...but they did in fact resolve completely and she was much more sick than I am! So what happened with her? Did she really need all the medicine or did she in fact have a syndrome that just needed to resolve on its own? Makes you wonder doesn't it? I'm getting to the point where I would rather just see a Chronic Fatigue doctor than a Lyme disease doctor. At least they can help manage my symptoms for now until they eventually disappear on there own. Am I wrong for thinking this way? Is this just frustration talking? Who knows...all I know is one day I was just fine and the next I wasn't and haven't been since. You know, I just can't shake the feeling that more Rocephin may damage my body further...i know this is possible. Why take the risks and what if the insurance company battles me on this? Why not just use oral medications? What's the big deal? If you don't even know if I truely have Lyme disease, why should I take such risks?