Posted 2/7/2009 6:03 PM (GMT -7)
I took antibiotics on and off for about 4 years. I had neuro Lyme with severe cognitive problems and I kept losing the use of my left hand and left leg. I noticed slight improvement in some symptoms after a few weeks of oral antibiotics. This started about 18 years ago. I had 3 weeks of IV Rocephin somewhere along the way.
My docs would have me on an antibiotic until most of the symptoms went away, then I'd stop and see what happened. Usually everything would come back in less than a month. Then we'd start all over again, sometime with the same anitbiotic, sometimes we'd try something new. Eventually, I stopped improving and I didn't relapse when I stopped antibiotics. It was a very sloooow process.
At that point I was told I had (insert your favorite post Lyme diagnosis here) and it was permanent. I have never had a return of my worst symptoms but I never got back to normal either.
The pain greatly decreased during treatment but it took a long time. I still have "fibromyalgia" pain but it's tolerable.