posted
I am having real difficulties now and I need your advice. Am an oldtimer but still with some serious problems.
Have 40 lesions in the cerebellar region, also the frontal lobes. My LLMD said it was lyme caused, the "SPECIALISTS" (infectious disease, neurologists, cardiologists, etc) all say, it isn't lyme, or if it was, it is burned out by now. BUT they cannot give a reason why my symtoms are getting so bad now.
Sorry this is long. I was on steady antibiotics for 1.5 years, mepron/zith and/or flaygl/ketek. Went off for a while, back on, etc. after that. OK Guys, I do need your advice. I have been on here forever, but lately, not signing in. Thought I could manage Ha!
I am now very off-balance, need to walk with hiking sticks, must avoid crowds, noise, you know the routine. The progression in the past 3 months has been so remarkable it is scary.
LLMD says the lesions are permanent now...but perhaps I could try another 3 YEARS of antibiotics to get rid of the cysts which may stop more damage. NOTE THE "MAY". He also gave me a prescription for zith and said, 5 days on, 5 days off for forever...may help you maintain. Have you dealt with this sort of prognosis and prescription?
No-one here will give me intavenous drugs....oH my God, what do I do now?
Thanks for any ideas you may have.
Posts: 190 | From BC Canada | Registered: Jul 2004
| IP: Logged |
bettyg
Unregistered
posted
uffda! since i'm one of the very few on here with NO experience, here's my suggestion for you if you are still on here!
use the SEARCH feature, found at top under NEW POST
type in BRAIN LESIONS MEDICAL SUBJECT LINE
ANY DATE; make sure you EDIT MY PROFILE to get the LONGEST period of time vs. default!
leave membership no. blank, and hit enter
read all posts; if none; show BODY TEXT VS. SUBJECT line; leave everything else the same
hopefully you'll get some posts; it's been discussed a lot
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/