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.
Posted by bettyg (Member # 6147) on :
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
if not, try white lesions on brain
good luck; sorry to hear this! Posted by AZURE WISH (Member # 804) on :
I dont know what to tell you about the brain lesions...
but I was wondering if you have been tested/treated for coinfections?
because I had started making progress with the lyme and the I started getting worse...
at first primarily my balance ... Most of the time I could catch myself on something but a couple times I even ended up on the floor...
anyway for me I think this is part of the babs...
I also think that the babs is why I have never been able to recover completely.
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