The last visit to my LLMD was at least a

year ago. That was when she told me the

chances of curing the lyme once it reaches a

stage like mine is less than 5%. Since then

I've had my port taken out and stopped all

therapy. The only option left, orals, tore

me up ... so I stopped. I figured if the

meds. did mothing good, dump 'em. Anyone

else dealing this way? Life is actually

better W/O right now & I'm happy ... even w/

monthly "lyme time" as I call it. Any

comments or suggestions greatly appreciated

Did you consult another LLMD?

You say oral abx tore you up. Which one(s)?
Did you always take with food?

Please tell us more.

Janet

My feeling is that if a lymie can function at a level that is satisfactory without meds, then it is their choice whether to go on meds or back on meds, or to do without. The risk is that it will get worse. It can then be retreated, but might do some permanent damage in the meantime.

A doc told me to go off meds for 6 weeks for another lyme test. It was more than 2 months before I got back on antibiotics. In the meantime, damage to my eyesight was set in motion, with the result that my left eye is now permanently damaged, with a threat of more to come. More meds will not undo this damage. So, naturally, I am most reluctant to try this little experiment again!

You are the only one that can decide whether or not to do without meds.

reason the LLMD said what she did was

because of what happened at the beginning

of my illness. As it happened, about 6

months before the symptoms exploded I was

given a lyme panel test. It was pos.,

but no one told me... Then the symptoms came

They started w/ the neuro. stuff. I had no

money so I had to go to a clinic. They

decided I has MS and pumped me full of

steroids. Ever since, I have not come up w/

a pos. antibody test. I HAVE had a pos.C-6

peptide test (biopsy). And at least 4 - 6

pos. PCR tests (UA and internal biopsy).

I've tried Doxy (oral and IV), Rocephin,

Rocephin & Vanco. combo, Zithromax oral

(usually with other IV meds). I've even

been on Primaxin and tried Flagyl with

something or other. Anyway because all

these failed, She concluded the steroids

must have done something to my immune system

and I may just have to wait for something

new to come along to help. The last oral

I tried was Doxy. Because most of my

problems are mostly still neuro., I had to

be on a really high dose. Even though I

did eat as much as I could w/ it, the nausea

was unbearable. I had to take a high dose

of Tigan 4 times a day plus Zofran 3 times a

day just to make sure I could keep anything

down. So, for now, I'm patiently awaiting

that "something new" to come along. I've

been playing educational games from the 'net

and doing balancing, stretching, and

isometric exercises to try to stay as

strong as possible mentally and physically.

If anyone does know of any LLMD's in central

or south Jersey other than the LDTC I'd

gladly speak to him / her for their advice

on this.

Again, ANY advise will be greatly

appreciated. Thanx

I am reading the rife book and there's lots of lyme insight in there.

I wasn't for that by any blood tests, but

I did have an endoscopy done in '04 where

multiple biopsies were taken. None showed

Babesia, but they did find Bb, 2 different

fungal infections and something called

Mycoplasma fermantans. (LLMD said it was

some bacteria related to "Gulf War

Syndrome"... I just say yuck!)

They also looked for Bartonella, which,

thanks to you, in reviewing my test

results I see they DID find that one. I

don't remember any specific treatment

given for that one. I was placed on

Vfend for the fungal infections, and some

antibiotic (Doxy I think) for the other

"Gulf War" thing. Any info on the

Bartonella definitely needs to be treated!!!!!!!!

You might want to post for info on that over in Medical. You'll get alot more responses. I don't know much about bart, but enough to know that it's serious stuff.