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
Thanx
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.
Some people achieve a good level of functioning only with meds and they choose to continue for that reason, even without knowing that treatment will result in symptoms going away entirely. Sort of like people with AIDS and diabetes have to keep treating to have quality of life/stay alive.
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oops!
Lymetutu
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.
Janet
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oops!
Lymetutu
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?
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.
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oops!
Lymetutu