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Joined: Sep 2008
Posts: 745
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Decorated_AS_Kicker
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Decorated_AS_Kicker
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Joined: Sep 2008
Posts: 745
I take the nuerotin (with the haze) to help the Trigeminal Nueragia. It does help. I also have the TMJ from a childhood injury. For me, the jaw injury triggered all of this. But the Trigeminal does run in the family. So I got a double whammy. The meds really help. Now it is like a dull ache vs. agony and tears. If you don't want to do the dental surgeries (which I don't) try the meds. I am on 1200 mgs.though. So that isn't great but for me its better than the surgery at this point. Good luck with whatever way you decide to go.

Joined: Mar 2007
Posts: 1,461
Silver_AS_Kicker
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Patty, thank you for replying. I'll PM you for more information seeing I've already hijacked this post.


Kind Regards,
Jay

Almost all of us long for peace and freedom; but very few of us have much enthusiasm for the thoughts, feelings, and actions that make for peace and freedom. - Aldous Huxley

Was the government to prescribe to us our medicine and diet, our bodies would be in such keeping as our souls are now. - Thomas Jefferson
Joined: Aug 2003
Posts: 2,717
ironchef
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ironchef
Joined: Aug 2003
Posts: 2,717
aloha jaybird

it's been a long time...so somes of the details maybe a little foggy.

the standard lyme antibody test is considered in the lyme community as just about worthless.
it shows your body as having mounted a defense- in other words it'll show you HAD lyme
as well as showing you might have it.

i get a copy of every blood test...it's something i've done since leaving rheumy #3...just like
to read it for myself...my current doctor asked me to explain ESR test to him so he could
evaluate whether it was worthwhile to copy me or not...i don't get that question nowadays.

iirc...the western blot is the cdc preferred diagnostic determinate for lyme; although the lyme
net folks have other ones they believe better, more useful etc.
iirc...the western blot has about 10/12/14 igm/iga bands and six is required for a lyme diagnosis...btw...i had three positive bands and two 'undeterminate' readings.

there are many many questions in the medical world about the question of causality of what
you may have going on and each medical speciality has its own jargon and specialized terms
for the things they deal with...some use different names to describe the same stuff...and quite
frankly it's like reading something translated from sanscrit into greek then into latin and thence
again into english...then again like the king james bible, sometimes your translator decides
to get poetic about the reading...

i don't believe there's a true wit of difference between some of the names...then again like
with AS there's the spondylosis, spondylitis, undifferentiated Spa, b27 positive spondylarthropy, A.S., etc etc etc (( i do believe in my heart there is some difference between
the disease onset between b27 positives and negatives.)) JMHO...

i read on a lyme networking site called lymenet for several years but again it was years ago.
if there were easy/more rapid diagnosis and heavy treatment done quickly there would
probably be less cronic lyme disease; from my reading and my friend's experience i've
come to believe that the cronic version is a result of (beware of assuming causality in
anything) of a recurrence of disease activity after unsucessful treatment(s)...

i can't expain your dental stuff...i do know AS can fuse your teeth...i had several teeth
extracted at one time and had shards of plasticene type stuff coming out of my gums
for weeks afterword ( another oral sugeon said to me 'he wouldn't let that happen' but
sometimes if the don't use the big suckie thingee 'it happens'...

if you're concerned about lyme there was a group called lymenet out here in cyberland
probably still there..warning they'll scare you to death...and believe it or not there
is one state where you have to bring the dead tick for testing before they'll diagnose...
aargh !

good luck.
i'd avaoid neurologists...i'd look for a lyme literate rehumatologist...they exist


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