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anyone have encephelytis/how is it diagnosed.

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Posted 12/28/2011 3:38 AM (GMT 0)
Hi all
late stage lyme 15 yrs. no treatment since 2002. cant find LLD. it is unfortunate that even with all out lists of LLD. i still cant find one who will diagnose clinical or send my test to Igenix.
i am being sent to a neurologist. horrific head pain on the right side of my head. they want to rule out encephelytis.
anyone have experience with this. has anyone had enceph?
what were your symptoms and test done to confirm.
letgo, thanks.
Posted 12/28/2011 11:16 AM (GMT 0)
My take on encephalitis is that it's a catch-all for any brain inflammation. Bodily inflammation often includes brain inflammation (encephalitis ) and this is common in Lyme
Heck, even a 'normal' headache can be minor encephalitis. That's why folks take NSAIDs like ibuprofen for a headache. IMO you will go on a lot of these wild goose chases with other docs. You need an LLMD. But, it is odd that you mention having seen an "LLD" that they do not diagnose Lyme. How many have you seen, pray tell?
Posted 12/28/2011 4:59 PM (GMT 0)
since 1996 i have seen over 50 doctors. i stopped in 2002. from a to z. many times over. the ones whoe refused to read the info i brought to them said lyme did not do this, the ones who agreed lyme did these things, said it was too late. i needed to live with it. only tx dr was in ft myers. he worked longdistance with Dr Shoemaker. cholesteramine/antibx tx for almost 2 years brought me out of suicidal pain. but i cant find this dr anywhere. the last time i saw him he was completly different. he did a 360 and said i didnt have ld anymore and he couldnt help me. he was so abrupt and rude. out of character for a caring man who helped me for 2 years. license issue? divorce? who knows. he never letr me come back. the doctors on the assoc pages give names of drs i have seen in town. they are not LLD. i will keep searching. i live in bradenton Fl. (near tampa) if anyone knows someone
willing to work with shoemkr or at least good LLD. i was given a couple of names but cant find where i wrote them down.thanks, letgo
Posted 12/28/2011 5:35 PM (GMT 0)
Hi Letgo,
I have had the symptoms of enchephilitis and of menegitis, thanks to Lyme & company! Although I never did go to a physician or get any kind of tests done. I just figured "Why?" They won't know what to do about it since it's from the Tick-borne infections and they don't/won't even recognize that set of infections!"

I have had such massive pain in my head/brain/neck on several occasions and it's all I can do to get to the next day, and then the next day, until I got past those symptoms as there was no pain killer out there that I was willing to take, that could even touch that kind of pain. I tried a whole lot of them. Actually, the only thing I have found that helps that kind of pain for me has been acupuncture. It has also been successful in stopping those symptoms from becoming another full-blown episode twice now!

You might find these article to be helpful:
~www.cordingleyneurology.com/meningitisandencephalitis.html

~www.saltigo.com/fileadmin/downloads/saltidin/tickborne.pdf

This last one is the one I would recommend the most, as it is written with the perspective of having menegitis/encephalitis caused by Lyme disease. This is pretty important in my eyes.
http://www.angelfire.com/biz/romarkaraoke/lymeart.html

I hope this helps a bit!! :-)
Posted 12/28/2011 6:29 PM (GMT 0)
Sorry to hear all that letgo....you definitely need to find a REAL LLMD and get treated for Lyme the correct way. I am not in FL or I'd try and make a suggestion - maybe you'll get some feedback from this forum. It seems the neurologist is a waste of time if you are certain of Lyme....again, just my 2c. As many who have 'unexplained" things happening that turns out to be Lyme, you can see that mainstream docs don't have a clue. I had the same experience 35 years ago - many docs and no firm diagnosis.

Then they just said it was all in my head and referred me to therapy and anti-depressants (which did not work!). All my Lyme flares since that time were then assumed by me to be just recurrent anxiety/depression. FINALLY, just this year, I was tested and diagnosied with Lyme and treated properly. It's almost as, if you have long-term Lyme, regular doctors are useless anymore - except, perhaps in the case of trauma/injury. Otherwise, you will be forever trapped in a never-ending wild goose chase.

Please try and find a real LLMD - that's the path to a cure....
Posted 12/29/2011 2:03 AM (GMT 0)
thanks yazzer. good advice!letgo
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