I've had 5 months of illness with 95% of lymes symptoms. Had lyme titer with negative result, went to University of Chicago, negative result again with titer. Asked the doctor to do spinal, not getting anywhere with any docs!! Was diagnosed with thyroid problem, however, I have been on antibiotics & steriods off & on the last 5 months.. I was bit by a tick, then got rashes for 3 months along with bed ridden illness.. I'll take any advice, helpless in Indiana!!
Posted by Lymetoo (Member # 743) on :
Welcome! Stay away from major hospitals! They are clueless!! [as you have found!]
Stay away from spinal taps. They are about 20% accurate in finding Lyme disease. [like hunting for a needle in a haystack.]
Stay away from steroids!! Big issue there which will put you deeper into the cave!
There aren't any LLMD's in IN that are willing to treat Lyme disease.
Lymetoo's advice is so right on ,,,that it bears reading three more times.
My advice is DO that right now,,,read three times and follow scrupleously!!!
And IF she refered YOU to an LLMD,,,dont think or blink twice,,just make the appointment and GET there!!!!
She will NEVER lead you astray,I PROMISE!!!!
Stay around, read info, learn all you can,,,and ask questions and support on medical or support boards!!
With THIS disease,,,go FIRST CLASS on LLMD's,,,it is the ONLY way!!! Travel as far as you must!!!
Take solace you arent on other side of the world like poster looking for the kids LLMD on this same page.
Stay out of duck motels(hospitals), stay away from steroids, AND NO spinal taps!!!!
We all think there should be a lyme litterate MD living right 'next-door' to us but alas,,,not to be found!!!AND get well,,,says--just don--
Posted by Michele (Member # 13669) on :
I too am new here and live in Indiana. I have heard great things of a LLMD named Dr. C in Springfield, MO. Looked into an appt but it is really expensive.
I am curious to know why everyone says to stay away from steroids. My family doc has had me on a dose pac and one shot that lasted 30 days. I feel better while on them but when I come off of them I feel terrible. Any insight???
Best of luck to you and your recovery.
Posted by sixgoofykids (Member # 11141) on :
Michele, steroids drive the infection deeper and make it much more difficult to treat.
I hear good things about Dr. C in Missouri. I live in Ohio and travel to NY for treatment. There just isn't anyone in Ohio and Indiana willing to treat right now.
Posted by hopingandpraying (Member # 9256) on :
Michele,
Steroids suppress the immune system so it doesn't work the way it should (i.e. killing off the bacteria). Lyme disease gets worse on them.
Go where the LLMD's are (even if it is expensive and you need to travel). You MUST take your healthcare into your own hands.
You CANNOT wait around for some useless duck to waste your time and money (they'll probably tell you "it's all in your head"!!!!)
Take it from someone who knows ("Been there, done that!"). God bless and I wish you well.
Posted by map1131 (Member # 2022) on :
Jane, did you get alot of info? Do you need any more opinions? I'm in Louisville, KY.
Pam
Posted by kristins88 (Member # 14303) on :
I too live in Indiana. I have been trying to find a LLMD for months now. I have been all over the internet trying to find someone who I can see even several hours away. I had an EM rash and flu symptoms in Oct of 2006. I was sent to a derm who did a biop of the bite and determined that it was a tick bite. He gave me some antibiotics (only a 3 week course) and didn't inform me at all about Lyme. I thought I was cured. I felt like crap for a long time and finally started doning research and gaining knowledge about Lyme. I went back to my doc who ran tests (ELISA included) and determined that I was fine. I have a very high deductable on my insurance and no money. these tests put me in debt. I can't afford to keep seeing docs and testing for all sorts of things. I KNOW I have lyme, I even have pics of my rash but my docs won't treat me. Please anyone who can help!!! I need a doc. who I know will treat me upon seeing him/her I can't afford to keep this game up and I just need relief of my symptoms. Anyone who can help me please email me!!! thanks too all!!!
Kristin
Posted by jennyflyer (Member # 12792) on :
If someone can recommend a LLMD who will do monthly phone appts after the initial consultation, then you could travel to say NY for the initial consult and then just do the phone consults thereafter.
I am in NJ and I don't believe my LLMD does phone consults.
Anyone see a LLMD that will do phone consults after the initial visit? And whose consultation fee isn't several hundred dollars?
Posted by map1131 (Member # 2022) on :
Kristin, where are you in Indiana? I'm in Louisville, KY. Are you close? Or are you closer to northern Indiana, middle, southern?
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