Frango- I'm in Missouri. Have a wonderful LLMD in KC. He's actually supporting the idea of my going.
What happened was I was dx'd with lymes 15 years ago. Dr. B found it and I was under his care for 11 years. When my symptoms and tests results showed all were fine, he more or less released me.
Well, I never really got back on my feet. oh sure i was better but not 100%. The theory was that I went 5 years of undiagnosed Lyme, which went into my spinal fluid, so my problems were post Lyme and I had to live with it. Now remember this is before the theory of co-infections.
And I did just that, i lived with the aches and pains and simply felt that was the hand I was dealt.
UNTIL, I started having what appears to be seizure like activity at night. My right side of my body seizes up, my neurologist called it "posturing". It started in my right foot and then 6 months later, it's my right foot and my right arm. One right I postured so hard I sprain my wrist while I was sleeping!!!! and that's with a wrist brace on for carpel tunnel!! You can imagine the looks at the ER!
I saw several different neurologist, had MRI w & w/o contrast and all tests normal. So meanwhile, my left side of my body started jerking, my leg like I'm a "can-can" dancer and my arm like I'm doing tae-bo. (My poor husband, I would kick him and then swipe everything off the night stand)! <him with my leg - the night stand with my arm>
I never thought anything again about my lymes or co-infections. I saw a very well respected neurologist and he said I had: WAS aka: "Weird Ass crap" going on! He's exact words were: "You have some weird ass crap going on" and then followed by "IF I was to take you as a patient I don't know where I would even begin". He said if I had a chance to go to Mayo, go.
This was July and now not only is my right side "posturing" and my left side flail, but now my neck is started my tighten up. I had a sleep study which showed mild to moderate sleep apnea. So got the c-pap and then the follow up oxygen saturation study once I'm home. My saturation drops into the upper 70's with the c-pap! So now I'm on oxygen at night.
My call for an appointment to mayo is followed by a reply that yes they want to see me, but my name is on the wait list and they will call me.
With my saturation problems and the fact that my husband was bruised just sleeping with me, i called my LLMD to see if he had any pull getting me into Mayo. To my surprise, he stated that he believed I had some possible co-infections from the lymes. (I had not seen him for 4 years).
Well, he was right, my labs came back as babesia and i started the mepron/zithro combo.
Mayo called yesterday and they can see me in Feb., I'm just nervous about going and then have them thumb their nose at me and say there is no such thing as lymes and it's co-infections.
Besides, I'm not going to mayo for my lymes, I'm going for my sleep problems= bedtime is really scary for me.
Could the babesia be the cause of my posturing? Is there scar damage from the neuro lyme? What is causing all this. You know what I mean?