Is Mayo Clinic in Minn. have good LLMDs?

 

I am interested if anyone has had any experience with the doctors at Mayo Clinic in Rochester, Minnesota.

Prior to having my DX of babesia, i was having some cause unknown sleep problems and while exhausting the doctors in my area I requested a consult with the sleep study docs at Mayo Clinic. 

This morning the clinic called and they can see me in February for studies on my sleep problems and I wandered how supportive they might be with the world of tick borne diseases.  

I have a WONDERFUL LLMD but would hate to go the Mayo and be surrounded by docs who tell me I don't have babesia or effects of the chronic Lymes.

Awaiting your reply,

maggie

runningiri,
thank you for your input. I don't have thousands of dollars to toss out the window nor do I have time to go and sit for tests and labs I don't need. I know I have some serious sleep problems, hence is't almost midnight and I'm still awake.
thanks
maggie

I went to the Mayo in Jacksonville Fl. They basically confirmed my LD diagnosis (because I brought them all my positive LD tests) and referred me to a Rheumy at USF medical center. This was about 4-5 years ago.

Razzle said...
I wasted a bundle of $$ at Mayo in 2004. They told me I had IBS (that's embarrassed doctor speak for "I Be Stumped") and wanted me to see a pshrink (that's silly talk for "It's all in your head!"). Someone later told me Mayo's primary mission with patients is to determine whether or not they have a "Real" disease or whether the symptoms, etc., are psychological in origin. The waiting area by the psychologists' office was completely full when I was there...

THIS REALLY GAVE ME THE GIGGLES.......................         

I love the little "red" one... this is what my hair looks like almost everyday...........

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?

maggie

 

Maggie- you must see the same doc I saw back in august. It doesn't surprise me he'd want to send you to mayo. When I saw him he didn't really seem to want to get down to what was really bugging me. He told me to stay with my other doctor and his advice was to find a drug combo that works and stay on it. I went there hoping he could read my symptoms better and advise my doc and me what combo would be good. He didn't. He tested my for the top 2 bart strands igm/igg and babs. They came back neg. but my cd57 came back 13 so he wrote me a letter saying my illness all came down to lyme. I feel this was very irresponsible of him. He is infectious disease doc. He should know there are many strands of bart and yet because the 2 tests came back neg. I didn't have it according to him. Yet he was told my history of months on great lyme meds like IV rocephin, IV doxy, Ceftin, monocycline, the list goes on and I still wasn't getting better. I had almost 1 1/2 years of abx and still was not showing much improvement. I told him that if you take me off abx I go down hill within 4 days. That's not lyme. Lyme works much slower. Anyway, I hope he is working better for you than he did for me. My regular doc has me on biaxin, doxy, and hydroychloriquin and I am seeing a huge difference. No thanks to Dr. B.


There's a woman in my lyme support group who saw him only and he kept her on oral doxy for almost 2 years and added diflucan in there towards the end. He tested her cd57 towards the end of the 2 years and it came back in the 200's so he told here she was in remission and released her. 3-4 months later she started getting pressure in her head and spine like when she first got sick. She e-mailed him and he sent her a prescrip for diflucan only. He doesn't want to deal with her because her bab test came back normal and she has high cd57. I don't know what her # would be now. Anyway, she had to go beg a doc here in town to give her amoxi. and he gave her 3 weeks worth. We all know that's not enough.

I hope he turns out to be the perfect doc for you. I wish only positive things for you but I just want you to know that I wouldn't put too much faith in him to get you thru this totally.

Good luck.

Unless the new people going into to office want government in our business, hopefully buying from overseas without a priscrip will still be available. I would definately go that route rather than take no abx. I've seen what happens when I'm not on the right meds and you might as well check me into a nursing home. I'm only 35. Anyway, I think we just need a lot of time on the right meds and we'll get to at least remission if not something better.