Is Mayo Clinic in Minn. have good LLMDs?

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maggiemoo
Regular Member


Date Joined Oct 2008
Total Posts : 56
   Posted 12/9/2008 11:27 PM (GMT -6)   
 
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
Regular Member


Date Joined Jan 2008
Total Posts : 373
   Posted 12/9/2008 11:37 PM (GMT -6)   
Maggiemoo,

I don't want to discourage you but Mayo Clinic, for me, was a major waste of time and money. I thought for sure that they would be my answer. The docs were clueless and did not at all seem interested in my laundry list of mysterious symptoms - one being repeated episodes of anaphylactic shock. So, they told me that I had an idiopathic autoimmune disorder and suggested some antidepressants for a mere $20,000. Total joke! I had already had this same diagnosis at all the top research hospitals in my area. Again, I apologize if this brings you down but I wouldn't want you to go and be disappointed as I was.

Good luck to you.

Runningirl

maggiemoo
Regular Member


Date Joined Oct 2008
Total Posts : 56
   Posted 12/9/2008 11:48 PM (GMT -6)   
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

Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 12/10/2008 5:12 AM (GMT -6)   

I'd seen some nationally recognized doctors when I lived in Chicago and they all basically told me the same thing about the Mayo clinic...it is a good place to go to see a lot of specialists all at the same time and have them discuss your diagnosis after workup, but that their quality of doctor or better could be found in almost every major city. 

I have been told by some doctors (in the minority) that it is a huge waste of time both based on my previous workups that had already been completed and their past experience with other patients.   I have also been told its the place I needed to go by two doctors...and these two doctors were the worst two I had seen over the last two years and where absolutely convinced from day one that I had a mental disorder. 

In hindsight, I'm am 100% happy that I did not go to the Mayo clinic.  As stated above, do you really need to spend $20,000 to be treated in a condescending fashion?  You can get that locally.  smilewinkgrin    Save you energy and money to battle Lyme and coinfections. 

Just my opinion.   Good luck!


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/10/2008 6:39 AM (GMT -6)   
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.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 12/10/2008 11:57 AM (GMT -6)   
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...
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G-J Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/10/2008 1:59 PM (GMT -6)   
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.......................  rolleyes tongue turn smilewinkgrin   shocked   smhair shocked smilewinkgrin turn tongue rolleyes    
I love the little "red" one... this is what my hair looks like almost everyday........... smhair smhair smhair smhair smhair smhair smhair


Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/10/2008 5:18 PM (GMT -6)   
Frango - Well like the guy in UOS said... antibiotics certainly aren't dangerous if one has a fatal infection. I have a theory that if there are any kind of anthrax attacks, etc., the only ones left standing will be us abx soaked Lyme disease patients and the cockroaches.

At least we'll have something to eat.........................eewwwwwwwwwwwwwwww I just grossed myself out!!!!!!!!!!!!!!!!!!!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


maggiemoo
Regular Member


Date Joined Oct 2008
Total Posts : 56
   Posted 12/11/2008 12:06 AM (GMT -6)   
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
 

hiker53
Regular Member


Date Joined Aug 2008
Total Posts : 81
   Posted 12/11/2008 6:03 PM (GMT -6)   
I went to Mayo twice and just got diagnosed with idiopathic myoclonus (small seizure like jerks).  They totally missed lyme despite my protests that it was what I had.
 
Hiker53
 <><


seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 12/12/2008 9:28 AM (GMT -6)   
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.

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 12/13/2008 8:31 AM (GMT -6)   
Like Dr. House says "idiopathic" is short hand for idiot -- "I don't know"

seeingStars I'm on the same thing and like it doxy and biaxin.

Am afraid to change it and am afraid to be off it. Got sick with stomach issues and was off it and guess what I declined quick in a week.

What are we going to do when they deny us our "cure"?

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 12/13/2008 9:43 AM (GMT -6)   
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.

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 12/13/2008 8:46 PM (GMT -6)   
I'm told antibiotics get you well. Diet and exercise keep you there. Am doing fairly well despite numbness lately. Don't know what that's about, but as long as I'm doing okay energy wise and it's just like the feet are asleep while resting then who cares? I DO need to lose 15 to 20 lbs too. Could that be related to poor circulation?
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