posted
I have several family members and colleagues who are encouraging me to get a referral to Mayo Clinic for a "complete work-up" and an answer to what is causing my symptoms.
I've had 2 MRI's, 2 EEG's, EKG, ECG, blood work, full exam by a neurologist, spinal tap, etc. Everything "normal". (Except for the tick bite and development of significant neuro symptoms 7-10 days later). Positive test for Ehrlichiosis and "equivocal" for Lyme.
What are the thoughts of this group on said referral? Is it a waste of time?
I'm still trying to get into an LLMD, but the waiting list is long.
Posts: 28 | From Kansas | Registered: Aug 2009
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Stay away from the Mayo Clinic. They are extremely anti-lyme. The only thing they're good for is running a bunch of expensive tests and giving out useless, blanket diagnosis' like fibromyalgia or chronic fatigue. Then they'll just refer you to some pain management specialist and shove some antidepressants at you.
If you remember the tick bite AND you developed symptoms shortly after AND have a positive Ehrlichiosis WITH the equivocal Lyme then I would say with absolute certainty that you do in fact have Lyme and the only person who can help you is an LLMD.
I wish I had a different answer for you...I wish we could go to any doctor in the country and have our symptoms and illness recognized for what it really is - Lyme. Unfortunately we're just not there yet.
Hang in there for the appt. with the LLMD. The wait will be worth it, I promise:)
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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WildCondor
Unregistered
posted
Yes it is a waste of time. They do not treat Lyme there, or know how.
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
YES, YES, YES. Don't waste your time. Find a good LLMD. You can get help in the "seeking a doctor" section.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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bettyg
Unregistered
posted
don't go to mayo!! TOO MANY FOLKS HAVE LEFT $100,000 OUT OF POCKET WITH NO DIAGNOSIS OR ANSWERS!
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toby67
Unregistered
posted
been there done that = sent me home with a pat on the hand just in time for their bills to start rolling in!
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I just bumped up a thread I started a few months back.....
hope it helps...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
Complete, absolute waste of time and money!!Unless I accept their diagnosis that I am imagining all my symptoms, despite two + Western blots! And my daughter's postive Igenex testing... I am still disgusted by the entire experience I had there!!
Posts: 151 | From SW US | Registered: Feb 2009
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posted
I'm a latecomer to this thread, but, yes, Mayo was not great.
So many friends and family members told me to go there to get the proverbial "complete work up."
They told me I had RA.
I don't.
I got an LLMD.
Best wishes.
Posts: 55 | From US | Registered: May 2009
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Definitely "hold" the Mayo!!!
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
DO NOT GO! I went down to the Mayo, spent $60,000 and went from them telling me I have cancer, and when that came back negative suddenly it went to I was crazy! Not worth the time or effort.
Posts: 49 | From Minnesota | Registered: Jul 2009
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posted
Mayo Clinic here in AZ is not the right place for Lyme patients to get help.
Posts: 212 | From Arizona | Registered: Jul 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Mayo Rochester is not good for lyme either, they tell you you are depressed and charge you 60,000.
I have sent them 2007 all my records and labs to better treat other patients in the future, all knowledge about co-infections ( best tests and doctors) but they are not willing to learn!!!
They will have a law suit one day, when the right person comes. You can wait for that.
Posts: 1834 | From US | Registered: Oct 2008
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bettyg
Unregistered
posted
glad you are taking our advise; 75% from those who WENT THERE! save your money for our llmds to get you into remission
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posted
I went to Mayo in AZ little over 2 years ago and got Paxil! haha, save your money.
Posts: 59 | From Arizona | Registered: May 2008
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Yes.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
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