LymeNet Flash: Is referral to Mayo Clinic a waste of time?

This is topic Is referral to Mayo Clinic a waste of time? in forum Medical Questions at LymeNet Flash.

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Posted by CLR (Member # 22128) on :

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.

Posted by lymielauren28 (Member # 13742) on :

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:)

Posted by WildCondor (Member # 434) on :

Yes it is a waste of time. They do not treat Lyme there, or know how.

Posted by Abxnomore (Member # 18936) on :

YES, YES, YES. Don't waste your time. Find a good LLMD. You can get help in the "seeking a doctor" section.

Posted by bettyg (Member # 6147) on :

don't go to mayo!! TOO MANY FOLKS HAVE LEFT $100,000 OUT OF POCKET WITH NO DIAGNOSIS OR ANSWERS! [toilet]

Posted by toby67 (Member # 17143) on :

been there done that = sent me home with a pat on the hand just in time for their bills to start rolling in!

Posted by mtree (Member # 14305) on :

CLR...

I just bumped up a thread I started a few months back.....

hope it helps...

[group hug]

mtree

Posted by SashaC (Member # 18968) on :

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!!

Posted by CLR (Member # 22128) on :

Thanks for all the feedback. No Mayo for me.

Posted by Saskat (Member # 20273) on :

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.

Posted by joalo (Member # 12752) on :

Definitely "hold" the Mayo!!! [puke]

Posted by SarBear (Member # 21196) on :

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.

Posted by GraceT (Member # 16558) on :

Mayo Clinic here in AZ is not the right place for Lyme patients to get help.

Posted by karenl (Member # 17753) on :

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.

Posted by bettyg (Member # 6147) on :

glad you are taking our advise; 75% from those who WENT THERE! save your money for our llmds to get you into remission [Smile]

Posted by Trevor1 (Member # 15489) on :

I went to Mayo in AZ little over 2 years ago and got Paxil! haha, save your money.

Posted by Marnie (Member # 773) on :

Yes.

Posted by Tincup (Member # 5829) on :

[Eek!]

HOLD THE MAYO!!

[Eek!]

Posted by aklnwlf (Member # 5960) on :

I went to the Mayo Jacksonville. Took me 2 years to pay off that bill and my diagnosis.....fat! [Mad]

Posted by WildCondor (Member # 434) on :

LOL @ hold the mayo.