Any LLMD’s at the Mayo Clinic??

Not likely. Everyone I have had discussions with regarding my consideration of going to Mayo told me to a person dont waste your money on them. You need to do what you are most comfortable with but I am so jaded with doctors it did not take much for me to let go of the idea of any doctor at Mayo being helpful. Mayo use to have a good reputation now the reputation they are building is 'arrogance'. If you do not have a 'traditional' illness they will write you off as depressed or lying. I'm sure others may have a different view. I have not personally gone to Mayo (changed my mind after talking to other CFIDS//CFS/FM/ME/Lyme patients so take my info with grain of salt. To me the best responses will be from those who actually sought help at Mayo. I also look forward to hearing if anyone had a positive experience at Mayo and successful treatment.

Hi Roxi60-

Thanks so much for your response. My mom has been helping me pay for my expensive LLMD. She’s thinking that my insurance might cover a Mayo doc better. Fortunately, I LOVE my LLMD! But I sure hope she won’t pooh-pooh him, for financial reasons. I haven’t educated her on the whole Lyme controversy yet. Decided to "let sleeping dogs lay...” for as long as possible.

Best of all would be someone who has actually benefitted from a Mayo Clinic LLMD.
Cynthia

Hi rockinreel-

Thanks for your response and welcome to the site. I’m pretty new to this site as well.

Sounds like you’re making some headway at Mayo so far. Did you see an infectious disease specialist at Mayo? I saw on their website that there are at least two docs with an interest inLyme, but don’t know if any of them are what we call LLMD’s (Lyme Literate M.D.’S) there.

Keep us updated. Best of luck, Cynthia

How long were you at Mayo clinic and what tests did they do while you were there?

I hope you get some answers soon. Did they tell you how long til you get an answer ?

I saw a neurologist at the Mayo Clinic. Was admitted to the hospital after the meeting based on my MRI's. Got the fourth MRI in the Mayo Hospital which showed one lesion shrunk, one grew more, on stayed the same. Also received my second Lumbar Puncture, which came back negative.

They tested me for Lyme on the LP and blood. Third time I've been negative on Lyme. I ordered the Lyme kit from IgeneX Labs to send my blood to them just to ease my mind.

I have so far been diagnosed at the mayo clinic (with further testing to be one) with Cerebral Vasculopathy Disorder. My sister has a vasculitis so the findings aren't far fetched. The brain tissue sample should have exposed a Lyme disease, but it didn't. My Neuro did entertain the idea that I may have Lyme, but doesn't think I have, which I probably don't. I don't know.