My husband keeps bugging me about the possibility of going to Mayo Clinic for Lyme treatment (if Infusio doesn't work out). I told him I've never heard of anyone going to Mayo for Lyme treatment. He says they're the big guys! And I'm like, yeah, I don't know. It appears their main mode of treatment is antibiotics. I'm 5 years into Lyme. I don't think antibiotics are an option. TBH, I'm not really willing to try.

Has anyone gone to Mayo and if so can you share your experiences? Do you feel better?

Totally agree with astroman. I went to Mayo four years ago to seek help. Despite the fact I had lost so much collagen and so many symptoms pointed to Lyme Disease, the doctors there dismissed the thought. They did bring in a group of medical students to "observe" me with the loss of collagen/fat.

When I asked why I had lost so much collagen or fat, the doctors simply told me "it is idiopathic." That meant they had not idea. Also, the dietician recommended a plan to gain weight - most of which went against a Lyme diet - breads, pasta, etc...

The Mayo Clinic is very good for different health issues. Lyme Disease is not one of them, from my experience.

I had a terrible personal experience with Mayo. I know many other lyme patients who had bad experiences as well. I saw an ID doc there, and he basically started yelling at me, saying I didn't have the infections, that I shouldn't take any antimicrobials, etc. His reaction was surprising, to say the least. I was just beginning to understand my health issues but was naive to all the lyme controversies.

Another doc there kept insisting I had chronic fatigue even though he had to look up the definition of that disease in front of my eyes because he was clueless on how it was defined. This same doctor also tried to convince me that my chronically swollen lymph nodes at the top of my jawline (under ears) were just bone because there are no lymph nodes there (according to him).

Anyhow, I was blindsided with my visit to Mayo. I was treated like a monstrous idiot, it was beyond insulting. They didn't even offer any alternatives except CFS dx and just need to rest. I'd been doing that for years already and hadn't gotten better. I'm willing to bet if I'd continued seeing them they would have put me on mental rx.

I agree with other comments, for most conditions Mayo is good. For lyme they are beyond awful.

I would venture a wild guess and echo everyone's sentiments here and bet that they would tell you "it's all in your head" or any of the above IDSA groupthinks mentioned, and that somehow they just can't fathom that an infection or group of infections can cause all of these symptoms. Maybe they are all brainwashed by big pharma to push Sx-alleviating drugs and get their big fat paychecks from pushing all the mental band-aid Rx's instead of actually... you know, trying to get to the root of diseases and cure people. I'm starting to wonder if med school teaches morals anymore, no offense to MDs who do the actual work and help people by understanding Lyme n Co and Friends because I know you are out there and I love you.

I had a similar "teaching-all-the-interns" "hey look at this crazy guy" moment at a local ID clinic. They invited most of the small office staff in for my earnest plea for an IGenEx test requisition... (about 8 or 9 people standing there while I give a "clinic" lol) At least I got one of the doctor/assistants/trainees to go print out my IGenex test requisition and voila, sent the blood, got it back, hey there's the Lyme specific band, hey look at that. And I brought a print out of "Lyme Bingo" from Horowitz to one of the few younger female doctors there that actually graciously said "teach me". And I explained the whole bit about the need for multi-pronged abx, breaking up biofilms, how Doxy (without other combo abx/herbals) may be ineffective, how this smart-bacteria hides in white anaerobic tissue... I mentioned that I would like some Flagyl/Metronidazole plus Minocycline and she cautiously gave me a nerf-ed prescription for Metronidazole (3-4 days worth) and a "Z-Pack" (Azithromycin) like 10-count. I was so disappointed by this that I didn't even take what she gave me, because I'm like why do it at all? unless you are going to make a proper go of it?

I don't blame them for being scared to understand and treat this awful disease, as some wrong-headed, unimaginative, backwards-thinking people bullied them to make it this way...doctors that have empathy and understanding, who are willing to learn something new like my dear lady ID MD mentioned above...lose their flipping jobs for treating knowledgeable well-read and informed patients like me.

Aaaaaaaand THAT. IS. WRONG.

She should get a raise, paid airfare and lodging to ILADS conferences, and insurance-paid consultations with Lyme-literate educators/courses, and reasonable immunity from legal recourse should she and her patient (me) decide to treat with aggressive abx. There is plenty of literature to guide us/them in the right direction; they just don't have the time, they are overworked, 15 minutes per patient and the broken American health care system

/end crying out loud.

Post Edited (borrelioburgdorferii) : 10/21/2018 1:20:24 PM (GMT-6)

10LymeB said...
My husband is very traditional when it comes to doctors. It's taken him a long time to get on board with alternative medicine. He half thinks naturopaths and LLMDs are witch doctors. He is learning, though. I cannot imagine Mayo is on the cutting edge of Lyme treatment, but my husband needs to hear that it's not worth it. Thanks everyone and to those that had bad experiences, I'm so sorry to hear it. It really is disappointing that we're basically on our own with this.

Girlie, I'm in the "wait and see" period. I'm at 8 months post stem cells and have been told that if I don't see results after 15 months to contact them. That's disappointing. I wanna hear everyone gets better, but it's starting to look like some people are just more difficult to treat. Lyme is tricky, that's for sure. I am seeing VERY minor improvements, but not enough to write home about.

So in 15 months if you’re not better - will you get another treatment? (Infusion )

I didn't read the others' responses.

I went to Mayo in Jacksonville in 2011, two years after my symptoms started. I saw an allergist, dermatologist, and a rheumotologist.

I had lots of bloodwork including all the autoimmune stuff, a 24 hour urine test, and autonomic nerve testing. Then they dropped the ball.

All test results were normal. No one mentioned Lyme or any other infectious disease.

Don't waste your time. If you want labs that show something, go see a Functional MD.

My regular Dr doesn’t know much about lyme - partly why it took me so long to be diagnosed... but she tried ... lots of tests/specialists .. etc.
But I forgive her ignorance because she DID try to find out what is wrong with me.

And she has been supportive with my diagnosis - and has never belittled me - does all the lab work that my U.S. LLMD wants done.

I keep waiting for her to say something about how long I’ve been treating - but she doesn’t - she does see the improvements I’ve made so I guess that’s showing her that my treatment is working.

You don’t need to be lyme literate to have common sense and compassion.

I would rather receive medica l care from primates than these WHO savages