LymeNet Flash: Please hold the Mayo ...

This is topic Please hold the Mayo ... in forum General Support at LymeNet Flash.

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Posted by Somalimom (Member # 4509) on :

Hi everyone,

OK ... I know I'm probably opening a huge can of worms by asking this question, but I can't resist ...

I have a relative who is a staunch believer in the mainstream medical establishment and sees the Mayo Clinic as "the best of the best." Several times, this relative has suggested to my husband and I that we should go to Mayo to have my case evaluated. We've explained that it's really out of the question money-wise, but he occasionally sends e-mails iwth info from the Mayo website about Lyme and asks if I've had this test or that treatment.

Before I was diagnosed with Lyme, I was told I had CFS (surprise, surprise), and after reading parts of "Osler's Web" and selected other articles, I was left with the impression that Mayo is the LAST place a person like me would want to go. From what I've read, the most likely scenario is that I'd be run through a battery of intrusive tests, and once all my money was gone, they'd tell me it's all in my head.

To those of you who know more about Mayo or have actually been there ... is this an accurate conclusion? And what kind of answer should I give to people who suggest Mayo?

BTW ... I tested positive for Lyme by Western Blot and urine PCR and took oral doxy for one month before saying bye-bye to abx and pursuing alternative treatment. One year into this, I'm much improved and still going forward at a gradual but steady pace. It has been quite an education.

I'll be interested in reading everyone's comments.

Smiles and best healing wishes,
Somalimom

Posted by Tincup (Member # 5829) on :

Run run as fast as you can..

Away from Mayo and their big brass band.

You'll waste your time and your money too..

Believe me dear, it is all true.

------------------
If you get the choice to sit it out or dance...

Posted by Paisley (Member # 6502) on :

yes, I agree wtih TinCup... run forest run.

I was at Mayo for meningitis (due to undiagnosed lyme - even though I had lyme in 80s). What a nightmare. Then, when the pain wouldn't go away they began to tire of me, because they could not figure out what was wrong with me.

It was some of the worst care I have ever received. And, yes, eventually they did insinuate that I was a nut job.

Glad to hear that you are feeling well. I do not want to sound like a no it all, but I would like to share that I had only received 1 month of abx. 20 yrs. ago and am now falling apart. From everything I have read - it is just not enough to get what my llmd calls the smartest bacteria ever seen. I am also involved with a naturopathic dr. and believe that it is an absolute component to abx. treatment.

regards
paisley

Posted by treepatrol (Member # 4117) on :

Swim away swim away!!!!

Posted by SteveInMinnesota (Member # 6661) on :

I actually work for Mayo and drive an hour away from here to see an LLMD.

I was hospitalized here with meningitis about 19 months ago. My wife asked them to test me for lyme and they said that it was "the wrong time of year for Lyme Disease". I got over the Meningitis but never seemed to recover fully. Recently I was diagnosed with Lyme Disease and tested "very" positive.

By the way, in the interceeding 18 months, I was treated in the neurology department at Mayo and they never once mentioned the possiblility of Lyme. I went through a number of drugs (like amiltryptilyn) that only attempt to mask the symptoms.

I would looks somewhere else than here.

Sorry about the spelling, I have a few good days each month and this isn't one of them.

Posted by JJ (Member # 602) on :

I too have been railroaded by the Mayo. I pulled these links from the 'Seeking a doc". Hope they work!

If not, do a search on "Mayo". Lots of victims out there!
http://flash.lymenet.org/ubb/Forum2/HTML/001737.html http://flash.lymenet.org/ubb/Forum2/HTML/001266.html

Posted by Somalimom (Member # 4509) on :

Just as I thought.

Thanks, everyone, for confirming my supsicions.

There's probably no way I can convey all this to a person who thinks of Mayo as the ultimate in medicine ... but it's good to know that my instinct to flee is correct!

*laughing manaically at the great Nemo pic!*

quote:
I do not want to sound like a no it all, but I would like to share that I had only received 1 month of abx. 20 yrs. ago and am now falling apart. From everything I have read - it is just not enough to get what my llmd calls the smartest bacteria ever seen. I am also involved with a naturopathic dr. and believe that it is an absolute component to abx. treatment.

I totally agree that one month of abx isn't enough! Any time I hear someone say that this is a "cure," I get really frustrated. Bb is clearly a tough bug.

The reason I only had 1 month of abx is because I just didn't feel comfortable with that approach. I was very worried about candida, etc., so I asked the LLMD I was seeing if there were any alternative treatments we could try. He said yes, and referred me to another doc with more experience in the alternative realm.

Under my alternative doc's care, I've been taking Samento (along with a lot of supportive supplements) for a year now, and I'm much improved. Fatigue has always been my main complaint; before starting the Samento, I had trouble making it up the stairs in our house and had to spend a week or so recovering after short shopping trips. Now I'm able to enjoy going out of the house without suffering afterward, and can do light chores at home as long as I'm careful not to overexert myself.

There's still a lot of room for improvement, but I've been sick since 1998 and might have contracted Lyme as a preschooler (I'm 27), so I know it will take time for my body to correct all the problems that have been allowed to go on for years.

I know Samento is fairly new, but I'm hoping time will show it to be an effective treatment option, especially for those who are abx-shy or who have failed to stay well after long courses of abx.

Smiles and best healing wishes to all!
Somalimom

Posted by can not remeber (Member # 6520) on :

After my second trip in Jx Fl at St Lukes Hospital the follow up with the neurolist with the faxed results from Igenex in his hands still reported "possible lyme" he told me it had nothing to do with the "seizures" and it "may effect my immune system" this "possible Lyme". My neurolist in Fl worships the Mayo put me back on their precribed meds and took me off the LLMD meds for the pschgenic lyme seizures (Keppra). The LLMD wanted to treat me aggessivly IV for the Lyme, Babesia, and Erch. BUt refused until they get the epilesy under control. Now I will comtinie to have to pschogenic/lyme seizures and the neurologist who thinks that the Mayo is gods gift to the medical community will put me on more meds than the 15 all already take, he will not understnd the differnce - and now I can not take antibiotics. Now I know why my LLMD suggeted I move to N.C.
I wish I had never gone to the Mayo. I went there with a biopsy of bullseye rash - they refused to take it. I believ this is such a rampant infectios disease because it does not kill people like small pox, aids etc does not draw the attention of the public, govt etc. The business companys refuse to understand the repurcusions of the cost of the workforce unable to work costing billions of dollars It is always about money. That speaks volumes not the personal aspects, unfortunately. They need to be hit hard. They understand the bottomline which is money. That is the only language they speak. How many people are out sick in a major corp are due to lyme? That is a sticky wicky. Legislation will get us ADA think do we really want it? Will Aids/Hiv come forward to be tested when they are out sick? If you are out sick and get tested for Lyme and are positive then we can become ADA. No longer a sticky wicky. What do you think you now Mayo?

Posted by DiffyQue (Member # 3317) on :

They should change the nature of the business and sell 'Hellmann's'....

This place has left a bad taste in the mouths of too many.