Tried to find an email for you but can't bring it up.
Would like to share info.
Bug
Posted by Tincup (Member # 5829) on :
I won't laugh. Cause today I had to look up my own phone number.
OK.. scroll up to my first post.
Look there near the bottom.. after the and before the dancing man.
That is my email address.
Posted by bettyg (Member # 6147) on :
is this EXCLUDED TO ONLY MINN. folks or OTHER states who have gone to mayo, minn ???
Posted by barksplinter (Member # 13249) on :
This might get pulled but.... I know OF aN ER doctor who went to a Mayo with a tearing chest pain.. he Knew he had a Dissecting Aortic Anuerysm. Unfortunately he had been to a party and smelled of alcohol. The short of it is that they subdued him physically and with RXs when he got Irate they were only following the Cardiac track and would not do a CT scan.
He ended up paralyzed in ICU on a ventilator. A few days later they were weaning him and he mouthed to his family around the tube... "they're killing me". He finally was able sign out Against Medical Advice and fly to another state, on a regular Airline without monitoring, to a friend who REPAIRED HIS DISSECTING AORTIC ANEURYSM!
Posted by wantabe (Member # 14703) on :
Tested at Mayo for many things- they wanted to do more tests...Neurology-Thought I may have chronic meningitis -no help, Infectious D.-no help, Rhumy-actually was nice & OK w/ LLMD trestment.
I had to ask them to do a Lyme test after they said my LLMD tests were really negative and that "they" would not treat because of "those" tests. Their test came back negative-suprise!
They did find Erhlichiosis 1:256 <1:64 that hadn't been found by LLMD- wanted me to come back for a 10 day treatment w/doxy
Upset when I told them I already started treatment w/my LLMD- longterm
Wantabe...me again
Posted by Julie4848 (Member # 13065) on :
Question, what is the differnce between They did find Erhlichiosis 1:256 <1:64
The 1:256 and <1:64
Is the <1:64 negative and the 1:256 positive??
Thanks Julie
Posted by aklnwlf (Member # 5960) on :
Unfortunately I'm one of the many on this board that went to the Mayo too.
I went to the Mayo in Jacksonville Florida so does that count?
I went twice.
Diagnosis.......Fat.
I had diplopia which they did nothing about and had mostly recovered from 6th nerve palsy at the time.
You know the Mayo, they send you to many different ducks while there but did absolutely nothing for me.
Just ran many tests and I spent big bucks that took me a couple years to pay off.
Like you always say TC, 'hold the Mayo'!
Posted by mjo (Member # 7876) on :
I was nearly 100% certain I had Lyme but had one negative Western Blot (while on doxy). When the local doc I was seeing couldn't possibly imagine that I had Lyme in our hyper-endemic area, he referred me to Rochester Mayo.
The admitting doctor at Mayo wouldn't let me be seen in Infectious Disease; he said, "You have to have a positive test to get to that department." When I explained that the test was probably negative because of the abx, he gave me a song and dance about WB tests, thinking I wouldn't know what he was talking about, but I did. And he was totally off the charts wrong in all that he said. (I should have left right then, but look where I was. If world-renowned Mayo couldn't help me, who could!?)
The scumbag admitting doctor said I could be seen by their ENT department for my hearing loss.
All was fine during the ENT consultation until I mentioned the L-word. If they had an ejection button for the ENT chair I was in, the ENT would have pressed it right then.
As soon as I got the L-word out, the ENT said he had to talk with one of his colleagues. Here's my imaginary take on their conference:
"What?! She thinks she has Lyme disease?!!! Well, you know as well as I do that she probably does and that's the root of this hearing loss! Get rid of her as fast as you can. You know we don't treat Lyme disease here! And don't come back until she's gone if you want to keep your job!"
Three months later I had CDC-positive (IgG and IgM Western Blots from IGeneX so I guess you could say I was misdiagnosed/undiagnosed at Mayo.
Posted by schnuddelka (Member # 8031) on :
I had bells palsy and my neurologist sent me to Mayo to figure out what was wrong. They were thinking MS or Fibromyalgia, but didn't understand my "other" symptoms.
After many tests etc.,(CD 57 of 4) they said that my negative lyme tests were accurate, and they, too were at a loss as to what was wrong with me.
go figure... Posted by mjo (Member # 7876) on :
Oh yeah, schnuddy. You made me think of someone else, a man that went to Mayo with a classic ACA rash, history of tick bites (in our hyper-endemic area), and symptoms. The doctors at Mayo wouldn't even look at the ACA pictures in Karen Forschner's book when the man and his wife tried to show them the pictures.
The Mayo's diagnosis: Shingles. Though they were willing to admit that shingles on the hand and lower arm was an unusual presentation.
Then the man went to a dermatologist at Mayo who said, "That's not shingles, and even if it was, they have you on the wrong meds for that." They can't even agree among themselves!
Can't remember what they called the rash after that. But the last diagnosis, when the man could barely lift his arm, was Reflex Sympathetic Dystrophy.
Minnesota had a young woman on TV who was suffering mightily from "RSD," too, and I know someone else who has the same thing, no help for the "condition" even after surgery. I wonder why?!
Posted by wantabe (Member # 14703) on :
Icon 1 posted February 19, 2008 11:45 AM Profile for Julie4848 Reply With Quote Question, what is the differnce between They did find Erhlichiosis 1:256 <1:64
The 1:256 and <1:64
Is the <1:64 negative and the 1:256 positive??
Thanks Julie
Julie, If Mayo explained it right... it is a positive Erhlichiosis test if it is greater then 1:64 Mine was 1:256 making it positive even to their surprise. My LLMD lab didn't show any trace. They were done 3 weeks apart- Mayo last
They wanted me to come there to be treated because, "We diagnosed you- we need to see you again."
Posted by adamm (Member # 11910) on :
It's my understanding that, with one exception, all
of the Lyme patients who've gone to Mayo have been
misdiagnosed.
There is no way this is simply the result of ignorance--
the big institutions are undoubtedly receiving lots of money
to leave us to die like dogs.
Posted by AmyPW8 (Member # 11504) on :
Posted by laura miller (Member # 12703) on :
I am just another of the many, who went to Mayo this last year.
I became horribly ill all at once, we of course went there because we thought it would be "the best".
We had every test possibly known.. done, and came up with nothing!
Every square inch of me in and out.. was poked and proded, every test just kept coming up negative...
We spent $1000's ....even was sent to a psychiatrist who said I should be put on an anti-depressant !
I ask several times "could this be Lyme" and was told "oh no-we checked for that!"
The final conclusion was "We may never know what type of virus Mrs. Miller might be experiencing?"
Needless to say I am frustated and angry by the whole "Mayo experience"! Posted by Lymetoo (Member # 743) on :
They're really big into "viruses", aren't they!!?
Posted by mjo (Member # 7876) on :
adamm. You are right. It is far from ignorance.
Did I write that a dozen people who were sick sat in my living room one Saturday morning--half had been to Mayo, not one was diagnosed there. All were sick with Lyme. Not one would go back. The feeling was that Mayo likes to run up enormous bills and that they're fine sending patients home with "no diagnosis."
Here's one to make your hair stand on end:
One gal's husband had nearly died at Mayo. When he was in the death throes, she asked Mayo doctors to test for Lyme + and to please start him on abx. They acquiesced. Lo and behold hubby got better and did not die.
She was in her husband's room a few days later when she heard the doctors approaching on rounds. When they got near the door, she heard the lead doc announce to the others, "This is the guy that has Lyme and Babesiosis," though her husband was sent home with, "No diagnosis, possibly fevers of unknown origin."
At first I was livid when I learned of this, but then, after a while, I realized that sending him home with this type of "no diagnosis" meant that the man could continue to receive treatment (Mepron/Zith) in our Lyme-hostile state.
It boils down to this: The doctors did the best they could for him (meaning he didn't die) and they essentially prescribed or proscribed ongoing treatment for him through the family's hometown doc who could continue to implement without fear of higher ups or medical authorities.
So don't think for one second that Mayo doesn't know what they're doing. This story proves unequivocally that they are well aware of the controversy and choose to let us "die like dogs."
Posted by imanurse (Member # 7022) on :
Many Iowans have been MISdiagnosed at Rochester MN Mayo. We have started a 'list'.
I am one of them. I was there twice. I was very very ill, seizures every day, encephalitis, etc. They put me in the epilepsy monitoring unit at the hospital for days costing many thousands of dollars. Wasted valuable time and much money there.
I have since had my chart corrected and my ++++ positive Western Blot and correct Lyme diagnosis is now part of my permanent medical record there. I wrote a very nice article in the paper saying I was misdiagnosed there and sent it to them along with copies of my ++ labs and a very nasty letter. I sent it to the right people and it got attention!! (I have a relative who works there and told me the grievance procedure and who to write.)
p.s Oh, and those "pseudo seizures" that aren't real that they diagnosed me with....
Had another one last night. Husband found me in the bathroom vomiting and unconscious after I had a seizure and fell to ground.
I will never forget this statement from the epileptologist at Mayo Rochester...
"We cannot find a cause of seizures for about 30% of those that come here to the epilepsy unit. They don't come back, so we do not think they are real. They don't have epilepsy. Sometimes people do this as a cry for help, a cry for attention. Sometimes women do this when they are in a domestic abuse situation at home. You can talk to the Psychologist about this. We are referring you to a Psychologist for evaluation. You do not have epilepsy. It is likely that your psuedo seizures will even stop after this discussion just because of the power of suggestion and us confronting that they are not real."
Posted by Tincup (Member # 5829) on :
up...
Posted by Nicoles Mom (Member # 14408) on :
I took Nicole to Mayo's headache clinic. She was diagnosed with food allergies and auto-immune switching disorder (or something like that).
Posted by bettyg (Member # 6147) on :
tincup and others,
just had an idea so i copied this link and sent it to ALL ON MY LYME LIST GROUP asking them to reply here or send tincup an email..... Posted by Tincup (Member # 5829) on :
Thanks BG and others for responding.
Appreciate the help.
And don't forget.. do a tick check and HOLD THE MAYO!
Posted by aiden424 (Member # 7633) on :
Really!!! They told me over 20 years a go that I either had an unknown virus, or a virus had damaged my immune system. You'd think they could come with something better or different after all this time!!
Kathy
[QUOTE]Originally posted by Lymetoo: [QB] They're really big into "viruses", aren't they!!?
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