posted
Has anyone been to Mayo Clinic for treatment? If so, were there any LLMD's there?
Posts: 4 | From West Des Moines, IA | Registered: Apr 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
"Mayo" is usually said with a tinge of horror on this board!!! Beware*)!!!
And welcome*)!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Post for a Dr in Doctor section
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Regrettably, "LLMD" and "Mayo" are rarely used in the same sentence.
A possible exception would be "My LLMD likes his sandwiches with mayo."
If you do a search using the word "mayo" in the subject line, you're apt to be very frightened!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Foggy
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Member # 1584
posted
Hold da' Mayo. Posts: 2451 | From Lyme Central | Registered: Aug 2001
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sometimesdilly
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posted
"A possible exception would be "My LLMD likes his sandwiches with mayo." Posts: 2507 | From lost in the maze | Registered: Aug 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
)!*!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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quote:Originally posted by Michelle M: A possible exception would be "My LLMD likes his sandwiches with mayo."
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I went to Mayo in MN twice and tried to convince them I had Lyme. They said I did not have lyme. Their test showed band 41 and they said nothing about it possibly being Lyme except when I got the report later at home it was in fine print that it could be Lyme.
Nix Mayo for Lyme. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You don't want to get me started!
BIG bafoons!!!
I wouldn't send my worst enemy there for Lyme!
RUN, RUN ... as fast as you CAN!!!
Duck City!!
NO NO NO... please don't go!
I'd rather be tied by my ankle and hung dangling off a bridge than go there!
I'd rather eat a tub full of worms and rotted fish guts than go there!
I'd rather lick all the barnacles off the bottom of all the boats in the whole world than go there!
By the way...
Did I make myself clear?
Welcome to Lyme Net... where we don't hesitate sharing an opinion!
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
I agree with what everyone else has said....
You will probably get a nice diagnosis of "Fibromyalgia", and they will send you to class explaining that there is no cause and no cure for your problems, with some nice suggestions thown in as to how you can still spend lots of money with the medical profession.
(This was at Mayo - Scottsdale, AZ)
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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lymeladyinNY
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Member # 10235
posted
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
That Mayo in Scottsdale is about two miles from my LLMD and he gets their rejects all the time.
Some came to him with death sentences...not kidding.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I'm so glad I listened to the wonderful people on Lymenet and did NOT take my son to Mayo (we did have a scheduled appointment last year but cancelled!).
The overwhelming consensus was "HOLD THE MAYO!!!!!!!!!" My son is being treated by the best LLMD and is slowly getting better.
Let me share this with you: our aunt's neighbor's granddaughter experienced all-over body pain and hurt to be touched, starting when she was seven years old.
People would comment that she was "faking it" and was "lazy and didn't want to do any chores", etc. They didn't believe her. My teenage son also experienced this.
For some reason (I think she had an infection or something), one doc put her on IV antibiotics, pulsing two weeks on, one week off for a while (not sure for how long). She got better but still had pain.
When she went back to high school, she was pushed into a desk by some kids who were goofing around. She was in so much pain that they had to airlift her to the local hospital.
The ducks did what they could but she ended up going to Mayo for an emergency appointment.The ducks there diagnosed her with "Acute Fibromyalgia" and "Candidiasis".
They told her to watch her diet and drink strong Sumatran coffee from Starbucks. There really was nothing else they could do for her.
Having heard her story, I suggested to our aunt that this girl and her parents check this website, read the posts and find a LLMD.
Guess what? She has since been diagnosed with LYME DISEASE, is now being treated by a LLMD in her state and is doing much, much better!!!!!!!!
So don't waste your money, time and energy going to Mayo. A LLMD is who you need. God bless and I wish you well.
Posts: 8981 | From Illinois | Registered: May 2006
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Talk about facing a challenge! Nothing quacks louder than Mayo.
Maybe we can start calling them Minnesota's southern 3M. They can be the Mayo Money Mongers or the Mayo Misdiagnosis Monopoly. Or we could just say, "The world-renowned duck towers (WRDT)."
Posts: 422 | From Luck home | Registered: Sep 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I was seen at Mayo Clinic too (AZ), and was not diagnosed. (They didn't know what was wrong with me).
When I was diagnosed at Columbia Univ Medical Center, I contacted the doctors that saw me at Mayo, and explained my diagnosis.
I sent them the last set of DVDs from the ILADS conference. The internal medicine doctor did watch them and thanked me for them.
Hopefully, it made a difference. I do believe doctors can learn.
Timaca ps...now I get to send them a letter explaining my chronic viral illness diagnosis! Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Good for you, timaca!
I hope these doctors can learn too.
Take care.
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
i had a bad experience at the mayo clinic in rochester minn. in 2005 (one year pre lyme diagnosis). the doctor i saw was rude and arrogant and didn't listen to me and it was a total waste of time and money.
~catwoman
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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posted
Been to the Roch Mayo Clinic. HOLD the MAYO!!! There is a great LLMD in Southern MN, private mail me if you want contact info. Was treated and cured by them, while Mayo said I did not have Lyme even though my ELISA was positive even by CDC standards.
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Invest your time and money in seeing an LLMD, forget Mayo. PM me if you need help finding an LLMd.
I was going to (way back) go to Mayo, but then read many stories of their Lyme illiteracy, so I saved myself the trip,money & time and saw a good LLMD instead.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I am more than happy to share the LLMD's name at Mayo. Please private message me. It's easier for me to respond to you then the other way around.
I was corresponding with Barbara Buchman, executive director of ILADS about Mayo Clinic, for I've been in correspondence with some of the doctors at Mayo Clinic AZ concerning my different diagnoses (lyme being one).
Barbara is the person who gave me the name of the LLMD at Mayo in MN. So, I can assume she knows an LLMD when she sees one!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I did a search at Mayo Clinic, MN for this doctor and couldn't find him. Barbara did say he was at Mayo Clinic in MN and was an ILADS member. She also said he was in Duluth, MN. (I don't know how far apart Duluth and Rochester are as I don't live in MN...sorry!)
SO, I did a search for this doctor in Duluth and found him at St Mary's Duluth Clinic in Duluth. He is an Infectious Disease doctor.
My correspondence with Barbara was late August. SO...whether he is at Mayo and they haven't yet updated their website, or if he is in Duluth.....or both places....not sure.
But, if someone needs an ILADS doctor that is an ID specialist in MN, I guess I have the name of one!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
T said.. "I am more than happy to share the LLMD's name at Mayo. Please private message me. It's easier for me to respond to you then the other way around."
Tutu... Since I don't PM... and it is too hard for T to send me an email... can you email me the name please?
TANKS!
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T said.. "So, I can assume she knows an LLMD when she sees one!"
Normally I would say she can.. BUT.. some of the "lists" folks have are only names of people who may have attended conferences.. and/or names of people who have used our labs.. so it doesn't mean they are LLMD's. And I am SURE she isn't trying to mislead you or anyone else. BUT...
I've met some pretty stinky doctors at the ILADS conferences who definetely were NOT LLMD's and were only there because they had to be or were curious as a one time thing... or they were there with others.
Now there COULD be a LLMD at Mayo... and I am not doubting Barbara at all because I don't know.
I am just saying beware.. because this isn't "normal" and if it simply came from a list.. it may not be someone we consider to be a LLMD.
OK?
I'm just trying to save you or others from danger. It might be safer to jump in a shark tank than go to Mayo for Lyme.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
If this is your fellow.. please check the first co-author listed beside his name.. Bumsteere.
Also note the main word used in each and every one of his papers..
"Cost-effective"
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Eckman MH, Steere AC, Kalish RA, Pauker SG. Cost effectiveness of oral as compared with intravenous antibiotic therapy for patients with early Lyme disease or Lyme arthritis. New England Journal of Medicine. 1997;337(5):357-63.
Eckman MH, Singh SK, Erban JK, Kao G. Testing for Factor V Leiden in patients with pulmonary or venous thromboembolism: a cost-effectiveness analysis. Medical Decision Making 2002;22(2):108-24.
Eckman MH, Levine HJ, Salem DN, Pauker SG. Making decisions about antithrombotic therapy in heart disease: decision analytic and cost-effectiveness issues. Chest. 1998;114(5 Suppl):699S-714S.
Eckman MH, Falk RH, Pauker SG. Cost-effectiveness of therapies for patients with nonvalvular atrial fibrillation. Archives of Internal Medicine. 1998;158(15):1669-77.
Eckman MH, Levine HJ, Salem DN, Pauker SG. Making decisions about antithrombotic therapy in heart disease: Decision analytic and cost effectiveness issues. Chest 1998;114(5 Suppl):699S-714S.
Johnston JA, Brill-Edwards P, Ginsberg JS, Pauker SG, Eckman MH. Cost-effectiveness of prophylactic low molecular weight heparin in pregnant women with a prior history of venous thromboembolism. American Journal of Medicine 2005;118(5):503-14.
Mrus JM, Yi MS, Eckman MH, Tsevat J.
The impact of expected HIV transmission rates on the effectiveness and cost of ruling out HIV infection in infants. Med Decis Making. 2002 Sep-Oct;22(5 Suppl):S38-44. PMID: 12369230 [PubMed - indexed for MEDLINE]
Eckman MH, Greenfield S, Mackey WC, Wong JB, Kaplan S, Sullivan L, Dukes K, Pauker SG. Related Articles, Links Foot infections in diabetic patients. Decision and cost-effectiveness analyses. JAMA. 1995 Mar 1;273(9):712-20. PMID: 7853629 [PubMed - indexed for MEDLINE]
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Oh my GOSH TC!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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bettyg
Unregistered
posted
tc, on the mds names you showed, timaca's dr. is NOT LISTED in the list you gave.
he is in duluth; not mayo clinic; so i do not understand the mayo clinic connection!
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posted
Story told me by an ER doctor... I consider credible. His HIGHLY experienced ER doctor friend went to a MAYO with a tearing knife like chest pain radiating to his back. He'd came from a party and had had a few beers. When he became irritated that the MAYO ER doc would not do a CT scan but was only doing a Cardiac workup, the confrontation convinced the MAYO ER doctor he was in withdrawal and he got ativan and eventually INTUBATED! After a few days they decreased his sedation and he mouthed to his family around the ET tube, "Get me the %$#@ out of here". When he was extubated he left against medical advice, boarded a 4 hour flight to see his medical school classmate/cardio-vascular surgeon for immediate repair of his dissecting Aoritc Aneurysm.... beating death only by the grace of God.
Posts: 70 | From AZ | Registered: Sep 2007
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quote:Originally posted by Tincup: If this is your fellow.. please check the first co-author listed beside his name.. Bumsteere.
Also note the main word used in each and every one of his papers..
"Cost-effective"
`````````````````````````````````````````````````
Eckman MH, Steere AC, Kalish RA, Pauker SG. Cost effectiveness of oral as compared with intravenous antibiotic therapy for patients with early Lyme disease or Lyme arthritis. New England Journal of Medicine. 1997;337(5):357-63.
Eckman MH, Singh SK, Erban JK, Kao G. Testing for Factor V Leiden in patients with pulmonary or venous thromboembolism: a cost-effectiveness analysis. Medical Decision Making 2002;22(2):108-24.
Eckman MH, Levine HJ, Salem DN, Pauker SG. Making decisions about antithrombotic therapy in heart disease: decision analytic and cost-effectiveness issues. Chest. 1998;114(5 Suppl):699S-714S.
Eckman MH, Falk RH, Pauker SG. Cost-effectiveness of therapies for patients with nonvalvular atrial fibrillation. Archives of Internal Medicine. 1998;158(15):1669-77.
Eckman MH, Levine HJ, Salem DN, Pauker SG. Making decisions about antithrombotic therapy in heart disease: Decision analytic and cost effectiveness issues. Chest 1998;114(5 Suppl):699S-714S.
Johnston JA, Brill-Edwards P, Ginsberg JS, Pauker SG, Eckman MH. Cost-effectiveness of prophylactic low molecular weight heparin in pregnant women with a prior history of venous thromboembolism. American Journal of Medicine 2005;118(5):503-14.
Mrus JM, Yi MS, Eckman MH, Tsevat J.
The impact of expected HIV transmission rates on the effectiveness and cost of ruling out HIV infection in infants. Med Decis Making. 2002 Sep-Oct;22(5 Suppl):S38-44. PMID: 12369230 [PubMed - indexed for MEDLINE]
Eckman MH, Greenfield S, Mackey WC, Wong JB, Kaplan S, Sullivan L, Dukes K, Pauker SG. Related Articles, Links Foot infections in diabetic patients. Decision and cost-effectiveness analyses. JAMA. 1995 Mar 1;273(9):712-20. PMID: 7853629 [PubMed - indexed for MEDLINE]
When I see "Cost-effective", I 1) wince, 2) think man he sure must be in soo tight with his insurance company cronies. Unbiased my *** .
Posts: 131 | From PA | Registered: Aug 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
The following was sent in a PM to bettyg as she wrote to me. She has the names which are excluded here.
The e-mail conversation I was having with Barbara from ILADS was about the Internal mecicine doctor at Mayo clinic AZ that I was corresponding with (Dr. B). At the end of the conversation Barbara mentioned that there was a colleague of Dr. B's that was an LLMD). I asked if that doctor was at Mayo Clinic AZ...and the name of the doctor.
The reply I got was Dr. S in Duluth, MN.
At the time I didn't think anything of it, for I don't live anywhere near MN, and I had no reason to check this doctor out further.
If he is associated with Mayo Clinic as Barbara said, I don't know. He's not on their website. He is on the website for St. Mary's Clinic in Duluth.
I'd suggesting calling that clinic and see if he works there....or calling Mayo to see if he's there if someone wants to see him.
Barbara gave me the impression that he is an ILADS member and not just someone who had attended a meeting.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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quote:Originally posted by barksplinter: When he was extubated he left against medical advice, boarded a 4 hour flight to see his medical school classmate/cardio-vascular surgeon for immediate repair of his dissecting Aoritc Aneurysm.... beating death only by the grace of God.
WOW! He's indeed lucky to be alive!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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