just would like some feed back about the Mayo Clinic with Lyme and Co.
I think I read somewhere on here that it's a
any thoughts would be sooooooo appreciated.... this is for my sister-in-law who is traveling from Georgia to the mayo next week.....
thanks!!
mtree
Posted by seekhelp (Member # 15067) on :
I hear useless.
Posted by dmc (Member # 5102) on :
I too heard they are despicable when it pertains to tick diseases.
Posted by lymeparfait (Member # 14268) on :
Some people need to follow the road theyare comfortable walking.
The Mayo clinic will not address all she needs, but she may feel like they are the experts!
This is always the problem when we try to help people.
Present alternative LLMD's to her and see if she want to try them first.
Get her a copy of "under our skin" which explains it the best.
Otherwise, she will have to walk down a path, not get better, then finally ask for help and be open to a LLMD.
Posted by sutherngrl (Member # 16270) on :
Their knowledge of Chronic Lyme Disease is zilch!
Posted by Lymetoo (Member # 743) on :
$$$$$$$$ spent for NOTHING!!!!!!!
Posted by mtree (Member # 14305) on :
thanks so much!!!!!!!!!!!!
I did send her and the family the UOS DVD....(just to show what we are going through) they all know what I have been through.....the DVD did help with that......
they did give the DVD to her "pain specialist"..which I was surprised at..he never gave the DVD back to her..."lost" it....????
I have never and will not push any Lyme on her ....nor does my Dh (his sister)
thought the DVD would have sparked something....we sent it to all of my husbands family...8 kids (oldest is 64ish...youngest 46) all over the country with their own grown children as well.....
problem is...is that my husbands family has very very high expectations for the Mayo.....
lots of family in Minnesota...many have worked there (years ago)....
its the place that has all of the anwers and she's so elated she is able to get in there......
ug!!!
I just wanted to get some info...just incase I'm asked anything........
she just bought a motor scooter......I hate to see the deterioration but I agree....some just have to go through it...
its amazing to me that someone would rather be in a motor scooter then to try and be treated for Lyme and Co........
For those with chronic illness in which the liver is not properly working, the only think Mayo clinic may be good for is in diagnosing porphryia.
But, for anyone with a possible tick-borne infection, it will cost them big bucks, humiliation, exhaustion - unless they fall under one of the programs bringing in big bucks in grant money.
If they don't - then no doctor in the future will ever believe them because Mayo will say they are fine (and most doctors think Mayo is God and if Mayo says all is well, then the patient is faking or deranged.
I hope she cancels her trip and finds an ILADS LLMD to rule out tick-borne infections. If they are ruled out, the LLMD may then be able to guide her elsewhere but with the description you give it is essential to see a top LLMD first.
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[ 06-30-2009, 04:52 PM: Message edited by: Keebler ]
Posted by mtree (Member # 14305) on :
hshbmom.... ... I got another laugh...
this time was able to read your post much better....
it's a great challenge for my lyme cognitive stuff...like figuring out a puzzle...
thank you sooooooooo much for the link.... so incredibly helpful!!!!!!!!!
mtree
Posted by WildCondor (Member # 434) on :
In 15 years, i have yet to hear a single good result come out of there for Lyme disease. All I've heard are horror stories, misdiagnosis, lack of knowledge about Lyme, and under treatment. Go to a LLMD instead.
Posted by bettyg (Member # 6147) on :
yes, i've heard horror stories directly from patients who went there and 1 who spent 1 month there and over $100,000 OUT OF POCKET! NO LUCK!
Posted by lou (Member # 81) on :
The only people you can help are the ones who want help. It is a shame when this happens in a family, but it has happened to me too. You have made your pitch and so far she hasn't listened. Until she changes her mind, not much more you can do. Mayo is a waste of money. I have not heard of anyone getting lyme help there, especially chronic.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by WildCondor: [QB] In 15 years, i have yet to hear a single good result come out of there for Lyme disease. All I've heard are horror stories, misdiagnosis, lack of knowledge about Lyme, and under treatment. Go to a LLMD instead.
Ditto for me .. nothing good ever heard for the past 9 yrs I've been here at Lymenet.
Posted by pryorka (Member # 13649) on :
A friend of mine went to them with a positve lyme test, positive erlichia test and positive mycoplasma test.... they charged her insurance over $1500 and gave her a prescription for anti-depressants.
Posted by peacemama (Member # 17666) on :
I live less than 2 hours from there. . and I would NEVER go there for Lyme. Anything else, yes. But they are not Lyme Literate in the least.
If you have to rule out anything else, okay, but they will treat any mention of Lyme with a roll of the eyes (after they prove to you that their Western Blot is the almighty truth).
Posted by Faith6 (Member # 14072) on :
I live an hour away and brought my son there probably 8-10 years ago when he was in his early 20's. He had many funny symptoms and had been to many different doctors. We went back several times for tests etc., but they couldn't figure anything out. Thankfully insurance covered it!
I'm sure he has Lyme and now I think they probably knew, but wouldn't say. They get a ton of people through with the same symptoms so in my opinion they are either stupid or covering something up (and I don't think they are stupid).
Just my opinion.
Posted by aklnwlf (Member # 5960) on :
The best you can do is advise her not to go there and go to a LLMD instead.
I went to the Mayo JAX twice. I didn't have a diagnosis at the time.
It was a huge waste of valuable time that I could have spent in treatment.
Also it took me 2 years to pay for all the expenses of useless tests.
Basically I was told I was too fat and the 6th nerve palsy I had resolved and they had no idea what caused it.
I still have all my records from them and make copies from time to time and use them for target practice.
That's about all I got out of the whole ordeal.
Posted by Tincup (Member # 5829) on :
HOLD THE MAYO!!!!
Pack up the babies and grab the old ladies, and get them all out of there!
Run, don't walk from that place as fast as you can!
Run, Forest, run.
Actually .... after YEARS AND YEARS of hearing NOTHING but horror stories from patients misdiagnosed and treated horribly there...
We did finally get ONE person on LymeNet who said they went there and were told they had Lyme.
It was a blessed miracle!
Of course they didn't get proper treatment, but HOLD THE MAYO did supposedly admit the person had Lyme.
Now.. the BAD thing is...
Once told by Hold the Mayo or Ho Ho Hopkins that a person doesn't have Lyme....
Insurance won't pay... another reason NOT to travel that road... and NO ONE will step up to the plate to try to prove differently.
Except, of course, for some of our wonderful LLMD's.
As for your relative... poor dear...
This may be hard to swallow...
But...
You can lead a horse to water...
But you can't hold their head under it till they agree to do the right thing.
Once she exhausts her options and realizes the quacks have web feet and duck heads...
She will come around.
Unfortunately, this may take years.
Good luck with your efforts.
Posted by karenl (Member # 17753) on :
I was there 6 weeks and paid 60,000 for Mayo. They have not been interested in my unknown disease, did not even try to find a reason. Many labs showed abnormalities, but they ignored. I have never ever heard anybody talking good about Mayo.They write: " she has 17 different problems and is a hypocondriac". In the six weeks in Rochester I went out with many other patients and did not hear one good word. After I was back I got a letter that I am scheduled for surgery to cut a nerve (9,000$) so I would not have bowel pain.
Posted by karenl (Member # 17753) on :
I was there 6 weeks and paid 60,000 for Mayo. They have not been interested in my unknown disease, did not even try to find a reason. Many labs showed abnormalities, but they ignored. I have never ever heard anybody talking good about Mayo.They write: " she has 17 different problems so she is a hypocondriac". In the six weeks in Rochester I went out with many other patients and did not hear one good word. After I was back I got a letter that I am scheduled for surgery to cut a nerve (9,000$) so I would not have bowel pain.
Posted by mtree (Member # 14305) on :
thank you all !!!!!!!!!!
every bit helps....every thought...every post....every experience....
yes...for some reason my Dh's family thinks... ..."if you need answers you'll get them at the Mayo..."
my sister-in-law said to me....(directly)...if they (Mayo) have no answers then I'll have to except that and be at peace with that......
aaaaaaaaaahhhhhhhh....
I'm keeping my mouth shut...for now.....she will have to go down this road because I know that the road to recovery with Lyme and Co. is not an easy one and she would always think she should have gone there....
I have been sharing this thread with my Dh.... I love the Hold the Mayo Tincup!!!....
thank you all.... mtree
dare I ask anyone else????
Posted by pab (Member # 904) on :
I've only heard bad things about Mayo & Lyme disease.
My kids have pseudo-tumor cerebri and Mayo treats this illness the same way as Lyme. My kids neurosurgeon sends the difficult cases to Mayo. Mayo's reply about my kids was the they couldn't do anything more than the neurosurgeon does.
My brother-in-law goes to Mayo for a rare heart problem. Mayo is a really good place for heart problems.
I too live only 2 hours from Mayo in MN. I travel 11 hours each way to my LLMD.
Posted by mtree (Member # 14305) on :
Peggy....
11 hours.....
thanks for your reply!! mtree
Posted by wantabe (Member # 14703) on :
Mayo refused to believe my WB as positive even after my LLMD had highlighted and circled the proof.
They did find ehrlichiosis and wanted to treat for 10 days then BINGO I would be cured.
They didn't want me to take a multivitamin- it could mess up their test results!
I fired Mayo as fast as I could! Spent too much money and time and got zilch!
Just my story...
Posted by mookiewill (Member # 14743) on :
I love this thread! Now I know I'll get better! Posted by mtree (Member # 14305) on :
care to share mookie???
mtree
Posted by TomK (Member # 21069) on :
Did the Mayo - Main MD there found a co-infection & rec'd several months of antbx for it, but then I had to see ID doc there - he only Rx 14 days of antibiotics for it & even had the balz to questions the co-infection diagnosis of main doc - insisted it was Post Infection Syndrome & ordered several other test - we've all heard that before - 2 weeks later all other tests came back negative - could find nothing but the extremely high co-infection.
Amazingly, 3 other docs there said bacterial #s too high too be Post Infection - continue the antbx.... hummmmm, but none were able to override ID doc diagnosis - thats when we started to asks lots of questions & found out that Mayo Clinic diagnos & treats Lyme & co-infection from a 20 year old database. Yep you heard me - - DO NOT GO UNLESS YOU WANT OUT OF DATE TREATMENT PROTOCOLS!! for a disease that is under-researched & hard to diagnosis, you would think it would of been updated at least sooner than 20 years!!!
NO detail Western Blot telling you the bands positive - just a general positive or negative.
If you go anywhere other than LLDM ASK LOTS of questions - How many cases of Lyme and co-infections have you diagnosised? How many have you treated & gotten full recovery on? How long did full recovery take? How long had the patients been sick? New research has been done out east & west, when was the last education you recieved on Lyme & co-infections? From where did the current education come from?
DON'T waste your time or money at MAYO CLINIC - gets very expensive quickly.
Posted by mtree (Member # 14305) on :
thanks Tom for your input and experience....
greatly appreciaited.... mtree
Posted by mtree (Member # 14305) on :
![[tsk]](graemlins/tsk.gif)
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mtree
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mtree
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...sorry to laugh..but i am sooooo glad it's your computer and not YOU!!!....![[Smile]](smile.gif)
mtree
![[shake]](graemlins/shake.gif)
..so not right.... ![[Eek!]](eek.gif)
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![[hi]](graemlins/hi.gif)
mtree![[dizzy]](graemlins/dizzy.gif)
11 hours.....![[Wink]](wink.gif)