Holy moly. A guy named Jack came to our group's meeting. He told the group that he worked with a young guy for a couple days who was really sick with Lyme disease. Local doctors could not (would not?) diagnose him so he wound up at Rochester Mayo and got diagnosed and treated there!!! First one I have ever heard of being diagnosed at Mayo. How could this have happened?
Posted by Tincup (Member # 5829) on :
HOLY COW IS RIGHT!!!!
I think I am feeling the earth move under my feet!!!
WOW!!! UNBELIEVABLE!!!
It only took THIRTY years to get ONE case diagnosed.
Does that guy know he is famous and will go down in history as "THE FIRST"?
But I still say...
HOLD THE MAYO!
Whew.. I gotta go rest! This news was just too overwhelming. Anyone have smelling salts?
Posted by Robin123 (Member # 9197) on :
Falling off chair...
Posted by lymie tony z (Member # 5130) on :
call me Thomas but...
Until I meet this guy named Jack in person and see the lab results and or the diagnosis on Mayo stationery(or whatever)....
PLUS, know that besides the diagnosis, this guy Jack, is actually being treated with antibiotics, in a way that is consistant with
ILADS or Dr B or at least any self respecting llmd. I won't be totaly convinced! I want to know for a fact, that this guy Jack, is actually
being treated as he should be, by a doctor in the Mayo Clinic. Ya know with IV abx or orals at the correct strength and length etc., and so on.
Because there is going to be,perhaps,(not knowing his particular, particulars) a lot of so on's in order to get well.
Then I shall be convinced! Not before.
It's one thing, and a GREAT ONE to be at least diagnosed as having lyme disease by an institution that has NOT been willing to do such
a thing in the past. It's QUITE another to then prescribe the treatment/s he will need on an
ongoing basis for him to become well again....or at least as well as can be.
Please don't get me wrong, some of you folks out there. If TRUE, this would be a MAJOR step in our(all of our)favor.
However, "the proof of the pudding, is in the eating"!
The Lord knows, we're all hungry. Hungry for RESPECT. Hungry for recognition. Hungry for correct, compasionate, treatment.
Then I will be convinced.
zman
Posted by AliG (Member # 9734) on :
Did he have a HUGE bulls-eye rash covering his entire face & body, along with CDC positive Western Blot & Elisa & whatever other tests they could possibly try to find negative?
Posted by Geneal (Member # 10375) on :
Maybe the tick was hugely engorged and still attached
With a bulls-eye rash forming???!!!!
It boggles the mind.
At least (need proof of course) he was diagnosed.
Hugs,
Geneal
Posted by Clarissa (Member # 4715) on :
ALiG: It's official, you are secretly a stand up comedienne! Just admit it, you're really Ellen DeGeneres or Tina Fey or Cheri Oteri.
We've got a celebrity amongst us, folks!
Posted by AliG (Member # 9734) on :
Thanks Clarissa
I often find that if I don't keep laughing, I feel like crying. Laughing is MUCH more fun.
I'm certainly no match for Cobweb. Go read her IV thread in "General", she had me rolling on the floor.
I believe there are many here that are much more masterful at creating hilarity and I am grateful to ALL of them. They help keep me out of "the pit of despair".
Posted by canbravelyme (Member # 9785) on :
Yes, I'm skeptical too!
Did he have CDC Positive, and receive 3 weeks IV abx?
George Bush has been looking pretty well these days; he seems to be more eloquent as well...anybody else notice? Will we ever know what the course (or true course) of treatment was...hmmm
Enquiring minds want to know...
Posted by lymeladyinNY (Member # 10235) on :
I, too, was noticing Pres. Bush looks better.
AliG, you made me laugh, too!
Posted by tailz (Member # 10014) on :
Isn't it obvious he knows somebody there with influence (money)? - like a doctor or a lawyer. Or maybe he's a friend of one of these.
My LLMD told me under some unusual circumstances that doctors and their families with Lyme don't go without antibiotics. Doctors treat themselves and their families.
You don't really think that doctors don't get Lyme, do you?
Posted by adamm (Member # 11910) on :
Bush is still far from...yeah...
Posted by adamm (Member # 11910) on :
Bush is still far from...yeah...
Posted by AliG (Member # 9734) on :
adamm,
I think it would seem you are stuttering. Posted by laura miller (Member # 12703) on :
I am speechless! After $10,000 and I quoting
from my doc at Mayo: "We may never know what kind
of virus Mrs. Miller is experiencing..?"
I am still harboring a little of unresolved
anger..
so I hope the news is true! Ali you made me
laugh!!!! Laura
Posted by aiden424 (Member # 7633) on :
Hey, that's the exact same thing they told me back in 1988. They told me I had some unknown virus and to learn to live with it or hope it goes away. I spent how much for that????? Kathy
[QUOTE]Originally posted by laura miller: [QB] I am speechless! After $10,000 and I quoting
from my doc at Mayo: "We may never know what kind
of virus Mrs. Miller is experiencing..?"
Posted by bettyg (Member # 6147) on :
last year one of our new members posting said he WAS DIAGNOSED WITH LYME FROM MAYO CLINIC, MINN!
i asked him about the tests he had; can't remember what he said. i wonder if he is still around? Posted by AliG (Member # 9734) on :
Betty,
Do you happen to recall if THAT person presented with a HUGE bulls-eye rash covering his entire face & body, along with CDC positives on whatever tests they could possibly try to find negative, and possibly a thoroughly engorged tick in the center of his eyebrows?
That COULD be possible for both, couldn't it?
----------------------------------------------- I'm blaming the Rice Krispies for this one.
[ 05. February 2008, 02:38 PM: Message edited by: AliG ]
Posted by Robin123 (Member # 9197) on :
That should be a comedy skit - someone coming into the doctor's office looking like what Ali just described, and the duck still not able to figure it out.
Finally diagnosed with targetpracticitis envy, based on archery they did many years ago, and prescribed red and white pills taken alternately, from smaller to larger.
Posted by AliG (Member # 9734) on :
Robin, I think your Dx would be more common there, that's why we're so surprised! Posted by Lymetoo (Member # 743) on :
quote:Originally posted by AliG: Did he have a HUGE bulls-eye rash covering his entire face & body, along with CDC positive Western Blot & Elisa & whatever other tests they could possibly try to find negative?
But do we know if the guy is completely well? How long has he been off abx?? I'm sure they didnt' treat him long enough to make a difference.
Am I sounding skeptical?? What's the matter with me???
Robin....I had to pick myself up off the floor in order to write this!! Posted by lou (Member # 81) on :
Well, Mayo never did diagnose what ailed the TN governor, but he got antibiotics for a presumed tickborne disease anyway.
Posted by Areneli (Member # 6740) on :
I am sure that this guy after 2 weeks of doxy 100 mg day will be fine and cured.
Posted by cordor (Member # 9449) on :
Obviously it seems that noone on this board is too in favor of the Mayo clinic. I sort of agree, in one sense. 20+ years ago when I became sick...my mother flew with me to the Mayo and they came up with nothing. I eventually saw a neurologist here in NJ who diagnosed me with MS based on brain lesions and abnormal evoked potentials. Four years ago, I was diagnosed with Lyme with a positive PCR (again here in NJ) I went thru IV treatment and have gotten progressively worse...especially in the past year. I have MANY things going haywire in my body, but noone can piece it together. We are desperate. I no longer work and not only that...but am totally bedridden since Christmas. My regular doc (not llmd) says I need to go to the Mayo. he told us this 6 months ago and I poo-pooed it. Well, now we are seriously considering it. Maybe they are not so good with lyme....but anyone know how good they are otherwise??????????
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Areneli: I am sure that this guy after 2 weeks of doxy 100 mg day will be fine and cured.
Exactly my fear!
Cordor....I know you are feeling desperate....but please do a search here on Lymenet before spending thousands of dollars at Mayo.
I would hate to see you spend all that money and then have no answers.
How long have you been on abx??
Been treated for babesia and bart??
If you do decide to go, I would suggest going to the same Mayo that "Jack's friend" went to. Posted by canbravelyme (Member # 9785) on :
Cordor,
Do you want to go to the Mayo in order to rule out causes other than Lyme? I don't see how it can hurt, if you're concerned. You can choose to take their advice, or leave it.
Have you considered getting an opinion from a second LLMD, as well?
Best wishes,
Posted by lymie tony z (Member # 5130) on :
Cordor
It's pretty obvious that you had lyme disease all along. Many here have been misdiagnosed as having MS or ALS or CFS/FM....etc and so on....ad infinitum!
I would suggest putting your money where it would do the most good. You don't have to go to the Mayo to try and rule out other possibilities.
It's been my experience that a good LLMD will test you all round for other possibilities prior
to diagnosing your particular problems. Be it lyme or something else.
Believe me when I tell you that no on WANTS to have a diagnosis of lyme disease.
It may seem we are elated whenever a diagnosis of lyme is given because we would have been at a
point where NONE of the Ducks out there have figured what was wrong....or...
were reluctant or downright instructed not to diagnose lyme.
It happens....
So, find a good llmd. They will test you till the cows come home and let you know what you
REALLY have.
My guess is an unresolved TBD infection of one variety or anothere.
You simply were not given a course of antibiotics which were, strong enough, long enough.
That's why you have most probably relapsed.
good luck zman
Posted by adamm (Member # 11910) on :
Cordor,
Have you had an HLA-DR4 test done? Apparently this is a gene
one gene that some people have that makes treating Lyme
effectively exceedingly difficult.
Well, whatever your situation, don't go to Mayo! An LLMD in MN, Dr. V, was affiliated
with their network but ended that association when her
daughter got Lyme. That tells me everything I need to know.
[ 06. February 2008, 02:25 PM: Message edited by: adamm ]
Posted by Tincup (Member # 5829) on :
Can said..
"Do you want to go to the Mayo in order to rule out causes other than Lyme? I don't see how it can hurt, if you're concerned. You can choose to take their advice, or leave it."
There are other reasons NOT to go to Mayo if you have Lyme.. but most folks don't consider that before going... and suffer afterwards, wishing they would have known.
For those reasons I will share my opinion.
1. If you have Lyme and insurance.. once Mayo says "no Lyme".. you will not be able to be tested or treated again with insurance paying for it. Usually never ever ever again... unless you go to a LLMD.
2. If they say, "no Lyme".. which they will... no local or regular doctor after that will want to challenge that diagnosis because the Mayo Clinic said so... so in their mind it must be true.
3. Like Tony Z said.. most LLMD's consider every other diagnosis under the sun... and then some. They don't want you to have Lyme. They also are under fire by insurance companies and medical boards... so they must go the extra 50 miles to be sure they are correct in the diagnosis.
I highly recommend NOT going there for any reason. I have to if I care about Lyme patients.
After watching the line of people coming from there over the years who were blown out of the water.. and NOT diagnosed or treated properly.... and who have since suffered, become disabled and/or died because of their misdiagnosis...
I have to say...
HOLD THE MAYO!
ONE more thing...
I've contacted them about the problem several years ago (ver nicely) in hopes that we would not have so many people hurt.
They were flip, rude, and arrogant... and had no intention on listening to me or educating the doctors there... OR changing their ways.
One of their comments ... when I told them that there were a number of folks who had been misdiagnosed.. was... in a nasty and hateful tone...
"Well, what do you want US to do about it?"
Yeah.. hold the Mayo.
Posted by bettyg (Member # 6147) on :
cordor, please do NOT go there for LYME disease!
many OTHER illnesses they are quite good on; just not lyme!
one woman told me in an email she spent most of 1 year up there $100,000 OUT OF POCKET; NO RESULTS; NO DIAGNOSIS!! Posted by Robin123 (Member # 9197) on :
So if such is the case with Mayo/Say No, how did Jack's friend get diagnosed and treated there?
Posted by MommaK (Member # 10376) on :
I am cutting and pasting the following from a caring bridge journal a new acquaintance with chronic lyme posted. ***** My lyme Dr is convinced that there are other infections that they [ticks] carry that we do not even know about yet. He is leaving North Carolina to work for Mayo Clinic in Washington D.C. Hopefully he will be able to research and find out more. ***** This entry was June 07. Guess he is there now.
The patient, however, is headed to Dr R in MO.
Just wanted to say that a llmd may be recently at ONE Mayo location. Just for reasearch? Don't know.
MommaK
Posted by lou (Member # 81) on :
Here is a case of a woman who failed to get Mayo's help for her lyme disease, went out of state to get treatment, got a catheter infection and because of lack of local support, died. Whereupon, the pathetic disgusting creeps at Mayo wrote up her case as unsubstantiated lyme and inappropriate treatment!! Catheters do get infected, and plenty have at Mayo for other kinds of treatment. They could have helped her, but didn't. I consider this manslaughter. There is no place hot enough in hell for people like this.
So, does anyone really think they can trust Mayo on the basis of one diagnosed case with an unknown amount of treatment and uncertain outcome?
---------------------------------------------
Clin Infect Dis. 2000 Oct;31(4):1107-9.
Death from inappropriate therapy for Lyme disease.
Division of Infectious Diseases, Mayo Clinic and Foundation, Rochester, MN 55905, USA.
A 30-year-old woman died as a result of a large Candida parapsilosis septic thrombus located on the tip of a Groshong catheter. The catheter had been in place for 28 months for administration of a 27 month course of intravenous cefotaxime for an unsubstantiated diagnosis of chronic Lyme disease.
PMID: 11049799 [PubMed - indexed for MEDLINE]
Posted by hiker53 (Member # 6046) on :
I went to Mayo twice (shows where my brains are) and told them I had lyme and they missed it twice and just said I had a idiopathic neurological problem with myoclonus. I would not go there for Lyme again, but I would for other things.
Posted by Lymetoo (Member # 743) on :
quote:
So, does anyone really think they can trust Mayo on the basis of one diagnosed case with an unknown amount of treatment and uncertain outcome?
Wouldn't find ME there for Lyme issues.
Posted by Truthfinder (Member # 8512) on :
Another consideration is money....
Check with your insurance.... I ended up paying a LOT more than the standard co-pay because Mayo did not have to accept the 'approved' amount dictated by my insurance co..... and I was responsible for the difference.
No, I wouldn't go there hoping for help with Lyme.
Posted by mjo (Member # 7876) on :
Wow! Struck a nerve!
I had a dozen TBDers in my living room one Saturday. Half had been to Mayo. Not one was diagnosed there, including moi. Not one of us would ever go back there no matter what nor wish the experience on anyone. Concensus was that Mayo likes nothing more than running up the almighty bill.
Don't forget Linda Hanners book---"Seven Years in Hell" [my Mayo/Lyme story]. So, maybe Jack's friend is actually number 2 or even 3!
Wasn't one of our longest posts ever called HOLD the Mayo?
I'll let you know if Jack comes back to the group and will pump him for more information on the 24 year old guy diagnosed and "treated" at Mayo.
Agreed, what's Mayo treatment? No doubt they used the "Lite" version!
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