mayo clinic

[Guest guest]

In a message dated 3/31/00 5:19:08 PM Eastern Standard Time,

onelist writes:

<< The doctors there, are archaic dinosaurs full of outdated dogma do

do. YA I WAS PISSED.

CFS SUFFERERS: I REPEAT, DO NOT GO TO MAYO CLINIC. THEY DON'T ACCEPT CFS AS

A VALID DIAGNOSIS AND THINK THAT CHENEY IS A QUACK! >>

, we have heard this from other people recently on this list and I think

it is

important to periodically repeat that Mayo is a waste of time and money so

that

nobody else gets taken. $4,500 is a lot of money.

It is customary for new members to the list to give a short introduction of

themselves. Newton has a medical degree and joined the list recently

after I mentioned it to him. Since you are a medical professional, you

might

want to introduce yourself (unless you already have) so that folks might be

able

to pick your brain in your area of knowledge.

Mike

[Guest guest]

The problem with using both an antibiotic and a NSAID at the same time is

that you never know which one is actually working and is effective . For

that it may be worth trying one at a time for a few days (or even a month )

if your condition so permits and see which one is having the actual positive

influence on you and then take that one for a longer time .

Thanks ,

Suranjan

rheumatic Mayo Clinic

Here is the part from the article I mentioned, it is a long article

so I copied the relevant part:

This could be helpful for those trying to convince their doctor about

AP.

Disease-modifying antirheumatic drugs (DMARDs) - These

medications

have been shown to slow or halt the progression of rheumatoid

arthritis. In the past, they were used only if you had severe

rheumatoid arthritis and noticeable joint destruction. Today, DMARDs

are prescribed early to try to prevent destruction. When taken in

proper doses, the drugs aren't as toxic as once believed. Depending

on the drug used, side effects can range from blurry vision to

increased susceptibility to infection.

Several of the most commonly prescribed DMARDs are hydroxychloroquine

(Plaquenil), gold (Myochrysine, Solganal), sulfasalazine

(Azulfidine), and minocycline (Minocin). Sometimes, a combination of

DMARDs may be used if one alone isn't effective.

Because they don't relieve symptoms, DMARDs are taken in addition to

an NSAID, a corticosteroid, or both. The drugs are slow-acting, so it

may take a few months before you notice benefits.

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Suranjan,

As suggested by Dr. Brown, who developed this treatment, it's often wise

to use an nsaid in combination with the antibiotic because if

significant inflammation is present, it can impede the antibiotic's

ability to get to the root cause of the infection. Certainly if you

have swelling in a joint, you need to try to get the swelling down and

nsaids are one of the more effective ways of doing that. I tend to take

my nsaid on an " as needed " basis, in order to take as little as possible

to reduce long term side effects, however, if I get swelling or my pain

goes up significantly, I take it more regularly until I get things back

in control. As for switching back and forth between nsaids and

antibiotics, that's not the greatest idea. First of all, you don't get

instantaneous, dramatic relief from antibiotics, in fact, you often go

through a phase of feeling worse before feeling better any time you mess

around with your antibiotic dosage (called a herxheimer reaction).

Recovery using antibiotics is more of a long, gradual process (months or

even years for full effect) and going on and off the antibiotics could

actually decrease the likelihood of it being effective. Starting for a

month, then stopping for a month won't tell you anything and could end

up even being detrimental so I'd never recommend trying that.

Hugs,

a Peden

" Banerjee, Suranjan " wrote:

>

> The problem with using both an antibiotic and a NSAID at the same time is

> that you never know which one is actually working and is effective . For

> that it may be worth trying one at a time for a few days (or even a month )

> if your condition so permits and see which one is having the actual positive

> influence on you and then take that one for a longer time .

> Thanks ,

> Suranjan

[Guest guest]

Sue,

I have relatives that work at the Mayo Clinic here in Rochester Minnesota.

Let me find a number for you to call. You will need to check with your insurance company regarding your "out of state" benefits.

Chelle (michelle4)

[Guest guest]

Hello, If it wouldn't be to much trouble could I have the # for the mayo

clinic as well, for I am considering seeking advice and possible treatment

for the disease known Sarcoidosis and I feel as though I may be coming to an

end of treatment here with my specialists and need to see if there is

something else they can do...

Thanks Diane Address is Won2keep@...

[Guest guest]

Thank you sooooo much!!!! Sue

--- folchel@... wrote:

> Sue,

>

> I have relatives that work at the Mayo Clinic here

> in Rochester Minnesota.

> Let me find a number for you to call. You will need

> to check with your

> insurance company regarding your " out of state "

> benefits.

>

> Chelle (michelle4)

>

__________________________________________________

[Guest guest]

The Mayo Clinic in ville, Florida is useless for Lyme. Totally

useless.

________________________________________________________________

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[Guest guest]

Thanks, Suzy!

I'm very interested in everything he cares to share with you. This is

important work.

ML,

The Avenging Angel

>From: " suzy nakauchi " <suzynakauchi@...>

>Reply-SSRI medications

>SSRI medications

>Subject: Mayo Clinic

>Date: Tue, 21 May 2002 19:30:37 +0000

>

>Dear Dawn,

>

>Re: Mayo Clinic,

>I am working on contacting Dr. Mrazek. I have called twice and left my

>home

>phone # & e-mail.

>

>If I get through, I'll ask your question about why they are in trials.

>

>Suzy

>

>

>

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

>

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Thanks, Suzy!

I'm very interested in everything he cares to share with you. This is

important work.

ML,

The Avenging Angel

>From: " suzy nakauchi " <suzynakauchi@...>

>Reply-SSRI medications

>SSRI medications

>Subject: Mayo Clinic

>Date: Tue, 21 May 2002 19:30:37 +0000

>

>Dear Dawn,

>

>Re: Mayo Clinic,

>I am working on contacting Dr. Mrazek. I have called twice and left my

>home

>phone # & e-mail.

>

>If I get through, I'll ask your question about why they are in trials.

>

>Suzy

>

>

>

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

>

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

I'm wondering if any of you have gone to one of the Mayo Clinics for your PA. I

didn't find any record of it being discussed in the archives. My husband is

considering going. Mayo's website didn't mention any studies currently underway

to research PA and I'm thinking that the more of us that go there the more they

will see the need to conduct studies. They do, however, claim to have rheumies

specializing in PA, which is why we are interested in going.

And yes, I'm a lurker. As just the wife of a PA'er, I don't often have much to

contribute. But, I certainly appreciate the education I get from what all of

you share.

Thanks,

Krista

[Guest guest]

Hi Jerry,

Well, Dr. Donna Goldman, my hepatologist, wants Dr. Czaja at Mayo to

look over my second biopsy results (to be done this Feb), and basically,

give his blessing that AIH was the correct diagnosis.

Thanks for asking!

RE: [ ] Mayo Clinic

.... what kind of evaluation?....... when I was evaluated for Tx I

spent 3 days at the Cleveland Clinic and went thru a bunch of different

tests and consultations.

[Guest guest]

So good to hear you a. What a lot to digest so soon. My thoughts will

be with you that it gets better going on that drive and that they may find

some answers for you now that all these questions arise. Have a good

afternoon and thank you for letting us know your progress with the clinic.

Till soon, Melt

----- Original Message -----

From: " a " <pjohnson@...>

> Hello all! I've made several trips now to the Mayo Clinic. It's a 2 hour

> drive and the drive is getting harder and harder on the pain in my legs.

At

> my last visit the Rheumatologist said he doesn't think I have Stills

> Disease. He said I don't have the inflammation and it's not just pain in

my

> joints, I hurt all over.

[Guest guest]

Hi a,

Thank you for the report. Glad you like your doctor.

He doesn't have any answers as to why you are in

so much pain all over? Hmmmm. I wonder what in

the world is causing your problems? He doesn't have

any answers, but does he have any suspicions, or

doesn't he say?

Thanks again for letting us know.

~~tricia~~

Wisconsin

p.s. a, I know how you like spooky stories etc. a big

bear was sighted just down the road from us Sunday...in

the daytime.

*********************************************************************

-- Mayo Clinic

Hello all! I've made several trips now to the Mayo Clinic. It's a 2 hourdrive and the drive is getting harder and harder on the pain in my legs. Atmy last visit the Rheumatologist said he doesn't think I have StillsDisease. He said I don't have the inflammation and it's not just pain in myjoints, I hurt all over. He doesn't have any answers but he disagrees withthe Stills diagnosis. He also mentioned the fact that I don't have thefever or rash. I did have the fever and rash at the onset and I still getthe rash occasionally. I like this rheumatologist, I just wish the drivewasn't so far. They've also been checking on my thyroid and that doctorsaid he thinks it's the combination of medications that is making my thyroidtest come out abnormal. And I have a problem with my right sinus which theyare doing tests on. Plus they want me to go to the sleep clinic and thepain rehabilitation clinic. a , Administrative Assistant Faribault Foods, Inc. 3380 Mithun Tower 222 South 9th Street Minneapolis, MN 55402Tele: 612-333-6461 Fax: 612-342-2908

[Guest guest]

" > I am very intrigued by D & M 's " Pulmicort Respule in the

> saline nasal wash " . I have heard that pulmonary inflammation found

in

> asthma patients is very similar to that found in Samter's patients

> and I am going to talk to my ENT about this as a possible

solution. "

I too think this is an interesting way to go and wonder if I can use

this. I was going to ask about it Monday when I went to ENT and got

so excited about other news I completely forgot a few things I wanted

to discuss...next time I will take a list of questions with me. One

thing we did discuss was the theory of fungus being the cause of

sinusitis that Mayo adheres to. My ENT doesn't go along with that one

so I guess it would depend on who your doctor is as to what they

believe. It is strange that different doctors support different

theories...which one is right and how do you know? Trudy.

[Guest guest]

hi all

for what it is worth, my ent had me try the mayo clinic fungus wash.

didnt work for me at all. my sinuses became even more inflamed and

irritated - tried it for about month.

jennifer (ny)

>

> " > I am very intrigued by D & M 's " Pulmicort Respule in the

> > saline nasal wash " . I have heard that pulmonary inflammation found

> in

> > asthma patients is very similar to that found in Samter's patients

> > and I am going to talk to my ENT about this as a possible

> solution. "

>

> I too think this is an interesting way to go and wonder if I can use

> this. I was going to ask about it Monday when I went to ENT and got

> so excited about other news I completely forgot a few things I wanted

> to discuss...next time I will take a list of questions with me. One

> thing we did discuss was the theory of fungus being the cause of

> sinusitis that Mayo adheres to. My ENT doesn't go along with that one

> so I guess it would depend on who your doctor is as to what they

> believe. It is strange that different doctors support different

> theories...which one is right and how do you know? Trudy.

[Guest guest]

: I agree that the amphotericin B nasal wash seemed to cause way

more rhinitis for me than it helped. Funus may be the cause of some people's

sinusitis but I don;t think it explains everything. I do thing Samter's

patients are really a different subgroup. Carol

Re: Mayo Clinic

>

>

> hi all

>

> for what it is worth, my ent had me try the mayo clinic fungus wash.

> didnt work for me at all. my sinuses became even more inflamed and

> irritated - tried it for about month.

>

> jennifer (ny)

>

>

>>

>> " > I am very intrigued by D & M 's " Pulmicort Respule in the

>> > saline nasal wash " . I have heard that pulmonary inflammation found

>> in

>> > asthma patients is very similar to that found in Samter's patients

>> > and I am going to talk to my ENT about this as a possible

>> solution. "

>>

>> I too think this is an interesting way to go and wonder if I can use

>> this. I was going to ask about it Monday when I went to ENT and got

>> so excited about other news I completely forgot a few things I wanted

>> to discuss...next time I will take a list of questions with me. One

>> thing we did discuss was the theory of fungus being the cause of

>> sinusitis that Mayo adheres to. My ENT doesn't go along with that one

>> so I guess it would depend on who your doctor is as to what they

>> believe. It is strange that different doctors support different

>> theories...which one is right and how do you know? Trudy.

>

>

>

>

>

>

>

>

[Guest guest]

I have not had any luck with the anti-fungal wash either but I

continue to use it; amphoteracin 2x / day.

> >

> > " > I am very intrigued by D & M 's " Pulmicort Respule in

the

> > > saline nasal wash " . I have heard that pulmonary inflammation

found

> > in

> > > asthma patients is very similar to that found in Samter's

patients

> > > and I am going to talk to my ENT about this as a possible

> > solution. "

> >

> > I too think this is an interesting way to go and wonder if I can

use

> > this. I was going to ask about it Monday when I went to ENT and

got

> > so excited about other news I completely forgot a few things I

wanted

> > to discuss...next time I will take a list of questions with me.

One

> > thing we did discuss was the theory of fungus being the cause of

> > sinusitis that Mayo adheres to. My ENT doesn't go along with that

one

> > so I guess it would depend on who your doctor is as to what they

> > believe. It is strange that different doctors support different

> > theories...which one is right and how do you know? Trudy.

[Guest guest]

,

Thanks for your positive information about Mayo Clinic. I am planning to

go to the ville, FL clinic. Is this Mayo's where you went? If the

doctors find something else that they may suspect is going on with you, do you

see another doc of that specialty the same day (or next) or do you have to

return for an appt. with them? Glad they were able to help you with your

fatigue.

RJ

[Guest guest]

In a message dated 11/8/2004 6:20:04 AM Eastern Standard Time,

dollyword@... writes:

Is this Mayo's where you went? If the

doctors find something else that they may suspect is going on with you, do

you

see another doc of that specialty the same day (or next) or do you have to

return for an appt. with them? Glad they were able to help you with your

fatigue.

RJ

RJ...I went to ville. They schedule you with one doctor when you get

there, who sets up any labs or xrays or other doctors that you need. If

they decide you need to see someone else based on test results, they will set

the appt up ASAP...I was there on a Thursday and Friday, then had to go back on

a Monday. Depending on how far away you are, I would recommend that you get

a Mon appt to try to get everything done in one trip. I live in Orlando so

2 trips was a bit inconvenient. I stayed at the Marriott Courtyard which is

on the campus and very convenient. Bring some good books because you will

have a lot of time in between appts.

[Guest guest]

In a message dated 4/26/05 1:05:42 AM, dave@... writes:

The doctors who work with PA cases may be rare, but in my area of the

NW USA, those I have spoken to in my search all defer to Mayo Clinic in

Missesota as having the most complete diagnostic unit in the country.  

Looking for the first time at their description of PA for the public I

found :

http://www.mayoclinic.com/invoke.cfm?id=DS00563

Look for the lower right corner of each page to click "next section." 

The little sidebar links are also interesting.    If only GPs, ER and

other practitioners were required to SKIM this article, we might have a

bit easier time of it.

Dave

[Guest guest]

I think I posted this recently, but I will re-post for you. Also, the

apraxia-kids listserv has some recent messages on Mayo clinic trips.

FYI - our trip bill from Mayo was a little over $7k, though our

insurance will pay for most. Feel free to email with additional

questions.

We just got back from Mayo evaluation for 4 days in february. My son

is 3.2yo with severe speech issues. non verbal at

2.5, can now say 25 words, 80% of which you would not understand

without

context. He has appeared so far to have no other physical/mental

issues. He

had seen a dev pediatrician, ped neuroglogist, had MRI which showed

slight

misformation of the corpus collosum with uncertain significance, and

a ton

of speech therapists. He also had a severe tongue tie which was

clipped whe=

n

he was 2.5, but didn't help much with his speech. Last year he was

unable t=

o

move his tongue really, but unclear whether it had to do with tongue

tie or

oral apraxia. He is much better at that now, though not completely

normal.

The diagnosis was mod/severe apraxia. We went to Mayo to see Strand

to get

her expert opinion on his condition, as well as a prognosis for the

future,

if we could. We also wanted to see the best drs available to find out

if he

did actually have any other problems, since it is unusual to have

apraxia

without any other medical issues.

We saw a ped neurologist, Dr. Kotagal, who sent us to an

endocrinologist (m=

y

son is small, with a particularly small head), and a medical

geneticist (he

saw some soft physical signs of potential genetic issues). All the

doctors

we saw were very thorough and good, and the Mayo clinic is a fabulous

facility -very organized for this sort of thing. It is also very

kid-friendly, with TVs every where to occupy them during the waiting,

and

never more than a 15 mon wait for a doctor even thought he appts are

sometimes scheduled last minute.

The endocrinologist examined my son and did some blood tests and found

nothing wrong on that front, which I expected. The medical geneticist

spent

an hour looking at him and ordered a number of DNA and chromosomal

blood

tests. Those results have not come back yet, so we don't know the

answer ye=

t

on that front. I don't exepect anything, but you never know.

I now feel on the medical front that we have done everything we

possibly

could to be sure that nothing else is wrong with him that we should

know

about, and that was part of our purpose in going to Mayo.

Dr. STrand saw him in 2 sessions and did numerous evaluations of

him,including having me elicit speech from him and videotaping him.

Her

initial thoughts at the end of the sessions were that he actually had

mild

apraxia and also a phonological processing disorder. We just received

her

final report 3 weeks later, and she had decided (after reviewing

tapes and

thnking about it more) that the apraxia is still moderate to severe,

with

some phono processing issues. She had some recommendations for

additional

strategies for our current speech therapists which i will let them

know

about, and should be very useful in his treatment. She also told me

when we

were there that she was pretty good at accurate prognosis (which

everyone

else I spoke to was unable/unwilling to commit to), and she felt that

he

would speak normally at some point. I said " at 5, 6 or 7? " and she

said

" probably by then " .

I felt it was well worth it. However, it is for the most part covered

by ou=

r

PPO insurance too. I will probably end up paying under $1000 out of

pocket,

and our final bill was above $7000, I think, for everything.

We stayed at the Staybridge Suites, by the way, which was great.

Separate

bedroom and a good amount of space, clean, full kitchen, helpful

staff, goo=

d

shuttle to the clinic. Small pool and hot tub. $135 a night for the

medical

rate.

>

> Hi everyone,

>

> My husband and I are thinking about taking our daughter (age 6.6)

to Mayo Clinic up in Minnesota for an evaluation, and I would

appreciate input from anyone who has done this.

>

> The main thing I am trying to determine is what the benefit would

be. Don't get me wrong--I have heard rave reviews from people who

have gone through the Mayo system, including from my own parents--and

this is actually WHY we are considering doing it, too. But given the

fact that it's going to be out of network for us as far as insurance,

and also that we have been to a number of specialists already in our

area, I want to make sure I have thought it all through.

>

> We are currently under the care of a neurologist by the name of Dr.

Chez for her abnormal EEG. He is thinking about putting her on

Zarontin now (you probably saw my post about that yesterday...thanks

again to all who responded). We also are under the care of a child

psychologist and a couple of SLPs as well. We have had some genetic

testing done, though I am told it was basic testing, not super in-

depth. She has had an MRI that came back normal. Other than that,

she has sensory integration dysfunction, probable auditory processing

disorder, and possibly ADD--the latter two issues cannot be dx'ed yet

as she is too young.

>

> I guess I am wondering, what types of doctors or specialists would

we see up there? Do they determine that for you or do you have to

tell them what you want? (That would be difficult for me to

determine, honestly.)

>

> In a perfect world, I'd probably take my son there, too, as he has

an arachnoid cyst in his brain that we are monitoring. But so far

the docs are comfortable just watching it.

>

> Anyone who has thoughts to share, please do. I appreciate all your

advice, as always.

>

> ~, IL

> Mom to three special kids, two of them EXTRA " special " !

>

>

[Guest guest]

Hi ,

Thank you so much for re-sending that post. I remember now that I read it before

but it was a good reminder, and now I am keeping all the responses I get in a

Word file so I can review them!

Thank you again for the wonderful information, and I am so happy that you were

able to do this and get the expert help that you received.

[Guest guest]

hi rachel- my name is charlotte henry- i was what they call a seial patient

at mayo in 97 and 98 in rodchester minnesota and i just wondered if you were at

the rodchester clinic to, i enjoyed my stay at the kaehler hotel- charlotte

henry

[Guest guest]

Hi Charlotte - we were at the Rochester clinic, which was fabulous. The

Kaehler looked lovely, but we needed a suite hotel with a bedroom for

my son's naps.

>

> hi rachel- my name is charlotte henry- i was what they call a seial

patient

> at mayo in 97 and 98 in rodchester minnesota and i just wondered if

you were at

> the rodchester clinic to, i enjoyed my stay at the kaehler hotel-

charlotte

> henry

>

>

>

[Guest guest]

they are great there- id like to go back sometime for a getaway- charlotte