doctors

[Guest guest]

look at the message I sent to Jimmy. Makal

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[Guest guest]

> look at the message I sent to Jimmy. Maka

Thank You very much-Do you also have any doctores in london

Thanks

>

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[Guest guest]

>Seems sad to me (and maddening) that there is NO accountability in our

health care system. In any other business you are NOT paid unless you

provide the service you are being paid for. A plumber

>would not get paid if the toilet does not flush! Doctors should NOT be

paid for doing haphazard, shoddy work. If they can't manage a patients

care with understanding and competence then perhaps

>they should be in another career. Because THAT is what being a physician

is all about. Some one needs to start holding these people accountable!!!

>

>Marcia

>

Hi,

It is true that docs are not accountable at all! So I wonder what could be

done to make them be accountable?? They do tend to close ranks and cover

for collegues mistakes- reporting to medical socieities doesn't necessarily

work, being assertive can get you fired and " blacklisted " and it is

enormously difficult to bring a lawsuit.

Does anyone have any ideas?

CHristie

tab@...

>

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>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

[Guest guest]

> >

>

> Dear Christa,

>

> My PCP keeps sending me to specialists, who in turn tended to send me

> elsewhere - excpect for the RHEUM at U of Michigan who told me to join a

> gym. And yes, I believe PCP expects me to " live " with it. What I cannot

> forgive is her indifference during this crisis - there are times when we

> cannot do the driving - literally and figuratively, and need our doctor to

> do their job!

>

> Thanks for writing,

>

> Christie

> tab@...

>

Seems sad to me (and maddening) that there is NO accountability in our health

care system. In any other business you are NOT paid unless you provide the

service you are being paid for. A plumber

would not get paid if the toilet does not flush! Doctors should NOT be paid for

doing haphazard, shoddy work. If they can't manage a patients care with

understanding and competence then perhaps

they should be in another career. Because THAT is what being a physician is all

about. Some one needs to start holding these people accountable!!!

Marcia

[Guest guest]

In a message dated 8/20/99 12:49:55 PM Eastern Daylight Time,

mgrahn@... writes:

> Wow, guess you really hit a NERVE for me with this subject!

Hi Kids.....

Drs were just on my mind, You all must have esp, my original Dr just

quit the profession, his wife is chronically ill and word has it that he is

just too tired of working for insurance co.s and being told how to treat, how

long he is aloowed to spend, etc etc with his patients. Then my second GP

also quit and moved out west, both of these Drs were not able to help me yrs

back but they knew something was wrong, and cared , compassion goes a long

way, one sent me to the behavorial chronic/cfs/fm/ pych and wow that was

nice. I just about cried at my last appt. like leaving the security of home

for the first day of school.

Even our closest healthy friends,family do not understand us, not

knowing how to help etc. , so I know the %s of the medical pros are the same.

Drs and Med people with cfids/fms/mcs/mycos/etc etc , do know and

understand.

The wheels of progress and educating is so darn slow, thats why we have to

bite the bullet and smile and try to educate, and learn ourselves. Hoping

that many after us will beware of some of the pitfalls we have experienced.

Susy tiredpuppydog

[Guest guest]

C.Tab. wrote: It is both amazing and scary that so many DR's seem to have so

> little medical curiosity and are comfortable sending an ill person to therapy!

And sentencing us to a wasted life without hope (from them) of careers, trusting

friend and familiy relationships etc. They may know something really is wrong,

but its just too much trouble to

find out what it is, so much easier to label one crazy or depressed, making us

wear that label throughout life and enduring harsh undeserved judgements from

family, friends, the medical community

and the whole world. All because they are too busy making too much money to

worry about those who are truly suffering with no easy answers, or they

can't/won't admit, " I don't know whats wrong,

but there is definitely something wrong " . The few specialists in CFS are being

worked to death to try and cover for all the neglect we experience by the

medical community at large and they deserve

our undying gratitude. They are risking their own health for us.

Wow, guess you really hit a NERVE for me with this subject!

Marcia

[Guest guest]

Hi,

I couldn't resist this newest Stupid Dr. Trick!

I just opened my records this week from hospitalization in July. An

enlarged kidney showed up in one of the scans - " significantly enlarged " it

said, and a renal scan was suggested which common sense says could have

been done in hospital. The kicker is that no one told me, and there were

many, like my PCP(duh!), who could have. When I had check-up with Gastro

yesterday, I asked about this and he said kidneys were not his concern. I

countered with that wasn't the point! I needed this important info! He

said that it was probably assumed that I already know about it, and he said

this with a straight face. And this is one the better DR's I have! The

lesson here is to always request your records and trust no one. I am

having gut problems again and being captive in hospital under general

ansthesia scares the **** out of me. These people are simply too

irresponsible to entrust them with your life! So now I get to go to kidney

doc and hope she will do renal scan - sigh... Oh yes! I now again have

sinusitis - the disorder that Cleveland DR said I never had, in spite of a

ton of records stating otherwise. I do believe DR's drive us nuts, then

send us to shrinks to get rid of us! But thank goodness for the DR's who

do care.

Take care,

CHristie

tab@...

>

>

>C.Tab. wrote: It is both amazing and scary that so many DR's seem to have so

>

>> little medical curiosity and are comfortable sending an ill person to

therapy!

>

>And sentencing us to a wasted life without hope (from them) of careers,

trusting friend and familiy relationships etc. They may know something

really is wrong, but its just too much trouble to

>find out what it is, so much easier to label one crazy or depressed,

making us wear that label throughout life and enduring harsh undeserved

judgements from family, friends, the medical community

>and the whole world. All because they are too busy making too much money

to worry about those who are truly suffering with no easy answers, or they

can't/won't admit, " I don't know whats wrong,

>but there is definitely something wrong " . The few specialists in CFS are

being worked to death to try and cover for all the neglect we experience by

the medical community at large and they deserve

>our undying gratitude. They are risking their own health for us.

>

>Wow, guess you really hit a NERVE for me with this subject!

>

>Marcia

>

>

>---------------------------

[Guest guest]

At 02:03 PM 8/20/99 EDT, you wrote:

>From: SUSYDOG@...

>

>In a message dated 8/20/99 12:49:55 PM Eastern Daylight Time,

>mgrahn@... writes:

>

>> Wow, guess you really hit a NERVE for me with this subject!

>Hi Kids.....

> Drs were just on my mind, You all must have esp, my original Dr just

>quit the profession, his wife is chronically ill and word has it that he is

>just too tired of working for insurance co.s and being told how to treat,

how

>long he is aloowed to spend, etc etc with his patients. Then my second GP

>also quit and moved out west, both of these Drs were not able to help me yrs

>back but they knew something was wrong, and cared , compassion goes a long

>way,

SO TRUE!

one sent me to the behavorial chronic/cfs/fm/ pych and wow that was

>nice. I just about cried at my last appt. like leaving the security of home

>for the first day of school.

Can understand this as caring docs are so hard to find and keep!

> Even our closest healthy friends,family do not understand us, not

>knowing how to help etc. , so I know the %s of the medical pros are the

same.

> Drs and Med people with cfids/fms/mcs/mycos/etc etc , do know and

>understand.

>The wheels of progress and educating is so darn slow, thats why we have to

>bite the bullet and smile and try to educate, and learn ourselves. Hoping

>that many after us will beware of some of the pitfalls we have experienced.

>

>Susy tiredpuppydog

On my lupus list, there is a tread about biting the bullet and dealing with

DR's also. Either something is going around or way too many people are

having same experiences with medical system ( the more logical

explanation!). Yes we do have to keep on keeping on learning and

educationing. Thank goodness for this list!

Christie - also a bit tired

tab@...

>

[Guest guest]

In a message dated 8/20/99 12:49:55 PM Eastern Daylight Time,

mgrahn@... writes:

> And sentencing us to a wasted life without hope (from them) of careers,

> trusting friend and familiy relationships etc. They may know something

> really is wrong, but its just too much trouble to

> find out what it is, so much easier to label one crazy or depressed,

making

> us wear that label throughout life and enduring harsh undeserved judgements

> from family, friends, the medical community

> and the whole world. All because they are too busy making too much money

to

> worry about those who are truly suffering with no easy answers, or they

can't/

> won't admit, " I don't know whats wrong,

> but there is definitely something wrong " .

Marcia, I have watched, read & experienced CFS for 15 yrs now and there are

some glimmers of knowledge seeping out to the drs and public. But you are

correct as in any illness, there is quite a bit of money to be made for some.

Take care

Susy

[Guest guest]

Margaret,

So far we have had good experince with Egleston not Emory. But that could change anytime. I am not aware of any of the gatherings they have for DS Ass. I would love to hearn more about them when and where. If it is at all possible I will try to come.

Thanks, mom to 6 1/2 and Dayton 21months both (DS)

-----------------------------------------------------Click here for Free Video!!http://www.gohip.com/freevideo/

doctorsFrom: " greysean " <greysean@...>

Haven't heard of that doctor but we ended up with most of our doctors over at ish Rite since thats where they took him the day after birth from Piedmont. Its funny since we live right around the corner from Emory but travel across town to ish Rite. I will say the one experience we had at Emory wasn't all that great. was hospitalized for RSV and they acted like they had never seen a person with DS and brought in parades of students to learn about DS to 's detrement. I finally asked them to stop because it got really bad, so I wasn't too happy with their teaching hospital situation. But that could be the main doctor who saw us was very young and pompas and he was the main one parading people thru at all hours waking up and trying to do other unnessary procedures just so students could learn how DS affected people. I think we just had a bad experience - no one else I know ever has had any problems. Glad you all are home and all is well. had his ent check up and all is well so far. Now we get to go to the dentist. Greyson went and loved him actually asks to go back all the time - its a Dr. again far away from us. Saretta and her girls use him and have been happy. Do you ever come up to Atlanta for any of the DS Association gatherings?

Margaret w/ Greyson and (ds)- 3 and Annice -21 mos.

http://DSyndrome.com/Multiples

[Guest guest]

Anne this post was a general discussion and was not aimed at you in the slightest.

"I was very good at what I did! I always put my patients first, and treated them the way I wanted to be treated, too bad I do NOT get the same consideration."

I am sure you were very good at what you did Anne - your knowledge has helped many here. No one was accusing you of anything.

"In many cases, if you keep quiet when you don't agree with what is being done to you, you are just inviting them to walk all over you!"

And I agree with that too!! God knows if you keep quiet when you know you need help then you wont get the help you need.

"It is bullshit! But you know more than I ever will I guess, or it sure seems that way because everytime I open my mouth, you are correcting me Aisha. I am the only one that lives in my body, so maybe just maybe I know more about me than anyone ever will!"

I was not correcting you - hell the post wasnt even about you. It was just an opinion. I do not know what is best for you - only you do.

"If you decide to boot me from this list, that is your choice."

Actually its not. I am just a moderator - one of 6. Everyone has to agree to boot someone, which has never happened. We prefer for people to make choices about staying on the list for themselves, for only they know what to do. We do our best to make this list a community for all. We put our hearts and soul into this list. I might have had the idea to start it - but its not "my" list. It is everyones list.

"The whole thing about "Doctors being Dumb" was written with humor in mind, I was just saying that "you" shouldn't take everything they say so seriously. "

And from that sprung up a new topic, with new subject. It had nothing to do with your post. It was a new thread.

"Do what you want to me, I just had to say what I was feeling, especially since just about every message that I have sent to the group, has been corrected by someone. And then you agreeing whole heartedly with their opinion was just one more knife in my back than I could take!"

You are welcome always to share your opinions and voice how you feel. It is what this list is about. I was not correcting you. Only you know how you feel, its your body - you are the expert. I wish the Dr's had a clue as to why you have such terrible allergies, and I am sory for all the things people have done to you and everyone else on this list. For all in the world for that matter. If I could fix it I would.

The post, however, was not in any way in reference to you, disagreeing with you, or stabbing you in the back. I am not like that. The post was a discussion about doctors and merely an opinion.

Aisha.

[Guest guest]

I don't get it! Anne

Um Anne you dont get it cause you mistake peoples opinions for pot shots at yourself. Have your opinion fine, but everybody else is entitled to have one too without you thinking we are trying to insult you. Chill please.

Melinda

Re: DoctorsAisha Elderwyn wrote: " >Because doctors are DUMB! I hardly think that Doctors in general can be considered " dumb " . Think of all the medical knowledge in the entire world, everything that we expect them to just " know " ...They can't know everything, they are human too. My only problem with doctors is when they won't admit that they aren't sure, that they have to look into things further before they are postive about something. " I think thats really well said Dee. So as usual, I am just wrong! Thanks for making that point to me yet again! Some people just shouldnt be in the medical profession but you could say that for the same of any profession. Look at journalists, lawyers, managers etc And people in general - Some people are just plain dumb! (They are on our slapping list! LOL) I think in todays society you expect a dr to give you an instant diagnosis and miracle pill to make you well. Certainly the dr's I found that are decent have also wished they could do that. They work very long hours and I think the good ones deserve all the $$ they make. I was very good at what I did! I always put my patients first, and treated them the way I wanted to be treated, too bad I do NOT get the same consideration. I agree that it would be better for them to say " Well I'm not sure why you are ill " but sometimes the patient would just freak out. Not knowing a patient (since they may have met them once or twice) is safer to be quiet. In many cases, if you keep quiet when you don't agree with what is being done to you, you are just inviting them to walk all over you! I will not let anyone walk all over me ever again! Not my family, my friends, the doctors, nurses, paramedics, medical field in general!! It will not ever happen again if I have anything to say about it!!! The only way my specialist could diagnose sarcoidosis was by eliminating every possible thing it could be first. This took time, and yes I was frustrated and thought he was fishing in the dark when he wasnt, but how many patients would freak out if you told them " You could have X " and then when they read up about X they find it could kill you. Espeically if it turns out they dont have X. So while I agree its frustrating that they dont tell you when they are looking for a diagnosis, I can understand it. I never asked for a miracle cure! I never asked for a magic pill, the only thing I have asked for " is that they keep looking to find out what is going on, why my allergies are this bad! " But because I don't fit textbook definitions, they have just stopped trying, & now only can label me as being a " Psychiatric Patient " . So it affects the way I get treated by everyone... doctors, nurses, paramedics, my family, my friends, the world in general. Eventually though, if you stick with the good ones you find out everything you need to know but you do have to ask. I have asked, I have begged, I have pleaded, & I have gotten NOWHERE real FAST!!! I think it must be tough to be a good Dr, cause you are always in demand - work from like 5:30am till 9pm at night or later, on call 24/7, and people expect you to have all the answers. I know that my Dr hates not having all the answers. But thats life. No one ever has all the answers.... I don't expect anyone to have all the answers, but I do expect to be treated with kindness, compassion, and to be given credit for having a brain. Instead the doctors are now using my extensive medical knowledge against me, as a symptom of whatever psychiatric diagnosis they are trying to pin on me at that moment in time!! It is bullshit! But you know more than I ever will I guess, or it sure seems that way because everytime I open my mouth, you are correcting me Aisha. I am the only one that lives in my body, so maybe just maybe I know more about me than anyone ever will! If you decide to boot me from this list, that is your choice. I just couldn't take being reprimanded one more time for opening my mouth. And doing this conversation off list, isn't going to help, because the reprimands have for the most part have been done on the list. For everyone to read and agree or disagree with. The whole thing about " Doctors being Dumb " was written with humor in mind, I was just saying that " you " shouldn't take everything they say so seriously. Because really even though most doctors think they know everything, they do NOT! And they need to be reminded of that fact sometimes! *hugs* I don't feel hugged, I feel repeatedly reprimanded for opening my mouth, expressing my feelings, or stating my opinion! And I know that I am not the ONLY one on here that feels this way. I will NOT name anyone, but I won't just sit here & watch it happen to anyone else. I know that many people are getting their feelings hurt, and I won't stand by and watch anymore!! Do what you want to me, I just had to say what I was feeling, especially since just about every message that I have sent to the group, has been corrected by someone. And then you agreeing whole heartedly with their opinion was just one more knife in my back than I could take! If I am booted. I am sorry, and I will miss so many people on this list. But I can't sit here and let people who are supposed to be on 'my side' treat me the same way that I am treated by the medical field, my family, some friends, etc. I don't get it! AnneThe Being Sick CommunityVisual problems with colors?Click the link below and select the modify link to your right. Then select the **Send Plain Text Email** option. This will stop you receiving emails with colored or enlarged fonts. 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[Guest guest]

Wow, did I miss some personal attack or something? I'm trying to keep up

with things, but geeze, I guess I missed something somewhere. Sounds like

someone is feeling like a victim today. Don't victimize yourself, Anne,

you're too good for that. And don't take that as a personal attack, just

some advice from someone who victimized herself for far too long.

Dee

>From: Anne <amacgruder@...>

>Reply-egroups

>egroups, Aisha Elderwyn <aisha@...>

>Subject: Re: Doctors

>Date: Sat, 14 Oct 2000 23:56:10 -0700

>

>Aisha Elderwyn wrote:

>

> > " >Because doctors are DUMB!

> >

> > I hardly think that Doctors in general can be considered

> > " dumb " . Think of all the medical knowledge in the entire

> > world, everything that we expect them to just

> > " know " ...They can't know everything, they are human too.

> > My only problem with doctors is when they won't admit that

> > they aren't sure, that they have to look into things

> > further before they are postive about something. " I think

> > thats really well said Dee.

> >

> > So as usual, I am just wrong! Thanks for making that

> > point to me yet again!

> >

> > Some people just shouldnt be in the medical profession but

> > you could say that for the same of any profession. Look at

> > journalists, lawyers, managers etc And people in general -

> > Some people are just plain dumb! (They are on our slapping

> > list! LOL) I think in todays society you expect a dr to

> > give you an instant diagnosis and miracle pill to make you

> > well. Certainly the dr's I found that are decent have also

> > wished they could do that. They work very long hours and I

> > think the good ones deserve all the $$ they make.

> > I was very good at what I did! I always put my patients

> > first, and treated them the way I wanted to be treated,

> > too bad I do NOT get the same consideration.

> > I agree that it would be better for them to say " Well I'm

> > not sure why you are ill " but sometimes the patient would

> > just freak out. Not knowing a patient (since they may have

> > met them once or twice) is safer to be quiet.

> >

> > In many cases, if you keep quiet when you don't agree with

> > what is being done to you, you are just inviting them to

> > walk all over you!

> >

> > I will not let anyone walk all over me ever again! Not my

> > family, my friends, the doctors, nurses, paramedics,

> > medical field in general!! It will not ever happen again

> > if I have anything to say about it!!!

> >

> > The only way my specialist could diagnose sarcoidosis was

> > by eliminating every possible thing it could be first.

> > This took time, and yes I was frustrated and thought he

> > was fishing in the dark when he wasnt, but how many

> > patients would freak out if you told them " You could have

> > X " and then when they read up about X they find it could

> > kill you. Espeically if it turns out they dont have X. So

> > while I agree its frustrating that they dont tell you when

> > they are looking for a diagnosis, I can understand it.

> >

> > I never asked for a miracle cure! I never asked for a

> > magic pill, the only thing I have asked for " is that they

> > keep looking to find out what is going on, why my

> > allergies are this bad! "

> >

> > But because I don't fit textbook definitions, they have

> > just stopped trying, & now only can label me as being a

> > " Psychiatric Patient " . So it affects the way I get

> > treated by everyone... doctors, nurses, paramedics, my

> > family, my friends, the world in general. Eventually

> > though, if you stick with the good ones you find out

> > everything you need to know but you do have to ask.

> >

> > I have asked, I have begged, I have pleaded, & I have

> > gotten NOWHERE real FAST!!!

> >

> > I think it must be tough to be a good Dr, cause you are

> > always in demand - work from like 5:30am till 9pm at night

> > or later, on call 24/7, and people expect you to have all

> > the answers. I know that my Dr hates not having all the

> > answers. But thats life. No one ever has all the

> > answers....

> >

> > I don't expect anyone to have all the answers, but I do

> > expect to be treated with kindness, compassion, and to be

> > given credit for having a brain.

> >

> > Instead the doctors are now using my extensive medical

> > knowledge against me, as a symptom of whatever psychiatric

> > diagnosis they are trying to pin on me at that moment in

> > time!!

> >

> > It is bullshit! But you know more than I ever will I

> > guess, or it sure seems that way because everytime I open

> > my mouth, you are correcting me Aisha. I am the only one

> > that lives in my body, so maybe just maybe I know more

> > about me than anyone ever will!

> >

> > If you decide to boot me from this list, that is your

> > choice. I just couldn't take being reprimanded one more

> > time for opening my mouth. And doing this conversation

> > off list, isn't going to help, because the reprimands have

> > for the most part have been done on the list. For

> > everyone to read and agree or disagree with.

> > The whole thing about " Doctors being Dumb " was written

> > with humor in mind, I was just saying that " you " shouldn't

> > take everything they say so seriously. Because really

> > even though most doctors think they know everything, they

> > do NOT! And they need to be reminded of that fact

> > sometimes!

> > *hugs*

> > I don't feel hugged, I feel repeatedly reprimanded for

> > opening my mouth, expressing my feelings, or stating my

> > opinion! And I know that I am not the ONLY one on here

> > that feels this way. I will NOT name anyone, but I won't

> > just sit here & watch it happen to anyone else. I know

> > that many people are getting their feelings hurt, and I

> > won't stand by and watch anymore!!

> >

> > Do what you want to me, I just had to say what I was

> > feeling, especially since just about every message that I

> > have sent to the group, has been corrected by someone.

> > And then you agreeing whole heartedly with their opinion

> > was just one more knife in my back than I could take!

> >

> > If I am booted. I am sorry, and I will miss so many

> > people on this list. But I can't sit here and let people

> > who are supposed to be on 'my side' treat me the same way

> > that I am treated by the medical field, my family, some

> > friends, etc.

> >

> > I don't get it!

> > Anne

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[Guest guest]

When I was jumping from dr. to dr. in Incline Village during the 1985

epidemic, I had already been to Cheney (before he recognised that

there was an epidemic) and was at a dr. just a few buildings away

from

Cheney & on Northwood ave. and was given prednisone and told

that my illness was due to stress and would likely go away soon. When

it didn't and I read that hundreds of other people were having the

same problem I took the newspaper to my doc and asked why he hadn't

told me about this (it was front page in our local paper). He told me

that he knew all about the so called epidemic but that Cheney and

were quacks and they were so maligned for perpetuating

hysterical hypochondria that they were likely to be run out of town

before they ruined Tahoes tourist trade. Needless to say I scuttled

down the street back to dr. Cheney immediately. This doctor knew

that

there were others like me but didn't tell me. (he left town a long

time ago) These types of doctors are treating us like individual nut

cases and chopping us up and spitting us out even though they know

about the hundreds of thousands of us all complaining about the same

thing. We need a bad dr. list to protect ourselves. We have the

right

to identify these doctors. They steal your money, your time, your

self respect. They undermine your relationship with family and

friends

and bosses by invalidating your illness. I know of doctors who tell

every PWC who goes there that they've never seen or heard of anything

like their complaints. I guess they've never seen or heard their

patients, or read the paper, or watched tv, or reviewed any abstracts

of immunological abnormalities in CFIDS. Three years ago I overheard

a

doctor joking to another about an attractive lady with CFS and how it

would be easy to get her in bed because that's where she likes to be.

When the 2nd doctor asked about symptoms, the first said " There's

nothing wrong with her, she just has chronic EBV " .) I wish there was a

website where everyone could list these experiences so you could

click

on a dr.s name and find out what to expect.

[Guest guest]

The trouble with the bad doc list is that I have had some real bad

experiences with some docs but there are also some things that I learned

from them too.

[Guest guest]

Some of our imparting knowledge can be taken by some as medical advice and

it can get complicated. There are a small number of holistic doctors who can

work on these sometimes more difficult situations. When I mention it I

usually gave the website and telephone # of the American College for

Advancement in Medicine(ACAM), whose members are more likely to be familiar

with some of these alternative medical treatments that appear so foreign to

most doctors.

for anyone interested: website: www.acam.org tel.# 1-800-532-3688

You also should realize that the FDA has received $10 million dollars to

spend monitoring us and the on line pharmacies. They are looking for reasons

to stop us! Don't give it on a silver platter.

Arnold Gore

Consumers Health Freedom Coalition

Doctors

> This is just an observation. I see the admonition in reading things on

the

> lists that are dealing with Alternative possibilities that we should

always

> check with a professional health care person, Doctor or whatever, before

> undertaking any alternative treatment.

>

> If we really meant that, we would fold up and quit because no one wants to

> be laughed at and if we listened to the doctors, particularly connected

with

> cancer, there would be no point in even thinking of anything Alternative.

>

> They will give advice when they know nothing at all about the

Alternatives.

>

> Cliff

>

>

>

> Get HUGE info at http://www.cures for cancer.ws, and post your own links there.

Unsubscribe by sending email to cures for cancer-unsubscribeegroups or by

visiting http://www.bobhurt.com/subunsub.mv

>

[Guest guest]

cliff, it is stated to check with your doctor first in order to protect the

person giving the advice. Because that's all we can call it, advice or a

suggestion. Otherwise one can be acused of practicing medicine without a

license. Even if the person giving the advice is a doctor they do not want

to form a doctor-patient relationship even if it is only implied. If they do

they can be held resposible for the results of taking the advice even by a

third party on a witch hunt.

[Guest guest]

Judy,

is on 40 mg of Celexa and after reading other posts, I feel she

could safely go up to 60 mg. I quite like my pediatrician. She has

been very helpful, actually, calling me just to see how it is going, but

at the same time admitting that I probably do know more about OCD than

she does. She has been very valiant in her efforts to get us suitable

help, but just because she is an MD does not mean she can instantly plug

us into all the right places. I respect her for telling me what her

limitations are and I know she is trying hard to be as helpful as she

knows how to be. She is quite happy to learn from my experiences as well

and I appreciate her candor in telling me she does not know everything.

The psychiatrist I am not so sure about. She seems very pleasant and

all, but she does not seem to consider that is her patient,

continuing to bounce us back to the pediatrician and psychologist.

I remain optimistic for the most part, as reading all the posts on this

list, I realize that eventually we will arrive at the correct

combination of meds and professionals and even if it is not perfect,

time is marching on and life is on a continuum, with change occurring

daily, some good, some not so good, but always with something new to

learn.

nne

[Guest guest]

Same here we see ped and she refers us out as needed. nettie

[Guest guest]

sees the pediatrician (same one as the rest of the bunch), who

follows her routine care. She has been referred out to opthamology (who

we continue to see, as wears glasses), ped. GI to rule out

Celiac disease (2 visits and we're done with him), ped. ENT (ongoing,

with ear tubes in, T & A out, etc), and audiology a couple times per

year. There have been others over the years, but this is her current

medical situation (darn good, I think!).

I think it is important that the pediatrician you see is aware of the

current health recommendations for kids with DS.... I always print them

out from the ds-health website and bring in a check-list at her yearly

check-up :-) I have also brought in information about new blood

tests, etc. Also, if YOU think your child needs to see a specialist, by

all means push it with the ped......you know your child best! It may be

nothing, but better safe than sorry.

, mom to (7), (5 DS), and (3)

[Guest guest]

In a message dated 6/19/03 10:27:10 PM Eastern Daylight Time,

writes:

> Do you all take your kids to just a basic pediatrician or do they see a

> specialist for all medical needs?

Sheila's general pediatrician happens to also be a pediatric developmental

specialist, but he is all of my girls regular pedi. He refers her out to a pedi

cardiologist, endocrinologist, and hematologist.

nancy

[Guest guest]

My son go to a pediatrician along with my other two children for the

routine physicals and anytime they get ill. If specialist are needed we get

a referral for that. My son DS, also goes to Kennedy Krieger DS clinic once

a year for a physical and to see how he is progressing.

>From: NEHolroyd@...

>

>Subject: Re: doctors

>Date: Fri, 20 Jun 2003 14:42:27 EDT

>

>In a message dated 6/19/03 10:27:10 PM Eastern Daylight Time,

> writes:

>

>

> > Do you all take your kids to just a basic pediatrician or do they see a

> > specialist for all medical needs?

>

>Sheila's general pediatrician happens to also be a pediatric developmental

>specialist, but he is all of my girls regular pedi. He refers her out to a

>pedi

>cardiologist, endocrinologist, and hematologist.

>

>nancy

>

>

>

[Guest guest]

Alison - her lack of NK cells is a t-cell disorder with her immune system. The

IV therapy would work to replace b-cells (IgG specifically). Have they tested

any of her other t-cell function? Have you thought of a second opinion? how

was her IgG function? The term for low IgG is HYPOgammaglobulinemia.

Ursula - Macey's mom (8,CVID)

[Guest guest]

In a message dated 11/17/2003 6:33:37 AM Central Standard Time,

alisonemails@... writes:

> gastrointestinal sensitivies, so much that we have put

> her on the specific carbohydrate diet which has

> cleared up her stools .

Alison:

Congratulations on figuring the dietary stuff out, that's really hard to do.

Both my daughters are intolerant or allergic to dairy only, and now that I

know the signs I look back at the months of diarrhea, rashes, reflux and eczema

#1 had and cannot believe the peds didn't figure it out for us. Oh well.

Keep in mind that being diagnosed so young means you have hope that she might

outgrow part or all of the disorder. Because our daughter had multiple

deficits, including functional ones (trouble making antibodies), we were told

she

would NOT outgrow her disorder. No way.

One by one each deficit has disappeared, now we're waiting and praying about

the last one (that we know about, of course!). The immuno was suprised when

's " absent " IgA suddenly appeared (age 3 I think?) and then was " normal " by

age 4. I just thanked God!!!

It's a long road, but maybe look to us for hope. Our first tests were at

seven months old, diagnosis at one year. We've been through varying degrees of

isolation (doctor mandated), and she was not allowed to play with groups of

children until she was 2-1/2. We had a couple lonely, long winters here, Mommy

and

!!!!!!!!!! I thought she'd never have any semblance of normalcy in her

life, it was heartbreaking. Now at age 4-3/4, she's in PRESCHOOL!!!!! A place we

never thought she could go. From age six months to three yrs or so, she was

in a limbo where she wasn't sick enough to qualify for IVIG (her immuno's

choice) and wasn't well enough to have any kind of normal life or social

opportunities (we missed a lot of family holidays or dinners because somebody

was sick).

Immuno said she should never go to preschool and should not start

Kindergarten " early " . Well, we decided to give it a try since she's been doing

so well

and it has been better than we expected!! The first couple weeks were rough,

illness-wise, and I think she misses more than the average kid, but she loves it

and so far it hasn't been that bad at all. It's only three days a week for two

hours, but boy is MOMMY over the moon about having that time to get stuff

done!

Good luck --

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4-1/2,

GERD, dairy intolerant -- currently has polysaccharide antibody def, previously

had transient IgG, IgA, t-cell & other defs)

[Guest guest]

from Dale, Mom to Katy, CVID, age 19

Are there any pediatric specialists in the NY/ NJ

metropolitan area that specialize in immunity

disorder? We want to be sure that we're not missing

anyting here. thanks!

Alison -- I believe Mt. Sinai is considered one of the big research centers!

All - I highly recommend that each one of you (in the US) contact the

Immune Deficiency Foundation office (IDF) at 1-800-296-4433 to get a

list of doctors available in your area. Also ask for all their

educational material and ask to be put on their mailing list for their

newsletters. It's very important that you get all the immune problems

diagnosed before you start IVIG -- or they have to stop IVIG for 3

months in order to do them. That's because IVIG replaces the IgG that

is missing with other people's antibodies so the tests turn out useless

information if they test with IVIG.

In His service,

Dale