info needed

[Guest guest]

Pam, there are Social Security benefit conultants that will work with you to

get services for your son. Just do a search of your yellow pages or on the

internet. Now, the do charge. Their fee is a percentage of what yor son will

receive. I think that there is no charge unless Social Security approves te

claim. y siggestion is to get started now because it could take months. Also

go back to this group home page and search the archives for old messages.

Good Luck,

In a message dated 2/14/2004 3:52:39 PM Pacific Standard Time,

fabricswap@... writes:

My son will be an adult soon. Will he then qualify for SSI or food

stamps? He will still live at home. He doesn't qualify for any

program now due to our income? ( My husband's a teacher, but our

income is too high.)

Thanks.

PAm

Unlocking Autism

www.UnlockingAutism.org

Autism-Awareness-Action

Worldwide internet group for parents who have a

child with AUTISM.

SeekingJoyinDisability - Prayer support for those touched by Disability:

SeekingJoyinDisability/

[Guest guest]

You don't need an advocate to get SSI benefits unless you run into

problems. All you have to do is call the SS office and apply! It is

based SOLELY on the child's income once they reach 18. Even though I

had a diagnosis, the SS office insisted on someone they hired to

evaluate my daughter AGAIN - grrrr!! Your child will also get

Medicaid. My daughter is now 21, and I wish I had known to do this

when she first turned 18, but she has been getting SSI for a couple

of years now. Also, be sure to get guardianship establised. It was

an easy thing to do in our county.

Blessings

Connie

> My son will be an adult soon. Will he then qualify for SSI or food

> stamps? He will still live at home. He doesn't qualify for any

> program now due to our income? ( My husband's a teacher, but our

> income is too high.)

> Thanks.

> PAm

[Guest guest]

I got into this discussion late, but at the Inclusion Works conference in Austin

last week, there was discussion about Benefit Planners that can help with Social

Security. There are 8 centers in Texas with Benefit Planners, and you can call

(800) 772-1213 and ask for the BPAO office closest to you.

Donna

[Guest guest]

Marilyn, where are you moving to? Feel free to contact me off list.

m_bernstein@...

~

info needed

Hello,

I am moving to GA in Nov. I have a 14 yr. old son with moderate Autism who is non-verbal. Can someone please tell me about the medical card he will be on and about respite in your state. I would also be interested in knowing about residential schools. Anything you tell me will be a help. Thank you.

Marilyn Pyles

mother to Neil

for MobileTake with you! Check email on your mobile phone.

[Guest guest]

There are several that have parents who

are detoxifying their children. They share info and

offere support. my favorite is " chelatingkids2 " . Go

to .

susan

--- LFMleczko@... wrote:

> hello.. is there a support group online.. that talks

> about the detoxing..

> the protocol... recommended natural supplements.. to

> buy.. ect... so I can get

> started helping my son? thanks.. Lia

>

__________________________________________________

[Guest guest]

Also homeopathy, HSNC.org . Many of us are seeing huge results with this approach. Take Care Trina __________________________________________________

[Guest guest]

Hi Lia,

I would recommend

the chelating kids 2 group. Also, I like the

group.

Pamela

" Courage is doing

what you're afraid to do. There can be no courage unless you're

scared. "

Eddie Rickenbacker,

top US

fighter ace, WWI

From: EOHarm [mailto:EOHarm ] On Behalf Of LFMleczko@...

Sent: Monday, December 18, 2006

7:42 AM

EOHarm

Subject: info needed

hello.. is there a support group online..

that talks about the detoxing.. the protocol... recommended

natural supplements.. to buy..

ect... so I can get started helping my son? thanks.. Lia

[Guest guest]

thanks.. is this a group? lia

[Guest guest]

thanks to all who answered me... Lia

[Guest guest]

I would also recommend abmd group, stands for autism biomedical discussion

Debi

[Guest guest]

Hi Lee

I feel for you. I live in South Africa and we are with a very good paediatrician

there (the medical system is generally very good so long as you go private) and

our paediatrician was at a loss as to what could be wrong with our daughter

(even he stopped believing in monthly viruses after about 6 or 7 months). He

referred us to a paediatric rheumatologist. Please try and find one of these in

hungary (if your doctor can't refer you there should be a medical register of

some sort that you could find one yourself) and he/she should be vaguely

familiar with periodic fever syndromes and autoinflammatory diseases even if

they dont' actually have other children with the syndromes in their care. At

least this is what I found to be true in South Africa and although our

paediatric rheumatologist is new to these diseases, she doesn't think we're

crazy and she's running the right tests to find out exactly which one emma has.

I hope this helps

Kind regards

Inga

INFO NEEDED

HI EVERYONE

DOES ANYONE OUT THERE KNOW OF ANY DOCTORS IN HUNGARY WHO KNOW OF THIS

CONDITION? I WOULD APPRECIATE ANY INFORMATION THAT YOU CAN GIVE ME.

WHEN I MENTION IT TO DOCTORS HERE AS A POSSIBILITY I GET A BLANK LOOK

AND GET TOLD WITH A SMIRK THAT THEY HAVENT HEARD OF ANY SUCH THING.

THEN IF I MENTION GETTING INFORMATION OFF THE INTERNET THE EYES ROLL!

SO PLEASE IF ANY ONE CAN HELP ME SO THAT I CAN TRY TO EDUCATE THE

DOCTORS HERE TO THE EXISTENCE OF THESE CONDITIONS. MY CHILD ISNT THE

ONLY ONE HERE THAT I KNOW OF THERE ARE A FEW CHILDREN THAT ARE GOING

THROUGH THE SAME THING THAT I KNOW OF. THE DOCTORS DO ALL THE SAME

TESTS OVER AND OVER AND EVENTUALLY THEY TELL YOU THAT ITS STRESS AND

NERVES AND THAT THEY WILL GET OVER IT. IN THE MEAN TIME THERE IS NO

MEDICATION OR HELP GIVEN OTHER THAN ANTIBIOTICS OR THE STANDARD FEVER

MEDICATION. THANK YOU

LEE

___________________________________________________________

To help you stay safe and secure online, we've developed the all new

Security Centre. http://uk.security.

[Guest guest]

Well, I know how you feel, we are military and each base we go to have no clue

about it. We are stationed in Japan currently and military doctors are the

worse! The Japanese are very interested in learning about it, but the military

they give you these weird looks like you are stupid or something. And tell us

there is no such thing! My wife remembers reading something about a doctor in

Hungary who knew about or information try this link

http://answers.google.com/answers/threadview?id=577699

Military doctors don't have a clue about , currently last year the doctors

here sent me home early from deployment saying it was emergency that my daughter

didn't have , but had JRA. I was in Iraq and being sent home, for nothing.

We have 5 volume of medical records stating she doesn't have JRA or any

Rheumatiod disorders. Now I got orders to deploy again to Iraq area and after

2yrs of my wife trying to get a referral to ENT always being denied. In may she

was seen, no one ever knew her tonsils were taken out, no one ever told us her

medical records were lost in the states. Here I am pissed off with them, and the

ENT didn't take my daughter serious. In the states her lymph node was 3X3cm and

was to get FNA done but we couldn't get it done prior to leaving the states.

After 2yrs of trying everything to see ENT, she was seen in May 2007, he ordered

a CT scan to prove to my wife nothing was wrong. Now he called and wants to do a

FNA sometime down the road. I am getting deployed in a few months, they are

going to pull this again and say its an emergency. Here they don't know what

is, she was diagnosed with it, 2002/2003, tonsills came out fevers slowed

down. She still gets the symptoms, but the fevers aren't as high as they use to

be and maybe have 4 fevers per year or less. We never gave her steriods.

Chris

@...: ingabothner@...: Fri, 22 Jun 2007

12:08:28 +0000Subject: Re: INFO NEEDED

Hi LeeI feel for you. I live in South Africa and we are with a very good

paediatrician there (the medical system is generally very good so long as you go

private) and our paediatrician was at a loss as to what could be wrong with our

daughter (even he stopped believing in monthly viruses after about 6 or 7

months). He referred us to a paediatric rheumatologist. Please try and find one

of these in hungary (if your doctor can't refer you there should be a medical

register of some sort that you could find one yourself) and he/she should be

vaguely familiar with periodic fever syndromes and autoinflammatory diseases

even if they dont' actually have other children with the syndromes in their

care. At least this is what I found to be true in South Africa and although our

paediatric rheumatologist is new to these diseases, she doesn't think we're

crazy and she's running the right tests to find out exactly which one emma has.I

hope this helpsKind regardsInga INFO NEEDEDHI EVERYONEDOES ANYONE OUT THERE KNOW OF

ANY DOCTORS IN HUNGARY WHO KNOW OF THIS CONDITION? I WOULD APPRECIATE ANY

INFORMATION THAT YOU CAN GIVE ME. WHEN I MENTION IT TO DOCTORS HERE AS A

POSSIBILITY I GET A BLANK LOOK AND GET TOLD WITH A SMIRK THAT THEY HAVENT HEARD

OF ANY SUCH THING. THEN IF I MENTION GETTING INFORMATION OFF THE INTERNET THE

EYES ROLL! SO PLEASE IF ANY ONE CAN HELP ME SO THAT I CAN TRY TO EDUCATE THE

DOCTORS HERE TO THE EXISTENCE OF THESE CONDITIONS. MY CHILD ISNT THE ONLY ONE

HERE THAT I KNOW OF THERE ARE A FEW CHILDREN THAT ARE GOING THROUGH THE SAME

THING THAT I KNOW OF. THE DOCTORS DO ALL THE SAME TESTS OVER AND OVER AND

EVENTUALLY THEY TELL YOU THAT ITS STRESS AND NERVES AND THAT THEY WILL GET OVER

IT. IN THE MEAN TIME THERE IS NO MEDICATION OR HELP GIVEN OTHER THAN ANTIBIOTICS

OR THE STANDARD FEVER MEDICATION. THANK YOU

LEE__________________________________________________________ To help you stay

safe and secure online, we've developed the all new Security Centre.

http://uk.security.[Non-text portions of this message have been

removed]

_________________________________________________________________

With Windows Live Hotmail, you can personalize your inbox with your favorite

color.

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[Guest guest]

HI INGA

THANK YOU FOR YOUR ANSWER. I CANT BELIEVE YOU SOUTH

AFRICAN. I AM ALSO A SOUTH AFRICAN AND LIVED THERE FOR

35 YRS! MY SON WAS BORN IN BENONI AND HAD HIS FIRST

FEVER AT 6 MTHS OF AGE. HE HAD THEM EVERYMONTH AND AS

WE WERENT ON A MEDICAL AID AT THAT TIME WE COULDNT

AFFORD TO DO ANYTHING ABOUT IT. WE THEN WENT TO

IRELAND WHERE THEY PUT IT DOWN TO NEW GERMS AND

INVIROMENT. I GIVE UP SOMETIMES AND THINK THAT MAYBE

WE WILL JUST HAVE TO ACCEPT THIS BUT ITS NOT ONLY FOR

OUR CHILDREN ITS FOR ALL THE CHILDREN TO COME THAT I

HAVE TO TRY AND GET THIS CONDITION KNOWN TO THE

MEDICAL WORLD HERE.

LEE

> Hi Lee

> I feel for you. I live in South Africa and we are

> with a very good paediatrician there (the medical

> system is generally very good so long as you go

> private) and our paediatrician was at a loss as to

> what could be wrong with our daughter (even he

> stopped believing in monthly viruses after about 6

> or 7 months). He referred us to a paediatric

> rheumatologist. Please try and find one of these in

> hungary (if your doctor can't refer you there should

> be a medical register of some sort that you could

> find one yourself) and he/she should be vaguely

> familiar with periodic fever syndromes and

> autoinflammatory diseases even if they dont'

> actually have other children with the syndromes in

> their care. At least this is what I found to be true

> in South Africa and although our paediatric

> rheumatologist is new to these diseases, she doesn't

> think we're crazy and she's running the right tests

> to find out exactly which one emma has.

> I hope this helps

> Kind regards

> Inga

>

>

> INFO NEEDED

>

> HI EVERYONE

> DOES ANYONE OUT THERE KNOW OF ANY DOCTORS IN HUNGARY

> WHO KNOW OF THIS

> CONDITION? I WOULD APPRECIATE ANY INFORMATION THAT

> YOU CAN GIVE ME.

> WHEN I MENTION IT TO DOCTORS HERE AS A POSSIBILITY I

> GET A BLANK LOOK

> AND GET TOLD WITH A SMIRK THAT THEY HAVENT HEARD OF

> ANY SUCH THING.

> THEN IF I MENTION GETTING INFORMATION OFF THE

> INTERNET THE EYES ROLL!

> SO PLEASE IF ANY ONE CAN HELP ME SO THAT I CAN TRY

> TO EDUCATE THE

> DOCTORS HERE TO THE EXISTENCE OF THESE CONDITIONS.

> MY CHILD ISNT THE

> ONLY ONE HERE THAT I KNOW OF THERE ARE A FEW

> CHILDREN THAT ARE GOING

> THROUGH THE SAME THING THAT I KNOW OF. THE DOCTORS

> DO ALL THE SAME

> TESTS OVER AND OVER AND EVENTUALLY THEY TELL YOU

> THAT ITS STRESS AND

> NERVES AND THAT THEY WILL GET OVER IT. IN THE MEAN

> TIME THERE IS NO

> MEDICATION OR HELP GIVEN OTHER THAN ANTIBIOTICS OR

> THE STANDARD FEVER

> MEDICATION. THANK YOU

> LEE

>

>

>

>

>

>

>

___________________________________________________________

>

> To help you stay safe and secure online, we've

> developed the all new Security Centre.

> http://uk.security.

>

> [Non-text portions of this message have been

> removed]

>

>

___________________________________________________________

is the world's favourite email. Don't settle for less, sign up for

your free account today

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[Guest guest]

HELLO CHRIS

THANK YOU FOR YOUR PROMPT REPLY. GOSH IT SEEMS LIKE

THIS IS A RATHER HUGE PROJECT I HAVE TAKEN ON NOW! ITS

REALLY FRUSTRATING WHEN I GET THOSE LOOKS AND IM

SCARED SOMETIMES THAT THE MEN IN WHITE COATS WILL COME

AND TAKE ME AWAY! THANK YOU FOR THE LINK I HAVE

STARTED TO MAKE PHONE CALLS ALREADY AND WILL GET BACK

TO THE GROUP ON WHAT IF ANY PROGRESS I MAKE.

LEE

--- Cold Noodles <cold_noodles4u@...> wrote:

>

> Well, I know how you feel, we are military and each

> base we go to have no clue about it. We are

> stationed in Japan currently and military doctors

> are the worse! The Japanese are very interested in

> learning about it, but the military they give you

> these weird looks like you are stupid or something.

> And tell us there is no such thing! My wife

> remembers reading something about a doctor in

> Hungary who knew about or information try this

> link

>

http://answers.google.com/answers/threadview?id=577699

>

> Military doctors don't have a clue about ,

> currently last year the doctors here sent me home

> early from deployment saying it was emergency that

> my daughter didn't have , but had JRA. I was in

> Iraq and being sent home, for nothing. We have 5

> volume of medical records stating she doesn't have

> JRA or any Rheumatiod disorders. Now I got orders to

> deploy again to Iraq area and after 2yrs of my wife

> trying to get a referral to ENT always being denied.

> In may she was seen, no one ever knew her tonsils

> were taken out, no one ever told us her medical

> records were lost in the states. Here I am pissed

> off with them, and the ENT didn't take my daughter

> serious. In the states her lymph node was 3X3cm and

> was to get FNA done but we couldn't get it done

> prior to leaving the states. After 2yrs of trying

> everything to see ENT, she was seen in May 2007, he

> ordered a CT scan to prove to my wife nothing was

> wrong. Now he called and wants to do a FNA sometime

> down the road. I am getting deployed in a few

> months, they are going to pull this again and say

> its an emergency. Here they don't know what

> is, she was diagnosed with it, 2002/2003, tonsills

> came out fevers slowed down. She still gets the

> symptoms, but the fevers aren't as high as they use

> to be and maybe have 4 fevers per year or less. We

> never gave her steriods.

>

> Chris

>

>

> @...:

> ingabothner@...: Fri, 22 Jun 2007

> 12:08:28 +0000Subject: Re: INFO NEEDED

>

>

>

>

> Hi LeeI feel for you. I live in South Africa and we

> are with a very good paediatrician there (the

> medical system is generally very good so long as you

> go private) and our paediatrician was at a loss as

> to what could be wrong with our daughter (even he

> stopped believing in monthly viruses after about 6

> or 7 months). He referred us to a paediatric

> rheumatologist. Please try and find one of these in

> hungary (if your doctor can't refer you there should

> be a medical register of some sort that you could

> find one yourself) and he/she should be vaguely

> familiar with periodic fever syndromes and

> autoinflammatory diseases even if they dont'

> actually have other children with the syndromes in

> their care. At least this is what I found to be true

> in South Africa and although our paediatric

> rheumatologist is new to these diseases, she doesn't

> think we're crazy and she's running the right tests

> to find out exactly which one emma has.I hope this

> helpsKind regardsInga INFO NEEDEDHI

> EVERYONEDOES ANYONE OUT THERE KNOW OF ANY DOCTORS IN

> HUNGARY WHO KNOW OF THIS CONDITION? I WOULD

> APPRECIATE ANY INFORMATION THAT YOU CAN GIVE ME.

> WHEN I MENTION IT TO DOCTORS HERE AS A POSSIBILITY I

> GET A BLANK LOOK AND GET TOLD WITH A SMIRK THAT THEY

> HAVENT HEARD OF ANY SUCH THING. THEN IF I MENTION

> GETTING INFORMATION OFF THE INTERNET THE EYES ROLL!

> SO PLEASE IF ANY ONE CAN HELP ME SO THAT I CAN TRY

> TO EDUCATE THE DOCTORS HERE TO THE EXISTENCE OF

> THESE CONDITIONS. MY CHILD ISNT THE ONLY ONE HERE

> THAT I KNOW OF THERE ARE A FEW CHILDREN THAT ARE

> GOING THROUGH THE SAME THING THAT I KNOW OF. THE

> DOCTORS DO ALL THE SAME TESTS OVER AND OVER AND

> EVENTUALLY THEY TELL YOU THAT ITS STRESS AND NERVES

> AND THAT THEY WILL GET OVER IT. IN THE MEAN TIME

> THERE IS NO MEDICATION OR HELP GIVEN OTHER THAN

> ANTIBIOTICS OR THE STANDARD FEVER MEDICATION. THANK

> YOU

>

LEE__________________________________________________________

> To help you stay safe and secure online, we've

> developed the all new Security Centre.

> http://uk.security.[Non-text portions of

> this message have been removed]

>

>

>

_________________________________________________________________

> With Windows Live Hotmail, you can personalize your

> inbox with your favorite color.

>

www.windowslive-hotmail.com/learnmore/personalize.html?locale=en-us & ocid=TXT_TAG\

LM_HMWL_reten_addcolor_0607

>

> [Non-text portions of this message have been

> removed]

>

>

___________________________________________________________

Answers - Got a question? Someone out there knows the answer. Try it

now.

http://uk.answers./

[Guest guest]

That must be so frustrating for you. Have you tried printing out any

information written by doctors and taking it to them to read? I

would print it out along with our posts about our children who have

been diagnosed with this illness. The doctor at children's hospital

gave me some hand outs on which I have also seen on line. I

hope everything works out for you and your child.

.

>

> HI EVERYONE

> DOES ANYONE OUT THERE KNOW OF ANY DOCTORS IN HUNGARY WHO KNOW OF

THIS

> CONDITION? I WOULD APPRECIATE ANY INFORMATION THAT YOU CAN GIVE

ME.

> WHEN I MENTION IT TO DOCTORS HERE AS A POSSIBILITY I GET A BLANK

LOOK

> AND GET TOLD WITH A SMIRK THAT THEY HAVENT HEARD OF ANY SUCH

THING.

> THEN IF I MENTION GETTING INFORMATION OFF THE INTERNET THE EYES

ROLL!

> SO PLEASE IF ANY ONE CAN HELP ME SO THAT I CAN TRY TO EDUCATE THE

> DOCTORS HERE TO THE EXISTENCE OF THESE CONDITIONS. MY CHILD ISNT

THE

> ONLY ONE HERE THAT I KNOW OF THERE ARE A FEW CHILDREN THAT ARE

GOING

> THROUGH THE SAME THING THAT I KNOW OF. THE DOCTORS DO ALL THE SAME

> TESTS OVER AND OVER AND EVENTUALLY THEY TELL YOU THAT ITS STRESS

AND

> NERVES AND THAT THEY WILL GET OVER IT. IN THE MEAN TIME THERE IS

NO

> MEDICATION OR HELP GIVEN OTHER THAN ANTIBIOTICS OR THE STANDARD

FEVER

> MEDICATION. THANK YOU

> LEE

>

[Guest guest]

Have you tried this link -

http://hungary.usembassy.gov/uploads/images/ms4ydPNthx7wSWHzit0OvQ/doctors_sep06\

..pdf

Here on a military base they actually almost took my wife away, they thought she

was crazy everytime she would tell the doctors our daughter has syndrome.

They called family advocacy (mental health) on my wife, no one would listen to

her. My wife wrote a 9 page complaint about the pediatrics lack of services and

care. Changed our kids care to family practice and they never heard of the

syndrome either but want to see her in an episode, or when she has burning eyes,

or swollen and painfull lymph nodes, or even if she does get a fever. Our

daughter had her tonsils out and the fevers slowed down about 4 times a year or

less, not as high. We never did the steriod treatment.

Chris

@...: luvlee_07@...: Fri, 22 Jun 2007

15:15:05 +0100Subject: RE: INFO NEEDED

HELLO CHRISTHANK YOU FOR YOUR PROMPT REPLY. GOSH IT SEEMS LIKETHIS IS A RATHER

HUGE PROJECT I HAVE TAKEN ON NOW! ITSREALLY FRUSTRATING WHEN I GET THOSE LOOKS

AND IMSCARED SOMETIMES THAT THE MEN IN WHITE COATS WILL COMEAND TAKE ME AWAY!

THANK YOU FOR THE LINK I HAVESTARTED TO MAKE PHONE CALLS ALREADY AND WILL GET

BACKTO THE GROUP ON WHAT IF ANY PROGRESS I MAKE.LEE--- Cold Noodles

<cold_noodles4u@...> wrote:> > Well, I know how you feel, we are

military and each> base we go to have no clue about it. We are> stationed in

Japan currently and military doctors> are the worse! The Japanese are very

interested in> learning about it, but the military they give you> these weird

looks like you are stupid or something.> And tell us there is no such thing! My

wife> remembers reading something about a doctor in> Hungary who knew about

or information try this>

link>http://answers.google.com/answers/threadview?id=577699> > Military doctors

don't have a clue about ,> currently last year the doctors here sent me

home> early from deployment saying it was emergency that> my daughter didn't

have , but had JRA. I was in> Iraq and being sent home, for nothing. We

have 5> volume of medical records stating she doesn't have> JRA or any

Rheumatiod disorders. Now I got orders to> deploy again to Iraq area and after

2yrs of my wife> trying to get a referral to ENT always being denied.> In may

she was seen, no one ever knew her tonsils> were taken out, no one ever told us

her medical> records were lost in the states. Here I am pissed> off with them,

and the ENT didn't take my daughter> serious. In the states her lymph node was

3X3cm and> was to get FNA done but we couldn't get it done> prior to leaving the

states. After 2yrs of trying> everything to see ENT, she was seen in May 2007,

he> ordered a CT scan to prove to my wife nothing was> wrong. Now he called and

wants to do a FNA sometime> down the road. I am getting deployed in a few>

months, they are going to pull this again and say> its an emergency. Here they

don't know what > is, she was diagnosed with it, 2002/2003, tonsills> came

out fevers slowed down. She still gets the> symptoms, but the fevers aren't as

high as they use> to be and maybe have 4 fevers per year or less. We> never gave

her steriods.> > > > > @...:>

ingabothner@...: Fri, 22 Jun 2007> 12:08:28 +0000Subject: Re:

INFO NEEDED> > > > > Hi LeeI feel for you. I live in South Africa and

we> are with a very good paediatrician there (the> medical system is generally

very good so long as you> go private) and our paediatrician was at a loss as> to

what could be wrong with our daughter (even he> stopped believing in monthly

viruses after about 6> or 7 months). He referred us to a paediatric>

rheumatologist. Please try and find one of these in> hungary (if your doctor

can't refer you there should> be a medical register of some sort that you could>

find one yourself) and he/she should be vaguely> familiar with periodic fever

syndromes and> autoinflammatory diseases even if they dont'> actually have other

children with the syndromes in> their care. At least this is what I found to be

true> in South Africa and although our paediatric> rheumatologist is new to

these diseases, she doesn't> think we're crazy and she's running the right

tests> to find out exactly which one emma has.I hope this> helpsKind

regardsInga

INFO NEEDEDHI> EVERYONEDOES ANYONE OUT THERE KNOW OF ANY DOCTORS IN> HUNGARY WHO

KNOW OF THIS CONDITION? I WOULD> APPRECIATE ANY INFORMATION THAT YOU CAN GIVE

ME.> WHEN I MENTION IT TO DOCTORS HERE AS A POSSIBILITY I> GET A BLANK LOOK AND

GET TOLD WITH A SMIRK THAT THEY> HAVENT HEARD OF ANY SUCH THING. THEN IF I

MENTION> GETTING INFORMATION OFF THE INTERNET THE EYES ROLL!> SO PLEASE IF ANY

ONE CAN HELP ME SO THAT I CAN TRY> TO EDUCATE THE DOCTORS HERE TO THE EXISTENCE

OF> THESE CONDITIONS. MY CHILD ISNT THE ONLY ONE HERE> THAT I KNOW OF THERE ARE

A FEW CHILDREN THAT ARE> GOING THROUGH THE SAME THING THAT I KNOW OF. THE>

DOCTORS DO ALL THE SAME TESTS OVER AND OVER AND> EVENTUALLY THEY TELL YOU THAT

ITS STRESS AND NERVES> AND THAT THEY WILL GET OVER IT. IN THE MEAN TIME> THERE

IS NO MEDICATION OR HELP GIVEN OTHER THAN> ANTIBIOTICS OR THE STANDARD FEVER

MEDICATION. THANK>

YOU>LEE__________________________________________________________> To help you

stay safe and secure online, we've> developed the all new Security

Centre.> http://uk.security.[Non-text portions of> this message have

been removed] > > >__________________________________________________________>

With Windows Live Hotmail, you can personalize your> inbox with your favorite

color.>www.windowslive-hotmail.com/learnmore/personalize.html?locale=en-us & ocid=\

TXT_TAGLM_HMWL_reten_addcolor_0607> > [Non-text portions of this message have

been> removed]> >

__________________________________________________________ Answers - Got a

question? Someone out there knows the answer. Try

itnow.http://uk.answers./

_________________________________________________________________

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[Guest guest]

In a message dated 1/10/08 6:45:37 AM, gaznik111@... writes:

>

> I have pa and have been suffering from bad aching legs the last few nights.

> I have woke up thismorning and my legs and groin and stomach ache really bad.

> I am only in early stages of pa awaiting tumor removal and have not had many

> pa symptoms, i was thiking could it be low K thats causing this and should i

> possibly get a blood test done and see what my levels are,my K is usually

> around 3-4 .

>

>

>

That is a low K and most likely causing your problems. The measured K in

your blood can be falsely rasied by many things see out files so be sure your BP

is being drawn and handled properly to get the most accurate K.

Do we have your story yet?

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

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

Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

I have pa and have been suffering from bad aching legs the last few nights. I

have woke up thismorning and my legs and groin and stomach ache really bad. I am

only in early stages of pa awaiting tumor removal and have not had many pa

symptoms, i was thiking could it be low K thats causing this and should i

possibly get a blood test done and see what my levels are,my K is usually around

3-4 .

__________________________________________________________

Sent from - a smarter inbox http://uk.mail.

[Guest guest]

I am a member of .Mac which has a lot of features too--I am told but have not

tried them. Time as you know. We are currently working on a Webex program

to teach folks live how to take BP and update skills. Could also use this

as a video conferencing site for all who wanted to come. Just learning it

now.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

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

Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

I think my wife owns several domain names thru a web hosting site and will

see what I can find out before anyone jumps in.

Thanks

I am going home from rehab today after 3 weeks post tearing my quadiceps

tendon. In a straight leg brace which will be in for another month at least.

Also on coumadin for 2 more months as had blood clots in my injured leg.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

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

Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

I don't like Dr. Grim's referral to this group in his paper. It would

look so much better to have a real website. I would like to see a real site

and would donate considerably to get it going, including buying a domain

name for three years or so. I can do simple websites and host them for free

but I can't do anything that requires any learning right now, like chat,

listserve, etc. I can do graphics and make things look pretty (or

sophisticated). I would think even a fairly simple website would be better

than reference to a group in a published paper. There could still be

a link to join this group. All the fabulous " files " of this group

could be put on the site, except for anything that would violate copyright.

I have a website business I've been trying to get going since 2002. I have

it nearly set up, but my intermittent illness keeps me from doing anything

on a sustained basis. This is one of my businesses:

http://www.sewmagicmoments.com I had this " almost " going in 2006 and then

another episode hit. Our " real " business is run through

http://www.wyosip.com I do weekly rate updates and make other simple

changes as needed. The passworded client area is run through an outside

third party. With that simple website and the bank's backing, we have over

$200 million under management. I'm also the webmistress for my women's

political group but will not reveal it so as to minimize the tar and

feathering.

If there is anyway I could help or contribute to this effort, I am totally

willing, both with time and $$$. Someone just say " go " and I'll go buy a

domain name and set up free hosting. We could have something up and running

in a week.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Dave

Yes, there are many blogoshpherical server operators willing to let us

in for free. For a small fee, they'd even set up that registry you keep

mentioning. More personal. hosting is cheaper and better than ever,

and one can make a site that " looks and feels " great with a little

help. Had I not been flattened by sciatica and back surgery, I'd have

pursued my pal Jerry (jerrymerrill.com) the programmer to point us in

the right direction already. is too flighty - they can delete a

group on grounds you may never discover. Anybody with the DMCA formula

can challenge copyright with them and poof.

You could have everything has - chat, e-mail listserve, graphics

and players, etc. RSS. But you can make it so much easier to navigate,

and link up to other places.

Now I'm fighting post-op physio, and a spiro to inspra change, but did

build, run and sell a website business 2000- 2006. It isn't that hard

with tech help. I am up at the university in 2 communication grad

seminars, so have easy access to the tech building too. . .someone could

probably get a master's thesis out of this. . .or at least a BS capstone.

Dave

lowerbp2@... <mailto:lowerbp2%40aol.com> wrote:

>

> Dave: if we set up a real web site/blog site how would it differ from

> what we

> have now. Seems to me we would have a more professional looking site.

>

> Others thoughts?

>

> May your pressure be low!

>

> Clarence E. Grim, BS, MS, MD

> Senior Consultant to Shared Care Research and Consulting, Inc.

> (sharedcareinc.com)

> Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

> Clinical Professor of Nursing, Univ. of WI, Milwaukee

>

> Specializing in Difficult to Control High Blood Pressure

> and the Physiology and History of Survival During

> Hard Times and Heart Disease today.

>

> **************

>

[Guest guest]

Wow, Dr. Grim. Here you are trying to get your body repaired and you still

have had time for us. My best to you!

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of lowerbp2@...

I think my wife owns several domain names thru a web hosting site and will

see what I can find out before anyone jumps in.

Thanks

I am going home from rehab today after 3 weeks post tearing my quadiceps

tendon. In a straight leg brace which will be in for another month at least.

Also on coumadin for 2 more months as had blood clots in my injured leg.

[Guest guest]

Val,

That's very nice of you to offer.

Do you (sorry if I've asked you before, Val) or does anyone else have

web-based database user interface coding experince for the hypertension

database that we'd want to host on the site? Dr. Grim and I have an initial

cut of the data model for the HTN database, but nobody yet to develop the

user interface. This will allow us to capture our stories in a way that has

the potential of providing considerably more comprehensive insights into the

progression, mis-diagnoses, various complications, remediations, and

long-term prognosis for hyperaldosterone disorders.

Thanks,

Jeff

On Jan 11, 2008 9:19 AM, Valarie <val@...> wrote:

> I don't like Dr. Grim's referral to this group in his paper. It

> would

> look so much better to have a real website. I would like to see a real

> site

> and would donate considerably to get it going, including buying a domain

> name for three years or so. I can do simple websites and host them for

> free

> but I can't do anything that requires any learning right now, like chat,

> listserve, etc. I can do graphics and make things look pretty (or

> sophisticated). I would think even a fairly simple website would be better

> than reference to a group in a published paper. There could still be

> a link to join this group. All the fabulous " files " of this group

> could be put on the site, except for anything that would violate

> copyright.

>

> I have a website business I've been trying to get going since 2002. I have

> it nearly set up, but my intermittent illness keeps me from doing anything

> on a sustained basis. This is one of my businesses:

> http://www.sewmagicmoments.com I had this " almost " going in 2006 and then

> another episode hit. Our " real " business is run through

> http://www.wyosip.com I do weekly rate updates and make other simple

> changes as needed. The passworded client area is run through an outside

> third party. With that simple website and the bank's backing, we have over

> $200 million under management. I'm also the webmistress for my women's

> political group but will not reveal it so as to minimize the tar and

> feathering.

>

> If there is anyway I could help or contribute to this effort, I am totally

> willing, both with time and $$$. Someone just say " go " and I'll go buy a

> domain name and set up free hosting. We could have something up and

> running

> in a week.

>

> Val

>

> From: hyperaldosteronism <hyperaldosteronism%40>

>

[mailto:hyperaldosteronism <hyperaldosteronism%40>\

]

> On Behalf Of Dave

>

>

> Yes, there are many blogoshpherical server operators willing to let us

> in for free. For a small fee, they'd even set up that registry you keep

> mentioning. More personal. hosting is cheaper and better than ever,

> and one can make a site that " looks and feels " great with a little

> help. Had I not been flattened by sciatica and back surgery, I'd have

> pursued my pal Jerry (jerrymerrill.com) the programmer to point us in

> the right direction already. is too flighty - they can delete a

> group on grounds you may never discover. Anybody with the DMCA formula

> can challenge copyright with them and poof.

>

> You could have everything has - chat, e-mail listserve, graphics

> and players, etc. RSS. But you can make it so much easier to navigate,

> and link up to other places.

>

> Now I'm fighting post-op physio, and a spiro to inspra change, but did

> build, run and sell a website business 2000- 2006. It isn't that hard

> with tech help. I am up at the university in 2 communication grad

> seminars, so have easy access to the tech building too. . .someone could

> probably get a master's thesis out of this. . .or at least a BS capstone.

>

> Dave

>

> lowerbp2@... <lowerbp2%40aol.com> <mailto:lowerbp2%40aol.com> wrote:

> >

> > Dave: if we set up a real web site/blog site how would it differ from

> > what we

> > have now. Seems to me we would have a more professional looking site.

> >

> > Others thoughts?

> >

> > May your pressure be low!

> >

> > Clarence E. Grim, BS, MS, MD

> > Senior Consultant to Shared Care Research and Consulting, Inc.

> > (sharedcareinc.com)

> > Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

> > Clinical Professor of Nursing, Univ. of WI, Milwaukee

> >

> > Specializing in Difficult to Control High Blood Pressure

> > and the Physiology and History of Survival During

> > Hard Times and Heart Disease today.

> >

> > **************

> >

>

>

[Guest guest]

We already own ours.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

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

Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

No, I do not have that experience and I'm too dumb right now to try to learn

it.

I could post stories and/or take data and enter it into a database type

spreadsheet or other form, but I wouldn't have a clue how to have a user

type interface. From the looks of our files, even stories are few and far

between. I think it is critical to have a place where sick people can learn

from the many years of errors and mistakes with others.

Even if I put an initial site together, I'd want someone else here to have

passwords, etc. to take it over if necessary. I would be happy to

completely turn it over to a professional at a moment's notice.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Jeff Feinsmith

Val,

That's very nice of you to offer.

Do you (sorry if I've asked you before, Val) or does anyone else have

web-based database user interface coding experince for the hypertension

database that we'd want to host on the site? Dr. Grim and I have an initial

cut of the data model for the HTN database, but nobody yet to develop the

user interface. This will allow us to capture our stories in a way that has

the potential of providing considerably more comprehensive insights into the

progression, mis-diagnoses, various complications, remediations, and

long-term prognosis for hyperaldosterone disorders.