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Hi Sisanne

I sure hope that you have found the right Dr. and treatment. Keep us

updated. My dr. wants to increase the Prednisone and put me back on Imuran,

so I am very interested in what they decide for you. I'm interested anyway

not just because I relate to it. I really like reading your post and try to

keep up with everything going on.

Love you

Carolyn

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Hi ne,

"Went to see new dr in Atlanta. He is director of a hepatitis research group at Emory University. He seems to think that most of my recent problems are caused by the Prednisone."

*UGH* .... the evil *p* word...

"Anyway, he started "weaning" me off it, took about a gallon of blood, & I go back in 1 month."

Whoo Hoo - a proactive doctor! Lets hope he knows his shit!!

"He's going to start me on Imuran. (My GP told me "nobody uses that drug anymore")"

Well Imuran is the one drug I can take and lots of people use it... looks like your GP is going on the slapping list. Imuran takes 3 months before it builds up to an active dose in your body. So you might not notice the effects for a while. It is not a fast acting drug like prednisone. It took me about 6 months on it before it made a significant improvement to my blood results. The side effects however are that you have to have a blood test every 6 weeks to check for immune changes, as it can cause immune system cancer. My immunologist said that it is very unlikely as you need to be on mega high doses such as for a transplant for it to cause cancer. But you have to have the blood tests every 6 weeks anyhow. Also - it can make you feel like you have the flu. So although clinically my results are better and I know that is better for my body - I dont feel any better for being on it yet cause I have a constant fatigue and flu like symptoms. Also, like prednisone, your immune resistance is lowered so any infections , viruses etc are likely to flair when you first start it. Just a word of warning there although I am sure you already know this. I'm on 100mg of it, and it has made a huge difference, even to my liver function as my form of sarcoidosis affected my liver. So hopefully it will help with your AI hepititis.

"I got this dr's name from a lady on another list that I belong to. She also has autoimmune hepatitis & this dr has really helped her. It sure looks promising."

I'm so pleased for you ne, there is nothing better then knowing that you are in the hands of somone competant! Makes all that serching for a good doctor worthwhile. I wish you all the best, but you know that *hug*

Love Aisha.

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Helen- yes my right leg is weeping still. He said " one thing at a time. "

ne

----Original Message Follows----

From: " Helen " <angelbear1129@...>

Reply-egroups

egroups

Subject: RE: new dr

Date: Sun, 3 Sep 2000 2:57:10 -0400

I'm glad you like your new Dr. and he's doing for you. Hope and Pray

all turns out good for you. Are your legs still weeping? Did he have

anything to say about them?

Hugs

Helen

> Hi all,

> Went to see new Dr in Atlanta. He is director of a hepatitis research

group

> at Emory University. He seems to think that most of my recent problems

are

> caused by the Prednisone. (Every time I go to my GP with new symptoms,

she

> increases it. I'm now on 60 mgm/day!) Anyway, he started " weaning " me

off

> it, took about a gallon of blood, & I go back in 1 month. He's going to

> start me on Imuran. (My GP told me " nobody uses that drug anymore " ) I got

> this dr's name from a lady on another list that I belong to. She also has

> autoimmune hepatitis & this dr has really helped her. It sure looks

> promising.

> ne AKA Little Ninja Chickie

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

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> http://profiles.msn.com.

>

>

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>

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>

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>

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> ~~~~~~~~~~~~~~~

>

> “Hold on to what is good, even if it's a handful of earth. Hold on to

what you believe, even if it's a tree that stands by itself. Hold on to

what you must do even, if it's a long way from here. Hold on to your life,

even if it's easier to let go. " - Pueblo Prayer

>

--- angelbear1129@...

The Being Sick Community

Sharing our resources:-

Add a website URL you think may help another, or even add a link to your own

webpage.

Chat:-

Scheduled Daily Chats at # on IRC DALnet.

http://www.elderwyn.com/members/chat.html

Egroups JAVA based chatroom for your use anytime:-

chat/

(Anyone on web-tv will not be able to access java and it is very slow

compared to IRC.)

Memorial Page:-

http://www.elderwyn.com/members/inlovingmemory.html

Members Lounge:-

Medical resources, counselling via email, information on the daily chat

times, free psychic readings and the cartoon of the day.

http://www.elderwyn.com/members

Members Profiles, pictures, and birthdays:-

Message Archives and Digest Attachment Pictures:-

messages/

Promoting This Community:-

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promote/

Subscription Details:-

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2) Daily Digest - sends you 25 messages in one single email for you to

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3) Web only/No mail - means that you can pop into eGroups at your

convenience and receive no email.

To modify your subscription settings please visit

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To subscribe or unsubscribe

subscribe/

~~~~~~~~~~~~~~~

“Hold on to what is good, even if it's a handful of earth. Hold on to what

you believe, even if it's a tree that stands by itself. Hold on to what you

must do even, if it's a long way from here. Hold on to your life, even if

it's easier to let go. " - Pueblo Prayer

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

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I'm glad you like your new Dr. and he's doing for you. Hope and Pray

all turns out good for you. Are your legs still weeping? Did he have

anything to say about them?

Hugs

Helen

> Hi all,

> Went to see new Dr in Atlanta. He is director of a hepatitis research

group

> at Emory University. He seems to think that most of my recent problems

are

> caused by the Prednisone. (Every time I go to my GP with new symptoms,

she

> increases it. I'm now on 60 mgm/day!) Anyway, he started " weaning " me

off

> it, took about a gallon of blood, & I go back in 1 month. He's going to

> start me on Imuran. (My GP told me " nobody uses that drug anymore " ) I got

> this dr's name from a lady on another list that I belong to. She also has

> autoimmune hepatitis & this dr has really helped her. It sure looks

> promising.

> ne AKA Little Ninja Chickie

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

> Share information about yourself, create your own public profile at

> http://profiles.msn.com.

>

>

> The Being Sick Community

>

> Sharing our resources:-

> Add a website URL you think may help another, or even add a link to your

own webpage.

>

>

> Chat:-

> Scheduled Daily Chats at # on IRC DALnet.

> http://www.elderwyn.com/members/chat.html

>

> Egroups JAVA based chatroom for your use anytime:-

> chat/

> (Anyone on web-tv will not be able to access java and it is very slow

compared to IRC.)

>

> Memorial Page:-

> http://www.elderwyn.com/members/inlovingmemory.html

>

> Members Lounge:-

> Medical resources, counselling via email, information on the daily chat

times, free psychic readings and the cartoon of the day.

http://www.elderwyn.com/members

>

> Members Profiles, pictures, and birthdays:-

>

>

> Message Archives and Digest Attachment Pictures:-

> messages/

>

> Promoting This Community:-

> Would you like people to be able to join from your webpage?

> promote/

>

> Subscription Details:-

> 1) Individual email - means that every email sent to the list you receive.

> 2) Daily Digest - sends you 25 messages in one single email for you to

browse. This is an excellent option if you receive alot of email.

> 3) Web only/No mail - means that you can pop into eGroups at your

convenience and receive no email.

>

> To modify your subscription settings please visit

mygroups

>

> To subscribe or unsubscribe

> subscribe/

>

> ~~~~~~~~~~~~~~~

>

> “Hold on to what is good, even if it's a handful of earth. Hold on to

what you believe, even if it's a tree that stands by itself. Hold on to

what you must do even, if it's a long way from here. Hold on to your life,

even if it's easier to let go. " - Pueblo Prayer

>

--- angelbear1129@...

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Hi ne,

I'm so glad that you've finally found some help! :) I'm keeping my fingers

crossed for you that this doc works out!

susanne Sullivan wrote:

> Hi all,

> Went to see new dr in Atlanta. He is director of a hepatitis research group

> at Emory University. He seems to think that most of my recent problems are

> caused by the Prednisone. (Every time I go to my GP with new symptoms, she

> increases it. I'm now on 60 mgm/day!) Anyway, he started " weaning " me off

> it, took about a gallon of blood, & I go back in 1 month. He's going to

> start me on Imuran. (My GP told me " nobody uses that drug anymore " ) I got

> this dr's name from a lady on another list that I belong to. She also has

> autoimmune hepatitis & this dr has really helped her. It sure looks

> promising.

> ne AKA Little Ninja Chickie

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

> Share information about yourself, create your own public profile at

> http://profiles.msn.com.

>

> The Being Sick Community

>

> Sharing our resources:-

> Add a website URL you think may help another, or even add a link to your own

webpage.

>

>

> Chat:-

> Scheduled Daily Chats at # on IRC DALnet.

> http://www.elderwyn.com/members/chat.html

>

> Egroups JAVA based chatroom for your use anytime:-

> chat/

> (Anyone on web-tv will not be able to access java and it is very slow compared

to IRC.)

>

> Memorial Page:-

> http://www.elderwyn.com/members/inlovingmemory.html

>

> Members Lounge:-

> Medical resources, counselling via email, information on the daily chat times,

free psychic readings and the cartoon of the day.

http://www.elderwyn.com/members

>

> Members Profiles, pictures, and birthdays:-

>

>

> Message Archives and Digest Attachment Pictures:-

> messages/

>

> Promoting This Community:-

> Would you like people to be able to join from your webpage?

> promote/

>

> Subscription Details:-

> 1) Individual email - means that every email sent to the list you receive.

> 2) Daily Digest - sends you 25 messages in one single email for you to browse.

This is an excellent option if you receive alot of email.

> 3) Web only/No mail - means that you can pop into eGroups at your convenience

and receive no email.

>

> To modify your subscription settings please visit

mygroups

>

> To subscribe or unsubscribe

> subscribe/

>

> ~~~~~~~~~~~~~~~

>

> “Hold on to what is good, even if it's a handful of earth. Hold on to what you

believe, even if it's a tree that stands by itself. Hold on to what you must do

even, if it's a long way from here. Hold on to your life, even if it's easier to

let go. " - Pueblo Prayer

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"Helen- yes my right leg is weeping still. He said" one thing at a time."

*ugh* ne, that is the same with me and my hormones. Cant take anything till we see what happens .... they've only been watching for 2 years *jumps up and down in a pink fit* Hope they are quicker on your leg then my hormones!

Love A

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  • 5 years later...
Guest guest

Bartolino wrote:

Has anyone heard of Dr Jo Buyski from Penn

Presbyterian Med Center

Did you mean, "Jo Buyske, MD?"

See:

http://www.pennhealth.com/WagForm/MainPage.aspx?config=provider & P=PP & ID=905

and publications:

http://www.uphs.upenn.edu/surgery/fac/jb-pub.html

"Recognized in Philadelphia Magazine's May 2002, 2005, 2006 Top

Docs issue"

notan

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Guest guest

Yes

-- Re: New Dr

Bartolino wrote:

Has anyone heard of Dr Jo Buyski from Penn Presbyterian Med CenterDid you mean, "Jo Buyske, MD?"See:http://www.pennhealth.com/WagForm/MainPage.aspx?config=provider & P=PP & ID=905and publications:http://www.uphs.upenn.edu/surgery/fac/jb-pub.html"Recognized in Philadelphia Magazine's May 2002, 2005, 2006 Top Docs issue"notan

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Guest guest

Noton after reading What do you think of her ????

-- Re: New Dr

Bartolino wrote:

Has anyone heard of Dr Jo Buyski from Penn Presbyterian Med CenterDid you mean, "Jo Buyske, MD?"See:http://www.pennhealth.com/WagForm/MainPage.aspx?config=provider & P=PP & ID=905and publications:http://www.uphs.upenn.edu/surgery/fac/jb-pub.html"Recognized in Philadelphia Magazine's May 2002, 2005, 2006 Top Docs issue"notan

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Guest guest

Bartolino wrote:

> Noton after reading What do you think of her ????

It looks like in general she should be good. There was not a lot written

about achalasia or esophageal motility disorders, so it is hard to say

how focused she is on those. She has published on a topic about the

outcomes of myotomies with fundoplication. She has also published a

number of papers not related to achalasia. She lists achalasia as one of

her interest, but that is a long list. I would think that if she treats

achalasia frequently she should be a good choice. You would have to ask

for that information.

Along this line of thought, that article I gave a link to in a message

yesterday discussed the lessons they learned in the process of doing 100

myotomies. In it was given statistics comparing the first 50 to the

second 50 and how the statistics were better for the second 50. You want

a surgeon that is not just good generally with lots of general

experience, you want a surgeon that is very good and very experienced

with achalasia specifically. She may be, but I can't be sure from the

web site.

notan

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  • 5 years later...

I wanted to let you know that our center has hired a psychologist to work ½

time with us. She will be seeing individuals with high functioning autism and

Asperger’s and she will provide individual/family therapy. The individuals

that will get referred to her, will be low-income families that can’t afford

individual/family therapy with a psychologist. She will be providing this

therapy Free of charge to the individuals that are referred to her.

 

For an individual to get started with her, they will have to contact me and I

will need to get some information from them. Mostly I will need them to provide

me some income information, so that I can determine the family qualify for the

therapy based on income.

 

Our psychologist’s name is Luxon, Psy.D. She sees young children,

adolescents and adults with ASD (she also works with other diagnoses). Her

location is 1786 Moon Lake Blvd. Hoffman Estates, IL 60169.

 

If you come across a family that might benefit from Dr. Luxon’s services,

please send them my way and I can get them started with the process of seeing

Dr. Luxon.

 

Thanks so much!

 

ne Lukowski, Psy.D.

Clinical Navigator

Autism Spectrum and Developmental Disorders Resource Center

ian Brothers Medical Plaza

1786 Moon Lake Blvd, Suite 202

Hoffman Estates, IL 60169

847-755-8536

ne.Lukowski@...

www.abbhh.org/autism 

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