Re: Message

[Guest guest]

Good thoughts to live by .

Martha from Mo.

[Guest guest]

Good thoughts to live by .

Martha from Mo.

[Guest guest]

Hi Janet,

my name is Patti and my hubby Mike was diagnosed with PSC in 1997, they think he had it as far back as 1988, anyway, we are very pro-active alternatively with the disease and so far there have been no signs of progression....I would be MORE than happy to share our protocol with you.

welcome.....sorry you have to be here!

Patti

>From: " Janet " >Reply-To: >To: >Subject: Message >Date: Thu, 02 Aug 2001 09:56:54 -0400 > >Hi. My name is Janet , I am a 49 year old female and I have recently been diagnosed with Sclerosing Choloangitis. Although I have been educating myself about this disease, I am interested in hearing from others who have the disease. Particularly, how you cope with the symptoms. I find I am fatigued and have difficulty sleeping. Is there anything any of you do to get more energy and help you sleep? I am taking a daily multi-vitaimin, URSO and Milk Thistle. Is there anything else I can do? > >Also, how do cope emotionally? Highs? Low? Inbetweens? Please respond. > >Thanks a lot. > >**************************************************************** >This e-mail and any documents accompanying this e-mail contain information which is confidential and/or legally privileged. The information is intended only for the use of the individual or entity named on this e-mail. If you are not the intended recipient, you are hereby notified that any disclosure, copying, distribution, or the taking of any action in reliance on the contents of this e-mail information, is strictly prohibited and that the documents should be returned to Saiber Schlesinger Satz & Goldstein, LLC immediately. In this regard, if you have received this e-mail in error, please notify us by return e-mail or telephone () immediately, delete the e-mail and all attachments and destroy all hard copies of same. > Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Janet, I have hit a comfort level. I stopped taking Questran. So now I take Actigall/Urso the whole dose at bedtime. Then during the day I take Atarax 2 times. So really for me, I swallow 5 prescribed pills, and 3 vitamins. My body seems to tolerate them well, especially since I take the Actigall at bedtime and don't take Questran.

I switched to light therapy to help alleviate the itching and it has, so now I just use maintenance of Atarax. If itching resumes, I will add the Questran and perhaps the Benadryl at nighttime.

I had to fiddle around with dosages (with doctor supervision) until I found what worked best for me.

I've only been living with the PSC symptoms for a little over a year now. I've had the dx for 4, but I didn't display physical symtoms until last June. So this is all still a fairly new experience for me. This group has made a tremendous difference in my life. They gave me HOPE and they gave me the ability to know that my life still goes on even with PSC. They have showed me how to live with this. When I first joined, the discussion for the day was about GTO's and I thought, "hey, how can you talk about cars and such when I am hurting and we are all seriously ill." But, they taught me how. That is why from time to time, we are chatting about things other than PSC, because we are trying to live our lives the best way we can.

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms 2000)

[Guest guest]

Janet, I have hit a comfort level. I stopped taking Questran. So now I take Actigall/Urso the whole dose at bedtime. Then during the day I take Atarax 2 times. So really for me, I swallow 5 prescribed pills, and 3 vitamins. My body seems to tolerate them well, especially since I take the Actigall at bedtime and don't take Questran.

I switched to light therapy to help alleviate the itching and it has, so now I just use maintenance of Atarax. If itching resumes, I will add the Questran and perhaps the Benadryl at nighttime.

I had to fiddle around with dosages (with doctor supervision) until I found what worked best for me.

I've only been living with the PSC symptoms for a little over a year now. I've had the dx for 4, but I didn't display physical symtoms until last June. So this is all still a fairly new experience for me. This group has made a tremendous difference in my life. They gave me HOPE and they gave me the ability to know that my life still goes on even with PSC. They have showed me how to live with this. When I first joined, the discussion for the day was about GTO's and I thought, "hey, how can you talk about cars and such when I am hurting and we are all seriously ill." But, they taught me how. That is why from time to time, we are chatting about things other than PSC, because we are trying to live our lives the best way we can.

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms 2000)

[Guest guest]

Janet, I have hit a comfort level. I stopped taking Questran. So now I take Actigall/Urso the whole dose at bedtime. Then during the day I take Atarax 2 times. So really for me, I swallow 5 prescribed pills, and 3 vitamins. My body seems to tolerate them well, especially since I take the Actigall at bedtime and don't take Questran.

I switched to light therapy to help alleviate the itching and it has, so now I just use maintenance of Atarax. If itching resumes, I will add the Questran and perhaps the Benadryl at nighttime.

I had to fiddle around with dosages (with doctor supervision) until I found what worked best for me.

I've only been living with the PSC symptoms for a little over a year now. I've had the dx for 4, but I didn't display physical symtoms until last June. So this is all still a fairly new experience for me. This group has made a tremendous difference in my life. They gave me HOPE and they gave me the ability to know that my life still goes on even with PSC. They have showed me how to live with this. When I first joined, the discussion for the day was about GTO's and I thought, "hey, how can you talk about cars and such when I am hurting and we are all seriously ill." But, they taught me how. That is why from time to time, we are chatting about things other than PSC, because we are trying to live our lives the best way we can.

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms 2000)

[Guest guest]

To and all the PSCers:

Although I am new to the group, I just wanted to take this opportunity to tell

all of you how much you are helping me to cope with PSC. (I have tears in my

eyes as I am writing, so bear with me - :-))

Every day I am dealing with some malady of some sort and was beginning to wonder

how in the world I would be able to deal with this for years when I was having

difficulty dealing with it on a day-to-day basis. Your emails have encouraged

me to see that it is possible, taken one day at a time, and with people like all

of you, I know I will be able to get through this.

A Big thank you goes out to Linnie and all of the founders for their vision for

this group. Every PSC member is a life line. Thanks so much!!!!

:-)

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

This e-mail and any documents accompanying this e-mail contain information which

is confidential and/or legally privileged. The information is intended only for

the use of the individual or entity named on this e-mail. If you are not the

intended recipient, you are hereby notified that any disclosure, copying,

distribution, or the taking of any action in reliance on the contents of this

e-mail information, is strictly prohibited and that the documents should be

returned to Saiber Schlesinger Satz & Goldstein, LLC immediately. In this

regard, if you have received this e-mail in error, please notify us by return

e-mail or telephone () immediately, delete the e-mail and all

attachments and destroy all hard copies of same.

>>> Baudoux-Northrup 08/02/01 03:54PM >>>

Janet, I have hit a comfort level. I stopped taking Questran. So now I take

Actigall/Urso the whole dose at bedtime. Then during the day I take Atarax 2

times. So really for me, I swallow 5 prescribed pills, and 3 vitamins. My body

seems to tolerate them well, especially since I take the Actigall at bedtime and

don't take Questran.

I switched to light therapy to help alleviate the itching and it has, so now I

just use maintenance of Atarax. If itching resumes, I will add the Questran and

perhaps the Benadryl at nighttime.

I had to fiddle around with dosages (with doctor supervision) until I found what

worked best for me.

I've only been living with the PSC symptoms for a little over a year now. I've

had the dx for 4, but I didn't display physical symtoms until last June. So

this is all still a fairly new experience for me. This group has made a

tremendous difference in my life. They gave me HOPE and they gave me the ability

to know that my life still goes on even with PSC. They have showed me how to

live with this. When I first joined, the discussion for the day was about GTO's

and I thought, " hey, how can you talk about cars and such when I am hurting and

we are all seriously ill. " But, they taught me how. That is why from time to

time, we are chatting about things other than PSC, because we are trying to live

our lives the best way we can.

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms

2000)

[Guest guest]

To and all the PSCers:

Although I am new to the group, I just wanted to take this opportunity to tell

all of you how much you are helping me to cope with PSC. (I have tears in my

eyes as I am writing, so bear with me - :-))

Every day I am dealing with some malady of some sort and was beginning to wonder

how in the world I would be able to deal with this for years when I was having

difficulty dealing with it on a day-to-day basis. Your emails have encouraged

me to see that it is possible, taken one day at a time, and with people like all

of you, I know I will be able to get through this.

A Big thank you goes out to Linnie and all of the founders for their vision for

this group. Every PSC member is a life line. Thanks so much!!!!

:-)

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

This e-mail and any documents accompanying this e-mail contain information which

is confidential and/or legally privileged. The information is intended only for

the use of the individual or entity named on this e-mail. If you are not the

intended recipient, you are hereby notified that any disclosure, copying,

distribution, or the taking of any action in reliance on the contents of this

e-mail information, is strictly prohibited and that the documents should be

returned to Saiber Schlesinger Satz & Goldstein, LLC immediately. In this

regard, if you have received this e-mail in error, please notify us by return

e-mail or telephone () immediately, delete the e-mail and all

attachments and destroy all hard copies of same.

>>> Baudoux-Northrup 08/02/01 03:54PM >>>

Janet, I have hit a comfort level. I stopped taking Questran. So now I take

Actigall/Urso the whole dose at bedtime. Then during the day I take Atarax 2

times. So really for me, I swallow 5 prescribed pills, and 3 vitamins. My body

seems to tolerate them well, especially since I take the Actigall at bedtime and

don't take Questran.

I switched to light therapy to help alleviate the itching and it has, so now I

just use maintenance of Atarax. If itching resumes, I will add the Questran and

perhaps the Benadryl at nighttime.

I had to fiddle around with dosages (with doctor supervision) until I found what

worked best for me.

I've only been living with the PSC symptoms for a little over a year now. I've

had the dx for 4, but I didn't display physical symtoms until last June. So

this is all still a fairly new experience for me. This group has made a

tremendous difference in my life. They gave me HOPE and they gave me the ability

to know that my life still goes on even with PSC. They have showed me how to

live with this. When I first joined, the discussion for the day was about GTO's

and I thought, " hey, how can you talk about cars and such when I am hurting and

we are all seriously ill. " But, they taught me how. That is why from time to

time, we are chatting about things other than PSC, because we are trying to live

our lives the best way we can.

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms

2000)

[Guest guest]

To and all the PSCers:

Although I am new to the group, I just wanted to take this opportunity to tell

all of you how much you are helping me to cope with PSC. (I have tears in my

eyes as I am writing, so bear with me - :-))

Every day I am dealing with some malady of some sort and was beginning to wonder

how in the world I would be able to deal with this for years when I was having

difficulty dealing with it on a day-to-day basis. Your emails have encouraged

me to see that it is possible, taken one day at a time, and with people like all

of you, I know I will be able to get through this.

A Big thank you goes out to Linnie and all of the founders for their vision for

this group. Every PSC member is a life line. Thanks so much!!!!

:-)

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

This e-mail and any documents accompanying this e-mail contain information which

is confidential and/or legally privileged. The information is intended only for

the use of the individual or entity named on this e-mail. If you are not the

intended recipient, you are hereby notified that any disclosure, copying,

distribution, or the taking of any action in reliance on the contents of this

e-mail information, is strictly prohibited and that the documents should be

returned to Saiber Schlesinger Satz & Goldstein, LLC immediately. In this

regard, if you have received this e-mail in error, please notify us by return

e-mail or telephone () immediately, delete the e-mail and all

attachments and destroy all hard copies of same.

>>> Baudoux-Northrup 08/02/01 03:54PM >>>

Janet, I have hit a comfort level. I stopped taking Questran. So now I take

Actigall/Urso the whole dose at bedtime. Then during the day I take Atarax 2

times. So really for me, I swallow 5 prescribed pills, and 3 vitamins. My body

seems to tolerate them well, especially since I take the Actigall at bedtime and

don't take Questran.

I switched to light therapy to help alleviate the itching and it has, so now I

just use maintenance of Atarax. If itching resumes, I will add the Questran and

perhaps the Benadryl at nighttime.

I had to fiddle around with dosages (with doctor supervision) until I found what

worked best for me.

I've only been living with the PSC symptoms for a little over a year now. I've

had the dx for 4, but I didn't display physical symtoms until last June. So

this is all still a fairly new experience for me. This group has made a

tremendous difference in my life. They gave me HOPE and they gave me the ability

to know that my life still goes on even with PSC. They have showed me how to

live with this. When I first joined, the discussion for the day was about GTO's

and I thought, " hey, how can you talk about cars and such when I am hurting and

we are all seriously ill. " But, they taught me how. That is why from time to

time, we are chatting about things other than PSC, because we are trying to live

our lives the best way we can.

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms

2000)

[Guest guest]

Hi Janet, I am also a fairly recent receiver of the PSC news. I believe I am

very early in the progression, since my liver test numbers have only been

high once, and the first and only ERCP I've had shows slight narrowing and

beading of the bile ducts. A liver biopsy revealed only slight inflammation.

I also have UC, which is well under control (it was pretty dreadful last

year for 5 months when it wasn't " under control " ) with Pentasa (500

milligrams, once daily).

The only disease related stomach pain I have experienced so far was due, I

believe, to the ERCP. I think the flexible scope caused some irritation of

the stomach to intestine valve, which caused me moderate pain when I would

lay down to sleep. I was able to minimize the pain by not eating anything

after about 6 pm. The pain stopped bothering me about a month after the

ERCP.

As far as fatigue goes, I do experience a little. I think for me that taking

Panax Ginseng has helped out some, plus multivitamins and a good exercise

program (weights and running), and healthy diet (minimize sugars and

processed foods, virtually no dairy, minimal fried foods/bad fats,

supplemental good oils, lots of fresh fruit/veggies, etc.) I'm still

experimenting with the ginseng to see if the effect is repeatable. I lost

some weight due to the UC. I'm 6' tall and weighed 155. With good

eating/supplements/weights I've put on about 15 pounds.

I take milk thistle, as well as 250 mg Urso 3 times daily. My last blood

test showed all my liver numbers back to normal! By God's grace I hope they

stay that way for a good long time, although they don't necessarily indicate

or prove the PSC is not still working away. I do think it is important that

we be willing to make major lifestyle changes if we want to " fight " or slow

down this thing.

Hope this info helps.

PATTI: could you please send me your " protocol " ? Thanks

Major

Air National Guard pilot

UC dx 02/99; PSC dx 03/01

[Guest guest]

Hi Janet, I am also a fairly recent receiver of the PSC news. I believe I am

very early in the progression, since my liver test numbers have only been

high once, and the first and only ERCP I've had shows slight narrowing and

beading of the bile ducts. A liver biopsy revealed only slight inflammation.

I also have UC, which is well under control (it was pretty dreadful last

year for 5 months when it wasn't " under control " ) with Pentasa (500

milligrams, once daily).

The only disease related stomach pain I have experienced so far was due, I

believe, to the ERCP. I think the flexible scope caused some irritation of

the stomach to intestine valve, which caused me moderate pain when I would

lay down to sleep. I was able to minimize the pain by not eating anything

after about 6 pm. The pain stopped bothering me about a month after the

ERCP.

As far as fatigue goes, I do experience a little. I think for me that taking

Panax Ginseng has helped out some, plus multivitamins and a good exercise

program (weights and running), and healthy diet (minimize sugars and

processed foods, virtually no dairy, minimal fried foods/bad fats,

supplemental good oils, lots of fresh fruit/veggies, etc.) I'm still

experimenting with the ginseng to see if the effect is repeatable. I lost

some weight due to the UC. I'm 6' tall and weighed 155. With good

eating/supplements/weights I've put on about 15 pounds.

I take milk thistle, as well as 250 mg Urso 3 times daily. My last blood

test showed all my liver numbers back to normal! By God's grace I hope they

stay that way for a good long time, although they don't necessarily indicate

or prove the PSC is not still working away. I do think it is important that

we be willing to make major lifestyle changes if we want to " fight " or slow

down this thing.

Hope this info helps.

PATTI: could you please send me your " protocol " ? Thanks

Major

Air National Guard pilot

UC dx 02/99; PSC dx 03/01