Re: Digest Number 108

[Guest guest]

In a message dated 4/6/99 6:20:16 AM Eastern Daylight Time,

onelist writes:

<<

Hi n --

Thanks! Yes, I am absolutely sure that the disappearance of my pain, fever,

cognitive dysfunction, repeated sinus infections, and nearly all the fatigue

are due to oral interferon. >>

Hi and all,

I am drawing a conclusion from your post, that I thought I would run by all

of you. Remembering that there has been much discussion about the different

subsets of CFIDS sufferers...I noticed that you have a lot of symptoms that I

don't have.

I have never had repeated infections, or fevers. As a matter of fact, just

the opposite. My body seems to have an overactive immune system in many

ways. Digestive especially. I haven't had a flu or the cold or an infection

or fever in over 10 years.

My symptoms seem to be more energy, nuero-muscular, cognitive too.

I have heard that not everyone responds to Interferon...and I am wondering if

the difference might be along the lines of the different sub groups.

Does anyone have any thoughts on this?

Jane

[Guest guest]

Hi, Everyone!

Saw my local doctor today--I wasn't as organized as the one person who

wrote in, with all the file folders. I just dumped the info. I had

gleaned from Onelist, etc., into a manila envelope for the poor man, with

my chicken scratchings to accompany it all.

He is going to research the oral alpha interferon. I'm confused, though,

and feel as if I've missed some key stuff in the list discussions. Since

everyone refers to the medication as " oral " interferon, I assumed it is

taken orally. My Dr. says it's an injectable--he has patients on it, but

not for CFIDS. he went through the routine about the hydrochloric acid in

the stomach which would destroy whatever it is that makes alpha interferon

work. ( was having a pretty foggy day, so don't ask me to repeat all this,

please!)

I know someone has mentioned interferon lozenges on the horizon, but not

yet available.

Also, about the Kutapressin as pig liver extract. i have wondered about

danger from this--the great Swine flu, for instance--but assumed that

something is done to the stuff to make it safe. Surely " they " don't just

drain the pig's liver into vials--you know what I mean Dr. Cheney told

me that it was developed, i believe, in the 1930s to treat acne. So if

there were a problem with it, seems it would have surfaced by now.

Cheney's very interested in the polio vaccines and posssible connections

with CFIDS outbreaks, so I think he's be concerned about pig viruses, too.

How do all of you understand this stuff? I feel as if everyone but me must

have RN or M.D. degrees. I never even took high school or college

biology...

Does anyone take B-12 injections, or is that old-fashioned? I've been

taking sublingual B-12, but had my first injection today. Beforehand, i

was feeling fairly crummy. Afterwards, I had a surge of energy, but didn't

connect it to the B-12. Of course, since i was feeling better, I went

window-shopping, etc., and " overdid " . So now I'm pretty tired and achey.

Would the B-12 actually help that quickly, then fade away? I'm just taking

one injection/mo. for a few months. the Dr. said " it can't hurt " ...

Aloha!

Teeza

[Guest guest]

Theresa Schroeder wrote:

> Also, about the Kutapressin as pig liver extract. i have wondered about

> danger from this--the great Swine flu, for instance--but assumed that

> something is done to the stuff to make it safe. Surely " they " don't just

> drain the pig's liver into vials--you know what I mean Dr. Cheney told

> me that it was developed, i believe, in the 1930s to treat acne. So if

> there were a problem with it, seems it would have surfaced by now.

Teeza, I probably shouldn't have muddied the waters about bugs from

pigs. The stuff is probably safe. I am just a freak about mad cow

disease which is caused by something called prions. Prions are almost

indestructable. They can't be killed by heat and when they get into the

soil they take a long time to die. Of course, this all a bad joke to me

since I was eating steak in England one month before the British gov

finally owned up to the problem and stopped feeding dead cows to live

cows to end the disease spread. I figure if I'm going to get mad cow

disease it is too late for me. But, in theory, I can't help but worry

about products such as kutapressin coming from pigs organs. I'm sure it

is safer that the meat we eat every day. I am considering becoming a

vegan!!!! :-)

a

[Guest guest]

At 09:43 AM 04/06/1999 EDT, you wrote:

>From: SlvrMoon2@...

>

>In a message dated 4/6/99 6:20:16 AM Eastern Daylight Time,

>onelist writes:

>

><<

> Hi n --

>

> Thanks! Yes, I am absolutely sure that the disappearance of my pain, fever,

> cognitive dysfunction, repeated sinus infections, and nearly all the fatigue

> are due to oral interferon. >>

>

>

>Hi and all,

>

>I am drawing a conclusion from your post, that I thought I would run by all

>of you. Remembering that there has been much discussion about the different

>subsets of CFIDS sufferers...I noticed that you have a lot of symptoms

that I

>don't have.

>

>I have never had repeated infections, or fevers. As a matter of fact, just

>the opposite. My body seems to have an overactive immune system in many

>ways. Digestive especially. I haven't had a flu or the cold or an

infection

>or fever in over 10 years.

>

>My symptoms seem to be more energy, nuero-muscular, cognitive too.

>

>I have heard that not everyone responds to Interferon...and I am wondering

if

>the difference might be along the lines of the different sub groups.

>

>Does anyone have any thoughts on this?

>

>Jane

=====

absolutely, jane there are subgroups. and if you have not had any respiratory

problems in the last 10 years, YOU ARE DEFINITELY NOT IN MY SUBGROUP.

not that you don't feel like hell a lot, for that we are all the same.....

getting tested for immune function - and the cytokines, interferons,

might be helpful.

vojdani's lab does some testing, but make sure you understand what the

tests are all about before you send blood work to them. and make sure your

doctor understands. i am not doing any things unless they fit in with my

test results, i want the rationale for doing things, not just scattershot.

http://www.immuno-sci-lab.com/fatigue.html

nancy mcfadden

[Guest guest]

Hi All,

My name is Judy and I live in Mississippi. My mother died April 28

from AIH, and was never diagnosed under the last week of her life. She went

in the hospital because of a blocked bile duct and to have her gallbladder

removed. From the surgery, they discovered she was in the final stages of

cirrhosis of the liver. She died 2 weeks later after much suffering. I

discovered this list in my search to learn more about this disease. One

doctor told me that it " tends to run in families " and another doctor said it

did not. DOES SOMEONE ON THIS LIST KNOW? I am 41 and for the past several

years I have VERY similar symptoms of my Mom's. Whether related to this

disease, I don't know, but they are: itching, achy and stiff joints,

overwhelming fatigue, swelling hands and feet, foot pain, stomach discomfort,

pain under my right ribs. Also, I have a rash on my left shin. I have been

to several doctors who all found different things. i.e. The itching, the

dermatologist said was dermographism. The foot pain I was told was heel

spurs. The stomach discomfort, my gynecologist thought was endometriosis and

I had surgery last October to remove it, though they found none. They did

find an adhesion though, that had wrapped around my intestines attaching them

to my back and removed it. I was hospitalized last summer from a supposed

‘virus' when I couldn't quit throwing up. After 15 attempts, they gave up

trying to give me a drip. My veins would either collapse or ‘blow'. This

happened to my Mom too when she was in the hospital and one nurse said it

went along with the disease. In my researching, I haven't found anything

about it. Anyway, I just made an appointment with a Gastroenterologist (who

can't see me until August 10th -grrrrrrrrr) and I am scared of what I will

find out. I'm also so very scared of the possible treatment. I've known for

some time that ‘something' has been wrong, but after one doctor told me that

my symptoms were probably caused from depression, I gave up trying. To me, I

felt I was depressed because I felt so bad. It would be a relief to know,

for me and my family, who seems to get aggravated at me for being tired all

the time. Just reading your posts has been informative but also very scary

at the seriousness of this disease.

Sorry this E is so long.

Judy

[Guest guest]

Judy:

AIH runs in families and it tends to attack women more then men. It would

not hurt to have the liver blood tests done and maybe check out the liver it

self. I know that I had it longer that when I found out about it.

Please get the tests and find out.

Sue AIH

Wisconsin

[Guest guest]

When a doctor says it is all in your head I would say " NO IT IS IN MY LIVER "

YOU DUMB ASS

SUE AIH

WISCONSIN

[Guest guest]

Re: [ ] Digest Number 108

>From: JBerry122@...

>

>Hi All,

> My name is Judy and I live in Mississippi. My mother died April 28

>from AIH, and was never diagnosed under the last week of her life. She

went

>in the hospital because of a blocked bile duct and to have her gallbladder

>removed. From the surgery, they discovered she was in the final stages of

>cirrhosis of the liver. She died 2 weeks later after much suffering. I

>discovered this list in my search to learn more about this disease. One

>doctor told me that it " tends to run in families " and another doctor said

it

>did not. DOES SOMEONE ON THIS LIST KNOW? I am 41 and for the past

several

>years I have VERY similar symptoms of my Mom's. Whether related to this

>disease, I don't know, but they are: itching, achy and stiff joints,

>overwhelming fatigue, swelling hands and feet, foot pain, stomach

discomfort,

>pain under my right ribs. Also, I have a rash on my left shin. I have been

>to several doctors who all found different things. i.e. The itching, the

>dermatologist said was dermographism. The foot pain I was told was heel

>spurs. The stomach discomfort, my gynecologist thought was endometriosis

and

>I had surgery last October to remove it, though they found none. They did

>find an adhesion though, that had wrapped around my intestines attaching

them

>to my back and removed it. I was hospitalized last summer from a supposed

>‘virus' when I couldn't quit throwing up. After 15 attempts, they gave up

>trying to give me a drip. My veins would either collapse or ‘blow'. This

>happened to my Mom too when she was in the hospital and one nurse said it

>went along with the disease. In my researching, I haven't found anything

>about it. Anyway, I just made an appointment with a Gastroenterologist

(who

>can't see me until August 10th -grrrrrrrrr) and I am scared of what I will

>find out. I'm also so very scared of the possible treatment. I've known

for

>some time that ‘something' has been wrong, but after one doctor told me

that

>my symptoms were probably caused from depression, I gave up trying. To me,

I

>felt I was depressed because I felt so bad. It would be a relief to know,

>for me and my family, who seems to get aggravated at me for being tired all

>the time. Just reading your posts has been informative but also very scary

>at the seriousness of this disease.

> Sorry this E is so long.

> Judy

Dear Judy,

You need to get yourself to a good Hepotologist. You can usually call the

State Medical Board and get a good recommendation. My doctor said it is in

my " genes " and that somewhere along the way, someone in my family had this

and never knew. People get all types of liver disease like Hep. C. and can

live their whole lives and never know. My symptoms were very much like the

flu. I may have had these symptoms many times years ago and thought I had

the flu. Sometimes it is really hard to diagnose. I thought I had the flu

with this episode except it turned into other symptoms like tea colored

urine, blond stools and jaundice. I knew-This is not the flu. I feel

confident that I have a good doctor. He put me on Predg.(steroids)

immediately and it worked! They saved my life-and my liver. I only had

inflammation and no scarring. I am now off Predg. and on 6MP or

Purinethol(immunosuppresent) and am in remission. I am feeling very well

except I have only lost about 5 lbs of the 15 or so that I gained from the

steroids. I still get tired easily, but I get up in the morning and thank

G-d that I am alive. Best of luck to you. Find a good doctor-don't wait and

don't let them tell you it's " all in your head " .

Elaine

Baltimore

>

>

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

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>

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>

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[Guest guest]

Hey I like this. I'll have to use that one. *L*

>From: Roselle50@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Digest Number 108

>Date: Tue, 22 Jun 1999 01:39:49 EDT

>

>From: Roselle50@...

>

>When a doctor says it is all in your head I would say " NO IT IS IN MY

>LIVER "

>YOU DUMB ASS

>

>SUE AIH

>WISCONSIN

>

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

[Guest guest]

Yeh! You go girl!

--- Roselle50@... wrote:

> From: Roselle50@...

>

> When a doctor says it is all in your head I would

> say " NO IT IS IN MY LIVER "

> YOU DUMB ASS

>

> SUE AIH

> WISCONSIN

>

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

[Guest guest]

Judy,

You should run (not walk) to the nearest doctor and get this under control

quickly. Have the doctors run Liver Function Blood tests?, or just normal

blood tests? You need to find a doctor that will do as you ask. They are

not easy to find. Good luck.

SueB.

----------

> From: JBerry122@...

> onelist

> Subject: Re: [ ] Digest Number 108

> Date: Tuesday, 22 June 1999 0:55

>

> From: JBerry122@...

>

> Hi All,

> My name is Judy and I live in Mississippi. My mother died April 28

> from AIH, and was never diagnosed under the last week of her life. She

went

> in the hospital because of a blocked bile duct and to have her

gallbladder

> removed. From the surgery, they discovered she was in the final stages

of

> cirrhosis of the liver. She died 2 weeks later after much suffering. I

> discovered this list in my search to learn more about this disease. One

> doctor told me that it " tends to run in families " and another doctor said

it

> did not. DOES SOMEONE ON THIS LIST KNOW? I am 41 and for the past

several

> years I have VERY similar symptoms of my Mom's. Whether related to this

> disease, I don't know, but they are: itching, achy and stiff joints,

> overwhelming fatigue, swelling hands and feet, foot pain, stomach

discomfort,

> pain under my right ribs. Also, I have a rash on my left shin. I have

been

> to several doctors who all found different things. i.e. The itching,

the

> dermatologist said was dermographism. The foot pain I was told was heel

> spurs. The stomach discomfort, my gynecologist thought was endometriosis

and

> I had surgery last October to remove it, though they found none. They

did

> find an adhesion though, that had wrapped around my intestines attaching

them

> to my back and removed it. I was hospitalized last summer from a supposed

> ‘virus' when I couldn't quit throwing up. After 15 attempts, they gave

up

> trying to give me a drip. My veins would either collapse or ‘blow'.

This

> happened to my Mom too when she was in the hospital and one nurse said it

> went along with the disease. In my researching, I haven't found anything

> about it. Anyway, I just made an appointment with a Gastroenterologist

(who

> can't see me until August 10th -grrrrrrrrr) and I am scared of what I

will

> find out. I'm also so very scared of the possible treatment. I've known

for

> some time that ‘something' has been wrong, but after one doctor told me

that

> my symptoms were probably caused from depression, I gave up trying. To

me, I

> felt I was depressed because I felt so bad. It would be a relief to

know,

> for me and my family, who seems to get aggravated at me for being tired

all

> the time. Just reading your posts has been informative but also very

scary

> at the seriousness of this disease.

> Sorry this E is so long.

> Judy

>

>

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

> Looking to expand your world?

>

> ONElist has 170,000 e-mail communities from which to choose!

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

> Please support the American Liver Foundation!

>

> 1.) To subscribe send e-mail to -subscribeonelist

> 2.) To UNsubscribe send to -unsubscribeonelist

> 3.) Digest e-mail format send to -digestonelist

> 4.) Normal e-mail format send to -normalonelist

[Guest guest]

Unsubscribe Multiples-DS, please.

[Guest guest]

I am new to this list, and really do enjoy reading your messages. What is the

web address for the " bath bomb site " . I have made some, but they are never

very fizzy.I use 1part ascorbic acid,2 parts baking soda,and 1 part epsom

salts moistened with sprays of witch hazel. I make them in shell molds.

After a while, they really do look all speckly like real shells, but they are

only a little fizzie. Any ideas?

Vivian in snowy(finally) Pennsylvanis

[Guest guest]

Hope,

You might be able to combine the dual chamber pacer and ICD if the leads are

compatible. Otherwise, you may need to have a lead extraction before

getting the replacement. Be sure to ask lots of questions when you see your

EP. Also, if you know the brands of pacemakers and ICD's look up the web

sites and ask the companys. Medtronic and guidant both have Web sites.

Take care,

Eileen

And welcome to the club!

Re: Fuzzy Brain syndrome

>

> i know how you feel after i have v-tach i cant reminber thangs like

yestday

> i had v-tach when i went out to eat and could not even reminber my name or

> what i was supposed to do with what was on my plate i look silly but i

geuss

> it's not uncommen today i'm try to do my homework and cant remiber how to

> find a 5 out of a number like 15% out of 68 and i just forget my teacher

> donmt understand that though so i guess only people with a zapper

understand

> the zapper huh??

>

> stacie,17 and loosing my mind

>

>

>

> ________________________________________________________________________

> ________________________________________________________________________

>

>

>

>

[Guest guest]

,

What is NAC? I am curious about that one, I'm familiar with the others on

your " combo " treatment.

Also, please let me know if I am responding to this the right way.

I didn't know if the other messages should be on here too?

I'm going to try and get back on here and post now and then.

I have been swamped here, kids out of school and all.

Hope everyone is doing well on here.

Love,

Sher

-----------------------------------------------------

Click here for Free Video!!

http://www.gohip.com/free_video/

[ ] Digest Number 108

[Guest guest]

Terri get out that cage .............the cold symptoms may be allergies also......hard to say for sure.......now the aches are all part of the Hep C..........they come and go and at times you may think you just don't want to move....I do wish ya luck and kep us posted ok?????????

[Guest guest]

I know I use mine often. Kristy says "Mom you all joke about this"...I looked at her and said Honey we have to at times to keep from crying. Isn't laughter so much better? She smiled and said yes Mom you are right.....She wanted a hug then....Such precious moments I had lost for so long......PTL I got em back!!!!!!!!!!!!

[Guest guest]

Thank you dz and Jan. People are afraid of us because of hcv and the

truth is they are more contagious than we are. It just strikes me as

being funny! Or maybe my last brain cell died or some thing. I think i'm

suffering from a terminal cold. Please excuse me but i have a very weird

sense of humor today. I think that i will go back in my cage now lol.

Have a great day all

Terri

[Guest guest]

It is kind of ironic isn't it? Sometimes our sense of

humor is the only thing that keeps us going. We can

forget our troubles for a while. -dz-

--- WTM4@... wrote:

> Thank you dz and Jan. People are afraid of us

> because of hcv and the

> truth is they are more contagious than we are. It

> just strikes me as

> being funny! Or maybe my last brain cell died or

> some thing. I think i'm

> suffering from a terminal cold. Please excuse me but

> i have a very weird

> sense of humor today. I think that i will go back in

> my cage now lol.

> Have a great day all

> Terri

>

>

__________________________________________________

Terrorist Attacks on U.S. - How can you help?

Donate cash, emergency relief information

http://dailynews./fc/US/Emergency_Information/

[Guest guest]

I've been having sinus problems too. I suspect

allergies, I don't know if the tx has anything to do

with it, but I suspect it does, or at least it is

worse than usual. It is hard to breathe, especially at

night. -dz-

--- Jannewilms42@... wrote:

> Terri get out that cage .............the cold

> symptoms may be allergies

> also......hard to say for sure.......now the aches

> are all part of the Hep

> C..........they come and go and at times you may

> think you just don't want to

> move....I do wish ya luck and kep us posted

> ok?????????

>

__________________________________________________

Terrorist Attacks on U.S. - How can you help?

Donate cash, emergency relief information

http://dailynews./fc/US/Emergency_Information/

[Guest guest]

I know what you mean. My ex and her husband moved out

of the state for 2-3 years and I missed quite a bit of

my son from 3-5 years old. What is important is that

you got her back, hopefully you will settle all the

legal stuff & paperwork soon. -dz-

--- Jannewilms42@... wrote:

> I know I use mine often. Kristy says " Mom you all

> joke about this " ...I looked

> at her and said Honey we have to at times to keep

> from crying. Isn't laughter

> so much better? She smiled and said yes Mom you are

> right.....She wanted a

> hug then....Such precious moments I had lost for so

> long......PTL I got em

> back!!!!!!!!!!!!

>

__________________________________________________

Terrorist Attacks on U.S. - How can you help?

Donate cash, emergency relief information

http://dailynews./fc/US/Emergency_Information/

[Guest guest]

Glen:

You are so sweet to write me a poem. Nobody has ever done that for me. Thank

you so much for making my day.

Carole - AKA Thorn Willowweb, AKA Daisy Proudfoot of Standelf.

God grant me the Senility to forget the people I never liked anyway, the

good fortune to run into the ones I do, and the eyesight to tell the

difference.

·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

I think I lost my mind, so watch where you step!

·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

[Guest guest]

You are so welcome...

From: " vze1ortg " <m.lakomec@...>

Reply-Joint Replacement

Date: Tue, 27 May 2003 14:05:04 -0400

<Joint Replacement >

Subject: Re: Digest Number 108

Glen:

You are so sweet to write me a poem. Nobody has ever done that for me. Thank

you so much for making my day.

Carole - AKA Thorn Willowweb, AKA Daisy Proudfoot of Standelf.

God grant me the Senility to forget the people I never liked anyway, the

good fortune to run into the ones I do, and the eyesight to tell the

difference.

·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

I think I lost my mind, so watch where you step!

·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

[Guest guest]

UNSUBSCRIBE ME

>From: Glen Christensen <glenchris@...>

>Reply-Joint Replacement

><Joint Replacement >

>Subject: Re: Digest Number 108

>Date: Tue, 27 May 2003 12:09:51 -0700

>

>You are so welcome...

>

>

>

>From: " vze1ortg " <m.lakomec@...>

>Reply-Joint Replacement

>Date: Tue, 27 May 2003 14:05:04 -0400

><Joint Replacement >

>Subject: Re: Digest Number 108

>

>

>Glen:

>

>You are so sweet to write me a poem. Nobody has ever done that for me.

>Thank

>you so much for making my day.

>

>Carole - AKA Thorn Willowweb, AKA Daisy Proudfoot of Standelf.

>

>God grant me the Senility to forget the people I never liked anyway, the

>good fortune to run into the ones I do, and the eyesight to tell the

>difference.

>·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

> I think I lost my mind, so watch where you step!

> ·.,¸¸,.·´¯`·.,¸¸,.·´¯`·.»§«©©©»§«·.,¸¸,.·´¯`·.,¸¸,.·´¯`·

>

>

>

[Guest guest]

Hi Bonnie,

My SLL has always been " iffy " and originally was thought to be MCL. I

changed oncs at this point and my new onc had two specific tests run that, to

him,

determined it was not MCL. The BCL-1 and the T(11-14). Mine were both

negative, hence the SLL or some variant diagnosis.

To this day though, one of the labs in Seattle, Hematologics, Inc. (I think),

which my original onc used still insists on stating, as their first statement

on every path report, " Patient has a history of Mantle Cell. " I have asked

my current onc not to use them or at least clarify this issue with them. I

just don't want that in my records when it isn't correct.

These two types of NHL are often confused.

Take care,

Sofie