New

[Guest guest]

Hi there!

I don't know of any 'tea' that tastes like 'tea'. However, I personally like licorice tea. This is a really nice one which has a sweet taste w/out the sugar. You can get it tea bags and loose leaf as well.

Hope this helps!

T.

new

hello i have just joined having found you by chance. I have just started and anti-candida diet and its is sooooo Hard!!!! But I am determined to beat this thing that has left me feeling so weak.could someone tell meif it is ok to use arrowroot as a thickening agent. Also, has anyone found an alternative to tea that tastes like tea ????Look forward to talking more.Send blank message to candidiasis-unsubscribeonelist if you want to UNSUBSCRIBE !

[Guest guest]

> So there I was with all these tests, and the doctor saying I have

this

> pbc thing, and filled with " go away thoughts.' And everytime I

visit

> her, she says, you know there is this support group that can help

you.

> I guess I am ready to hear I am not the only person in the world

that

> has pbc. I would like to help someone and maybe be helped too.

Hi Joan

I am not sure where you are located but I found this site for PBC.

http://www.superaje.com/~pbc/index.htm

There is a chat also I found .

I am located in Ontario, Canada.

Lyn

[Guest guest]

Hi : My 28 year old daughter found out she had AIH after having her

son. As a matter of fact we did not know her platelet count was so low after

giving birth until we went back to examine her blood tests. Her OBGYN didn't

bother to tell us anything about it. I know it's not rare to have a low

platelet count at that time but you don't just dismiss it and not say

anything but she did.

I can't answer your question about feeling fine and having AIH because as we

started to look back we found she had small tell tell signs. Feeling tired,

nose bleeds and bruising all of which I told her more than once she needed to

see a doctor about. You know she just thought it was working a full time job

and having a child to take of among the thousand of other things a mother has

to do. She wasn't eating right because she was trying to lose weight.

Anyway look back and see if you haven't been having any of these things.

What finally happened to Jodi for her to be rushed to the hospital was she

had a terrible headache and laid down to take a nap. When she awoke her

abdomen was extended like she was seven months pregnant. That got her

attention and off to the hospital we go where it took five specialist and

three days in the hospital to find she had AIH. You are really lucky that

your primary doctor even knows what AIH is much less knew what to test you

for. The Gastroenterologist is a great place to start but if it is AIH

then please see a Hepatologist.

Good luck and I hope it's not AIH but something easily cured.

Genny/Jodi's Mom

Living Donor Transplant 5-18-01

University of Miami

[Guest guest]

Hi ,

i am a from Long island, NY. Your letter really touched me and I am

so sad for you. I do have to say that i know how you feel. I am 34 years old

and I also have two children, both girls , ages 9 and 14. This disease is so

hard on every one. But, we have to go on. There have been many, many days

when I have woken up too down or afraid or just plain feeling miserable and

just not understood why I should bother going on anymore. Please hang in

there. You have to realize that through all the pain and disappointments that

we must endure there will always be bright spots.(Times when your children

come and sit with you, time alone with your husand, times when you just watch

the sun outside shining through the trees.) What I mean is that of course if

we had a choice we would be doing so many other things but dealing with this

damn disease. Since we don't have a choice, we must go on and see the good

things that we still do have. My advice to you is that you NEED a Lyme

Literate MD immediately. You need to be seeing someone that can help you and

that understands Lyme. I believe you said you had 6 weeks of oral Doxy? You

will need much more than that in order to regain any of your health if you

have late Lyme. I am sure that we can find you a doctor that can help you to

treat the Lyme. Feel free to email me personally or on the group if you would

like to chat. We could even talk on the phone if you would like. Hang in

there, , we are all here for you.

a

_________________________________________________________________

" Do me a favor, doc, tell me something good. " - Blair -

~~ The Exorcist ~~

[Guest guest]

Dear ,

Plese keep the faith ,,, You sound like I did a little while ago. Where

are you located ? I was in very bad stead , I recently started IV rocephin

and I finally feel like a human being. It has only been 8 days and I see a

difference. I am not running marathons but I feel human for the first time in

a long time. I know there is someone on this net who can tell you who is good

with lyme disease. I too am on pain manamgment. I take percoset , selaxin

for muscles spasms, imprimine for sleeping and headahces.. There is a med

called ultram which is helpful but I found it upsets my stomach . This whole

thing is a night mare,, Please hang in there ... I will try to help you any

way I can .. Although there are many on here who are much better equiped with

knowledge . I am new at all this myself .. it is a maze.. one that is not

easy to find your way thru especially when you are ill .. I hope someone

answers you here as well ,, There are also some lyme chat rooms on aol and

,, please check them out ,, I do not have the schedule ,, Also there is

a host of information if you search out lyme disease.. although I know at

this point mentally it maybe hard ,, above all I hope you have some support

and help ,, This bacteria has a life of its own

[Guest guest]

,

Get a Lyme Literate MD, through us or the LDF, at lymefund@... or

(860) 5252000 and a LL Lawyer.

Rita

atthelake@...

[Guest guest]

Correction:

The Lyme Disease Foundation and it's $5 MD referral is at lymefnd.org

Rita

[Guest guest]

In a message dated 10/02/2001 1:07:10 PM Eastern Daylight Time,

wbarbely@... writes:

>

>

> In August I forgot (which is part of the problem) that I did not take my

> medication (or I was just tired of it) I spent 7 days in St. s

> hospital

> in New Brunswick for drug withdrawal. My Dr. treats me like I am a Drug

> Addict and I have so much PAIN. I cant get in to see any Rhems till the

> end

> of the month and I am seeing a Pain management Dr. I am just so tired of

> feeling so ill all the time. I cant work, not that I dont want to, but I

> physical cant do it anymore.

>

Holy cow Did you just go one day without medication???? I'm hoping I don't

have withdrawels from these perkosets. Do you all thnk 3-4 a day would cause

withdrawels? eeeks.

G Jody G

O May you have enough happiness to make you sweet,

enough trials to make you strong,

enough sorrow to keep you human,

enough hope to make you happy. O

' <A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> '

[Guest guest]

Oh I forgot to say Welcome I hope you find some answers here

G Jody G

O May you have enough happiness to make you sweet,

enough trials to make you strong,

enough sorrow to keep you human,

enough hope to make you happy. O

' <A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> '

[Guest guest]

Hi Devie,

I am 33 and have had thyroid since after the birth of my second daughter ne. I gained 40 pounds in a two week period after her birth! (13 years ago) When you asked about Diabetes I too have that and just recently dx past 6 months. Today after my appointment I went to the pharmacy and received my new glucometer. I bought the one from accu-check(last one I had was freestyle) Accu-check is pretty good, it allows you to use your computer to help keep records straight and monitor, lets you keep track of your ketones, and your excersise. Really neat, now I just have to figure out how to use it all.... :} Kinda like a palm pilot of the Diabetes machines.

I have recently started to work out at the gym. I am now up to five minutes on my bike routine hey ya'll that is up from 2 minutes (applause here) Wow am I outta shape. But willing to work on it to get into shape.

Enough for now. Ta Ta

~Devie~ <luvmy5@...> wrote:

Hi I am new to the list. I am almost 28, I have 3 girls Brittany is almost 8, Suzi is 5, and is almost 3. I have been married to for 9 yrs. He is a SSG in the Army. We are living in NC right now but will soon be moving to Florida.

I found out I had hypothyroidism in Sept. I was first tried on 25 mg of Synthroid but had to be changed as it was doing no good so now I am on 50 mg and it seems to be working up until this week I had my energy back and wasn't as moody but in the last week my energy has went so I went to the DR thinking they needed to up my meds again but my THS was way lower then it had been so they did more test and come to find out I am diabetic is the reason for the no energy.

Not sure what eels to say just wanted to introduce myself. It will be nice to talk with other's with the same thing. Is anyone here also a diabetic?

-:¦:- ¸.·´ .·´¨¨)) ((¸¸.·´ ..·´ Devie -:¦:- -:¦:- ((¸¸.·´*Mommy to my 3 girls Brittany 6-15-94Suzi 8-21-96 6-17-99and my 2 angels ^i^Amberleigh 5-4-93 - 7-11-93 (Luekemia)Cory stillborn 7-22-98 (cause unknown)Married to since 10-17-92

The Howell's Homepagehttp://www.geoccities.com/devie5

Visit our Church's webpage <><http://www.fellowshipbaptistch.com

[Guest guest]

I went yesterday and just got the cheap glucose checker that walmart has till I go for my follow up next week then they will give me a good one. I told my DH the other day seems like I am falling apart lately with my thyroid and now this and also went back in today cause I have a kidney stone for the 6th time. Its a good thing he is in the Army and our health care is free or else I would be paying out the butt for all my meds and stuff.

My DR suspects that my thyroid messed up around the time I was pregnant with my 5 yo. Cause I gained so much weight during pregnancy and even after dieting I gained after she was born. Right now I am 75 lbs over weight. I need to get to doing some exercises to get rid of this weight

-:¦:- ¸.·´ .·´¨¨)) ((¸¸.·´ ..·´ Devie -:¦:- -:¦:- ((¸¸.·´*Mommy to my 3 girls Brittany 6-15-94Suzi 8-21-96 6-17-99and my 2 angels ^i^Amberleigh 5-4-93 - 7-11-93 (Luekemia)Cory stillborn 7-22-98 (cause unknown)Married to since 10-17-92

The Howell's Homepagehttp://www.geoccities.com/devie5

Visit our Church's webpage <><http://www.fellowshipbaptistch.com

Re: new

Hi Devie, I am 33 and have had thyroid since after the birth of my second daughter ne. I gained 40 pounds in a two week period after her birth! (13 years ago) When you asked about Diabetes I too have that and just recently dx past 6 months. Today after my appointment I went to the pharmacy and received my new glucometer. I bought the one from accu-check(last one I had was freestyle) Accu-check is pretty good, it allows you to use your computer to help keep records straight and monitor, lets you keep track of your ketones, and your excersise. Really neat, now I just have to figure out how to use it all.... :} Kinda like a palm pilot of the Diabetes machines. I have recently started to work out at the gym. I am now up to five minutes on my bike routine hey ya'll that is up from 2 minutes (applause here) Wow am I outta shape. But willing to work on it to get into shape. Enough for now. Ta Ta ~Devie~ <luvmy5@...> wrote:

Hi I am new to the list. I am almost 28, I have 3 girls Brittany is almost 8, Suzi is 5, and is almost 3. I have been married to for 9 yrs. He is a SSG in the Army. We are living in NC right now but will soon be moving to Florida.

I found out I had hypothyroidism in Sept. I was first tried on 25 mg of Synthroid but had to be changed as it was doing no good so now I am on 50 mg and it seems to be working up until this week I had my energy back and wasn't as moody but in the last week my energy has went so I went to the DR thinking they needed to up my meds again but my THS was way lower then it had been so they did more test and come to find out I am diabetic is the reason for the no energy.

Not sure what eels to say just wanted to introduce myself. It will be nice to talk with other's with the same thing. Is anyone here also a diabetic?

-:¦:- ¸.·´ .·´¨¨)) ((¸¸.·´ ..·´ Devie -:¦:- -:¦:- ((¸¸.·´*Mommy to my 3 girls Brittany 6-15-94Suzi 8-21-96 6-17-99and my 2 angels ^i^Amberleigh 5-4-93 - 7-11-93 (Luekemia)Cory stillborn 7-22-98 (cause unknown)Married to since 10-17-92

The Howell's Homepagehttp://www.geoccities.com/devie5

Visit our Church's webpage <><http://www.fellowshipbaptistch.com

[Guest guest]

congrats......i cant wait to be able to go back to the

gym....miss the sweating...NOT....but i did feel

better when i was leaving there..>LOL

--- wendy santee <wendysantee@...> wrote:

>

> Hi Devie,

> I am 33 and have had thyroid since after the birth

> of my second daughter ne. I gained 40 pounds in

> a two week period after her birth! (13 years ago)

> When you asked about Diabetes I too have that and

> just recently dx past 6 months. Today after my

> appointment I went to the pharmacy and received my

> new glucometer. I bought the one from

> accu-check(last one I had was freestyle) Accu-check

> is pretty good, it allows you to use your computer

> to help keep records straight and monitor, lets you

> keep track of your ketones, and your excersise.

> Really neat, now I just have to figure out how to

> use it all.... :} Kinda like a palm pilot of the

> Diabetes machines.

> I have recently started to work out at the gym. I

> am now up to five minutes on my bike routine hey

> ya'll that is up from 2 minutes (applause here) Wow

> am I outta shape. But willing to work on it to get

> into shape.

> Enough for now. Ta Ta

>

> ~Devie~ <luvmy5@...> wrote: Hi I am new to

> the list. I am almost 28, I have 3 girls Brittany is

> almost 8, Suzi is 5, and is almost 3. I have

> been married to for 9 yrs. He is a SSG in

> the Army. We are living in NC right now but will

> soon be moving to Florida. I found out I had

> hypothyroidism in Sept. I was first tried on 25 mg

> of Synthroid but had to be changed as it was doing

> no good so now I am on 50 mg and it seems to be

> working up until this week I had my energy back and

> wasn't as moody but in the last week my energy has

> went so I went to the DR thinking they needed to up

> my meds again but my THS was way lower then it had

> been so they did more test and come to find out I am

> diabetic is the reason for the no energy. Not sure

> what eels to say just wanted to introduce myself. It

> will be nice to talk with other's with the same

> thing. Is anyone here also a diabetic?

> -:¦:-

> ¸.·´ .·´¨¨))

> ((¸¸.·´ ..·´ Devie -:¦:-

> -:¦:- ((¸¸.·´*

> Mommy to my 3 girls

> Brittany 6-15-94

> Suzi 8-21-96

> 6-17-99

> and my 2 angels ^i^

> Amberleigh 5-4-93 - 7-11-93 (Luekemia)

> Cory stillborn 7-22-98 (cause unknown)

> Married to since 10-17-92 The Howell's

> Homepage

> http://www.geoccities.com/devie5 Visit our Church's

> webpage <><

> http://www.fellowshipbaptistch.com

>

[Guest guest]

I love to walk and swim and sometimes I even find the

time to learn this new machine that is low impact... I

will find out the name of it when I get to the

gym..(it is like you are walking and skiing at the

same time)

Tough to lose weight I have lost 3 pounds since

September and it isn't that much weight- I want to do

that in a week! hehehe

Later! : }

--- ~Devie~ <luvmy5@...> wrote:

> I went yesterday and just got the cheap glucose

> checker that walmart has till I go for my follow up

> next week then they will give me a good one. I told

> my DH the other day seems like I am falling apart

> lately with my thyroid and now this and also went

> back in today cause I have a kidney stone for the

> 6th time. Its a good thing he is in the Army and our

> health care is free or else I would be paying out

> the butt for all my meds and stuff.

>

> My DR suspects that my thyroid messed up around the

> time I was pregnant with my 5 yo. Cause I gained so

> much weight during pregnancy and even after dieting

> I gained after she was born. Right now I am 75 lbs

> over weight. I need to get to doing some exercises

> to get rid of this weight

> -:|:-

> ¸.·´ .·´¨¨))

> ((¸¸.·´ ..·´ Devie -:|:-

> -:|:- ((¸¸.·´*

> Mommy to my 3 girls

> Brittany 6-15-94

> Suzi 8-21-96

> 6-17-99

> and my 2 angels ^i^

> Amberleigh 5-4-93 - 7-11-93 (Luekemia)

> Cory stillborn 7-22-98 (cause unknown)

> Married to since 10-17-92

>

> The Howell's Homepage

> http://www.geoccities.com/devie5

>

> Visit our Church's webpage <><

> http://www.fellowshipbaptistch.com

> Re: new

>

>

> Hi Devie,

>

> I am 33 and have had thyroid since after the birth

> of my second daughter ne. I gained 40 pounds in

> a two week period after her birth! (13 years ago)

> When you asked about Diabetes I too have that and

> just recently dx past 6 months. Today after my

> appointment I went to the pharmacy and received my

> new glucometer. I bought the one from

> accu-check(last one I had was freestyle) Accu-check

> is pretty good, it allows you to use your computer

> to help keep records straight and monitor, lets you

> keep track of your ketones, and your excersise.

> Really neat, now I just have to figure out how to

> use it all.... :} Kinda like a palm pilot of the

> Diabetes machines.

>

> I have recently started to work out at the gym. I

> am now up to five minutes on my bike routine hey

> ya'll that is up from 2 minutes (applause here) Wow

> am I outta shape. But willing to work on it to get

> into shape.

>

> Enough for now. Ta Ta

>

>

>

> ~Devie~ <luvmy5@...> wrote:

>

> Hi I am new to the list. I am almost 28, I have

> 3 girls Brittany is almost 8, Suzi is 5, and

> is almost 3. I have been married to for 9

> yrs. He is a SSG in the Army. We are living in NC

> right now but will soon be moving to Florida.

>

> I found out I had hypothyroidism in Sept. I was

> first tried on 25 mg of Synthroid but had to be

> changed as it was doing no good so now I am on 50 mg

> and it seems to be working up until this week I had

> my energy back and wasn't as moody but in the last

> week my energy has went so I went to the DR thinking

> they needed to up my meds again but my THS was way

> lower then it had been so they did more test and

> come to find out I am diabetic is the reason for the

> no energy.

>

> Not sure what eels to say just wanted to

> introduce myself. It will be nice to talk with

> other's with the same thing. Is anyone here also a

> diabetic?

> -:|:-

> ¸.·´ .·´¨¨))

> ((¸¸.·´ ..·´ Devie -:|:-

> -:|:- ((¸¸.·´*

> Mommy to my 3 girls

> Brittany 6-15-94

> Suzi 8-21-96

> 6-17-99

> and my 2 angels ^i^

> Amberleigh 5-4-93 - 7-11-93 (Luekemia)

> Cory stillborn 7-22-98 (cause unknown)

> Married to since 10-17-92

>

> The Howell's Homepage

> http://www.geoccities.com/devie5

>

> Visit our Church's webpage <><

> http://www.fellowshipbaptistch.com

>

>

>

[Guest guest]

Hi, Dexie,

I am also new to the group. This is my first message, but I really

think the purpose of these groups is to let each other know we are

not alone. YOU are not alone. I was diagnosed with hypothyroidism,

insulin resistance, PCOD, stage 3 endometriosis, and hidradenitis

suppurativa all within a matter of months. I am one of those cases

where the autoimmune diseases have taken over, but knowing that I'm

not alone and trying to maintain my sense of humor help

tremendously. I am now going to be working with an

internist/endocrinologist to get to the bottom of a few other

problems that I have going on and hopefully will be on the road to

recovery soon!

Anyway, I wish you the best of luck with your health and please keep

us posted.

Health, Happiness, and Pain free days!

[Guest guest]

Thanx . It does help knowing there are others out there and your not

along. List like this are so wonderful.

I went back to the DR yesterday they checked my sugar again and said they

would call me and let me know but the first thing is to get the kidney

stones taking care of first.

If its not one thing with me its another..LOL and my dad is doing bad he has

cancer and not much longer to live. Its very stressful for me not to be able

to be close to him. (Parents live in Alabama, I live in NC) . I just pray he

holds out until we get to go home this summer. We will be moving closer this

summer and I can't wait.

Hope you find out what you want and fix everything that they can. I will

keep you and everyone else in my prayers!

-:¦:-

¸.·´ .·´¨¨))

((¸¸.·´ ..·´ Devie -:¦:-

-:¦:- ((¸¸.·´*

Mommy to my 3 girls

Brittany 6-15-94

Suzi 8-21-96

6-17-99

and my 2 angels ^i^

Amberleigh 5-4-93 - 7-11-93 (Luekemia)

Cory stillborn 7-22-98 (cause unknown)

Married to since 10-17-92

The Howell's Homepage

http://www.geoccities.com/devie5

Visit our Church's webpage <><

http://www.fellowshipbaptistch.com

Re: new

> Hi, Dexie,

> I am also new to the group. This is my first message, but I really

> think the purpose of these groups is to let each other know we are

> not alone. YOU are not alone. I was diagnosed with hypothyroidism,

> insulin resistance, PCOD, stage 3 endometriosis, and hidradenitis

> suppurativa all within a matter of months. I am one of those cases

> where the autoimmune diseases have taken over, but knowing that I'm

> not alone and trying to maintain my sense of humor help

> tremendously. I am now going to be working with an

> internist/endocrinologist to get to the bottom of a few other

> problems that I have going on and hopefully will be on the road to

> recovery soon!

> Anyway, I wish you the best of luck with your health and please keep

> us posted.

>

> Health, Happiness, and Pain free days!

>

>

>

>

>

>

>

[Guest guest]

Hey Gail welcome there is some good people on this line. Ladonna

[Guest guest]

Hi Jan--your " numbers " are very hypothyroid. You should find someone who

will give you thyroid medicine. Tsh test doesn't mean much, except doctors

like it.

Gracia

> Hi I am new!

>

> I am a 41 year old female living in California.

>

> I was looking at my TSH values for the last 4 years....The lowest

> is 3 and my most recent was the highest 6.44

>

> Estradiol very high

> Progesterone low

> DHEA low normal

> testosterone low

>

> My doc prescibed DHEA and Progesterone compounded creams.

>

> I have seen many doctors and specialists and no one has ever

> given a diagnosis of HYPO but I have symptoms of low body temp,

> dry hair and skin, GI problems, insomnia.

>

> I am also hypertensive and am having a hard time gaining weight so I

> am a bit confused because aren't these sypmtoms of HYPER?

>

> Any help in this matter is greatly appreciated !

>

> -Jan

>

>

>

>

[Guest guest]

Jan,

Have you seen an endocrinologist? Usually an endocrinologist is more

adept at diagnosing thyroid disorders. Most of your symptoms would go

with hypothyroidism. What kinds of tests have been used by the doctors

you've seen so far?

Celeste

Jan wrote:

> Hi I am new!

>

> I am a 41 year old female living in California.

>

> I was looking at my TSH values for the last 4 years....The lowest

> is 3 and my most recent was the highest 6.44

>

> Estradiol very high

> Progesterone low

> DHEA low normal

> testosterone low

>

> My doc prescibed DHEA and Progesterone compounded creams.

>

> I have seen many doctors and specialists and no one has ever

> given a diagnosis of HYPO but I have symptoms of low body temp,

> dry hair and skin, GI problems, insomnia.

>

> I am also hypertensive and am having a hard time gaining weight so I

> am a bit confused because aren't these sypmtoms of HYPER?

>

[Guest guest]

In a message dated 03/24/2002 3:01:34 PM Pacific Standard Time, skysailor@... writes:

I have seen many doctors and specialists and no one has ever

given a diagnosis of HYPO but I have symptoms of low body temp,

dry hair and skin, GI problems, insomnia.

Hi Jan,

I agree with Gracia, your symptoms are very hypo, including the low body weight. With your low body temp and supposedly normal TSH tests, you should read www.wilsonsthyroidsyndrome.com. It sounds to me like you could be a match to it.

in LA

"We are each responsible for our own life--no other person is or even *can* be." Oprah Winfrey

[Guest guest]

In a message dated 03/24/2002 3:01:34 PM Pacific Standard Time, skysailor@... writes:

Hi I am new!

I am a 41 year old female living in California.

I was looking at my TSH values for the last 4 years....The lowest

is 3 and my most recent was the highest 6.44

Hi Jan,

Are you getting the mail from the hypolthyroidism group? I'm just wondering b/c I saw you posted again an email that was pretty similar to your first post. Some people have responded, too, but if there's a problem with getting the list mail, you wouldn't have known that. If you're not receiving mail, you can read it from the web at www. or best thing is to write to technical support there and tell them your problem. Sometimes when I start a new group it takes them awhile to get the mail going to your server.

Anyway, Welcome! I hope you get some good ideas and get feeling better soon!

in LA

"We are each responsible for our own life--no other person is or even *can* be." Oprah Winfrey

[Guest guest]

Hi Newbie...

Please tell us your name...it is easier to write to people when we know their name...

and let us know a little bit about you....this is a large group and we all love to get to know each other the best we can...so we can help the best when needed...

As far as your husband...one thing he can do is get on here and talk to others who are in the same situation...although if he is not interested...don't be surprised....there are alot of caregivers here....for their husbands and wives...and children...and friends...

I am a caregiver...it is my son who has PSC...he is now 19....have been with this group since almost the beginning about 4 yrs...My son was first diagnosed with Crohns at 9 and other auto-immune diseases have been added since...He has had good times and very bad times...right now is a pretty good time...

Have they started any meds yet...and what tests have they done....if they have started meds...then maybe just getting used to them can cause an appetite difference...if he is depressed he needs to talk to others....even just reading here might help...he doesn't have to write...we have alot of lurkers...

diet...just eat good food...of course drinking to excess would not be a good idea...some people say that their doctors say a little drinking is ok...some say none...it is a question he should ask his doctor...

I hope to hear from you ...and learn a little bit more about you and your husband...

we have had a couple of transplants here in the last couple of months...and right now everyone is doing really well...

take care and talk soon

Luanne Ty's mom

[Guest guest]

Hello!

Sorry to hear about your Husband's diagnosis. Right after diagnosis

depression is very normal however is important to keep it under control

if possible since it could have an affect on him. I was placed on anti-depressives almost immediately after diagnosis and they have helped

me. I also receive a lot of support here and from my pastor and that

definetly has helped me. Being right by his side as I know you are already doing will help him a lot, been extremely nice to the liver by keeping a good diet also will help. Your md can give you a lot of advice

on all these issues as well as our members here but he must keep going because things will get better. I will keep him and your family on my prayers. God Bless You !

TONY

[Guest guest]

Hi Luann Ty's Mom,

Thank you for responding to my request for help. I have never joined a chat room before and do not know the ins and outs. My desire to find information and support outweighs my shyness to jump in. I guess I will learn as I go.

My name is and my husband's name is . We have two children, 11 and 6. We live in the Los Angeles area, which I have been told is a good thing now, because my husband will need a transplant and we live close to UCLA which is supposedly a premiere hospital in this country.

My husband tried to get life insurance because he is traveling so much with his new job. I am nervous about him flying because I lost my father when I was 20 to a plane crash. When he applied, they denied him because he had elevated liver enzymes. That is how all of this started. He has been through a CAT Scan, 2 liver biopsies and now they want to do an ECRP, I think that is what it is called (down the throat with a scope and camera into the bile ducts). They can not determine the cause of his liver scarring, everything has been ruled out except for the PSC. The CAT Scan showed there was an abnormal area, so on the first biopsy they went straight to that area. The report came back that is was a large tumor but it was benign. Because they only biopsied that area, they had to go back in and sample more liver tissue. The second biopsy showed scarring although we do not know how much or at what stage he is in. The doctor here said he has an average of 5 to 10 years before he will need a liver transplant. We are in a state of shock. I am scared that he has to get sick before they will put him on a transplant list. He is such a sweet, kind man. I can't believe this is happening. I am worried he will never get the transplant, he will die before seeing his children marry, he will die before having grand kids. He is a family man, these things are important to him, to us. We don't talk about these things but we both know that is what is making us sad.

He has a very demanding job. He has to be very aggressive and he feels he is losing the edge he needs to do his job because he is depressed. All he wants to do is be home with us. He is sole supporter, he makes enough money so I can stay home with the kids. If he doesn't work, we are all in trouble. I know this is bothering him too.

He is not on any meds yet. I don't know why his doctor hasn't started him on Actigall, it think that is the name. We are trying to reach the doctor today and ask why. Are there any new treatments or drugs to slow the progression of cirrhosis?

How long has your son been diagnosed with PSC? What are symptoms of the disease? What happens on the bad days? How do you get him through it?

Re: [ ] New

Hi Newbie... Please tell us your name...it is easier to write to people when we know their name... and let us know a little bit about you....this is a large group and we all love to get to know each other the best we can...so we can help the best when needed... As far as your husband...one thing he can do is get on here and talk to others who are in the same situation...although if he is not interested...don't be surprised....there are alot of caregivers here....for their husbands and wives...and children...and friends... I am a caregiver...it is my son who has PSC...he is now 19....have been with this group since almost the beginning about 4 yrs...My son was first diagnosed with Crohns at 9 and other auto-immune diseases have been added since...He has had good times and very bad times...right now is a pretty good time... Have they started any meds yet...and what tests have they done....if they have started meds...then maybe just getting used to them can cause an appetite difference...if he is depressed he needs to talk to others....even just reading here might help...he doesn't have to write...we have alot of lurkers... diet...just eat good food...of course drinking to excess would not be a good idea...some people say that their doctors say a little drinking is ok...some say none...it is a question he should ask his doctor... I hope to hear from you ...and learn a little bit more about you and your husband... we have had a couple of transplants here in the last couple of months...and right now everyone is doing really well... take care and talk soon Luanne Ty's mom

[Guest guest]

Hi, I'm new to the group - I'm so excited to find a group like this, I've

had P for about 12 years and PA for the past 5 years, Here's what I'm taking:

15mg of MTX a week 15 mg of Mobic, 2 ultracet's a day and here's something

that is helping to: MSM 3000mg a day along with chewable Vit. C and at night

I mix a powder of CalMag.

I see a Chiro. once or twice a week, and a theraputic Massage every other

week (this is not a buff & puff massage!! & it's not for the weak. lol) I'll

be going to physcial therpy starting next week. I'm not a whimp and I've

always been very independent.

so this is a tough thing to deal with. I own a Retail Sewing Business so I

gotta feel like smiling. I had foot surgery last sept. and well it's still

healing. I've got a Wonderful Husband and that helps the most.

Thanks for such a wonderful Group.

Jan

[Guest guest]

hello and welcome to all new folk

I am struck by the mention of massage and curious about the after effects. I

guess I am a bit of a chicken about the idea of revving up circulation being

a little too close to kicking up inflammation. If I have trouble after over

exerting a joint, how is that different that deep tissue massage (circulation

wise)?

Have others benefited from massage therapy? The idea of massage is extremely

attractive but I have been shying away from releasing toxins etc. Any

thoughts?