I need help

[Guest guest]

, yes this disease can be very hard and the medications are not always

good for us but without them the outcome can be very dangerous as your friend

may be finding out with his internal organs involved. Without medications the

Stills can cripple you with irreversible joint damage as well as the internal

factors. Please advise Wes to find a doctor he can trust and talk with. From

what you have told us this is very serious and needs medical attention and yes,

sometimes hospital stays. I've only heard of medications to bring it into

remission with such a serious case. I am not a doctor but offer this advise as

a Stills patient for almost 30 years now and a very bad onset. Today I am not

crippled and live a pretty normal life but this is only because I trusted my

doctors with my treatment all these years. Please know I am thinking of you and

Wes and hoping he finds help. Good evening to you, Melt

I need help

I need some help.

[Guest guest]

Hi.

I was in really bad shape before I was diagnosed. It took 2 years

and the Mayo Clinic for me to get the diagnosis of Stills.

I have to take the steriods and the other meds that I think are very

dangerous, but my life has definitely improved drastically with

these medications. You just have to be vigilant about getting

regular blood work done to monitor the effects on your body.

Your friend is very fortunate to get such a quick diagnosis of

Stills, if it is indeed Stills. From what you say about his

symptoms, it certainly sounds right on target.

The one thing that I thought about when reading your post is the

part about your friend being so obstinate about the doctors and

not willing to accept the diagnosis. Like him saying that the

doctors just looked for the rash, because they wanted to find a

rash. I've dealt with some idiotic doctors, but there are some

really good ones out there, too. But the main thing here that I

want to mention is this: when I was so terribly ill like he is now,

my mind was not functioning properly. The doctors at Mayo even

said that the Stills was affecting my thinking process. I was

obstinate, too. I didn't even know that I was being this way. Now

that I am on the meds and am improving so much, I can see that

I wasn't thinking clearly then. Now I am. Has he always

dismissed doctors like he is now? Anyway, just a thought.

I hope you can get him to come around. He needs medical

attention. He will get worse. When I was finally diagnosed (it

was about one year ago), I was at the point where I barely could

walk. Pretty much couldn't walk at all.

As I said, if he has Stills, it's going to become a nightmare soon

for him if he doesn't trust the doctors and accept the fact that he

has Stills. It's not a death sentence. It can't be cured, but it can

be managed and he can lead a fairly normal life - - - but only if he

does something soon. This disease gets progressively worse if

left untreated. The sooner he accepts this, the sooner he'll start

getting better. Also, with treatment it's not an instant recovery. It

has taken me months, well almost a full year, to function at a

fairly normal level again. And, even now, I have days when I'm in

a lot of pain and feel excruiatingly fatigued.

You're a great friend to help him by posting and showing your

concern. I had a friend like this, too. If it hadn't been for her, I

believe that I wouldn't have made it and would have died.

My best to you. Don't give up on him. I know it takes a lot of your

energy and stresses you to deal with this. It certainly stressed

my friend, , but she was relentless. And because of her,

I'm still here.

Love to you, Welynda

[Guest guest]

Wes,

I admire you so for sticking by your friend, so many of us have lost friends

due to our disease. Thank you for being such a great human being. I am in

West Central Wisconsin about 6 hrs north of you, the best advice I can give

on doctors is that you are not far from the Mayo Clinic in Rochester, MN.

You can call them directly and if you friend has insurance it should not be

a problem. I was seen there for another condition in 1996 and I did not

need a referral, just called them and they took me right away. I know

another one of our Wisconsin members travels there for her care.

Tell your friend we are here for him if he wants or needs support and advice

Lynn

-- I need help

I need some help. I will try to explain the situation and see if

anybody can give me some insight to help my friend. I will try to tell

the story as I remember it, combined with some notes about his disease

that I came up with from another friend who was trying to follow the

events at the time. This description is incomplete and goes only to

the extent I get from the notes and what I can remember myself.

I have a friend, Wes now in Chicago, that felt sick last year (04) at

the beginning of September, he had never been sick before (not even

the flu at least since he came from Poland when he was 15 years old).

He is 28 years old. I was out of the state (IL) at the time; I tried

to keep in contact by phone. Initially he thought it was a cold or

flu, and postponed going to the hospital for several weeks. Finally he

was doing pretty bad and went to a local hospital. As of Oct 4 in the

hospital he had elevated white cells count, and racing heart. His

cultures came negative except for one with staph. Standard test for

lupus was negative. They thought it was an infection and tried to

treat him with penicillin.

By Oct 19, he had some thrombotic or thrombocytopenic purpura (TTP),

and acute renal condition and were suspecting Still's or other

autoimmune disorder. By Oct 22, they thought it was definitively

Still's, his levels of Li, Cu, and Cd were lower than normal, and he

was stable.

In Oct 24, he was doing much worse, everything was failing, he had

trouble breathing and he was put on oxygen. The renal function had

stabilized, and he was being given it seems cytokan(?) and

cyclophosaphide(?).

In Oct 25, he improving but developed TPP, he was getting therapy for

plates, anemia, kidneys, liver function. His voice got hoarse from the

vocal cords being paralyzed. His breathing improved, they were still

watching his heart. They were doing plasmaphoresis, and after that

week they were going to do it every other day for 2-3 weeks. I seem to

remember that when they started the plasmaphoresis his heart finally

slowed down (to ~110(?)), and Wes was finally feeling better.

In Nov 11, he was getting better, but was still swollen, his kidneys

were letting proteins pass. At least he had no pain, he was off the

oxygen. His heart was fast 150-160's, there was an inflammation of his

heart. The blood was stable. He was on medications for heart, kidney,

calcium, and Lasix.

Some time later, they resorted to plasma exchange; there was fluid

outside heart. He was loosing protein in the urine. And a new

complication: He developed a clot in the left leg. I think at this

time Wes was having already friction with the medical staff he missed

some prednisone. Before thanksgiving last year he left the hospital

and went home against doctors advice.

I think in total he was hospitalized for about 7 weeks in the

University of Chicago Hospital. I know they seem to have tried several

medication approaches, at some point giving him massive amounts of

steroids. I think up to 1 gram. I know at some point they gave him

drugs like the ones are used to treat leukemia in lower doses than

used to treat leukemia patients (nevertheless dangerous poisons), the

idea was to try to " knock down " his immune system so that it will stop

attacking his own organs and concentrate in the foreign element.

In any case, my friend developed other conditions, which he doesn't

know if were related to the original problem, like a blood clot, and

blurry vision.

It seems that the doctors were not talking enough to him, or they

didn't discussed the possible secondary effects that massive amounts

of medications would do to him. Triggering his decision to leave

before Thanksgiving.

At that time he could walk, and there was some time in January when he

was feeling better and could even drive a little around. At the time,

he was weaning himself out of prednisone, which he considers to be the

main cause of all his problems. He thinks he was misdiagnosed, and

that the massive amounts of prednisone caused the onset of all other

conditions was due to the overmedications.

In any case, the thing is that he is at home now. He refuses to take

steroids, but it seems his condition is getting worse. A few weeks

back I visited him and he could walk, back then I suggested him to go

to the hospital and check his blood and see what was wrong with his

legs. He returned to the hospital for less than a week (I believe the

last week of February) and they gave him Lasix trying to decrease the

swelling of his legs, but he left the hospital again. And now he can't

walk at all.

I know I am painting an incomplete picture, I am writing mainly of the

things I remember. I was wondering if you guys could give me some idea

of what will happen if he doesn't treat Still's disease. And maybe

shed some light about the effect of huge doses of steroids. I know Wes

doesn't want to listen to the doctors. Every time he talks to a doctor

they want him to stay in the hospital, and he hates that advise. He

blames going to the hospital for his actual condition, he thinks that

if he had never gone to the hospital he would have been perfectly fine

after some time. I think his main concern is that if he goes to the

hospital they will give him some much over medication that they will

kill him with something else. Like the case with the clot, which at

this moment can give him a heart attack, or a stroke.

Besides he thinks the doctors really messed up the diagnostic and he

is convinced he doesn't have Still's disease. I was wondering if maybe

some of your opinions can help him to see things the doctor's way, OR

if he is right and he doesn't have Still's maybe better guide him of

how to better take care of himself. To be fair, I don't consider

impossible for the doctors to make mistakes and have made a wrong

diagnostic. Which remind me, he mention that his rash was very mild,

he thinks the doctors found it just because they wanted to find it.

Although taking with a friend that was present in the hospital at the

time, he told me an old doctor was giving a class and pointed to his

students the case as a classic case of Still's with 8 symptoms. Again,

Wes thinks the doctor was just seeing what he wanted to see and that

he is not sick with Still's but just a victim of over medication and

wrong treatment.

I wish for him either to decide if he has the disease and will treat

it with all drugs however dangerous (the double edge sword that

somebody had mentioned) or if he doesn't have Still's and just need to

rest at home. My hope is that Wes will read this e-mail or maybe his

sister will print some of your responses and show them to him.

Hopefully that might help him somehow. He doesn't trust in doctors

that don't even know what causes Still, but I am afraid of what could

happen if he has Still's doesn't treat it properly.

I also would like to know if somebody knows a good doctor in the

Chicago area who has experience with Still's disease, and who is

compassionate and patient enough to listen to him and discuss matters

with him. I know Wes doesn't want to see any more doctors, he doesn't

trust them… I don't know. Any ideas? Any thing that could help?

Thank you very much.

H.

[Guest guest]

Thank you very much Melt, Welynda, Lynn, Gita, Louise, and Lissah for

your messages and recomendations. I went to visit my friend Wes today.

It seems he is starting to accept that he might have Still's. I

appreciate particularly your recomendations of doctors in Chicago, I

will try to get him to visit one next week. Although, it seems his

family don't want him to see anybody. I don't know what to do now, he

wants to see the doctor, but antagonizing his family seems not

advisable... we'll see.

I have kind of a question or your opinion, right now Wes can't get up

of bed, and need some help to turn around in bed or recline. When I

got there he was alone at home, he is close to the front door (3ft or

so) he couldn't open, I had to wait outside until his sisters came

home. His legs are badly swollen, when I helped him to turn in his bed

I grabbed his legs (softly) my fingers sunk about 1cm in his muscles,

and left marks like a foam mold. The marks stayed like crevices in his

legs and to tell the truth it caused me quite an impression. Wes is

weighting 140lb and what I thought was muscle tone is actually water,

he is retaining liquids badly. He told me the Lasix is not working

anymore at all. He is not taking any drugs at the moment, does this

sounds like Still's when left untreated or might it be that he does

have something else? Thanks you very much for any help or advice you

can give me.

H.

[Guest guest]

Hi

These are really questions that only a qualified doctor can answer

for Wes. Your friend seems pretty sick from what you're describing.

If Wes is that sick and his family doesn't want him to see a doctor

then obviously theres some kinda disfunction. If he's that sick he

needs medical attention and his family should either be supportive

or get out of the way.

melissa

> Thank you very much Melt, Welynda, Lynn, Gita, Louise, and Lissah

for

> your messages and recomendations. I went to visit my friend Wes

today.

> It seems he is starting to accept that he might have Still's. I

> appreciate particularly your recomendations of doctors in Chicago,

I

> will try to get him to visit one next week. Although, it seems his

> family don't want him to see anybody. I don't know what to do now,

he

> wants to see the doctor, but antagonizing his family seems not

> advisable... we'll see.

>

> I have kind of a question or your opinion, right now Wes can't get

up

> of bed, and need some help to turn around in bed or recline. When I

> got there he was alone at home, he is close to the front door (3ft

or

> so) he couldn't open, I had to wait outside until his sisters came

> home. His legs are badly swollen, when I helped him to turn in his

bed

> I grabbed his legs (softly) my fingers sunk about 1cm in his

muscles,

> and left marks like a foam mold. The marks stayed like crevices in

his

> legs and to tell the truth it caused me quite an impression. Wes is

> weighting 140lb and what I thought was muscle tone is actually

water,

> he is retaining liquids badly. He told me the Lasix is not working

> anymore at all. He is not taking any drugs at the moment, does this

> sounds like Still's when left untreated or might it be that he does

> have something else? Thanks you very much for any help or advice

you

> can give me.

>

> H.

[Guest guest]

Wes really needs to be in hospital it sounds like. Please convince his family

to let him get help. Good luck Melt

----- Original Message -----

[Guest guest]

Hello ,

You are a wonderful friend for Wes and it sounds like that is just what

he needs. One thing that might help everyone in this situation is to

pass out some brochures to his family that our International Stills

Disease Foundation can send you at no cost [a small donation for postage

is always helpful.] These pamphlets have a lot of information that is

very helpful for folks just learning about Still Disease, it explains

the importance of treatment also. You can get them by request from our

Treasurer, Bob Himes, at: _oldgoat378@...

_Good luck to you and Wes, Louise.

Wes Olczak wrote:

>appreciate particularly your recomendations of doctors in Chicago, I

>will try to get him to visit one next week. Although, it seems his

>family don't want him to see anybody. I don't know what to do now, he

>wants to see the doctor, but antagonizing his family seems not

>advisable... we'll see.

>

>I have kind of a question or your opinion, right now Wes can't get up

>of bed, and need some help to turn around in bed or recline. When I

>got there he was alone at home, he is close to the front door (3ft or

>so) he couldn't open, I had to wait outside until his sisters came

>home. His legs are badly swollen, when I helped him to turn in his bed

>I grabbed his legs (softly) my fingers sunk about 1cm in his muscles,

>and left marks like a foam mold. The marks stayed like crevices in his

>legs and to tell the truth it caused me quite an impression. Wes is

>weighting 140lb and what I thought was muscle tone is actually water,

>he is retaining liquids badly. He told me the Lasix is not working

>anymore at all. He is not taking any drugs at the moment, does this

>sounds like Still's when left untreated or might it be that he does

>have something else? Thanks you very much for any help or advice you

>can give me.

>

> H.

>

>

>

[Guest guest]

Hi Gena, Welcome to the family. We may be a little nutty but we all know what you're going through & we're here for you when you need us. I'm SuZie, 58 year old single woman living in the GWN(Great White North - Thunder Bay, Ont. Canada) I've had hep c since 1969 I think & am now in ESLD(end stage liver disease) waiting for a transplant. Like you, I've been through tx(treatment) twice & didn't respond but both my tx were in the early 90s & just involved interferon & ribivirin. First of all, try to calm down. We've got a lot of people here who've been where you are & lots of support to offer you, that's what we're

here for sweetie. If you have any questions, ask them. If you just want an ear to listen, we're all interested & listening. We'll tell you how we've handled things, give you advice, cry with you if that's what you need. Join in & let us know how you're doing. Hugs, SuZie & Sir SpYke the Fuzzy, GOT (Galactic Overlord in Training), master of all he surveys & King of Fluffy Sympathy aka my little fuzzy kittyGena wrote: Help me please .I've had hep C for 5 yrs. I have been through peg and ribo tx with no success. I am a mother of 3 and I already in Stage 3. I don't know how much longer I can hang on to my sanity. I have noone that understands what I'm going through. I just need someone I can talk to that nows what I am going through, Never miss a thing. Make Yahoo your homepage.

Next time I'm coming back as a cat

[Guest guest]

Hi Gena We are all in different stages of hep c here. But most of us have gone through some really hard times while having and maybe even because of it. It is a hard things to learn to deal with but we all have to. It hard to talk to people who dont know whats going on with you because most of the time you will look and act fine but you might be very ill at that time. My friends will always ask whats wrong. When I am really tired, nausea or something is going on from the hep. They always say you look fine or sound fine but you are rght they dont understand. We dummies do understand and are always here to talk. I dont always post but I am here for you just as much as anyone. Maybe there is another tx or trying it again might work. I know different things work for different people. If you are really depressed because of this please talk with your dr. There are ways to help manage the hep. I hope I helped some. DGena

wrote: Help me please .I've had hep C for 5 yrs. I have been through peg and ribo tx with no success. I am a mother of 3 and I already in Stage 3. I don't know how much longer I can hang on to my sanity. I have noone that understands what I'm going through. I just need someone I can talk to that nows what I am going through, Never miss a thing. Make Yahoo your homepage.

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

I am 1a 3rd stage with viral load of 324555 it scares me because I used to be in a chat room and now can't find one in Yahoo. It was a lifesaver some days and today is one of those days....suzie wrote: Hi Gena, Welcome to the family. We may be a little nutty but we all know what you're going through & we're here

for you when you need us. I'm SuZie, 58 year old single woman living in the GWN(Great White North - Thunder Bay, Ont. Canada) I've had hep c since 1969 I think & am now in ESLD(end stage liver disease) waiting for a transplant. Like you, I've been through tx(treatment) twice & didn't respond but both my tx were in the early 90s & just involved interferon & ribivirin. First of all, try to calm down. We've got a lot of people here who've been where you are & lots of support to offer you, that's what we're here for sweetie. If you have any questions, ask them. If you just want an ear to listen, we're all interested & listening. We'll tell you how we've handled things, give you advice, cry with you if that's what you need. Join in & let us know how you're doing. Hugs, SuZie & Sir SpYke the Fuzzy, GOT (Galactic Overlord in Training), master of all he surveys & King of Fluffy Sympathy aka my little fuzzy kittyGena <ravenwalker2008> wrote: Help me please .I've had hep C for 5 yrs. I have been through peg and ribo tx with no success. I am a mother of 3 and I already in Stage 3. I don't know how much longer I can hang on to my sanity. I have noone that understands what I'm going through. I just need someone I can talk to that nows what I am going

through, Never miss a thing. Make Yahoo your homepage. Next time I'm coming back as a cat

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

I am not sure my stage but have only had hep c for about 4 years and my dr says everything looks good. But my viral load is 4,000,000. I freeked out when I heard then found out that it is only a number and veries daily. Dont worry about the number too uch DGena wrote: I am 1a 3rd stage with viral load of 324555 it scares me because I used to be in a chat room and now can't find one in Yahoo. It was a lifesaver some days and today is one of

those days....suzie <suzieandsandy> wrote: Hi Gena, Welcome to the family. We may be a little nutty but we all know what you're going through & we're here for you when you need us. I'm SuZie, 58 year old single woman living in the GWN(Great White North - Thunder Bay, Ont. Canada) I've had hep c since 1969 I think & am now in ESLD(end stage liver disease) waiting for a transplant. Like you, I've been through tx(treatment) twice & didn't respond but both my tx were in the early 90s & just involved interferon & ribivirin. First of all, try to calm down. We've got a lot of people here who've been where you are & lots of support to offer you, that's what we're here for sweetie. If you have any questions, ask them. If you just want an ear to listen, we're all interested & listening. We'll tell you how we've handled things, give you advice, cry with you if that's what you need. Join in & let us know how you're doing. Hugs, SuZie & Sir SpYke the Fuzzy, GOT (Galactic Overlord in Training), master of all he surveys & King of Fluffy Sympathy aka my little fuzzy kittyGena <ravenwalker2008> wrote: Help me please .I've had hep C for 5 yrs. I have been through peg and ribo tx with no success. I am a mother of 3 and I already in Stage 3. I don't know how much longer I can hang on to my sanity. I have noone that understands what I'm going through. I just need someone I can talk to that nows what I am going through, Never miss a thing. Make Yahoo your homepage. Next time I'm coming back as a cat Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Yeah I know about the dep. signs already on kolonipin and ambien cr it helps most of the time I just wished Yahoo had a chat room..When I first found out the chats helped alot Doyle wrote: Hi Gena We are all in different stages of hep c here. But most of us have gone through some really hard times while having and maybe even because of it. It is a hard things to learn to deal with but we all have to. It hard to talk to people who dont know whats going on with you because most of the time

you will look and act fine but you might be very ill at that time. My friends will always ask whats wrong. When I am really tired, nausea or something is going on from the hep. They always say you look fine or sound fine but you are rght they dont understand. We dummies do understand and are always here to talk. I dont always post but I am here for you just as much as anyone. Maybe there is another tx or trying it again might work. I know different things work for different people. If you are really depressed because of this please talk with your dr. There are ways to help manage the hep. I hope I helped some. DGena <ravenwalker2008> wrote: Help me please .I've had hep C for 5 yrs. I have been through peg and ribo tx with no success. I am a

mother of 3 and I already in Stage 3. I don't know how much longer I can hang on to my sanity. I have noone that understands what I'm going through. I just need someone I can talk to that nows what I am going through, Never miss a thing. Make Yahoo your homepage. Looking for last minute shopping deals? Find them fast with Yahoo! Search.

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Hi

Gena. Welcome to our group. We understand and we care. Are

you a non-responder or relapser or could you not finish tx for some

reason? If you’ve tried once, you can try the other manufacturer,

or if you’ve tried both, you can try Infergen. There is always

hope. Most important, you now have us to talk to, vent to, whatever.

It’s tough when you don’t have people that understand. We

have people at all stages – from just dx to pre & post transplant.

Love

& hugs,

I need

help

Help me please .I've had hep C for 5 yrs. I have been through peg and

ribo tx with no success. I am a mother of 3 and I already in Stage 3. I

don't know how much longer I can hang on to my sanity. I have noone that

understands what I'm going through. I just need someone I can talk to that nows

what I am going through,

[Guest guest]

I tried to go to sleep last nite and almost did about 5ish and then woke up with 102.6 temp. Went to hosp and found out that I have an infection attacking kidneys and liver again. Sent me home on leviquin again with rest and see dr. on Mon. This sh*t sucks. I'm really getting fed-up FEM wrote: He had to answer about 20 questions. However he answered those questions determined whether he'd have to see a shrink.....apparantly his answers were the right ones, because they didn't say anything about going to a psychiatrist.Fem [HepatitisCSupportG roupForDummies] I need helpHelp me please .I've had hep C for 5 yrs. I have been through peg and ribo tx with no success. I am a mother of 3 and I already in Stage 3. I don't know how much longer I can hang on to my sanity. I have noone that understands what I'm going through. I just need someone I can talk to that nows what I am going through,No virus found in this outgoing message.Checked by AVG.Version: 7.5.519 / Virus Database: 269.21.7/1328 - Release Date: 3/13/2008 11:31 AMNever miss a thing. Make Yahoo your homepage. ____________________________________________________________________________________Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Gena,

there’s almost always someone on here. We are all in different time

zones and have all different sleeping patterns.

Re:

I need

help

Yeah I know about the dep. signs already on kolonipin

and ambien cr it helps most of the time I just wished Yahoo had a chat room..When

I first found out the chats helped alot

[Guest guest]

Word

of wisdom again from the Deliman…..

Crying is much like pee-ing...

One experiences great relief

from both....

As long as one doesn't hold

either in too long.

Deliman 02/08/08

[Guest guest]

The reson I had to see a shrink was because of the depression that runs in my family and they wanted to make sure I didn't have the same problems as other family members.Treatment is hard on mood swings and if there is a chemical imbalance in the family they like to know in advance.I ended up being normal,whatever that is supposed to be.We are here anytime you need us Fem.Have a great day.

Gail

-----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ]On Behalf Of FEMSent: March 16, 2008 1:23 AMTo: HepatitisCSupportGroupForDummies Subject: Re: I need help

He had to answer about 20 questions. However he answered those questions determined whether he'd have to see a shrink.....apparantly his answers were the right ones, because they didn't say anything about going to a psychiatrist.

Fem

[HepatitisCSupportG roupForDummies] I need help

Help me please .I've had hep C for 5 yrs. I have been through peg and ribo tx with no success. I am a mother of 3 and I already in Stage 3. I don't know how much longer I can hang on to my sanity.. I have noone that understands what I'm going through. I just need someone I can talk to that nows what I am going through,

No virus found in this outgoing message..Checked by AVG.Version: 7.5.519 / Virus Database: 269.21.7/1328 - Release Date: 3/13/2008 11:31 AM

Never miss a thing. Make Yahoo your homepage.

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Well, at least someone in this stupid "non-support" group benefited from my posts - even if they think that I'm a "he"........

See you in a bit - running late.

chris

My husband has high respect and credit to for his generous sharing his knowledge and his courage fighting the disease.We prayers for all !!

Hi ! Group,My name is Kathy. My husband,Fred,, has been infected HCV for about 7 years ago at a 5 star resort in Mexico by a local doctor with dirty needle for his back pain shot . Fred just had his 71 years birthday last month. He is legally blind man. He has glucoma. As his vision problem, I present him be in this group, chose and transfere the most helpful mails to his computer

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

[Guest guest]

Hi ! Group,

My name is Kathy. My husband,Fred,, has been infected HCV for about 7

years ago at a 5 star resort in Mexico by a local doctor with dirty needle

for his back pain shot . Fred just had his 71 years birthday last month. He

is legally blind man. He has glucoma. As his vision problem, I present

him be in this group, chose and transfere the most helpful mails to his

computer. We got education and rich knowledge and had tremendous help

and benefits from this group. I have no words to express how much our

appreciation to you all.

Fred had Liver- spleen scan 6 weeks ago and liver biopsy two weeks ago..

He is HCV 1A,stage 2 and grade 2. His liver scan showed his liver size

almost normal, his blood test at June Iron serum 155 (49-181 normal) but

FERRITIN very high,

It was 428 ( 23-233 normal). If did not join this group,we would never know

Iron has such important role in HCV tx.

The doctor has agreed Fred to start the tx and prescriped Pegasys 180

mcg SQ weekly and Ribavirin 1000mg per day.(600mg AM 400 PM). But

the dr.seems not care of his Iron or firrintin. We had adjust his diet since

we knew the iron roll in HCVtx.Under my husband insisted requering they

agree to give his blood test covering iron next time. My question is:

1. does Fred need to have a Iron check again and , if needed, to lower his

iron and firritin before starting the tx?

2. the first day starting the meds, what time is better to have the shot?

morning have the pills, is that mean better to have the shot starting at

morning too ?

3.what kind diet is better for Fred? Does he need to cut down his filet

mignon steak from twice/week to one? and etc..

Many thanks to Jackie, ,Sharon and all of the group people for

the supporting , caring and encourages, My husband has high respect and

credit to for his generous sharing his knowledge and his courage

fighting the disease.

We prayers for all !!

Sincerely,

Fred and Kathy

[Guest guest]

Your hubby should see a hematologist for therapeutic phlebotomies or at least iron chelation therapy to remove the excess iron . I go every other week and get 500 cc of blood removed to lessen the iron in my blood . It does help but it can also be very tiring so he will need someone to drive him . What is his iron saturation level ?

I need help

Hi ! Group,My name is Kathy. My husband,Fred,, has been infected HCV for about 7 years ago at a 5 star resort in Mexico by a local doctor with dirty needle for his back pain shot . Fred just had his 71 years birthday last month. He is legally blind man. He has glucoma. As his vision problem, I present him be in this group, chose and transfere the most helpful mails to his computer. We got education and rich knowledge and had tremendous help and benefits from this group. I have no words to express how much our appreciation to you all. Fred had Liver- spleen scan 6 weeks ago and liver biopsy two weeks ago.. He is HCV 1A,stage 2 and grade 2. His liver scan showed his liver size almost normal, his blood test at June Iron serum 155 (49-181 normal) but FERRITIN very high,It was 428 ( 23-233 normal). If did not join this group,we would never know Iron has such important role in HCV tx. The doctor has agreed Fred to start the tx and prescriped Pegasys 180 mcg SQ weekly and Ribavirin 1000mg per day.(600mg AM 400 PM). But the dr.seems not care of his Iron or firrintin. We had adjust his diet since we knew the iron roll in HCVtx.Under my husband insisted requering they agree to give his blood test covering iron next time. My question is:1. does Fred need to have a Iron check again and , if needed, to lower his iron and firritin before starting the tx?2. the first day starting the meds, what time is better to have the shot? morning have the pills, is that mean better to have the shot starting at morning too ?3.what kind diet is better for Fred? Does he need to cut down his filet mignon steak from twice/week to one? and etc..Many thanks to Jackie, ,Sharon and all of the group people for the supporting , caring and encourages, My husband has high respect and credit to for his generous sharing his knowledge and his courage fighting the disease.We prayers for all !!Sincerely,Fred and Kathy

[Guest guest]

Geeze I almost forgot to send the rest lol Your husband should have his shot right before bedtime to reduce his discomfort from any side effects . His doctor should also give him something to help him sleep through the night since during treatment allot of people have a hard time sleeping . And studies have shown that dietary changes don't help with reducing iron , but reducing his high iron will increase his odds of responding to the treatment and acheiving a sustained viralogical response .

I need help

Hi ! Group,My name is Kathy. My husband,Fred,, has been infected HCV for about 7 years ago at a 5 star resort in Mexico by a local doctor with dirty needle for his back pain shot . Fred just had his 71 years birthday last month. He is legally blind man. He has glucoma. As his vision problem, I present him be in this group, chose and transfere the most helpful mails to his computer. We got education and rich knowledge and had tremendous help and benefits from this group. I have no words to express how much our appreciation to you all. Fred had Liver- spleen scan 6 weeks ago and liver biopsy two weeks ago.. He is HCV 1A,stage 2 and grade 2. His liver scan showed his liver size almost normal, his blood test at June Iron serum 155 (49-181 normal) but FERRITIN very high,It was 428 ( 23-233 normal). If did not join this group,we would never know Iron has such important role in HCV tx. The doctor has agreed Fred to start the tx and prescriped Pegasys 180 mcg SQ weekly and Ribavirin 1000mg per day.(600mg AM 400 PM). But the dr.seems not care of his Iron or firrintin. We had adjust his diet since we knew the iron roll in HCVtx.Under my husband insisted requering they agree to give his blood test covering iron next time. My question is:1. does Fred need to have a Iron check again and , if needed, to lower his iron and firritin before starting the tx?2. the first day starting the meds, what time is better to have the shot? morning have the pills, is that mean better to have the shot starting at morning too ?3.what kind diet is better for Fred? Does he need to cut down his filet mignon steak from twice/week to one? and etc..Many thanks to Jackie, ,Sharon and all of the group people for the supporting , caring and encourages, My husband has high respect and credit to for his generous sharing his knowledge and his courage fighting the disease.We prayers for all !!Sincerely,Fred and Kathy

[Guest guest]

So what group were you really posting to?Jackie

Subject: Re: I need helpTo: Hepatitis_C_Central Date: Thursday, August 7, 2008, 10:28 AM

Well, at least someone in this stupid "non-support" group benefited from my posts - even if they think that I'm a "he"........

See you in a bit - running late.

chris

In a message dated 8/7/2008 12:17:18 P.M. Central Daylight Time, yuhui200477@ yahoo.com writes:

My husband has high respect and credit to for his generous sharing his knowledge and his courage fighting the disease.We prayers for all !!

Hi ! Group,My name is Kathy. My husband,Fred, , has been infected HCV for about 7 years ago at a 5 star resort in Mexico by a local doctor with dirty needle for his back pain shot . Fred just had his 71 years birthday last month. He is legally blind man. He has glucoma. As his vision problem, I present him be in this group, chose and transfere the most helpful mails to his computer

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[Guest guest]

Hi Kathy

welcome to the group and IM so glad you are finding help here.. thats our entire purpose for being..

Your husband does NOT need to reduce his filet steaks while on tx unelss HIS DOC says he needs to because of ammonia issues. While on tx, I was told that I MUST be on a protein based diet in order for the liver to keep itself regenerated.. now I know that lots of ppl really believe that low protein is the way to go but according to the drug pharmies, they promote a protein based diet.. that does not mean HIGH PROTEIN, but enough at each meal to keep blood sugars stable and help also with nausea from tx.. So two steaks a week is not going to be the worst thing for him.. he might even take those two filets and split them in half and use half of each steak FOUR times per week to make sure he gets enough protein.. Most ppl dont realize that we typically DO eat way too much at each setting.. 2-3 ounces per meal is enough to keep the blood levels stable and to keep enough protein in your body to keep your liver working its best...

However, if he has a lot of damage and trouble with ammonia levels then he does have to cut way back on protein,, not only in red meats but all sources of protein as when the liver is damaged that badly, it has a hard time breaking down the proteins..

You're a great spouse hon,, and he is lucky to have you there with him helping him.. I really believe that its harder on the spouse than it is on the person with this disease.. it has to be so frustrating to sit there and watch someone suffer but be unable to do anything to help or fix things.. You're a good person!!!!

Let us know if there is anything we can do for you and your hubby!

hugs and welcome again,

jackieJackie

Subject: I need helpTo: Hepatitis_C_Central Date: Thursday, August 7, 2008, 9:47 AM

Hi ! Group,My name is Kathy. My husband,Fred, , has been infected HCV for about 7 years ago at a 5 star resort in Mexico by a local doctor with dirty needle for his back pain shot . Fred just had his 71 years birthday last month. He is legally blind man. He has glucoma. As his vision problem, I present him be in this group, chose and transfere the most helpful mails to his computer. We got education and rich knowledge and had tremendous help and benefits from this group. I have no words to express how much our appreciation to you all. Fred had Liver- spleen scan 6 weeks ago and liver biopsy two weeks ago.. He is HCV 1A,stage 2 and grade 2. His liver scan showed his liver size almost normal, his blood test at June Iron serum 155 (49-181 normal) but FERRITIN very high,It was 428 ( 23-233 normal). If did not join this group,we would never know Iron has such important role in HCV tx. The doctor

has agreed Fred to start the tx and prescriped Pegasys 180 mcg SQ weekly and Ribavirin 1000mg per day.(600mg AM 400 PM). But the dr.seems not care of his Iron or firrintin. We had adjust his diet since we knew the iron roll in HCVtx.Under my husband insisted requering they agree to give his blood test covering iron next time. My question is:1. does Fred need to have a Iron check again and , if needed, to lower his iron and firritin before starting the tx?2. the first day starting the meds, what time is better to have the shot? morning have the pills, is that mean better to have the shot starting at morning too ?3.what kind diet is better for Fred? Does he need to cut down his filet mignon steak from twice/week to one? and etc..Many thanks to Jackie, ,Sharon and all of the group people for the supporting , caring and encourages, My husband has high respect and credit to for his

generous sharing his knowledge and his courage fighting the disease.We prayers for all !!Sincerely,Fred and Kathy