Philzone.org Discussion Board: Archive 2004: Hep C Archive: Hi, I'm new. I'm looking for some help/feedback/etc.

I've had hep c for 30 years. I am a n00b. Could anyone help me?
I've had 3 liver biopsies. The last one was 2000, showed minimal fibrosis, Dr. said come back in 6 years.
I also have asthma (was not that bad until 11 months ago). I take corticosteroid inhaler just to breathe, half dose if I can get away with it. This medication lowers my immune system and my viral load and enzymes went from 1.1 million, 84 and 96 to 5.5 million 140 and 168 in 18 months.
Been in rocovery for over 5 years, eat healthy and live completely clean. I'm trying to avoid going on interferon since I'm the sole provider for my Son.
Four weeks ago began taking, ALA 300mgs, milk thistle 800mgs, various teas, reishi mushroom and mushroom complex, acetyl cycteine, thymus glandular, C, B complex, multi, etc., tying desperately to halt the progression of this disease.
I will be seeing a liver specialist shortly, probably get a biopsy, and will do interferon only if he tells me I have 10 years to live.
Can anyone tell me about their experience with these supplements, interferon, fear of death, etc.
I am afraid for my life.
What do you all recommend because I'm losing it.

Hi Jeff,

Lots of things to consider there that only you can choose for what's best for you.

Welcome aboard..climb on the bus. There's a lot of good folk inside.

How old is your son? I raised mine by myself...

Dan

Hi Dan,
I'm on the bus now. Friends in rcovery say I should leave the doctoring to Doctors. I have less fear now about interferon if it could save my life. My son is a 17 year-old near genius (so he thinks). He is pretty brilliant.

Jeff

Jeffrey, I just sent you an email, call me.
PEACE, Mark

Hey Jeffrey,
Welcome to the pfamily!!


Bruce

There's lots of information in the Philzone, by asking, by reading older threads, etc. Actual, personal experiences to round out and make real, the vital information you learn from doctors. There might be information here which helps you make the best "informed decisions." Most important, good friends and moral support are here! Peace, Fran

Mornin, Fran, Hope your day is starting well. Just finishing a great weekend myself.
Just had a mighty fine converse with new phriend Bruce in Montana. Very cool dude. He will be great addition to phamily.
PEACE, Mark

Hey Jeff
Welcome. My only suggestion is to read, study, and read some more about HepC and TX. Listen and pay attention to your body. Most likely I had HepC most of my childrens life, and I raised them myself. After my first biopsy and many hours of research I decided to Not do TX at that time(1997). Now 8 years later I am on my 14 or 15th week of Pegasys. I have no regrets in waiting BUT I had done my research, had a biopsy, and had evaluated my general health and how I felt. I have taken Milk Thistle for 8 years. Take care of yourself and welcome to the site.

Hi Jeff and WELCOME!!!,

I will try and drop you a personal e-mail later tonight possibly or tomorrow. I am in a rush as I have some important errends to run right now. Just wanted to say your at a good site here, with alot of good people and good info available.
Take it all in, read, and get many opinions. Talk to more than one Dr. if possible, and try seeing a specialist if at all possible!!
There are many "free" studies going on if money or ins. is a problem. Ask if this is a concern, and we will try to direct you to the right places!!
I also have asthma....so I know a little about that as well. I'll talk at ya later.....
Peace brother & best wishes,
Martin

welcome to the phamily, Jeff, you're in a very
good place here. Like Fran and Carol said: read.
There's hours of reading everyone's experiences
with all the different things associated with this
Dragon (HCV). Your viral load and enzymes are very
high. Was that test done in 2000? If so, I'd
seriously think about going on treatment. Like
Martin said, there's free treatment meds. out there and the TX. is very doable. I see you're in
California. If you're in SoCal, our two brothers,
Mark and Dan, are in the greater L.A. area, not to
mention a few others in Cali. Also, you got me
puzzled with your geno type: n00b. Never came
across that one, anybody else hear of that geno
type? But anycase, pull up a chair and read,listen,post,whine,rejoyce,cry,care,talk,
write and get ready to have some phun with this
wonderful,crazy,nearly-normal phamily.
SEA YA LATTER, Capt. Budley

Hey, Jeff,

Wilkommen! it's a wild ride, but a good cast of characters here on the bus taking us furthur into battle with the lizard. Sift throught the older threads, they are full of golden information. take what you learn to the doc, and let'er rip.

Come back often, and let us know how you are doing.

Good luck,

Jim

Welcome Jeff -
Keep the Faith and keep coming back

Aloha Jeff,
Welcome to our phun group. You can see we welcome newbies with open arms. It's great that you are taking care of yourself and eating right. I would start making sure you get plenty of exercise and drink TONS of water. If you do decide to do treatment, it's a must and if you don't, it's still good for you!
I don't think you should get your mind set against treatment. Those are some pretty dramatic increases with your numbers and treatment may be the way to go. Many of us here have been through it and found it doable, taking care of families and continuing to work. Not saying it's a day at the beach but may be the right thing to do.
Find out all you can about your options....listen and ask questions of your liver specialist and know that we are here for you.
Peace,
Claudia

Hi Jeff
You found us!
You are in the right spot- this is about as much phun as you can have while battlin' the Dragon.
Lotsa good people here with lots of first- hand experience at this.
Come back often, ask questions, and keep us posted

Well you now have your spot on the bus this is DOABLE Stay close and I hope the pix comes out because I'm on different pc hang in there

Welcome Jeff...I, too, was just diagnosed this past summer. I know that I will be going on Tx in January since my viral load is heavy. I am awaiting all test results but so far so good. I beleieve your doctors will better tell you just what your chances are. But I must agree with friends that the threads below tell you our tales. There is new meds now that are being clinically tested. Mostly for the past three months, I am on lots of vitamins and fruit juices.
Three juices I would recommend are Bilberry (immune system and lessens inflammation), Noni (immune system), and Xango (on internet you can buy directly from company for less)
I was angry, denied that I could have it, and now I am preparing for the fight. It is doable with support. that is what we are all here for.
You should read and go to sights that are offered. Speak with your Docotrs, find support group in area and find out what works for them. Most of my group are fighting with the organic,
vitamin. But we have those who have won the battle and some with no success. In the end it is your choice but get all the info you can to make the right decision. I want to be around to fight for awareness and for my family! We will be here for you......

Thank you all, you are beatiful. Saw my Dr. today (hep specialist). He said I could go on treatment now, if I desired. I expressed my concerns and fears, but told him I would do treatment if the biopsy I'll have in 2 weeks shows damage. I asked him what he would do if he were me. He said, get the biopsy, blood work, then we'll decide. I don't want to wait until there is significant fibrosis. He said if my biopsy is as good as year 2000, I can wait. Thanks phamily for lessening the fear.

Jeff, did you get my email?

Hey Jeff,

I see you are nearby.. Did you catch the Irvine Meadows show last May?

My boys are 20 and 25.... both know more about the world than I do..... Both my boys are moved out of the house now.. yours is 17.. brace yourself.

Hey Jeff. Welcome to this place we call home.

Hey Dan,
I used to see the Dead for free in Golden Gate Park (San Fran) 1974 to 1976 while attending UC Berkeley. Have not seen them since 1990. Saw about 5 Dead shows at Irvine Meadows in the 80's.

Hi Pham,
Hey, which of you have done the peg-interferon and what was the outcome?

Jeffrey, Why are you ignoring my email?

Mark,
I have not looked at my computer at home yet. I will look at it tonight, thank you for responding. I'm at work right now jkahn@torinogroup.com

Welcome Jeff and Bruce...gald you found us...your fighting for you life but you don't need to do it alone....Great bunch of Dragon Warriors here...keep comming back..peace...mack

Mack, got that thing hangin round my neck. Never seen it blown up. thanks, my eyes......
PEACE, Mark

Mack,
Thank you for your gracious welcome !!!
Individually our fights alone,seem helpless, But
as united, we are victorious against the Dragon !!!
Bruce

Mack's St. George is hangin' around my neck from a silver chain which was a gift from Mark at the first annual Sail-N-Stomp in Weaverville, California.
Life is good...

Jeff,

I believe just about everybody here is either taking peg-intron, about to take peg-intron, or has taken it-or pegasys, which is just another brand name. The results seem to be at or above the 80% success rate claimed. The biggest sides that I ran into were the flu-like feeling and fatigue. Both were reduced as time went by. I myself have a stubborn dragon, which did not die. I am looking into studies of the next great white hope, infergen, or gamma interferon. I will let folks know how that goes. I believe that a couple of us are taking that now.

The thing that I will tell you, as all of us will confirm, is that this is doable. Fighting the dragon and staying employed is doable. Fighting the dragon and rasing your son is doable. The worst part of the pre-treatment zone is the fear. Don't let it get you.

Good luck,

Jim

Yeah, I've been wearing my St. George from day one, ( since Mack sent it) which is highly unusuall for me. I very rarely ever wear any jewelry as it usual causes me to break out in a rash sometimes, or is just very uncomfortable for me. I don't wear rings or braclets or any of that sort of thing.
I just sort of told myself that I was going to try my best to wear this as a symbol of our united phamily here, and my commitment to beat this dragon. So far.....so good!! It has bothered me a few times at night while sleeping, but I still have not taken it off.....and now it has become kind of a thing where I want to see how long I can actually wear it!! ( maybe forever!!)

Thanks Mack!!! Can you remember when you sent it to me? I'm thinking maybe in the summer like July or August? Just curious....

Hello Jeffrey,
I am on the peg-intron redipen .04 mg. for 24 weeks, I am now at shot #16. and not to scare you but its been f#%ked for me. My gastro Dr said when I went in for my half way viral load test that not many people tolerate this shit well. But the good news is that I cleared (no detectable virus)!!!!!! So the hell I've been thru is well worth it. It's doable my fellow dragon slayer.

Sami,

Good to see you posting!! Three cheers for the undetectable reading!

Jim

Sami - congrats on the undetectable! You're on the downhill slide.........hang in there.

Lauree

Sami, sounds like your doing better, especially for second day after shot. Keep up that positive attitude. The dragon hates it as he is dying!
PEACE, Mark

Martino, I wear no jewelry either. But I haven't taken off my symbol of our fight together since it arrived.
PEACE, Mark

Thank you everyone for the encouragement. I've been here but lurking in the shadows. Jeffs plea for info struck a cord with me and I had to give him my experence. And Mark your right about the dragon fighting back seems like the sides are worst now than in the beginning. But your probibly right the dragon realizes he's fighting a losing battle now. My prayers are with you all that are fighting the beast.
Love Sami

Jeff, I did the PegIntron. It was a brutal ride but it did work for me.

Congrats Sami! It's all worth while in the end when you get that news.

I did Pegintron then Pegasys, it was all horrible. But I kept my job through the whole thing. It is doable. And, to all of you who haven't started treatment yet, it's always possible that you might be among the people who get few side effects, it could happen!!

Sami, keep on keepin' on, I'm so happy for you. Peace

For Sami..

Go Sami...You ROCK!

Jeff,
nothing I can tell you about being dead.
Fear of dying is a reasonable emotion encountering everyone, sick or not. Best of luck Bro.