Time to break the chain?

[GrandOak]

First Mr. BB, then tonybuck, well it's looking like I can claim number three and put and end to this slide.  Perhaps the info Doug shared today can provide a ray of hope that there are still options.

Time to see if the trials are another alternative to try.  Otherwise, it sounds like it's time to check into how long one must wait to try again, finding out if doc will allow me to try again, or find another doc.

Although we did talk some about infergen, but was warned that sx's tend to be much more severe there.

I really do not know anymore.  Too many questions, few or no answers, fewer options.

[beamishboy]

buddy,didja have relapse or breakthrough? from your post,seems like maybe still waiting for PCR results? if so i'm keeping my fingers crossed(metaphorically) that test proves neg...if you got the results already & they're positive :i'm v sorry for you and send ya best wishs & strength  & luck-we can all use that!!

[tulsatime]

I am so sorry to hear the news. This darn Dragon has got to be killed once and for all. We need some different meds to come soon!!! I can still remember hearing the news of my relapse. It is a hard pill to swallow. Please don't give up. One day will be the right time to try something new. And we will survive!! Take care and God Bless... Debi

[sfbaygirl]

Geez, I am sooo sorry to hear this news!!! I just came across this now. You will fight another day, I know you will and eventually beat this darn thing!

[jmjm530]

Very sorry about your relapse. You'll be in my prayers tonight.

-- Jim

[Myown]

Your welcome.

Yes, I too personally need to hear from others who have faith that God is a God of the impossible.

Your right, that word from someone always seems to come at the right time. He's an on time God.

I know that if I get news of something discouraging, I will need those who have a scripture for me, I will need those who are possibly facing the same dilema to offer advice and comfort and I will also need those on the forum with the technical information, of which I am very limited.

That to me is well rounded support. Each person has their giftings in what area they are strongest to support. I welcome advice from everyone from the atheists to "holy roller," as some would say.

Right now I am experiencing everything from itchiness to bone pain in legs, hips. Swollen ankles and slightly swollen legs. To me this is looking like cirrohsis and that is getting me down a bit. Nobody seems to know how to diagnose.

I haven't told any of my Christian friends or anyone besides my husband and mother, what I have been diagnosed with. Should they understand? Yes. But people are people and I wouldn't want to be disapointed at this time,I;m not mentally strong enough at this time to take a let down.

Can I go to a diffferent site that has all  types of diseases and is Christian, yes, but it wouldn't be the same. This disease is sad enough, I couldn't bare to hear people suffering with even worse than us at this time.

Plus, I want to be amongst people who are strong in knowledge about this disease and the strongest might be someone of another faith and I welcome their advice. This is the meaning of being inclusive to me.

Yes, I seen the shots at George Bush, but we dealing with people from all across the country and certain states are very liberal.

Does that make it right, no, but you have to expect it.I just skip over the post, as you have obviously been doing, though dripping blood.lol

As Christians we are to pray for our leadership, granted, but George W. is not making me happy these days either, so I would imagine for a Democrat it is even harder to take.

It would be nice for the rapture to happen as I am typing,no more worry. it looks to be soon, so I don't think none of us should worry too much about anything.

Hey, GrandOak, we will all meet someday in a cloud and get to talk face to face. This is all so temporay, this life here.But we want to hold on and fulfill our purpose that HE has given us. We will. Please keep me in your prayers also. Thanks

[GrandOak]

Thank you Myown for stating, perhaps in simpler terms, the point I was trying to make.

While I try to not bring my faith into discussions as often as I might otherwise in a group setting, I too express my faith with those here when I feel led to do so trusting that they will provide the rock someone needs to stand upon at a time when all else seems to be sinking sand.

I know that over the last several months such words have bolstered me at times when my faith was seriously wavering as physical evidence spoke to the contrary.  Not so oddly, they've come at times when I needed to hear that small still voice the most.

As for politics, I often have to wipe blood streaming from my chin as I struggle to keep my fingers from typing what I would really want to say when I see comments berating an official because they are not Hollywood enough for todays coverage.  I think it's easy to take pot shots at someone who demonstrates fallability, especially when the press runs it ad nausium, without ever considering the enormous amount of responsibility and accountability which rests upon their shoulders.

[Myown]

Thanks for your response.
You're right, we both shared our opinions and I'm glad to see that you weren't offended with mine, nor was I with yours.

We can agreeably disagree.
Wish you the best!

[donAlfonso]

Sorry to learn of your relapse.  Keep the faith, keep on truckin', be well.

dA

[Forseegood]

I just hope we all come out of this okay...I shared my opinions, you shared yours, fair enough...it would be strange if this many people agreed on everything, be well...

[Myown]

So very sorry to hear of your relapse. Jesus will come through for you. Many people on this board will obviously be praying for you. I know you appreciate the "supportive" words I just gave you.

Forseegood,SoCal and others concerned about Faith...
.
At this moment GrandOak and others are finding that a drug failed them.

Some of these people have a faith, such as I do, that believes that though things look impossible, though man may have failed, God can and will come through.......

BUT...... even being a believer, a time such as this, your faith can be quenched....doesn't mean that the person is now going to become an atheist,or turn from God, it means that those surrounding him, gather together  and remind him that God can and will work it all out.

Should I hold my mouth shut, when I know that its God's word being spoken to him that will lift him up?  

No sorry, I have to give him the support on this support forum that would work best for him during this time of discouragement. I can't hand him a new drug, but I can remind him of the hope he has in Jesus.  

Would I tell someone Jewish on the forum that they must receive Jesus.  NO absolutely not,I don't believe this is the place for it.

Would I share the gospel "off the forum" with Jewish people, yes absolutely,I do it all the time.

I'm commanded to do it. It is what you call "The Great Commission." But on this forum, I haven't tried to "convert,"as some call it.

I am not new in faith in Jesus. Being zealous is a good thing, but I am not looking to tell Jewish people, Buddhist, or Muslims on this forum to follow Jesus. But I do expect that I can share my faith with like-minded people.

People of other faiths can engage in their exchanging of spiritual encouragement, if they so choose. But if they choose not to, that should not be the standard that the rest of the forum has to adhere to.


Another reason you see scripture quoting on the forum is God knows we will get discouraged in this life and that is why the bible says "encourage one another daily." This is not something that a Practicing Christian can turn off.

As GrandOak mentioned, science is even taking a new look at spirituality and faith in relationship to health.

Politics, well, I can see your point, but.. because we are hanging out with one another forming relationships, it will happen once in a while, I'm sure. No biggy as far as I am concerned, ..but that's just my opinion.

Hey, ya know what, I'll be honest with you...I voted for Bush.Do I regret it? YES. But there was slim pickins.

So now does that might make me "all inclusive".The Republicans on board will like me for voting for Bush and the Democrats will say, "thata, girl, you've seen the light."

I would like to see Pat Buchanan run and win if I had my choice,.... so now I lost all my friends on forum.

So in a nutshell, people should just skip over things that they don't want to read. It's not hard to do.

Take care.

[honey11]

I sure hated reading that you relapsed! Be Strong,,,There will be another way to get rid of the virus,,,You just went one route and it didn't work so another plan will be in the making. You are in my prayers!

[pln]

Thanks.:)

[bobbyullc]

the vertex post was from scruffy under the thread "JESUS PLEASE SEND US A CURE", it was the second answer down. you have to register and then download it. may take a few minutes but it is worth it it is very optomistic and meant for knowing professionals who are tough to fool.. good luck,
bobby

[Forseegood]

Grand Oak....firstly I wish you all the best and I'm very glad you are posting here, you seem like a very good and wise man. I know you didn't post your post to me directly, and I'm sorry if I seem to be intruding on your statement, but I would like to answer it with just my own thoughts, since I was one of the ones who took issue with some of the things posted you were referring to...

Please don't think I'm anti-religious, or anti-spritutal, because I'm not...one of the great things about this country is that people are allowed to worship or believe in any religion that gives them comfort...I sometimes take that for granted, but having gone to communist countries in the past, I really do appreciate the many freedoms we have in this country.

But it does say on this board, just scanning it very rapidly, that it is "not affliliated" with anyone, and it is merely "a patient-to-patient forum dealing with issues regarding hepatitis." I thought to myself, well, maybe I'm a hypocrite here in that I indulge in off topic chat and jokes, etc...but maybe, conveniently for myself, I consider that a form of support...very often when I've felt badly, due to this diseae, getting into a funny conversation here, made me, at least at the time, take my situation less seriously, and I felt much better because of it...

But the reason I say that we should leave "a lot" of political or religious talk off this forum is that it can be alienating and perhaps induce a lot of emotional argumentation...if there are many threads where they mention Jesus and much quoting of scripture, etc... A newcomer might come in here and think this a Christian Sponsored board, and maybe not feel comfortable if he/she were of a different faith...

I've seen it lately where a lot of these types of posts are not just confined to one thread, but spread throughout the board...it very well could appear that way to an uninformed, newly diagnosed patient looking for hepatitis information....

I would say the same if I saw a lot of quoting from the Talmud or Koran, or any other religious text...when I posted as much to a newcomer here, he countered some posts by saying that we hadn't "seen the light" to paraphrase, and that judgment time would come and we woudn't be on the boat or something to that effect...in my book, that is religious proselytysing, and shouldn't be allowed in a non-religious setting...such as a Hep C patient-to-patient forum.

I could of come back with a few arguments myself, but I reframed because I don't want this board to be about religious argumentation, it's a hep c board...maybe others agree with me...maybe not...

The same goes for politics, and I myself have engaged in some of this, however fleeting, and it's wrong on my part as well...as a liberal, I don't think some here would appreciate it if there were posts and posts bashing the current government and President...I wouldn't like it if people started quoting Rush Lumbaugh all over the place either....these types of things cause ill will and disagreement....which can interfere with the purpose of this board which is "Hepatitis Support and Information" in my opinon...

There are some really sick, sick people here, I don't have to tell you this, probably the last thing they need is to see people jumping all over each other because of religious or political argumentation....that's why it's probably a good idea to be less specific about spriritual talk of any kind...I don't think many people mind if the word God is mentioned, or I'll pray for you, things of this nature....these types of things have been said at forums like this for years. And yes, this can be comforting to many people...

But I think some here were beginning to object to the *specific* nature of the religious talk of late, the long quoting of biblical scripture, etc., this can make it complicated because of the aforementioned reasons....thank you for your indulgence...

[GrandOak]

Thx for sharing your sons experience with the Infergen.  I am not sure if I'm going to travel that road, but it was offered as an option.

To the others I listed, thanks for the exchange on the previous thread HeavenSoldier started.  Especially too HeavenSoldier for that thread and for the web reference.

It's a shame that some do not understand the difference between sharing vs. spreading their faith.  Perhaps that's part of the mystery for them. It's a shame to see how "rules" are often interpreted to try an silence others from sharing with one another when no such rules exist, at least as I read them I do not see a single reference to religion/faith/spirituality but my eyes and mind has not been firing on all cylinders at times since I began tx.

If someone has a problem with others sharing their faith with one another as a means to reach out and support another, then I would suggest that they simply use the option always open to them and that is to not read the posts.  That would seem to be a much more friendlier and tolorant way to approach the situation than to try and silence folks with which whom they may have a difference of opinion.

Like it or not, even the medical community is acknowledge more and more that there is evidence that religion/faith/spirituality does often times play a role in helping patients that they do not understand but have seen it work.  I have even heard some say that perhaps it is something which needs to be studied further to better understand why.

[countryboy]

I have been on infergen daily for six months. It seems like I have had less sides than the weekly peg-intron. Finding the correct AD has helped me a bunch.

[Lonestar823]

GrandOak, I am so very sorry to hear your news.  I don't know anyone on this board really but I've read it off and on for two years.  Beagle and Tonybuck too and I'm sure many of us have relapsed.  I live in a tiny seacoast town in New England.  When I was diagnosed in autumn of 2003 I was shocked.  I'd never heard of hep c.  Most of you on this board are much more proactive with this hideous little virus. I kinda just did what my small town doctor told me.  First I tried 6 months of peg and riba but I was told I was a slow responder so he took me off the peg.  Six months later I did 73 weeks of daily infergen with riba.  The original plan was to do 48 weeks but because I didn't clear until week 18-20 I went the extra mile.  I am a female with 1A Grade 1-2 (He said it could have been called either way)-2.  Really GrandOak, I didn't find the infergen much more difficult to bear than the peg.  The same sides.  I promise.  One is as horrible as the other, just that you have to poke more holes in yourself with the daily infergen.  It's worse in the beginning for a couple weeks and harder to tolerate for the long haul at the end.  I did have to do procrit twice a week too. Within two weeks of finishing I was almost my old self again.  If you can't wait for new meds to come out, please try the infergen.  It worked for me.  Don't give up, any of you.
Lonestar

[FlGuy]

Fixed dose seems to be the standard for genos 2/3.  However, the doc thinks that's a significant reason for my relapse (g3).  Going weight-based for the next go round.

[Pdilly]

Do you know if all genotypes have the weight based riba.  Mine is putting me on 800 per day and I am a 2.  Jim thought that was standard for 2's.  Maybe that is why there is so many relapsing. I haven't started tx yet but am just starting to get nervous.  Hopefully that will stop when I start the tx. With so many relapsing here I feel that I am almost doomed from the start.

[GrandOak]

See for more information on weight-based dosing for Ribavirin:

http://www.hivandhepatitis.com/2005icr/aasld/docs/111805_a.html

[cajunlady]

I am so sorry to hear your results.  Give yourself a break and then make decisions.  Good Luck.

Cajun

[merlino]

FLG - As always-Thanks for your help. Going to try and not think about it for the weekend.

NYGirl - hope you don't mind if I drive you a little crazy with questions. With tx coming soon I am starting to get a little nuts.

[FlGuy]

In my opinion, I think going after hard early on is a good approach.  If you get to a point where the riba needs to be scaled back you and the doc can do that or takes counter measures with rescue drugs. But it's important to knock it down and to get to undectable as soon as possible.  NYgirl is a good example.  Although it took her a while to get to und she stuck with the dosage (I think you and she are in the same neighborhood weightwise) She was also scaled back, after being und for sometime and she's got advice from a big liverhead.  NYG - wasn't it 1200 for you?
Merlino, the next couple of weeks will work on your head a lot. Trust your doc.

[NYgirl]

I was just about to leave work and now it makes me feel like sitting here and just typing and typing to you.

There have been a lot of unfortunate pieces of news lately...watching them is one of the hardest things I've ever gone through in my life.  I LOVE this forum and I LOVE all of the people...but in some way it was easier before I knew all of this you know?

Ignorance was grand.

In my mind everyone is always being cured and of course this SUCKS cause reality doesn't do what I want.

But soon enough we will be able to say CURE 100% (or at least better than the crappy odds now).

I'm SO SORRY.  You refused to give up the fight all this time.  I am SURE something new will come up and perhaps that will work.