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Author: Subject: A Note on The Hep C Thread & THANKS!

A Peach Supreme





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  posted on 7/30/2008 at 02:43 PM
Hep C Thread note and THANKS

First, I thank everyone who gave me support during the 120 total weeks of Interferon and Ribavirin treatments I did during 2001-2006. I got much support from friends here.

Secondly, I thank everyone that supported my first Hep C Forum thread and also the second one that I currently had inputted articles to. There was again much positive input from folk here.

I must say however, my efforts fell short. I only know of one person that even got tested for Hep C as a result of the thread. I know people who came forward and acknowledged they have Hep C. Nothing I could offer encouraged them to try treatment. I think many view it as too much of a hardship in relation to the rest of life. So my two goals of people getting tested and trying treatment fell short.

My last goal, of spreading education by printing articles, turned into far too much grief. A certain nurse on the Guest Book lambasted me for poor investigating, by me saying Hep C is rarely transmitted by sexual means. That is a fact and I printed medical articles supporting my statement. These were ignored and the position held that I do bad research. Fine, I quit the Guest Book, stick to the Forum. Again a nurse (different) becomes involved in controversy.

Without belaboring the point, there are different medical ways of saying treatment worked. Doctors are hesitant to say “cured”. (In any disease). The trend is to say “sustained response” and “undetectable”. There are liabilities in promising a patient they are “cured”. That is something they don’t tell a patient for many years. They talk odds and increasing odds.

With Hep C, most people who respond to treatment (undetectable during treatment), most who relapse, do so in 3 months post TX (99%). A good portion of the remaining 1% who relapse do so in the first year. A very small less than one percent relspase at a later time. The latest I have read on is a five year relapse. Obviously, if one relapses, the virus is hiding in a small amount (undetectable) in the liver.

The fact remains, over 50% of those who do TX never relapse and remain undetectable.

I will be the first to admit, that studies over ten and twenty years of TX patients will shed much more light on this subject (long term undetectable). However, no argument can be definitively made on if an undetectable amount remains in a person (as in a remission of sorts). If it can’t be found, one has a hard time proving it exists.

Why do I bring all this up? Because a nurse posting on the thread took on a mission to champion the cause of “There Is No Cure”.

As I said, some docs say “undetectable” some say “Sustained Viral Response”. Some say CURED. I printed articles showing this, again they were ignored. The point was to argue and prove right.

The message bothers me. Who will bother to do TX when a medical “professional” is telling them they can’t be cured, and printing things that allegedly prove that stance?

This was contrary to my intent of the Thread. I WANT people to believe they can have a great new life, as Gregg must believe.

SO............................

DISCLAIMER:

I am no longer affiliated with The Hep C Thread. Any message of NO CURE is a nurse Hillarie message and is MISLEADING AND UNPROVEN.

It is a shame a thread that should have been for the good of sick people turns into an argumentative thread, but that is kind of typical of this site and the GB and Forum. Keyboard Warriors Of The Peach.

HILLARIE: Please just start your own counterthread to rebut. You wouldn’t back down when I politely asked on the HC thread, but I ask again. Start a BIRD IS AN ASS thread, and burn me but good. Just respect my place to have a say here.

By The Way

I AM 2 YEAR POST TREATMENT UNDETECTABLE AND WILL GET 3 YEAR TEST IN A FEW MONTHS. And I am f*cking cured, if anyone wonders. Just please don’t tell any nurses that. Doctors, sure, not nurses.

Oh, and a recent post on the thread said meds don't cure, but Prayer and God does. Yes he does, and he gives out lollipops also.....

Am I bitter : No. Annoyed: yup.

Again, I thank all who supported me and the thread. YOU got it, even if you never got yer butts down to be tested. But, since there is no cure, save your time (sarcasm).




 

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Sublime Peach



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  posted on 7/30/2008 at 03:18 PM
You done good, Tony. Thanks for keeping us all informed and educating us.

If there were any other race other than the human race, I would join up immediately. People. Sheesh.

EAPFP

 

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Universal Peach



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  posted on 7/30/2008 at 03:30 PM
My own .02......
I believe the good you have done through this will keep happening, and that you will find out through the rest of this life and into the next just how much positive came from your efforts.....kids that didn't lose parents, people who didn't lose spouses, people who got a second chance they wouldn't have had. No telling how many of the articles were printed and handed to others, people who never registered here reading them, etc. It will be years before you realize and find out how much difference you have made. Probably more than anyone in the history of the site. But you may never know the whole story.

And if not one soul paid attention, well--you did what you could. What was within your hand to do. Your heart was right--still is. Take care.

 
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Zen Peach



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  posted on 7/30/2008 at 03:32 PM
quote:
My own .02......
I believe the good you have done through this will keep happening, and that you will find out through the rest of this life and into the next just how much positive came from your efforts.....kids that didn't lose parents, people who didn't lose spouses, people who got a second chance they wouldn't have had. No telling how many of the articles were printed and handed to others, people who never registered here reading them, etc. It will be years before you realize and find out how much difference you have made. Probably more than anyone in the history of the site. But you may never know the whole story.

And if not one soul paid attention, well--you did what you could. What was within your hand to do. Your heart was right--still is. Take care.


Ditto.

 

Zen Peach



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  posted on 7/30/2008 at 03:41 PM
Buppalo already said it better than I could, Bird (that's Bird with an 'I' ) Thanks for all the time you took to educate us on this disease that has become so widespread and common but is still so ignored and misunderstood. I'm glad your dragon has 'left the building' and thanks for placing your experience here to show that with treatment cure can be possible. It's a sign of a caring heart ... you done good!!! (btw - been tested myself a couple of years ago for my own piece of mind.)

 

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A Peach Supreme



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  posted on 7/30/2008 at 03:47 PM
bird72, I have read every page in that post. I know that your information has been 100% accurate. Thanks for all the research you have done.

 

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Zen Peach



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  posted on 7/30/2008 at 06:39 PM
Tony, last week when I was having my headache issues, which I still have, when the three doctors were checking off the blood work sheets I asked to be tested for all the Hep's thinking to do it while they were picking me for everything else. I did not have any detected. It said "neg" next to add the hep's on the list.

I was going to post that the other day on the HC topic but when I went there to read there was some frustration, so I just let it be.

I learned a ton of info from both topics and those are things I will remember. I have often gone back as a reference to the threads. That was a LOT of time and research all gathered in a couple of places and I was able to point those topics in links when anyone had questions.

I thank you X's 100 for doing all of that!

 

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Zen Peach



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  posted on 7/30/2008 at 06:53 PM
I always thoguht you were doing it for the right reasons man...you have to do what you have to do...i think you should stay with it...

 

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Peach Extraordinaire



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  posted on 7/30/2008 at 07:02 PM
This is not meant to be a negative and I can only assume some folks might think like me. I think your work was tremendous as far as me personaly getting tested I am sure I would have if I was having symptoms of anything that provided. I am not the worrying type and don't care to visit dr's so I would not request a test or even go to a dr if nothing was bothering me and I never did anything that would leave me to think i might have it.

 

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Peach Master



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  posted on 7/30/2008 at 07:53 PM
Don't let a groundhog derail all of the genuine hard work and effort you've put forth.

She doesn't deserve your response.

Continue to be good.
Peace

 

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  posted on 7/30/2008 at 07:53 PM
Don't let a groundhog derail all of the genuine hard work and effort you've put forth.

She doesn't deserve your response.

Continue to be good.
Peace

 

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A Peach Supreme



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  posted on 7/30/2008 at 08:02 PM
What everyone who posted here before me said. You have done more good than you will ever know and will probably ever find out. You followed your heart to help educate others and probably saved or lengthened a life or two along the way. You created a great reference thread for those who need information for themselves or for a loved one. You have helped many. You fought for your life for a very long time. And even after losing the first round or two, against all odds and amid great tragedy when you lost Derek you kept fighting until you were finally able to claim victory. You won. You showed the world that TX is not only doable but it does work. You are a role model and an inspiration even if you are crotchety and mean sometimes You have given hope to so many who otherwise may have just given up. Do not stop now, there is still a lot of work to be done. You are my hero. LM

 

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True Peach



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  posted on 7/30/2008 at 08:38 PM
quote:

If there were any other race other than the human race, I would join up immediately. People. P



Keep looking, you may find it !


Tony,

Lord knows how many people have learned a lot from you threads. People that are not even registed to post also.

Don't sweat it, it's not worth the second thought.

 

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Zen Peach



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  posted on 7/30/2008 at 08:49 PM
Tony, you & I have disagreed a time or two on other subjects.

Big effn deal.

As far as your Hep C thread, you've done so much more good than any of the naysayers ever will.



Bobo used to joke with me about some of your comments to him, we always got a good laugh because it all went back to doing what you could to help anyone who might benefit from your experience/research/firsthand knowledge.


In short, thanks for doing what you did, to inform who you could, regardless of who thought they new better.


Noone deserves to be accosted for trying to help others.

 

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Ultimate Peach



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  posted on 7/31/2008 at 07:53 AM
Tony,
I think your thread is the best one currently going. There is no question that you have done it out of genuine concern for others. I completely respect your decision to abondon it, but I think you should keep it up.

 

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Zen Peach



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  posted on 7/31/2008 at 08:08 AM
I wholeheartedly concur. You have done much to educate people and give them hope. In my mind, you have done a wonderful thing here. Hang in there, bud.

 

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Extreme Peach



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  posted on 7/31/2008 at 08:23 AM
Thanks for all the informative posts about HepC Tony. I'm sure it has opened many eyes here, whether it was mentioned or not.

In the medical world, some people don't like to use the word cured, because it leaves them open to the chance they could somehow be held liable in the future for making a promise they couldn't keep. In this lawsuit happy world, they won't take a chance.

It also has a bit to do with individual personalities...some folks can't be optimistic, and won't use a concrete word like cure. "No one knows what the future holds. Don't jump for joy yet."

Some folks like to be positive, and want to instill that good, optimistic feeling to the patients. " No reason to believe things will change for the worse now."

I believe (like you), that a good attitude has a tremendous effect on how we tolerate and fight off illness. It is one part of a successful outcome. You must believe that a cure can be done in order to achieve it, or it is too easy to give up.

Mitch





[Edited on 7/31/2008 by Mitch]

 

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Ultimate Peach



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  posted on 7/31/2008 at 08:36 AM
Tony,

You've done an excellent job of educating people on Hep C, and for that you should be highly commended. Somewhere down the line, somebody's life may be saved because of the information you've given about Hep C and you're own personal struggles going through Hep C treatment.

You and yours take care,
Fred B.

PS: Have you seriously considered writing a book about Hep C and what's going through treatment is like? I would encourage you to do so, as I think it would be a good first-person (and educational) read.

 
 


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