Guest guest Posted February 13, 2011 Report Share Posted February 13, 2011 CyndeWelcome, welcome - hopefully, you will get a shit load of information here and even more, lots of support and caring too.I love the way you describe the "brain fog". Yup, lots of us here suffer from that to various degrees. Now the liver palm and spider nevi - I had long before I was diagnosed; but, nobody ever noticed or pointed it out to me. I'm a natural redhead and so have a reddish tinge to my skin, is absolutely nothing new. However, just now I looked for confirmation and nope - my liver palm is still gone. I finally beat the dragon last year and the end of June was my celebration time as I was post 6 months with no virus.Now, the ascities and portal hypertension are definitely not side affects you want. Have you actually been diagnosed with them?? I thought that I must surely have the ascities too; because, I swear I was walking around with a huge baby waiting to be popped out. Then, when I was in the hospital for a liver operation, I listened to the man in the next room that was suffering terribly from the ascities!!! Can you believe that it made me feel like the 11 inch incision they cut into me, was nothing compared to what he was going through?? Thank heavens that I later learned that he did receive his liver transplant and all was going well.Gloria Hi Gang I’m unsure how I acquired HepC, but I’ve probably had it for 25 years before diagnosis. Since then, I’ve done two treatment regimens – Pegasys (weekly interferon shots + ribavirin) for 4 months; and Infergen (daily interferon shots + ribavirin) for 6 months. Both failed as the virus broke through. The treatments were very successful in frying my brain, however. I haven’t done a lot of networking or info-searching online until recently. But it seems every time I read the symptoms of chronic HepC, it’s a brand new set of signs, that then also correlates to new, mysterious, and unusual feelings that I have been having. For example, ascites, portal hypertension, liver palm, spider nevi. . . and a lot of estrogen. Plus this strange non-sad depression, where I don’t feel emotionally depressed, but my body and mind are sluggish and slow to react. Anyway I’m looking for the good information and support that is supposed to be disseminated by this group. Cyn-0 From: Christ Sent: Monday, February 07, 2011 9:00 AM WebWarriors grp Subject: [ ] Welcome New Members I would like to welcome our newest members to the group: cyn0matic [Cynde] Thank you for joining us. Please say hi so we can all say hi back. love don in ks To post on forum: <--- click here Links Library: http://health.dir./group/ /links <--- click here Our Sponcer: http://www.healthyhepper.com/ <--- click here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2011 Report Share Posted February 13, 2011 Hi Teri, and the rest As for your questions about the timing of the interferon regimens, they both were intended to be 48 week treatments. The first time, 3-4 months into it, when the viral load hadn’t responded at all, the docs said to stop. The second treatment round, the viral load did go to 0 at three months, but a couple of months later it broke through and was back up to 49 million (by one of the several confusing counts) so once again the docs said to stop treatment. The docs were in agreement that statistics showed that continuing treatment after either no viral load drop, or a breakthrough of the virus, was not useful. As for me, I feel like I just helped to evolve a bunch of interferon-resistant HepC viruses. I haven’t been diagnosed with ascites or portal hypertension yet. I can feel it in my liver, the portal bubbling and vibrating when it comes time for it to squirt its stuff into my intestines. I can hear the sloshing of fluid in my perineum. I have seen folks with bad ascites, and I’m not there yet. It’s sort of cyclic, it comes and goes, with deep intense itchiness. I’m really not sure I can handle yet another round of that punishing treatment. But I guess I’ll make that decision when the protease inhibitors come around and there’s more news about it. My genotype tested 2 when I was first told of the diagnosis. But now it tests at genotype 1. Don’t ask me what that means. The doctors I have told seem uninterested as well. The symptoms I am having are obviously related to the damage to my liver. The liver palm, spider nevi, these were things I showed my last doctor. She looked carefully and went hmmm, but did not tell me that they were symptoms of HepC. I had to figure that out later, reading websites about signs and symptoms. I am mystified by these clinical encounters; wouldn’t it be useful to tell me that they are signs? Did she even know? Do they withhold information, or do they think I already know? It’s all very strange, and I don’t know what to make of it. This is something I would like to chat about with this list. As my insurance keeps changing, I am now working on training my third set of doctors about HepC and me. When I enter that medical machine, I feel like I’m just entering the decision tree and being blindly processed through it. They say a few soothing words, and send me back home, with little more knowledge than I had before. I guess I need to be more firm with them or something. But this apathy and slow thinking interferes with the encounter as well. Well, thanks for letting me vent. It’s great to hear from other people who know the score. From: Theresa Gottlieb Sent: Saturday, February 12, 2011 12:57 PM Subject: Re: [ ] Welcome New Members Cynde, Welcome to the Warriors! My name is Teri. I was diagnosed with hep c in 2004 and went thru treatment for 48 weeks in 2005-2006. I am one of the lucky ones... I went thru tx and got rid of the virus on my first go around. I am cured. Let me address some of the things in your post for you... As far as how you acquired hep c.. it doesn't matter, not one bit. What matters now is what you do with it now that you know you have it. There are countless ways to get this virus and most of us will never ever know for sure. Even if we can track it back to a blood transfusion, like I thought I could, the possibility exists that it came from a trip to the dentist office or from getting my ears pierced at the mall. Who knows. It's not worth worrying about. You say you have gone thru 2 regimens of treatment... once for 4 months and once for 6 months. What is your genotype? I have never heard of a 4 month regimen... minimum is 6 months. There are new medications coming out that work in connection with the Ribavirin and Interferon that will give you another chance to possibly eradicate the virus. You may need a longer time on treatment or the addition of one of the new protease inhibitors to clear. The symptoms you are describing could very well be from your hep c and the damage to your liver. Not uncommon complaints but I know they are very uncomfortable. There are folks on this forum in all stages of their walk with hep c. From newly diagnosed to on treatment, treated and cured, treated and relapsed and some that have been living with the virus for a variety of reasons. There are people here who are using alternative methods to try to keep their liver healthy and the hep c at bay. Feel free to ask any question.. the only dumb question is the one you didn't ask... Hugs,Teri On Sat, Feb 12, 2011 at 11:35 AM, Cynde Moya <cyndemoya@...> wrote: Hi Gang I’m unsure how I acquired HepC, but I’ve probably had it for 25 years before diagnosis. Since then, I’ve done two treatment regimens – Pegasys (weekly interferon shots + ribavirin) for 4 months; and Infergen (daily interferon shots + ribavirin) for 6 months. Both failed as the virus broke through. The treatments were very successful in frying my brain, however. I haven’t done a lot of networking or info-searching online until recently. But it seems every time I read the symptoms of chronic HepC, it’s a brand new set of signs, that then also correlates to new, mysterious, and unusual feelings that I have been having. For example, ascites, portal hypertension, liver palm, spider nevi. . . and a lot of estrogen. Plus this strange non-sad depression, where I don’t feel emotionally depressed, but my body and mind are sluggish and slow to react. Anyway I’m looking for the good information and support that is supposed to be disseminated by this group. Cyn-0 From: Christ Sent: Monday, February 07, 2011 9:00 AM WebWarriors grp Subject: [ ] Welcome New Members I would like to welcome our newest members to the group: cyn0matic [Cynde] Thank you for joining us. Please say hi so we can all say hi back. love don in ks To post on forum: <--- click here Links Library: http://health.dir./group/ /links <--- click here Our Sponcer: http://www.healthyhepper.com/ <--- click here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2011 Report Share Posted March 4, 2011 I would like to welcome our newest members to the group: larry_peckham Thank you for joining us. Please say hi so we can all say hi back. love don in ks To post on forum: <--- click here Links Library: http://health.dir./group/ /links <--- click here Our Sponcer: http://www.healthyhepper.com/ <--- click here Quote Link to comment Share on other sites More sharing options...
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