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Medical Forum / Diseases and Disorders / Hepatitis / January 2005Daughter
I've been reading with respect and admiration, the postings in this group and would like to ask a question if I may. My daughter (17) was just tested positive for Hep-C, twice. Once at the Red Cross, and the second at our doctors. They are now doing the RIBA test to confirm, (I don't know why our doctor didn,t do that in the first place) and I would like to know why or how she could have a false-positive EIA twice from different clinics? Is this normal in people who are definately positive? A VERY concerned Dad :( Hi Dano, Aw, I'm sorry. You sound like the kind of parent who shows concern and do so much right that you are probably asking yourself, "why me, why us". This is a mystery disease for about 30% of the people who do contract it. Does she have any ideas how this might have happened? I know it's so much easier said than done, but try not to panic, another way of telling you to try not to be like me. I'm new on the board but it sounds like she could have the infection. She won't be affected by it right away though as hat it could take 20 - 30 years for the virus to become active, as it is dormant before then. If she has the acute case rather than a chronic case, I think it could possibly go away on its own. She should still see a Gastroenterologist who specializes in Hepatology. Any ideas how she would have contracted it? I hope others post here and offer you support. I don't have the link to the organization that will list specialists in your area. There's a lot of research money pouring into the efforts to get a handle on the disease and there's hope that in the coming years there may be better treatment methods that have fewer side effects. Take care. I'm the support person for someone who is being treated for the Hep C. She'll be okay. -Wendy >She won't be >affected by it right away though as hat it could take 20 - 30 years for >the virus to become active, as it is dormant before then. The virus is never dormant. If you're lucky, and live accordingly, it doesn't cause major damage in the first 20-30 years, but it's always active. >If she has >the acute case rather than a chronic case, I think it could possibly go >away on its own. It could, but it would be better to immediately start treatment if she's an acute case. Only about 15-20% clear by themselves, but short treatment (24 weeks even for genotype 1) clears it in over 80%. Thomas  SignatureTo reach me, complete my last name in the address. Oh my gosh, sorry I was so uninformed. Thomas, explain the 80% cure. Are you saying that in the early stages, someone has an 80% chance. Then she should treat immediately!!! I thought the virus was dormant. I am so glad that all of you wrote. Another question I have. If the virus were to clear itself, would the person get very ill rapidly - say hosptialized and over and done with in a few days and jaundice???? I want to understand this more so I don't offer the wrong advice to someone. As for people not knowing how they got it, Larry doesn't know. Two different doctors told us the % that do not know how they got it is 30%. He had surgeries and dental work, and the doctor doing the surgery was disbarred. But he did not get any blood transfusions. I would think anywhere blood exists and is not kept sanitary could be a contributing factor. How can so many people know then? If you do physcial work (which Larry has) how likely is it that a worker could get blood on something and you could come into contact with it? You would also have to be bleeding. And sexual contact...that's hard to determine if he contracted it that way. Many people have tried Coke 1 or 2 times in general. I don't know if that's the case for him - I'm talking in general terms here. I know once someone had to fish for something in his eye (Navy nurse) using a needle. Sorry again that I was uninformed. Details just aren't for me. That's why I'm shoegirl I guess. I am blonde too. :). -Wendy The virus is never dormant. If you're lucky, and live accordingly, it doesn't cause major damage in the first 20-30 years, but it's always active. >If she has >the acute case rather than a chronic case, I think it could possibly go >away on its own. >>It could, but it would be better to immediately start treatment if she's >>an acute case. Only about 15-20% clear by themselves, but short >>treatment (24 weeks even for genotype 1) clears it in over 80%. >>Thomas >Thomas, explain the 80% cure. >Are you saying that in the early stages, someone has an 80% chance. It may even be higher: "A recent study showed a sustained virologic response in 42 of 43 patients (98%) with acute HCV infection who received 5 million IU of IFN alfa-2b subcutaneously daily for 4 weeks and then three times weekly for another 20 weeks." http://www.clevelandclinicmeded.com/hcv/acutehcv.htm More details here: http://www.hepcassoc.org/news/article45.html And: "Short-term therapy consisted of natural IFN-alfa (6 million units) administered on consecutive days for a period of 4 weeks. Any signs of recrudescence of disease were immediately followed by interval IFN therapy (3 times weekly for 20 weeks). In the early-intervention group, short-term therapy was associated with a sustained virological response in 13 of 15 patients (87%). Follow-up treatment was associated with a sustained virological response in both of the remaining 2 patients (100%)." http://www.hivandhepatitis.com/hep_c/news/2004/050704_a.html > If the >virus were to clear itself, would the person get very ill rapidly - say >hosptialized and over and done with in a few days and jaundice???? Getting jaundice usually is a good sign that the person will clear, but you don't have to. It can take 2-3 months after infection to clear, though. If it isn't gone in that time, treatment is recommended. The problem: if you don't know how you've been infected, you don't know how long you've had it. >As for people not knowing how they got it, Larry doesn't know. Two >different doctors told us the % that do not know how they got it is >30%. He had surgeries and dental work, and the doctor doing the >surgery was disbarred. But he did not get any blood transfusions. I >would think anywhere blood exists and is not kept sanitary could be a >contributing factor. How can so many people know then? Because for most people, contact with blood in the way required to get HCV is rare. It takes more than just casual contact even with blood, and transmission during sex is almost impossible (except for certain risky practices). Basically, the receiver has to have an open wound for the blood to enter the body, just touching blood with intact skin will not normally get you infected (I'd still avoid it, though). So for most people, it's either a blood transfusion (or a similar procedure, clotting factor products for hemophiliacs were infected as well) or needle-sharing. Everything else is not that frequent - snorting coke apparently is a possible transmission route if you share the straw (because of the injury to the nasal tissue). Unclean tattoos have been implicated in a larger number of cases. Really bad dental work and surgery (unsterilized equipment) have transferred it, too, though those cases have been pretty rare. Thomas SignatureTo reach me, complete my last name in the address. Re: Daughter Group: alt.support.hepatitis-c Date: Tue, Jan 4, 2005, 5:57pm (CST-2) From: shoegirl1@verizon.net (Wendela) Hi Dano, Aw, I'm sorry. You sound like the kind of parent who shows concern and do so much right that you are probably asking yourself, "why me, why us". This is a mystery disease for about 30% of the people who do contract it. Does she have any ideas how this might have happened? I know it's so much easier said than done, but try not to panic, another way of telling you to try not to be like me. I'm new on the board but it sounds like she could have the infection. She won't be affected by it right away though as hat it could take 20 - 30 years for the virus to become active, as it is dormant before then. If she has the acute case rather than a chronic case, I think it could possibly go away on its own. She should still see a Gastroenterologist who specializes in Hepatology. Any ideas how she would have contracted it? I hope others post here and offer you support. I don't have the link to the organization that will list specialists in your area. There's a lot of research money pouring into the efforts to get a handle on the disease and there's hope that in the coming years there may be better treatment methods that have fewer side effects. Take care. I'm the support person for someone who is being treated for the Hep C. She'll be okay. -Wendy /////////////// Sorry, but I usually do my best to not offer criticism of those offering advice and encuragement to those who need support and seek informed opinions about hepc related issues. I'm not gonna criticise the person posting it, but am going to take exception to what's beens said. A mystery disease? Not for most people. Most folk have a pretty good idea how they got it. It doesn't matter how we got it, fact is......we got it. This isn't a 'board'. None of us use thumbtacks to put notes up. This is a suppport group where real people ask real questions and rally round each other for real interaction over their real concerns about a disease that has real implications. To say that someone has 30 years before they should worry about hepc because it's dormant til then is pure poppycock. For the majority of us that have had it that long, we'll tell you that it's taken a real toll on our bodies to have had the dragon this long. There is no such thing as 'dormant' when it comes to hepc. Yeah, most of the damage is done thru time, but never underestimate the destructive force of the virus. There is alot of talk about waiting five years or so til there's an easy, effective cure. That's what they've said for the past 5 years, or more, and it hasn't happened yet. And now they're saying it'll be another 5 years. Studies have shown that it's easier to get rid of the virus when you haven't had it that long. And females respond to the current drugs better than men. KILL THE DRAGON NOW!!!! Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum Thank you all very much for your kind words and advice. I incorrectly stated yesterday that Katie (my daughter) was having a RIBA test to confirm the Hep-C, in fact, she had two of those already with Negative results, but the EIA tests were both Positive. She is now being given the NAT test to confirm. I was just curious as to why or how two seperate EIA tests could show positive, or is this common in people who have had the virus but no longer may? God Bless to you all.... 15% of all people who contract hepc will clear the virus on their own, without treatment, during the first 6 months of infection. After having hepc for six months, it is considered 'chronic' and the chances of a person clearing the virus on their own, without treatment, next to nil. Of the lucky 15%, all will still test positive for hcv antibodies for the rest of their life, however, they will not have a detectable viral load. Having a positive test for hcv antibodies is not the same as having the disease. It's possible your daughter may have tested positive for antibodies and have no viral load which would indicate she was one of the 15% that never developed a chronic infection. Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum >I've been reading with respect and admiration, the postings in this >group and would like to ask a question if I may. My daughter (17) was [quoted text clipped - 6 lines] > >A VERY concerned Dad :( Dano, I sure hope this only turns out to be a scare for you. My understanding is they might use the RIBA test to confirm in instances where the patient does not appear to have risk factors for HCV. In very rare cases the EIA may give a false positive, such as in with people with autoimmune disorders. Now, in my case, I did not have a RIBA to confirm and just went ahead and got the HCV RNA test to determine if I had an active infection. The reason given was that over 95% (of samples such as mine) are confirmed as positive. The RNA test would probably be the next step for your daughter if the RIBA came back positive. And I really hope that is not the case. But if it does, that only indicates she was exposed to the virus and developed antibodies, and not that she has an active infection. The HCV RNA test would be used for that. Something like 15-25% of people manage to fight off HCV infection spontaneously after being exposed. >I've been reading with respect and admiration, the postings in this >group and would like to ask a question if I may. My daughter (17) was [quoted text clipped - 6 lines] > >A VERY concerned Dad :( I'd try to get someone more knowledgeable involved. If she has twice tested positive for antibodies, a third test for the same makes no sense at all. What they should be doing is to test for HCV RNA, because only that tests for an active infection. Antibodies show that she has been in contact with the virus, but not that she still has it. She could well have cleared it on her own. Thomas SignatureTo reach me, complete my last name in the address. > I've been reading with respect and admiration, the postings in this > group and would like to ask a question if I may. My daughter (17) was [quoted text clipped - 6 lines] > > A VERY concerned Dad :( Maybe someone here more knowledgable than me will give you a more helpful answer, but I'll tell you that I was given several tests before Hep-C was definately confirmed. They check first to see if there are antibodies to hepititus present in the blood, which would mean you were exposed to it but your immune system may have fought it off. This test is simpler and less expensive and would make the second one unnessary if there were no antibodies. The next test would determine if you have the active virus in your blood, how much live virus there is and what genotype it is- which helps the dr recommend a course of action. I think your doctor just wanted to double check before he ordered more extensive testing. I know waiting for results is nervewracking. Your daughter already has a lot going for her- she has a wonderful supportive father! mercy It's normal to get confirmatory tests in the beginning. It's unusual to get false positives, but necessary to comfirm an initial positive. Besides the obvious need to make a proper diagnosis, doctors want to cover their a.s. Imagine the lawsuit that would result from starting someone on treatment that didn't need it. Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum This must be devastating for you. My husband and I will pray for your family. I know that when lee and I were diagnosed, we were told that I had probably had it sense the 60's My first fear and horror was that I may have infected my precious son. We have been spared that. Maybe your lovely daughter will be spared also. Zoe > I've been reading with respect and admiration, the postings in this > group and would like to ask a question if I may. My daughter (17) was [quoted text clipped - 6 lines] > > A VERY concerned Dad :( Hi Dano, Agree with Thomas that the RNA and the other test (for infection/load) should have been done immediately. I would ditch the doctor for sure. If it's your primary or HMO doctor, find another one. Good luck and keep us posted. Thank you to everyone here who provided support and information. My daughters test results (NAT) came back yesterday and she does not have Hep-C. God Bless you all. Dano Re: Daughter Group: alt.support.hepatitis-c Date: Thu, Jan 13, 2005, 5:59am (CST-2) From: one_astrix@hotmail.com (Dano) Thank you to everyone here who provided support and information. My daughters test results (NAT) came back yesterday and she does not have Hep-C. God Bless you all. Dano ///////// That's got to be a relief!! Good for her!!!!! Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum |
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