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    Old 11-28-2005, 01:58 PM   #1
    jessy28
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    what is the correlation of viral load with hep?

    what is the meaning of your viral load? Does it mean you have it worse the higher your viral load is? Has anyone seen their viral load go up and then down and then up and then down? If so how much? How do you know if you liver is actually sick already with out a liver biopsy? My viral load jumped huge out of nowhere. I mean from like 274000 to 3.9 million. All of that in like a little over a year. Could hormones have done that to it? I did have a baby. I don't get it. I am scared. The doctor told me not to worry because it has no meaning but sometimes i feel like they only relate everything to wether they would treat or not. I get irritated sometimes.

     
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    Old 11-28-2005, 03:14 PM   #2
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    Re: what is the coraltion of viral load with hep?

    [QUOTE=jessy28]what is the meaning of your viral load? Does it mean you have it worse the higher your viral load is? Has anyone seen their viral load go up and then down and then up and then down? If so how much? How do you know if you liver is actually sick already with out a liver biopsy? My viral load jumped huge out of nowhere. I mean from like 274000 to 3.9 million. All of that in like a little over a year. Could hormones have done that to it? I did have a baby. I don't get it. I am scared. The doctor told me not to worry because it has no meaning but sometimes i feel like they only relate everything to wether they would treat or not. I get irritated sometimes.[/QUOTE


    There isn't any corrollation in the numbers. Of course, zero is a good thing but, we still do not know whether an undetected result is a cure or whether the virus is still in the body. Well, actually there is now evidence that the virus is still in the body and that different genotypes can be found in different samples of body fluid or tissue. Where that research is going to lead us I have no clue.

    Anyway, viral load goes up and down significantly. It is the measure of the treatment and not the disease. Mainly, it is used cause we haven't come up with anything better and we inherited the theory of viral load from HIV where it does have significance. When it gets right down to it, the scientists are still trying to figure out what means what and that leaves the community doctors scratching their heads very often.

    What we DO know for sure is that you must avoid alcohol and smoking, toxins and fat in the liver (likely through fat in the diet) No amount of treatment will compensate for the damage done by those factors.

    thanbey

     
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    Old 11-29-2005, 08:47 AM   #3
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    Re: what is the correlation of viral load with hep?

    Thank you. What about your liver enzymes or the liver level tests. What do those signify? Lets talk monitoring the desease. What kind of monitoring? What is a significant test that might tell you how you are doing or how your liver is doing? What have you heard. And do you know anything about insurance laws or do you have any personal experiences? Check out my other post.

     
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    Old 11-29-2005, 09:36 AM   #4
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    Re: what is the correlation of viral load with hep?

    Quote:
    Originally Posted by jessy28
    Thank you. What about your liver enzymes or the liver level tests. What do those signify? Lets talk monitoring the desease. What kind of monitoring? What is a significant test that might tell you how you are doing or how your liver is doing? What have you heard. And do you know anything about insurance laws or do you have any personal experiences? Check out my other post.

    Liver enzymes fluctuate as well. It is a pattern over time that alerts a physician to possible changes in status.

    Unfortunately, the gold standard for assessing the condition is the liver biopsy. I say unfortunately because it is not convenient or cheap. There is an effort to find another way but, so far, the biopsy every 3 to 5 years is the ticket.

    There has been some floating theory among doctors that a biopsy is not necessary if treatment is to be undertaken. This flies in the face of everything we know about the disease AND about treatment.

    Studies tell us that treatment can accelerate the progress of the disease. In those who achieve an SVR, this is less likely. However after a period of a year, in which architecture of the liver improves due to treatment, the majority of those who do not achieve SVR have worsened biopsy scores. This can occur even when SVR is achieved but is not, statistically, likely.

    At the recent Liver Meeting, the importance of the biopsy was underscored. Unfortunately, those who treated without a biopsy will not have a baseline to measure improvement by.

    Livers do age and are affected by factors other than the virus. This is why taking a disciplined approach to lifestyle is imprtant. Drugs, including BC pills can affect the liver. Always discuss the inplications of whatever you take with your doctor and hope the doctor has done his journal reading. It is wise to do some of your own research on medications as well and bring up questions and concerns proactively with your provider. Eliminating all the controllable factors is highly recommended so that you have room to allow certain less controllable factors to have the least impact, as it were.

    Insurance laws vary state to state and you can get information from the insurance commissioner's office in your state.

     
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    Old 11-29-2005, 06:31 PM   #5
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    Re: what is the correlation of viral load with hep?

    Thank you. We are moving from Chicago to kentucky. Right now some blood work for my husband is pending with the insurance agency. I don't know why but I am a little worried that they will not cover it. We will see.

     
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    Old 11-29-2005, 08:03 PM   #6
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    Re: what is the correlation of viral load with hep?

    Quote:
    Originally Posted by jessy28
    Thank you. We are moving from Chicago to kentucky. Right now some blood work for my husband is pending with the insurance agency. I don't know why but I am a little worried that they will not cover it. We will see.

    There are always appeals processes with every insurer. Also, the manufacturers of the therapies have people to help get the meds covered and to assist with the insurance issues. Google the meds he is taking and go to the patient assistance website for more info.

    thanbey

    Last edited by thanbey; 11-29-2005 at 08:05 PM.

     
    Old 11-30-2005, 07:34 AM   #7
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    Re: what is the correlation of viral load with hep?

    Actually he did get all of his paid for from the assistance program. At the time he had no insurance. We also found a local agency that will help with medical stuff for a year. They paid for all the blood work and appointments. But then that ran out and his insurance had been active for like 6 months. So he went for his blood work and now they say it is pending. It is taking forever. I don't know what they might come back with. Those blood tests are very important seeing as the drugs are very dangerous. He is doing great on the meds. But even during the treatment the " findings of studies" have changed. Honestly, I really don't like that they don't discuss the possible negatives that could come out of it enough. They talk about it but not all of it. I have found more imfo myself. His doctor did the hole thing where he did not do the biopsy. I don't get that. It can be really harmful if you are in a bad stage with your liver. I have heard research has shown that it may stop the damage temporarily but afterwards it seems to speed the process up. That is scary and I would think you would want to know something like that. I don't know. I am about to go in for my consultation tomorrow to get started. Now his doctor changed it to 9 months instead of 6 or 24 weeks for gen 3. Have you heard anything about that being the newest research out? I kind of want to know my liver status. How painful is the biopsy? I have a 7 month old and it scares me to think that this could kill me before he is even married or out of the house. Or even make me really sick where I could not give him my all. I know living healthy makes all the difference in the world. We do pretty well but there are definite areas where we could make major improvements. I read message boards where people are really sick from this and can no longer work and it has only been 15 to 20 yrs since they have had it. That would make my son 15 or 20. I want to live longer than that. But the do you think the odds of a cure coming out in the next 15 years is a pretty possible thing?

     
    Old 11-30-2005, 08:47 AM   #8
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    Re: what is the correlation of viral load with hep?

    Quote:
    Originally Posted by jessy28
    I know living healthy makes all the difference in the world. We do pretty well but there are definite areas where we could make major improvements. I read message boards where people are really sick from this and can no longer work and it has only been 15 to 20 yrs since they have had it. That would make my son 15 or 20. I want to live longer than that. But the do you think the odds of a cure coming out in the next 15 years is a pretty possible thing?
    When you first came to this site, we tried as best we could to inform you of the pluses and minuses of the treatment and, from all that I can remember, most of these issues were covered including the need to insist on a biopsy and the fact that immediate treatment was not likely necessary.

    The decisions you made, therefore, were as well informed as we could help you make them. You can still get a biopsy and change the course of treatment (including extending it, if that is what you decide) You can make decisions with the doctor or you can make different decisions than the doctor is recommending. What you now know is that this is not a situation that is cast in stone and that the knowledge base for both patient and provider is changing.

    The one thing I remember several people telling you, several times, is that this disease is not a life threatening one UNLESS you continue to ignore the advice of those trying to help you manage the factors that contribute to a worsening of the disease. You cannot benefit from treatment AND smoke, drink alcohol or do drugs. Treatment will not cover you if you have any of those behaviours. That's a fact you will have to come to terms with, either now or when the toll come due.

    I am going to be sharply clear here. There is no doubt in my mind that better treatments and possibly a cure are coming. You must carefully protect the condition of your liver so that the best advantage of whatever comes will fall to you. That means that if you smoke and drink, eat a diet high in fat and additives, have fat in your liver that results from poor food choices and sedentary lifestyle, the likelihood of anything helping once your liver is too damaged is very low. A better treatment coming? Absolutely! A miracle drug that will magically take care of bad choices? NO, not on a bet.

    Whatever major improvements you need to make are, make them starting today. And then, make the committment to yourself, your baby and your family every day after that. Do that and your chances for a long, healthy life of quality are almost guaranteed because you are starting with the best possible advantages: you are young, female and newly diagnosed. Refuse and your chances of having a serious liver disease are greatly increased.

    I hope this helps,

    thanbey

     
    Old 11-30-2005, 09:20 AM   #9
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    Re: what is the correlation of viral load with hep?

    Yes it helps. I don't know alot about the possible upcomming treatments that might be made available in the next 10 yrs. I do know what is good for this desease and what is not. It scares me when i hear of all of these permanent side effects after treatment. that is scary. I want to try the treatments. If I have bad sides I will quit. If I fair like my husband then I can handle it. I don't know. I hate making choices.

     
    Old 12-10-2005, 05:42 PM   #10
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    Re: what is the correlation of viral load with hep?

    Hi Jessy28,
    I am interested in your post as I have been diagnosed with hepC and have a 5 month old baby. We didn't know I had it until I was pregnant. I feel so blessed to have such a healthy baby boy, but know that there is a slight chance that he could have it (8%) I think. I think they can test the baby at 18 months because before then the baby may still have some of moms antibodies (or whatever). We have no idea where I got it because I don't fit into any of the risks. Fortunately I never drank alcohol or did drugs, etc. My fear now is more for my son than for me, I would feel horrible if he had this. My grandmother has it and we don't know if my mom does, so it is possible that I got it from one of them in which case I'm fairing pretty well for having it since birth. Anyway, just interested in your case as you ahve a new baby too Congrats on your 7 month old, enjoy every minute you have with your precious gift. Perhaps we can enjoy them more knowing that we might not be around for later events, and we always have to keep our heads up high and pray for the best. I know how frightening the biopsy sounds as I have sort of ignored this option out of fear of what they might find...will muster up the courage soon!! Best of luck

     
    Old 12-13-2005, 07:44 AM   #11
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    Re: what is the correlation of viral load with hep?

    They tested my son at 6 months. I made them do a not only the test they always want to order (antibody), which is not an acurate test in my eyes. I made them do a rna which tests specifically for the virus itself and is very sensitive. He came up negative. Positive for the anitbodies and neg for the virus. They say there can be anitbodies for up to 18 months. there is something like less than 5% of a chance the baby can get it and it is very scary to think that the baby could have it too. And it is even more scary to think that I might not get to see my son get married and have children of his own or worse, not even get to guide him through high school. It is just scary. It makes me sad to even think of that reality. I am not even 30 yet. My liver is in really good shape right now. I did the biopsy and it was not painful. It was fine. No big deal. It hurt afterwards that day but that was all. My results made me feel much better. They were barely any scarring stage 1 fibrosis looking good. I felt relieved. My husband just finished treatments and i am about to start. I have gen 3e. we will see how that goes. His went well and he responded perfectly to the tx. Now the biggy is the blood test for him in six months. and then further out to make sure the virus stays gone. I am going to go for it. I don't want someone else to raise my son. I don't want him to be left with no parents in his 20's or younger or maybe older. I don't want that. I will give this tx a try. I will pray and see what happens. It is worth a try and if at any point i don't feel like it is so worth the try anymore i will stop. good luck with the baby and all. it is so much fun right now. how old are you?

     
    Old 12-13-2005, 09:24 AM   #12
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    Re: what is the correlation of viral load with hep?

    Quote:
    Originally Posted by jessy28
    And it is even more scary to think that I might not get to see my son get married and have children of his own or worse, not even get to guide him through high school. It is just scary. It makes me sad to even think of that reality. I am not even 30 yet. My liver is in really good shape right now. I did the biopsy and it was not painful. It was fine. No big deal. It hurt afterwards that day but that was all. My results made me feel much better. They were barely any scarring stage 1 fibrosis looking good. I felt relieved. My husband just finished treatments and i am about to start. I have gen 3e. we will see how that goes. His went well and he responded perfectly to the tx. Now the biggy is the blood test for him in six months. and then further out to make sure the virus stays gone. I am going to go for it. I don't want someone else to raise my son. I don't want him to be left with no parents in his 20's or younger or maybe older. I don't want that. I will give this tx a try. I will pray and see what happens. It is worth a try and if at any point i don't feel like it is so worth the try anymore i will stop. good luck with the baby and all. it is so much fun right now. how old are you?

    Your continued posting about dying of hepatitis C is causing me great distress and frustration.

    It is utter nonsense. There is a 98% percent chance that you will live a long and healthy life and die of something else if you do not treat your hepatitis C. Only 2% of those with hepatitis C actually die of the disease. And NO ONE dies of the disease in the first 35-45 year or so unless they smoke, drink alcohol and do not take care of their own health.

    Preventing damage to your liver includes taking steps to controll the factors that you can control (no alcohol, smoking, and management of healthy nutritious food choices) whether or not you treat with the interferon.

    I am not invested in whether you treat or not. That is up to you. However, lots of people here have invested a lot of time in countering your inaccuracies about this and you continue to post it anyway as though it is fact. It isn't. I can't tell whether there is a need to retain some drama around this or whether you don't believe what is being said here. If you don't why do you keep asking us for input? It is not helpful to others to insist that you will die without treatment or that you will not be around to raise your son. It's rubbish, pure and simple!

    I am very glad your baby's tests came out well. That is what we all expected. Same with your biopsy. Great result and even more reason to carefully consider whether treatment is right for you.

    You are not dying of hepC and you never will die of hepC if you get your act together on the lifestyle issues. You will live to see your son and your grandsons grow up.

    thanbey

     
    Old 12-13-2005, 12:14 PM   #13
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    Re: what is the correlation of viral load with hep?

    i got to the point where it was difficult to attend classes so i started seeing the doctor. many tests were run. the doc said there was no reason to test for hcv if i had not abused drugs. diagnosis was possible neuropathy. the next year, different doctor... said my symptoms were classical for hcv, she tested and was positive. she looked at me sincerely and said, "i am sorry, but have it. i am soo sorry." she made me feel like i was going to be a goner within a few weeks! she made an appointment for me with a gastro who said that none of my symptoms were hcv related, and that my health was 100%. i thought, fine, but why do i feel so bad? pain and fatigue every day.

    i am very glad that i found this site and thanbey in particular! i was a lot more confused and afraid before. my doctors had me dizzy wondering what to believe. i wouldn't be surprised if there is alot of people out there more afraid than they should be. maybe some of the doctors feel the fear is justified because it makes people behave more safely?

     
    Old 12-13-2005, 01:29 PM   #14
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    Re: what is the correlation of viral load with hep?

    I do get all of that. But the fact is that I like to have an occasional drink and a big fat burger. I do smoke cigs and need to stop and know that smoking will probably kill me before hep does. I will be quitting that soon. But honestly i am doing tx now because if i indulge in a few drinks a couple times a week at the most i don't want to have to worry that it will probably kill me down the road in say 20. no offense but with out hep.....having a few drinks once a week won't kill you or occasionally eating the fatty foods as long as you are still not overweight and eat decent most of the time will not kill you. I also know that i can't drink during tx. I know! i don't want to have to completely concentrate all of my attention and center my life on healthy living. Not my idea of enjoyment or fun. I am not even 30. i am doing the tx in hopes to beat this and if not then i will take huge actions of change in my life style.

     
    Old 12-13-2005, 01:31 PM   #15
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    Re: what is the correlation of viral load with hep?

    and i have met people my age that have only had this for 10 yrs that do live healthy and they are already in the first stage of cir. that is scary. it is scary to even think about the effects of this when i am 40. that is still young to me. i would like to get rid of this and have to deal with the unknown rather than something i have and i know is there lurking and could attach at any time. a chick at my mom's work just got out of the hospital because of hep and she is one year older than me. she also is very uninformed and takes stuff she should not but still.

     
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