need more possitive info

[Birdiechipper]

Hi,
my wife tested possitive for Hep C, after thurough testing she was told she only had the foot print from hep c left in her blood and that it would always be there but she would never get hep c since her virual count was so low. is this true and possible.

[DonL]

Well, some people spontaneously clear the virus. I would have her dr do a PCR test, which will test for the presence of the virus in her blood. If this shows a viral load, then I would have a liver biopsy to determine the condition of her liver. At that point, you will have enough information to decide whether to treat or not.

Take a look at the site: http://janis7hepc.com/
It has a lot of good info and links to HepC information.

Best of luck to her and to you.

[Tallblonde]

If your wife has a measurable VL, then I'm afraid she DOES have active HCV.  Only an undetectable VL with the most sensitive test available (a qualitative test that measures down to 2 IU/mL) can reasonably assure her that she spontaneously cleared the virus.  But even then, she should repeat the test again in six months to make sure.

Susan

[HepCinLA]

The same thing happened to me.  I tested pos for Hep C.  For years and years I never had a detectable viral load or abnoral liver enzymes.  I guess back then, dr didn't much but I was told things like, I had it but I must have cleared the virus or that maybe I was testing false positive.
It wasn't until I became pregnant (about 10 years after testing pos for Hep C) that my liver enzymes went up and I had a detectable viral load.  I guess it must have been all that extra blood floating around or an increased immune system as the result of the pregnancy that flushed my viral load out of hiding and sent my enzymes soaring.
Anyway, I now know that Hep C isn't like Hep B, it's nearly impossible to clear on your own.  If your wife tested pos and a repeat test shows that she still has it after 6 months, then there's a good chance that it's there lurking in the background.

P.S. To TallBlonde - thanks for the advice on the Vanilla Red tea.  I don't think it's having any effect on my liver but it sure is yummy.

[Tallblonde]

Glad you like the tea.  

I'm curious about your situation (forgive me if I've forgotten some  information that you may have posted previously).  Are you doing the treatment?  Do you mind sharing your age, genotype, VL, stage/grade, etc.?

Susan

[cuteus]

all these negative results are not very accurate if they don't measure to at least below 50iu/ml.
all the people that keep posting that they tested negative for years, should include the range used in those tests. it is not an accurate comparison when someone tested negative in a test with a range in the thousands and those tested in a lower range.
get copies of your tests, if they had a range higher than 50iu/ml, it is possible you were all positive for hcv with a low viral count.  Also, were these tests quantitative or qualitative? a negative qualitative, would indicate no active infection more accurately than a quantitative.

[HepCinLA]

Wow!  Chevygal you are good!  That's right I have a 3-1/2 yr old and a 1-1/2 year old.  Hence my reason for wanting to postpone treatment.  Although now that I think about it, it seems like there's never really a good time to treat.  This hepatitis thing is really inconvenient - ha! ha!

TallBlonde - I'm 38 yr old.  I'm a 1B.  I was diagnosed sometime in the early 1990's.  I've had 3 biopsy's.  The first two were Grade 1 Stage 0 - minimal damage.  My third biopsy was done in 2003 at UCLA.  UCLA said it was Grade 2 Stage 1 but when I took the slide to my heptologist he had his pathologist reviewed the slide and concluded that it was really a Grade 1 Stage 0.  According to my hep dr. not all pathologist are equal and that I should rely on the stage 0 results.  In 2001 (shortly after giving birth) my VL was around 300,000 and my ALT was in the 90's.  In January 2004, my VL was down to 30,000 and my ALT was 54.  

I just had my ALT tested recently and it's back up to 74.  since there seems to be a correlation b/w my ALT and my VL, I imagine that my VL is up again. (Could fighting off a cold have caused my ALT to rise?)   I won't be able to see a GI until the end of Feb to have my VL retested.

Anyway, my GI at UCLA and my Hep dr. both seem to think that I have time to wait for a better treatment.  This advise is in contrast to a lot of what people have heard or are doing on this board.  If I remember correctly, there was a big debate a while back on this board on whether to treat or not to treat.  

Although I love my doctors and they are well known in the LA area, I can't help but worry about when I was infected.  I did receive some blood transfusions as a baby but what if I was really infected only a few months before I took my first hep c test.  It seems to me that I'm really a boderline stage 0/1 and therefore that this disease is progressing much quicker.  

I would be curious to try treatment.  But I don't want to do ribavarin.  I already have a short temper and riba rage is the last thing I need.  Can I do pegasys without the riba.  Can I do interferon alone?  Can I do a lower dosage of pegasys for twice the normal treatment time.  Trust me I'd love to wait bit wonder if I can afford to.  

So between now and my doctor's appointment, I think I'm going to (gasp!) exercise since there also seems to be a coincedence between my weight and my VL.  I was about 10 lbs lighter when my VL tested 30,000 and heavier when my VL was 300,000.  

So tonight, I'm gonna swear off the Oreos!
Peace,
S.

[HepCinLA]

In 1999, my HEP RNA Quantitative tests was <.20 (less than .2 million equivalents/ml) whatever that means.  Whatever test was available at the time, it was within normal range.  

In 1998, another Hep C RNA QNT test was <3.5eq/ml (less than 3.5 x 10 (exp) 5 equivalents/ml.  Again that also fell within normal range of tests available at the time.

I'm not sure, given today's technology if this means that I would have tested with a definiate viral load back then.

[GreatBird]

The VL thresholds in the tests have been getting lower and lower over the years. It looks to me like you could have had a low VL and tested normal with those thresholds.

I'm also in LA and not treating. I have a GI in Santa Monica who I like well enough to monitor my liver, but I'm not sure I'd treat with him--if and when I decide to do so (a 1B with stable VL at 300K and not much damage after about 30 years of the virus). Can I ask who your hep doctor is?

[HepCinLA]

My dr. is John Vierling at Cedars Sinai.  I like him b/c he is  clued into all the studies, new drugs in testing and very familiar w/ all the aspects of the disease.  He is the director of multi-organ transplants at Cedars and also teaches at UCLA.  

Before my first appt w/ him, I corresponded with a nurse up in NoCal and she said that he and any of the doctors in his office have excellent reputations.  

Oh and another thing I like is that he is very positive.  

Hope that helps.

[GreatBird]

Thanks! I checked and he's a PPO with my health plan. He's probably much more high powered than I need, but I don't really know what I need.

[Tallblonde]

Thank you for sharing all those details. I find your case very encouraging. More than a decade has gone by since your diagnosis and it appears that your liver is still in remarkably good shape.

It's also encouraging to know that I'm not the only one who is willing to take my chances and wait for better treatment options.   As you know, that's not always a popular position with many of the folks on this board (I wish there was more of a "pro-choice" attitude around here sometimes). But I'm comfortable with my decision, and it sounds like you are too.  I can understand why this isn't a good time for you to treat.  Your kids are very young and you want to be able to enjoy this precious time in their lives.  

Best wishes to you.  I hope you'll post more often, along with Greatbird, so we "non-treaters" can learn from each other.  

Take care,
Susan

[Tallblonde]

I know you probably mean well, but perhaps you shouldn't try to facilitate meetings between board members (as you did above with HepCinLA and Greatbird.  You did the same thing with me and another Ohio-based poster recently and it put me in a very awkward position because I didn't have any desire to relinguish my anonymity by meeting with this person.  Yet, this person apparently wanted to meet with me, so I felt "pressured" by the situation YOU created to oblige her.

Not a good idea, in my opinion.  Best to leave people to their own devices and allow them to move in that direction if it suits them.

Susan

[GreatBird]

Actually, I don't mind chev's matching up proclivities *ggg*. I don't feel like I need to be completely anonymous. I've met several of the people on another HepC board (hep central) and it was really nice.

OTOH, I work full time, am writing a book, and still have a child at home (chev I also had a baby at 28, and then I had one at 35), so I don't have any *extra* time, and I'm sure that HepCinLA is very busy with two small children, so it's okay if we don't take the opportunity. Still, it's nice to have someone to network with in one's own area.

One of the problems with being a non-treater on this board is that we need a different sort of support. People who are txing are generally having a really rough time and need almost daily coaching, information, sometimes intervention, and sometimes just empathy to make it through. Those of us who have made the educated decision to wait don't have that same challenge. I've been on this board a loooong time (since fall of 2002) and that's what I've come up with.

[cuteus]

"Those of us who have made the educated decision to wait.."
I know you probably did not state this to mean that the ones choosing tx did not make an educated decission, but it almost sounds like it...the limitations of the written word? Not trying to "split hairs" to borrow Susan's phrase, it just tickled something in my sensitive mind.

So many groups we could come up with; those that never treated, those treating, those that treated and are clear, the ones that treated and are not, etc. I guess it would be hard to find a forum that would cater to all, but I still feel Med Help is one of the best available and simplest to use.
I recently met a wonderful member from another site, who is not currently on Tx, but did try it, two of her daughters are HCv+, mine aren't.  We have many HCV things in common and many everday life items in common, as well as differences. If the friendship is valuable, we find a way to relate, even if do not completely understand the other person's position and beliefs, and can not completely feel what they are feeling and going through, friendship finds a way.

I hope for good health for you and your "babies"

[GreatBird]

cuteus--Mea cupla. I should have said "<i>an</i> educated decision." I had meant *of course* to differentiate that from being a decision based on denial, or avoidance, or whatever. But I think that whatever decision is made it should be an educated one, and that this forum's strength is that it does just that. It provides a great education.

chev--My next book has two oldest children for the protagonists. Interesting, I've never written one with a middle child. My hubby is a middle. He's one of the most patient, easy going people I know. In fact, most middles that I know tend to be more patient and tolerant than the rest of their family members. Is that true of you? I'm the intense, entitled older child *ggg*. I'm sure that has come through here every once in a while.

You know, I think if I (like you) had the 2 or a 3 variation of hepC, I would have treated by now, but having the 1B makes it rather daunting. Especially since I have no symptoms, and I've had it for 30 or 40 years. My liver is stage 1, grade 3 with a VL around 300K IU. Once they can cut treatment time, I'm on board. Or once they can assure me I'll feel as good after treatment as I do now, or when I know I can take the year to treat without losing my job and having my creativity dry up.

Anyway, I hope you are feeling better soon. I know the interferon-ribavirin combo really messes with the body's chemical balance and it can take a while for the body to get that back right. I had difficulty getting the old hormones/chemicals/etc. back into balance for six months after the birth of my first child. (Exascerbated by not enough sleep).

[cuteus]

and I always though I was a middle child, well, one of two. which middle child gets the mellow gene? maybe I am the exception to the patience rule...

[HepCinLA]

Thanks for everyone's kind words and advice.  Although it would be nice to one day meet Greatbird trust me the traffic on the 405 is hell!

My younger child has sleep problems so I'm averaging about 4 to 5 hours of interrupted sleep each night (2 hrs here another 3 hours there).  It's made me a cranky s.o.b.  I can only imagine adding interferon or riba on top of that.  If I could do treatment where it would only feel like a mild case of the flu then I would try treatment, but right now I can't parent two small kids if I'm going to be completely out of it.  I would need the energy to feed them, change them or pick them up to get them into a high chair.

Two doctors at two separate hospitals said I could postpone treatment for another 3 to 5 years however this decision seems to be an unpopular one with many people on this board.  Some people seem to think if you test posivite you need to treat immediately, hence one reason I dropped off this board a bit b/c I didn't like the way some people attacked the decision of those of us who decided to wait.  If I had listened to my first GI who told me that I needed to treat b/c I had a viral load, then I never would have been able to have another child (given my age and all).  It wasn't until I saw a specialist who said it was perfectly fine to postpone treatment.  I've since had a second child (both healthy) and my liver is no worse for the wear.  In fact some studies suggest pregnancy actually slows the progression of the disease.

Ironcially, I read a post yesterday where somone said they had this disease for 30 years and had either no or minimal damage.      The response of course was that they needed to treat.  I'm not saying you should never treat but this constant barage of "treat, treat, treat" regarless of circumstance or minimal liver damage makes it very difficult for me read this board sometimes.  I'm trying to feel comfortable with my decision (in light of my situation) and it is hard to do so when I feel my decision and my doctors are under scrutiny.  
  

[HepCinLA]

Chevy..you have been great..very supportive and non-judgmental.

Hang in there.  I have every hope that odds for SVR will continue to rise.  I also have faith that researchers will find that magic cocktail that keeps this thing in remission for longer periods.  

I will continue to read the boards.  I am keeping a file of things I learn on this site about how to treat sides so when the time comes I'll be prepared.  In the meantime, I also like reading about herbal treatments to try and keep my liver as healthy as possible.