tested positive for Hep C after 8 years of Neg results

I was just informed that my latest screening for Hep C has come back positive. My Mother contracted Hep C through a blood transfusion befor i was born she found out when i was 16 years old that she had Hep C I was tested immediatly and results came back negative and about every year i have been tested myself usually after staying with my mom for any amount of time. With my positve result after so many years of negative i am confussed. there is no where else that i could have gotton this from. my dr said that sometimes it can just be too low for tests to pick up the virus. Now myself i have a daughter of my own. I am only 25 i wanted more children... but now i find that i dont think that icould have more because i would always be afraid thati would pass iton to them. I guess my question here is ... has anyone else born to a Hep pos mother found out that they have it after neumerus neg test results?

[lackalustre]

i have four children and they all tested neg. when i was diagnsed in '98. all were born when i had active hepc. ive sinced cleared the virus in 03 with tx.
   one of my kids was recently tested for all kinds of hep  due to some other health problem and tested neg.
   ive never heard of someone testing pos.  as in your case.  its pretty hard to spread just being around someone.  otherwise all of our family members would be sick.

[Kalio1]

I am wondering why you " test for hep c after staying for any length of time with my Mom" You can not get Hep c from being around your Mom! You would have to share blood with your Mother to have ANY chance of contracting it. There is no need to test yourself because you spent time around her. This is a blood to blood illness, you can NOT pass it to anyone through any other bodiy fluid or from spending time around her. You might be thinking of other types of hepatitis, but hep c is NOT transmitted that way.

Vertical transmission (from Mom to baby during birth) is rare, but as you know it can happen. The chances are small, about 3% chance but there are others here that have gotten it that way.
I wouldn't worry too much about passing it to a future baby, there are precautions that can be taken and it is a small risk. Do you have the same genotype as your Mom?
It is possible you have contracted Hep C elsewhere along the way and not from your Mom. As you know from your Mom's experience, people can get hep c in the hospital, they can also get it in places like nail salons, tattoo parlors, ear piercing equipment, innoculation guns, etc. so you could have gotten it from another source other than your Mom.

Your doctor is right, they can not test down to 0, so with current testing methods it is possible for the virus to "hide" from the test. The old tests could count down to 600 and newer tests can test down to 5, but still can't test down to 0.

[jmjm530]

Sorry to hear about your positive test. I imagine quite a shock after 8 years of testing. Just to be clear, my understanding is that you never treated for Hepatitis C, therefore this would not be considered a relapse from successful treatment.

The possiblities as I see it are: (1) False positive; Different test sensitivities  (3) newer infection (4) Other.

(1) False positives do happen and my doctor always re-runs a positive (after previous negatives) before making a treatment decision. If you haven't already, you might ask your doctor to re-run the test. Quest's Versant HCV RNA Qualitative TMA is one good test for this. I'm also assuming they didn't order an antibody test by mistake this time. Even if you've cleared the virus, your antibody test would most probably turn up positive for life.

(2)Different test sensitivities -- do you happen to know what test you took this time and what was it's sensitivity? Is it different from the previous tests? For example, if your previous tests had a sensitivity of 600 IU/ml and your newest test had a sensitivity of 5 IU/ml, the possiblity exists that you were positive earlier, but just undetectible using the test you had.

(3) Newer infection -- this is always a possiblity as many report they don't know how they got the virus so you may fall into that category. Also, did you mom every successfully treat for the virus? If not, there's a slim possiblity you picked it up from a household item like a shared nail file, hairbrush, razor or toothbrush.

(4) Other -- Something like your doctor said, but I'm sure others will chime in here.

Sorty for all the questions at this time in your life, but hopefully they might help you find out what happened, and help us here understand as well. As to having children, you probably know the possiblity of passing the virus to your child is very small.

Since none of us here are doctors and haven't looked at your complete records, if you haven't already, you might want to speak to a liver specialist (hepatologist). They are usually found at your larger teaching hospitals.

Hope this all works out for you.


-- Jim

[jmjm530]

Kalio has a good idea about comparing your genotype to your mom's. If they're different, you can rule out getting it from her. However, if they are the same, that doesn't mean you got it from her since it very well could be coincidence.

[robynlee123]

The reason that i was tested often was because my mother asked me to get tested. she was terrified that she could have givin it to me and it was for her peaceof mind that i got tested. I do not belive that there is any way that i could have gotton this through any other ways. we never shared razors or anything else like that.  I am very much in shock. I just got the results yesterday. My dr is confident that i have the virus. But i am going to be going to be retested. as well i want to get my daughter tested now. even though i know that the chances are small and if the levels are too low it might show up as a false negative. but i would rather catch it early.  My mom has other health issues that prevent her from getting treatment. At this time they just try to keep her comfortable. i am hopeing that i get in to see a specailist soon and discuss what options are availible to me as i am not showing any syumptoms and i amnot "sick" i am just very scared and very worried that this has now passed on to my daughter as well. I also have great anger for the situation that i have been put in

[bobbyullc]

sorry about the test. i hope you do not let this effect wether or not you have more children. to base that on the tiny possibility they may get it seams an overreaction. if my mother gave me the choice of not being born or the possibility of some day having to take treatment for hepc i would opt for the chance of life. with the advances of drugs it should hopefully be an easily curable disease in the near future. the tendacy is to overeact to this managable problem.  please do not let it take over your life. the odds are overwhelming in your favor.
bobby

[bobbyullc]

sorry about hijacking this link to answer a question.
sorry but i studied the numbers on the alt and ast also and do not understand it either. the iv/ml x 10 is the formular to arrive at the base ten log number. i am am engineer and have a log calculator that can be obtained at target for 29$ and is easy to use. each log corresponds to a 0 in your count. therefore a two log drop on 414,000 will be 4,140 at 12 weeks. 3log is 414 ect.
good luck and keep up the research.
bobby

[doglover28]

I am sorry to hear that you tested positive.  However, like what was mentioned in the other post, maybe you just tested positive for the antibody.  Also, it is true about nail salons. I don't know if you get manicures and such, but it can happen

[robynlee123]

no i have never had my nails done... although it would be nice lol.
i wish i could say that these results arnt affecting me wanting to have more children. I know that there are ways to treat it but i dont know at this point... its not something that i can entertain the thought of. I am very scared that my own daughter will have to go through what i have an am going through with watching my mom slowly die from this. There are chances that the same conditions that my mother has occur in me that would prevent me from getting treatment as well. but i wont know more untill i see the specialist. and its very hard not to think the worst when its all i know.

[Algernon]

I can understand why you feel angry and upset right now but you don't need to panic.

First, you should be retested as Jim suggests.
Second, it sounds like your mom has been extremely concerned about about transmission.  That means she's probably been careful and, IF you have HepC, you may have gotten it from someplace other than your mom's house.  Try not to be angry with your mom.  I know it's a human impulse to feel that way but it sounds like she's going through a lot and really cares about your well-being.

Good luck to you.  I hope it turns out that you don't even have this virus.  BUT, even if you do, you probably don't need treatment right now (better drugs are on the horizon and you can wait for them) and it is highly unlikely that your daughter has this virus.  You can have more children with virtually no worry if your doctor is aware that you have the virus (IF you have it).  Most of us here have kids (I have two, both by C-section) and neither tests positive.

[robynlee123]

i have never been angry atmy mom... my anger is towards the govt and to other ppl that are involved in how this became a part of my familys life.

[MagTX]

I know how you feel, anger ( in my opinion ) is better than denial !   I was in denial for too many years, and was also Dx in my twenties....I also, have never been sick, or looked sick and still look great today....But I have taken excellent care of myself too.  Sounds like your ahead of the game since your not in denial.....Oh, and have more children if you want them, HCV should not be the determing factor for not bearing children...
I defiitely agree with the previous advice given here on this thread,  I would use all the information given here and go as far as you need to go to find the right help that you need......

Take care of youself,  Mag

[MagTX]

Hi,  went for the 12wk heptivax at Quest today.  You helped me with the log drop formula the other day....Are you using the numbers 414,000 as an example or does someone else have the exact vl as me ( coldn't help but notice this number )?  I'll be anxiously waiting for my latest reslts...
Thanks again for explaining logs and giving your support....

Mag

[Kalio1]

I can really relate to your anger, I got Hep C in a hospital during a surgical procedure, I was trying to get well and they gave me this. Your anger is justified I know but I have found that being angry only hurts ME and has no affect on those that created this problem in my life. One thing that helps is knowing that the medical community is not necessarily to blame for this, the elusive and tenacious nature of the HCV virus is to blame. Your anger towards the gov't. I can also relate to, if there was more awareness and education being done it would help so much. Milions have this and don't even know it.
Please let us know what your second test says, it does happen that people have false positives so it is worth testing again.
There are new treatments being developed that look promising, please don't give up hope for a cure that could help your Mom.
I know it is a shock and difficult to deal with this, but you are stronger than you realize and obviously a wonderful Mommy, you will make it through this and live to tell your grandkids about it someday. Hang in there.

[cuteus]

it would be useful to know the sensitivity of the tests used, as suggested earlier. Did you have only a qualitative test? We have a member, snook, who believes contracted the virus at birth, and for several yrs tested negative with the  tests he was given. Later on he tested positive. I think he was always positive but had a very low viral load that was not detectable by the earlier tests.  Find out the range of the tests you had prior to this last one, and compare it to the range of the positive test. If it is the same range, it is possible that if you had a low viral load for yrs, it might have just began to increase lately.  Repeat the test, get copies of ALL tests you have had, so that you can compare what was done.

[robynlee123]

most of my testshave been done over 3 rpovences and a few differnt citys... i have moved alot. my dr now who is also my mothers dr thinks that i have always had the virus and the levels are just at detectable levels now. my dr now is very hands on and wants to make sure that i understand everything that he is finding out and telling me. but with the inital shock of finding out yesterday i was a little distraught and dont remeber much about what he said after he had told me.  but i think for future references i will be getting copys of my test reuslts so that i might have them for my own refernce.

[prettydamscared]

Thanks for checking that out for me.  It is a little difficult to understand and I appreciate your trying.  Char

[prettydamscared]

I'm not Bobby but I'm the one that asked him the question about viral load and figuring out the % of log drop.  He was using yours as an example, just to clear that up.  Be well. Char

[prettydamscared]

Hi, I'm newly diagnosed too, April 4th of this year, and I can so relate to how you feel.  I've been researching and reading like a nut since I was diagnosed.  It completely totally sucks that one day your world is normal and the next you're diagnosed with a disease that is potentially fatal.  To make matters worse, as you said, you're now diagnosed with the same disease that is slowly killing your mom. I might have gotten your wording a little off but I think that's what you said.  That's got to be so hard for you.  

Even though everyone is telling you that your daughter probably doesn't have this, until she's tested and you know for sure that she's negative, you're not going to be consoled.  Try and do that as soon as you can.  I just had my daugher tested and she's negative.  Now, if I can only get my 23 year old son to test, I'll feel much better.  Please know that newer better drugs are being tested probably as I write this and are expected to be on the market by 2009.  It's an extremely slow moving disease and you'll probably be fine to wait for those treatments to come to market.  I would bet that whatever medical complications are causing your Mom not to be able to treat, are not going to affect you.  I can't know that, of course, but it just doesn't seem likely at all.  It really is true that there's only a 3% chance of this being passed to an infant in childbirth, so you probably will be absolutely fine should you choose to have more children. As horrible as this seems right now, you will get through it and I'm betting it won't be nearly as bad as it seems now.  The drugs that you'll be taking, providing you wait, are not expected to be that bad and they have an extremely high probability of putting the disease into permanent remission.  

I wish you all the best.  Let us know what happens with you.
Char

[bobbyullc]

coincidence,

by the by, 414,000 is a very good vl to start with. luck to you both. pray for the undectable by be happy with 2log drop.

[Mister beagle bailey]

Where are you?  Can you come out to play or is the wife keeping you on a leash?  How are you doing?

Beagle

[DoubleDose]

RobynLee,

Do you know if you have been getting Antibody tests for HCV, to see if you test positive for the HCV antibody?  OR, have you gotten viral load tests, either quantitative or qualitative?  I can't imagine that the doctors would regularly test you with PCR/ viral load tests.  I would think the standard HCV antibody test would be the choice.  I do believe there are false positives for the antibody test in some cases, and also please remember that many people have the antibody for HCV (test positive on antibody test), but do not have the virus.  Many people seem to fight off the infection with their own immune system, and shed the virus. The PCR will tell you whether this is the case.

That said, I am still very intrigued by your situation.  I must say I have read similar stories on other forums in the past few years, and have been very alarmed to hear about people who have tested negative for years (with a family member having HCV), only to find many years down the road that they now have HCV.  One account that I remember involved a man whose mother had died from HCV some eight years earlier.  He had been religious in getting tested every year or two, even after her death.  Around eight years after her death this man ended up testing positive for HCV, and had a viral load.  This story sent chills through me, because it implied that family members who seem to be just fine, and test negative, could possibly harbor the virus at some low level, or undetectable level, only to have the virus spring to life in later years.

This is a scenario that I have great suspiscions regarding.  I fear that the virus might transmit in a 'benign' way through casual contact, or intimate contact, and reside for years in salivary cells, gastric tissues, sexual organs, etc. at such low levels that it virtually cannot be detected.  Later this 'latent' viral infection might be capable of bridging the barriers and making its way into the blood and liver.  

Remember, this is only a CONCERN, and a theory that I would like to see studied.  There is currently NO medical support for this viewpoint, and little research that might lead to this conclusion.  Other than research reports of long term 'persistent HCV' lingering in various organs and tissues, after a patient clears the HCV infection, and sporadic reports like yours, of family members becoming HCV positive many years down the road, after association with a family member with HCV.

My only other observation that seems to support this scenario, is that in several long term HCV studies (Japanese, and Egyptian, I believe), it seemed that spouses were very rarely HCV positive, if they had a partner with active HCV, during the first twenty or so years of marriage together.  I remember percentages in the 1% to 3% range for infection in the 'non-HCV' spouse.  But after thirty years together the infection rates for the previously negative spouse jumped to the 25% to 30% range.  These studies have ALWAYS puzzled me.  If it is extremely rare for spousal sexual interaction to transmit the virus, then WHY the huge spike after thirty years????  Was it just a latent, low level infection that had probably ALWAYS been there in the partner, maybe in sexual tissues, or salivary cells????

These are provocative ideas, and have no real research support, or have raised no medical community concerns, etc.  BUT, your case, if it turns out to be a real infection, adds more fuel to the fire, as was commented earlier.  Please do let us all know the outcome of your testing.  You really need to take sensitive VIRAL LOAD tests at this point, to determine your status.

I wish you well, and hope this all turns out to be a false positive!!!!  If not, I think this will really turn some heads, and provoke some debate.  

DoubleDose

[doglover28]

This has just scared the &*%$ out of me. Both husband and daughter have tested negative. My greatest fear was that I gave it to them.  I was doing much better when I realized I hadn't,but after reading this thread, I am back to worrying myself to death again.

[doglover28]

Mine has never used my razors because she just started shaving after my diagnosis, but when she was born, they had to use a suction thing to get her out, and it scraped her head.  I don't know of my blood got on her.
This dang virus is just turning me in to a basket case.  Sometimes I feel I would be better off dead than having to deal with this worrying.

[Kalio1]

I don't find it alarming tht someone could test for years negative for HCV then test positive. The tests are more sensitive now, so testing neg. then positive can easiy be explained by the improved sensitivity of the tests, which is what her dotor told her had happened.
It is NOT some indicator that HCV sudenly reappears after long periods of time at all, it just shows the  medica advances and increased sensitivity of the test!

[cuteus]

doglover, no need to panic yet, we throw a lot of concerns, conjecture and personal theories here, that does not make them fact.  If you google long term svr, or hcv is not persistent, you will get some articles from natap.org that might calm you down.  It has not been proven that all svr are still harboring hcv somewhere. because most svr s do not get biopsies and tissue PCRs after treatment. Until we do, and get the results of this mass testing, we only have concerns, based on a few studies.

[doglover28]

Thanks....I am trying not to panic.

[DoubleDose]

I am not sure that I agree about the 'test sensitivity' issue you described.  I think that the HCV antibody test has been quite sensitive for a good while now, and has been in use for years.  This is not the 'viral load' test that we are discussing.  If RobynLee has been 'screened' annually for HCV, as she indicated, the tests would in all probability be the standard HCV antibody tests.  I can't imagine that annual negative results on this test would now show positive due to an increase in sensitivity for the test.  With the antibody tests you generally either have the antibodies, and they show up on the test, or you do not have the antibodies.  Save for the occasional false positive, the tests have been very reliable for at least ten or more years now, and pretty sensitive as well.

I think there must be some other explanation for this happening, and I am most hopeful that it is just due to a false positive test reading.  The idea of RobynLee becoming infected independently of her mother also carries what I would think to be very low odds, especially since she has been so aware of the disease, and how it is contracted.  

Let's all hope that this is a false result, because the alternative explanations are very tough to imagine.  

Any other thoughts on this unusual event are welcomed.

RobynLee:  Please do let us all know how your follow up tests come out.  And also, if you can find out which you have been taking over the years, and just recently.  

Best Wishes.

DoubleDose

[DoubleDose]

Again, I think we are talking about two different things.  The tests you allude to are viral load tests, and yes I am aware that many facilities still use a <600 IU, rather than <10 IU, etc.  But that is a viral load test.  Not an antibody test.

I would assume that Robyn has had the antibody tests over the years, since she tested negative for years.  The first test used would be the antibody test, and ONLY if it were positive would they do a viral load test.  So what I am saying is that I am surprised that Robyn's tests showed negative every year (since they were doubtless antibody tests), and then abruptly showed positive.  The antibody tests have been pretty much standard, and the same test for a number of years.   Again, I am not referring to the viral load test, which is what you are describing.  

My discussions about 'persistent HCV' (unrelated to this conversation) are not 'fearmongering' but only discussing what the research hes been showing lately.  A number of forum members have routinely pointed out and discussed the same research, and have the same concerns about 'persistence after SVR', since there seems to be a growing list of researchers raising these questions.  I do not think any of us want to 'stick our heads in the sand' when it comes to scientific research on HCV.  That said, I have repeatedly advocated tx for almost everyone facing HCV, and have no regrets that I treated.  I would not want to discourage ANYBODY from gaining SVR, sicne it is our best hope.  

We all just want the facts, and to understand the realities behind all the research  That is all.

DoubleDose

[Kalio1]

The >600 test is STILL being used in many faciities today so I don't know what you are saying, that you think all faciities test down to >10? You have to really push to even get the >10 test, it isn't available to everyone. Huge facilities like VA hospitals still use the >600 test too. She is very young and very well could have a viral load that could go undetected with a test sensitivity of >600. Her DOCTOR told her that was the case.
I think to make an issue out of "occult" virus when the one thing we DO know about it is it is extremely rare at best is a lot of "the sky is falling" fear inducing talk.
Your chances of getting hit by lightening AND at the same time getting hit by a bus are better than the chances you will have "occult" virus detected, and the chances of that ever having ANY impact on your health are practically nil.
IF reearch proves this issue to have ANY bearing on our health THEN it will have relevence. Until then it is fearmongering to focus on "occult" or "persistent" virus like it is really happening and affecting people's lives and it isn't.
It does scare people for no good reason just like the subject of "post tx" issues does because MOST people do not ever have these issues but before you tx it is yet another thing to worry about so people decide not to tx based on the idea they will be stuck with all these issues when the truth is a very small number of people are left with long term issues and those issues were most likely existing before tx and exacerbated by the tx not CAUSED by it.

[Kalio1]

There is no evidence whatsoever to back up the idea that you can pass this thru "casual contact" !! Or thru "other bodily fluids" and to suggest it is possible sares people unneessarily and increases the stigma level.

It IS possible she picked it up somewhere else besides from her Mother. There are a LOT of places she could have gotten it including in a clinical setting. Actually, studies DO show that people who have the Hep C virus years after clearing it were in fact reinfected by another source. The least likely scenario is having it "reoccur" I have only seen TWO cases of that ever happening and in one of them they did suspect reinfection, so that makes ONE confirmed case. That makes it incredibly rare.


Her tests for antibodies would show she didn't have the antibodies because she didn't have and then clear the virus.
We don't know what test she actuay had anyway, she wasn't clear so it is al speculation.

[jmjm530]

Not knowing exactly what tests she took, etc, all we can do is speculate on speculative theory, so I hope no one is drawing any conclusions from any of this. That said, I'm game for the game.

DD, there is another possiblity, assuming she was antibody negative all these years and then became antibody positive, or PCR postive, or whatever test she took. That would be a false negative antibody test.

This older study (link below) seems to suggest that a subset of patients can be antibody negative, yet PCR positive. Moreover, that on later testing, some of that subset can then become antibody positive.

Not sure if the antibody test has changed over the years, but since we're talking about testing over a 16 year period, not sure that would matter. The study also makes one wonder about the absolute safety of our blood supply since I believe they only test for antibodies but maybe this has changed.

LINK: http://tinyurl.com/ps68u

-- Jim

[jmjm530]

Kalio says: (Occult/Persistent virus) scare(s) people for no good reason just like the subject of "post tx" issues does because MOST people do not ever have these issues but before you tx it is yet another thing to worry about so people decide not to tx based on the idea they will be stuck with all these issues when the truth is a very small number of people are left with long term issues and those issues were most likely existing before tx and exacerbated by the tx not CAUSED by it.
--------------------
I'll just address the issue of post-tx symptons.

Yes, hopefully people will factor into their treat/don't treat equation the very real possiblity of post-tx issues. You know, if treatment was so absolutely safe, then why doesn't every doctor recommended treatment to everyone with Hep C? Treatment has risks and treatment has rewards, and post-tx issues -- long or short term -- are part of those risks.

As far as long-term post treatment issues being "small" in number, what are you basing that on? We've had numerous discussions here and a growing consensus is that there's very little follow-up being done on SVRs, or relapsers for that matter.

Are post tx symptons "most likely existing before tx and exacerbated by the tx not caused by it" -- I'm not sure you can make that blanket statement. But for discussions sake, let's assume that many long-term post tx issues are exacerbated by the tx -- does that make those issues any less valid?

Personally, I had some minor skin issues pre-tx that flared during treatment and continue to decrease my QOL. That fact that I had minor problems prior to treatment is no comfort that I have less than minor problems post treatment. Maybe same would have happend ten years down the road, but at least I would have had those ten years without the problems.

I sometimes hear that if your thyroid is already so disposed, it might go on treatment. But who knows in advance if you're the one with such a disposed thyroid? How many of us know exactly what is lurking right under the surface when we treat?

Respectfully, I don't think this is fear mongering, but useful to point out to those considering a treat or not-to-treat decision.

-- Jim

[Kalio1]

More and more treatment IS recommended even if there are no "signs" such as raised enzymes and NO VISIBLE damage in a biopsy because so often liver issues do NOT show ANY signs. To think because you feel fine and your enzymes are "normal" and your biopsy grade is low yet you have Hep C, is taking an enormous risk and I am not alone in that thinking, many in the field are leaning towards that attitude, much more than in the past. Liver issues are difficult to "see" until they have progressed to dramatic levels. This is stated over and over again when reading about the liver. I think it is obvious from people saying how they were "fine" then their damage advanced rather quickly. I spoke in depth about this subject with the doctor and his attitude is that anyone with Hep C has to realize that the damage can and does get by their radar and they are gambling with very limited info.
I think there are a lot of people out there "living" with Hep C who don't think they are in trouble but they very well could be in spite of their test results. If you ask a Heptoogist point blank, he will concede this fact. To believe that LFT's and no symptoms indicate you don't need to address Hep C is a real gamble. Often people are LOOKING for excuses to ignore their disease and to overblow things like "post tx" issues, which are not recognized by the medical community as an issue for the vast majority of people, is just a way for them to stay in denial about the TRUE level of damage Hep C is causing them. The fact that the testing abilities when it comes to the liver are so hit and miss aids their denial that having this virus can and does permanently injure your liver. There is NO WAY to really know your level of damage until an autopsy is done. Even a biopsy is limited in it's abiity to disclose the TRUE TOTAL condition of the liver.
I think those of you that advocate people waiting to treat should also disclose to them that you yourself treated and that you DID clear the virus at the same time. If you are wrong, and the person ends up not treating now and finds a few years down the road they are in trouble, then the advice did damage rather than helping them see the truth, which is the tests are not definitive until damage has reached a rather dramatic level.
I choose to err on the side of safety since there is no way of knowing if telling them they have time to wait is correct. What if you are wrong? We DO know that treating can halt the damage, treating can improve existing damage and in addition they have a chance at eradicating the virus on top of that. Or they can wait and pray they aren't the one who will progress suddenly. Prayer is a very poor health tool but basically that is what they are going on, a wing and a prayer. There is NO WAY to know who that will happen to, period. I'd much rather err on the side of safety than to advocate someone make that decision with such a limited abiity the medical community has at this point in time to know the TRUE facts of the condition of their liver.

[Kalio1]

If we go by your theory, that she had only the antibody test, then that means she tested neg. for the antibodies for 8 years then tested pos for the antibodies in year 8, which woud mean she had and cleared the virus not that she has it now.
I think it makes more sense the doc was doing a VL test because he KNEW her Mother had Hep c, the test was not very sensitive, he upgraded his tests and now it shows up. That makes sense.

[cuteus]

gosh, I wish people would be more specific when they post! look at all this speculation, just because a person did not specify if she had the antibody or the viral load test!

jm, this statement made me wonder:
"As far as long-term post treatment issues being "small" in number, what are you basing that on? We've had numerous discussions here and a growing consensus is that there's very little follow-up being done on SVRs, or relapsers for that matter"

maybe so, since I am 18 months post tx, and have not seen my GI for almost 8 months, since the ultrasound results discussion, and they have not called me to come for my missed appt., but if I had continuing issues due to tx, I would be at my dr's office regularly and if there were large enough numbers of patients coming back to his office with similar issues, I would think he would have to address it with someone in the Health dept. It is then possible that the issues are not severe enough, or in numbers large enough for anyone to notice and pursue. Of course the opposite could also be true, but until 20/20 or Dateline does an expose on the huge amount of post tx problems that have not been addressed by the medical establishment, I would have to think that they are not as they appear to be in these boards. My view, right or wrong.

[Kalio1]

The risks just are not equal. The risk of having post tx problems that are permanent, by all accounts, other than on this board, are very small whereas the risk of "living with" Hep C and delaying treatment are sizable. The disease is nonlinear so you are taking a BIG risk compared to the risk of post tx. problems. To me, the post tx problems IF I cleared the virus would be hard to deal with BUT I would know I had cleared the virus, my MAIN goal.
It is important, if you have existing issues to recognize that there is SOME risk the tx could increase them which seems to be what you are dealing with. There is some risk to taking ANY meds at all but the risk of having Hep C have it's way with you in my view are BIG.
To repeatedly mention post issues as if they are common to me IS fear mongering because they are not common at all yet around here they are mentioned in the same breath as treating as if the risk are equal and if you are new to this game, it could be enough to scare you off of treating and fear should not be a reason not to treat.
By the way, how are you doing? I hope things are easing up for you and energy is returning.
I am plugging away. Had a good run there for awhile then shot day kicked my *** but today was ok, tomorrow will be better.

[Kalio1]

If you are talking to me, you did miss it because I ALWAYS say that some choose to watch and wait if a post is asking about treatment. The fact that I think it is very risky to do so in light of the limitations of the testing methods available is the point I try to get across to people who have just found out they have it or to others who know but choose to believe it won't possibly continue to harm them and shorten their lives. If the testing methods were surefire, I would be much more inclined to advise people to wait if the tests were 100% on their abiity to determine damage.

[jmjm530]

OK. But you also suggest bringing up post-tx symptons is fear mongering, so not sure you make a very balanced case for the other side :) Anyway, I'm done like done, until next time of course :) Hope treatment is being kind for you.

-- Jim

[jmjm530]

First, I don't suggest anyone treat or not treat -- simply try to point out the risks/rewards, and sometimes indicate what I would personally do.

As far as disclosing my own treatment -- C'mon -- that is the worst kept secret in the world :) But seriously, I do post the fact I've treated often in the context of risk/reward decision making but more important I try and differentiate between those with significant liver damage and those with little or no liver damage. I had significant liver damage when I treated.

As you are well aware, treating those with little or no liver damage is controversial in the Hep C medical community, as it is here. When appropriate, I try and let newcombers know that TWO sides of the issue exist. You also know two sides exist, why don't you ever mention that in your posts, or maybe I just missed it?

In conclusion, I don't believe there is a "right" or "wrong" so I'd prefer in the future to just put out my thoughts and opinions and not to debate the issue back and forth. This is not a cut and dry issue but of course you're free to disagree but I've said my peace.

To change notes, I hope your current treatment is going well. Did you decide yet on treatment length or are you still waiting for PCRs?


Cuteus,

Yes, speculation on speculation, but sometimes it's fun, unfortunatly not very useful to the person posting and those trying to make treatment decisions from it. LOL. What did you think of studies indicating you can be antibody negative but still Hep C positive. Not very comforting in terms of our "safe" blood supply.

What is the "reality" of post-tx symptons -- your guess is a good as mine, as we both read the same posts, look at the same studies, etc. Frankly, I hope you are right and I am wrong.

== Jim

[jmjm530]

Kalio: To repeatedly mention post issues as if they are common to me IS fear mongering because they are not common at all yet around here they are mentioned in the same breath as treating as if the risk are equal
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Obviously, there a lot of us that feel that the risks of treatment (whether long term/short term, etc) do outweigh the rewards or all doctors would treat everyone all the time regardless of genotype, stage and odds of success. So...if you want to categorize us all as "fear mongers" then I guess that leaves the other side as "fear ostriches" , in other words with head firmly planted in the sand when it comes to the risks of treatment. LOL.
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Physically I'm feeling stronger than ever and thanks for asking. GERD (reflux) is also better and I can finally eat a normal meal without major consequences. It's been a year that I haven't been able to.  

Still have lingering skin problems that the interferon flared. Hopefully, they will subside with time. Memory and some cognitive problems (word recall) remain and hopefully those too will resolve with time. Also a little of what I liken to "shell shock". Treatment was very rough on me and that's probably natural.

Hope you feel better soon and glad you're able to run, etc.

-- Jim