HOW MANY SVR FOR TYPE 1'S

hello everyone. hope you have had a nice weekend and all is well with you and yours. i am just wondering if there are any type 1's out there that have cleared. i was reading the thread that was posted down the way about svr for type 1's and i'm wondering if they stayed svr. and do you know any type 1's that stayed clear, for more then a couple of years. i heard somewhere that even though type 1's clear, the virus eventually does come back. i don't know if that is true, so i'm wondering about it. i do not mean to bring this up to discourage anyone i just want to know if any type 1's cleared and stayed virus free.

[jmjm530]

While the percentage varies according to which study you read, in general about 40% or more geno 1's achieve SVR. By definition SVR means non-detectible six months post treatment. It also means, again depending on who you read, a 97-99% chance of remaining SVR. I don't believe this 97-99% is any different from any of the other genotypes.

So directly to your question, I would imagine 40% or more of us here SVR as in the general Hep C population. And a better percentage can possibly be achieved with individualized treatment including changing drugs, dosages and/or treatment term.

I have never heard that "the virus eventually comes back" in geno 1's, so unless someone shows me something credible otherwise, I'd say it is misinformation.

-- Jim

[cuteus]

the problem with frequenting several message boards is that in addittion to good information you get a lot of rumor based "data". WHenever I encountered off sounding statements, I do a web search on the concern. In this case, for example, if you do a search on "long term SVR for HCV" you get many results with factual data, including this article:
http://www.medpagetoday.com/Gastroenterology/Hepatitis/tb/2152

[fresnoborn]

when i was talking to my gi he told me that i could be "cured" and then i asked him "cured? or just dormant" and he said "cured" and then i asked "will it come back" and he said "it could but i have seen many type 1's stay cleared." so i have that doubt in my mind that it "could come back".

[jmjm530]

Just to put your GI's statement in perspective -- yes, it "could come back" after SVR but the chance of that is between 3 and less than one per cent depending on the source. And even those numbers may be high since a certain percent where the virus comes back may have reinfected themselves after treatment. The overall point is that once you SVR -- geno 1 or any gentotype -- in the overwhelming majority of cases you stay SVR -- so don't worry so much. :)

Hope this finds you well.

-- Jim

[avidreader]

For what it's worth my doc said I had a 40% chance of clearing at treatment onset(geno 1b.) He said if I cleared at 12 weeks the odds that I would achieve SVR went up to about 70%. He said if I did achieve SVR at 48 weeks I stood a very good chance of remaining 'virus free' for the rest of my life but he did caution me that it was "an insidous disease, and that there are still a lot of unknowns" and acknowleged that he had a few patients who had cleard and been clear for more then a year then had the virus 're-emerge.'

[suzieq2]

As a 1b nonresponder my research has impressed on me that the actual percentage of svr in us is about 15 %.One expert article I read, the Dr. would not use the term cured. He referred to us as in remission. I believe I have had my HCV for about 20-30 years, and it has been in remission. I believe my immune system has kept it in check, that is why vl was low, and my biopsy stage was minimal. I went thru an EXTREMLY stressfull time in my life and I believe that depleated my immune system, and thats what kicked off the active virus.The remission, rather than cured makes sense to me because of the high incident of relapse.My opinion is that at this point in time there is no cure for Hepatitis C.I am sure there a others who feel the dicrimination from Drs.as nonresponders. They do not have A clue what to do with us.We want to so badly believe in higher percentage rates of svr, because without A drug company coming up with a better drug, our future is grim. Remember that the clinical Trial results,are going to be manipulated by the drug manufacturers in their favor, to sell drugs.

[cougareyes]

This is another reason why I believe one should not take these meds unless absloutely necessary. Cure, remission, or ?; if you have advanced fibrosis or cirrhosis: any break will be welcomed.
I believe fibrosis can be reversed, so for me at an advanced stage 3, I'll welcomed any break from this virus.    Peace

[DoubleDose]

Actually the SVR rate for type 1's has been getting closer to 50% to 60% in the past two years or so.  The 'relapse' rate for type 1's , which is unusually high as you note, is generally the relapses right after ending therapy, not the relapse rate for those clear at 6 months post therapy.  The numbers coming out in large scale studies for relapse AFTER being undetectable at the 6 month point after ending therapy, seem to be in the 99%+ range.  I don't think the issue is relapse for type 1's, if they get the initial SVR,.  I think the real issue is that of 'persistent infection' at very low levels after SVR.  In other words, they remain undetectable by PCR, and are for all intents and purposes 'cured' of the virus, with a durable SVR...BUT....may have some sort of dormant, or very low level, 'in-check' infection sitting there under the radar screen.  This is the current concern in much of the HCV research community, and to be honest, no one has a clue what the implications are.  It may not be a problem.  Then again, it could cause all sorts of ongoing immune system related disorders, and organ problems if it truly exists.....only time and more study will tell the story.

In the meantime, you should really try to get YOUR SVR, so that your liver can be spared the ongoing damage of the active infection.  Customized, comprehensive therapy regimens can often work even for difficult responders, and some that were deemed to be 'non-responders'.  See a very experienced HCV doctor, one with a track record of getting lots of SVR's in those who had previously treated and relapsed, or who had not responded.

DoubleDose

[DoubleDose]

I would say just take a cross section of similar aged people who are HCV negative, and who have no major chronic health issues and compare their perceived QOL to a comparable group of SVR's who had little or no liver damage.  Also, you could ask the SVR's how they felt compared to life before HCV.  Even with the aging issue I think there should be a significant change in health compared to how they felt when they were HCV+ .

DD

[cuteus]

the article I mentioned above, uses the term "cured". We are indeed cured of hepatitis with SVR. The virus is not causing the inflammation anymore=cure. Hcv anywhere else can't be called hepatitis.
"Our results demonstrate that SVR, as defined by a commercial HCV RNA assay, is long lasting, and that clinical relapse is extremely rare in patients who are 'cured' of chronic hepatitis C," the authors said."

[DoubleDose]

I agree with everything you said above.  The reason I inserted the comments regarding 'persistence' of HCV infection was in response to SusieQ's comments about remission rather than cure, and comments her doctor made regarding HCV being in remission.  I think the 'viral persistence' issue may be what she is hearing when doctors refuse to use the word cure.  I did state above that it may mean nothing at all....or could end up being of significance.  

The doctors that I see are also firmly in the 'cure' camp, and have been steadfast in their insistence that the virus can not infect most other tissues, especially CNS and nerve related tissue.  BUT on a recent visit to one of my treating doctors, he did concede that the virus 'MAY' turn out to be somewhat more like shingles, chiken pox, herpes, etc...in that it MAY be lying dormant somewhere in the body and could possible come out later in life after some extreme immune system compromise.  Now I thought THAT was strange to say, in light of all the powerful claims to eradication and 'cure'!.  I debated a bit further about the implications of all this, and basically was told that it is an 'ongoing body of knowledge', and that many things have not been either proven yet, or conclusively agreed upon.  

In other words, we must all agree to disagree, and wait for further research.  Still, we all know and see the benefits of SVR, and it seems durable from what we know, so I agree, the SVR is what we have to work with.  I would do it over again twenty times, if I had to, to get to where I am today.  That said, Am I totally relaxed and confident that I am now completely 'cured', and that there should be no possibility of future problems????  I really am not quite there yet!

Thanks for your input.  Keep up the great tx work...sounds like you are almost there!  Best of Luck!

DD

[doll face]

I am happy to report that I was one of those 1A's that have been CURED.

I did relapse after my first round tx. 2 months after finishing 48 weeks of Pegintron combo. Then I did 72 weeks of Pegasys and now I am 1 year and 1 month post tx and still clear. After 9 months clear my doctor told me to consider myself "CURED" and he is one of the top specialist in the country, and also the head of Hepatology for Henry Ford Hospital (so if he can use the word Cured, than so can I)

[Tonyz]

Here is an interesting read from Dr. Ben Cecil

<a href="http://www.hcvinprison.org/forum_new/topic.asp?TOPIC_ID=162"> Dr Cecil thoughts on Long term SVR Status.</a>

http://www.hcvinprison.org/forum_new/topic.asp?TOPIC_ID=162

Also his use of the word "CURED"



              Blessings................TonyZ

[cuteus]

I am glad he is still using the term. that is how I see it, cured of hepatitis. any other jobs that this virus is doing "under the table" has no effect on the liver. Dr Cecil even said I was cured with my 3 month neg PCR. I was wondering if he had changed his view on the term. As long as it is not in my liver, I am HCV free.

If it affects other organs and is eventually proven, can they still call the virus hep c? I guess if they call the chicken pox one varicella when is shingles, they might have to call it by its first name...but this might never have to be discussed.

[jmjm530]

Suzie,

I haven't seen SVR numbers anywhere near 15% for geno 1's since the early days of mono therapy. The actual numbers are 40-50%, maybe higher if you add in the individualized/extended threapy many doctors now use. I don't want to put you on a the spot, but do you have a reference for that 15% number. It's so off the accepted norm I'm concerned it could wrongly scare many new to Hep C from treatment.

DD,

Again for those new here, DD is mixing up two concepts in a single post that a lot of us here have since become familiar with.

Concept 1 is that SVR is durable across all genotypes-- around 97-99% once no virus is found in the blood six months after treatment ends.

Concept 2 is the idea of the occult virus. And while it's true that it is a current "concern" for some in the hep c medical community, equally true is that the implications aren't known. In other words, whatever "non-detectible" virus may be remaining may have no significance whatsover. My hepatologist, and many others aren't concerned about the occult virus at all. Nor are many of us here anywhere near the extent that DoubleDose is.

DD, You know I appreciate your posts on occult virus but here I think it's muddying the waters given the original post. SVR is still considered a "cure" by the majority of hepatologists. After all, once SVR fibrosis (liver damage)  in the majority of cases is either stopped or reversed and one is no longer contagious.

-- Jim

-- Jim

[cuteus]

maybe I should write what I remember, before I forget for good.
I actually would like to see if there is any significant difference, as I am one of the symptomatic, low damage group. I guess they need to include the pre tx QOL in there somehow, with another control group....or the same group could be used with both post and pre tx. Too complicated for my non research oriented brain.

[cougareyes]

When you ask someone how they feel, it all becomes relative. I don't think any of the extra hepatic conditions that some complain about is any different from non HCV persons. HCV can be tracked to liver problems, absolutely; and the liver does so many functions in the body. Who knows what problems can be caused when your liver function becomes compromised.
I believe when we stick to treating HCV as a liver disease while using the currnts meds; we may have a greater chance for success. When people think combo tx is going to help their arthritis, depression, etc; they may find the sx of the meds to make these conditions worse. The meds may also stress the body to the point of bringing on other conditions; thyriod, heart, etc. If the decision made to treat is to improve liver function then that becomes a goal we can achieve.
With improved liver function, your overall health can't help but improve. Some of the other conditions a person might have may just have to be treated for that specific disorder, not HCV. Much to some's dismay, HCV is not the root of all your evils. Just one man's thought.... Peace

[Forseegood]

Really pretty much agree with you. I also think that the onset of symptoms of HCV correlates to a lot of us reaching our late 40's and early 50's (say, if you'd already had the disease for 20 25 30 years) so it's really hard to tell if some of these other maladies, sundry aches and pains, whatever, is the simple aging process, the simple aging process aggravated by the HCV, menopause (in women)...there could be so many different things going on within one person alone. I have plenty of friends who are HCV free who complain about some of the same things I do...who are around my age.

I will talk to people who have finished treatment and cleared, and they are thrilled to find out that certain things they were attributing to old age, etc. were really the hcv all along, and now they are feeling better than they had in years. Conversely, I'll talk to people who have cleared and many of their expectations are dashed once they find out that the arthritis, fatigue, etc. is still with them and/or maybe even worse post tx, even after a long time. And the people who don't clear, seems like they have varying stories to tell as well.

Everything about this disease, treatment, it's such a big grap-bag, I guess all we can do is hang on and ride it out and play the cards we are dealt. (Sorry for all that metaphor mixing.)

[beamishboy]

thks 4 the posted info--i sure hope that hep-c is not akin to herpes in its ability to re-manifest............in fact i was hopin that my ingestation of combo would offer an xtra plus of riddin my body of that 'minor'&Reoccuring irritant...After radiation 4 testicular my urologists asked 'bout my chronic urinary tract infection--'i figured rads did that little bugger in......by the way,i think i got hep-c at the same time as urinarytract infection.....sellin plasma at a very poorly run clinic in el paso circa 1975--drunken doctor,untrained staff--they remove whole bloob,centafuge,remove plasma,replace whats left,then do it again--all for 15 measely bucks--ohhh what a fool i was!!!!--young&dumb&strong,thot i was invincible--what me worry????? quart a beer aftr sure worked quik--i was explorin the underworld,sure did get the full 'exposure',eh?------by the way,whats that about 'woodchuck" in the study,,r they really useing them critters,we useta shoot'em outa hayfields soo many years ago....back when there were farms all round the place...good old days-my mind isa wandering again,sorry

[jmjm530]

Thanks for responding in your usual open and positive manner. I probably used the wrong word "muddled" in my previous post (a bit cranky last night :) ) but just wanted to point out to those new to the topic that we were talking about two somewhat different things. Like Cecil's post below, the topic of dormant or occult virus fascinates me more and more as it seems to go to the heart of actually what tx does (or doesn't do) to the virus.

I spoke to my hepatologist today regarding my tx term and he said that the best way to kmow when to stop treating is by some test that is only available in one or two research labs in the world, but without this test we're all somewhat in the dark -- as he then suggested another 4-weeks to my tx for a total of 52 weeks. Drat. This experimental test measured something about different t-cell responses that I didn't quite understand. Apparently one response is better than another which I think he called a "spikeda" response as opposed to a more durable one.  I may ask him more about this at next months visit. So does treatment really kill the virus or does it allow the immune system to do the job. A lot more questions than answers.

-- Jim

[Oreos]

I'm a former 1a and according to my GI, cured.  One year and 2 months post treatment and no more damage is happening to my liver.  My ALT is 11 and the rest of my hepatic function panel is in normal range.  My GI told me that my chances are 99%+ of staying clear forever and to get on with my life.  It's easy to slip into worry, but it doesn't add any value.

If, at some future date, my situation changes, I will deal with it then.  For now, I relish my time with friends and family and being able to live my life to the fullest!

Cheers,
Gail

[DoubleDose]

I am also two years SVR , Sept. 2005, and was a 1-B.

I am curious as to your post-tx recovery, and symptoms if any remaining.  Did you experience 'interferon hangover'?, do you feel better with each passing month?  any ongoing issues, problems, etc.?  anything that feels like the old extra-hepatic sx?  How is your mental outlook?  
I hope you are feeling great!  Congratulations on the now long-term SVR!!!  

DoubleDose

[cuteus]

that would be an interesting research study. I don't know how they can measure things that are also related to aging, like arthritis and cognitive decline and assess what is causing it for sure. They would need a control group of baby boomers that were never exposed to HCV or person with hcv or the lifestyle of the happy go lucky. Mission impossible, it seems. any ideas?

[silverangel]

Does it matter how high your pre tx vl is...6.4million

[cougareyes]

There is no legimimate source that states that people with HCV have developed these disorders any more than the general population. I personnally know people with some of these disorders that don't have HCV, I know 3 people with HCV and they have none.
That really wasn't my point, my point was that regardless of what you have; combo tx is not going to be your cure-all. And I find alot of people disappointed with tx because of that. As I mentioned before, with your liver being such an important organ; the rest of your body has to suffer if it's not working properly.
Diabetes has been mentioned around here so much, the fact is there is a diabetes epedemic in the U.S. right now. And it has nothing to do with HCV. Yet if your liver isn't functioning properly and a person has a bad diet, sugar, alcohol; the same things that contribute to a non-HCV person to develope diabetes. Then they are probably going to develope diabetes.  Peace

[Forseegood]

Just wanted to say, and this happens a lot with me, that I agree with both you and Cougar. You both bring up valid points. I don't want to underestimate extra hepactic conditions from HCV. I've even read some recent studies where it seems women suffer these conditions even more than men, generally speaking, even with low liver damage.

Seems the HCV plays havoc with hormonal regulation most probably. I've told my story before: about the time I went to some Grand Poobah hepatologist, with tons of sheepskins on his walls from prominent colleges...who told me that he was pretty much convinced that the only people who get symptoms from HCV are cirrhotic and/or ESLD. Any syptoms (symptoms) I had failing that, were most probably from some other etiology....Didn't even acknowledge liver pain..That's why he didn't disable people for S.S.unless you fell into these categories. What a horse's ass...Only one among a few other stories like that which made me realize that doctors are only human like the rest of us and they are not all good or not all right.

[DoubleDose]

Boy are you right on target.  Many of the smartest and most highly credentialed doctors out there are absolutely blind and deaf to what the HCV patient has been saying and experiencing...because it has been ASSUMED that the virus is chiefly a liver virus, and that people with HCV are dramatizing minor complaints that everyone else suffers from.  They are totally off base, and if you listen to what most people who have had HCV for 20 to 30 years have been dealing with, you get a pretty homogeneous set of ailments.  Most have had extreme fatigue, brain fog, arthritic or joint problems, sicca syndrome, depressive type symptoms, dental issues, and on and on.  I knew I had a major problem decades before I was diagnosed, chiefly because of all my chronic extrahepatic manifestations.  This was back in my 20's, when I should not have had any of this stuff going on.  The ivy league doctors often are entirely academic in their approach, rather than 'scientific/observational/experiential.  They believe that because the current body of knowledge says it should not be so, then it can not be so.  I have heard many doctors claim the URQ pain cannot exist, the liver feels no pain you know!  So why do so many with HCV regularly experience this sort of pain?  Even before they know they have HCV!  Many doctors are too lazy intellectually to really follow a line of reasoning to see why, where, how, etc.  They are not scientists, but more like highly technical mechanics who can 'tune up' your 'car' but can't really tell you why that cylinder is pinging, or the valves seem to be tapping.  We are left with a vast array of medical issues, that are probably caused in large part directly by the virus, and are left with the comment: Don't worry too much about it...it's something many people complain about....probably has nothing to do with the HCV....  and on and on.
When you read some off the stats that show HCV being a major suspected cause of new arthritic problems, of Sjogrens Syndrome-like eye and salivary problems, of severe fatigue, of cryoglobulinemia, and a newly suspected cause in some cases of diabetes, lymphoma, and various other systemic diseases...you wonder how a smart, highly educated doctor can be so cavalier in blowing off patient complaints, and assuming that it is all in their mind....or they have read too much and are imagining odd symptoms...etc.  That is pathetic as far as professionalism, and scientific approach.  They should be spending more time trying to understand why these things are happening and what can be done to deal with these issues.  
They will laugh at questions about 'viral persistence',... until their favorite professional journals tell them that it may indeed be true.....then they will TELL YOU that you might be dealing with a new phenomena that they have uncovered...called 'viral persistence'.  
Now WILL they remember that they heard the question first from you????  Yes, they will say "you know, you were right after all about this issue...I just was not really listening too seriously...."     Right after Hell freezes over!

Sorry for the cynicism, but this issue really pushes my buttons.  The ivory tower approach to medecine gets us nowhere, and is a poor excuse for science.

DoubleDose

[Forseegood]

Really beautifully put DD. In Buddhism there is a saying...show me the smartest man in your village...and I'll show you the biggest fool...Sometimes when we are too caught up in some type of vast knowledge base we think we have, or some scientific method, what have you...we get lulled into thinking we've learned most all we need to know because this has been codified by some "body of experts." This is not the way to an open mind.

Thankfully, there are some docs out there who truly listen to their patients...who don't employ this self protective attitude of "well, I can't answer that with all that I know, so you must be hysterical and bringing on your own symptoms" type of write-off. After all, if they truly knew all that much, there wouldn't be any chronic illnesses to contend with. That's why I want to work "with" my doctor, I've never been the type to blindly listen to any type of authority....not when the stakes are this high for me.

[Galen]

I WAS a 1B.  Still clear 2 years post tx in September.

[DoubleDose]

I think that another good way to look at the 'cured' vs. persistence issue is to consider the ongoing health, quality of life, and patient perceptions of symptoms after successful therapy.  I would be very interested in seeing longitudinal studies of SVR's for three, five and ten years after SVR, especially those that were very sympromatic before SVR but who had minimal liver damage.  Why?  Because that would rule out liver problems as a possible cause of ongoing poor health, fatigue, and other extrahepatic issues.  I will be curious to see what percentage of this group (SVR and no /or/ low liver damage) experience a full return to perceived good health.  Will the fatigue, brain fog, arthritic symptoms, depression, etc. persist in some, or many of these persons?  This needs to be tracked and studied, because it may shed light on whether or not 'viral persistence', or other organ infection (compartmentalized infection) is really something to consider.

The newer future therapies, when inhibitors are combined with inf. tx, will also give us a clearer idea of the reality of 'cure' and long term return to full health, mainly because the tx periods will be shorter, and more effective, so we will not expect to see a great deal of 'interferon hangover' or long term after-effects from tx.  The post-tx life for SVR's should be clear cut, and provide a good look at what kind of relief is provided.
If we see continuing extra-hepatic type symptoms in these groups, many years after their SVR is achieved (especially those with no liver damage), then we will have to assume that there is more than meets the eye with this virus.  

I still would like to hear from our SVR's out there, on a long term basis, to see what the general level of health and QOL is like for them, at the 2 year, 5 year SVR points and beyond.

DoubleDose

[fresnoborn]

thank everyone for commenting on my question. i got alot of input and took it as i read it. let's see how it goes.

galen: congratulations on 2 years hcv free. now that is something nice to hear. lol

[cquest]

Sorry to jump in but I just had to tell you all this...I was babysitting my grandson, he was in the tub, I was taking the razor out of the tub and said to him 'You know NEVER to EVER use anybody's razor or toothbrush don't you?' and of course he asked why and I said 'diseases' and he said 'even my Mom?' and I said yes of course, and he said "my Mom uses my toothbrush all the time.' and of course I said 'oh no no no, never use anybody elses toothbrush' all the time conceiling my absolute horror!!!! She KNOWS about this disease and still acts like it doesn't exist!!!!First of all, how gross, second of all are people that stupid that they don't get it? I heard her friend ask if she had an extra toothbrush the other morning and asked if she could use hers and I jumped up and said 'NO!, that's how you catch Hep C! What is wrong with you people?!!??!!' and they both sort of laughed...I was shocked!!! I can't believe it!!!! My daughter may have this disease simply because of sharing my razor and could be putting my grandson at risk!!!! I talked to her the other day and told her to get tested...I am very upset!!!!!
Cin

[cougareyes]

In 1980 I was 19 years old living my version of the "summer of love". I was in San Francisco and there was new killer disease around, it was called GRID(gay related immune defiencency). Those of us that weren't gay thought we were impervalous(?) to this disease. It was called the gay cancer, now it's known as HIV.
That's the same summer I got non-A non-B hepititas, we call that HCV now. The story above is way to common, a guy at work got cut the other day, a co-worker went in to help with the blood without any real precautions.
Just as earlier living in a state of denial that you can't get HIV because you're not gay. Today they still want to believe as long as you don't do drugs you won't catch HCV. People better wake up or we're going to be in alot of trouble.    Peace

[friole]

suzieq--
I have seen that 15% reference recently.  However it was the percent of individuals that clear the accute viral hepatitis  spontaneously when it is first contacted.  The other 75% end up with chronic hepatitis C (don't ask me why those numbers don't add to 100%).  Could that possibly have been the reference that you saw?  The term SVR was never used for the 15% that cleared spontaneously - that is only used in reference to treating, I believe


cquest - unbeliveable about your daughter - still at that invincible age, eh?  I am still trying to figure out how the razor blade got in the bathtub......active little guy, I guess.  My daughter-in-law walked in the bathroom a month or two ago to find her 5 year old "shaving" like dad --- blood all over.   What are these little guys thinking?

spud --- yeah, I buy my toothbrushes in bulk too.  --- like to leave a couple of spares in the spare bathroom for guests.  Kind of hostess with the mostess- like, I guess.

friole

[cquest]

I was worried about him using the razor for the exact reason of him trying to shave, he is 11yo & half Brazillian so he is somewhat 'matured' shall I say, so it is only a matter of time before he starts tring to shave...also, like many women, I leave the razor in the shower to shave my legs which is no problem usually since my husband never touches anything I use like that, we even have separate toothpaste and holders (always have, don't know why, well I do know why, he hated the way I squeezed the toothpaste for one thing)and I am SO thankful for that. But I am amazed at the sheer fact that my own daughter would be so careless! Really freaks me out...The good news is my other daughter that DOES have HepC is finally going to get her lab work, thank God!
Cin

[cougareyes]

When I make a statement regarding any studies, when I say legitimate sources; I am talking about medical researchers and facilities with a known respected reputation. As in John Hopkins, UCLA, the Mayo, and the like.
There are so many published studies, especially on the internet; that really have no reputable basis. This is very disturbing as alot of people are trying to base there care on what they're read on the internet.
Many fringe researchers, doctors, et al are publishing studies with such schewed data that it is so imperative that everyone checks and re-checks the sources of their information.
Just one man's opinion....Peace

[cougareyes]

I always appreciate your point of view and wish you the very best. Anything to do with your health can become so complicated. I'm sorry if it seemed as if I was picking a fight with you, I probably was; feeling a little raging today.   Peace

[cougareyes]

That stat on HCC sounds scary until you figure in only .5% of people with HCV develope HCC. I wonder what the other 99.5 people will die of, and that the average lifespan of those who die of HCC is only shortened by about 10 years from the national average.   Peace

[fresnoborn]

i know how you feel. my 18 year old daughter has already been tested and thank god she was negative but last weekend she came to stay with me and she used my shower, and yes, my razor. i got after her about it and she insisted that she didn't use it but her armpits and legs were freshly shaven. i explained to her that she could get hepc from using my stuff and she just kept denying it, now i have to go and have her tested, AGAIN! i was really disappointed in her lying to me but i guess she was afraid to admit it to me cause she saw how upset i got. she doesn't seem too concerned about it. from then on, i just throw away my razors after i use them. lol

[MissMiss]

I feel the need to add my 37 year health stats since contraction.  I was 13 and had my appendicts out.  Doc left pieces of steel from the knife which I had taken out some 15 years later.  Three years or so after the appy I started having pain where I now know the liver is.  Went to a Dr. who looked at me, saw a 16-17 year old girl, assumed promiscuity and spread my legs.  I kicked him and said it doesn't hurt there, it hurts up here!  Got a certified letter to never see him again.  Started getting all kinds of bladder, pelvic and lung infections.

Previously, I was a farmgirl/tomboy with great grades in school.  Riding, hiking, skating, running. Always tanned beautifully, never, ever burned.  You get the picture.  Now, my grades are slipping, just can't think clearly all the time, lethargic, depressed.  Even was put in state asylum for two weeks.  

I am now 20 and have DDD.  Where did that come from?  Severly depressed, brain fog galore, hurt all the time everywhere, can't remember a friggin thing, burn every summer, lucky if I can walk a couple blocks.  somewhere in there I had three kids.

37 years later I am in line for two disc replacements in lower back, weird arthritic pains everywhere that seem to hurt 10X more than they should, brain fog just terrible.  Also had am MRI of shoulder to rule out a tear that showed abnormal bone marrow recently.  That's how I found out about HCV.  I could go on.

Anyway, noone is ever going to tell me that the change in my life is not directly related to contracting HCV from the knife weilding surgeon.  Everyone's body deals with things in their own way.  Our outside stimuli are all different; family, food, chemical exposure, social life, etc.  So, we will react differently.

My point:  Don't doubt the fact that HCV can make physical changes in our bodies from the very beginning.  Always listen to your body and know it by heart.  You are your best advocate.  I always tell people we need to know more than the doctor if we want to gain our health back in any situation.  I can usually go to doctor and tell him what is wrong before he DX anything and am usually right.  All because I know myself better than anyone.  Don't let anyone take your faith in yourself away.  

Well, I have vented enough.  Hope I haven't hurt any feelings and maybe someone here has been helped or encouraged.  

MissMiss