Post Treatment Question for Hep C

[Gabza]

I was treated in 2003 and came back negative.  One year after the treatment
I was again negative.  I probably need another test, but I HOPE it's still
negative.

When they test (at least in my experience) they are testing for viral load.
I'm not aware of them testing for antibodies, because (at least I thought)
once you are exposed (sick or not) you will always have the antibodies (like
after a vaccination, or having the chicken pox).

Now what I wonder is how virulent I am toward other people.  I feel freaked
out every time I have sex, and I end up with my period (like when it's a
couple of days before, sometimes I'll start early if I have sex).  I just can't
seem to get these answers.  The closest information I've found is that the lower the
viral load, the safer it is, but I live in this constant fear of being
around other people who might use my fingernail clippers, or somehow come
into contact with my blood, or something my blood has touched.

Can anyone offer feedback on this question?  I'm not married.  I don't have multiple partners at once, but obviously I don't have one partner that I've been with for years, or that I plan on being with in the future.  I find it strange that they say there is less risk of infection between married couples than someone who has sex with someone just once.

thanks in advance for any feedback

[amommy]

Hi there :)  Congrats on being NEGATIVE!!!!
I am not one of the more "in the know" people here, but I do know that if you are negative, as you are, you WILL NOT transmit hep c to anyone.  You do not have it, therefore you cannot transmit it to anyone else!  If your viral load is negative, none of the little buggers are in your blood.  WOOHOOO!  That's a wonderful thing for you.  I hope that this info is reassuring to you.  
I will try to look for links to post for you that will substantiate this info for you.  In the meantime some of the others will have more to say I'm sure!  

I don't think you have posted here before, so I just wanted to clarify that this is a patient to patient forum, so no docs here!

[scruffy]

I agree totally with Kalio. You are cured. If you need to get another test to reassure yourself then get one. If you test clear then accept that you are cured. Congrats on treating and curing. Frank

[SnoWav]

My doctor told me that if you cleared the virus it would be very rare to spread thru sex. I agree with you that it could be spread with the dirct exchange of blood (transfusion or ivdu)

[scruffy]

Can we assume then that you will be taking precautions(condoms) during sex and panicking everytime someone uses a nail clippers of yours for the remainder of your life-clear or not of virus? Also, will you be warning everyone in close contact with you that you have hcv even though you tested clear at some point in time? In other words-if you have hcv you will always have hcv?

[scruffy]

Can we assume this will be a long thread? smile

[scruffy]

I'm mainly referring to the ethics of protecting others from your disease. From your position ,so far, it would appear that you believe a monogamous couple in which one person aquired hcv and the other was clear should use protection forever regardless of clearance or non clearance of virus. That the possibility of infecting another is always there and that your(our) responsibility is to live our lives as though we are always infectious regardless of treatment outcome.
I think we need to balance what is POSSIBLE with what is actually likely.

[DoubleDose]

If you take the time to read the Pham research study linked by spacecoast, you will find that the people studied were all either longterm SVR's, or those that had spontaneously cleared the virus without treatment in the past.  In otherwords, by current standards, they are 'without' the virus, as is the person who originated this thread.  What these researchers found is that in this group of SVR's and spontaneously cleared persons, that the virus indeed WAS present in various cell structures, including lymphocytes.  In other words, they are stating that our current terminology of SVR, or eradicated virus, no longer 'having the virus', etc. are potentially inaccurate and misleading.  The virus indeed ( according to this study) remains alive and well, although at low levels, in almost ALL of those who had achieved SVR.

The finding DOES indeed raise the possibility that SVR's and those spontaneously clear of the virus, may be able to transmit the virus, or infect others....though it is assumed that at such low levels, that it may be harder to transmit efficiently.
Blood to blood interactions may still carry some level of risk.

Other recent research studies have mirrored these findings, and the HCV medical community is not in consensus about what this all means yet.  Some camps believe the infection is still there, and viable, only now existing in a different mode....while others have disputed the viral findings of the researchers.  All that I can conclude is that the researchers seem to have very specific, and repeatable findings, backed with very sophisticated testing, to support their assertions.  We are all waiting to see how this plays out.

So, Kalio, I think it is presumptious to say that the virus CAN NOT ever be transmitted by someone who is 'cleared' of the virus by treatment, or SVR, because the current research is claiming that the virus is probably STILL THERE.  Even though the standard PCR's now state 'undetectable'.  This MAY NOT translate to 'virus free'!!!

There is growing concern about the long term implications of this 'viral persistence', if it is a valid finding.  Read the study, (and other similar studies on viral persistence after SVR), and draw your own conclusions.

DoubleDose

[beamishboy]

the issues you decided to dissagree about are serious matters & certainly deserve debate........i think  riba/post holiday stress plays some part in the 'spirited' response ......please don't  take this the wrong way:but you guys are cracking me up--the fast-n-loose biblical quotes; "full of something alright" retort...........it has truly given me food for thought and a couple of chuckles on an otherwise blackday....whether you meant to or not,thanks...................for getting me outa my own head

[DoubleDose]

You must be reading a different article.  The one I read, linked above, says the HCV RNA was carried long term in ALL 16 individuals in the convalescent phase sera, and/or PBMC.
Also, evidence of replicating HCV RNA was found in the majority of samples of mitogen-stimulated PBMC.  They summarize by stating that the virus may persist in both sera and lymphoid cells for years AFTER SVR.

Several of the recent research studies have also IN FACT posed the concern that HCV MAY potentially be capable of transmission by these supposedly 'clear' SVR's.  We just do not know enough about this issue to say for sure whether it can or cannot happen.  When you find leading doctors who guarantee that it CANNOT be transmitted by SVR's, let me know.  I have not seen anyone claiming this as fact.  In fact, many organizations, and physicians, are now calling SVR a 'lowering of the virus to undetectable levels', rather than eradication.

I AM NOT trying to claim that this phenomenon can or does cause easy or even rare transmission of the virus...ONLY...that there may be more than meets the eye...and that there may be replicating virus in various locations within many or even most SVR's...according to at lease three research studies in the past two years.  I am sure we will learn more.  In the interim, let's keep an open mind, and look for the facts...rather than hype the standard banner of:  It's gone permanently, eradicated forever....cured.   The doctors are themselves not at all sure on this question!  How can YOU be?

DoubleDose

[DoubleDose]

First, I did not claim you could transmit the virus sexually if you were SVR, you read that into my comments.

Second, I did not post the article under discussion, another forum member linked the article above.

Third, You can find evidence of almost every virus one has contracted on autopsy by finding ANTIBODIES to the viruses, not actual replicating copies of the viruses....other than maybe Herpes Viruses...and MAYBE HCV.  Most of the past viruses contracted are indeed long gone, and only show up as antibodies to the virus.   The article cited is not dealing with antibodies, but with actual replicating viral copies.

Fourth, I did not claim that the evidence of 'viral persistence' proved that one could transmit the virus in ANY manner, I merely indicated that it is yet  to be seen whether that can happen.  The MEDICAL community has said the very same thing.

Finally, I am not trying to scare, panic, or discourage anyone from treating and becoming SVR.  I treated twice, for extended periods, and at very high doses.  I would do it again had I not achieved SVR.  Still, I would like to know what the ramifications of 'viral persistence' might be.  You may not wish to find out more....and you might wish to just be done with the whole thing....but some of us would like answers to this question...and issues around continuing HCV type symptoms in many people long after SVR.  MAYBE, just Maybe it related to the viral persistence issue.  And maybe it does not.  Still, I will be following the research.

Certainly those who are SVR should be virtually incapable of transmitting the virus even if there is some sort of 'low level persistence' after SVR, but still the possibilities need to be explored.  As in the person who received the tissue graft from an HCV negative donor recently, and promptly contracted HCV....and isolated examples of similar incidents from blood donors...etc.  These rare occurances need to be understood fully.

I have no fear of transmitting anything to anyone since obtaining my SVR...but would I want to donate a bone or organ tissue graft to a friend or loved one.......I don't think so.  But that's just me.  You can disagree.  I just would not want someone to find out the hard way that the viral persistence issue MIGHT be a problem, under certain circumstances.

If my comments, or the recent research studies frighten, or discourage anyone then I think they should stop reading research articles, and avoid forum discussions that explore the unknowns relating to this virus.  I truly do not think that I was being alarmist at all.  Just re-read my previous posts above.

DoubleDose

[beamishboy]

Well put! i am reading your posts with great relish..Both of you are well-spoken and versed..This question frightens us all,alittle,i think..but that isn't any reason to stop examining theory,research&studys. not that i think anyone suggested that..but 1 study does not make it a fact..and let's All hope that it isn't true

[DoubleDose]

I do think you are going a bit overboard in response to what I said.  Call the people who did the study and tell them how you feel.  I was merely restating what has been determined in recent studies.  No wild crazy speculation, or predictions of doom and gloom, etc.  Merely posing the same questions that many researchers are now also posing.  No big deal.  Let's just try to deal objectively with the information as it comes in.  I am sure we will learn lots more about HCV before too long.  I choose not to be reactionary, nor to 'stick my head in the sand'.  I just want to get the real answers.  I can handle it....I hope.

DD

[johnisme]

Hey guy, you get some flak at times with your posts, and i don't agree with some of them but i really like the way you handle yourself here, unless i've missed it you never seem to lose your cool when people disagree with you. One thing i don't think you suffer from is riba rage. Keep up the good work as i do enjoy reading your posts.

Stay well........John

[SnoWav]

Im with you,when I clear this virus Im going to put it to rest and forget about it the best I can.I have had this for 35 yrs or so and diden't think about it until the last 6 yr because I diden't know about it and that was just fine with me.Not going to walk around like im a lepper I mean hepper.headed back soon from the land of the un dead cheers from the end of the line 47/48

[beamishboy]

Bravo!

[debdeb47]

The recent studies re: viral persistence are sobering.  It seems very clear to me that in light of the apparent persistence of negative strain RNA, etc. in the blood, which is somehow particularly associated with replicat-ability, we are very likely retain at least a  ghost of a virus with the potential to wake up as an evil zombie under circumstances still undiscovered, but I bet high alcohol use after SVR is contraindicated.  

As to the transmissiblity of the virus by blood or, GF, some new means, it seems highly unlikely as the bits-o'virus would not insinuate themselves into the new host in the same way as the real virus.  But, I have never personally thought it was a real "cure".  It seemed more like a new lease on life and health, but still being susceptible to reactivation and occult liver vulnerability to who-knows-what.  It may be just until a new thing comes along that knocks out the zombie back to hell.

I'll take it.

[andyarundel]

A few words here if I may. First off studies are impossible to determine as to the extent of the sexual vector of HCV, as they are based on the anecdotal thoughts of those who participate. The only validated method of determining HCV infections by vein to vein transference via a transfusion. As the virus takes from six weeks to six months to show antibodies to HCV present in the blood. To state a risk factor of 3% or 6% and regard that as low should take a deep breath and rethink that dynamic. In a court of law, a risk factor such as those I cited would be considered quite high. To date the has been no studies undertaken to measure incidence of sexual transmission  of HCV from those who have obtained a sustained viral response, anyone who uses the word cure to substantiate their claims is being rather foolish, as to date the studies do not lend strong weight to the cure word being applicable to combo interferon treatments. A good exercise may to consider the actual evidence and then think, do I have the right to infect someone using my thoughts I posted on a HCV list serve? How would I feel if one I had been intimate with later tested positive for HCV?

Please keep in mind always that this is still considered an emerging disease, and with that there is little data if any to support many of the claims made in this thread with regard to those who have achieved a SVR and sexual transmission. What a few unnamed Docs suggest and reality are often based on the patient’s lifestyle etc. It would be of course very irresponsible for a doc to suggest that all who have obtained a SVR can in no way transfer the virus to another via sexual activity.

[andyarundel]

Occult virus means the virus is active at undetectable levels by current testing methods. Current thought suggest that the virus betrays itself by the presence of antibodies or viral genetic material (RNA) in the blood serum or plasma (the clear, fluid portion of whole blood). But some people who have no detectable HCV antibodies and no evidence of HCV in their serum nevertheless harbor hidden virus elsewhere in their bodies.

Wher the dead virus thought came from puzzles me.

[andyarundel]

There is no precise definition of what separates the living from the non-living. One definition might be the point at which an entity becomes self-aware. In this sense, someone who has had severe head trauma may be classified as brain dead. In this case, the body and brain are still functioning on a base level and there is definitely metabolic activity in all of the cells that make up the larger organism, but it is presumed that there is no self-awareness so the person is classified as brain dead. On the other end of the spectrum, a different criterion for defining life would be the ability to move a genetic blueprint into future generations, thereby regenerating your likeness. In the second, more simplistic definition, viruses are definitely alive. They are undeniably the most efficient entities on this planet at propagating their genetic information.

Although there is no definitive resolution to the question of whether viruses can be considered living entities, their ability to pass on genetic information to future generations makes them major players in an evolutionary sense.

[beamishboy]

well i for one feel positively braindead after devouring the mornings morsel on SVR & transmission via sex;occult virus;what constitutes living --so if virus is present(at all) it's living--if it's living it can come back?------sh#t i don't wanna hear,but gotta know!...............oh,and spacecoast:stop taunting kalio,it really is undignified&adds nothing to this discussion but emotion--all h*ll if it makes ya feel bettr,what business is it of mine..The lady can most certainly defend herself & with ready wit!--thanks all

[andyarundel]

A few thoughts ….number one, there are no legions of Docs who claim this. Their may be a few who may claim this to their patients, but find me one who sings their name to this claim, and I will find you a hundred who will claim they are a blowhard egotistical fool. That is reality. As for your comment, “Not one medical authority suggests that once you are SVR you can then pass on this virus sexually”, I just asked one of the best in the world and she laughed and said, “Not one medical authority suggests that once you are SVR you can’t then pass on this virus sexually”.  How would you document such a case. Is impossible at this time to even prove transference via sexual means as it stands now. The only proven transference to date is by blood transfusions. As I mentioned, they only real valid method to undertake such a study would be very unethical to say the least. The only validated method to date is vein to vein tracking, anything else is pure speculation.

Truth seems scare you for some reason. With the millions of people out there with the disease, with no known risk factors, I would suggest you take a look in the mirror before dumping lines like the following out there, as much of your comments on many things fit the bill.  “what is dangerous about the internet, people using small unverified studies as scientific fact and making wild frightening claims”.