Link/ Extrahepatic Transmission/ Neg. on Testing

[DoubleDose]

In reference to the recent issues that I raised regarding possible intra-familial transmission on HCV, and also the potential for remaining reservoirs of the virus after apparent SVR from blood and liver....check out the link below!  Disturbing to say the least.  Food for thought...and future research.  What do any of our members make of this report?????

http://www.janis7hepc.com/february.htm#OC

Doubledose

[TnHepGuy_]

Thanks for posting the link.

The most disturbing part of this report to me is the fact that this study may show that a much lager portion of the population may have Hep C, yet show no sign of it via PCR testing. The subjects used in the study presented themselves with elevated liver enzymes and no serum sign of Hep C, yet a large percentage (84%) had actual active viral replication (as evidenced by the negative-strand RNA). I think this points further to the case that a liver PCR is the best test to determine if any active RNA replication is occuring. These non-serum detectable patients could very well end up presenting a whole new challenge in the diagnosis and treatment of Hep C and liver disease.

It would be hard to directly correlate this study group to patients who have achieved SVR, though. Or even those who have spontaniously cleared the virus. Again, the best measure would be to sample the liver of those who have cleared the virus and look for negative-strand RNA (though having patients agree to a post-tx biopsy and having insurers cover it seems rather unlikely). The finding of other 'remants' of the virus is to be expected - as our bodies retain viral 'pieces' from all those that we have been exposed to (and cleared) over time. Whether or not these 'crumbs' can cause any health issues is a mystery. But one thing that is not happening is the mass relapsing of the patients who have cleared the virus - either via SVR or spontaneously.

During tx, serum clearance of the virus is only one step in the overall process - as is evidenced by the length of continued tx-time after achieving undetectable status (e.g. - 36 more weeks of tx for geno 1's beyond the week 12 clearance point). Real SVR takes place in the liver. And short of a liver biopsy PCR, we can only somewhat blindly look first for blood clearance, then add a bunch more weeks of tx on top of it and hope for the best. Sadly, things remain rather Mideval - at best - in so many things Hep C-related.


TnHepGuy

[TnHepGuy_]

<a href="http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-59.html#1">Possible Role for Vitamin K2 in the Prevention of Hepatocellular Carcinoma in Women with Viral Cirrhosis</a>

<a href="http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-59.html#2">Hepatitis C and Early Acute Rejection Following Liver Transplantation</a>

<a href="http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-59.html#3">National Institutes of Health Researchers Identify Better Hepatitis C Treatment for People with HIV</a>

<a href="http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-59.html#4">Idun Pharmaceuticals Initiates Phase 2 Clinical Study of IDN-6556 in Hepatitis C Virus</a>

<a href="http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-59.html#5">Viragen Granted U.S. Patent for Manufacture of Multiferon(TM)</a>

<a href="http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-59.html#6">NEW - Hepatitis C Disinfectant Just Introduced in the Salon Industry, Could Mean the End of O'L BLUE!</a>


http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-59.html#1

http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-59.html#2

http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-59.html#3

http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-59.html#4

http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-59.html#5

http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-59.html#6

[cuteus]

the way I read it, the occult hcv was present in the study group in their liver and peripheral blood cells. Although they did not disclose in that article what risk group this was, the conclusion stated something to the effect that it was, IDU, transplants, blood product transmission risk group, so we can't stretch it to include daily casual contact with an hcv infected person, even if it is long term contact.
what concerns me is those with normal enzymes that might harbor hcv and  might have extrahepatic manifestations.
I did not see a mention of bx to other tissues but the liver, I guess because of the hcv preference for those cells, it is the most likely area to be detected. unless my daughter used the same blades, clippers, etc as me, i would not worry about occult hcv, if she did share these items, I would pursue it.

[Fubarcat]

I also have a question.  If during treatment you are PCR "undetectable" say at 12 weeks and again at 24 weeks, does that mean you cannot infect somebody else?  For instance, say you get your PCRs back as undetectable to less than 10, is it still possible that you could infect your spouse thru sex? through some other accidental blood exchange? thru using the same toothbrush, razor blade?  It was just a thought that ran through my head that if I am undectable to less than 10, then how can I accidently infect someone else with a blood exchange, if that were to occur?

[cuteus]

I would not worry about transmission thru sex if the vl is undetectable in the serum, it is so low to begin with when vl is present.
As for blood donation and transplants to the non- infected, I guess that is why the blood banks don't take our blood for the pool, they do not want to take a chance even if no serum vl. Clippers and razors, i don't know, I would not take that chance if no permanent svr yet, after that, it is matter of how fearful and paranoid we are, but I probably wouldn't share them.

[TnHepGuy_]

One possibitlity of having continued extreme low-level viral replication in the livers of non tx'ed patients occur is that an individual's immune system may be able to 'hold the virus in check', but not be able to reach the level of complete spontaneous clearance. How rare or prevalent this may be (if at all) is unknown. Might these type patients be able to clear the virus via tx much easier than 'standard' serum-level detectable patients? Makes a plausable theory.

But as far as relapse goes, I believe time and the numbers speak for themselves - less than a 2% relapse rate beyond 6 month post-tx SVR. And we now have over 15 years worth of tx-ed patients who have cleared via interferon - and who still maintain their SVR status.

What is needed is a bx/PCR study done on a large group of post-tx, SVR individuals (who no longer are in an HCV risk category) to determine what may or may not be taking place in their livers (in terms of replication), via negative-stand RNA.


TnHepGuy

[Amerabrit]

TnHepGuy: I am so happy you posted before me because my responses were the same as yours, word for word:).
Rev:  I would like to know if the virus hides out in body fat, do you know of any studies to that effect?  has anyone here ever had a body fat biopsy?  Is there any such thing?

[snook_man]

I have a question about VL..I know that they started saying that high VL was bad, now they say that it really doesn't matter, but what is the truth?? Say for instance, My VL was only 5460 in April, and I have had this disease for 27 years.. Factor in the rate at which Dr's say the virus replicates, why is my VL so low?? If it does replicate so quickly, why does peoples VL go down..My mothers, started at 4.5 million, then 2 million, now it is like 600 thousand.. If it indeed is able to replicate so quickly, what is keeping mine at bay, and decreasing the detectable VL?? Supplementation must be working??
I have seen stated on other sites, that the HCV is found in many, if not most of our organs, but the liver is the only one it directly effects..

[Amerabrit]

I understand your question and concerns but I honestly can't think of one occassion when I may have exchanged blood with anyone, except the blood sister thing I did when I was about 8.  So, even though I believe the risks to be low, I wouldn't take any chances..
I've been meaning to ask you, how does tx affect your ability to home school your children?  I am so impressed you can do that at all let alone while on tx?
Hope you're doing well.

[Amerabrit]

Your antibodies?  Could it be your body's ability to fight off the virus is better than those with higher viral loads?

[Fubarcat]

Thanks for responses on chances of infection when loads are "undetectable".

Ameribrit:  Sorry - you must have me mixed up with someone else.  My son goes to a private school for learning disabled kids.  I work full time.  No way could I home school him even if I had the time.  I simply don't have the ability to understand why he can't read even though he has a high IQ.  Just one of those things in life that escapes me.  Thanks for asking about him though.

[Amerabrit]

I'm sorry for the mix up..  I don't have children but I do understand how demanding they can be and can only imagine the added stressors parents must endure while on tx.  I hope your son's school is good for him and that he's doing well.
Take care.

[woodbeegood]

i'm wondering the same thing-i'm back to weekly labs-everything looks stable hgb hovering @10.5-platelets hovering mid 60's to 70's-the only thing i could come up with is maybe after being low for so long they start to look at other things too-while i'm at it i also have a question about this whole extending tx thing-@ 12wks vl was undetectable but rna still showed detected @ 23wks vl still undetectable & rna undectable which tells me sometime between 12 & 23 i really cleared-so i'm guessing 48wks will not be long enough to sustain svr - is my thinking correct on this? thanks yall

[cuteus]

how low did your test go? did it go at least <50 IU/ml? if it did not, I would agree that you did not clear completely at 12 wks, what was the log drop? even though mine was close to the two log drop, I consider myself a slow responder and I am extending to at least 36 wks beyond the negative date, maybe more. There are a few studies supporting extension for slow responders. We have seen EVRs here who relapsed, I do not want to take the chance when I am not even a RVR.

[Honey15637]

What does your labs show and how much of a drop from last month? From what I understand,,,1st 6 months if you are going to need anything for drops in blood,,is then,,, and then 2nd 6 months should stabilize.  However I have seen where a few have talked about even as late as week 40 thru 45 having some problems so guess it can happen.

[woodbeegood]

i got the 2log drop-started @ just under 2mil-test measured <615-i really just want to have to do this whole tx thing once if i can get away with it-it's not a picnic but so far it's been doable & i would rather stay on for an extra 8-12 wks then have to start all over

[DoubleDose]

I agree with you.  It is disturbing to think that many in the general population may have HEP C yet apparently not have it in the bloodstream (On PCR testing) and more disturbing, do not show antibodies to HCV on blood testing.  My concern:  Does this point to non-blood related transmission routes???  Could there be another entirely different 'variety' of Hep-C infection which travels through either lymphatic tissues, salivary system, nerve tissues, sexual/gastric fluids......which does not easily find it's way into the blood???  Hence the lack of evidence on PCR testing, and antibody testing.  Maybe we have been only working with those who have contracted it 'intra-venously' in some way!
Millions could have related symptoms, and have been told that they are HCV NEGATIVE!

And they only looked at people with SIGNS of infection related to liver disease (elevated liver enzymes)!!!
What about all the people with RA, Sjogrens, Chronic Fatigue Syndrome, Diabetes, Non-Hodgekins...etc, etc????
I wonder how many of them might harbor HCV in areas other than bloodstream?????  This may not be a 'blood-transmitted-only' virus after all!  That would be disasterous in terms of the percentage of population potentially exposed over the past decades!  

This is a study that needs to be replicated in the United States, on a vastly expanded basis, and covering a wider variety of symptomatic patients...Ideally, those with manifestations that are typical of HCV extra-hepatic symptoms.  I continue to be concerned that there is a bigger threat lurking behind the scenes than most in the medical community currently believe.  That is also being borne out in an indirect way by all the recent evidence showing HCV to be a causitive agent, or prime factor in so many other diseases... eg.  RA, sicca syndrome, lymphatic diseases, diabetes, EMC, non-specific arthritis, and so on....  If the above study is for real, and can be replicated...then we are in for a huge 'sea-change' in thinking regarding this virus...and the level of threat that it presents!!!!

Please let's have other opinions.  Let's ask our docs about the above.  This needs some explanation (explanation that I think they may not be able to provide).

[cuteus]

This article does not indicate the risk group used, it does not clearly indicate the length of infection in this group. Was it decades of infection or a few years, months?
the following statement does not extend the risk to non blood transmission:"Studies have shown that people with HIV (especially those with CD4 cell counts below 200) and transplant recipients taking immune-suppressing drugs often have HCV infection but no HCV antibodies. Marcel Beld and colleagues of the University of Amsterdam reported in the August 15, 1999 issue of Blood that injection drug users (IDUs) sometimes had a prolonged period of being HCV antibody negative after infection (as long as eight years), and that some also had intermittently undetectable serum HCV RNA."
We really can't stretch their findings to include casual contact with saliva, tears, etc. The group studied was IDU, the intermittent negative could be that it is harboring, they just got infected and their body is fighting it at the liver level through some other mechanism than antibodies, the body cleared it and they got reinfected by the continued IV use, I don't know, I would like to see the study on a non IDU group before I worry.

[Honey15637]

Whew,,,that is quite a drop in one month.  No,,,shouldn't have anything to do with weight loss or at least I wouldn't think but,,,,If I remember you have lost a lot right?  Are you eating good and have an appetite?  Of course with the WBC drop,,,you shouldn't feel a whole lot different but just makes it harder to fight off infections...Is the rest of your lab work ok or within reason?  I don't know,,,it does seem odd that big drop now but you might be surprised also next time for labs because it might go back up. Mine has been staying pretty steady at about 2.5 since 2nd month of starting tx...

[bajajkawa]

Any new studies on transmission after SVR?