Conversation with HepatitisResearcher

[DoubleDose]

I thought that a thread devoted to remaining comments from HR and any relevant questions from the forum might be useful.

To HR:
My question is this:  If there is residual virus left after successful treatment (and SVR) as is generally becoming an accepted fact (such as lymphatic system virus), then might the SVR's and the spontaneous clearers be dealing with an ongoing 'autoimmune' issue, in that their systems are perpetually dealing with viral suppression, and possibly generating a constant, or near constant state of immune system stimulation?

Might this be a major cause of the ongoing symptoms that many SVR's continue to experience long after tx?

AND...if THIS might be the case....what about the family members and intimate contacts that may also be 'receiving' the virus in tissue or fluid transmissions (non-blood), possibly setting up the same pattern of constant viral suppression and immune system stimulation , without a generalized or typical HCV blood infection?  In other words, might there be a similar 'persistent HCV infection' taking place in close contacts of HCV infected, but without provoking a full blown infection, and without any antibodies evident in the blood?

Here again we might see symptoms of 'autoimmune disorder', or CFS-like problems, but would have no confirmation of cause, since the blood would yield no HCV+ antibodies, nor would there be a positive PCR on blood testing?  It might be a good idea to look closely at large populations of HCV+ intimate contacts to assess their health and symptoms.

Thanks for your input!!!

DoubleDos

[jmjm530]

Just one last comment Ina, akin to one of Kalio's remarks in another thread. A war takes TWO people. I never was at war with you so please stop repeating that. You were at war with me for whatever reason. I'm a big believer in John Lennon's words. War is a waste of time and energy and will not help the immune system one iota. If you want to continue this please do it way down below so you won't clog up a thread you accused me of doing. I probably won't look down there for few days but will eventually.

[jmjm530]

Just to help things along --  I believe the question Ina wanted answered is in post "C30" (above) as transposed by "MissMiss". If I'm wrong, no doubt I'll be corrected :)

-- Jim

[cuteus]

so now there are 10 slots left in this thread for HR to come back and pick up where he left off. Or maybe by the time he can come back, the whole thread will be full and he will have to direct himself to yet another new one, which he already mentioned is not easy to do.  It seems that people are trying to answer the questions that were directed to HR and that might be what is taking most of the slots? People trying to clarify other people's posts or answering them instead of letting HR come back and addressing them himself?  it just seems that way...don't ask me what the solution is, I only work here!

[jmjm530]

Here are all the threads I could find related to HR. Hopefully, this will be helful both to HR and the rest of us following the discussion.

Perhaps whoever opens the next thread might label it "Conversations with HR #2" or something like that, so they will be easier to navigate both for HR and the rest of us.

I believe this list is more or less complete and in chronological order, but if someone has the time and inclination they can check and work on it.  One suggestion is to repeat the updated list of HR threads at the beginning of a each new thread, that way people can back-read if so inclined.

HR, I think you should take all this the minor friction and confusion as a very big compliment. Obviously you have something to say that people want to hear. Thank you again for your valuable time and efforts, and if you have your own ideas on how this will best work -- not just for us but for you -- please let us know.  

PS Please try and answer Ina's questions before she tries to clobber me again :)

Here are the threads mentioned:

http://www.medhelp.org/forums/Hepatitis/messages/43686.html
http://www.medhelp.org/forums/Hepatitis/messages/43684.html
http://www.medhelp.org/forums/Hepatitis/messages/43669.html
http://www.medhelp.org/forums/Hepatitis/messages/43657.html
http://www.medhelp.org/forums/Hepatitis/messages/43631.html

###

[jmjm530]

Since when hasn't a thread been open to other people's comments, clarifications? Or when sub discussions between people (on topic) take place, for example between Willing, DD, and myself?
I've had threads directed toward me -- as you've had to you -- but everyone with information always chipped in.

One positive (yes, I know there are negatives) about the new format is that we have unlimited threads so it's not like when this one fills up we can't continue on with another.

Doubledose, myself and some others have tried to help the process by opening a new thread for HR's questions when we saw one being filled, as this one is now.

I'd be happy to open a new one now and number it sequentially which seems to make sense to me, but no doubt will get accused of trying to monopolize or "run" this thing :)

So maybe you'd like to help out in that fashion, or maybe someone else. As I mentioned in my post to Ina, I understand that HR is "backlogged" so I've pretty much stopped asking questions until he catches up. I think both of us agree HR is a tremendous resource here -- both for the information he directly imparts -- as well as for stimulation of discussion between members.

I'm just trying to help things along as I know you are.

Be well and enjoy the week.

-- Jim

[Hepatitis Researcher]

you wrote:
"Some of us here, including myself, have taken a sledge hammer approach to killing our HCV.
Doubledose did double Peg for 72 weeks, Sandi tx with standard drugs for 2 1/2 years, and I treated non stop for 111 weeks with standard Peg and 800mg Riba (type 2a).

1)
My question is this...since I tx so long, any of the cells in which HCV can be found, liver or otherwise, must have turned over at least once, and have taken any remaining virus with it.
What I am saying, do those of us that have tx so aggressively have a better chance of having gotten rid of residual virus.
THERE IS LITTLE DOUBT THAT, IN A STATISTICAL SENSE, YOU HAVE BETTER CHANCES FOR SVR WITH LONGER TREATMENT. THERE IS THIS ENORMOUS LOGICAL DESIRE TO PREDICT AND OPTIMIZE CHANCES FOR SVR AND NOW EVEN FOR SVR WITH LESS RESIDUAL VIRUS.Or maybe more permanent supressive Immune memory power to keep remnants supressed. Naturally the "post sledgehammer SVR patient" wants to know if it was worth the pain.
As already discussed several times, the residual HCV viral sequences in liver and lymphoid tissue look like a reality that is hard to deny. Again, the actual amount and the "quality" or potential capacity of such residual virus is likely to vary over a huge quant range from SVR to SVR. I said quality also, because even if we had a commercial test at this time to quantify - as willig suggested - those residual amounts ( I called a Swiss Hepatitisresearcher this morning who personally knows Franco Negro very well to call him and ask about the Pugnale paper.)-it would not be clear if higher amounts in the lymphocytes reflect a lessser potential stability of SVR> It might be just more " trash virus residuals" or this might be the reason the immune system keeps on higher alert against the residuals - because they are there. We see this in HBV treatment all the time ; If you super supress the virus with non IFN antivirals, and then let go of them, the immune system "forgot" whatever supressive power it previously had, the virus comes up strong and then, then the response reinvades the liver with a big, dangerous flare. AT THIS TIME, IF SOMEONE IS SVR, THEY SHOULD ENJOY THE FACT THAT LOSS OF SVR IS QUITE RARE AS WE KNOW THROUGH FOLLOW UP (see JmJms remarks.
But if immune supressive therapy is needed, a prophylactic antiviral treatment, just like in HBV under chemo or antirheumatic therapy will become stamdard of care in the future once such antivirals will become available. Meanwhile the "feel" seems to be that the resurgence tendency of HCV under these circumstances is LESS IN HCV THAN IN HBV.

2)
Since most of us SVR's don't have post tx biopsies which could detect occult virus, our only option is to watch for mild elevations of ALT's or GGT's which is not very reliable.
However, since I had also Type II Cryo, which cleared with HCV, can I assume, that should Cryo ever become detectible again, while remaining PCR neg, that I still have some low levels of virus somewhere?
I WILL TRY TO COMMENT ON THAT TOGETHER WITH THE FUTURE COMMENT ON THE CRYO ISSUE.
Do you think that crippled leftover viruses can stimulate the B-cells enough to start this auto-immune response again.
Willing here linked a paper that lets me to believe my thoughts are on the right track.

I am concered about about reidual (occult) virus and the damage it might do to our livers over a 20 year period. IF THE ALTS ARE IN THE TRUE NORMAL RANGE AND NO FIBROSIS PROGRESSION OCCURS IT IS LIKLEY THAT THE LIVER IF OTHERWISE WELL CARED FOR - WILL DO JUST FINE. THE ISSUE OF INCREASED HCC RISK IS A SLIGHTLY DIFFERENT ONE, DEPENDS OBVIOUSLY IF CIRRHOSIS WAS PRESENT BUT IT IS ALSO REASSURING THAT INTERFEERON TREATMENT HAS BEEN CLEALY SHOWN TO REDUCE THIS RISK EVEN IF NO SVR WAS ACHIEVED.

Most of us here are at the age were other disease (cancer) occur more frequenly.
It would be comforting to know that we can endure possible chemotherapy without having to worry about our compromised livers. I ASSUME YOU ARE NOT TALKING ABOUT THE RISK TO REACTIVATE HCV BUT ABOUT THE INCREASED GENERAL VULNERABILITY OF A PRESTRESSED LIVER WITH LESSER RESERVE TO TOLERATE THE INHERENT LIVER TOXICITY OF THESE CHEMOTHERAPY TREATMENTS? The liver has great potential to regenerate if under nonstressed, noninflammatory conditions. Functional liver mass will increase and the lobulus architecture improve  and the functional impairment through fibrosis diminish in parallel. REally "taking care of the liver" is of cause a must. What that entails might be a good topic for a future discussion. Some concepts are easy and well accepted, others are controversial. Some "liver support formulas" even support this site. How does one go about having reasonable opinions about them?? Very very difficult.