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]

That's all very nice and dandy, but we have more important issues to consider regarding the "MouseScan" device and the relative sensitivity of "TDA" (tabletop dropping assay) in the thread above, entitled "Another Type of SVR"
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Just kidding of course, and really appreciate your responses :) Have a few questions regarding your last post relating to the "treat or not to treat" decision making process, but I can see you are backlogged at the moment. Meanwhile, if you want to take a comic break, there is a reference to you in the thread just mentioned.

Hope you had a relaxing weekend.

-- Jim

[jmjm530]

HR: Also, what is your intracellular Glutathione and Antiox status? -------------------------------------------------------------------
I'm single, is that the right answer :)
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Seriously, are you suggesting these tests prior to TCM to help determine whether or not I should take herbs, or are you suggesting these tests prior to TCM to get baseline levels before herbal treatment which I would then monitor during tx?

In either case, which tests specifically, what frequency, and what should I be looking for?

Presently, all I was planning on doing was a pre-tx basic metabolic panel, including LFTs, CBCs and probably thyroid functions. Then I planned on doing a basic metabolic panel and LFTs on a weekkly basis for a month, and then monthly after that.

If you prefer, I can email you on this. I believe you left your email with a couple of our members and I could get it from them.
Thanks.

-- Jim

[DoubleDose]

I already do a little bit of alternative medecine with a variety of vitamin, mineral, herbal, and amino acid supplements, etc.  I am on both sides of the fence on both this and TCM, in that one side of me says 'why do I waste all this money on handfuls of little pills that probably do nothing but make the supplement industry richer', while the other side of me says" this stuff can really fine-tune the body and get the immune and nervous system operating properly, while replenishing depleted substances.  I am both skeptic AND believer, if that makes any sense at all.  I really hate looking at both sides of the coin, especially when it concerns my own life...but I guess it could be worse....

I think the Chinese traditions are very interesting, and filled with wisdom and artistry, but on the other hand, probably not what anyone would call scientific, or 'proven'...so again I wrestle with my Yin and Yang, and I think they are probably locked into a best of ten-thousand tournament....since I could embrace either position.  I really DO believe that wholesale lifestyle changes, and stress management, proper diet and exercise, coupled with TCM, yoga, medical treatments, etc. could all go a long way to restore good health.  I am still trying to finally give up some bad eating habits, and to return to an exercise focused lifestyle......my post-tx SVR success has been accompanied with some decadence in dining, and a feeling of 'I am going to enjoy things for awhile!'.  Unfortunately, that attitude thwarts feeling better, and leads to more decadence.  I am looking to set a start date and get back to many of my old health regimes.

I do believe the post-tx after effects, whatever they are due to, seem to promote a feeling of inertia, consumption, and passive enjoyment...far more than I ever experienced before tx!  Also, I continue to have very volatile cycles of nasty symptoms that feel more and more 'autoimmune, and neurological' in nature.  Someone mentioned developing Parkinson's after tx, and sometimes I feel like I am developing something like that, or MS, or Lupus.  Some weeks are just great, and others, I feel like the wires are crossed, my nervous system in in rebellion, my joints are all screeching (as in RA), and my mind gets very 'fogged'.

Its kind of an adventure at this point to see where all of this leads.  Will it get better over the years...worse...or just continue to be an 'up and down' pain in the neck????
I need to get more serious about managing my health aggressively, and trying to actively overcome the after-effects.

I hope you are feeling better each month.  I know that you also had developed several sx after tx, and had been concerned about when it might all resolve.  Hopefully you will get there soon.  From all the feedback we have gotten from HR, I continue to think we may have developed a sort of minor autoimmune state after SVR, which may just be a permanent part of the 'truce' landscape relating to the 'residual' stuff.  Maybe optimum conditioning and lifestyle will keep the ill effects to a minimum.  We will find out.

Enjoy the new week, and stay well.

DoubleDose

[Hepatitis Researcher]

Before you go into TCM you might want to start assesing your immune system/inflammation status with at least some meaningful parameters, like TNFalpha levels as mentioned above. Also, what is your intracellular Glutathione and Antiox status? Did you know that this can be measured with a scientifically sound method ex vivo?
(In my lab of course, for $500). Just kidding). No, really  there is such a method by another lab that I have carefully evaluated.

[Hepatitis Researcher]

Sorry if it does take some time to respond to the important questions that you and others have. Many of them are questions of huge importance and vast complexity. Answering them in a fleeting and superficial fashion - to get done with them- would be very inappropriate. Some questions in order to answer to the state of the art - that is in full considerations of the literature and the hotly debated concepts - would require a 30 page review paper. Sometimes a new paper  ( like willigs question) needs to be scrutinized in fine detail to allow a proper extension of the previous knowledge base. New real answers and insights emerge all the times but interpretatons and projective thinking from these need to display several points of view possible. i dislike it when reporters often say ( even in Natures news and views colum " Dr. XX thinks, believes, strongly feels, is convinced, pushes for" etc. While it happens that we sometimes " strongly believe" before we " know" when it comes to the most difficult - and also often practically most important - questions we hold several lines of thought in our own mind in dynamic balance. As JmJm530 said once above "I often disagree with myself".

Thus it is necessary to slowly work on one question after the other, realistic time allotments permitting.  Often threads are closed when one has a chance to come back with the answer or the contextual spirit has dried up already.

DDs question/comment below is one of those: IS THAT IMPORTANT - VERY MUCH SO. DOES IT HAVE AN EASY ANSWER AFTER BASICALLY AGRREING WITH THE PICTURE HE DESCRIBES? no.
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? YES A LOW LEVEL IMMUNE ACTIVATION THAT EBBS AND FLOWS IS VERY LIKELY - SEE PREVIOUS THREADS ABOUT HOW PEOPLE FEEL AFTER SVR. THIS MIGHT EVEN BE A NECESSARY COMPONENT OF SVR TO GENERATE THE LOCALIZED ANTIVIRAL ENVIRONMENT WHERE THESE TINY  RESERVOIRS ARE. AND THESE CYTOKINES - IMMUNE SIGNALS DO ACTIVATE INFLAMMATION IN OTHER ORGAN SYSTEMS. DO WE HAVE A SYSTEMATIC LIST OF TNFalpha serum values for all our SVRs??
AND ALSO HOW "TINY" THE LEFTOVER VIRAL ANTIGEN AMOUNT IS WILL BE DRAMATICALLY DIFFERENT FOR EACH SVR!! AND ALSO HOW EFFECTIVE HIS LOCAL IMMUNE CONTROL WILL BE. AND ALSO HOW "READY" OTHER PARTS OF HIS BODY ARE FOR "RHEUMATOLOGICAL", SYNDROMES, FATIQUE, ACHES AND PAINS ETC. Thus in the end we have the full spectrum from "happy no more problems" SVRs to many complaining that, aside from the better outlook for their liver, they feel as bad or worse as before TX and SVR.

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? IN PRINCIPLE, IF THE "INVISIBLE INFECTION" TAKES PLACE IN A HIGHER PERCENTAGE THAN WE MIGHT WANT TO THINK, THEY WILL ALSO HAVE A SPECTRUM OF "CHRONIC IMME ACTIVATION DISEASE". LESS HOWEVER,THAN A SVR OR PRE TX HCV SINCE THE AMOUNT OF VIRUS LIKELY WILL BE EVEN TINIER AND IMMUNE CONTROL IS EXTREMELY EFFECTIVE AND MOSTLY CLASS II CONTROL IS ENVISIONED. AND WE MUST NOT FORGET THAT SOME "VIRAL INFESTATION" OCCURES WITH ALMOST EVERYBODE - EG EBV, CMV, PARVO, JUST LOOK AT ALL THE POS ANTIBODY TESTS. WHICH OF THESE IS MORE "IRRITATING' AND  TO WHAT EXTENT INDIVIDUALS -EVEN IF "INFECTED" WITH EQUAL REMNANT AMOUNTS OF VIRUS -RESPOND WITH SYSTEMIC CYTOKINE AND REMOTE INFLAMMATION SYNDROMES WILL TAKE DECADES TO ELUCIDATE.  

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.
THIS IS AN INTERESTING RESEARCH QUESTION but unlikely to be invesigated in larger trials any time soon. Look at all these Vincente Carreno papers from the study of viral hepatitis group, they are struggling to deal with these type of questions and came up with important insights already. But there is only small money behind these and research, particular with sophisticated assays and samples and larger numbers of probands are very expensive and will get more expensive, since we will have to use even more complex tools of analysis to obtain real answers.
MEANWHILE THE QUESTION CAN BE PONDERED : What can we do about? Supress the immune system? Use "nonproblematic" antiinflammatory measures? ( Like being slim and exercise and eat fish and EPA and DHA, control carbo input and leave our NFkappa B receptors carefully undisturbed? Who will pay for these studies?

[jmjm530]

Lastly, I just want to re-emphasize that I'm 100% with you in using everything and anything to help our outcomes. If it turns out that multi-compartment testing can either benefit current treatment outcomes or lead to newer, perhaps more "complete" treatments, then I'm all for it. I also share what appears to be yor frustration that clinical practices seem to lag so far behind the research. This appears often to be the case in so many medical disciplines and one reason why HR presence is so refreshing as he seems to combine some of both.

Be well.

-- Jim