Aa
News items, other thoughts, thanks, open thread
Here are a few things that caught my eye recently:
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16251813&query_hl=9">Hepatitis C virus populations in the plasma, peripheral blood mononuclear cells and cerebrospinal fluid of HIV/hepatitis C virus-co-infected patients</a>
This study suggests some troubling items: HCV RNA independently replicating in cerebrospinal fluid. And differing genotypes of HCV RNA in different 'compartments' of the body, suggesting each compartment may possess the ability to be an indepenent replicatory breeding arena.
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16144125&query_hl=7">Occult viral hepatitis and noncirrhotic hepatocellular carcinoma</a>
This story points out the need for any SVR to keep an eye on the state of the health of their liver over time - based upon the experiences of occult HBV.
(post continued below)
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16251813&query_hl=9">Hepatitis C virus populations in the plasma, peripheral blood mononuclear cells and cerebrospinal fluid of HIV/hepatitis C virus-co-infected patients</a>
This study suggests some troubling items: HCV RNA independently replicating in cerebrospinal fluid. And differing genotypes of HCV RNA in different 'compartments' of the body, suggesting each compartment may possess the ability to be an indepenent replicatory breeding arena.
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16144125&query_hl=7">Occult viral hepatitis and noncirrhotic hepatocellular carcinoma</a>
This story points out the need for any SVR to keep an eye on the state of the health of their liver over time - based upon the experiences of occult HBV.
(post continued below)
I got very little info on the study they are proposing for my husband. It is called the InterMune 003 whatever that is. I have looked and I know InterMune will involve infergen but that is all they could tell me for now. They said they will know more in 2-3 weeks. Said it was suppose to start in january sometime.
Anybody hear of this one?
Thanks!
Anybody hear of this one?
Thanks!
TnHepGuy: Glad to see you back again! Your input and research links are always highly appreciated!
Of course, the links above, as you might expect, do not shock me at all, because I still believe that there is much, much more to learn about the insidious ways of the HCV virus. I have always been concerned at the number of SVR's who seemingly continue to experience a wide range of HCV-like symptoms. Viral memory.....interferon hangover.....circulating immune complexes that just have not yet learned to behave.....these are the standard doctor answers.
My take is that maybe all these studies showing viral persistence, compartmentalized virus, cellular immunity to HCV in various patient tissues, and often in tissues of close contacts who are anti-HCV 'negative'....that maybe all these studies are on a path to something...something we may not want to know about.
I have been more relaxed lately about this whole issue, maybe more fatalistic...figuring that over time the puzzle pieces will all fall into place...with proper worldwide research and corroborating studies. I have been watching the odd findings produced by these studies, and taking in all the forum feedback from SVR's...to see if there is some pattern, or set of issues common after SVR. Discovering the underlying causes and mechanisms will be the real breakthrough. At this point I am happy to have an 'apparent' zero viral load, and a liver without any inflammation after almost thirty years of elevated lft's.
I sometimes doubt that I will ever feel fully 'right' again, and maybe that has to do with unproven persistence issues (which I suspect), and maybe not....but I do feel lots better than during the years leading up to my two tx'es.
I personally think we all need to keep this issue in the open, and keep an open mind on the implications. We need to follow the trail and get more answers, but at the same time, we need to restart our lives and experience the healing and change in health we have achieved. Kind of celebrate and rejuvenate, but with an eye to the future, and discovering ways to continue getting even 'more cured'.
Great to hear from you!
Jim: Best wishes to you as well. I know you have put in a lot of work on your tx, and are a strong support and voice on this forum. When we 'debated' a bit in the past, regarding some of my more audacious theories, I think it was very healthy. I see some scary patterns, and follow the logic in most cases, but I also get way ahead of myself and the research world in some of my speculation. I by no means mean to say that some of my very drastic concerns are in any way validated or proven by any research. I am only trying to follow the stream of logic based on some of my observations and anecdotal evidence.
Do keep me honest, and feel free to challenge off the wall stuff whenever it warrants. It is the only way we can get the breakthrough thinking we need to understand what is or is not really happening.
My concern about compartmentalized/ localized transmission, outside the bloodstream, is still just that: a concern based on some very strange observations, and fueled by research that sometimes indicates the virus MAY potentially reproduce in these other tissues/ organs/ systems. It is not a stretch to envision virus that reproduces in salivary tissues, then moving to other salivary tissues when there is sufficient contact. BUT, the underlying assumption, that the virus reproduces in these tissues, is still in dispute, being questionned, and fuzzy....though a variety of studies say it actually DOES! That would be disturbing...and point to 'occult' infection in many, that may not be in the blood or liver. But again, my aggressive speculation only...but supported by findings of cellular immunity in tested tissues of close personal contacts, etc.
So, bottom line, I am now quietly waiting to see which shoe drops next. I don't have the means to validate or rebut any of my concerns. So I am trying to speculate less, and enjoy more. I know that will be relieving to many on the forum. I have tried to not be provocative for it's own sake, but to explain odd observations I have noted among various 'non-HCV infected' contacts and relations. I may be WAY out in left field ultimately, and I REALLY hope that is the case, to be frank about it. But I do not like the research that keeps pouring out, around the world. Disconcerting at least.
Keep up the great fight, and get CURED! By any standard, it is where you want to be...and will be!
Best to all of you on the forum.
DoubleDose
Of course, the links above, as you might expect, do not shock me at all, because I still believe that there is much, much more to learn about the insidious ways of the HCV virus. I have always been concerned at the number of SVR's who seemingly continue to experience a wide range of HCV-like symptoms. Viral memory.....interferon hangover.....circulating immune complexes that just have not yet learned to behave.....these are the standard doctor answers.
My take is that maybe all these studies showing viral persistence, compartmentalized virus, cellular immunity to HCV in various patient tissues, and often in tissues of close contacts who are anti-HCV 'negative'....that maybe all these studies are on a path to something...something we may not want to know about.
I have been more relaxed lately about this whole issue, maybe more fatalistic...figuring that over time the puzzle pieces will all fall into place...with proper worldwide research and corroborating studies. I have been watching the odd findings produced by these studies, and taking in all the forum feedback from SVR's...to see if there is some pattern, or set of issues common after SVR. Discovering the underlying causes and mechanisms will be the real breakthrough. At this point I am happy to have an 'apparent' zero viral load, and a liver without any inflammation after almost thirty years of elevated lft's.
I sometimes doubt that I will ever feel fully 'right' again, and maybe that has to do with unproven persistence issues (which I suspect), and maybe not....but I do feel lots better than during the years leading up to my two tx'es.
I personally think we all need to keep this issue in the open, and keep an open mind on the implications. We need to follow the trail and get more answers, but at the same time, we need to restart our lives and experience the healing and change in health we have achieved. Kind of celebrate and rejuvenate, but with an eye to the future, and discovering ways to continue getting even 'more cured'.
Great to hear from you!
Jim: Best wishes to you as well. I know you have put in a lot of work on your tx, and are a strong support and voice on this forum. When we 'debated' a bit in the past, regarding some of my more audacious theories, I think it was very healthy. I see some scary patterns, and follow the logic in most cases, but I also get way ahead of myself and the research world in some of my speculation. I by no means mean to say that some of my very drastic concerns are in any way validated or proven by any research. I am only trying to follow the stream of logic based on some of my observations and anecdotal evidence.
Do keep me honest, and feel free to challenge off the wall stuff whenever it warrants. It is the only way we can get the breakthrough thinking we need to understand what is or is not really happening.
My concern about compartmentalized/ localized transmission, outside the bloodstream, is still just that: a concern based on some very strange observations, and fueled by research that sometimes indicates the virus MAY potentially reproduce in these other tissues/ organs/ systems. It is not a stretch to envision virus that reproduces in salivary tissues, then moving to other salivary tissues when there is sufficient contact. BUT, the underlying assumption, that the virus reproduces in these tissues, is still in dispute, being questionned, and fuzzy....though a variety of studies say it actually DOES! That would be disturbing...and point to 'occult' infection in many, that may not be in the blood or liver. But again, my aggressive speculation only...but supported by findings of cellular immunity in tested tissues of close personal contacts, etc.
So, bottom line, I am now quietly waiting to see which shoe drops next. I don't have the means to validate or rebut any of my concerns. So I am trying to speculate less, and enjoy more. I know that will be relieving to many on the forum. I have tried to not be provocative for it's own sake, but to explain odd observations I have noted among various 'non-HCV infected' contacts and relations. I may be WAY out in left field ultimately, and I REALLY hope that is the case, to be frank about it. But I do not like the research that keeps pouring out, around the world. Disconcerting at least.
Keep up the great fight, and get CURED! By any standard, it is where you want to be...and will be!
Best to all of you on the forum.
DoubleDose
While I don't share all your concerns, your studies and out-of-the-box thinking on occult virus opened my mind to whole new avenues of thought on this disease. Please keep coming back with more stuff or just to chew the fat. Glad you also feel more relaxed about things. Stress is a killer, perhaps even more than the virus.
-- Jim
-- Jim
I too have a lower than normal Hmg. Mine is 12.8 as of 10/27/2005 and my RBC is 4.01 which is also a bit low. I've been off TX since June 27th, 2004 so I too am having one long hangover. Like you (I think) I did extended TX and my surgeon warned me that I might have a residual anemia from all the TX but I just wanted to clear and was willing to risk it. I feel okay with a Hmg of 12.8 and wouldn't even know I was low were it not for the labs. My WBC is >6 so that's no problem and overall my labs look great - and my Heptimax of 10/27 was clear too. Mike
the study was not done on SVRs it seems. Last yr there was a debate here about the brain barrier and whether hcv could cross it and interferon too...it got heated(surprise). The feeling is that if the blood can reach the tissue, so can the meds and thus eliminate the hcv.
as for the case and the steroid, it seems that the person might not have been a true SVR, we don't know what PCRs were performed and how sensitive they were, but it apparently was not sensitive enough to detect a very low viral load this woman was harboring. So when steroids were given, the virus was able to replicate more, when they stopped the med, the VL went undetected again. I think this is a case of a unique immune system and not so much of an SVR relapsing, but it makes for good speculation and leads to a publishing which always is the goal of researchers.
as for the case and the steroid, it seems that the person might not have been a true SVR, we don't know what PCRs were performed and how sensitive they were, but it apparently was not sensitive enough to detect a very low viral load this woman was harboring. So when steroids were given, the virus was able to replicate more, when they stopped the med, the VL went undetected again. I think this is a case of a unique immune system and not so much of an SVR relapsing, but it makes for good speculation and leads to a publishing which always is the goal of researchers.
that seemed to be the conclusion of the person I spoke to at VRTX. I missed last year's discussion as I didn't even lurk then. I am currently re-scouring the abstracts at AASLD to see if I find anything.
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