Occult Hep C Info

[TnHepGuy_]

(this first study discusses negative-strand HCV RNA)

<a href="http://www.natap.org/2006/HCV/012506_01.htm">Significance of liver negative-strand HCV RNA quantitation in chronic hepatitis C</a>

(these relate to occult)

<a href="http://www.natap.org/2005/HCV/010305_04.htm">Persistence of hepatitis C virus in patients successfully treated for chronic hepatitis C- 2 Editorials</a>

<a href="http://www.natap.org/2005/HCV/090505_20.htm">Occult HCV- HCV RNA Found in Liver of Patients Negative for Antibody-HCV & Serum HCV RNA</a>

<a href="http://www.natap.org/2005/HCV/090505_10.htm">EDITORIAL COMMENTARY Hepatitis C Virus (HCV) Occult Infection or Occult HCV RNA Detection?</a>

<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15831916&query_hl=1&itool=pubmed_DocSum">Hepatitis C virus replicates in peripheral blood mononuclear cells of patients with occult hepatitis C virus infection</a>

<a href="http://www.medscape.com/medline/abstract/14702147?queryText=occult%20hepatitis%20c">Occult hepatitis C virus infection in patients in whom the etiology of persistently abnormal results of liver-function tests is unknown</a>

<a href="http://www.natap.org/2005/HCV/090505_13.htm">Reemergence of Hepatitis C Virus after 8.5 Years in a Patient with Hypogammaglobulinemia: Evidence for an Occult Viral Reservoir</a>

<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16144125&query_hl=1&itool=pubmed_DocSum">Occult viral hepatitis and noncirrhotic hepatocellular carcinoma</a>

[jmjm530]

DD: We know almost nothing about what might really be going on with HCV in the brain, bone marrow, CNS, organs and organ linings, connective tissue, lymphatic system, eyes, and on and on...but I keep seeing all those red flags waving like crazy..There are too many extrahepatic issues, too much peripheral damage, too many studies, too much RNA evidence mounting, that lead me to suspect that the virus might just be more adventurous than most have ever imagined..but I still think there is more going on than meets the eye..
===============================================
DD,

Wasn't it only last week that you making similar conjectures about the treatment drugs as opposed to occult/persistent virus?

How many complaints have we read here and elsewehere about tx-induced memory loss, eye problems, joint and connective problem, post-tx depression, etc?

I do agree with the last sentence but based on current evidence would like to believe that any residual manifistations of hep c beyond SVR are somewhat insignificant compared to the residual effects of the treatment drugs themselves, not to mention other health issues most of will face as we become older. Remember (and that's getting hard for me post tx :)) -- all these articles appear to state that so far no clinical significance has been found with occult/persistent virus. I do know a lot of people objected to the social/political significance of that army study posted recently. But the one thing that did strike me was that those untreated for hep c seemed to fair about the same as the general population in regard to hospitlizations and overall health.

It's great that we have so many researchers currently working on the subject of occult/persistent virus -- but how soon do you think it will be when we will be able to post here the same number of articles on the long-term effects of combo treatment? Which drug company will step forward first to fund it. LOL.

As always, thanks for the discussion.

-- Jim

-- Jim

-- Jim

[Snookmiester]

"the meds do more damage than Schering/Roche or your Dr. will tell you. On a biochemical level, they are quite crude and amount to revving your body in a hyper anti-viral mode for far longer than your body would ever maintain on its own. As best I can tell, there was no major damage from that year, but I feel as if it aged me about five. The effects did not fade for at least 18 months. Short term memory and language-specific cognitive function degraded much faster than per normal, age-related, deterioration."
________________________________________________________________


Man, I couldn't agree more with that statement. I'll never forget the HONEST answer I got from Schiff during a consultation at week 42 about extending.. He said, there are more risks than benefits!!
I went in to tx at only 26 years old, and feel like I came out about 35-40 maybe? Post tx, although I obtained the SVR title, I suffer greatley from increased joint pain, mental disorientation, and fatigue..

[MissMiss]

Brain fog

What does HCC mean?

[can-do-man]

Hepatocellular carcinoma is cancer that arises from hepatocytes, the major cell type of the liver.

[cuteus]

some of these articles seem to have a recent date, but I remember reading them before, odd. I remember Castillo et al from an article on persistence last year, how do they show up again as new articles?
anyway, I always like to read these articles after a discussion on persistent HCV:
http://www.natap.org/2005/HCV/010505_02.htm
http://www.natap.org/2005/HCV/090505_19.htm

while some folks might be harboring some strands that might or not effect any response in their bodies. others can safely say they are cured!

[Alady1620]

I wish I could contribute to this discussion bc I know it is important.  I just can't focus right now.  Ugg.  I hate this.

[mikesimon]

Thanks so much for the links. There is quite a bit of reading there my friend. I read the Radkowski study when it was first published but the editorials are brand new to me and I appreciate you posting this stuff. Mike

[mikesimon]

I gotta agree with you there old friend. I remember when before I started this HCV & transplantation journey I subscribed to the theory that it was smart to "prepare for the worst" believeing that somehow one could get prepared. But I learned that you're never prepared for the worst no matter how much you think about it and no matter what you do to convince yourself that you're ready. When the worst comes no one's ever ready. So enjoy life now as best you can  and don't look too far down the road and if, by chance, the worst comes you'll deal with it then. Hey, I'm SVR and I love it! Mike

[willing]

Scott - I'm truly sorry you've been given this new challenge to deal with. As best I can tell, you're a pretty fierce fighter - now's no time to give in.

All - interesting discussions. This morning I had blood drawn for my yearly physical, and  finally requested an RNA quant. As some of you will recall I finished tx over two years ago and refused to test at the time. I found tx (geno 1, 48 weeks) a thoroughly miserable experience and was interested in (1) putting my life back together (2) determining on a purely subjective basis whether tx had improved the time I had left to live: could I tell that life was better regardless of what the tests said.

I won't have the results for a couple of weeks and so my outlook is still uncontaminated by objective results. I thought I'd share a few impressions/prejudices I've picked up along this path.

- overall I feel something has "gone" and would guess the test will show SVR. The waves of fatigue and disorientation  that were common before tx now seem very rare.

- the meds do more damage than Schering/Roche or your Dr. will tell you. On a biochemical level, they are quite crude and amount to revving your body in a hyper anti-viral mode for far longer than your body would ever maintain on its own. As best I can tell, there was no major damage from that year, but I feel as if it aged me about five. The effects did not fade for at least 18 months. Short term memory and language-specific cognitive function degraded much faster than per normal, age-related, deterioration.

- HCV is a wily enemy. The goal of tx is not its complete eradication, which is impossible with current technology, but reaching a new equilibrium point between your immune response and the virus, in short to lessen the chances of a premature death from ESLD or HCC. Regardless of how much low-level replication continues in various cell types ( and I do believe Radkowski's PCR data) the full-blown HCV-producing factory in the liver gets shut down or at least severely disabled.

- our ignorance is vast. Despite good progress, most of us will be long gone before any understanding issues such as extra-hepatic symptoms or even a simple detailed trace of RNA packaging affect clinical practice.

- this forum is the single best antidote to the virus or to the effects of tx.

[cuteus]

there you are willing! I thought you had move your date from Feb to April! so now we wait for the confirmation of that svr. is it the qual or quant?

as for the cognitive effects, it worried me that a state similar to what appeared during tx in regards to memory and language had emerged months post tx, so, I began taking acetyl l carnitine. it has been studied in relation to alzheimer's and stroke, so what could I loose? after a month, I must say that something is finally "clearing" in my head, it feels subtle, but very noticeable to me, as I am recalling the proper words quicker as well as remembering things better. It could be the combo of this supplement and Sam e, or just it by itself. Worth researching.

stay well

[mikesimon]

It's nice to see your name again. I too think you're clear. I hope so anyway. Mike

[Bill1954]

Glad you stopped in again. You gave me quite a bit to think about last year as I was considering increasing my ribavirin dosage to 1800 mg/day. Here is one of the threads:

http://www.medhelp.org/perl6/hepatitis/messages/38725.html

I completed 56 weeks of high riba Tx 30 days ago, and post treatment PCR results are currently pending. I

[Bill1954]

Glad you stopped in again. You gave me quite a bit to think about last year as I was considering increasing my ribavirin dosage to 1800 mg/day. Here is one of the threads:

http://www.medhelp.org/perl6/hepatitis/messages/38725.html

I completed 56 weeks of high riba Tx 30 days ago, and post treatment PCR results are currently pending. I

[DoubleDose]

Great links and great discussion.  This is what I love about the forum.  Lots of input, analysis, feedback, and opinion.  We are all learning a great deal about the virus, even though there are many unanswered questions, and we are learning to balance uncertainty along with a positive approach to life, and a healthy appreciation of our SVR status, (whatever it does and does not involve).

As someone suggested yesterday, we should encourage the HCV doctors and professionals to visit, and absorb the content on this forum.  It would provide them with better perspective, prod them into asking more questions, and demonstrate that the 'average' HCV patient might be a bit more sophisticated than they realize!

Excellent discussion....and WOW...no 'hotheads'!

DoubleDose

OK, so I lied, so I am not entirely 'retired' from the forum yet.

[jmjm530]

Sorry I came into this so late -- and admittedly unprepared as I have not had time to go over the studies posted -- but I did want to get this question/thought in before folks disappeared into the night.

My understanding on occult/hidden virus is that as of now, no definitive studies exist which suggest the virus is replicating, as for example the virus in our bodies before we SVR. And according to my hepatologist, if it's not replicating then it's not going to do any harm -- or at least nothing suggests it will.  Sort of like debris on a battlefield after all the bad guys are killed off.

If anyone has anything that suggests otherwise, please post as this subject is of great interest to me.

Good luck Willing with your PCR! Given I believe your enzymes are still in the normal range, I don't think you have anything to worry about -- plus you seem to handle things better than most of us anyway.

-- Jim

[Forseegood]

yeah, I agree with you there, I love the exchange of info and ideas, though I'm not quite as hopeful re the medical community reading HCV forums, although I do like the points Pretty made...in my experience I was always thankful if a doc of mine just kept up with current studies! I know they are soooo busy, but you'd think that most of them would be a bit more enthusiastic about researching out current info, trials, etc...guess the HMO's and such has put a big restriction on their time schedules...another reason to be thankful for these forums and the doggedly analytical patients that you find here and elsewhere...like you fer instance!

Another thing, isn't it great that this forum has been so even-keeled for what seems like months and months! I remember just ghost reading here a few years ago, and I didn't venture sticking my toe in here it was so combative...always enjoy lively debates but if it gets too vicious might as well stay on the LA freeways if I want that kind of stress...I get your point about the absence of hotheads...glad you still provide us with your valuable info when you can...

[can-do-man]

If anyone is stage 3, or 4, and achieves a SVR they still need to be monitored for the development of liver cancer. Once you reach that level of fibrosis your are at increased risk of developing HCC. A CT scan, or ultrasound (hopefully both), along with blood tests yearly could be life-saving.

AS a stage 4, i agree with you. Just would add a upper gi yearly

[Forseegood]

wow Snook, sorry youre feeling poorly, but in all my nosyness in asking people about their experiences, what I get is that many many people have post tx sides anywhere from 3 months (if they are lucky) to 6 months, and a year is pretty common in my crude little research...I know you eat right and take supplements, you know that Califia felt much better once she got started replacing Vitamins, especially B12, turns out the meds gave her a big defiecincy...hope you feel better soon and I know you will...

[DoubleDose]

I will do my best to answer your question, even though the answers out there are very 'grey' at best.

The 'Occult thing' we should place on the side for now, because it does not pertain to our HCV tx'ers or SVR's, but only to those oddly infected people with ongoing liver HCV replication, but no blood infection.  Nobody really knows what or why that exists as of yet.

The other item, (which is sometimes mistakenly referred to as Occult virus) is usually referred to as 'residual persistent HCV', or 'persistent virus after SVR', or some similar title.
This 'persistent virus' if it exists, as many researchers claim,
has been found in various blood components, and organs (there is much controversy among the researchers as to the validity of these studies), and in some SVR's studied, the HCV low level RNA has been found in those more than 12 years SVR.  The implication from the researchers is that the low level virus (in the PBMC, lymphatic system, and possibly CNS, spinal fluid and brain,  etc ) must be replicating, albeit at very slow, and low levels.  

Now, the fact that your doctor does not believe that there is any replicating virus remaining after SVR is very much 'par for the course'.  Almost all the HCV doctors believe that the persistent virus research is flawed in some way (though they don't seem to say exactly how or why it is flawed), and that HCV just cannot exist and replicate independently of the blood and liver.

This is where many of the researchers seem to be on a diverging path from the practicing HCV doctors.  There are also SOME researchers that also agree with the docs, and seem to find NO replicating virus after SVR, while a good handful of other research teams continue to find evidence of HCV replication, both pos. and neg. strand, long after SVR, in various organs and blood components.

I have given up trying to make sense of it, for the time being....there is just no real consensus, and there is not a lot of interest in the subject.  I do not think the drug companies want to go anywhere near the issue...its easier to let everyone feel 100% confident that their medications are 'curing' the virus.  I still wonder why the national liver associations are now saying that successful treatment will lower the HCV viral levels to undetectable, rather than saying eradicate, or cure.  They must be concerned about some sort of mis-statement or inaccuracy.

Anyway, the above is my best interpretation of the current controversy, and state of affairs regarding persistence.

Time will tell what the full story looks like.

DoubleDose

[jmjm530]

I appreciate your very balanced presentation.

It is so important when introducing a topic like this to a non-medical audience, to point out that while some *preliminary* studies speculate on occult and/or persistent virus, most hepatologists do not believe that any replicating virus exists after SVR and whatever does exist presents no harm to the host. In fact, even the research advocates of occult /persistent virus claim no "clinical significance" in their findings. Sometimes when I read follow-up posts by folks, it doesn't seem that point has been made clearly enough.

Regarding the definition of "occult virus". Apparently you and THG define it differently. Yours def is quite specific, his inclusive of any persistent virus or viral elements after SVR in blood, plasma, tissue, etc. I just choose to use his definition as many of the arguments against occult virus as a real threat to us SVR's apply to both.

As you say, further research will tell more of the tale, but so far I think it's more of a fascinating, intellectual exercise and not something that anyone about to treat, currently treating or even someone post treatment should get the least bit worked up about. A lot of other real (and proven) problems out there such as the havoc the treatment drugs do to our bodies not only during, but after treatment. I'd say this is 1000 fold more serious than maybe a one chance in 1000 of someone relapsing after five years SVR. Snookman said he's 26 and now feels like 30-40. I went into treatment at 59 years old feeling like 40 and now I genuinely feel my age, maybe older.

-- Jim

-- Jim

[Forseegood]

I wonder how this fits in with the way hep and it's treatments affects stress, energy, etc. if at all....

http://news.yahoo.com/s/ap/20060420/ap_on_he_me/chronic_fatigue_1

on another note, I kept on hearing about hair loss and how people taking Biotin were saying it helped on treatment, etc. so I just started taking it for the heck of it, and you know, my hair is coming in thicker, I can tell the difference, it was kinda thinning a bit...guess the stuff works, at least for me...pretty cheap too...

[jmjm530]

It is amazing how alive one feels when everything is going right -- if I can remember back that far. LOL.

The article makes sense but nothing new. Stress and adrenal overeactions are real killers. OMMMMM.

-- Jim

[Forseegood]

oh go eat some soba...

[jmjm530]

Forsee chants: oh go eat some soba...
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LOL. Can you believe they were out of UNI (Sea Urchin) tonight :(
Had to settle for a salmon/avocado roll with miso soup and edamame.

As you may have guessed, I was a big fan of Japanese food before treating but during treatment couldn't even look at it, as well as many other foods including just about all vegetables. It's kinda nice to see my old taste buds starting to reactivate. I can't attribute it all to the diet -- who knows the role of the lingering treatment drugs -- but my cholesterol dropped in three weeks from 150-170 to 125. That's the lowest I've ever been. My guess all the soy and fiber. Or is it the magical properties of UNI???

-- Jim