looks like the thread is now buried underneath the ruble of newer threads, but to those still peeking, the trip to Boston did not pan out. A very dear AnCom (animal companion) decided it was time to cross the Rainbow bridge, and it was not a good weekend to think of HCV.
If any conferences occur in the tri state area of NY/NJ/Ct I am game to being a pest, but I want company! Seriously, I will check for anything worth it in NYC, there has to be something!
Readings corresponded to the doctors I saw.
Went like this:
First reading, three years prior to tx by hepo 1's pathologist (stage 3). Ended up not treating with him; Second read, one year prior to tx by hepo 2 who I treated with for one week only(stage 3); Third read around 7 weeks into treatment by hepo 3's pathologist who I also didn't treat with but used as a one-time consult(stage 2); Fourth read somewhere mid-way into tx by my treating doctors pathologist to reconcile all the other reads :) call him hepo 4 (stage 2.5); and fifth reading later on in tx as part of my Fibro*scan process (Slightly south of stage 3). So I guess that makes it five readings from the same slide.
But like I said, different readings between stage 2 to 3 isn't really that strange considering it has to do with the "maturity" of bridging taking place and how the pathologist views that.
The Fibro*scan itself showed me somewhere between stage 2 and 3 which was very reassuing since it was current as opposed to three years old. Because of the anti-fibrotic nature of tx, it's c possible that I would have scanned higher before tx as opposed to during tx. Still, I "concluded" that I was a stage 2.5, as did the scan doc. I had another scan four months post tx and it showed me very close to stage 2 which was very reassuring. I wanted to come back in another year but he basically said that I was "through", "cured" and wished me well :) He also indicated that in the next couple of years these machines hopefully will be all around the country.
Part of my angst was that the studies I was looking at lumped stage 3 and stage 4 together in terms of extended tx. Later, the consensus seemed to be that only stage 4 was a negative predictive factor.
It's possible you will also get different reads but if your first was stage 1, I doubt if any of them will be higher than stage 2, which is not a bad place to be sitting at this point in time. Also, if you're as compulsive as me, consider a scan at one of the 3-4 trial centers, assuming the trials are still going on. Dr. S in Miami also has a scan machine but don't believe he's in the trial. Also heard another doc in CA has the machine but not sure who. I'm sure an email to the manufacturer's of the machine will let you know who has it.
All the best.
-- Jim
Second to last paragraph should more accuratly read in part...
"While a stage variance seems like a lot, the difference between 2 and 3 has a lot to do with how an individual pathologist views the extent of the bridging."
In fact, two of the reports (a 2 and a 3) sounded almost identical but each pathologist made their own judgement call. By the book, you're not supposed to get a Metavir 2.5 as the book uses just whole numbers. Still, the pathologist (the one who let me look into the microscope) felt that 2.5 more accurately defined my stage. When pressed for a whole number, said it would be a 2. Why the others decided on a 3 I'll never know because neither of the pathologists were very forthcoming when questioned and that's an understatment :)
I understand what you're saying but in order to unequivocably disprove these newer studies, wouldn't the clinicians mentioned have to in a sense run more or less duplicate test studies? This may indeed happen in the future, but it's understandable why someone wouldn't want to invest a lot of time to disprove something that they and many of their collegues don't believe in. Most of these fellows are putting their energies into the newer class of protease inhibitors.
What about the study DD cited (LB9) where "They looked at serum samples, liver samples, and PBMC samples, and found NO relapses, and only a couple of cases where the liver or PBMC's were found to be HCV+. The rest of the study group were negative in all compartments studied." It might be interesting to look at the complete study as opposed to the abstract and see if any references are made to the studies where viral activity was found.
You're certainly more up to date on this than I am. Why don't you email some of these Clinicians who include pretty much all or most of the "big" names, and see if they will detail their reasoning more. I've had some luck in this regard contacting researchers on other areas of interest to me.
You might even mention Mike Simon's case to them, but unless you really quiz his doctors regarding methodology, etc, I'm not sure how they would be able to respond.
So how do you like them Vertex reports today? I know you think it's still a video game until the SVR data comes in, but within a year a ton of SVR data will be in.
BTW read a bit on your biopsy shopping. Be prepared for different reads. I had the same slide read 4 times and in terms of stage got a 3, 2, 2.5 and another 3. While a stage variance seems like a lot, the difference between 2 and 3 has a lot to do with how mature the bridging is.
One thoughful pathologist let me look at the microscope and I pretended nicely to know what I was looking at. In other words, at a certain point it becomes as much art as science. Still, if I remember correctly you also were staged around 2 or 3? And while you may get some variances, you can feel pretty confidant that you're not a 0 or probably a 1 and certainly not a 4. So in that sense, the biopsies are extremely helpful. The problem is when someone says they were a 3 and then they treated and now they're a 2. Maybe the fibrosis regressed, or maybe just more pathologist bias.
Be well,
-- Jim
the trouble with the many clinicians who dismiss the occult/residual rna detection as sloppy/spurious bench work is that none has yet been willing/able to support this point of view in a peer-reviewed journal. Furthermore, a couple of the occult papers come out of the Mayo clinic, not known for sloppy work (see the tail of the 10/23 2006 Liver Meeting thread below for a list 41 of publications that have cited the original occult study).
If you accept the PCR data, this leaves the non-viable and co-existence theories. The non-viable theory is made suspect by the detection of - strand RNA,a side-effect of replication. IMHO the co-existence theory is the most plausible. I tend to see it analogous to the common stories of an inner-city park/neighborhhod reclaimed from a crack-dealer/prostitute occupation. You haven't really eliminated the problem, but you've changed the equilibrium and the change is durable. Once you develop the right T cell response, it sticks.
In case you missed it, for direct evidence of how an UND <5 blood test can be obtained in the presence of HCV-infected liver tissue see Mike's comments in the 10/25 ITMN-191 thread
MR: He said that those reports are not universally accepted within the HCV research world, and that the test methodologies were being hotly contested by many, including some of his research colleagues. He said they believed their test methodologies were suspect and possibly prone to sampling cross contamination.
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We may be seeing some of the same doctors because that is almost verbatim what one of my consulting hepatologists said :) He also used something like the phrase "questionable tests that were unreproducible using accepted and verified testing techniques". Another doctor questioned the significance of the findings as to whether or not the virus was fully capable of reproducing.
Of course, like you suggest, this doesn't mean occult and persistent virus doesn't exist -- and indeed it may turn out to be a very important issue down the road -- but until something more is put on the table, I'll be more than happy with my SVR. An interesting topic, though.
-- Jim
I'm not sure I buy the can't-be-bothered-to-refute argument. If Pham's observations are bogus, letting them stand unchallenged for 3 years, as the citations to his work pile-up, seems very unlikely. Researchers get excited about much more minor issues, and refutation wouldn't be difficult, eg if the LB9 authors had used the Pham/Radkowski methods in addition the commercial versant tma
(Cuteus : it's Monday, Exhibit Hall C, Hynes Convention center, starting at 8:00 in case you decide to go. Set up as a poster session, so one of the authors should be by the poster most of the day).
4 readings - wow! I'm awed by such thoroughness, and you even got one of them to talk to you (not easy, I agree). For my first two bx's I simply took the word of whoever they were assigned to but since the last result is unexpected (why down to stage 1?, are you *really sure*?) and because I'm betting rather heavily on it (by delaying re-tx)I'd like to get an estimate of observer variance (you say "mild" I say "moderate"..). I'm doubt I can match 4, but thanks for the inspiration!
alot of thes simtoms are normal non hep simptoms, are systems are weakend, the same food can bother peoples stomecs, treas in the yard, one person wea love is sick its hard to sleap, esey to have some depreshion i think? some times a cloud is just a cloud ? i hope! i hae wonderd the same question
DoubleDose,,I totally believe in my heart of hearts that virus is a little bit more contagious than what doctors think. This whole occult thing to me
hit and sent above in by accident...okay the occult thing at the end where the virus is undetect. in blood,,,,,why couldn't that also happen onset of virus,,meaning the virus enters blood stream and lives in the liver,undetectectable in blood until it starts to replicate due to some jolt to the immune system, whether it is stress,such as divorce or close death, other sickness in body etc. So what i am trying to say is Occult in onset, virus explodes into bloodstream after the immune jolt,,,get tx,,svr,,occult again, then if an immune jolt, whether mental trama or something physical such as alcohol etc, its raises its head again, and replicates and shows up in blood, IMO
This is why i too worry about family members. its trasnmission, I believe is more that blood to blood. other virus such as EBV can be caught through saliva, why not this virus,,,if other virus can??or is it because this one is just undetectable for such a long period of time?
Rambled on,,but as far as your question with family members..my husband has constant post nasal drip lately, over 2 years or so and chronic cough, my mother lives with us and has a problem with dry eyes, bad problem with that.
I have lived with my wife for 17 years, my daughter is 13. I was infected for 8 years before I met her. We shared a mechanical tooth brush. I was a rock climber and more than once came home with abrasions on my hands and legs. Neither have tested positive.
The reason you see "familial" HCV in Egypt, is because the govt. there did a massive campaign to eradicate schistosomiasis which spread HCV widely amongst families. In that particular country and instance they see this because the parents unknowingly passed the virus on through m ultiple use of needles.
It is needless worry for anyone to be overly concerned with this happening without a similar multiple use of needles scenario.
here is a study about it
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=139974
"Hepatitis C virus (HCV) infection and schistosomiasis are major public health problems in the Nile Delta of Egypt. To control schistosomiasis, mass treatment campaigns using tartar emetic injections were conducted in the 1960s through 1980s. Evidence suggests that inadequately sterilized needles used in these campaigns contributed to the transmission of HCV in the region. To corroborate this evidence, this study evaluates whether HCV infections clustered within houses in which household members had received parenteral treatment for schistosomiasis."
Curious symptoms might include things like:
* Unexplained dry eye, and salivary irritations.
* Chronic fatigue and unrefreshed sleep, becoming worse over the years.
* Abnormal forgetfulness and noticable short term memory problems.
* Arthritic pains that did not exist in the past, in areas like neck, shoulders, hips, and ribs.
* A reddish flat rash that occurs on the face around the eyes, and comes and goes for no reason.
* A chronic sort of allergic state, with inflamed sinuses and throat, and daily throat clearing, year round.
* New gastric and bowel issues.
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Interesting topic but the symptons listed are very common in the general population and I don't think folks should be unduly alarmed if they see some (or even most) of them within their own family.
I've heard all these complaints from friends and have also read/heard about them discussed frequently in the popular media and not terms of Hep C. How many commercials on TV for example talk about getting "a good nights sleep"; and as to "arthritic pains", just about everyone over 40 seems to start having them.
-- Jim
My xhusband has hepC and has since the early 80s - I have it but don't think I got it from him. I WISH he would get a geno test so I could see because if he is a 1A and 1B like me...what are the chances.
But neither of my kids have it and my daughter used to use my razors all of the time. Boy you LEARNN with this disease don't you>?
Hey everybody, thanks for the detailed responses. I would like to clarify one thing though:
I am not talking about family members testing positive for HCV...to the contrary..I am specifically focusing on family members who are NEGATIVE for the virus. Sort of similar to what MyOwn wrote above. An occult transmission, through tissue contact, or fluids, etc. which is just that: OCCULT, lies dormant in the body, in-check, until there is an immune system dysfunction, or maybe never appearing as a full blown blood/liver HCV infection.
This is what is being researched currently by a top hepatologist: looking at HCV negative family members to determine if they have a 'dormant' infection in various tissues or organs...without any signs on HCV blood testing!
There would also be accompanying symptoms with this sort of infection, and I think that these reported family member symptoms are what is prompting the study. I have observed quite a few symptoms in close contacts that are very 'atypical' to everyone else that is not a close relation. The symptoms are very obvious, chronic, and unexplained on medical examination....and they mimic many HCV related symptoms......and, Oh yes, they all test negative for the virus on blood testing.
Now, if they are finding replicating virus in sexual fluids, salivary tissues, saliva, lymphatic system...then what is to stop the virus from moving from one person to another, in these tissues only, when there is intimate contact? Maybe it does not produce a 'blood infection' and is just held in-check by the immune system....similar to the SVR's who also may now harbor a 'dormant' virus, according to most of the recent research!
I just wanted to clarify just what I am trying to explain.
DoubleDose
Do you have more specifics on who is running the trial/study/research and exactly what protocols they are following?
For example, are they using a control group comprised of families where no one tests postive for HCV.
Good to see you back posting (and alarming :) ) everyone. LOL.
-- Jim
I'd be curious to read what this hepatologist has to say if you have any sites to point to. Glad this doctor is looking inot this.
The stress of living with a family member with a chronic illness is enough to cause most of these symptoms, not to mention normal allergies, and environmental conditions.
HCV sucks big time, and I think there's a tendency to try and blame it for everything that happpens to us and ours. There are a lot of other health issues facing families.
Kim
* Unexplained dry eye, and salivary irritations.
* Chronic fatigue and unrefreshed sleep, becoming worse over the years.
* Abnormal forgetfulness and noticable short term memory problems.
* Arthritic pains that did not exist in the past, in areas like neck, shoulders, hips, and ribs.
* A reddish flat rash that occurs on the face around the eyes, and comes and goes for no reason.
* A chronic sort of allergic state, with inflamed sinuses and throat, and daily throat clearing, year round.
* New gastric and bowel issues.
These complaints could be attributed to an enormous variety of causes.
If your family is experiencing these symptoms, I'd have your houe checked for mold. Homes with a mold problem can cause these symptoms. To attribute them to HCV when not one family member tests positive for HCV seems highly unlikely.
Household mold on the other hand could be a possibility. There are progessional inspectors who can ascertain if your home is contaminated with molds.
i have been married 32 years and my wife still gives blood.
No issues in my household. There are only two of us and Karen is healthier than anyone has a right to be - thankfully. Mike
C28 . Married 27 years and wife is negative. My thoughts are her chronic nagging keeps the HCV away. JMHO
LOL, and you're hoping to make 28? Your odds might be greatly enhanced if you keep here from reading this forum <G>
I will get study details for you. I have been in touch with the group running the study, but have not communicated directly with the chief doc yet. I would like to learn more about the study parameters, and how far and wide they will be looking. Also, to what extent they will biopsy and PCR test the various tissues and fluids, etc. Although it would be nice to see test results also from households without anyone positive for HCV, as a sort of control group, I do not think that it will be necessary as a first step. All they need to find in this study is evidence of active, and replicating HCV in the family members' fluids and tissues. That alone will be a major revelation itself, if that is the outcome of the study. Of course, I hope they find NOTHING of the sort. But at this point, I would not place any bets on that happening. I am more and more convinced that something may be happening, under the radar, as far as 'occult' transmission, and another, different 'mode' of infection.
Let's first see if they find the virus, then consider studying the general population, as a control. Who knows, there might be some revelations in that study as well! I am just happy that they are finally exploring this issue scientifically, since it has been a real concern for me over the recent years.
I hope you are well.
DoubleDose
Thanks for the information. As you know, some question the accuracy/validity of the new testing process itself in regards to at least persistent virus. Having a control would certainly go a long ways in addressing this problem. Willing, I believe, posted that AASLD study abstract # LB9 suggests that the absence of post SVR virus in all compartments studied including PBMCs and Liver tissue with the exception of just a few cases. Then, of course, other studies, using different amplification/centrifugal techniques suggest the virus is quite common in these same compartments.
Be well,
-- Jim