Thanks Mike. Can always count on you to give info.
Interesting b/nothing new. And that same old marijuanna study of 200 people w/no control factors-such as overall health, means of transmission of the virus, current living conditions and economic stability. apples to oranges. how many drank, how much, what other drugs-iv's?-ciggaretts? most non'pot users smoke way more tabacco products.
I think poor eating habits and poorer stress management tools and people are too damn fat are all things that are more harmful than a natural AD. And where are all the AD damage and addiction studies. And did they sort out the fat diabetics who did and didn't take natural or artifical AD's?
Marijuanna ia an AD and should be studied on an equal playing field w/other AD's and sleep aids.
Til then, don't be a muck raker! Pot is a proven medical help for many. if you wnat to push Rx AD's, pls do b/don't just take any old flawed study that was constructed to prove a point as gosple.
I personally think that all those people on Rx's AD's are crazy to take such powerful, addictive, toxic drugs.
Are you calling me a "muck raker"? I just posted the site. Mike
I know you're just posting. I'm annoyed @ all these 'statistics' that 'studies' throw out. somewhere in my under grad studies I took a seies of classes on 'stats'-I was fascinated b/35yrs ago there wasn't much work in that field-statistian-b/my very favorite study was how to lie w/stats-how to interpret any info to prove a point. Our execises was to take the same data and reach opposite conclusions.
Well. a whole lot of other people must have taken that same course b/c everyine's doin' it.
And apperently there was a future for a statistican. They used stats to lie to me!!
B/the sad part is there really is no new news on the hep c front. We all now that 3+million hep c victims in the usa is lowballin' @ best.
I recently read that there are 40 million hep c victims in China alone. More people are dying in hep c in the usa than aids.
The powers that be should be concentrating on getting the word out to the sick and protecting the well.
I was horrified seeing all the 'field' transfusions the Iraqies were performing in Fallugia. All I could think is what new form will blood bourn diseases take next!?!
I consider hep c to be a blood disease that attacks the whole body w/an emphasis on the liver-the body's filter for toxins. The corrosive nature of the by products destroy the liver.
I know now not to even call it a liver disease. It doesn't pass from liver to liver. It passes from blood to blood.
If we could just seperate the blood disease from the stigma of being somehow 'dirty', maybe then we would see some real research.
Like AIDS was considered a 'life style' disease and so much time was wasted on 'life style' issues instead of the AIDS virus. Now AIDS is a pandemic disease that is mostly sexually transmitted in Africa.
As long as hep c is considered a junkie disease, the sufferers will not see an effort to rid out country of it. the moral majority controlls the purse strings and they think that AIDS and hep c are god's punishment.
The fact that hepatitis c is primarily a blood born disease doesn't change the basic fact that it is a liver disease. Blood is merely the most frequent mode of transmission. I assume almost any serious disease has implications beyond the primary organ affected. Heart disease is not transmitted heart to heart but I don't have any trouble labeling it heart disease. Hepatitis is by definition a liver disease. But what that has to do with the study cited escapes me. I personally don't have an opinion about the impact, if any, that marijuana has on fibrosis. I agree that the study was limited and the article certainly doesn't go into detail but I can't defend or argue the conclusion that frequent marijuana use increases fibrosis progression because I have no idea whether or not it does. I definitely didn't intend on sponsoring the article - I just found it interesting and since marijuana use has been discussed frequently I thought some people might be interested in reading it. Mike
I had labs drawn 12/7 and I'm still clear. I was going to wait until next month but I figured that since I was getting labs anyway I may as well get the Heptimax. I knew that if I saw my enzymes elevated I'd worry so I just got it done. December 27th will be 6 months post tx so it is looking good for me - I think. If I do reach SVR I will attribute it to the extended tx at full dose. On the article I posted it had numbers for transplant patients and SVR and those stats looked very discouraging. I think they were dosing at 800 mg. ribavirin and I get the impression that generally that is too low of a dose. Anyway I wanted to tell you my news but was hesitant because of your diappointing results. You seem to have handled it as well as anyone could have and after the long course of tx I know it must be hard. This disease is a *****. When people ask me about hep c I tell them it's hard to give to anyone and even harder to get rid of - at least it was for me. Mike
I've been away for a good while and trying to wean myself from my former obsession with hcv studies, but Mike and Ken's links to the Medscape summary of this year's AASLD meeting and to that excellent <a href="http://www.aidsinfonyc.org/tag/coinf/hcv2004/index.html">Swan and Raymond <a/> book have got me right back into those bad old habits. The <a href="http://www.hepcassoc.org/aasld2004.html#cannabis">Hezode</a> study may well be preliminary but there doesn't seem to be any reason to discredit it . The other factors they found correlated with increased fibrosis have all been confirmed in other studies (inflammation, age at infection, alcohol intake, hyperglycaemia) and the presence of a proposed mechanism (CB1 receptor upregulation) suggests the correlation may in fact be the cause. Looks like grass may well be headed the same way as alcohol, cocaine and donuts.. The <a href="http://www.mediwiss.de/Persistence%20Radkowski.htm">Radkowski</a> study seems to make a pretty strong argument for keeping "cured" in parentheses ("only 2 out 17 (SVR) patients were consistently HCV RNA negative in all analyzed compartments"). On the other hand, I thought the improvement in fibrosis in the pre/post bx's was pretty good news. As long as the post-tx immune response is sufficient to limit damage, does it matter if the virus persists? This is the same guy that first reported HCV RNA crossing the blood-brain barrier a couple of years ago, and now there's a growing pile of studies confirming cognitive effects. Interesting stuff - thanks for the posts.
My goodness it's been a long time. Well I'm glad to see you here and hope you have been well. How are things with you? Have your sx gone? How long post tx are you now? Did you ever get a post PCR? Maybe you posted this stuff but I never saw it. I've wondered how you are more than once. Anyway, glad to hear from you. LL
thanks for asking. I hope all's well with you and wish you all the best in your upcoming tests. For me it's coming around to a year post tx. I haven't yet tested and think I'll wait another year since I'm still enrolled in my very own clinical trial with a sample of 1 : "Is post-tx quality of life correlated with SVR?". At this point, I don't have a clue. Most days are good, some not so good. How much is age? I think the meds accelerate normal ageing. Lately I've been bothered by that old familiar upper-right quadrant discomfort, which is pretty hard to pin to age, so if I had to pick today I'd guess relapse, but who knows? There's really only two things I'm absolutely sure of : it's good to be alive and it's absolutely great to be off those meds!
Very good to see that you've posted here once more. And good to hear that on balance it appears as if your post-tx trauma is relatively minimal.
I'd also like to take the opportunity to say thank you. When I first came to MedHelp nearly a year-and-a-half ago you, more so than anyone else, inspired me to dig for information, dig deeper for even more information, and then to dig deep inside of all that information. The end result being that I've gained knowledge that has proven greatly useful and beneficial during the course of my tx - and beyond.
I hope all is well as you continue on with your personal 'study-of-one'. And may God's blessings and mercy be upon you.
Great to hear from you...I often wondered how things were going. Please keep in touch with the forum...we miss your interaction.
By the way, the Radkowski study is very disturbing, as I interpret it, and reinforces my fears of 'HCV causing all the post-tx, SVR symptoms' Why do so many SVR's continue to have fatigue, cognitive problems, arthritic issues, etc. etc.
Are other studies looking at the same issues as the Radkowski study?? What is the US HCV scientific community saying in response to the study??? Ignoring it???
How about Schering Plough, etc???? Bet you won't see them trying to replicate the results!!!
Great to see you back as well. Hopefully we can all help stimulate lots of questions and provide access to new research for all our members to share. I think we need to constantly 'push' the medical and scientific communities to explore all the HCV issues as thoroughly as possible, AND to listen better to the people who have HCV, to understand where the real issues and questions lie.
Look at the Radkowski study linked by Willing (above), and think about how many doctors have summarily 'blown off' questions from patients regarding the possibility of HCV persisting in various organs AFTER the big SVR! "You're cured son, go have a good life, and don't ask any more questions"... "The interferon hangover will be gone in a month or two...maybe three... so go celebrate!" "This is a liver infection, usually without any real symptoms"....etc. OK, I see. Sorry for asking such goofy questions doc!
Anyway, welcome back.
Some thoughts after reviewing the abstract are:
- as far as this study calling into question long-term SVR, I just don't see it in there. "<i>Viral sequences were also detected in livers from 3 patients (180 to 466 genomic eq/?g RNA), but negative strand was not found.</i>" This information coincides with the study (I don't have it handy now) from about five months ago which showed partial viral persistance within the liver in some long-term SVR's, but no replication taking place. Given that the liver truly is the place where the virus both breeds and dies, any relapse after long-term SVR would seem to have to involve negative strand RNA replication within the liver - from which it could then 'explode' into the rest of the body. And it doesn't seem unusual at all to find viral 'remnants' and 'crumbs' left over within the body after infection. For example, this happens after someone has the flu virus. Also, the earlier study looked at both chemically cleared SVR's (i.e. - interferon-induced) as well as spontaniously cleared SVR's. And each showed similar traits in terms of viral remnants and negative strand RNA. And most telling of all to me is that in neither of these long-term groups (interferon group - 10+ years post SVR; spontaneous group - quite possibly even longer clearance) is there any hard, clear data showing relapse years down the road. They remain virus-free and in general show the improvements in liver histology, etc. - that are associated with long-term SVR.
- possibly disturbing in this study, though, is that it does show "<i>HCV RNA negative strand was detected in 6 (21%) of 29 HCV RNA positive cultures</i>" in lymphocyte and macrophage samples. This may point to very low-level, non-replicable persistance being held in check by the body's immune system (as refered to by 'willing'). Which leaves open the question of what could possibly happen if one's immune system were to become compromised at some stage in time. Would the negative strand RNA then be able to 'overwhelm' the 'balance' that had been in place, thereby making it's way into the liver to begin the accelerated 'breeding' process?
- also potentially disturbing is what 'doubledose' has eluded to: what could the possible long-term effects be from having low-level persistance occur within certain areas of the body, irrespective of if there is any relapse or not? Could this possibly explain things like auto-immune and similar affects? Does the immune system therefore always remain 'suboptimal' as a result, since it has this constant battle to fight? Is this negative strand persistance in other areas/tissues of the body, and causing long-term sx's as a result? Also, it would seem logical to assume that if this type of persistance does cause problems in SVR's, it would also cause the same type of concerns in anyone actively infected with HCV, too.
Welcome back both of you! You both have been greatly missed at the forum! TnHep,,,How are you feeling lately on the meds and don't you finish up soon? Best Wishes to you...
Great to see you here! How are you doing? Are your sx in control now? Whats up? I am starting formal guitar lessons in January, are you playing?
What a nice thing to have both you and Willing on the board. I love reading this stuff. I feel fairly knowleageable about HCV and much of it came from info on this board. Glad your back. LL
Boy, can I ever relate to that. My GI tells me to "quit obsessing" about the disease" and "quit reading so much." He acts irritated if I ask any questions. The answers he does throw out as crumbs to appease me, are often ridiculous....."I won't be surprise if you clear the virus, but I also won't be surprised if you don't." (Wow! That sure covers all the bases, doesn't it?).
It's absolutely maddening and insulting to have to try so hard to tap into their knowledge base. Wait a minute...maybe their knowledge base isn't as formidable as we think.
<u>mikesimon</u> - congratulations on continuing down the path of SVR. That recent study (though small and limited) showing 100% correlation between 3-month and 6-month PCR/SVR results - if fully born out - is good news for anyone who cares not to wait so long. I've decided to go with a 3-month'er myself. But since my LFT's were elevated prior to tx, I can keep any eye on them and hopefully gain some knowedge via those results prior to the 3-month date.
<u>chevygal55</u> - wonderful news to hear of your SVR. Congratulations and hopefully you can take some solice from that 3-month study (mentioned above) as you go into your 6-month'er.
<u>doubledose</u> - good to see you, as well. This virus truly is a riddle wrapped in a mystery inside an enigma.
<u>honey15637</u> - thank you for the welcome. How are you and hubby holding up here near the end? I'm still hanging on by a thread or thereabouts. I finish all my meds on January 8th.
<u>layla</u> - very good to see you again, too. I hope things are going well for you and your family - especially as you head into the holidays. I'm doing as good as these lousy meds will let me be - and counting the days from here. My guitar playing has been suffering as of late - which of course means that my wife's ears haven't ... ahahahaha. Glad to hear that you're decided to go forward with lessons. You'll be playing like James Taylor in no time flat.
For anyone who's interested, here are a few links I ran into on the subject of SVR and durability:
<a href="http://www.natap.org/2004/AASLD/aasld_20.htm">Durability of SVR, 5 Year follow-up Pegasys plus Copegus</a>
<a href="http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-74.html#11">Response to Hepatitis C Therapy Can Last for Years</a>
<a href="http://www.natap.org/2003/Jan/010803_1.htm">Is HCV Curable?</a>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15554429">Central nervous system involvement in hepatitis C virus infection</a>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15548803">Is screening for interferon retinopathy in hepatitis C justified?</a>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15498589">Virus evolution within patients increases pathogenicity</a>
Thanks for the links above. The central nervous system issue is one that deserves much continued study! If the brain and nervous system are indeed becoming infected with the virus, then we need to know whether that infection subsides upon SVR, or if there is a separate, and sustainable infection within brain/nerve tissues that might be the cause of lingering or ongoing symptoms after the 'apparent' SVR. Maybe there are mutant strains that favor blood/liver, versus nerve/brain tissues, or lymphocytes for that matter.
I do not say this to be an alarmist, but to try to stimulate interest in finding out much more about how this virus works, and why we have this well defined range of multi-organ symptoms, before tx, after tx and for many people well after SVR as well.
I am thinking that, in the case that we are still experiencing disease activity, of a different sort than when our blood and liver was a source of infection, then we will eventually need treatments that will go further, and address the other 'reservoirs' or systems containing either the virus, or some mutated version, or a pathology related to the virus.
I am aiming toward TOTAL cure, somewhere down the road, (MAYBE we ARE already there now, but I have many doubts, in light of all this emerging research), and ideally, with new drugs, we will be able to eradicate the virus totally and permanently, wherever it may exist, and also treat the consequences of having had the virus for years (fibrosis, autoimmunity, brain fog, depression, etc.)
Science is probably lagging behind as far as answering this line of questioning. I waited 30 years to get my SVR, and I am willing to wait a few more to do whatever is necessary to ensure absolute success. Maybe we won't have to do anything else, but I am keeping an open mind, and watching the new research closely. No sense in pretending, IF there is another aspect of the disease that we may need to address.
thanks for the kind word. I'm a bit conflicted about the benefits of pursuing hcv research. On one hand it's endlessly fascinating to learn more about such an intimate enemy. On the other other hand it really doesn't help get on with living the rest of one's life. After discovering that, by and large, contemporary medicine understands little and can do less, you're back to attitude and adaptation, regardless of how the ifn/riba lottery treated you. And these are much harder topics to talk about (at least for me) ...so back to Marek and his bad news. It's hard for me to see this as anything but evidence that in most people the virus replicates, in the liver and elsewhere, long after SVR. Negative strand RNA is a short-lived intermediate created during replication and thus presumably harder to detect than plus strand RNA properly ensconced in its protein coat.
With RNAases constantly chewing up and recycling whatever they run into, the detected RNA would have to be of recent vintage. Purists who want assurance that they've eliminated every last virion probably need to wait until they stop making hcv antibodies and/or show no RNA after taking immunosuppressants. For most people however, "cured" means a working liver and that's not inconsisted with an immune response that keeps viral replication at a low-level (for years and years as confirmed by many studies). Since damage to our liver is not done directly by the virus but by the immune response to its presence, even low-level warfare is not great news, but it's probably good enough to get through one lifetime. Since we're just starting to quantify the impact of infection outside the liver during full-blown chronic infection it seems that any discussion about the impact of residual, low-level, post-SVR infection outside the liver will have to be guesswork for a long time yet. Still, it means that even SVRs may have a reason to be interested in the new meds that directly target the HCV replication cycle.
I just want to ditto what everyone else has said welcoming you both back. You were greatly missed and in my prayers often. Your research and knowledge helped enormously while I was going through tx. and the long months I had to wait to start. God bless you both. Joni
When I found this site a year ago, I began cutting and pasting and printing virtually everything posted by Willing, TnHepGuy and Doubledose. I actually have a file folder full of their stuff. My own knowledge base was, in large part, developed by learning from them.
Anyone out there who has been recently diagnosed with HCV should pay close attention to their postings (in case you haven't figured that out already). While this board, unfortunately, can often be filled with nonsense, you can always count on these guys to come through with useful information.
My hat is off to them.