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Medical Forum / Diseases and Disorders / Hepatitis / October 2004What can I do now.
I wonder if somebody knew about alternatief treatment. I have heard last week that tehe cure with PegIntron, Ribovarin and Amantadine is not succesfull for me. Has no use to go on. sh.t. Is there somebody who knows of an other medication? Tinie,Back on the 3rd of Oct. you posted that you were in your 27th week of TX. After undergoing this all of that you say that you're just now finding out that the TX is not successful for you? My heart goes out to you over there in Holland. There is another way to look at this though, and that is your liver has had a long rest and a chance to heal itself. That, as I understand it is a real benefit, even if the TX did not manage to kill off all the virus. If you ever find an alternative TX that is successful, I'm sure it would bring joy and hope into many lives. In America alone there are between 3-4 million people infected with this virus. You are not alone. I'm only in my 11th week of TX, and sometimes I need to look real hard in order to reasons to continue on. The thing that does keep me going from day to day, is that I never know what joy or surprise is right around the corner that I just cannot see now. There is hope Tinie. God bless. John in Honolulu > I wonder if somebody knew about alternatief treatment. I have heard last > week that tehe cure with PegIntron, Ribovarin and Amantadine is not > succesfull for me. Has no use to go on. sh.t. > Is there somebody who knows of an other medication? Dear Tinie and Red Dwarf, I think that saying hope (the current treatment works) is the only answer discounts the information included about protease inhibitors and antisense therapies. Hello! Prolly a hashed-out post before I came here and confirmed that the Dragon is a royal bitch to beat with the meds we are using now. I am not discounting hope, and more power to Heppers who endure the treatment and come out alive, cured, or failed/quit. Three years ago Pegasys wasn't even around, now it's the Hep-C Chemo standard, complete with an endless list of side effects that plague almost every Hepper who is on it, regardless of genotype, and the cause of so many to quit poisoning themselves with a drug that can fail in 50% of genotype 1A's (48 weeks) to 'lucky' genotype 3A, 24 weeks with an 80% SVL='s undetectable 1 year post treatment. The 'cure' that has to be confirmed every year for life. Hope to me means that what's outlined below becomes available before the patient ends up at Level 4 fibrosis or cirrhosis/liver transplant category. So yes there are better cures on their way soon that will make Peg/Co-Peg look as aged as bleeding a patient for miasmas, and that's what I'm waiting for at Level 1 fibrosis. I'm a retired U.S. Army Medic who has done some homework on my disease. I'm not an expert in Internal Med, so Google search the companies and developments, as I'd rather you get the full story from those who are producing these non-Chemo approaches. Max Regards, Loner Several new approaches are being tried to fight the hepatitis C virus. One family of drugs called protease inhibitors; interfere with a virus’s ability to assemble itself into new viruses. Protese inhibitors have shown some success against the AIDS virus. Protese inhibitors are being developed for a specific virus and researchers are hopeful that one can be developed for the hepatitis C virus. Gene therapy is another promising science that is being researched and may be available soon. Gene therapy is a group of treatments whereby new DNA is placed into the patient’s tissues. One of these therapies is called antisense therapy. The approach of antisense therapy is to try to shut off bad genes such as those of a virus. In antisense therapy, the patient is given a man made copy of DNA that exactly matched to a gene that the virus needs to reproduce. The antisense DNA attaches to the viral gene and interferes with its workings so as to prevent it from surviving. Companies involved in development and final testing as of now: Maxim Pharmaceuticals Ribozyme Pharmaceuticals Inc. Isis Pharmaceuticals SciClone Pharmaceuticals International, LTD Vertex Pharmaceuticals Incorporated Human Genome Sciences, Inc. --- Outgoing mail is certified Virus Free. Loner, I don't know a protease inhibitor from a striptease. I'm not a genetic scientist nor a doctor. Like most others I must depend upon the expertise of my medical providers. I will say one thing though, and that is I never trusted the drug industry to be honest or to tell the truth to anyone. They are too beholden to their investors, and about qtrly profits to even think about honesty.It was not all that long ago that I remember the drug companies were rewarding doctors with trips and outings if they wrote so many prescriptions. Nowadays, they only hand out pens, pads, and the like of it. In an industry where peoples lives are at stake, we must rely upon the judgment of our physicians, and hope that judgment isn't swayed by trinkets. John > Dear Tinie and Red Dwarf, > I think that saying hope (the current treatment works) is the only answer [quoted text clipped - 26 lines] > Several new approaches are being tried to fight the hepatitis C virus. One > family of drugs called protease inhibitors; interfere with a virus?s ability > to assemble itself into new viruses. Protese inhibitors have shown some > success against the AIDS virus. Protese inhibitors are being developed for a > specific virus and researchers are hopeful that one can be developed for the > hepatitis C virus. Gene therapy is another promising science that is being > researched and may be available soon. Gene therapy is a group of treatments > whereby new DNA is placed into the patient?s tissues. One of these therapies > is called antisense therapy. The approach of antisense therapy is to try to > shut off bad genes such as those of a virus. In antisense therapy, the > patient is given a man made copy of DNA that exactly matched to a gene that > the virus needs to reproduce. The antisense DNA attaches to the viral gene > and interferes with its workings so as to prevent it from surviving. > Companies involved in development and final testing as of now: Dear John, I have read your posts, along with other 'regulars' who provide invaluable feedback to us Heppers. I compliment you and them for providing support to those who seek it. Do not stop doing what you and others do best. I do not fault you or anyone for being skeptical about providers and drug companies. Anyone who doesn't question them has never dealt with them. Mine is the V.A. and they are a tough bunch. I question many things and have a modicum of experience in the medical profession, 20 years as a 91Bravo, or 'Combat Medic'. And "No" I'm no rocket scientist either, but I can see what the next logical step is, and mark my words that you will probably see some of these products within a year. Money drives everything, and with Hep-C affecting 3+ million people (Vets being one of the highest demographic groups) c/o our shot-gun immunization techniques (abominations) that were finally stopped in the mid-1980's. We infected our own. It makes sense that budget strapped hospitals would opt for shorter, cheaper, and more effective 'cures' for this disease than the current protracted and expensive modality, that keeps Heppers bound to their homes, hospitals, or struggling to work or live infected. As I said on my last post, if you want to know what is coming, go find it like I did. I gave you the names of the companies who are the major players. There are many others I didn't even list! I have the latitude to wait for these products that don't kill the bug by incapacitating the patient for 24-48 weeks. I am lucky I guess. I did not come here with snake oil promises, just the facts that await anyone if they start looking and asking who, what, when, where, why and how; the six basic components of information gathering that doesn't take a PhD to at least follow, or stick with what's the standard now (Peg/Co-Peg) and hope that it works. It takes 10 years to 'graduate' from one level of fibrosis to the next. In 10 years untreated I'll be @ level 2 or cured (quickly and completly) by the gizmos that will be a definitive cure, oh crap I said 'cure', well hold on to your hat, that is an achievable and impending reality that may give hope to those who have had it with a Chemo regimen. I'll keep this NG informed when FDA approval is finished on some of those terms you should at least become familiar with if you want to stay current with what's next. Regards, Loner (91B40 Retired) BTW I got tons of kick-backs from eager drug reps in every Army E.R. I ever ran, so they were a welcome sight in my office anyday! They didn't go down range though and that's where I was for 75% of my career patching up Grunts and getting dirty needle sticks. --- Outgoing mail is certified Virus Free. >[...] mark my words that you will probably see some of >these products within a year. Sorry, but that's complete bullshit. IF any of those products really does work (and that's a BIG IF), it will be AT LEAST five years until they have gone through complete testing. None of the advanced treatments is anywhere close to actual clinical testing as a real treatment, all are at the phase 1 or 2 stages, where all that's being tested is that the few volunteers that get it don't drop dead, and that at least something liver-related happens. If your only information is the maker's web-sites, then they naturally are very convincing in their statements that the breakthrough is just around the corner. But from someone who states "I do not fault you or anyone for being skeptical about providers and drug companies. Anyone who doesn't question them has never dealt with them.", you seem overly gullible when it comes to promises made by companies struggling to get investors on board. >It takes 10 years to 'graduate' from one level of fibrosis to the >next. That, too, is nonsense. The speed of progression varies in every individual, and can take from 1 year to 50. There are people who become cirrhotic in less than 10 years from infection. Thomas  SignatureTo reach me, complete my last name in the address. Dear Thomas, These 'bullshit' products have being used successfully to slow HIV, and have been for years. DNA manipulation is not a new concept. They are out of trials and patents are pending for the Hep-C versions. Please do your homework before you compose your post. I hope for the sake of all HCV infected people that U will be surprised soon. Or kill-file me and U won't C my posts, or need 2 bother with a hostile reply. Loner --- Outgoing mail is certified Virus Free. > Dear Thomas, > These 'bullshit' products have being used successfully to slow HIV, [quoted text clipped - 5 lines] > Or kill-file me and U won't C my posts, or need 2 bother with a hostile > reply. I just want to thank you for the info and for your willingness to share it. I am glad to see that the hostility will not alter that. There is an old guard here that can get down right nasty about this stuff. The common theme is kill it with as many chemicals as you can load up on. Don't wait...do it now. The good news is most of us here have an open mind. I know my choices are just that..mine. What works for you may not work for me, that my situation is unique to me therefore my choices may not be the same as the next guys. I decided to go ahead and give the 24 week hell a shot (pun intended) even though I could have waited for something better. I did wait for 3 years after diagnosis until the combo therapy showed up increasing my odds and until I was in a better place emotionally. If I had been type 1 I probably would have continued to wait. The main reason I chose to start now was the trend towards less and less employer covered health care. Might be better and cheaper in two years but I might not have health coverage. Just wanted to say thanks and I'm glad you won't be dissuaded by the backlash of negativity. (most of which I don't see because I won't read their posts) AG Thank you Aqua Girl, Old guards abound on USENET and I never kow-tow to their over-inflated sense of importance. When they tit-4-tat it's time to hit the K/F button and save on downloading their posturing crap. I'm here and staying, so Old Guard knock off the egocentric, non Hep-C related B.S. and insults or I won't B reading anything you post. Like they care ;-} Regards, Loner --- Outgoing mail is certified Virus Free. In AF emergency rooms, the Shift Leader of the night crew would inventory the drugs on hand and check the expiration dates of each, then order from the pharmacy enough to replace drugs used during that day or those that were about to expire. In the morning, a pharmacy tech would deliver the drugs that were ordered. It was a simple as that. No kickbacks, no bullshit. Loner, you and AG can lick each other's a.s as long as you want but the FACTS remain the same. Both of you can eat sh.t! Elmo (of the old guard) http://community.webtv.net/elmoemerson/DocElmosHepFile Loner answered: > Thank you Aqua Girl, > Old guards abound on USENET and I never kow-tow [quoted text clipped - 7 lines] > > Loner <PLONK> > Loner answered: > > Thank you Aqua Girl, [quoted text clipped - 10 lines] > > <PLONK> I don't know Michael...filtering the only people who offer a different opinion and NEW information from others on here might not be in your best interest....but that's your call. Every time someone offers up an opinion different from a few of the "old timers" they get defensive and then down right cruel. I had to put several on filter just so I could continue to participate. It's hard enough dealing with nastiness under the best of circumstances and very few people in here are operating under good circumstances...much less "best". Like I said, your call...but I for one am glad to hear ALL the options..not just the ones the select few believe are worthwhile. AG Smiling Wickedly, Agua Girl answered: >>Loner answered: >> [quoted text clipped - 26 lines] > > AG Just YOU stick around Hon.. :-) jeez .. just woke up out of a sound sleep, and am wide awake. Took my Shot last night at 5:30, and now I'm SOAKING wet, Hotter than hell, and a little shakey. God ya gotta love this stuff.. Michael Michael, if it's any consolation to you, after i took my 11th shot on Tuesday, with mostly the same symptoms, I spent Wednesday in bed all day. It was only on Thursday before I could begin to roust myself. John > jeez .. just woke up out of a sound sleep, and am wide awake. Took my > Shot last night at 5:30, and now I'm SOAKING wet, Hotter than hell, and > a little shakey. God ya gotta love this stuff.. > > Michael Red Dwarf answered: > Michael, if it's any consolation to you, after i took my 11th shot on > Tuesday, with mostly the same symptoms, I spent Wednesday in bed all day. > It was only on Thursday before I could begin to roust myself. > John Glad you're Ok John. Finally got some more sleep since the last time I posted this morning. Just got up around 1/2 hour ago. All things considered, I know I could probably be feeling worse. BUT, I seem to be going through a real nauseous period this morning. Gotta get something more to eat. I ate a chocolate muffin this morning right after I woke, and Guzzled most of a 24 ounce bottle full of water. then took my morning Riba. I DO think I'm going to put a Red Dwarf DVD on and chuckle a bit. Take care, Michael > Red Dwarf answered: > > Michael, if it's any consolation to you, after i took my 11th shot on [quoted text clipped - 10 lines] > right after I woke, and Guzzled most of a 24 ounce bottle full of water. > then took my morning Riba. I took my 17th shot last night around 10:30pm and then went to bed; slept through the night with no problem. In fact, the shot didn't seem interfere with my current need for 10 hours of sleep a night. I ran out of Ambien two weeks ago, haven't felt the need for it. Right now the biggest problem for me seems to be mood. The initial benefit from the anti-d seems to be wearing off and now I'm just grumpy a lot. The low-dose magic brownie solution for the rage isn't working as well on my mood. I think I'm just feeling ground down, and after two good weeks I had a rougher one. I just need a few productive mornings to feel better, I think. Gordo Mondragon answered: > I took my 17th shot last night around 10:30pm and then went to bed; > slept through the night with no problem. In fact, the shot didn't seem [quoted text clipped - 9 lines] > rougher one. I just need a few productive mornings to feel better, I > think. Well I don't know. I've only been doing this for a couple of weeks, and maybe my system is stronger than others, But in a SMALL way, I've almost been wondering whats going wrong. Or maybe I built things up too much. Because, as uncomfortable as things ARE on TX, for some reason I thought they would be much worse. I mean, as crappy as I feel, I can DEFINITELY handle it, and continue working. Now this time for my 2nd shot , it was somewhat worse than the first. maybe they'll keep getting worse? I don't know. I'm sure that after I've been doing this for a little longer, my attitude will start being "I'M TIRED OF THIS sh.t" But for now... Sitting here now, watching Red Dwarf, trying to drink a starbucks. But I've got the cold sweats, alternating with just plain HOT and sweating. Take care Gordo. Michael > Gordo Mondragon answered: > [quoted text clipped - 15 lines] > maybe my system is stronger than others, But in a SMALL way, I've almost > been wondering whats going wrong. Or maybe I built things up too much. People's responses seem to vary wildly and vary over time. > Because, as uncomfortable as things ARE on TX, for some reason I thought > they would be much worse. I mean, as crappy as I feel, I can DEFINITELY > handle it, and continue working. I started off the first couple of weeks working, but my job is to deal with all the difficult stuff that other people can't make work. It just got overwhelming fast and I found myself on the edge of tears a lot. For what it's worth I started to know towards the end of the 2nd week that I was going to be having trouble working. I think I'm on the more-worse-off end of the side-effect range, though, so hopefully you'll continue to be on the better-off side. It's a good thing for people who aren't having that hard a time of it to post that and remind people that it's a possibility. > Now this time for my 2nd shot , it was somewhat worse than the first. > maybe they'll keep getting worse? I don't know. My 2nd shot was the worst in terms of "flu-like symptoms". Since then I've rarely had significant fevers, just sort of warm feeling. Don't even notice it anymore. > I'm sure that after I've been doing this for a little longer, my > attitude will start being "I'M TIRED OF THIS sh.t" But for now... Who knows? Hopefully not. I think the best advice someone can take from here is to do the most you can, but be prepared for changes. It's a lot easier to set up support, time off, etc, when you're feeling good. It's really hard to explain and sort out when you need to just retreat. > Sitting here now, watching Red Dwarf, trying to drink a starbucks. But > I've got the cold sweats, alternating with just plain HOT and sweating. I don't drink much coffee at all anymore. Made me feel worse. Before starting tx I was a two-mug-a-day coffee drinker. Weirdly enough, the tx has made me less sensitive to heat. I have always run a little warm and would sweat easily. I drink huge amounts of water now but don't sweat much and don't notice even when other people are saying "it's kinda warm in here". Michael, not all of my Pegintron injections were unpleasant. I think this last one hit me badly because I'm so damn weak, and exhausted from lack of sleep. That is my biggest problem now, lack of sleep. I do try to sleep, but what happens is that I just lie there trying to solve all of my problems in my head, making no progress, then feeling worse. Well, I knew this would be no picnic, that's why I refused TX for so long. But good golly, I didn't sign up for this :) I truly envy you people who have loved ones, and jobs, and all of those things that add a level of stability to your lives. I had all of that at one time also, then lost it all, quicker that I ever believed possible. John > Gordo Mondragon answered: > [quoted text clipped - 32 lines] > > Michael Red Dwarf answered: > Michael, not all of my Pegintron injections were unpleasant. I think this > last one hit me badly because I'm so damn weak, and exhausted from lack of [quoted text clipped - 7 lines] > time also, then lost it all, quicker that I ever believed possible. > John Hang in there John. We'll all be better some day. You're doing the right thing. We all have each others as loved ones in here. I can't possibly say enough about the support I have gotten here. More than from my wife. Mind you I love her, and I believe she me. But, I'm really getting tired of smart a.s comments about me doing this to myself when I say I'm feeling sick. > > I don't know Michael...filtering the only people who offer > > a different opinion and NEW information from others on [quoted text clipped - 12 lines] > > > Just YOU stick around Hon.. :-) I am :-). I did get all hurt once and unsubscribe but I know that's the meds talking. Mentally I am doing 100% better since going on disability. I do get occasional help from friends but mostly it's just me so it all just became a little overwhelming. I am not sure if I could get used to being home all day but I could sure get used to not having to work there <g>. > jeez .. just woke up out of a sound sleep, and am wide awake. Took my > Shot last night at 5:30, and now I'm SOAKING wet, Hotter than hell, and > a little shakey. God ya gotta love this stuff.. I HATE THAT. That's the part we are supposed to sleep through and it used to tick me off when my body wouldn't cooperate. :-). That's why I switched from straight Tylenol to some form of nighttime flu formula. That bad flu feeling did subside somewhat for me. Now it's more like a mild hangover. Hopefully it will do the same for you soon! AG Smiling Wickedly, Agua Girl answered: >>>I don't know Michael...filtering the only people who offer >>>a different opinion and NEW information from others on [quoted text clipped - 32 lines] > > AG Thanks AG.. hey Email me. I want to ask ya something... It's such a sad state - and this is all over - that the concept of "all opinions should be heard" has morphed into the assertion that all opinions are equally valid and shouldn't be challenged when they're clearly wrong. I also appreciate people who are honest about disagreeing. People who are as nasty as you've been who then post about how nasty other people are make my skin crawl. Gordo > > Loner answered: > > > Thank you Aqua Girl, [quoted text clipped - 25 lines] > > AG Re: What can I do now. Group: alt.support.hepatitis-c Date: Fri, Oct 15, 2004, 2:03pm (CDT-2) From: uknown@spamblock.net (Agua Girl) "Loner" <mauricesean@yahoo.com> wrote in message news:4170445f$1_4@127.0.0.1... Dear Thomas, These 'bullshit' products have being used successfully to slow HIV, and have been for years. DNA manipulation is not a new concept. They are out of trials and patents are pending for the Hep-C versions. Please do your homework before you compose your post. I hope for the sake of all HCV infected people that U will be surprised soon. Or kill-file me and U won't C my posts, or need 2 bother with a hostile reply. I just want to thank you for the info and for your willingness to share it. I am glad to see that the hostility will not alter that. There is an old guard here that can get down right nasty about this stuff. The common theme is kill it with as many chemicals as you can load up on. Don't wait...do it now. The good news is most of us here have an open mind. I know my choices are just that..mine. What works for you may not work for me, that my situation is unique to me therefore my choices may not be the same as the next guys. I decided to go ahead and give the 24 week hell a shot (pun intended) even though I could have waited for something better. I did wait for 3 years after diagnosis until the combo therapy showed up increasing my odds and until I was in a better place emotionally. If I had been type 1 I probably would have continued to wait. The main reason I chose to start now was the trend towards less and less employer covered health care. Might be better and cheaper in two years but I might not have health coverage. Just wanted to say thanks and I'm glad you won't be dissuaded by the backlash of negativity. (most of which I don't see because I won't read their posts) AG ////////// We get downright nasty about stuff because we know bullshit whenever we see it. And you're full of it too, AG. You can kiss my a.s! Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile >I just want to thank you for the info and for your willingness to share >it. You mean the info about new drugs in the pipeline that has been posted here repeatedly by others (including me)? Or the nonsense about protease inhibitors being available within a year? >I am glad to see that the hostility will not alter that. Correcting misinformation isn't hostility. >There is an >old guard here that can get down right nasty about this stuff. The >common theme is kill it with as many chemicals as you can load >up on. Don't wait...do it now. Nonsense. Since many (most?) here are on the current treatment, it makes sense to not diss that and make false promises about new stuff being just around the corner. If folks come here with questions whether they should go into treatment, I've several times explained that waiting IS an option for many, as long as their liver is OK and they're being checked frequently enough. But waiting is not an option for all, and posting outright falsehoods like "It takes 10 years to 'graduate' from one level of fibrosis to the next" is dangerous disinformation. Thomas SignatureTo reach me, complete my last name in the address. >Dear Thomas, >These 'bullshit' products have being used successfully to slow HIV, >and have been for years. DNA manipulation is not a new concept. >They are out of trials and patents are pending for the Hep-C versions. Please post proof. The information on which phase those meds are in is available on the respective manufacturer's web-sites if you actually care to look. I've posted info about a number of the meds you cite just a few weeks back, and NONE, repeat NONE, is even in, let alone past, phase 3 clinical testing. Only after successful completion of phase 3 can a med come on the market, and getting there takes years. >Please do your homework before you compose your post. I did. See my previous posts on the topic. Where's your homework? >I hope for the sake of all HCV infected people that U will be surprised >soon. I am hoping with you that I will be surprised. Unfortunately, hope doesn't cure Hep. >Or kill-file me and U won't C my posts, or need 2 bother with a hostile >reply. I certainly won't, because giving people false hope that might cause them to delay treatment is a disservice to all who come here looking for facts instead of fantasy. Thomas SignatureTo reach me, complete my last name in the address. I agree with Thom on this. I went from mild fibrosis (? what stage it was, but the doc at the time said my liver was fine) to stage 3 liver disease in 3 years. Or they screwed up the first biopsy and it was wrong. Had a different doc for the second one. original messages; (It takes 10 years to 'graduate' from one level of fibrosis to the next. ) That, too, is nonsense. The speed of progression varies in every individual, and can take from 1 year to 50. There are people who become cirrhotic in less than 10 years from infection. Thomas >I agree with Thom on this. >I went from mild fibrosis (? what stage it was, but the doc at the time [quoted text clipped - 10 lines] >cirrhotic in less than 10 years from infection. >Thomas So true. You can't reliably predict the speed of progression. There is no reliable template. But you can take your chances and rationalize to support your decision. On Fri, 15 Oct 2004 19:19:03 -0500, Spring-P413@webtv.net, in message ID <29061-417068F7-600@storefull-3234.bay.webtv.net>, in the newsgroup alt.support.hepatitis-c wrote: >I agree with Thom on this. >I went from mild fibrosis (? what stage it was, but the doc at the time [quoted text clipped - 10 lines] >cirrhotic in less than 10 years from infection. >Thomas The rate of progress certainly is erratic. I don't know for sure how long I had hep-c but it was almost certainly 17 - 29 years. I was quite a way into stage 2 at biopsy. Someone else I know got to stage 2 in 3 years. The other person got hep-c from tranfusion and was given 50 units and was lucky to live. I probably got mine from a speck of blood out of a used needle. It causes me to wonder if it usually progresses faster in people who have received it in quantity. SignaturePaul Use the reply by email facility in your newsreader to send email > The rate of progress certainly is erratic. I don't know for sure how > long I had hep-c but it was almost certainly 17 - 29 years. I was [quoted text clipped - 4 lines] > causes me to wonder if it usually progresses faster in people who have > received it in quantity. The only time I can think of that I was at risk (no needles prior to tx) was in 1978 when I received a lot of blood following a motorcycle accident. I was at 0..no cirrhosis, no fibrosis 24 years later. Go figure. Odd thing is I was kept in the hospital a few days longer than they expected because they couldn't bring my fever down. Now I wonder if it wasn't my body reacting to the virus. AG On Fri, 15 Oct 2004 20:58:52 -0700, "Agua Girl" <uknown@spamblock.net>, in message ID <MJednVgEd8o4JO3cRVn-sQ@adelphia.com>, in the newsgroup alt.support.hepatitis-c wrote: >> The rate of progress certainly is erratic. I don't know for sure how >> long I had hep-c but it was almost certainly 17 - 29 years. I was [quoted text clipped - 4 lines] >> causes me to wonder if it usually progresses faster in people who have >> received it in quantity. >The only time I can think of that I was at risk (no needles prior >to tx) was in 1978 when I received a lot of blood following >a motorcycle accident. I was at 0..no cirrhosis, no fibrosis >24 years later. Go figure. That appears to refute my theory then :-) Really, such things can only be determined with a largish sample of people anyway. SignaturePaul Use the reply by email facility in your newsreader to send email > On Fri, 15 Oct 2004 20:58:52 -0700, "Agua Girl" > <uknown@spamblock.net>, in message ID [quoted text clipped - 18 lines] > Really, such things can only be determined with a largish sample of > people anyway. True, and there are so many variables that any conclusions would still have a huge window of accuracy. Since a few people seem to be able to clear the virus before it becomes chronic than it isn't inconceivable to believe that some people are genetically prone to "fight it off" a little more. Than of course there are all the other things we do to tax our livers like drinking, poor nutrition, even the quality of the water we drink. And of course even if you could account for all these different variables and make them part of some sort of algorithm to determine rate of progression....you still have the problem of knowing exactly when you were infected. My doctor and I believe it was that blood transfusion...seems to be logical...but I don't know for sure. Maybe that blood was fine and I got it though a bad dentist or sharing a coke straw. I imagine the only way to accurately predict progression is to get a biopsy every year. yech. AG It took me *30* years to get to Stage 2, and then I went from Stage 2 to 4 in under 3 years. That "ten years" thing is a crock. I agree with Thom on this. I went from mild fibrosis (? what stage it was, but the doc at the time said my liver was fine) to stage 3 liver disease in 3 years. Or they screwed up the first biopsy and it was wrong. Had a different doc for the second one. original messages; (It takes 10 years to 'graduate' from one level of fibrosis to the next. ) That, too, is nonsense. The speed of progression varies in every individual, and can take from 1 year to 50. There are people who become cirrhotic in less than 10 years from infection. Thomas ------------------------------------------------------------------------------ Joshua Paul Cope July 25, 1979 - August 12, 2000 JOURNAL of grief E TO HEAVEN MY TESTIMONY ahahahahahahaha You ARE indeed full of crap, Loner. Drug reps NEVER appear in Army emergency rooms trying to peddle their wares. Mickey Mouse had more input than you as to what drugs the military procures for it's ER's. Quit deluding yourself and lying to the nice people here. Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile Then I guess you never ran a military E.R. Elmo. Drug Reps were as common as the patients. I ordered my Class 1-9 supplies through the GSA in TDA (MEDDAC's & MEDCEN's) fixed facilities, and DMSO in TO&E (field) units. The only way to go except for LPO's which did not include drugs. Too many acronyms for you sonny? You are the joke here Elmo for posting non Hep-C military G2 without a clue. Out, Loner --- Outgoing mail is certified Virus Free. Wrongo, Bonzo! Except that I was Air Force and not Army. I ordered meds to stock the ER, but only those that were approved by the GSA and were in our pharmacy. None of us ever dealt with drug reps......getting kickbacks would have been a Court Martial offense, if kickbacks had even been possible, which they were NOT. I'm not impressed with your bandying about with acronyms either, a.shole. I don't believe a word you say. Elmo ////////////// Then I guess you never ran a military E.R. Elmo. Drug Reps were as common as the patients. I ordered my Class 1-9 supplies through the GSA in TDA (MEDDAC's & MEDCEN's) fixed facilities, and DMSO in TO&E (field) units. The only way to go except for LPO's which did not include drugs. Too many acronyms for you sonny? You are the joke here Elmo for posting non Hep-C military G2 without a clue. Out, Loner --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.778 / Virus Database: 525 - Release Date: 10/15/04 ----== Posted via Newsfeeds.Com - Unlimited-Uncensored-Secure Usenet News==---- http://www.newsfeeds.com The #1 Newsgroup Service in the World! >100,000 Newsgroups ---= East/West-Coast Server Farms - Total Privacy via Encryption =--- http://community.webtv.net/elmoemerson/DocElmosHepFile Air Farce w.nkers do things differently than any other service. U have your system, we had ours. Mine worked. This has nothing to do with Hep-C anymore, but if all U want to do is posture, then knock yourself stupid self out and amuse the NG with your importance. And I consider it a compliment to be called an 'a.shole' from someone who joined the 'get-over' branch of our military. U are not worthy of another reply from any ground pounder. Good bye Elmo, Loner --- Outgoing mail is certified Virus Free. Air Force w.nkers order drugs for their emergency rooms the same way ground pounders do, stupid. It's obvious to me that the only drugs you've ever ordered were the ones you've taken to delude yourself. I'm no more 'important' than anyone else, a.shole, I'm just not a liar like you. I doubt you ever served in the military, much less, the Army. Most Army folk I know appreciate the Air Force. Elmo /////////////// Air Farce w.nkers do things differently than any other service. U have your system, we had ours. Mine worked. This has nothing to do with Hep-C anymore, but if all U want to do is posture, then knock yourself stupid self out and amuse the NG with your importance. And I consider it a compliment to be called an 'a.shole' from someone who joined the 'get-over' branch of our military. U are not worthy of another reply from any ground pounder. Good bye Elmo, Loner --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.778 / Virus Database: 525 - Release Date: 10/15/04 ----== Posted via Newsfeeds.Com - Unlimited-Uncensored-Secure Usenet News==---- http://www.newsfeeds.com The #1 Newsgroup Service in the World! >100,000 Newsgroups ---= East/West-Coast Server Farms - Total Privacy via Encryption =--- http://community.webtv.net/elmoemerson/DocElmosHepFile Loner - The stats for treatment for people newly infected are much different than for chronic cases. Also for people dually infected with HIV and HCV. I'm glad for you that you are able to postpone treatment. For some of us, there was no such option. Gordo. > Dear John, > I have read your posts, along with other 'regulars' who provide invaluable [quoted text clipped - 51 lines] > Newsgroups > ---= East/West-Coast Server Farms - Total Privacy via Encryption =--- > Dear Tinie and Red Dwarf, > I think that saying hope (the current treatment works) is the only answer [quoted text clipped - 27 lines] > > Loner Congratulations for only being at level I fibrosis and having time to wait. I waited for 10 years for something better. Meanwhile, I kept getting sicker and sicker to the point where the virus affected the quality of my life and I don't have much of a life now. Some of us can't wait for another ten years. It is a matter of how urgent things are. Is there time to wait. The treatment is more successful now then it was 10 years ago. For someone that wants to get rid of the virus now, this is about the only choice. Susie > Several new approaches are being tried to fight the hepatitis C virus. One > family of drugs called protease inhibitors; interfere with a virus?s [quoted text clipped - 24 lines] > Vertex Pharmaceuticals Incorporated > Human Genome Sciences, Inc. No wonder they call you Loner, Loner. They should call you Bonehead, instead. Not only are your insinuations untrue, the facts as you state them are bullshit. You should be beaten about the face and head for coming into a support group and spreading your sh.t to a bunch of people who need encouragement, not the stuff you're spewing. By the way, the Army needs you again. Why don't you rejoin and volunteer to be used for target practice. Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile > Dear Tinie and Red Dwarf, > I think that saying hope (the current treatment works) is the only answer [quoted text clipped - 8 lines] > to quit poisoning themselves with a drug that can fail in 50% of genotype > 1A's WRONG. Pegifn/riba currently gets a 62%-68% SVR rate for geno 1. Your math is off. (48 weeks) to 'lucky' genotype 3A, 24 weeks with an 80% SVL='s > undetectable 1 year post treatment. The 'cure' that has to be confirmed > every year for life. Only if you're one of those needy types that demands constant positive reinforcement. Statistically, if one has an SVR one year after completing tx, there's less than a 2% chance that it will ever return. At that, it's unknown whether the virus actually returns or if the patient has become reinfected. > Hope to me means that what's outlined below becomes available before the > patient ends up at Level 4 fibrosis or cirrhosis/liver transplant category. > So yes there are better cures on their way soon that will make Peg/Co-Peg > look as aged as bleeding a patient for miasmas, and that's what I'm waiting > for at Level 1 fibrosis. Dream on. Better cures are NOT on their way SOON. Your level 1 can be level 3 in a couple of years, and it will be at least five years before a "better cure" is available. > I'm a retired U.S. Army Medic who has done some homework on my disease. Obviously not enough research. > I'm not an expert in Internal Med, so Google search the companies and > developments, > as I'd rather you get the full story from those who are producing these > non-Chemo approaches. There are no "non-chemo" treatments capable of killing HCV. None. Nada. The protease inhibitors you refer to below show promise only when used in combination with standard tx, peg-inf & riba. Optimism is a good thing, but don't let it blind you. Waterspider > Max Regards, > > Loner > > Several new approaches are being tried to fight the hepatitis C virus. One > family of drugs called protease inhibitors; interfere with a virus?s ability > to assemble itself into new viruses. Protese inhibitors have shown some > success against the AIDS virus. Protese inhibitors are being developed for a > specific virus and researchers are hopeful that one can be developed for the > hepatitis C virus. Gene therapy is another promising science that is being > researched and may be available soon. Gene therapy is a group of treatments > whereby new DNA is placed into the patient?s tissues. One of these therapies > is called antisense therapy. The approach of antisense therapy is to try to > shut off bad genes such as those of a virus. In antisense therapy, the [quoted text clipped - 19 lines] > http://www.newsfeeds.com The #1 Newsgroup Service in the World! >100,000 Newsgroups > ---= East/West-Coast Server Farms - Total Privacy via Encryption =--- Depending on your circumstances, you might find daily Infergen and Ribabirin would be beneficial. Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile >I wonder if somebody knew about alternatief treatment. I have heard last >week that tehe cure with PegIntron, Ribovarin and Amantadine is not >succesfull for me. Has no use to go on. sh.t. >Is there somebody who knows of an other medication? If peg/riba didn't work for me I'd be considering infergen/riba against possibly waiting for a while. If I decided to wait I might try milk thistle to help protect my liver. So sorry tx didn't work for you. I know it must be a terrible disappointment. This disease is very hard to defeat. I hope your next round is successful. Don >I wonder if somebody knew about alternatief treatment. I have heard last >week that tehe cure with PegIntron, Ribovarin and Amantadine is not >succesfull for me. Has no use to go on. sh.t. >Is there somebody who knows of an other medication? The only "alternative" is even worse than what you just went through - daily Infergen plus Ribavirin. No guarantee there, either. What state is your liver in - do you have time to wait a few years? Thomas SignatureTo reach me, complete my last name in the address. I think that some of us may have lost sight what the original poster,(Tinie Ghissen) was dealing with. Like so many of us, this individual was and probably still is, in emotional distress, and I believe needed comforting. I regret that I may have started such a vitriolic thread with my distrust of the drug companies.It was just my opinion, and should not be given any more weight than anybody else's. I truly wish that there is a "cure" waiting just around the corner, but I do NOT believe that is the case.In any event, some of us(me) are unable to wait around for another treatment to be developed. In my case I've had chronic HCV for many years, and was running out of time.My health was and is deteriorating rapidly, and for me this was my only hope. I do not think I deserve to die such an unpleasant death as with cirrhosis. I still have not quite figured out how I was infected, although there a number of possibilities, including some poor choices I made in my youth.One thing I do resent is, being inflicted with false hope, for whatever reason. This has happened to me and perhaps some of you a number of times. Each time I have been fed some of this "false hope"in whatever area, not just HCV treatment, there has been usually been someone with a vested interest or hidden agenda involved. Do not misunderstand me please, I'm not implying that this applies to anyone here in this n/g, that is just one of my life experiences. This happened to me just recently, I had reached out for help, in this case a social worker, and I was given this false hope, and sure enough, what I was promised simply vanished up in smoke. When folks like me are on this TX and are as desperate as I am, any such disappointments are magnified, or amplified, and can be particularly hard to recover from. This is one of the sources of my skepticism and mistrust. Make no mistake, I do so wish there were viable alternatives in treating HCV, and those of you who have been here for a while and may have read my earlier posts know this as fact. There is a word originally derived from Latin, that word is "est" which is the Latin verb to be. It means simply that what is, is. I for one am having a particularly hard time now, both with this TX and in general making my life work, and have had a number of bad breaks. What I'm getting at, is that I do not have the physical or emotional strength to deal with controversies, such as we have recently experienced here. I'm not pointing fingers here, just stating a fact. John in Honolulu > >I wonder if somebody knew about alternatief treatment. I have heard last > >week that tehe cure with PegIntron, Ribovarin and Amantadine is not [quoted text clipped - 6 lines] > > Thomas >I think that some of us may have lost sight what the original poster,(Tinie >Ghissen) was dealing with. Like so many of us, this individual was and >probably still is, in emotional distress, and I believe needed comforting. Yes, it's unfortunate that this fell through the cracks, and if Tinie hasn't fled the scene in disgust, maybe she could try again, and give us a bit more background about the state of her liver, so we can all look at what the possibilities are. If her liver is fine, waiting may be the best option, if it's severely damaged, she may need to try Infergen. Can't give a reasoned opinion (which can't replace a good talk with a real specialist anyway) unless we know more. >I regret that I may have started such a vitriolic thread with my distrust of >the drug companies.It was just my opinion, and should not be given any more >weight than anybody else's. I don't think any of us really "trusts" the pharma industry. We know they're in it for the money, and only the money. Their CEO's would sell their grandmothers for parts if they could. But to make that money, they actually have to produce positive results for us, they can't maintain an industry on smoke and mirrors alone (the supplement industry is pretty successful in that area, but that's a different can of worms). The meds ARE working for more and more people, resulting in HCV being the only chronic viral disease that is cureable NOW (all others, including HIV, can only be suppressed, not cured, even with protease inhibitors). >I truly wish that there is a "cure" waiting just >around the corner, but I do NOT believe that is the case. Exactly. It's a gross and hateful distortion to claim that any of us "old guard" members does anything but hope for better meds to come along soon. We just aren't wearing blinders, and we have indeed done our homework and looked more thoroughly into the matter than just reading breathless press releases by companies looking for investors. >In any event, some >of us(me) are unable to wait around for another treatment to be developed. And it's not just a question of being unable to wait, many of us (including me) do not want to wait. The wonder drug that cures HCV with almost no sides in no time has been promised to be ready in five years since 1990. It still isn't here, and still is about 5 years away. Progress is being made, and there is good reason to hope that this time it won't be an empty promise. But a number of the much hyped drugs like BILN 2061, which had a lot of people hoping for a quick cure two years ago, have quietly disappeared because lab animals died when treated with it, or because they simply didn't produce the expected results when they were tested on humans instead of petri dishes. Unfortunately, money can't force results. The amount of money being poured into HIV research is orders of magnitude higher than what's invested in HCV research, but there still is no cure. We have to live with what's here today. Wishing doesn't cure Hep. Peg-Interferon at least gives people a 50/50 (or better) chance. Thomas SignatureTo reach me, complete my last name in the address. Hallo TG, Sorry to hear the bad news. Hope you still have reserves and to wait until something new comes up on the market. I am also in Holland - my specialist is in the VU - Amsterdam. Where were you treated? CB > I wonder if somebody knew about alternatief treatment. I have heard last > week that tehe cure with PegIntron, Ribovarin and Amantadine is not > succesfull for me. Has no use to go on. sh.t. > Is there somebody who knows of an other medication? |
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