Aa
just ran across this 1b's
http://www.hepcuk.info/content/news/story.asp?nid=1&sid=215
Hi All.
I'm a newbi who is looking to get intouch with another poster here: NYGIRL. I've seen she's posted here so I'm getting closer. I am trying to start TX and I also take suboxone as well. Before I start tx I want to speak with someone who is in TX and also takes suboxone. I heard NYGIRL is in the same boat as I am so hence my post. Please give me a shout or anyone who knows her give her my e-mail ...***@****...
Thanks
Pauly Boy
I'm a newbi who is looking to get intouch with another poster here: NYGIRL. I've seen she's posted here so I'm getting closer. I am trying to start TX and I also take suboxone as well. Before I start tx I want to speak with someone who is in TX and also takes suboxone. I heard NYGIRL is in the same boat as I am so hence my post. Please give me a shout or anyone who knows her give her my e-mail ...***@****...
Thanks
Pauly Boy
yeah, I've been a researcher by profession, and when I got diagnosed with this little nasty, I thought I'd find out everything there was to know about it, scientifically and anecdotally...so I went on to several chat groups and I ended up making friends with various people around the country and europe even...
I figured if I could help them while they were treating on the phone or email, they would help me when my time comes...sometimes doing good is soooo selfish! ha ha! Also, I found out a whole lot of worthwhile info, at least to me...but I'm glad I did, I've met some really good people with different takes on this disease...Kalio was so right, along with Califia, when they said alright already, you now know enough, either put up or shut up! ha ha! course they were a bit more tactful...
I guess it makes sense that people gravitate to sites where they have a lot in common with the other members in terms of how they handle HCV and lifestyle issues...
I know I get a lot of "eye-rolling" when I talk about health, diet, etc on this site...and I feel sorry for poor Rocker cause he gets it too, along with some others...I just wanna say Rocker...that me and you on this Yahoo-group Hep C site...JOVO...we would be the Kieth Richards and Judy Garland of the bunch, these people take their HEALTH SERIOUSLY!!! ha ha! and they are not against traditional treatment, they are just a whole lot into diet, supplementation, etc as well...they have a lot of non-responders and relapsers too so they dont want to play around...
anyway, gotta go eat my tofuturkey, see ya soon!
I figured if I could help them while they were treating on the phone or email, they would help me when my time comes...sometimes doing good is soooo selfish! ha ha! Also, I found out a whole lot of worthwhile info, at least to me...but I'm glad I did, I've met some really good people with different takes on this disease...Kalio was so right, along with Califia, when they said alright already, you now know enough, either put up or shut up! ha ha! course they were a bit more tactful...
I guess it makes sense that people gravitate to sites where they have a lot in common with the other members in terms of how they handle HCV and lifestyle issues...
I know I get a lot of "eye-rolling" when I talk about health, diet, etc on this site...and I feel sorry for poor Rocker cause he gets it too, along with some others...I just wanna say Rocker...that me and you on this Yahoo-group Hep C site...JOVO...we would be the Kieth Richards and Judy Garland of the bunch, these people take their HEALTH SERIOUSLY!!! ha ha! and they are not against traditional treatment, they are just a whole lot into diet, supplementation, etc as well...they have a lot of non-responders and relapsers too so they dont want to play around...
anyway, gotta go eat my tofuturkey, see ya soon!
!!! Glad you made it man. 1 year is the gold standard, but you are on your way. Even humbled in your politics? There is hope for us all. Hope Katrina and Wilma spared you. Good going.
and amerabrit seems to have gone on with her hcv free life as well. I think she had a recent infection, so it was easier to erradicate. I'll check and see if her addy is still good.
take care, Summer is almost here!
take care, Summer is almost here!
Well, Snook is still hanging in there!! I just got my 6 month post tx PCR, and I'm still undetectable!! Doc seems to think I got it licked! My ALT's are even down to 19, and overall, I'm feeling pretty good. I have even humbled myself in regards to politics..
I wish I could pass my good furtune on to you, as it seems the tx road sure is unpredictable and just down right unforgiving! But hey, your liver is in good shape and you bought some time, you just have to keep an eye on it.
You should look into the Fibroscan test. There is a trial up by you, at Harvard. Dr Afdal is administering it. It's a nonivasive ultrasound type procedure that measures liver stiffness. I had it done down here, and my readings where very low. Stage 1 at the most, and that was while still on tx.
I wish you the best man!!!
I wish I could pass my good furtune on to you, as it seems the tx road sure is unpredictable and just down right unforgiving! But hey, your liver is in good shape and you bought some time, you just have to keep an eye on it.
You should look into the Fibroscan test. There is a trial up by you, at Harvard. Dr Afdal is administering it. It's a nonivasive ultrasound type procedure that measures liver stiffness. I had it done down here, and my readings where very low. Stage 1 at the most, and that was while still on tx.
I wish you the best man!!!
<i>...have a friend in AZ who did 48 weeks</I>
Sister, where DON'T you have friend with Hep C? Man, I guess gotta get out more.
Take care kiddo. We don't hear from you enough.
Sister, where DON'T you have friend with Hep C? Man, I guess gotta get out more.
Take care kiddo. We don't hear from you enough.
hi, this is just anecdotal to be sure, but I thought you might be interested anyway...have a friend in AZ who did 48 weeks, relapsed a month after finishing....really compliant, etc. etc. Anyway, I had been following him because he was a bit unusual in his presentation of symptoms... he had low liver damage, low viral load yet he had symptoms.... he had "flare ups" that lasted a few months then would go away for about 6 months...
Anyway, it's been 10 months since he finished, and he still feels better then before his treatment without those pesky "flare ups." He's very grateful for it even though he didn't clear...it's not talked about much but it is interesting that some people can still feel better having done treatment, even though they didn't clear...there are those as well as the people who have the long term side effects....hope youre well and thriving...
Anyway, it's been 10 months since he finished, and he still feels better then before his treatment without those pesky "flare ups." He's very grateful for it even though he didn't clear...it's not talked about much but it is interesting that some people can still feel better having done treatment, even though they didn't clear...there are those as well as the people who have the long term side effects....hope youre well and thriving...
1b is the very toughest geno/subtype that exists. The most popular theory is that for some reason it produces a larger quantity of quasi-species (mutations) making it more difficult to fight.
PK
PK
what a pleasant surprise! I have been thinking about you and how you are doing these days. I am glad you are well! Are you still keeping up the site?
There might not be Anime Boston this April for us, since May will find us in Louisiana, but if we do go for the day....I'll see.
I am happy to see you! stay well.
There might not be Anime Boston this April for us, since May will find us in Louisiana, but if we do go for the day....I'll see.
I am happy to see you! stay well.
Hello all. Thanks for the thoughts. Glad to see you're still out there. I check in from time to time. Anyone know how Harleydude, Snookman, Bernadette, et al are doing?
Hey Don, it's nice to see you again. I'm happy that you're feeling good and are looking forward to a long and joyful life. All the best to you, Mike
;-( Thanks!
I washed my car yesterday (well the car wash did LOL) because the weather report was for clear and cold all week and then it SNOWED on it last night. All the way from the Great Lakes the lake effect snow drifted down to NYC area.
I've had it, had it, had it and yet you are going to be in the 70s tomorrow? AHHHHHH! ;-)
Just wanted to bust your chops and say hi. :)
I washed my car yesterday (well the car wash did LOL) because the weather report was for clear and cold all week and then it SNOWED on it last night. All the way from the Great Lakes the lake effect snow drifted down to NYC area.
I've had it, had it, had it and yet you are going to be in the 70s tomorrow? AHHHHHH! ;-)
Just wanted to bust your chops and say hi. :)
Oh, and no fatty liver.
And as far as memory goes, I got back to about 80% symptom free within a month or so. I make my living with words and not being able to remember the right word or name is a real problem. Of course, none of my friends understand--in our 50's, we're all forgetting more. As you probably know, this is different because you know what's causing it and can remember what it was like before.
And as far as memory goes, I got back to about 80% symptom free within a month or so. I make my living with words and not being able to remember the right word or name is a real problem. Of course, none of my friends understand--in our 50's, we're all forgetting more. As you probably know, this is different because you know what's causing it and can remember what it was like before.
To take the questions as asked--
No symptoms of HepC that I can tell. I used to feel flu-ish around 4-5 PM, but not these days.
No vl tests since I am not treating. They are expensive and the drs and I don't see the point. I'll biopsy every 2-3 years while I wait. It was 48,000 at the post-3 month test.
I cleared at 12 and 24 weeks according to the tests. My liver status seemed to improve. (I was a 1 - 2 according the dr who probably didn't want to call it a 2.) I missed no shots and 1 dose of riba in 48 weeks.
Started tx 10/03, finished 9/04. Took about a year for my memory to return, physical symptoms started to clear almost immediately after I finished. I had a fairly easy ride regarding side effects--I worked almost every day, lost 20 lbs, got anemic (procrit--it's the miracle drug), and suffered daily bouts of riba rage and memory loss. I'll tell you that the day the PA told me it was back pretty much sucked, but life goes on. Aside from no alcohol and adding some vitamins and supplements, I haven't made any real changes in my life-style. I take courage from a quote I read somewhere: "The majority of HepC patients will die of something else." I'm planning on old age.
No symptoms of HepC that I can tell. I used to feel flu-ish around 4-5 PM, but not these days.
No vl tests since I am not treating. They are expensive and the drs and I don't see the point. I'll biopsy every 2-3 years while I wait. It was 48,000 at the post-3 month test.
I cleared at 12 and 24 weeks according to the tests. My liver status seemed to improve. (I was a 1 - 2 according the dr who probably didn't want to call it a 2.) I missed no shots and 1 dose of riba in 48 weeks.
Started tx 10/03, finished 9/04. Took about a year for my memory to return, physical symptoms started to clear almost immediately after I finished. I had a fairly easy ride regarding side effects--I worked almost every day, lost 20 lbs, got anemic (procrit--it's the miracle drug), and suffered daily bouts of riba rage and memory loss. I'll tell you that the day the PA told me it was back pretty much sucked, but life goes on. Aside from no alcohol and adding some vitamins and supplements, I haven't made any real changes in my life-style. I take courage from a quote I read somewhere: "The majority of HepC patients will die of something else." I'm planning on old age.
Doni, if you don't mind, post what week you cleared and your stage/grade when you started treating. Inquiring minds want to know! I have been 100% compliant with meds and would really dread having to do this again.
Rocker, went and bought the apple cider vinegar....can I say "uck!" but I am going to try it in the morning with a little honey. From what I read on website you linked to, 2 TB twice a day, diluted in water. Is this what you do?
Rocker, went and bought the apple cider vinegar....can I say "uck!" but I am going to try it in the morning with a little honey. From what I read on website you linked to, 2 TB twice a day, diluted in water. Is this what you do?
Also,seems v important to have RVR:that is 'undetected' by week-4.....I went from 6,000,000 to 1280 by 4th week;then tested undetectible at week-12....I wish i only had 6 more weeks!..DONL-when did you 1st clear? tough ride for 48 weeks ,then the stinking dragon spawn arises..Did you gain liver function?--Goodluck
I am a 1B, low viral load (143,000 at start) did 48 weeks of Pegasys/Riba and relapsed after 3 months. A number of others here went over 48 weeks (up to 72 weeks!)--some relapsed, some didn't. There's always the nagging feeling that if I had gone just 4 more weeks... I don't know why some people clear and some don't, but I suspect that it is deep in the makeup of their particular virual strain. (My doctors-had 2-both told me I was a "poster child for compliance" during tx.)
Anyway, good luck all. I expect to treat again, but I am waiting for better odds.
Anyway, good luck all. I expect to treat again, but I am waiting for better odds.
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