Aa
One year PCR - AFTER six month TEST
Lord God help me.
Recap - I had my six month test which came back with a false positive of 60 iu at the beginning of month 7 (I was afraid and put it off a few weeks). Doc said that isn't right wait one month come back it will be negative - after this long you couldnt have a number that low. So I went back at month 7 and and had the test and it came back negative at the beginning of month 8. This was October, 2007.
So I called today to make my one year pcr test bloodwork go to the lab for me.........and the NP called back and said the doc said said no you don't need a test until October.
I asked the NP to please go back and check...that technically even though it was month 7/8 it was really only my six month test because it was a "do-over".
She called back and he says that no longer do they find it necessary to do a year IF the person is neg at six months - the next test is not until October. (Year and a half)
Well..............I just have never heard of such a thing. He said you are SVR be happy and let it go after 72 weeks of treatment and all this time you are fine.
Does anybody agree with this? Ever heard it?
Honestly I'm sort of relieved BUT I'm sort of annoyed. After the false pos and all I'd like this checked again just for peace of mind. He says no it's not necessary.
Is this to say now that we DO take the SIX month test as the biggie and then only check yearly after that (even though I got my results at 8 months so I guess my tests are so F'd up it really doesn't matter)
As you know I have no problem calling him back and telling him he's wrong but he seems convinced that after this much time (neg at somewhere after 12) it's a moot point.
Is that true?
Help!!!!!!!!
Debby
Recap - I had my six month test which came back with a false positive of 60 iu at the beginning of month 7 (I was afraid and put it off a few weeks). Doc said that isn't right wait one month come back it will be negative - after this long you couldnt have a number that low. So I went back at month 7 and and had the test and it came back negative at the beginning of month 8. This was October, 2007.
So I called today to make my one year pcr test bloodwork go to the lab for me.........and the NP called back and said the doc said said no you don't need a test until October.
I asked the NP to please go back and check...that technically even though it was month 7/8 it was really only my six month test because it was a "do-over".
She called back and he says that no longer do they find it necessary to do a year IF the person is neg at six months - the next test is not until October. (Year and a half)
Well..............I just have never heard of such a thing. He said you are SVR be happy and let it go after 72 weeks of treatment and all this time you are fine.
Does anybody agree with this? Ever heard it?
Honestly I'm sort of relieved BUT I'm sort of annoyed. After the false pos and all I'd like this checked again just for peace of mind. He says no it's not necessary.
Is this to say now that we DO take the SIX month test as the biggie and then only check yearly after that (even though I got my results at 8 months so I guess my tests are so F'd up it really doesn't matter)
As you know I have no problem calling him back and telling him he's wrong but he seems convinced that after this much time (neg at somewhere after 12) it's a moot point.
Is that true?
Help!!!!!!!!
Debby
I meant to say when, not if. That other thing was just some bizarro error. Hell, I had a 13.9 hemaglobin reading a couple of weeks ago when it was REALLY an 8.1
Labs make mistakes all the time.
Labs make mistakes all the time.
FlGuy - That's the funniest thing I've ever read.
NYGirl - I'm at least as neurotic as you are. I'd be worried about it for the next six damn months. So I'd say, yo doc, I'm paying for the bloody thing last time I checked, give me the test. And if it comes out negative, say a hail mary and send a few lottery tickets to FlGuy.
NYGirl - I'm at least as neurotic as you are. I'd be worried about it for the next six damn months. So I'd say, yo doc, I'm paying for the bloody thing last time I checked, give me the test. And if it comes out negative, say a hail mary and send a few lottery tickets to FlGuy.
Congratulations! So glad to hear you are doing well. If you are worried that curcumin needs to be stopped for your surgery,you could just stop it a week or so prior. cataract surgery is amazingly efficient nowadays.
Best of luck with it
take care
Best of luck with it
take care
I always like taking out the best parts of posts " 7 month PCR was negative ....I feel extremely well ....It sure feels like it ".
That's great stuff Scuba and always nice to see you.
That's great stuff Scuba and always nice to see you.
Oh my God...This the MH big leagues!!! :-)
Legends are posting in this thread so I had to jump in and say hello to all of you from Spain, Hola Deb, Jim, Kalio, FLGuys, etc, etc
I'd like to keep you posted about my status here...My 7 month PCR was negative and I have to go next week for another blood panel and a FS...I feel extremely well and I'm taking curcumine, resveratrol and lots of green tea... My LFT's been always between 35 and 40 EOT (wereas in the 90s prior to tx)...But I don't know how they're gonna be after taking curcumin. My URQ has dissapeared and I do hope the good ol liver is regenerating fast. It sure feels like it
Anybody knows for how long should I be taking Curcumin & resveratrol after EOT (and supposing my enzymes are in the the teens next week) because I'm gonna have a cataract operation in may...Would curcumine affect healing?
Muchos saludos y abrazos desde madrid
scuba
Legends are posting in this thread so I had to jump in and say hello to all of you from Spain, Hola Deb, Jim, Kalio, FLGuys, etc, etc
I'd like to keep you posted about my status here...My 7 month PCR was negative and I have to go next week for another blood panel and a FS...I feel extremely well and I'm taking curcumine, resveratrol and lots of green tea... My LFT's been always between 35 and 40 EOT (wereas in the 90s prior to tx)...But I don't know how they're gonna be after taking curcumin. My URQ has dissapeared and I do hope the good ol liver is regenerating fast. It sure feels like it
Anybody knows for how long should I be taking Curcumin & resveratrol after EOT (and supposing my enzymes are in the the teens next week) because I'm gonna have a cataract operation in may...Would curcumine affect healing?
Muchos saludos y abrazos desde madrid
scuba
My approach was just fight like hell and pray!
I did 6 months standard SOC, failed, started back 2 weeks later, double dosed IFN and riba for about 6 weeks, then went to standard IFN and 1600 riba for a year, then tapered it back to 1200. Finished the 72 weeks and tapered down the IFN, reduced it 1/4 each week, also tapered down the riba.
My post tx regimen is eat fresh/raw as much as humanly possible. Lots of grains and beans, nuts and berries ( remember stakling the wild asparagus?)lots of live culture yogurt, soy milk. Cooking I substitute nonfat yogurt where I used to use cream. Great for creamy salad dressings too, tasty but good for you.
I use my food processor and juicer regularly. Hummus and flafels are super easy staples to make and they keep well. We eat very little red meat, tons of wild salmon, we have the occasional filet mignon or tritip, just not very big. No refined foods, Pasta is super easy/fast to make.
I take Alive every day with a "heart smart" smoothie. I take Heptapro, Curcumin, Resveratol and a multi vitamin. I drink coffee, but not much and I eat chocolate but not much.
No booze, although I read that a glass of good beer is good for you ( no alcohol fights!!)
I saw a huge improvement in my fatigue problems with the Alive.
I just stick to what HR laid out about diet as much as I can.
I have no clue if it's done any good, but judging by how I feel, something is working! I hope to see HR again and have a Fibroscan a year or so past my tx end.
From what I have read, it takes time to show improvement.
Forsee! How are you girl?
Cando, great to see you around, you too SF! Give a call when you are in town, Im in LA a lot.
I did 6 months standard SOC, failed, started back 2 weeks later, double dosed IFN and riba for about 6 weeks, then went to standard IFN and 1600 riba for a year, then tapered it back to 1200. Finished the 72 weeks and tapered down the IFN, reduced it 1/4 each week, also tapered down the riba.
My post tx regimen is eat fresh/raw as much as humanly possible. Lots of grains and beans, nuts and berries ( remember stakling the wild asparagus?)lots of live culture yogurt, soy milk. Cooking I substitute nonfat yogurt where I used to use cream. Great for creamy salad dressings too, tasty but good for you.
I use my food processor and juicer regularly. Hummus and flafels are super easy staples to make and they keep well. We eat very little red meat, tons of wild salmon, we have the occasional filet mignon or tritip, just not very big. No refined foods, Pasta is super easy/fast to make.
I take Alive every day with a "heart smart" smoothie. I take Heptapro, Curcumin, Resveratol and a multi vitamin. I drink coffee, but not much and I eat chocolate but not much.
No booze, although I read that a glass of good beer is good for you ( no alcohol fights!!)
I saw a huge improvement in my fatigue problems with the Alive.
I just stick to what HR laid out about diet as much as I can.
I have no clue if it's done any good, but judging by how I feel, something is working! I hope to see HR again and have a Fibroscan a year or so past my tx end.
From what I have read, it takes time to show improvement.
Forsee! How are you girl?
Cando, great to see you around, you too SF! Give a call when you are in town, Im in LA a lot.
My thoughts are that you can pretty well feel fully assured that you are indeed SVR. Your test at the end of month 7 really bears out that there is no viral load, and it would be EXTREMELY difficult to envision anything changing beyond this point. As you know, many doctors now feel that the 3 month PCR pretty much determines SVR, and going to the end of seven months certainly puts you in the 99% + group, as far as confidence level in SVR.
I do believe that if you want to feel great, and be able to really celebrate, you should have no qualms about asking your doctor to allow you to do the PCR now, just for your own personal edification. I do not think this is out of line at all, although you may need to pay the freight if the insurance company protocol prohibits this testing interval. I would personally do it if it were me, and every PCR test that I took after the initial 1 month, 3 month, and 6 month post tx points, all made me feel great again! I actually did do a 1 year post PCR, and then a 2 year, and 3 year. My doctor said that he doesn't need to do any further PCR's, and said that only if something odd (such as elevated LFT's) were to ever happen, he would not need to do further testing.
I would recommend regular tests with your GP, which usually include LFT's. These tests also make you feel very good about your SVR, and seeing 18's, or 21's on the LFT's just reinforces that you are playing with a new deck. You will also want to monitor things like BP, Thyroid, Blood Sugar, Triglycerides, and other important labs, since from what I have seen and experienced, these values may sometimes change for the worse sometime after ending tx. The metabolic syndrome seems to be a bit common for those who have tx'ed, and high BP can also result. Just keep a good handle on any changes in your normal bloodwork for a few years.
Other than that, I think you really can feel assured that you are SVR. Do another PCR if you can wangle it, and don't worry in the interim. The odds are absolutely overwhelming in your favor at this point. Best wishes, and good luck in the future as an HCV-free, SVR, tx- veteran, with a brand new life ahead.
DoubleDose
I do believe that if you want to feel great, and be able to really celebrate, you should have no qualms about asking your doctor to allow you to do the PCR now, just for your own personal edification. I do not think this is out of line at all, although you may need to pay the freight if the insurance company protocol prohibits this testing interval. I would personally do it if it were me, and every PCR test that I took after the initial 1 month, 3 month, and 6 month post tx points, all made me feel great again! I actually did do a 1 year post PCR, and then a 2 year, and 3 year. My doctor said that he doesn't need to do any further PCR's, and said that only if something odd (such as elevated LFT's) were to ever happen, he would not need to do further testing.
I would recommend regular tests with your GP, which usually include LFT's. These tests also make you feel very good about your SVR, and seeing 18's, or 21's on the LFT's just reinforces that you are playing with a new deck. You will also want to monitor things like BP, Thyroid, Blood Sugar, Triglycerides, and other important labs, since from what I have seen and experienced, these values may sometimes change for the worse sometime after ending tx. The metabolic syndrome seems to be a bit common for those who have tx'ed, and high BP can also result. Just keep a good handle on any changes in your normal bloodwork for a few years.
Other than that, I think you really can feel assured that you are SVR. Do another PCR if you can wangle it, and don't worry in the interim. The odds are absolutely overwhelming in your favor at this point. Best wishes, and good luck in the future as an HCV-free, SVR, tx- veteran, with a brand new life ahead.
DoubleDose
NYG, i personally would want to know now even if i had to pay for it myself. even though i know it would be alright i'm the type of person that can't wait.
Kalio, congrats on SVR. can you refresh everyones memory with your tx duration & regimen. If i remember correctly you took some other things along with the SOC drugs, oxymatrine, etc. can you please elaborate on that. thanks
Kalio, congrats on SVR. can you refresh everyones memory with your tx duration & regimen. If i remember correctly you took some other things along with the SOC drugs, oxymatrine, etc. can you please elaborate on that. thanks
Hi Deb, I would be just as crazed as you. You beat it my friend. Go enjoy life to its fullest!!!!!! Merlino
WOWOWEEEE I must make more posts on this forum - Kalio AND CanCanMan in one thread? I woke up this morning feeling quite depressed and this just turned my butt all the way around! Now it's time to do a jig!
Kal how in the world did you get back ON HERE FINALLY?????????
I'm going to call the doctor and see why this crazy logic later but I don't really care about the test anymore. I'll just relax, take a break and figure I'll sweat enough in October (which will be here before we know it). Got enough on my plate - I wouldn't be able to retreat right now anyway so........l will take the easy way out for once!
Kal how in the world did you get back ON HERE FINALLY?????????
I'm going to call the doctor and see why this crazy logic later but I don't really care about the test anymore. I'll just relax, take a break and figure I'll sweat enough in October (which will be here before we know it). Got enough on my plate - I wouldn't be able to retreat right now anyway so........l will take the easy way out for once!
Nice to see you and to read your news. Yeah, things are looking up and all is well, or at least better, these days. It was a long tough road for you but it sounds like you got some great advice, counsel and medical care over the past year or so.
Goof.....Kalio: How about posting some more info on your post tx, liver healing, diet plan?
Hey lets not just "gloss" over this waxing bit goof, thanks for bringing it to my attention.
details kalio, details.
Forsee, will be back on thursday for my dose of meds.
Hey lets not just "gloss" over this waxing bit goof, thanks for bringing it to my attention.
details kalio, details.
Forsee, will be back on thursday for my dose of meds.
youre svr....
Kalio: so good to see you, boy I did a whoopie when you svred!
Canny Man: I was trying to cut you a break, but if you insist!!!
Kalio: so good to see you, boy I did a whoopie when you svred!
Canny Man: I was trying to cut you a break, but if you insist!!!
Always good to see you, dood!
No comments on Kalio waxing before hitting the beach? You *must* be off you game, son.
Kalio: How about posting some more info on your post tx, liver healing, diet plan? Sounds like you're doing all the right stuff!!!
No comments on Kalio waxing before hitting the beach? You *must* be off you game, son.
Kalio: How about posting some more info on your post tx, liver healing, diet plan? Sounds like you're doing all the right stuff!!!
Hey guy, good to see you! I started grad school and having the flu for a few weeks doesn't help. Feeling pretty good otherwise. How about you?
Deb; Get the test, I know you can convince that doc you need it!
Deb; Get the test, I know you can convince that doc you need it!
Kalio, decided to stop by and saw your name. Glad to see your SVR, congrats and best to you.
Bill1954, 6 more months? Sounds like you can do it. Best to ya
NyGirl, I agree with the goofster, nekkid pictures please.
sfbaygirl, how you doing?
Forsee, Waiting!!!!!
Bill1954, 6 more months? Sounds like you can do it. Best to ya
NyGirl, I agree with the goofster, nekkid pictures please.
sfbaygirl, how you doing?
Forsee, Waiting!!!!!
How are you girl. Geez, I have missed you. SVR I am so happy for you. Give me a call. I am coming down week after next. I really miss talking to you!
Love ya'
Linda
Love ya'
Linda
Thanks and congrats to you- I wish you all the best. I just have to ask- do you try to wax the kite before you stand on it? Personally, I look foolish enough on a surfboard.
Later, gator!
Later, gator!
you cant put it off. it will only drive you nuts.
see, its driving you nuts right now.
i had imagined that (when i finish) i would wait 6 months before i did
my first post test. i realize now that i will be
nuttier than a fruitcake if i wait that long. i plan on testing at one month, 3 months.
6 months, 9 months and a year.
enquiring minds want to
know and you will not rest until you know. go ahead and get it over with.
see, its driving you nuts right now.
i had imagined that (when i finish) i would wait 6 months before i did
my first post test. i realize now that i will be
nuttier than a fruitcake if i wait that long. i plan on testing at one month, 3 months.
6 months, 9 months and a year.
enquiring minds want to
know and you will not rest until you know. go ahead and get it over with.
Hey! Bill, how ARE you? I read you are going the mega long haul, 30 more weeks? Yowza, you da man! You are a fighter, I'd do the same thing if I was in your shoes. I send up a prayer for you every day.
I am feeling great and enormously happy to be. I am so incredibly grateful for it too. I hope this round isn't horrible. I bet all that work you have done exercise and food wise is helping, I hope!
Hey Goof, they are the BEST. Here we have a wussy beach with no waves, perfect for this old gal. Be sure and get those safety vests, its cold up there! They are tippy but fun fun fun. Now I want to learn kite surfing.
Hope you are feeling well!
Great to see all you guys!
I am feeling great and enormously happy to be. I am so incredibly grateful for it too. I hope this round isn't horrible. I bet all that work you have done exercise and food wise is helping, I hope!
Hey Goof, they are the BEST. Here we have a wussy beach with no waves, perfect for this old gal. Be sure and get those safety vests, its cold up there! They are tippy but fun fun fun. Now I want to learn kite surfing.
Hope you are feeling well!
Great to see all you guys!
NYgirl: This is a tough call. TYou want the opinion of the group? Here's what I recommend: You post some nekkid pictures and we'll tell you what we think.
Relax girl - I stick to what I said before - why borrow trouble? Take it easy and don't dwell on it. Dwell on some other dramea for a whaile, then come back to this one.
Hey Kalio - I was thinking about you.... I just bought a couple kayaks.... :)
Relax girl - I stick to what I said before - why borrow trouble? Take it easy and don't dwell on it. Dwell on some other dramea for a whaile, then come back to this one.
Hey Kalio - I was thinking about you.... I just bought a couple kayaks.... :)
I just wanted to stop in and say hello. I take it you have achieved response and are awaiting 6 month labs. Assuming you have tested RNA negative at three months, I want to wish you well. If you get a chance, gimme the details. I haven't heard from you in a long time,
Take care,
Bill
Take care,
Bill
Can you say n.e.u.r.o.t.i.c !!
Just kidding, hey I know it's freaky but face it, YOU BEAT IT!
I can't believe it either, I was just yesterday freaking out because my 6 month is coming up in Feb.! I am so glad to leave feeling gawdawful behind, I don't want it snatched away by a PCR test.
I have never heard what your doc told you either, but it sounds fine to me.
Fl, BIG Congratulations to you! I hope you are feeling grand and rejoicing in your SVR!
Just kidding, hey I know it's freaky but face it, YOU BEAT IT!
I can't believe it either, I was just yesterday freaking out because my 6 month is coming up in Feb.! I am so glad to leave feeling gawdawful behind, I don't want it snatched away by a PCR test.
I have never heard what your doc told you either, but it sounds fine to me.
Fl, BIG Congratulations to you! I hope you are feeling grand and rejoicing in your SVR!
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