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Untreated for 38 years and scared to death !
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Untreated for 38 years and scared to death !

I am 54 years old and last week was told I tested positive for Hep C antibodies.......I was not a drug user but did have a blood transfusion 38 years ago.......I am terrified !  I haven't slept, or been productive since...I have been doing research on the net and feel confident I have the virus but I am not able to get any answers about the time involved...My gut feel tells me it's pretty serious that I have had this for so long and it went un noticed and un treated...Can anyone tell me what their thoughts are on the level of the virus going this long without being treated and how long can a person live with this going untreated....

Any input would be much appreciated...

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49 Comments
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Avatar_n_tn
I am kinda new to this, however, I too have been doing a lot of research on this.  My husband has had it (they say) for about 20-25 years.  I know that the liver biopsy will tell you the most information about the damage it has done.  You will have a lot of test to determine many things you will need to know.  The best thing is to talk this over with your doctor.  He should be able to give you information on the disease process.  Also, there are so many people here that have a lot of experience with this.  God bless you and good luck.
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Avatar_n_tn
thank you lovingwife for responding
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Avatar_n_tn
The only real way to tell where your liver condition is at is with a biopsy. I'm(almost)57 and have had hepc for thirty plus years and feel healthy except muscle-joint aches and some depression. If you feel ok that is encouraging but get a biopsy to determine your next course of action-you do need to know how things stand. It's too risky not knowing. I treated without biopsy and that is putting the cart before the horse. That being said-do not just wait to see what happens next. frank
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Avatar_n_tn
It is scarry, but their has been lots of advances in treatment lately.  I am 47 and went undiagnosed for almost 30 years and I have minimal liver damage.  I too had a blood transfusion.  The most important thing for you to do right now is find a good doctor who has lots of experience with hepc.  I went to a GI but now wish I had gone to a hepatologist.  I still may change over.  Beleive me I know what you mean about being scared, but the more information you find out the better.  Do you know what your genotype is yet.
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Avatar_f_tn
positive antibody test is not an indicator of ongoing hcv infection. You have to get a sensitive RNA PCR test to determine if the virus is still present in your blood. If it is present by a viral load count, you should get a biopsy to see if any damage was done to your liver by its presence. This is a waiting game big time. You have to get the viral load first.
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Avatar_n_tn
Double read the advice of Cuteus-If only the antibody test is positive its possible you may not need a biopsy. Further tests are needed though. frank -good luck to you!
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Avatar_n_tn
As others have said already, DO get a dr., DO get a biopsy IF you do indeed turn out to have Hep C, and not just the antibodies. Try not to be too scared if you are positive. I know that's hard, but like all of us, you will start to relax more as you come to accept the situation, and until you find out more about your status, you don't know what (if anything) to be afraid of. Learn all you can about the illness and then find out where YOU stand. As Cuteus said, prepare for lots of waiting. Every step along this road is a long process. Let us know what you find out. Best of luck to you.
Lauren
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Avatar_n_tn
First of all you have found a excellent web site with tremendous amount of knowledge and a great deal of support.  I have had hep c for 29 years and I am geno type 1b and feel healthy.  Going through treatment which can exhaust a person once in a while but the end will be near soon, after 10 weeks. My understanding is that some people will live a life time not knowing they have it.  All depends on how you take care of yourself and change some old habits.  eg liqour.  I was diagnosed because of my husband was found positive. I thought I gave it to him because of my transfusion but found out that neither one of us gave it to each other.  He is geno type 2. I would still be walking around not knowing with no symptoms.  He is now undetectable. The news is sooooooo scary and depressing but once you understand amd become knowlegable about what you have you will be able to deal with it.
Gina
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Avatar_n_tn
Hi,,,to put your worries to rest,,,Many,,many people have had it for that long and some even longer without knowing.  Thank goodness,,,You have no symptoms as many suffer achiness,,muscle pain,,, So that is a plus for you.  All you can do at this point is find you a dr and go to next step of taking a viral count to see if you even have the virus,,,active.  Then from there,,,liver biopsy will tell if any damage has been done.  I know what you are going through,,,As I was terrified also a year and half ago upon finding out,,,First Shock! Then Scared!  Then Pissed! lol  You found the right place for support! Good Luck to you!
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Avatar_n_tn
I just read all your responses and I must admit I am sitting here in tears....You are all so wonderful to take the time to lisyen to me and give good sound advise, thank you all so very much.......

I have an appointment with my family doctor tomorrow and I am sure he will test me for the virus and if present determine the viral oad as well....I have some muscle aches, but also have degenerative disk disease so not sure how much of that is related to the virus (if present)or just my usual back aches....I read some on the use of pain meds and am concerned about the Tylenol3 I have been taking for years.......

I live in Northern Ontario Canada where there is a shortage of Physicinas and my family doctor said I would be seen by a Specialist in Aug, can't get an appointment sooner than that....I am very concened about the timeing issues.....Also, at my age will they even consider treatment...I know I am getting way ahead of myself but my mind is one big worry machine right about now.......

Again, thank you all, each and everyone, your very very kind people........

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Avatar_n_tn
I'm new here too Veggie.  I will be starting tx soon. I am 39 and it is quite possible that I've had this for 35 years or so.  I'll never know b/c I most likely got it from blood products in the 60's, 70's, or 80's.  I didn't have any other outright risky behaviors. I really don't have any symptoms but was tested 12 years ago b/c I was in a high-risk group.  Mum says I got real sick for a week or so when I was 3.  Could have been the acute phase.
I have type 2b.  Hopefully you will too b/c it is the genotype most responsive for tx.  My viral load is 1.3 mil.  If you get a high VL count, don't worry too much as you could have 30 million and no liver damage. . . .or 500,000 and beginiing cirrhosis.  Everyone is different.  Personally, between the ages of 16 and 38 I drank enough beer to float a battleship, and my liver is pretty healthy.
The waiting is the hardest part.  It will be a couple months at least before you would be able to start tx, if you decide to treat.  The good news is that after 38 years, a couple months will not make a difference.
Good luck.
DJL
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Avatar_n_tn
I got ahead of myself.  First, let's hope that you don't have a viral load and just the antibodies.  It can happen, ya know.
DJL
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Avatar_n_tn
If I had serious liver damage would I be experiencing abdonimal pain or is that another thing that can happen without symptoms?
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Avatar_n_tn
Abdominal pain can be many things and hard to say,,however it can be a symptom of hep c but still again,,,no indication of how good or bad a liver can be.  Its really hard to pinpoint symptoms to liver damage because there is no rhyme or reason to this disease unless of course if someone is at end stage.  Lots of people also are treating in 50's and beating it! I think after 60 and deciding to do treatment is when chances go down on SVR.  You sound like me when I found out I had,,,I read and read and then would panic and read more. I was so upset and worried,,,I couldn't even function and believe me,,,,,everything turned out just fine.  I hope this helps some Veggie!
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Avatar_m_tn
I think we were all scared at first- I know I was.  If you are actually diagnosed with HCV, it can be treated.  Treatment was no picnic, especially with some additional problems I encountered, but I recently found out that I'm a sustained viral responder.  If I can do it, so can you.  I wish you the best,  Dave
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Avatar_n_tn
thanks artgal for the kind words, it sure helps to talk to people are going through this dreadful virus and have a positive attitude....

you all have insprired me to go for a walk and try to "re focus"...I have a pre planned mini vacation, leaving on Thursday that i was prepared to cancel but I think I will reconsider...My "doom and gloom" is taking it's toll on me already....I am usually a very upbeat and calm person and I have a hard time with this paranoid feeling I am experiencing...

the people in here are all so together and connected to each other, the rest of the world could learn from victims of this horrible virus.......

again, many many thanks to you all.......
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Avatar_n_tn
yes Honey that's exactly what it's been like for me since last Friday, you hit the nail right on the head....I have been on my computer day and night researching....the more I read about the disease the more symptoms I seem to have.......I'm driving myself nuts but I can't seem to concentrate on anything else....I guess I just want to know "how long will I live"....my common sense and intellect tell me only "God" knows that answer but I still search out info.....I know I will have at least another 2-3 months before I see a GI Doc and I am not sure how I am going to handle the wait.......

thanks for kind words, it helps :)
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Avatar_n_tn
As you already seem to know, you have found THE BEST place on the web to receive care, support and incredible amounts of knowlege. I won't repeat what people have already posted, I just want to add my bit to help you feel less anxious and scared. I have most likely had the virus for 30 years. My liver has no damage -- my biopsy just showed the presence of the virus. I do think I have had a myriad of symptoms throughout the last thirty years -- fatigue, odd aches and pains, flu that would come and go very quickly, and depression. I have great hopes that I will come out of treatment (I am a newbie -- only up to shot 5) not only having eradicated this virus but ending up a healthier and stronger person with the absence of these odd symptoms.  When I was diagnosed, my doctor made a point to tell me that many people live with this virus for years and years and very likely will die of something completely unrelated to the hep c (like old age).
So get the rest of your tests and then move forward -- and think positively -- it is very likely your liver is just fine.
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Avatar_m_tn
I forgot to say, I was untreated for 34 yrs and was age 53 going into treatment.  My genotype was 1b and my viral load >2,000,000 copies.  Later,  Dave
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Avatar_n_tn
Hi there. I can only echo what everyone else has said. Your feelings are quite natural, and most of us have experienced the same thing when we first found out. I had hcv for 36 years before I treated. I knew that I had it for 13 years prior to beginning treatment. During those 13 years I weighed many factors, and for 12 of those years, treatment was not a good option (too many reasons to list here, but if you're really interested, I'll tell you) At some point my liver enzymes went up, I started feeling awful, and since I was in my 50's, I decided to go ahead--with my doctors' encouragement. Like Cuteus said, first get the pcr test so you can see if it's just antibodies or there is a viral load. If  you do have the virus, arm yourself with information, and this is one of the greatest places on the web for support, information and a lot of laughs with people who really understand what it is to go through all the phases of this process. If you do indeed have hep c, there are a lot of variables that should be considered before beginning treatment. Viral load, amount of liver damage (a biopsy is the only thing that will tell you that), your age, length of tiime you've had the virus, and many more. Your doctor will help you decide. Come back to this site often and ask any questions that are on your mind. We're all here for you. Judi :-)
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Avatar_n_tn
what made you decide to get treatment, if you don't mind me asking
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thank you for sharing your info with me, it helps to know I am not the only one here that is the age I am and just found out, thanks a lot :)
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Avatar_f_tn
I found out when I was 51, treated and now I am two yrs older. age is a big reason many decide to treat, your chances for SVR lower as you age and damage increases.
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85135_tn?1227293372
v eggie dip.
I am 54 years old and have had the virus for 38 years. Odd with the same number, you and I. There is some anxiety at each stage of the testing and also while waiting for test results during treatment.
So far I am doing well. My genotype is 1b, viral load was 620,000 and the biopsy had minimum liver damage. At week 12 of treatment, the virus was undetectable.
Before tx, I had some joint and back pain, some liver pain and fatigue.
I also have used T3
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Avatar_n_tn
"IF" you have a battle to fight it can wait till after vacation! frank
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Avatar_n_tn
Veg, in answer to your question, I decided to treat when my liver enzymes suddenly went crazy and I realized that I was having muscle and joint aches, and very depressed for a while. Had a biopsy and was grade one stage 1. Understood that my chances for a good outcome would be better the younger I was, and I was already 55. So I treated and am so glad I did. It was hard, but definitely worth it. Like you I was scared to death, but as time went on and particularly because of the support and wonderful people I found here, my fears dissipated. Have a wonderful vacation and deal with this when you get back. Keep us all posted because we really care. Judi :-)
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Avatar_f_tn
after my first antibody test, I went to my PCP who repeated it and did the PCR and genotype also. Your common sense is right, get a biopsy.
He sounds like the first GI I had, I dumped him.
Have a great vacation
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Avatar_n_tn
Can you please contact me via e-mail.  I will have some information for you that you might need.  My e-mail address is ***@****
Thanks
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Avatar_n_tn
dont worry to much about your age I am 62 and have had it for 40 years a deayed time bomb present from the Military.I am now  into my last 9 days of a years treatment of Pegasys.cleared at 12 weeks.
Probably one the worst year of my life but as long as you have good family support you will get through it.The worst aspect of it all was feeling very insane a lot of the time and that has'nt let up to this day,but there are drugs for that.ok
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Avatar_n_tn
thank you for your response addi, it's much appreciated....

One of my fears about my age is I currently live in Canada (I am an American citzen, living here past 5 years).. I have pretty much severed all my ties, insurance, property, job, etc.  in the States and don't hold up a big amount of hope in the Canadian Health Care System, they suffer severe shortages in their system and in many cases I have experienced myself their "sub standard" care....I think and I sure hope I am wrong that they will "dismiss me" if I need treatment...I have been looking at some health programs available in the States that cover medical costs and I can't seem to find any....any suggestions?  I have family in TN and that was my last known address there....

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Avatar_n_tn
hello Im new to this site.I have hep c also,please go to this site ,it help me, Lloydwrighthepcfree.com may god blessyou

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thank you all for your input...I have decided to go on my mini vaca and hopefully can put my fears away for a few days...I went to my family doctor today and he said I need to get a "confimation" of the first testing before I get a test that determines if I have a viral load, is this common practice?  Seems like to me he could of done all these tests in one shot but I know nothing of the blood work and lab procedures....At any rate, he said it would be another week before he gets the confirmation back, then next step will be to get how much virus is in me, (if the confirmation is positive)...that will most likely take another week, then he tells me because my ALT and ASL and Bilruben (not sure if I spelled that properly) are just slighjtly elevated that I probably don't need a biopsy...I am not sure I believe him, common sense tells me if I have damage I need to know how much, correct?  He said he will send me to a GI in Aug or Sept and not to worry....How the heck am I supposed to not worry...lol.........

I want to thank you all again for your kindness and knowledge, it is so good to have this resource and it is nice to have people who are going through it to ask quetions to...Sometimes I don't think the Docotors have all the answers...If you know what I mean........

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v eggie dip. In answer to your question about
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Avatar_n_tn
Hello everyone :)

I have been told that you need an eye exam prior to starting treatment...Does this mean if you wear glasses you cannot be considered for treatment?

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ooops I posted my last message wrong, sorry :)
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Avatar_n_tn
it's the waiting game that's driving me crazy!!  If I had it my way I would be in the Hospital as we speak having a liver biopsy but they tell me I have to wait till Aug (maybe longer) to even see a GI (I'm not good at waiting)....and you know the mind works in funny ways, I have had myself dead and buried from this already  LOL...someone posted yesterday the mental image of a person dying of cirrhosis and I can't get that out of my mind....this is very very scary stuff...two weeks ago if someone asked me what Hepatitis is I honestly could not answer, I would probably say "oh isn't that the virus you get from IVDU", and had no idea the seriousness of it all....this forum has been extremely informative, thank you all............
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Avatar_m_tn
I hope it wasnt me that gave you the visual image of my sister dying of HVC.  If it was Im sorry.  I saw her die two years ago. I have just been told I have the hvc antibody, so you can imagine how i felt kicked in the guts..I would like to comfort you by saying she did not see a doctor for anything for the last 20 years, she distanced her self from her family including me because she was gay, why i dont know. she drank heavily. two years before she died she was celebrating christmas with my mother, we both saw that she had a  gray skin color and the yellowish tint in her eyes.  my mother told her she needed to see a doctor,  at which time she became angry and stormed out..she avoided us until she died.  she waited too late..you and i and many others have the good fortune of knowing. at first I like you feel like i was handed a death sentence.Its been 2 weeks since i found out i had it..after my sister's death, i thought I was dead.. i have found out otherwise. we are the blessed ones i can promise you that. try not to worry as much. whatever fate has in store cannot be changed.  it has helped me accept things if i expect the worst and hope for the best.
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Avatar_n_tn
I remember feeling the same way you do now when I was diagnosed back in October 2003.  I remember being convinced that I wouldn't be around the following year to plant my garden and do all the things that I love.  I truly believed my life was over.  Those were very painful days, weeks and months as I waited to find out just how serious my case was.  Waiting for the biopsy was the worst because I didn't know if my case was mild, or if I had cirrohsis.  I expected the latter.  

There's no easy way to relax when you're playing the waiting game.  We've all been through it and we know it's pure hell. The best thing you can do is try to keep busy and distract yourself with other things.  

By the way, my garden is looking awesome this year!

Susan
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Avatar_f_tn
Hi I have had hcv for 16 years first time I went for treatment they lost 6 bottles of my blood so I never went back didnt trust them!! I get treated like a leper when I go to the dentist had to lie to be able to get a job 5 years ago and say I had.nothing wrong with me as benifts forced me into work after I bought my 3 boys up who are now teenagers so all that time I gone untreated I am now 40 years old ssssooooo tierd find it hard to get out of bed let alone go to work were I on my feet constently . I will not have a.biopsy!!!!!!! Or so called treatment I have total fear of needles !!!!!! I dont.take drugs I dont drink I think my hcv getting worse and scaired but I just cant inject myself so I carry on       .but I do believe if I not treated I not being a gini pig !!!!!!!
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179856_tn?1333550962
Good luck o you then. Many all of us were scared of taking injections but after finding out that our livers were severly damaged by biopsy decided not to pretend the disease did not exist and wasn't hurting us.

Oh and veggie DID do treatment after finding out herbs were hurting her liver three times more than just the virus which does it all by itself. As far as I know she is cured. She was a nut :)

If you are so sick you can't get out if bed, perhaps that should motivate you to do something rather than pretending to be an ostrich. It's your life but it sounds very debilitating to me and I'd be more scared about what that might mean than a silly tiny needle.
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Avatar_f_tn
so many things about treatment scared the life out of me BEFORE I started treatment. Its the fear of the unknown. whats behind door #1. The shots are WELL after the first one are no big deal. The first one is tough I will not lie. Cried, sweat, freeked out but did it!!!!!!!!!!!!!!!!!!!!!!! And it did not hurt. The only time I have had an ouch is when I didnt let the alcohol dry on my tummy before injecting. Life is worth a little sting and some hair shedding. I'm just telling people I got a new dog. :) dont let the fear of the unknown scare you. It is worse than the reality of treatment.
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1765684_tn?1333822768
When I was diagnosed with T1 diabetes, I had to learn how to inject myself with insulin.  My nurse saw how freaked out I was and said, "There's a FOUR YEAR OLD BOY next door doing the same thing you won't do."

Perspective.

Without needles, I'd have been dead in 1992.
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2094297_tn?1345392693
  Have had this for thirty plus years (blood transfuion) i have not been real smart about this , 4yrs ago went to dr. found out had it , had all kinds of systems , muscle ache , headache, fatigue, and then did the full monty , biopsy, all work up etc... had not active with little scarring .... so did nothing about it as the hep dr told me the treatment could be as bad as the disease
and in the following years there working on a cure........ lived life as normal..
four yrs later --- ka blam -- it hit me hard went active and now im very sick.
dont know what im going to do now waiting to see dr   again ..., my suggestions for all, is to take this very seriously and start treatment right away do not wait, dont do what i did , quit any alcohol use immed. before it is too late, i have been reading alot about this and i have been such a fool
please learn from my mistakes ...... will follow up with my story when i have more to add.
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Avatar_m_tn
I just found out I have heb. c. I have an appointment to see a gi in like three weeks. I am scared and I know I have had this for at least 20 years. I am 31. I got it from my rapist who is heb c positive. I need some help or advice. I am scared I won't live and I feel like a dead man walking. My husband does not have it thank god! Please if you want to talk and I do need someone to talk to me about what I am going to go through as I am scared as hell. ***@****
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5079728_tn?1365553589
Dont feel alone. I did the same exact thing and now I am stage 4. I have had lots of test completed and my doc wants to monitor my blood for the next couple of months to make sure I am ok for treatment. I was so scared at first and still am but being part of this forum has calmed my nerves so much and I am understanding things more. My liver is still compensated and I still have a good chance at treatment. I am believing for the best. Stay strong and lets believe for our miracles.

God Bless.
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Avatar_f_tn
You sound like myself 6 months ago. I found out I had hepc from a routine blood test. I had no symptoms. As you, I could not sleep, had anxiety and depression. I treated on triple tx and a week ago received the wonderful news that I was UND at 24 weeks. I also got mine from a blood transfusion 35 years ago in childbirth. I had minimal liver damage and viral load was low. They will run these tests on you. Try to calm down. Remember there is a cure. This has an end. I am not saying this is easy so you must get ready to fight back. You can win. Stay on med help for info. They saved me. There are so many dedicated and informative people dedicating their time. They will help you through this. God Bless you and get better soon!!!
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3097131_tn?1357088481
You guys should start a new post,this one is very old.You would probably get more response.
Country
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Avatar_f_tn
My friend has recently told me she had hep c and has been around my baby. It's so immature to think like this but she's in an active addiction. I'm scared should I be. I'm not around her a lot but Imma total germ a phone
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1140115_tn?1348499315
Hi, folks,

Since this thread is old and the original participants are no longer taking part, we'll close it now.  If you'd like to ask a question or start a new thread, please click the "Post a Question" button near the top of this page.  Thanks!

Claire
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