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Author Topic: Newly diagnosed...looking for support  (Read 15633 times)

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Offline newbie101

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  • Posts: 5
Newly diagnosed...looking for support
« on: August 14, 2014, 10:07:40 am »
Hello everyone. I was tested positive for HEP C antibodies about a month ago. I am 34 female. I donated blood in April and everything was fine. I have no idea where I contracted HEP C and that can be very frustrating. I have  never used any drugs at all, never received a blood transfusion. Was fine in April then during yearly screening at my doctors office beginning of July I was in complete shock to get the call that I was positive for antibodies. I went and retested and they ran a liver enzymes test and viral load. Liver test was normal and viral load was undetectable. I've researched enough to know that's a good thing...but I am concerned that it was undetectable possibly because it was a new infection and I feel like I'm sitting around waiting for this virus to grow. I see a specialist next month. So I'm wondering...if it's still undetectable next month does that mean I have a good shot that my own immune system is defending this? How long after developing antibodies does the viral load start to show? I'm still in alot of shock and have only told 2 people. So aside from the internet....which is full of scary information i don't know. I've been looking through this site and thought talking to actual people who have dealt with this would be more educational and helpful then just another article....thank you!

Offline Mike

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  • Posts: 999
Re: Newly diagnosed...looking for support
« Reply #1 on: August 14, 2014, 10:33:14 am »
Hi Newbie,

It  takes approximately 3-6 months after exposure to Hep-C  to test positive for the virus if your immune system doesn't fight off the initial infection.

Talk to the specialist about this and he/she may want to run another viral load test just to be sure.

Sounds like you'll be OK. I know the waiting isn't much fun - makes you feel like your life is on hold.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline newbie101

  • Member
  • Posts: 5
Re: Newly diagnosed...looking for support
« Reply #2 on: August 14, 2014, 10:43:42 am »
Thank you Mike...so antibodies will show up 3-6 months before the viral load? It seems confusing that you would have antibodies....yet no trace of the infection in your blood? and if my viral load is undectable does that mean I can or can't pass on the virus?

Offline Mike

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  • Posts: 999
Re: Newly diagnosed...looking for support
« Reply #3 on: August 14, 2014, 11:34:57 am »
Yes. The antibodies will show up first, as they are "blood proteins produced in response to and counteracting a specific antigen. Antibodies combine chemically with substances that the body recognizes as alien, such as bacteria, viruses, and foreign substances in the blood."

The presence of one Hep-C virus can trigger the bodies immune response, which will produce the antibody.

Current viral load tests are only sensitive if there are more then 15 virus per UL/ml of blood. If a person has an active infection and the bodies natural defenses are ineffective at combating it (antibodies), the virus will multiple over time (3-6 months) to the point that a viral load test will detected them.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline willie g

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  • geno 1 25million etc. s/o for treatment
Re: Newly diagnosed...looking for support
« Reply #4 on: August 14, 2014, 11:41:15 am »
hey newbie, sounds like your doing OK, no viral load etc. and when you see specialist they will want to do their own lab work I assume .mine did because there were some info from my primary physic an that didn't make since and like mike said your immune system may just fight it off, I have had friends that were in the same boat as you and had their blood done every 2 to 3 months and then it became undetectable. this is a great site, I have been on this site for around 6 weeks and have learned so much. I am positive and they now have new oral meds that are having a great success rate with little side effects,, not like the old days but the good news is your fine right now!  as far as precautions go for your own peace of mind just figure like you have a cold, and now a days there is a lot of crap outhere, fl us etc. just don't share tooth brushes, razors, and things of that nature, its blood on blood that is the culprit and really you don't want to share that kinda stuff anyway. ignore the horror storeys because you don't have one and a lot of people have opinions yet they are not drys. or caregivers in the field your worrying about. I am not a Dr. either so I am just sharing my knowledge that I have acquired since going threw being tested positive and going to specialist and having blood drawn again and then was put on a treatment plan,so go on enjoying your life, I know its scary because I was too but now that I have had to start therapy[two pills a day] I am glad it was detected because I am now on my way to victory. no need in telling anyone at this point because right now there is no point! you take care newbie and carry on! all your questions and worry's leave for the doc when you see him.  willie g


Offline newbie101

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Re: Newly diagnosed...looking for support
« Reply #5 on: August 14, 2014, 11:59:45 am »
Thank you  both! any information is so helpful right now.

Offline Feeling hopeless

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  • Posts: 10
Re: Newly diagnosed...looking for support
« Reply #6 on: August 21, 2014, 04:23:25 pm »
I feel your pain! I truly do. I don't feel like ill ever have a normal life again. relationship wise etc. I'm truly devastated. I think its wonderful that you have a negative viral load I can only hope to get that call today or tomorrow. Although not out of the woods I would be able to breath! I think youre going to be ok. I too have never touched a drug in my life never had a needle stick and tested negative for everything last January. no clue where I contracted this disease. I wish you luck and keep us posted. :)

Offline Cicero

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  • Posts: 15
Re: Newly diagnosed...looking for support
« Reply #7 on: August 21, 2014, 07:25:17 pm »
You WILL work your way through. It is not that serious if you are healthy. Here's my story. I have had Hep C since I was 36, I am 58. I have genotype-1, and I know all my other sub-typing. I do not know exactly when I contracted it. I tested positive for it when I was 36. I have never been too sick, although since I first test positive and before, I could tell something was wrong. I would feel tired something as if I wanted to take a deep breath. I also had pain in the liver region, front & back (right-side below pectorals & the corresponding spot on the back). I have no cirrhosis, and I know that this is GOD'S doing.

I guess I could be considered an expert of the disease and treatment. I have been treated 3 xs and am on # 4 now. This time I will be cured according to my doctor or I should say liver-specialist-hepatologist at the Univ. of Cal-San Diego Med Center (UCSD). The first rule is always get a physician who is a specialist and whose specialty is Hepatology, preferably in some University Medical Center. I was first treated with interferon & ribavirin in 2000. The viral load lessened but stopped reducing at around 200,000 IU/ml. I was treated by Univ. CA as SD Hepatology Dept. Then, in 2002, I was treated at UCSD with pegalated (peg) interferon & ribavirin, same result, except the viral load was reduced a little lower before it stopped. That is, both times I was classed as a "non-responder", i.e., there is no continued positive response to the drugs. The second rule, this virus is alive and cunning. I believe, in its own way, it has a brain, as do all viruses, because they react, adapt, and mutate all to exist, as humans do. Here is the reason for Rule 1. In 2012, I was treated again. This time, with Triple -Therapy, i.e., pegalated interferon, ribavirin + Telaprevir, I was treated by a specialist, but not a liver-specialist, hepatologist. Instead, he was a Gastro-Endocrinologist or something like that. From the beginning, he lacked the detailed sophistication of my first 2 treatments. It was he, an office record keeper and a receptionist secretary. Compare that to my current treatment where I have an entire team working on me, all liver-specialist-hepatologist. The team consists of the previously mentioned MD-hepatologist, a nurse-practitioner, a RN, an admin-assistant & 2 assistants. However, at the time of treatment 3, the health insurance system had gone so haywire and I was so tired of treatment and did not know of the great strides made in Hep-C treatment that I simply went where my primary care provider (PCP) sent me. Initially, treatment went well. At 12 weeks, my viral load was non-detectable. I continued on the triple therapy for 12 more weeks, for a total of 24 weeks or 6 mths, with my viral load remaining non-detectable. The protocol for the triple therapy, for a person who is a non-responder, is to continue treatment, but only with the pegalated interferon, ribavirin (no Telaprevir) for 24 additional weeks. I didn't know that then, and my "doctor", the non-hepatologist told me I should stop treatment. My blood reading were OK, no anemia (a common side effect or Telaprevir) or other side effects, I told him about my prior two treatments, but he took me off the meds! Can you believe it? He treated me as if I was a "treatment naïve patient", i.e. a person who has never been treated, instead of a non-responder! Of course, at the six-month testing point my virus had returned. (If your virus is reduced to non-detectable, you test at 6 mths, and if it is still non-detectable, you are deemed as having a "sustained virological response” or "SVR"). After I tested positive at the 6 mth post treatment point I returned to his office and we had a showdown. I made him show me in my records or confirm that I had told him about my two non-responder episodes, and I showed him in the instructions that came with the drug that a non, or null-responder such as myself was to continue on 2/3rds of the triple therapy treatment for an additional 24 weeks. First, he tried to say I was wrong, and then he gave up and apologized. I should have sued him, but . . .

Now, after clearing a resistance tests because I could have created a resistance to like drugs, by taking Telaprevir,  a related drug, in a way that wasted my time, i.e., contrary to protocol,  I am taking Sovaldi (Sofosbuvir) + Olysio. After 4 weeks, my viral load went from approx. 730000 IU/ml to 17Ul/ml. We will see what happens, but I feel like this is the time. Later

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Newly diagnosed...looking for support
« Reply #8 on: August 22, 2014, 01:10:54 pm »
Hey Cicero - I enjoyed reading your story - when you are done with treatment (or before if you want), I hope you submit it to http://www.hepmag.com/hep_stories.shtml
Stories are how we help other heal.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Cicero

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  • Posts: 15
Re: Newly diagnosed...looking for support
« Reply #9 on: August 22, 2014, 01:17:51 pm »
Sure, I will submit my story. It may help others to do what I failed to do. Research treatment protocol and their treaters thoroughly, and not rely solely on the  MD mystic.

Offline newbie101

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  • Posts: 5
Re: Newly diagnosed...looking for support
« Reply #10 on: August 27, 2014, 11:56:25 am »
feeling hopeless....i still have not seen my specilist, not for another almost 2 weeks. So i have nothing new yet. But I'm trhying to remain hopeful. Please keep me posted on your as well!!

Cicero...wow...thank you for sharing your story, I will definitley remember that when and if I have to have treatment. Please let keep me posted on your current treatment and praying this is the time you achieve SVR!!

Offline Cicero

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  • Posts: 15
Re: Newly diagnosed...looking for support
« Reply #11 on: August 27, 2014, 01:51:55 pm »
I am happy my story helped.  I will keep the forum updated on my treatment and I also pray, and by faith know, that this is the time.

Offline jlambaustin

  • Newbie
  • Posts: 2
Re: Newly diagnosed...looking for support
« Reply #12 on: August 28, 2014, 10:53:04 am »
Hello
 I also have recently diagnosed with hep c from my primary physician, he is sending me to specialist, but they are month out on appointments, mine is next week ( finally), what is more devastating is I am engaged to marry in 2 months , I want more info from him before I tell her, scared and think I will never have a normal relationship, right now don't know what to say or think sleepless at nights

Offline rainbowray

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  • Posts: 263
  • Gen 1B
Re: Newly diagnosed...looking for support
« Reply #13 on: August 28, 2014, 11:39:03 am »
To jlambaustin,
I have been married over 35 years, I have had HepC for 43 years. She has been tested twice and is negative. Since we have 3 kids and all are healthy, get married with the same joy before you found out. Normal hygiene and good clean habits is all you need to do. I'm confident your Doctor will give you a positive response.

Offline Cicero

  • Member
  • Posts: 15
Re: Newly diagnosed...looking for support
« Reply #14 on: August 28, 2014, 02:03:34 pm »
Yes, I have had a girl for years, until we broke up recently, and Hep C is not considered a sexually transmitted disease. It is not like HIV. It is hard to get, and has to be blood to blood, not semen to blood or  sex-bodily fluids to blood.  You have to tell her you have Hep C though. That is hard, but I am sure she loves you and this is merely a tough hurdle.

Newbie, I got my 1mths results on the new drugs, S & O ((Sovaldi & Olysio).
- AST 18, ALT 9
- Total bilirubin 0.4
- HCV viral load -  Not Detected.

I am happy to say the least.  I must continue treatment for 8 more weeks (2mths) and then, 12 weeks AFTER I stop treatment we will retest again & if  am still at virus  non-detectable I am considered cured. (as long as I stay that way.)

So if you have it, it can be cured

 

Offline newbie101

  • Member
  • Posts: 5
Re: Newly diagnosed...looking for support
« Reply #15 on: August 28, 2014, 02:17:25 pm »
jlambaustin, I know that feeling....i had just recently been dating only about a month when I found out. I told him within a week. it was so hard and I was knew he would leave me over it. But he didn't. He has been so supportive of this entire ordeal and have been together almost 4 months now. I have done alot of homework and learned alot. Not knowing where I contracted this is a daily struggle for me and getting to a place of acceptance because it can't be changed.

Cicero...*big smiles over here!* congratulations!! That is amazing news! SO HAPPY FOR YOU! I've been waiting since the beginning of July to see my specilist just a little over 2 weeks left....I'm sure they will redo my tests and I'm praying and hoping all is still undectable...if I tested negative in april...then positive in July I assume I either already had it in April and it wasn't showing up yet or somehow got it between april and july ( i did get a tattoo in june? ) so if july was viral load negative and lets say I contracted in June...If I'm still viral load negative in September does that mean I'm fighting off the infection naturally??

Offline jlambaustin

  • Newbie
  • Posts: 2
Re: Newly diagnosed...looking for support
« Reply #16 on: August 28, 2014, 02:38:54 pm »
Thanks guys needed to talk to someone, will no more Tuesday, congrats Cicero , I used I v drugs in 70s but very little , just don't know how long I've had it, but now just hope everything goes well

Offline Cicero

  • Member
  • Posts: 15
Re: Newly diagnosed...looking for support
« Reply #17 on: August 28, 2014, 05:59:15 pm »
Newbie:

Others know more about the pathology of the virus than I. I see where Mike said it takes 3-6mths to know for sure so I would go with that. Using those figures, if you still test negative 6 -7 months after the initial positive test, I would say you are home free and you dodged a bullet. However, ask your specialists about that.

Thanks for the kudos!!  I still have at least 20 + weeks to go. 8 more on treatment & 12 + to wait for the post treatment viral load testing, but GOD is blessing me this time. I sure feel lost better. Later

 


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