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Author Topic: Dont Know what to do! :/  (Read 7103 times)

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Offline flashster

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  • Posts: 8
Dont Know what to do! :/
« on: June 21, 2017, 12:52:03 pm »
 Hello everyone! I was diagnosed with Hep C in 2015! I am only 21 years old and im and super scared! My rna test have always been negative! My rna test came back negative last year and im supposed to do one  soon since its been a year! The thing is, ever since I got infected I have been itching 24/7. I've seen multiple doctors and they still cant figure out what is causing the itching. If I do need treatment how would it work exactly. I still get insurance thru my father, so if they put the request through, is he going to find out? Or is there a way I can avoid this. I feel like i dissapointed my parents, myself, and my family. I wouldn't wish this upon my worst enemy. I am like the angel of my family and just made one mistake and now I am going to pay for it? Am I not going to be able to live the college lifestyle ?Any advice?

Offline jberlin

  • Global Moderator
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  • Posts: 304
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Dont Know what to do! :/
« Reply #1 on: June 21, 2017, 03:25:43 pm »
Hello,

Coming to this forum shows you do know some things to do, which is to research and reach out. Sorry you are in this confusing situation.

First it is fine to be sorry for things in the past, and learn from mistakes, but you can only be judged by what you do now and every day in the future. The past is the past, so work on improving what you can control, not what you can't. You need to discuss this with responsible adults in your life, whether your father or someone else, certainly medical professionals, as nothing good can come out of keeping a secret like this. (but maybe you find out whether you really have Hep C first - see below)

Second, I don't understand your blood test results. You either have Hep C or you don't. Some few people, more girls than boys actually, do beat the virus and cure themselves, but did you ever have a quantitative test that showed you with a Hep C viral load? If you tested negative after it had been six months since exposure, you are negative and considered cured, or you never had it, Hep C doesn't just come and go. Get a blood test via a competent GI specialist.

Third, if you do have Hep C, you are really lucky as it is easily cured these days, much different from 10 years' ago when it was very iffy.  Again, get competent medical advice.

Itching? I don't see how that would be related to exposure to Hep C at all, but it was a side effect of many of the Hep C treatments. Probably beyond anything this forum could advise on, but we will see what others have to say. 

Hope this helps, do keep us informed as to your progress.
jack

Offline flashster

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  • Posts: 8
Re: Dont Know what to do! :/
« Reply #2 on: June 21, 2017, 03:33:18 pm »
Thanks, well the antibody test was positive but the RNA test was negative! My doctor said im undetected but im takin another test soon to verify that for this year! I just dont want to tell anyone this and just want to get it treated and forget about it! Feels like a burden upon me!

Offline jberlin

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  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Dont Know what to do! :/
« Reply #3 on: June 21, 2017, 04:35:48 pm »
The antibody test means nothing at this point, the RNA is everything. You may never be able to give blood if the antibody test reads positive, but if the RNA comes back undetected, you do not have Hep C....  So just avoid things that risk exposure to Hep C in the future, and you can breath again!

Let us know,
jack

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Dont Know what to do! :/
« Reply #4 on: June 21, 2017, 04:45:45 pm »
Looks like you don't have hep C based on those results. If you retest, you will likely test positive for the antibody, but negative for the virus. It can be confusing, but the antibody just shows you had an exposure. It is not the virus. The antibody won't hurt you or every develop into anything. Just like a photo of a gun can't hurt anyone, neither can an antibody.

Itching can be caused by lots of things - dry skin, dryer sheets, nerves, allergies, etc. Now your job is to find out what is causing it, but it isn't hep C.

Enjoy college and learn how to stay safe.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline gnatcatcher

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  • Posts: 1,372
Re: Dont Know what to do! :/
« Reply #5 on: June 21, 2017, 04:47:53 pm »
Flashster, Jack and Lucinda gave you a lot of excellent advice. I'm just writing to say "hello and welcome" and in case reading things worded a little differently helps.

If the RNA tests are the type that would show an actual viral load if present (they usually contain such words and abbreviations as "HCV RNA Quantitative PCR"), but instead they showed "negative" or "undetected" or "not detected", then you don't have Hep C and therefore you don't need treatment. The antibody test will continue to be positive, because it shows only that your immune system encountered Hep C in the past and made antibodies to it.

Itching can be caused by so many different things. It could be coincidence that you started to itch just when you were exposed to Hep C. I hope doctors can soon figure out what is causing the itching, because itching 24/7 is miserable -- my sympathy!

Best wishes,

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline flashster

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  • Posts: 8
Re: Dont Know what to do! :/
« Reply #6 on: June 22, 2017, 02:00:32 am »
Thanks for the support guys! Ill keep you updated ! Going to live up my birthday week in July!  The doctors are stumped! I been to about 5 different doctors and they cant figure out the itching :/

Offline Tommy E

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  • Posts: 29
Re: Dont Know what to do! :/
« Reply #7 on: June 22, 2017, 02:13:05 am »
Check out a Chinese doctor - the kind that's off the beaten tract. About 10 year ago I had severe (daily) heartburn. Doctors couldn't do anything even with strong drugs. So a Chinese doctor (recommended by a friend) gave me little colored pills, awful tasting tea and had me eat chicken and veggies for 2 weeks. Heartburn gone in 24 hours. I kid you not.

Offline Lynn K

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  • Posts: 4,263
  • Get tested, get treated, get cured, fight Hep c!
Re: Dont Know what to do! :/
« Reply #8 on: June 22, 2017, 03:18:49 am »
If you test negative in the HCV RNA test you do not have hep c and sorhere is nothing to be done no treatment for hep c would be needed as you do not have hepatitis c. Having positive antibodies only means you were exposed at some point in your life but abour 25% of people are able to beat the virus without treatment.

However, you will always test positive for antibodies. Antibodies are not the virus they are made by your body as a defense against the virus. Antibodies are now a part of your own immune system.

At to the itching have you tried  Benadryl or maybe oatmeal soaks in the tub or oatmeal based soaps? Itching can br many things including stress induced. I hope they find the cause of your itching bit if you test negative for the virus you do not have hep c.

Good luck to you
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline flashster

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  • Posts: 8
Re: Dont Know what to do! :/
« Reply #9 on: June 23, 2017, 03:58:34 pm »
Im going to try benadryl hopefully it works! Do you guys ever feel judged whenever you have to get blood work done for hep c? I have to take an ultrasound of my abdomen and the assessment of the refferal says chronic hep c. I just feel like my doctor didnt have to put that on there for the world to know smh

Offline Tommy E

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  • Posts: 29
Re: Dont Know what to do! :/
« Reply #10 on: June 23, 2017, 04:10:28 pm »
I remember my ultrasound. Felt great - like a massage.

Treat feelings of being judged like dust you brush off your coat. Both are of equal value.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Dont Know what to do! :/
« Reply #11 on: June 23, 2017, 05:19:45 pm »
flashter, if your ultrasound requisition didn't say chronic hep c, your insurance might not pay however much they're willing to pay towards the cost. Insurance companies require an appropriate reason (diagnosis) for why a test is ordered.

Tommy E, I agree that ultrasounds feel great and like a massage.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,263
  • Get tested, get treated, get cured, fight Hep c!
Re: Dont Know what to do! :/
« Reply #12 on: June 23, 2017, 07:00:32 pm »
Have you had a test for the virus that come back as detected and with a viral load?

Do you know your viral load and genotype?

If you only have a positive antibody test that does not mean you have hep c. Only if you have a detected result in the HCV RNA by PCR test otherwise you don't have hep c.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline flashster

  • Member
  • Posts: 8
Re: Dont Know what to do! :/
« Reply #13 on: June 24, 2017, 02:50:44 am »
Oh so does that mean my dad will know exactly what test was ordered? Because im still under his insurance. Im not too sure how insurance works lol. My test for the actual virus never came back positive just the antibodies test was positive, no viral load. The first 2 times it came back negative. I Just took another test and i get the results in august! So hopefully it remains negative.*knock on wood*

Offline Lynn K

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  • Posts: 4,263
  • Get tested, get treated, get cured, fight Hep c!
Re: Dont Know what to do! :/
« Reply #14 on: June 24, 2017, 04:14:38 am »
Your dad won't know what types of testing you have had unless you have permitted release to him under HIPPA laws you were given a copy of the law when you visit a health care professional.

https://www.hhs.gov/hipaa/index.html

"Most of us believe that our medical and other health information is private and should be protected, and we want to know who has this information. The Privacy Rule, a Federal law, gives you rights over your health information and sets rules and limits on who can look at and receive your health information. The Privacy Rule applies to all forms of individuals' protected health information, whether electronic, written, or oral. The Security Rule is a Federal law that requires security for health information in electronic form."

Anyway if you have tested not detected for the virus and have no viral load you don't really need additional testing unless you have had a new risk. If you tested not detected in the HCV RNA test you do not have hep c period.

I have no idea why someone who has tested not detected for the virus and has no viral load would need to have a liver ultrasound. You don't have chronic hep c. You do not have hep c as evidenced by your lack of a viral load.

If you were exposed you will test positive for antibodies to the hep c virus for the rest of your life but antibodies are not the virus.

The HCV RNA by PCR test is definitive if that test shows not detected you do not have hep c period. No idea why your doctor would want to do any additional testing for something you do not have.

What kind of doctor are you seeing? Why are you repeating the HCV RNA test? Why are you having an ultrasound for chronic hep c? From what you have said here you do not have hep c only a positive antibody test.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline flashster

  • Member
  • Posts: 8
Re: Dont Know what to do! :/
« Reply #15 on: June 24, 2017, 12:18:34 pm »
I went to a Gastrologist . He said he wanted me to redo the test because it has been a year just to make sure. I haven't been in any risky activities since so i don't see why my status would change. I think he ordered these test because he is trying to find the cause to my itching. Feels like i took 100 blood test over the last couple years and no one can find the problem to the itching.  :-\

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Dont Know what to do! :/
« Reply #16 on: June 24, 2017, 01:04:22 pm »
As for the itching ("pruritus" in doctor-speak), I just looked at the web pages of reputable medical sites for patients. The Mayo Clinic write-up is quite thorough, so you might see if you come across a possible cause that you didn't realize might be relevant and therefore didn't mention to the doctors:
http://www.mayoclinic.org/diseases-conditions/itchy-skin/symptoms-causes/dxc-20262871
The tabs for "Diagnosis & treatment>Diagnosis" and for "Self-management" may also be helpful.

HTH,
Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,263
  • Get tested, get treated, get cured, fight Hep c!
Re: Dont Know what to do! :/
« Reply #17 on: June 24, 2017, 02:15:55 pm »
Ok well then as you tested as not detected for the hep c virus I am assuming that you do not have hepatitis c

congrats
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline flashster

  • Member
  • Posts: 8
Re: Dont Know what to do! :/
« Reply #18 on: August 01, 2017, 03:30:44 pm »
Ok so I did the rna test again and it came back negative! So I don't have hep c . My ultrasound of my liver also  came back normal! However I am still itching and nobody can seem to figure it out !

Offline dragonslayer

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  • Posts: 870
Re: Dont Know what to do! :/
« Reply #19 on: August 01, 2017, 03:45:41 pm »
Ok so I did the rna test again and it came back negative! So I don't have hep c . My ultrasound of my liver also  came back normal! However I am still itching and nobody can seem to figure it out !

Congrats!!  I had itching too, mostly on the tops of my feet and ankles.  I had it before, during, and after treatment, and always thought it was liver related. .However,  what is generally considered to be the cause when it  is liver related is a build up of bilirubin.  This can occur in advanced fibrosis cases..  So, in my case, because all my liver function tests in including bilirubin are normal, and since I never biopsied worse than stage 0-1, my doctor wrote it off as having nothing to do with my liver and that for all intents and purposes, since I was cured of HCV and have no significant liver damage, I can live my life as if I were never infected..   So, then, what has caused the itching?  Damned if I know, but its a relief that its most likely not liver related. .And, over the months since I was cured over 2 years ago, the itching has become very infrequent... Last episode occurred once, about 2 mos ago.  So, not a big problem.

Hope yours gets better and congrats on not having HCV!  Recheck Gnatcatcher's link related to itching.. 
« Last Edit: August 01, 2017, 03:49:11 pm by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

 


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