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Hepatitis C Community
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Avatar universal

Introduction and questions

Greetings,

Here is my story in a nutshell.

In 1988 I was diagnosed in an emergency room with Hep-C (which at the time was still being called non-a non-b from what I remember). There was no followup. In 1996 due to other non-hep non-illness circumstances I quit drinking alltogether.
In 2000 I told a doctor I was seeing that I had once been diagnosed with Hep. He ran a test and it was negative. He told me that my original diagnoses must have been wrong.
In 2002 I became extremely ill and went to my family doctor and she ran some tests and I tested positive for Hep-A (negative for Hep-C).
About 6 months ago I split with my ex-wife and was planning on becoming sexually involved with a new lady in my life. I asked this new person to get an HIV screen and I would do the same so we would know we were both clean.
When I went to get the HIV screen the doctor asked me about Hep and I told her I had once tested positive for A and once for C but was sure I had neither now. She went ahead and tested and now I am showing POSITIVE for HEP-C.
Is it possible that it just somehow didn't show up on the older tests?
Can I have sexual relations with this disease or not? One doctor told me it has to be transmitted by needles and that sex will not cause Hep-C yet a website online said they don't know that for sure.
This is all very new and scary for me and I am unsure how long I have even had this disease. I am also very unsure of how I got it as I have NEVER used intravenous drugs.
19 Responses
Avatar universal
There are at least four scenarios I can think of and *most* of them are good news -- in other words you don't have Hepatitis C.

That said, to be sure, what you want to do is to make sure that you've had what is usually termed a PCR or Viral Load test. If it comes out positive, you have Hep C. If it comes out negative, you don't.

My guess is that some of the tests that showed you had Hep C are *antibody* tests and not tests for the actual virus. If this confuses you, ignore this paragraph and just make sure you had a PCR or Viral load test, as mentioned above. Meanwhile, don't sweat it, cause there may be no reason.

Do let us know how things turn out as we often run an office "pool" on these things and I'm offering 3-1 that you're A-OK :)

-- Jim
Avatar universal
Is this a dream or are my eyes really seeing you!!!!

WELCOME BACK!!!!!!!!!!!!!!!!!!!!!!!!!

YIPEE YIPEE YAHOO!!!

YOU WILL MAKE ALOT OF PEOPLE HAPPY, ME INCLUDED
96938 tn?1189803458
I think you need to throw out the 1988 incident.  I don't think that they would have had the time to run a test confirming hcv in the amount of time that you were in and out of the er.  More likely, ther may have been results to point to it as a possibility.
Break the uncertainty by retesting with a full explanation of the results including which are antibodies or not.  By the way, what happend with the romance interest when you came back hiv negative, but hcv positive?
Avatar universal
Thanks for the info Jim!
I will get back to the doc asap and find out more.
What are the *other* scenarios?

Avatar universal
MH,

Sorry. Just emailed you regarding the email address.

Rage,

Basically you have it or you don't, and at this point a PCR (viral load) test will tell. An antibody test will not tell. As for the fineries, I haven't eaten yet today so not enough glucose in the system to respond :)

-- Jim

Avatar universal
Welcome to the board. It is a miconception that you can only contract Hep C through IV drug use, unfortunately the general public and even many doctors and the CDC fail to mention all the possible modes of transmission. First, I'd do as Jm suggested and find out WHAT Hep C test you had. You need a PCR DNA test to make sure you do or do not have the virus. I imagine you have had one as you went to the doctor with symptoms and they tested you for Hep C so they were looking for it. I am not as optimistic as Jm is, I think you probably do have it and it was missed on the other tests because the older tests only measured down to a certain point and now the tests are much more accurate. The fact that you have had symptoms indicates you should have further evaluation of your liver. Use a earch engine and look for "extra hepatic manifestations" and see if any problems listed there fit your symptoms. I'd see a Heptologist or at least a GI for further hepatic blood work too. If it turns out you do have Hep C you will need to find out which genotype yo have and what your viral load is and get a liver biopsy. Yes there is a REMOTE chance of passing it sexually but it is very small, something like 3% but the risk does exist. However, in a 10 year study of monogamous couples not ONE partner contracted it. Do not have sex that involves blood exchange and you should be ok but she should be made aware of the situation IMO.
I was misdiagnosed too, many people are. I never used IV drugs and I have it. Lots of use are in the same boat.
Do you have a copy of the Hep C test they did? Call the doctor and ask. If the doctor told you you have it, I'd say you probably have it. Start right now and ask for copies of EVERY test that is done on you, keep a file of all your results. Your doctor might already know your genotype so ask about that. Eventually you will know enough to understand them if you don't already.
It is VERY scary at first and your best weapon is education. There is so much to learn and so many differing opinions it is mind boggling so you have to get smart about it so you can make informed decisions and know what questions to ask your doctor and also know about treatment protocols or if it turns out you aren't treating you need to know how to manage your disease so you don't end up with liver damage. Go step by step. Start with confirming if you do have it, then find out which type (genotype) and what your viral load measurement is. All this takes agonizingly long so prepare to be patient. Your best asset is knowledge. You can't make any decisions until you have all the diagnostic facts so try not to panic. I know it's hard but as you learn you will feel more in control. I pray it turns out you are not hep c positive, but if you are it isn't the end of the world even though it feels like it. You have lots of support here on this forum and we ALL know what you are going through. The fact that you don't drink is a BIG positive. Alcohol is like jet fuel on the Hep C fire.Do NOT despair, prepare yourself with information.
Avatar universal

Wow! Thanks for all the information everyone.
I have an appointment with my doctor on Friday for more testing. I can't believe she was so flippant about the whole thing. This is a SERIOUS disease and every doctor I have talked to about it acts like it's no big deal.

--"By the way, what happend with the romance interest when you came back hiv negative, but hcv positive?"--

To answer this question. We spoke a lot about it and have decided we still want to pursue the relationship. Just a little unsure how we are going to handle the sex situation.
Avatar universal
I would love to add something but it seems the guys above have it covered.


All you REALLY have to do right now is so simple
1 Ask the doc for the paperwork stating that you "have" HepC.
  If it is an antibody test it means you were expose but don't necessarily HAVE it.  If it was a PCR test - that means they counted up how many of the virus are in your blood per mil. and that would be the one that would show you EITHER WAY.

2. If they dont have this paperwork - tell 'em you want a PCR.  Any doctor worth his salt WILL know what that is.

3. Although it seems impossible - dont sweat it.  I seriously doubt in 1988 that they did a test in the ER that told you you had it.  In 2005 I had to BEG to be tested - I was told NO several times and said look I have REASON to think I could have it I want to know for sure! On the 3rd try they tested me - and I do and my liver is damaged to stage 3 (not so much healthiness left).  But heck anyone who has been to a DENTIST or a NAIL SALON has a chance of having hepC. Not as high as an IV drug user but face it...most of us have had shots when were were kids........those ARE needles that break the skin after all when you think about it. It wouldn't be IMPOSSIBLE would it?

What I'm trying to say is this - it's important that YOU be proactive and DONT leave it to the doctors.  They will NEVER explain things to you (like the difference between viral load and antibody tests or what PCR means.....) unfortunately they make us learnn on our own.  And this place is just the GREATEST for that - GREATEST!


I wish you the best of luck.
Avatar universal
Welcome rageofcreation. I wish you the best and strongly encourage a PCR.

WOWIE!!!! SO GOOD TO SEE YOU BACK!!!!! OOOOOOO U WERE MISSED!!!
Blessings to you! Mkeela
96938 tn?1189803458
HCV and treatment, plus some advancing years, has taught me that all things in their own time. Good luck in the medical and relational realms.  The chances of hcv transmission is very low, but still a possibility.  When you live, live fully.  When you love, love carefully.  Hope things go well.
Avatar universal
On the grand scheme of illnesses even with some pretty substantial liver damage we aren't a "big deal" because of the slow nature of the virus. Mot have had it decades before they even have one symptom and many never have any symptoms so you can see why the docs dont go into full tilt rush mode. Imagine the things they see. Take it as a good sign. Even when you get a cancer diagnosis you still have to wait for appointments and schedule testing, surgeries, chemo, etc. and they act about the same way. It is a big deal to US because we have it but doctors are trained to react in a more blase fashion so as to not increase your anxiety.
Avatar universal
In 1992, I go a needle stick from trying to move away from a combative patient after giving him a pain shot.  The Hospital where I worked said there were no tests for hep c at that time.  However,  they did start testing for hep c in 1994. But, I did not realize that was the case.  I thought I had been tested for it all along.  I found this out yeserday, when I called the employee health nurse - thinking this is where I could at least begin to determine how long I have had this.  I will never know if I got it from that incident. The patient died after he was transfered to a group home for the mentally retarded - at least that is what the Hospital said - I had a hunch they just didn't want the extra cost.  I wonder how many times they used that excuse.  At this point, I am not going to waste my energy trying to figure out when, where, or how.  I just need to hold on until I get resuls of labs and liver bx (2 areas)
October 19th -  that's gonna be a good day!!yes!
Avatar universal
So much GOOD info, not much left to say. But I love your forum name! This thing can really p!ss you off cant it?
Avatar universal
welcome to our world...this is the forum for sound advice,links to new studys and GREAT support,humor,tragedy & occasional drama-stay tuned & Goodluck...
Avatar universal
While the early tests may have been less sensitive than current, if you showed up undetectable on them then you didn't have it.

The sensitivity only comes in as an issue if you are on treatment and the body is fighting the virus. Then it is possible you may be suppressing to very low level and it may bounce back when you are off treatment.

If you aren't on treatment, I have never heard of anybody having a steady state viral load as low as 2,000 (early sensitivity cutoffs). It would be minimum in the hundreds of thousands.
Avatar universal
It is not uncommon for people who tested with some of the "older" tests to show the virus after they had tested undetectable by a less sensitive test. In fact it has happened to quite a few that post here. Including the poster above. Testing has improved vastly and if you had Hep C and were tested with some of the older tests and showed neg. RETEST to make sure you are clear and aren't living under the false impression you cleared the virus when you did not. Even today some facilities are still using outdated testing methods.
Avatar universal
hi.  sorry you are so down.  but you have not received good news.  I never heard of the magic #615 - all my tests were <50vl, and at under 50 were considered undetectable.  You need to go up top to the newer posts.  there are many people more knowledgeable than i, who can give you good advice.  Is there some g.i. you could get in to see sooner?  have you had a biopsy?  many people have done treatment twice and are now svr, it is not unusual.   go to the top and post a question, and you will get many suggestions and answers and help.  good luck to you james, i wish you the best.
michelle
Avatar universal
Hello Everybody,

I'm new to this message board.

I've been under tratment for HepC for a year.

I have Genotype 1A.

I was taking Peg-Intron and Ribaviron, along with a Multivitamin / Vitamin E / and Omega 3.

My HepC viral load count dramtically decreased to below test levels very quickly. For eight months it was below the "Magic Number" of 615.

In the middle of July of this year, I was to come off the medications. I did. At the end of July, I went in for the regular blood draw. I was still below the undetectable level of 615.

My latest blood work was in late September.

Here is the shocker:
Yesterday, October 12, I found out from the RN at the Hep Clinic that my viral count has exploded. It has increased to above 1,900,000.

To say the least, I'm depressed. The scheduling phone line says it is not scheduling anybody for the Hep Clinic for the next 60 days. I called and left a message with the RN to see if she could schedulr an expedite appointment.


Thank you,
DepressedJames
Avatar universal
james -  that is depressing.  No wonder you chose that name.  There is a lot of good information on this board but like CHellski said, you need to find the top and post a question.  You can cut and paste your whole thread into a current question.  If you cant figure out how to get to the current posts, post back here and we can give you a web address to copy and paste.

I cannot beleive the clinic will not schedule you for 60 days. You must be beside yourself.  Are you done with treatment or still treating?  You can try to post a question to Dr. Cecil.  I never have but it is my understanding that he answers all of them.

http://www.hepatitisdoctor.com/

Chellski -- where have you been?  I have wondered how you were doing post tx.  How is the job and the girls?  I am now 10 weeks post tx -- will get my 3 month post PCR test in two weeks, I guess.  I feel pretty good and sure hope you do too
frijole
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