Does this mean I am becoming "chronic?"

[LollyDoll]

I discovered Hep C almost 2 years ago when I was pregnant with my daughter during the initial bloodwork done at the OB's office.  I was pretty freaked out and went to a GI specialist to have tests done and was told at that time that I wasn't "sick" per se with Hep C but by all tests I was showing positive anitbodies for Hep C.  Since I was pregnant and apparently not sick, I was told not to worry about it.  Even if I was sick there would be no treatment for me while pregnant but I was led to beleive that I was not sick with Hep C and was one of those lucky people who cleared it spontaneously and was going to be fine.  Naturally my concern was long term, as I was about to have a child and enter into a lifelong commitment of responsibility to her, so I asked the docs if I was going to get sick later in life, as I needed to know these things were a possibility to prepare.  The only advice I was given was to enjoy my baby.  They didn't even say come back in a year or anything!  I felt somewhat relieved by info on the internet that supported this because it said 25% of adults will never get sick, etc. etc. and I was glad to be told I was one of them!  But in the back of my mind is this voice telling me how ridiculous that is because I've never had a liver biopsy or treatment, just bloodwork.  So how could that alone tell me I will be fine?  I have been more focused on getting to the 18 month age of my baby (she is almost one now) because that's when they can test her to see if she is with or (hopefully) without Hep C once all my antibodies have finally left her body by that age.  But I've been increasingly aware of some stuff going on with me that's just not right and I'm afraid they could be signs of illness.  Who knows how long ago I was exposed to Hep C and I don't know exactly how I caught it since I am a former IV drug user, but also a RN whose cared for A LOT of people with Hep C in the Medical ICU, and I also used to snort cocaine with different people when out on the town back when I was young and crazy.  So that's a dead end in trying to fgure out a timeline to see if I could be sick after 10 years or so.  I did hear that pregnancy can sometimes worsen illness for some since it's such a stress on the body so maybe that predisposed me to this after having her.  Who knows... but my question here is this- lately I've been having hot flashes and fevers every afternoon and early evening and I am very frequently awakened at night drenched in sweat to the point of needing to change my pajamas, I've had pretty bad headaches that don't go away very easily, I'm ridiculously tired and at times super nauseous and unable to eat well, have terrible aches & pains but the worst is my mental fog and generalized "stupidness" that is not like me and I like to think I was a pretty smart lady but now I even have trouble getting words out sometimes!... this list is pretty long but all the stuff on the list for symptoms of chronic hep c.  I have been so busy raising a baby that I haven't had time to dwell on this physical stuff but now I am to a point where I'm unable to ignore it and am going to go back to the doctor.  I also am on Methadone for the past 5 years so I thought maybe some of the stuff was due to that but after thinking about it, I remembered I never felt bad like this before I had the baby and I was on the methadone then too... Does this sound like what it is like to be getting sick?  How does one person know when the disease is starting to affect them?  Is it a rule that 10 -20 years have to go by after infection before chronic sickness strikes?  Or is it possible to get sick sooner? I guess I am just curious how it was for other people to find out they were sick and how they knew it was time to do something about it.  I am hesitant to go back to the same doctor who told me I was going to be fine and live forever if this turns out to be chronic Hep C, but they are the only liver docs in town!  And I live in South Florida and you would think there's alot of hepatologists but I guess not.  Sorry so long but this is the first time I've written anything and I guess I have a lot of questions rolling around in my head.  Thanks for any input...

[Trinity4]

Wondering if the did a full hep panel.  Chronic hepb maybe?

[LollyDoll]

Well, I finally have an update to post... It took so long to get into see Dr. Schiff at the University of Miami.  I am so happy that I waited and went to him though because I am starting to see I may be one of those weird mystery diagnosis.  I took all my previous bloodworm with me to show the RIBAs, Antibody screens, liver enzymes and what not that were done 2 years ago while I was pregnant.  The first thing Dr. Schiff said to me when I came in the room and sat down was, "you don't have this... you don't have hep c," which I was naturally relieved to hear and somewhat expecting.  Then he explained to me the spontaneous healing that occurs in 15% of cases and I was fortunately in this category while his ARNP was a bit more skeptical and ordered blood work since the stuff they were looking at was 2 years old.  I told him that was wonderful news but I am really here today to get answers why I would be having symptoms of chronic HCV if not cirrhosis.  I told him that ever since I had my baby, and throughout the pregnancy, I have night sweats, itchiness and super itchy hands and feet for a time.  I am also mentally foggy which is a total deficit for me, fatigued and achy just to name a few of the most prominent and bothersome symptoms.  He didn't give me an answer yet but rather ordered a bazillion blood tests to get a better idea.  He asked me to lay down on the exam table and upon palpation of my abdomen; he told his ARNP that it was somewhat enlarged and "sharp" (whatever that means with all this??????????)  So he decided we need to do a liver ultrasound and I went to sit back down across from him.  He noticed as I was talking that I had something red on my chest and he touched it and asked how long I've had it.  I couldn't recall and I told him I've had at least since pregnancy but now I recall it's been before I was even pregnant.  He told me it's called "Spider Angioma" and I have 3 spots on my chest and one on the tip of my nose.  I just thought they were busted blood vessels, which come and go on their own after a few years.  He didn't elaborate on what that meant to me either.  We ruled out TB as a cause of the night sweats and talked more about the symptoms of shortness of breath when I lay down sometimes, fatigue, nausea, etc.  He said again he was pretty sure I didn't have this disease but as I was sitting there talking with him I could see his face changing almost as if a light bulb went off in his head and he was now thinking otherwise.  I was given instructions for the tests and ultrasound, then given both their contact information.  He gave me his email and 2 cell phones, even his home phone # to call if I thought of any other questions!  He is so great I was thinking and totally worth the 3 month wait to get this appointment and worth the 2+ hour drive to Miami from Palm Beach and worth navigating the crazy world of South Florida at this mega-complex doctor office/hospitals/medical school.  If anybody can get to the bottom of this and explain what and why is going on with me, he can!  So I'll wait for the results of everything and go from there.  Not much else I could do anyway, right?  I can't see how it's possible to have symptoms but be spontaneously cleared.  And he said no way to the perimenopause hypothesis.  I can't understand the night sweats and spider angiomas if I cleared it within 6 months of infection.  I know how I got it now though- from a tattoo with a homemade gun & India ink in 1997 when I was STUPID & CRAZY.  I was the 3rd or so person to get a tattoo with the homemade contraption and surely they shared the needle :( but I didn’t know better then so I can't beat myself up over that.  It was 13 years ago and seems to fit well into the timeline for disease progression.  But HOW do I have no virus detected 2 years ago in the blood work, only antibodies, and symptoms now of chronic HCV/cirrhosis?  Like I said, I am starting to think I am one of those weird mystery diagnosis cases that only a magician can solve.  So I am super glad to be his patient now and surely if anyone can help me, he can.  Thanks again to whomever on here suggested I see Dr. Schiff.  I would be nowhere without that suggestion and this forum.  Much appreciated!!!  
Next week I should know more.....................................................

[Bill1954]

“So what your saying is, if that RNA is negative when I get the labs next week, no need to spend the $ at Dr. Schiff's??”

Yes. The only exception to that that I’m aware of would be in the case of recent infection (<26 weeks) when intermittent viremia might be an issue.

--Bill

[LollyDoll]

Yes, I seriously questioned the validity of the HCV antibody, which led me to several re-tests and a RIBA w/reflex x 2.  They were both positive to confirm but I am unsure about the RNA results.  I'll know by next week though :) I'm going to the GI office I went to first thing Monday morning to get the results again.   I found all the other lab work results but not that!   It shows that I also had an "antinuclear antibody, mitochondrial antibody, & actin antibody" which were all negative, which it says would have been positive in 52-85% of patients with chronic active hepatits.  So that's good news, I think :)

As for the answer to the antibody re-infecting- that is fantastic!  No chance in hell of me being exposed again, as that life is over and a new one begun!!!!  So what your saying is, if that RNA is negative when I get the labs next week, no need to spend the $ at Dr. Schiff's??

:) :) :)

[Diane12855]

You can call your old doctor's office and ask them to send you copies of the tests they did. I did that and they didn't give me any trouble about it. Boy! That would save you a lot of money if it turned out you were negative.

[Bill1954]

“So my question is, if the RNA is negative and there is no hep c infection to genotype, does that definitely mean that my immune system fought off the infection and won during the first 6 months after exposure?  Or could it mean other things too? Assuming I was negative at the time, will I stay negative forever or could the virus activate itself and become a problem for me later in life?”

Lolly, if you are antibody positive/RNA negative, it suggests that you resolved your infection via immune response. This occurs in roughly 20% of patients. If this is the scenario, the *only* way this will reoccur will be if you are re-exposed to the virus; presence of antibodies does not lead to any reactivation; at least we’re told it doesn’t.

“I got pregnant in September 2008 and my doctor told me about the Hep C antibody detection at the prenatal check-up.  Is it possible to have been infected/exposed in the beginning of 2008 sometime and then in September & October be only showing antibodies, not virus during the blood tests I had done?  If so, this would explain why the RNA was negative but I don't know if this is the way it works.”

No, if you were somehow exposed in the beginning (Jan, Feb?) of 2008, the virus would have had time to become chronic by September or October, presumably with a viral load in the 10’s, 100’s of thousands to millions.

Lolly, if you’re *really* concerned about all this, ask for the HCV RIBA results. It may be that the antibody test was a false positive all along, and you were never initially exposed to the virus to begin with. A negative RIBA result would confirm this.

Good luck, and let us know what the doctor says—

--Bill

[LollyDoll]

I cannot express how appreciative I am for the time you all have taken to give me these answers.  They are so helpful and I am thoroughly relieved by what I am finding out.  I think I would be still stressing and wondering what to do next but this has provided me with such important advice and for that I am truly grateful!

I now remember that after the RIBA II antibody test, I was sent for an HCV RNA and it was at this point that I was given the clinical advice to, "enjoy your baby."  I didn't know then to ask the specific questions, and they didn't offer to explain it to me either what a negative RNA test would mean for me but I think I was told to check back periodically for blood work.  So my question is, if the RNA is negative and there is no hep c infection to genotype, does that definitely mean that my immune system fought off the infection and won during the first 6 months after exposure?  Or could it mean other things too? Assuming I was negative at the time, will I stay negative forever or could the virus activate itself and become a problem for me later in life?  Why would they tell me to check back for blood work unless the latter is a possibility that it can activate later?  Also, is it possible for one's immune system to overcome the virus on it's own at anytime (such as 10 years later) without the use of medication or is it only possible within the first 6 months after infection? And should someone get a liver biopsy to see extent of liver damage even if RNA is negative?

I still am confused and in contemplation over when I could have possibly been exposed to the virus.  I suddenly remembered something the other day that puts it right in the 10-20 year window that is more of a likelihood than anything else.  I hate to ramble on so long but I would love to hear some feedback as to what seems like to most likely -
I was an IV drug user from 1996 - 1997 but I was also in nursing school at the time in Orlando and was able to buy syringes at any pharmacy in town.  I was extremely cautious at that time in my life and never, ever shared needles, spoons, cotton; NOTHING AT ALL WAS EVER SHARED!  Then in the end of 1997 I went to a long term rehab to start recovery and while I was there, a guy who "said" he was a tattoo-artist made a tattoo gun out of sewing needles, a disassembled bic pen, some sort of motor, and ink from the arts & craft department at Wal-Mart.  I was in such a rebellious and weird place in my life and I stupidly volunteered to get one of his "jailhouse tattoos."  I was not the first person to get a tattoo with his contraption but he said he was using new needles with every person.  But I have no idea if he was dipping it in the same ink as being used on others or if he was even truthful about new needles.  I was young (20 years old) and stupid at the time and thought, I just survived being a heroin addict, I think I will survive a tattoo.  I would not be surprised one bit if that's where the HCV exposure came from and I just realized this just the other day.  That would be 13 years ago and right in the window... Most recently, I relapsed in 2005 and spent the last five years trying to put my life back together again.  Again I was cautious and didn't share anything with anyone up until the very end when I got careless.  I did share a few times a spoon and possibly cotton with someone who could certainly be Hep C positive but never discussed it with me.  Not that you can tell by looking at someone, but the behavior certainly fit the profile.  This all happened pretty recently, in the beginning of 2008 from January - May.  I got pregnant in September 2008 and my doctor told me about the Hep C antibody detection at the prenatal check-up.  Is it possible to have been infected/exposed in the beginning of 2008 sometime and then in September & October be only showing antibodies, not virus during the blood tests I had done?  If so, this would explain why the RNA was negative but I don't know if this is the way it works.  I feel like the more likely scenario is the tattoo back in 97 but since there was no testing I will never know the exact time.  I guess I want to know when I was exposed so badly so that I can put a timeline together in my mind.  I wish I hadn't been so risky and careless with my health but that's one of the things addiction brings with it- a lack of care for anything other than using.  

I suppose none of this matters and I will know soon enough.  If someone has some feedback for the probabilities I would love any insight... :)  

And thanks again for all you caring advice!

[nygirl7]

You really should call the insurance company because I can't remember any of us being called pre-existing in all of the years I've been on here. Hep often takes decades to show up so  basically we are all pre-existing yet they treat us.

[GreatBird]

Honestly, I think you should get copies of all those tests from the GI's office. Sounds to me like they were saying you had no viral load and had successfully fought off the virus which is why you weren't sick and didn't have to treat. Bloodwork alone *can* tell you you're fine if the right tests are run and they are interpreted properly.

Your symptoms sound a lot like perimenopause to me. I had the hot flashes, mental confusion, headaches, etc. If the HCV stuff comes back showing you are clear of the virus, you might have your hormone levels checked.

[Bill1954]

Hi Lolly—

The antibody test performs initial screening, then HCV RIBA often confirms true/false positive exposure; so yes, RIBA is still antibody testing. HCV RNA by PCR is required for diagnosis, since roughly 20% will clear the virus with their own immune response, leaving the patient antibody positive, RNA negative.

Bottom line, PCR is the final, definitive test for active infection. Shiff is one of the top hepatologists in the country, and yup, they get the big $$$. I think my insurance paid $2100 for my initial consult with California Pacific Medical Center a few years back :o).

Good luck and let us know how things go—

Bill

[LollyDoll]

Thanks so much for the comforting advice.  I was able to get an appointment this morning with Dr. Schiff at UM for June 22nd.  Spent the rest of the morning shopping for health insurance online since I don't presently have any and the office visit with Schiff alone is a cool $700.  If my memory serves me correctly, when I first was going to the docs 2 years ago, the blood work was pricey and my insurance then didn't even want to cover it.  Now I have to play the 'pre-existing condition' dance...  Hoping to dig out my records from 2 years ago and refresh my memory of what exactly was done.  I also coincidentally gave blood one week before I found out I was pregnant and was notified by the bloodbank a few months later that I was also testing Hep C + and the Riba confirmatory test is what they use.  That's just for antibody detection right? Or is it to detect virus/genotype???  Well, I'm sure Dr. Schiff will order a slew of stuff to test over on the 22nd so I should just chill out until then :) Thanks again everyone who wrote me, I truly appreciate all your advice.  

[JennyPenny2009]

Hi LollyDoll. Congrats on the the baby girl. They are wonderful aren't they? I had two myself and was infected with hep C the month before I became pregnant with my oldest. Of course I didn't know it at the time as the virus wasn't discovered yet. My girls are mothers themselves now, so this all happened in the "dark ages".

Bill has succinctly told you the things you need to do. I can also tell you that a trip to UMiami, even if it is too far to use as your primary liver doctor, would be worth it to go through the diagnostic process. They are supposedly the best in the country. Dr. Gene Schiff is the head of the hepatology department and the physicians who work with him are top notch.

I can also tell you that how you feel does not usually say anything about how sick you are or what your prognosis is. Everyone reacts differently to their bodies fighting a virus and some people feel sick and others don't.  The other thing I can say is that the most likely way you got hep C is from IV drug use.

While taking care of hep C patients is a risk, it only infects 2% of the healthcare workers who have worked with patients. The number is much much higher for previous drug users. So you can probably safely figure out the length of time you've had the virus. And as NYGirl mentions, the number of years doesn't have a whole lot to do with how sick you are either. The vast majority of patients do quite well and do not progress quickly if at all.

So try and relax and you will get this all taken care of. It does take time and patience though. Good luck to you.

[Bill1954]

If you haven’t already, ask for:

1) HCV RNA test
2) HCV genotype test
3) If positive for HCV RNA, discuss a liver biopsy with the doc.
4) Also if positive, and dependent to some extent on genotype and desire/need, discuss HCV therapy.
5) In the meanwhile, don’t drink alcohol until your HCV status has been confirmed, and long-term management plans have been established.
6) Enjoy your new baby :o)

Oh, and I believe UM has one of the finest hepatology centers in the nation.

--Bill

[Diane12855]

You don't know when hep c is starting to hurt your liver by what you feel, that is why it is so important to get the blood work done.First you need to find out if you have active virus in your blood, what genotype it is, and what your viral load it. Once you know the answers to those questions, you can make wiser choices, but you HAVE to know the answers to these questions. I am kind of surprised that you live in South Florida and can't find a good hepatologist since the state is mostly Baby Boomers and beyond. I'd do some researching and definitely wouldn't go back to the doctor your were talking about.

[nygirl7]

Hi I'm sorry for your predicament but you came to the right place - many of us have been in exactly the same shoes as you so we get all the fear and things you have going on.

First off after six months when your body did not fight the disease off on it's own you already became chronic.  The active stage is in the first six months when you didn't beat it off with your own immune system.

Now the question is since they did so little how do you know you really have the disease and not just the antibodies?  Granted getting it from drug use is about the easiest way possible........but 20% of the people who do get it manage to kill it off on their own without the meds.  Did the doctor ever do any blood work aside from finding the antibodies?

If you can't find a heptologist please try and find a good GI doctor who has had experience and then learn learn learn on your own. Ask all the questions you can think of and read like crazy so that you know everything there is. My own doc had a big practice in NY so I thought he was really good but it turned out by the end of treatment he even admitted I knew much more about it than he did. ThankGod the folks on here helped me and gave me advice and oftentimes I would go to hinm and he thought I was wrong or nuts but I had documentation in hand and he'd say "wow I didn't know that".  It saved my course of treatment and now I've been cured for over three years.

it 'can' take 10 - 20 years to develop problems.  It seems that many of us were diagnosed after 20 years. But just because 20 years goes by doesn't mean you 'have' to have major problems.

You do need to find out what is going on now though.  With a little precious baby you see what it is important to find out if you have to do treatment now or if you have time to wait until she's older and in school so you might have more time to rest if you need to.  Treatment is tough for most of us but it is doable too if that makes sense. I treated for 72 weeks and only missed 3 days of work (single mom I need my job). Shoot I"ve taken three days already off this year and I'm not even sick.  It's amazing what willpower and determination can do.

Try to get a copy of all of the test results that you had done back then and post them up in here someone will read them and tell you whats what.

And remember most people die with - not from Hepc.  That's a bit of good news at least to remember as you start down the road.

GOOD LUCK!
Debby