new member- HCV questions

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rae599
Regular Member


Date Joined May 2007
Total Posts : 29
   Posted 7/21/2008 6:49 AM (GMT -7)   
Hi, I'm new to this whole hepatitis thing and I feel pretty confused.
 
I have been feeling tired for a few months now and having similar symptoms to last year when I was told I had Lyme disease. I have been having 'brain fog', memory problems, exhaustion and just overall not feeling like myself. I originally thought that perhaps the Lyme had come back but all of my tests kept coming back clean. Last Wednesday I was told that my hepatitis C screening had come back positive. I went to a GI the next day to have more specific testing done and should have those results by the end of the week.
 
I just have a few questions - I was so surprised to have the HCV come back positive because I have no idea where/ when I would have gotten it (I know a decent amount about it, I wrote a master's degree thesis on Hepatitis E and included an overview about the other hepatitis types). Has anyone had any luck being able to trace the orgin of their HCV to things other than IV drug use or blood transfusions?
 
I also wonder if it is possible that my symptoms can be completely caused by HCV so that maybe I never had Lyme's disease at all.
 
It also seems strange because I had general blood work done in April which included liver function tests that all came back normal. Wouldn't something have been elevated even if the HCV has been dormant?
 
My last (kind of weird) question is about a specific symptom I've been having - no matter how much water I drink my urine has a persistently strong ammonia scent to it (I don't have a UTI, no symptoms and I've been tested for it), has anyone else had this experience?
 
Thanks for all of your help.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/21/2008 11:25 AM (GMT -7)   

Rae599, welcome to the forum!  I'm sorry you are faced with this disease.  Do you have any piercings or tatoos?  Those are other means of transmission.  Generally it takes 20-30 years for symptoms to appear after the initial exposure.  Can you think back to any event that could have exposed you to hep C?  It has been known to be transmitted sexually, but it is very rare.  It can be transmitted from an HCV infected mother to child at birth.  There are some cases where there is just no explanation.

Have you had a biopsy yet?  That is the best way to determine if the disease is chronic or chronic active.  Chronic would mean that you have been exposed to it in the past, but your immune system threw it off.  Chronic active means that it is still present and actively destroying your liver.

Yes, you could have been having symptoms of hep C at the time you thought you had Lyme disease, but I believe that they have a specific test for Lyme disease, do they not?

Usually the main symptom of HCV is unexplained fatigue.  I was diagnosed with hep C in '93, and the only times I've had strong smelling urine is when I don't drink enough water.  So you may want to get a urine test.

Is the specialist you are following up with a hepatologist?

We have some very supportive and knowledgeable people here, so I hope you will follow up on your diagnosis and keep posting.

Hugs,

Connie


CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 7/21/2008 3:32 PM (GMT -7)   

Dear Hep 93,

I'm not quite sure you got your facts right about stages of Hep C

  • acute hepatitis - lasting less than six months - this is when a person throws it off (quite rare)
  • chronic hepatitis - lasting longer than six months - usually forever
  • Chronic active - the virus is actively affecting your liver - like herpes it can be chronic but not always active. This is why some poeple can become ill quickly while others may take 20 years before feeling symptoms.
  • As for the urine smell - it is also a dark colour?

    Again, a person can have perfectly normal LFTs and severe advanced liver disease. Only a biopsy will show how advanced the liver disease has progressed. This is totaly different from stages of Hep C.

    Hope this helps.

     

    Cary  


    rae599
    Regular Member


    Date Joined May 2007
    Total Posts : 29
       Posted 7/21/2008 5:24 PM (GMT -7)   
    Hi, thanks Hep93 and Cary for your replies!

    I am only 26; the only things I can even think of were that I was born 3 months prematurely and I had a congenital heart defect that was fixed through surgery at 10 days old. It was, as heart surgeries go, fairly minor and the repair was done through my ribs so I do not think I received any blood transfusions. I do not have any tattoos but I did have a belly button piercing years ago when I was 18. I had a knee surgery nearly 5 years ago but again, did not receive blood. I really doubt that the instruments were inadequately sanitized with either the piercing nor knee surgery. It just frustrates me that I won't know when/ where/ how I got it...

    I have not yet had a biopsy, just more blood work. I think my GI is wanting to see what the blood work shows before putting me through a biopsy, she seems hopeful that since I am young that I could have just had acute hepatitis and am done with it but still have antibodies.

    My urine is frequently a dark color but it is sometimes clear/ cloudy as well (although much less often than it is dark). I realize that it's more likely that I'm dehydrated so I've been trying to drink more water but it's tough to make yourself drink when you're not thirsty. It just seems questionable that no matter how much water I seem to drink it still has the strong ammonia smell.

    Pink Grandma
    Veteran Member


    Date Joined Nov 2006
    Total Posts : 2445
       Posted 7/21/2008 6:17 PM (GMT -7)   
    Hello Rae599 and welcome to HealingWell,

    Sorry you had to come to us but you did find the best health forum on the net. Our members are unsurpassed for compassion and education. Whether it be by schooling or life's lessons. But then again I am very partial.

    Connie and Cary have already given you some good advice. I can't add anything to their posts just wanted to say welcome aboard.

    Good luck........
    Pink Grandma
    Forum moderator-Hepatitis

    When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


    hep93
    Elite Member


    Date Joined Jul 2005
    Total Posts : 12014
       Posted 7/21/2008 9:03 PM (GMT -7)   

    Cary, I did not address acute hepatitis.  However, I was told that chronic hepatitis is when you have the antibiody for it.  If one has acute hepatitis and the immune system throws it off, wouldn't that person still chronically test positive for hep C?  I apparently contracted hep B (probably around the same time as I got hep C) and never even knew I had it until blood tests were done.  I was told that I have the antibodies for it, meaning I had it but can never get it again or give it to anyone else.  However, the fact that I will always test positive for it would seem to imply that it is chronic.  That is where I was coming from, and based on facts I obtained at the time of diagnosis.  That was in '93 and much has changed since then, including the jargon.  However, I maintain that acute hep B or C that is thrown off will still show up in blood work, and such a person can not donate blood.  If I am misinformed about this, please reference credible material to the contrary.  I certainly would never want to mislead anyone.

    I did mention a biopsy being the only way to really determine the extent of liver damage.  However, if there is a cancerous liver tumor, the diagnosis can be obtained through a specific liver study with contrast via a CT scan, and/or an MRI with gadalinium.  I had many of these when I was first diagnosed with liver cancer, and continue to have them about every 3 mos.  I only had a biopsy done again, of the left lobe only, at the time the right lobe was removed.  That biopsy revealed mild cirrhosis which was not seen with the '93 biopsy or in any of the scans or blood work.  You are correct that liver enzymes can be normal or only slightly elevated and there still be liver disease.  My levels, while usually chronically elevated somewhat, have never been alarmingly high--in fact, there are times when all but one have been normal.  Also, my alpha fetoprotein, a tumor marker, has never been very high although my cancerous tumor was immense.

    Rae, there is another new member whose doctor is waiting to see what her bloodwork is like in 2 weeks before deciding what to do next.  It is possible that you were contaminated during your heart surgery, even if you did not have a transfusion.  Also, tatoo and piercing instruments may be "sterilized" in alcohol or other solutions, but if they are not autoclaved they will not be free from any possible hepatitis virus or HIV.  In the end, it doesn't matter so much how you contracted it (if you actually have), but that you do and must make some decisions about your health and treatment options.  Prior to 1992, there were no specific tests for hep C.

    Hugs,

    Connie


    Post Edited (hep93) : 7/21/2008 10:07:56 PM (GMT-6)


    JohnCT
    Regular Member


    Date Joined Mar 2008
    Total Posts : 202
       Posted 7/21/2008 9:34 PM (GMT -7)   
    Hi rae599,

    Welcome to the forum. I hope that you find us helpful. As a Hep A, B, and C'er - now ESLD - finding kindred spirits certainly has been a blessing to me. I'm sorry that you need to address Liver Disease and hope that it will go well for you.

    I just want to add a fact that I was surprised by. The CDC (cdc.gov) now states that nasal use of drugs is a common way to acquire Hep C, stating that "sharing straws when cocaine is being snorted" is a known risk. Evidently, snorting cocaine (or ?) can cause nasal bleeding; the nasal mucus with blood traces can be passed to the straw; the next person using the straw may have a minor nasal irritation (bleeding) and the Hep C may be passed from person to person.

    That was a new fact to me, having not researched in some years. FWIW (For What it's Worth). The CDC also states that "sharing toothbrushes or razors" is a potential risk.

    Be well, John
    I have to get up the creek! Now where's that paddle?
    Mind-fogged again.


    rae599
    Regular Member


    Date Joined May 2007
    Total Posts : 29
       Posted 7/22/2008 6:19 AM (GMT -7)   

    Thanks again for your replies!

    I have just felt so taken aback by having the positive antibody test that my first instinct is to try to figure out how I got HCV. I guess I'll just have to make peace with the fact that I won't be able to know for sure, as frustrating as that is! I'm really trying not to let it get me down, especially considering I don't even know if I have an active infection yet. It would be nice to have a diagnosis and reason for all the fatigue and cognitive issues I've been experiencing though I'm not sure this is any better than Lyme's or MS or lupus (all have been ruled out so far).

    John, I read those on the CDC website too! I can definitely rule out having gotten it from snorting drugs of any kind; I've always been afraid of that whole thing (my mom had some issues with drugs when she was young, thankfully she got all of that straightened out before she had kids but I guess it's possible she could have contracted hepatitis from that time in her life). I don't know if either of my parents have ever been tested for hepC, although my dad had hepB in the spring of 1984 (he's a dentist and apparently got it from one of his patients) so we did all have to get shots for that. How silly I would feel if it turned out that I got it from a toothbrush or razor! It seems ridiculous but, unfortunately, I'm sure it's happened to more than one person.


    CaryF
    Veteran Member


    Date Joined Nov 2007
    Total Posts : 505
       Posted 7/22/2008 12:07 PM (GMT -7)   
    Rae,

    Drink water like you're on a desert island - try for a gallon a day & then 2 - I'm serious!

    Your tests will tell if you threw off the virus or not. Even if you did - you will always have anti-biodies as that's what threw it off in the 1st place.

    Your tests wll give a lot more info. BTW 20%-30% of all people with Hep C have no idea where they got it. You could have gotten it from putting on a bandaid for someone else.

    Let us know how your results comes back.

    Best,
    Cary

    frustrated_n_wv
    Regular Member


    Date Joined Aug 2006
    Total Posts : 469
       Posted 7/22/2008 1:29 PM (GMT -7)   
    rae599

    Just a quick note to welcome you to the forum. I know learning about having any kind of liver disease is confusing, devasting, and frustating. Things will be clearer once you get the results of all your tests.

    Good luck

    Lucy

    Butterflythree
    Veteran Member


    Date Joined Oct 2007
    Total Posts : 954
       Posted 7/22/2008 4:13 PM (GMT -7)   
    Hi Rae, I just wanted to welcome you to the forum. I am sorry that you have contacted this horrible disease. You have come to a good place for support. As you can see there are many people here that have a lot of knowledge and are always willing to listen.

    Take Care!
    Butterflythree
     
    There is always hope!


    rae599
    Regular Member


    Date Joined May 2007
    Total Posts : 29
       Posted 7/28/2008 12:04 PM (GMT -7)   

    I just got my blood work results and apparently there is no measurable hepatitis C in my blood. My liver and kidney function are fine, I'm not anemic and I don't have celiac.

    So I guess I was worried for nothing? I guess it just means I was exposed to HCV at some point in life but cleared it. I didn't get a chance to talk to my GI doctor but the receptionist said she didn't think I needed to come back in. I told her to call me if my doctor wanted me to come back for follow up.

    Should I still be tested routinely or anything? This means that I can never give blood, correct?

    Thanks to everyone for your support! I appreciate it very much and I wish the best for you all.


    hep93
    Elite Member


    Date Joined Jul 2005
    Total Posts : 12014
       Posted 7/28/2008 8:21 PM (GMT -7)   
    Rae, that is GREAT news!  To be on the safe side, I think it would be prudent to have blood work done again in 6 mos.  Make sure that a liver panel and a HCV test is done.  Your primary care doctor can do this.
     
    As for giving blood, if you have totally cleared the virus you might be able to give blood.  However, it sounds like you have the antibody.  To be on the safe side, a blood bank probably would not allow you to give blood.  You can call your local blood bank and ask about this.
     
    It's wonderful that you don't have this disease.  It's no fun, for sure. 
     
    Hugs,
    Connie
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