Test question

[valger]

Hi, I just had a question about my tests.  In the beginning of 2002, I had tested positive for HepC after some liver enzymes were mildly elevated.  The test said that it was a HCV RNA by PCR test.  However, the doctor sent me on to a specialist, and he said that this particular lab had been having some false positives.  At the specialist, he did a qualitative, and a quantitative, and those were both negative.  At the same time, I also had a quantitative done at another doctor's office, and that came out negative (not detected).  Just to be sure, the specialist did a Heptimax on me, which came out negative.  At that point, the specialist wrote Negative for HepC, increase in enzymes due to fatty liver.  I also had a sonogram that showed fatty infiltration of the liver.  I am overweight, but I don't smoke or drink, and have not ever done drugs.  I had further blood tests done recently, not any testing for Hep, but for the liver enzymes, which came back normal.  Do you think this safely means I don't have HepC?  I spoke with the specialist the other day, and he said to send him all the paperwork, and he will call me.  The thing is, right when my Heptimax came back negative, that doctor had some problems with the practice he was in, and he left for another practice.  So, I never really talked to him, but I talked to his nurse, and she told me what he had said.  I felt very comfortable with this, and had gone a year, and then recently went back to another doctor for my follow-up, and I couldn't really understand what he was telling me.  Thank you for any help!!  Valerie

[Xenigma]

Hi Susan,
Your decision to treat or not to treat at this time is yours.
It is an individual decision for all but I just want to add that Chevy was right when she said it will be easier now, before the baby arrives or when he/she is an infant. I have a 20 year old and a 16 year old and thinking back when they were young (and the years following when they were growing up), I couldn't imagine taking care of them and their needs the way I feel now (and I'm not on treatment [yet] but feel about 80 years old) If you have a nanny that would be different.  Everyone reacts differently to the sides of treatment but I do believe you should prepare for the worst and hope for the best.  Treating the virus is scary, not treating the virus is scary.  You, or anyone else for that matter, shouldn't feel you have to justify your decision.  With all the **** this board has been offering lately, it still has good info. Until my appt. with the Hep. specialist (grrr....4 more months) I am still waiting and reading and hoping for an easier cure.
I found this story interesting.....

http://www.biospace.com/ccis/news_story.cfm
StoryID=15355820&full=1

enigma

[Tallblonde]

For the record, this is what Revenire posted on January 22, 2004 to me:

"There was a time when I said TREAT to anyone and everyone that came here asking but after reading GI.PA's reasoning, among others, I've changed my mind.  I think given your biopsy score you have plenty of time. If mine was what yours was I might just wait myself.  I'm jealous...not really :)

Scott

[Tallblonde]

G--Thanks for your very well-written comments above.  It motivated me to go back into my files (I cut/paste/print many of these posts) to find something that GI.PA wrote back on January 14th.  In fact, she addressed this particular response to Revenire.  I thought it might be worth repeating for the benefit of those who are weighing their options about treating or not treating.  Here is what she wrote verbatim (the typos are hers, not mine):

"Revenire, I disagree, the liver biopsy (looked at clinically with the aprox exposure point) is extreamly good at projecting progression, and therefore help one determine the aggressiveness level for treatment.

*Long term studies have looked at progression rates in Hep C using serial liver biopsies.  Patient can ususally be catorgized into three groups:
-Slow progressors (may take 4-5 decades) to ever reach a state where liver complications/liver damage may play a role in their overall health.
-Moderate progressors (may take around 2-3 decades)
-Fast progressors (may only take a decade or so)

Now, in the above case, the approx date of infection is over 10 years ago.  A biopsy of such mild grade inflammation and 0-1 fibrosis would put the patient in the slow progressor catagory or the moderate progressor catagory.  There is virtually no chance this patient would be a fast progressor with such minimal damage after more than 10 years.  You can note that in both of these groups, we are talking about decades of progression, veses years.  A repeat biopy in three years, and maybe again in six years would help to clarify exactly which group the patient is in, and how aggressive one would need to be.

*Secondly, in the above example, the genotype is 1.  At best we are starting with a 50% success rate (SVR).  This treatment is no cake-walk, and I would argue in the above patient, the risk of serious side effects outweighs the chance of Hep C ever becoming a issue down the road.  So, I do not have a "knee jerk" reaction to treat all with Hep C.  This ignores the potential toxicity of the meds involved and the benign nature of the disease 80% of the time.

*3 You will note in the above case, her viral load has not changed significantly between now and 2001.  Are lower viral loads easier to treat, yes (a viral load of 100,000 is easier to treat than a viral load of 28 million).  Is there any evidence that viral load changes significantly over time once the infection is chronic for several years?  No.  Would I want to treat the above patient before stage 3-4 fibrosis occurs, Yes...but I would argue that it is at least 10-15 years down the road.

So, in summary..what would I do with this patient?  I would leave the informed decision to treat/not treat up to the patient.  If no treatment was pursued right now, I would see the patient yearly and re-assess lab (PCR, liver enzymes..).  I would suggest repeat liver biopsy in three years.  I would not try to "sell" treatment as the only way to go.  To do so would be ignoring the toxicity opf the drugs and the slow nature of progression with her disease."

GI.PA
Erin

[Sioux]

I just hought I send a cyber hug to all (minus one) And you know who that may be .......

[cuteus]

what a nightmare of incompetence by so many drs.!
  don't give up and ask, no, demand clear answers from that specialist,  You have the right to peace of mind. and it is his duty to have an informed patient as a partner on her way to good health.   Very wise to get copies of ALL bloodwork from everybody.  Keep your own copies.

I have blood work from 1991.
   Have patience, till you meet with him, and write down all questions and counter questions depending on one answer or the other. This is your chance to receive the attention that has been lacking so far.  Don't  act peevishly, they tend to patronize, and you are not paying for that.   Keep us posted and GL to you

[cuteus]

You've had 3 tests after that first one.  all negative. Why is the first positive one v THREE negatives of more weigh? I don't understand why you keep torturing yourself.  Maybe if you buy your own hcv test online and do it yourself, your fear will ease?

I am sorry, I don't see your issue as been HCV.

[twotells]

Val: You need to follow through with your specialist as you plan to do.  I'm assuming you are talking about a licenced physician qualified in a specialty such as Gastroenterology or Hepatology.  People who offer advice who are not so qualified can be very dangerous.  Anybody can make a guess based on your post.

It appears that our experience with Thanbey here has occurred elsewhere- no big surprise, is it?  I remember her stating that physicians 'just love to belittle her at conferences.'  Remember that 'red flag' stated here on this forum?  Is it any wonder why qualified medical specialists would belittle Thanbey at conferences?

Dave

[valger]

Hi, and thanks for the response!  Well, I guess I'm just still learning all this stuff about the testing, and it's very confusing.  BUT, from what I've learned that first test the HCV RNA by PCR is very accurate, and really the follow-ups involved one qualitative, which I guess is as good as that one, but the quantitatives don't really matter that much, do they?  I had one quantitative with that one qualitative, and then the negative Heptimax, which is also just a quantitative if I have my information correct.  That could just mean that my virus level was undetectable, but the Heptimax does go down to a level of '5' so I guess that would be unusual without treatment.  And, then I had that other negative quantitative at that doctors office when they drew blood just to confirm it.  And, to add to the confusion, THAT doctor called me and said, ok, yes it's positive, but you have a low viral load.  Well, at that point I definitely thought I was positive, because this was the second one.  So, just by chance, I picked up my papers from that doctor office and took them to the specialist, and didn't even look at them since I probably wouldn't know what they meant, and then when the specialist looked at them, he said, no, the other doctor read it wrong, and that it meant negative.  He said that it can be hard to understand for a doctor that is not a specialist.  It just said <600, which he took to mean a low viral load, and instead of meaning undetected.  Also, I don't even know how he could tell me it was positive, he didn't even do a qual.  So, I'm just babbling on here, sorry, but as you can see, this has been so frustrating, just one error after another, and I don't know what to believe.  And, I was trying today to gather my records so I can send them to the specialist that saw me in the first place, and I called the office, and they can't find my records.  She said she has to call each lab and get the results, which won't be till next week now.  So, that's why I worry about that first positive, because I don't know if the subsequent tests were the right ones.  Thanks!  Val

[cuteus]

That is sad when a person can't ask and get answers from a medical professional.
It can be dangerous when that person searches for those answers from the unlicensed to practice.  
You better start asking and demanding answers from your providers and matching the info with your own research.
Medical advice should not be substituted in forums like this, please read the disclaimer MED Help recently added to this forum.  It should tell you what has been happening here. GL to you

[valger]

I know, it's been unbelievable.  It's hard to even explain to anyone~~and so it makes it really hard to start all over with a new doctor, and that's what I had to do.  But, when he didn't help at all, and just made things worse, was when I decided to call the specialist that handled me originally who is now in Houston.  I don't know weather to feel pretty good about my test results or not, though.  I just need one place to act competent, and put some effort into it.  It's like, I'm doing all the research, I know more than they do.  That was the problem with this other doctor, he was sitting there telling me stuff about what to eat for a fatty liver, just kind of mumbling on, and actually he wasn't even talking about the fatty liver, he was talking about my cholesterol (which was 204) and wouldn't get off it.  I kept trying to ask about the HepC thing, and then he finally just kept mumbling and walked out, and I couldn't very well keep talking about something so personal with the door open, and people looking at me.  And, then some lady comes up to him with a file, and he gave his attention to her, it really made me mad.  Anyway, you said before that I should be pretty comfortable with the qualitative and quantitiave being negative, right?  Just so I can get through this next week while I wait for the specialist to call!  Thanks for the reassurance, I know I probably sound pathetic.  Thanks again, Val

[oldhippiechick67]

Well, I read that even Heptimax, which is very sensitive, is the most accurate.  And 3 negatives should put your mind at rest.  You could ask for a liver biopsy just to be REALLY sure, because even Heptimax cannot detect the virus in the - well here, I will paste the article:
RNA/PCR QUANTITATIVE TEST RANGE - this varies from lab to lab
200,000 to 1,000, 000 low
1,000,000 to 5,000,000 medium
5,000,000 to 25, 000,000 high
25,000, 000 and up very high

Viral loads may differ with differing genotypes*. Being PCR negative does not necessarily mean that HCV has disappeared completely - cells present in the liver cells and in certain white blood cells(in the lymphatic system) may not be detected.
Levels fluctuate in the blood and do not correlate with severety of symptoms.  It is recommended that patients take into account their own assessment of symptomology and severity and do not rely on these tests for convelesence or absolute trust in these tests.  *It is not yet known whether or not it is capable of detecting ALL quasi species variations (or genotypes not yet identified, etc.).
RNA/PCR QUALITATIVE TEST This test can detect activally replicating HCV cells but is not sensitive enough to determine viral loads if the cell count is under a certain number.  Its value is that it can detect HCV before antibodies develop -- which usually takes about 6 weeks.
A liver biopsy can detect chronic hepatitis, inflammation and scarring which an ultrasound cant.

[valger]

Thanks for that info!!  I suppose I should try to put my mind at rest, but I know that I still have an issue with the fatty liver.  I am just really hoping that I don't have that combined with HepC.  I guess I should feel good that those second, and third tests came out negative, it just still makes me wonder how it could possibly take place in a lab, that my test would read positive if it wasn't.  It seems like a mistake like that couldn't be made.  And, I read where that happens often with the antibody test, but very rarely with the PCR test.  But, then still, it dosen't make sense anyway if my second and third tests were negative, so go figure.  Also, the specialist said that someone might be undetected if they had never had treatment, but it's very unusual for someone to be HCV positive, and have no viral load at all if they haven't treated yet.  I guess I also take into account my low risk factor, I really don't have any of the usual risky things associated with getting HepC.  I know that lots of people don't know where they got it, but I have just been really careful my whole life (with the exception of stupid teenage things) but even those were pretty innocent.  If I got it from stuff like I did, then everyone would have it.  The only other thing I can think of is the dentist, which I always was careful that they used sterile practices, and a couple of times I had my ears pierced, but I know that is a low risk, especially if you insist on sterility.  My husband has no problems, since they routinely check for HepC for insurance purposes, and he came out fine.  Also, my two older kids have given blood at school, and never heard anything back, and I think they would have if anything came out positive on the test.   I was actually wondering about that, if they put their names into some kind of a database, I wonder if it would come up that I was HepC positive from that first test, and they would just discard their blood.  I wonder if that is what they routinely do with first degree relatives.  Anyway, thanks again for all the information, everything I learn helps.  Thanks for the reassurance also, it really helps me to feel alot better.  Good luck to you guys too, Val

[GwithHepC]

It seems I broke the thread I started above.  I'm Sorry everyone.  

OHC, I just wanted to give you a link that might help answer your questions about insurance.  I determined from your web site that you live in Arizona, and since insurance seems to be mostly regulated by the state, you may want to anonymously call the <A href="http://www.id.state.az.us/index.html">Arizona Department of Insurance</a> and ask about your rights, etc.  The web site also looks like it might be informative.

Good luck!

G

[valger]

Hi Thanbey, and thanks so much for the advice!  As I've said before, I find out more from you than I do from my doctor!  Have you ever thought of opening your own practice??  
   So, you do think I dodged a bullet on the HepC?  Does it sound like that because of the follow-up tests?  I had that one positive HCV RNA by PCR, and then the subsequent negatives, but I know that even the Heptimax is just a quantitative test, right?  So, does that count?  I certainly hope I've dodged it since I do have so many other issues with my liver.  I think the question is also what to do for fatty liver, I have heard that too much weight loss to quick can make it worse.  So, I am trying to eat sensibly, and be patient.  Also, I never touch alcohol or smoke at all.  I do need to start exercising, though.  I have been taking 800 I.U. of the natural vitamin E each day, which I also heard helps.  But, anyway, you do think this sounds like Negative when it comes to the HepC?  It's hard, cause you never know what the labs did, maybe they ran an antibody test first, and then the PCR, but I called the dr's office, and they said they just had down that the PCR was ordered, but I guess you never know what the lab does.  She did say that there are some false postives sometimes.  I want you to know how much I really, really appreciate your help, and thank you so much!!  Sincerely, Val

[thanbey]

You weight is a serious concern. Fatty liver can lead to cirrhosis, so you have two conditions at once that can potentially adversly affect the health of your liver, obesity, fatty liver. Of the two, overweight (obesity) is  the most immediate concern as it is the major cause of the other.  Two birds with one stone, as it were.

The game plan for you is to prevent any progression of liver disease to cirrhosis and to prevent any other problems that are caused by weight. This is no less of a serious threat to your liver than hepatitis C would be and it needs to be treated as such. Do not allow your doctor to dismiss this with lightweight advise.

My advice? Talk to your primary care provider about weight loss strategies and possibly consult with a bariatric doctor who can offer you some options.

You dodged a bullet, thank goodness, in that you do not have the comorbidity of hepatitis C, but you are not off the hook as to the need for attention to the health of your liver.

I hope this helps,

thanbey

<a href="http://www.hcop.org/hcvinfo/category/index.cfm?categoryid=36">more on fatty liver disease</a>

http://www.hcop.org/hcvinfo/category/index.cfm?categoryid=36

[cuteus]

I emailed Dr Cecil yesterday, asking if he knew of anyone local that is working on the same premise he is.
Maybe I will make that appt with Dr. Dieterich since you and my PCP both mentioned him the same  day, and pay out of pocket for the visit.
I wish he would be willing to join my health plan, the rest of the hospital is.  I figure I would have 2 1/2 months of meds left after the 48wk, so I have some time.  I was going to offer it to someone...but I might need it since i will be on my own on this one, it seems.
Why is 50% chance good enough for these people? It was enough for me at the begining of tx because that is all that was offered, but as time moves on and theories and models are thrown about, you want more. You want to be able to say if it doesn't work; I gave it all I could.

be well

[cuteus]

If you had a qualitative and quantitave read negative.  That is it, You are negative.
You really should not leave a doctor's office with questions.  If what he says is not clear, demand that he speak to you in "layman" language. If, after you leave the office you have more concerns, call his office for clarification. It is their resposibility to make sure the patient understand their condition.  Good luck to you.