Hep C Discussion Forum

shotgungirl · Member

RE: New here. Emotion overload!

Loopy Lisa · Guru

Sorry to hear you haven't clearned spontaniously, but like Mallani said, it is very treatable. x

mallani · Guru

Hi Kayla,

I agree with Jill, at your age HepC is very treatable, so don't be anxious. Your Viral Load is 1.02 million, which is low-moderate. The 6.01 is the same figure in log. units, which has become a bit out-dated.

As your Genotype was done with the LIPA assay, it was probably done using Version 2. This gives rise to some unusual reporting, as it is very accurate and has found mistakes in the older assays. You are almost certainly Genotype 1b, but LIPA calls 10% of Geno 1's 1b/a. The A could also mean the PCR test and could mean Amplification. It doesn't matter, but it's just something else to confuse us. You've got every chance of clearing the virus, and let us know what your Doctor thinks. Cheers.

shotgungirl · Member

Hi everybody. Just wanted to check back in, I got some labs back from the hospital this week. So, here's what I got back!

HCV QUANTITATIVE RNA BY PCR

	Normal	Abnormal	Units	Ref. Range
XHCV C PCR		1020000 H	IU/mL	[<43]
XHCV L PCR		6.01 H	see fn	[<1.63]

Units: LogIU/mL

Please note: the guidelines for the use of new anti-HCV therapies (boceprevir and telaprevir) recommend using a test method that detects plasma viral nucleic acid levels as low as 10 IU/ml. This assay has a lower Limit of Detection of 7.1 IU/ml for genotype 1 and conforms to the recommendation. Quantitation of plasma HCV nucleic acid levels below 43 IU/ml (the Lower Limit of Quantitation for this test) may not be linear, and in this circumstance are reported as "<43 IU/mL HCV RNA Detected".

This test was performed using the COBAS (R) AmpliPrep / COBAS (R) TaqMan (R) HCV.

HEP C GENOTYPE BY LIPA Type 1B A

This test was developed and validated for clinical use by Regional Medical Lab. It has not been cleared or approved by the U.S. Food and Drug Administration. The FDA has determined such clearance or approval is not necessary. Performance characteristics refer to the analytical performance of the test.

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And now I'm just waiting....about 5 weeks until I get to meet with a GI Specialist.

I'm assuming on my genotype, it is 1B? I'm not really sure what the 'A' is doing there...

Anything you all can tell me about these results would be awesome, I'm just sitting here nail-biting while I wait!

Cinnamon Girl · Guru

Hi Kayla, I`m glad you`ve got some more information now. So these results show that you do have an active infection, with a viral load of 1,020,000, which is actually quite low. I would also take it that you have genotype 1b, and am not sure what the `A` indicates either. Anyway that fact that you have genotype 1 means that if you were to proceed with treatment in the near future you would need to do one of the `triple therapies`, which would be interferon and ribavirin plus a protease inhibitor which would be either victrelis (boceprevir) or incivek (telaprevir).

Your GI specialist will run through your options with you and you will probably have further tests done to find out more about the health of your liver. You`re young so it`s likely that your liver is still in good shape and you`ll have time to wait for the new drug treatments to be available, but whatever happens you will be able to treat this disease and clear it, so try not to worry unduly!

Thanks for the update, keep us posted! smile

daddysgirl · Member

Hi Kayla, welcome to the forum, the people here are so nice and caring, they can help you get the info you need about this disease. I am new here too, I was just diagnosed not a week ago, I don't even know my geno type or vl load yet. My Gp didn't even call me in his office, I called them and a nurse told me. So much for compassion. You are very young and you have your whole life ahead of you, it will be okay. I know how you must feel right now, but everyone here is there for you, love and prayers

Cinnamon Girl · Guru

Good to hear this, Kayla, it gets easier as you go along, we`ve all been there!

Best of luck with your results, let us know how it turns out. Waiting is the name of the game, unfortunately! smile

shotgungirl · Member

Thanks everyone!

Today I had blood drawn for my viral load and my genotype. The woman said it will take a few weeks before those results come back. So now just some more waiting!

Finding forums like this and reading up on Hep C has been helping a lot, though! I have noticed that I now can go several hours and "forget" about having it. Even though its just a few hours, its a good start!

Loopy Lisa · Guru

Hi Kayla,

Being young and female it is possible that you have cured yourself. If not, well I promise you it is not the end of the world. Everyone is shocked, worried and scared when they have their first test and find they have positive antibodies. But believe it or not, after a little while it just becomes a fact and doesn't really become your every thought. Of course, we are all aware to be careful with our blood if we cut ourselves, and take care of our livers, but the fear goes with knowlegde. It can be tough reading about people that don't cure, side effects of treatment and the suffereing some people go through. But just remember you are unique and everyone reacts different to treatment.

It doesn't matter how we are infected, just that we know and can look after ourselves. I know waiting is the hardest part, but either way, you are in a very good position as you have no liver damage.

Stay strong. x

Cinnamon Girl · Guru

Hi Kayla, thanks for the update. I haven`t come across that test before either!

It really does vary whether people get any symptoms of ill health when initially infected with Hep C. The main thing now is that you will be getting further tests done to find out whether your immune system has already cleared the virus or whether you will need treatment.

Keep us updated, and best of luck! smile

mallani · Guru

Hi Kayla,

There are too many tests these days!!! Your test is a Bayer test( which I hadn't seen before) using CIA (Chemiluminescent ImmunoAssay). Values >11 indicate the test is a true positive for the anti HepC antibody. You now need to get a Viral Load done to see whether you have active infection. Sorry about my initial confused reply. Good luck, you may be lucky. Cheers.

shotgungirl · Member

Hi mallani,

I did forget to include that on my lab sheet underneath my results, it read "Positive results with an index of > 11.0 are accepted by CDC as having anti-HCV status with no need of confirmation. "

Was just wondering if anyone had further info on these numbers or what other tests they will do after getting this result.

mallani · Guru

Hi Kayla,

Just because you tested positive to the HepC antibody does not mean you have active disease. It may mean you have been exposed in the past, but do not have active HepC. Your 'number' of >11 is strange, and I wonder whether this is really a Viral Load. You may be sick from something else other than hepatitis. You need more tests so let us know. Cheers.

shotgungirl · Member

Thank you everyone for your replies!

I have let my doctor know about the shop I believe I contracted it from.

Yesterday I picked up a copy of my labwork from the hospital just out of curiosity. I found out that it said I was "reactive" to Hep C, and my number was >11. Can anybody tell me more about this?

I got a call from my specialist's office as well! I was very happy. Since he is so far away from my hometown, he is sending orders to the hospital here for some more lab work that he will need, then his office will contact me again once they receive those results.

Thanks again for everyone taking time to write me back. I know I am lucky to be one of the few to get ill right away from the disease, but I feel odd that I am sick. I don't feel like I've had it long enough or that its really "okay" for me to feel sick because of everyone else who has had it so long with no symptoms. Did anyone else have symptoms that came on so early?

Tig · Admin

Hi Kayla! I also contracted HCV from a tattoo. But I got it back before they even worried about cross contamination. I hope you mention your concerns about that tattoo shop to your doctor and to the local police. They have to be reported and stopped before they do that to anyone else! I'm glad you found us here and look forward to talking with you. There are some real knowledgeable people here that have become great friends and have helped me over some very rough moments. It's a good place to be!

shotgungirl · Member

Thanks!

I haven't found any of that out yet. I don't know if they are going to have the new doctor run tests or what they are going to do.

I think that is my biggest hang up so far was that I found out I was positive and got no other information. Now I am just waiting to hear back for an appointment from another doctor in a big city over an hour from home. hmm

I have a positive outlook as far as clearing the virus. I'm just very scared and curious and biting my nails in the meantime.

Thank you for your response, and I will definitely update as I find out more about my diagnosis!

mallani · Guru

Hi Kayla,

Welcome to the Forum. Did you find out your Genotype and what your Viral Load is ? Let us know as that can have a big impact on treatment options. At your age, the chance of being cleared of the virus is very high, and you may be able to wait for the new drugs that will be approved shortly. If so, you will probably have a short course of treatment with few side effects. We are here to help and support, so ask any questions you like. Good luck.

Cinnamon Girl · Guru

Hi Kayla, welcome from me too, I`m glad you decided to join us!

I think all of us here can relate to how you must be feeling right now, the diagnosis comes as a shock to most people and it does seem very scary at first. I`m sure your new doctor will run more tests, and once you know your genotype and more about your treatment options then you`ll be able to see the way forward more clearly.

In the meantime, keep in touch with us and try not to worry, you`ll be fine!

Here`s a link you might find helpful, the article is called `First Steps with HCV for the Newly Diagnosed`, and it contains some very useful information and tips....

http://www.hcvadvocate.org/hepatitis/First%20Steps/First%20Steps%20with%20Hepatitis%20C%20for%20the%20Newly%20Diagnosed.pdf

Wishing you all the best! smile

shotgungirl · Member

Hi everyone. My name is Kayla. I am 22 years old. I've been reading through some posts for the past couple of days and decided to join!

Three days ago I got a phonecall saying that I was positive for Hepatitis C. I saw my doctor that day who reviewed my lab results and confirmed the diagnosis. He said that he is sending me to a doctor about an hour away in a bigger town who will be able to get me set up with treatment and that I will be able to beat this. He said there is no damage to my liver whatsoever right now. We have been trying to figure out for several weeks why I had been feeling sick and why my liver enzymes were high. He said that I am very early on and should count myself lucky because not many people get sick right away after contracting Hepatitis. After thinking things over, I believe I got the Hepatitis from a tattoo shop I visted. They were busted for drug activity and other things not too far from the time I was tattooed there, and I also have come to believe they were using the same ink between customers.

I really have no idea what to feel right now or what to think. At the moment I sort of feel like I'm just floating around with this scary diagnosis... disbelief

-- Edited by shotgungirl on Saturday 17th of August 2013 06:01:14 AM

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