Hep C Discussion Forum

Cheddy · Moderator

RE: Losing my mind over 2 reactive anti-body tests

Tig · Admin

OMG!! Yes, that's perfect This one is mine, I hope you're bringing some for everyone else!

June, this is one of our favorite things to tease each other with, SWEETS! Bad, but oh so good! biggrin

Canuck · Guru

Everybody happy!?

Image result for photos of outrageous decadent ice cream cakes

Tig · Admin

Hi June,

Thanks for the kind words! The forum is supportive and respectful because these good people care. We have an outstanding family here, one you belong to. I'm so glad you introduced yourself!

Now what is the ice cream flavor of the day? Two scoops, w/nuts and caramel, plz!

JuneInParis · Newbie

Yessssss congrats on your amazing test results Shadowfax!

Indeed I feel very lucky but I am happy to be admitted to the party! You guys have had so much resilience and courage in fighting the disease you're real inspirations! Ice-cream it is!

Also, I had to say it, congratulations on building such a safe, mutually supportive and respectful space in the merciless jungle that the internet can sometimes be, administrating the forum must be really hard work, I guess Tig is to be thanked for that :)

Canuck · Guru

Lucky June may be the only person who got to come to this icecream party (without drugs), but the rest of us may bring some, if we need to.

Double scoops all round today, for all of us virus-less ones, with syrup AND EXTRA chocolate for SF (NUTS for me)!

Bonus SF! ... anti-lipid drugs may reduce fibrosis (so I've heard)!!

It's a very good news day SF! biggrin C.

Shadowfax · Guru

Maple syrup and Ice cream ... Now all we need is chocolate.

EOT +24 UND - I had no doubt. Having said that we will be doing lab work every month now for six months to ensure nothing goes wacky because of all the new meds I am on even though my specialist said that ones like Crestor should not be a problem now as opposed to before since my liver is no longer inflamed.

My Ultra Sound was also just fine again and I will go again in six months. When I see him regarding that, he will give me a req for a Fibroscan. I was never in a hurry for another one since I know that it would take time if there was to be any regression so the next one would be one year after treatment and 1.5 years from my very first one.

SVR

SF

Canuck · Guru

Hey,

This is just like a mini-party!!!!

We all, here in this thread, are all virus-less! Somebody crack open the ice cream and maple syrup!!

Mind you, everyone (except lucky June) had to do drugs first, to get in this party state. But what the heck eh?

Anything for a good time! hee hee biggrin C.

Shadowfax · Guru

Nothing to worry about from this post and yes, you have great doctors June.

I am glad you are done with your 6 month Cheddy.

I will see my specialist tomorrow morning and although I had my labs done Oct 17th, as mentioned before I never even called his office to find out if I am EOT+24 SVR because my labs were so good. I know I am but will report back here tomorrow when I hear it from him.

SF

Cheddy · Moderator

Hi June,

As usual, Tig is spot on.

I understand the feelings you are having. I just nailed my 6 month test with confidence, but there was that lingering concern at the end of treatment. It's just part of the emotional shock of the whole experience from diagnosis to the finale.

But, it's time to shift over to the joy of being undetected. You worked hard for that and you deserve the rewards and benefits of relief. Seriously, I, and my hepatologist recommend a celebration. I think it helps to have some sort of maker to signify crossing the finish line.

Go out and play!

Thanks, June. You've given us all some very good news.

Cheddy

Tig · Admin

Hi June,

Woohoo! That's very good news. I agree with Canuck, you have a couple of doctors that are giving you good advice. The follow up PCR in 6 months is a good idea and will put this to rest in your mind. Instead of concern, you should be shedding your fears and start celebrating! Don't spend anymore time worrying. You're way ahead of that now and I suggest enjoying the awesome news! smile

Canuck · Guru

Hi June,

Good news for you!

Basically, I can only repeat what I previously posted to you before (below) - except .... that we can (now) just skip right over that bit that was worrying you so, whether you would find out from your PCR whether you had a viral load, or not.

I am very glad your PCR was very good news.

And, I am really impressed that at your young age what good proactive care you are procuring for yourself, you've got a good, attentive, thorough ob/gyn doc, and you got yourself a very thorough hep doc.

Nice, that they will be re-reassuring you, again, in 6 months with another PCR.

You are getting some seriously good health care where you are!

I hope you are feeling better about everything. Don't linger in doubt, you (and they) have answered your fears and questions, you have no load, very unlikely you will ever have a load. Don't let fear rule you. Feel reassured by what you have now learned, and, you will nicely be given another opportunity to reinforce how healthy you ARE at the next PCR!! biggrin C.

JuneInParis · Newbie

Hello all,

Thank you for your kind words and the time you took out of your days to comfort and support me. It helped me through a period of extreme anxiety.

So I've got the PCR results, and it's below 15UI/ml, so undetected, which is absolutely great news.

My first doctor (OBGYN) said that no further testing was needed, but I went to see another doctor (specialised in infectious diseases) and she said that I needed to do the PCR again in 6 months along with the liver enzymes test to make sure that the virus is dormant.

I still have a lingering worry about the virus being active in 6 months, but I guess it's very unlikely that a dormant HCV virus would become active? I have never read anything like that, do you know anything about it? Anyway, she said that even if I do have the virus new treatments are very efficient and easy to tolerate, which I already knew thanks to all your inspiring testimonies.

The doctor was very calm and reassuring, and kept repeating that the treatment of HCV was being revolutionised.

-- Edited by JuneInParis on Monday 21st of November 2016 04:14:50 AM

Pablito · Senior Member

Hi June

Welcome to the forum. I remember well the day I got diagnosed. I was very very frightened. And just like you I did loads of reading, which mostly made me more anxious. Worse still, and as Tig mentions, the treatments back then were awful and not effective. I had to wait 10 years to get on the pox-fest that is interferon and ribavirin, and then another 8 years to get on to the new DAAs, which look like they've worked.

Anyway, I coped, as you will. The first port of call is to get the PCR result. You have a 20% chance that you may have cleared HCV naturally. And, if not and you have chronic HCV, then you will get treatment and be cured. It sounds like you won't have any liver damage. And you strike me as the kind of person who won't let up until your doctor gets you on treatment (if, indeed, you need it).

As to how you got HCV, who knows. Using a razor blade that had been used by someone who has HCV, snorting a one-off line of coke...there's loads of reasons beyond the usual major causes. But it's certainly not your fault. I got it from sharing a needle and even then I don't consider this my fault per se, as I was very unwell with addiction at the time. My responsibility, yes, but fault, no. There's a a few other people on here who don't know how they got it and you seem like you'll fall into that category and will have to live with the uncertainty of how it happened....

...but getting treated and getting cured you certainly will. And in a few years time you'll look back and it will just be just be a distant memory.

Pablo

Cheddy · Moderator

June,

It looks like you are already getting good advice here so I will just take this moment to welcome you here. You've got a good start by reading through these topics. I assure you that in this day and age, you will get through this. Please let us know what your next tests tell you. We'll be glad to help when we can.

Cheddy

Shadowfax · Guru

Hi June,

I have been reading these posts and did not have the time to give a complete and long explanation of my thoughts and understanding of it all. I am so glad that Tig and Canuck have done so.

The important thing to focus on is that no matter what the outcome is, it is almost certain you will be fine. Please hold onto that thought.

Have a great Sunday

SF

Tig · Admin

Hi June,

I'm glad you have found some reassurance here. There is a lot of good information here and we strive to keep it accurate, as well as current. With all the advances in care, that is so important.

I agree with your statement regarding finding out all of this now, completely. None of us were ever pleased to find out we were infected, especially when the only options were as you mentioned, treatments that were often worse than the disease. Trust me, they were awful. Now we're witnessing improvements in care that are lightyears ahead, few if any side effects and success rates approaching 100%. I have no doubt that we'll continue to see more of these advances going forward.

You have much to look forward to and from your message it sounds like you have been working hard on your future. Continue to be proactive, learn the truth about HCV and it will help you in so many areas. There is a lot of information out there and the majority of it is dated. Don't let Doctor Google lead you to the dark side, lol!

We're here to help, don't forget that... smile

JuneInParis · Newbie

Hello Tig56 and Canuck,

Thank you so much for your answers and kind words.

I have been scrolling through the forum and I can say I've found it extremely reassuring. I am happy to see that so many of you have successfully overcome the disease or are getting treated. I am starting to wrap my head around the fact that even if I have it, I will be able to live a long happy life and get access to treatment.

I guess a big part of me feeling bad was the guilt but I'm convincing myself that having been exposed to the virus at some point was absolutely not my fault.

Tig you're right, I have spent the last 4 days reading everything I could find on the internet abt HepC and I don't think intensive googling is a good thing. The most frightening thing I have read so far was testimonies of people getting treated with the old drugs and saying that treatment was worse than the disease itself, that they couldn't function or get out of bed for 6 months... that was terrifying specially since I have recently gotten a new job abroad that I'm so excited about and would be heartbroken if I can't go. Also a list of "famous people with HepC" most of whom had died of the disease.... that was terrifying.

I am so grateful that I have found that forum though, at it paints such a different picture of the disease!

While waiting for my PCR I am staying away from alcohol and working on my anxiety, trying to get less panic attacks.

It might seem weird ? But a part of me is grateful for having gotten that test result? If I do have it then it's great news that I found out about it young and while liver seems to be functioning properly.
If I don't, my first serious health scare has made me seriously reflect about my life, important relationships, priorities etc, I feel like it puts stupid things I used to worry about before into perspective.
I know it might seem stupid to say that a part of me is grateful, but this is how I feel.

Have a nice day!

-- Edited by JuneInParis on Sunday 6th of November 2016 07:51:00 AM

Tig · Admin

Hi June,

Welcome to the forum. I'm sorry you're here because you're scared to death however. Hopefully we can reduce your anxiety a little and help you with some information. First, you need to wait until you receive the results of your PCR viral load test. Lots of people test antibody positive and do not have the chronic infection. Approximately 20% of people exposed to the virus actually clear it naturally, the rest will develop the chronic phase of the disease. Those that have cleared the virus naturally and those that clear it following successful treatment will always and forever be antibody positive. All it indicates is previous exposure. The PCR determines if an active infection is present. Reactive HCV antibody screening results with signal to cutoff (S/CO) ratios of <8.0 are not predictive of the true HCV antibody status and additional testing is recommended. Which is exactly what you're doing.

HCV has an extremely low incidence of sexual transmission among monogamous heterosexual couples. I'll include a link and some information that will help you understand it clearer. Unless there is clear blood to blood transmission, the odds of infecting another individual is rare. We very often have no idea how we acquired the disease and if you're one of them, don't beat yourself up over it. The new treatments are extremely effective and easy to tolerate. Don't spend a lot of time searching Google for answers, if you do, you'll find one accurate article out of 10 or 20. The rest will be inaccurate and potentially frightening, don't go there.

The fact that your liver enzymes remain low is very positive. A sick and injured liver tends to show much higher elevations and is often what leads most doctors to test for the antibody and perform the PCR. Hepatitis is liver inflammation, inflammation will present itself initially with higher liver enzymes. Try to let that instill some calm into your fears right now. You're very young and this is a very slow progressing disease. I had it 35 years before finally getting clear of it and I'm just as ornery as ever, just as good looking too. I wish I could just turn my clock back to your age!

Let me give you this information and if you have further questions, don't hesitate to ask. It'll be okay, I promise!

Sex Between Monogamous Heterosexuals

Canuck · Guru

June,

I am sorry for your worry, but you HAVE gotten ahead of yourself here.

You have to wait for the PCR viral load test results to come back to show whether you are carrying a viral load (chronic hep c), or not.

But from the picture you paint here, your chances are extremely low you have hep c.

Your positive antibody tests (at this point) merely indicates you have been exposed to hep c at some point in your life.

The HCV RNA PCR viral load test will tell you whether you actually carry a viral load (or not). You have to wait for this test result, that will be definitive.

Some people can be exposed to hepc as babies, or as adults, and go on to become chronic carriers (or not). Some can guess how, or, NEVER figure it out (how, why or when they got chronic hepc). Others just know their antibodies test positive and the antibodies are just there, merely telling them they had been exposed to hepc (at some time, in some way, with the cause of the exposure remaining unknown), and do not have chronic hepc.

You have to wait for the viral load test results. You are fretting, but it will likely show you have no load and no chronic hepc. That is the only important bit.

Good tho, that you are careful, and taking care of yourself so well. Try not to worry. C.

JuneInParis · Newbie

Hello everyone!

I hope you're all doing fine and I wish you courage and strength in battling the disease.

I am really sorry to burden you with my worries, but the message is going to be long, I need to put it into writing because I am driving myself mad:

I am a girl born in 1992 (24 yo). I have no history of drug-abuse (much less IV drugs), no tattoos nor piercing, never received a blood transfusion.
I have always had severe anxiety which has prompted me to get frequently tested for STDs and use protection with partners whose sexual history I didn't know. Before having unprotected sex with a new monogamous partner, I require that we both get tested. None of my ex-partners has tattoos or piercing or a history of IV drug abuse.

I usually just assume that the doctor is gonna get me tested for all STDs so I am unsure if me or my ex partners have ever been tested for Hep C since it is not considered an STD by most sources. Last week I visited the gynaecologist for a pap-smear. Being anxious, I requested an other routine screening (even though the 2 sexual partners I've had intercourse with during the last year and a half had gotten tested) and the doctor jokingly said that I was at low risk for hepC and Syphilis but he was going to order them anyway because... better safe than sorry.

Two days later I was devastated to see my HCV antibodies test was reactive with an S/CO of 7.5. The doctor seemed to think it was a false positive since I am extremely low risk so he orders a full liver function test and an other HCV antibodies test. The HCV antibodies test came back positive with an S/CO of 7.8 , but all my liver functions were fine. Actually, bilirubine was very slightly lower than the norm and albumine very slightly higher, which I was told was a good sign. My boyfriend got tested at the same time and was not reactive for HCV antibodies.

I feel confused, guilty and literally worried sick (unable to eat, function, or socialise properly). I can't help feeling that it's somewhat my fault, that I should've gotten better informed and requested HCV testing for me and my ex partners! Why don't they tell you that it can be transmitted sexually? Why don't they test you against it?! Why haven't I ever heard of HepC as a threat while I keep hearing about aids again and again (and getting tested against it)!?! I am angry at the world and at my self and I feel like I'm going half-mad waiting for the PCR result, next week.

I have informed my last ex-boyfriend, and he doesn't understand how he might've gotten it or passed it on to me, even though I know one of his exes might have a history of IV drugs, but this means that he gotten it through sexual contact and then passed it to me... double sexual transmission seems extremely unlikely.

The mere fact that I have been infected at one point in time seems crazy. I have read over and over agin that transmission through heterosexual monogamous contact with no HIV was very unlikely... yet it seems like the only way for me.

I can't seem to put these questions to rest - it's all crazy specially that I think two positive anti-body test rule out the possibility of "Biological false positive" ? Or is that still a possibility?

I just wish I could know for sure I have gotten it at the dentist or in a medical setting or by some other freakish coincidence so I am freed of the burden and shame I feel at the thought of having gotten a disease because of my own sexual behaviour. I can't stop thinking: it's all my fault, and I am terrified of the idea that I might have passed it to someone I love.

Any ideas, possible scenarios of what is happening to me here? Did anyone actually got the virus through non-violent MF non-HIV positive sexual contact?

Also, is the fact that my liver functions are fine a positive sign? I keep reading that it does not predict if I have chronic Hep C or if the liver is damaged... so why do they actually test you for that? Can I assume I don't have advanced fibrosis?

Thank you to anyone who has read this far and who would relieve my anxiety by answering these questions,

Best,

June

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