Geno Type-2 Relaps, Me again. About My Relaps Talk With The Doc.

Hi Folks, I posted once before about my relapse. As you may see by my first post, I am not really an expert on this topic. It seems I have lots to learn and getting lots of help here. Thanks for the responses.
Since my last post I went to the Doc (Rome, GA GI) for my talk after getting my 6
month after treatment check up results via the phone.
I would like to run the meeting points by you folks for comment.

He says I am his first geno-type 2 relapse. He is a good doc and has been at it a long time but he is not a hepatitis only doc.
He is referring me to Atlanta Gastroenterology Assoc. He claims it would be difficult to do better than this doctor.
My appointment is in Oct.
My viral load is 460k.
My blood work as far as AST's and enzymes and the rest are all in normal ranges or very close to said. The enzymes are just a tad elevated. Nothing alarming.
He says sometimes a viral load will stabilize?
He says I may need to do the same treatment again but for 48 weeks but can take a break, at least until I see this super specialist.
He says this Doc will biopsy for sure. Ughhh! Is this a painful experience?

Anyone know anything about Atlanta Gastroenterology Assoc?

I am 52 years old. Never been a drinker, never a drug user, no tattoos, don't know how I got it, not afraid, I will not let it get me down.  

[Mister beagle bailey]

Hi, so sorry to hear you relaped too.  I just got the news today.

Here's my stats:  geno 2B; VL before starting tx was 318,000
one month ago my AST 24 and ALT 13.

Then today VL now 4 million. I did 6 months and everything right, still I relapsed.

So I know how you feel, and again I'm so sorry.  

Beagle

[SoCal Lady]

When did you both first become UND?  I'm a genoB who was UND at four weeks and I'm wondering what the chances for relapse are for early responders....

I'm so sorry that you didn't clear the virus...

[mkeela]

I hear this relapsing thing for 2b's (like myself) is alarming lately...WHAT IS THE DEAL?? I was really happy when I found out my geno...now I am afraid. Anyone have some links to recent studies as to why all the relapsing in 2b's?? It is not only a few here on the board...I have heard other recent stories etc. Love to all..mkeela.

[TravisB]

I was a 2a and relapsed a few months after clearing.  A friend who was 2b also relapsed but it took him 5 months to test positive again.  Before, during and certainly after TX, I never bought the numbers that the drug companies peddled at the time and I still don't.  Hang in there.

[Mister beagle bailey]

Yes, script is from NY dr.  I have searched the web and can't seem to find a site that rates labs.  Do you know of one?

Did your blood go to Quest in Tampa?

Beagle

[Pauly Boy]

I'm very disappointed to hear your bad news. It seems like there is a lot of this going around right now. I'm sorry. I'm a type 2b showed UND week 4 and 12 and I have 8 weeks left so I'll be following in your footsteps. I need to have a bx done as well after tx, since we uncovered the possibility of me having the hemocromotosis gene and a high ferritin level. I don't know the particulars about bx but I've heard they have come a long way with this procedure. I'm sure that someone more informed will shed some light on this issue. Please let me know how you are doing and what you decide to do.  Stay Strong, Pauly

[TravisB]

By BX I assume that you're talking about a biopsy.  If that's the case I can tell you from my own experience that you absolutely have to insist on an Ultrasound or such like device to guide the doctor to your liver.  If he uses that to find your liver, a biopsy is a piece of cake and nothing to worry about as far as the procedure goes.  It's relatively painless and is over in minutes.

[Pauly Boy]

Thanx, pal. I'll keep that in mind when preparing for mine. Wow sounds like it could have been a real roller coaster ride in the dark ages. Keep killing those critters.     Pauly

[settecasi1]

I was undetectable in 10 week and at 24. My VL before starting was 780k.
I'll post again after seeing the specialist in Oct.

[Mister beagle bailey]

I posted to you above how sorry I am you relapsed as I got the same news yesterday as you did.

I have a question-- What lab did you use and what test did you have done? You are in the same part of the country as me and wondering if Quest was it sent to Tampa?

Beagle

[FlGuy]

How you doing today?  You have any get-away-from-it-all plans.  A trip to Ca., time at the beach - anything?

[Mister beagle bailey]

Thanks for asking.  I'm trying to snap out of it but can't seem to get a handle on it, as you know being your a relapser.  My dr is having a problem believing the results too.  He mailed me another script for a PCR but not sure where to go for it.  He also commented that quest labs have a lot of errors and last year was one of those years when their ratio of errors were high.  
How are you doing?  

BTW -- What lab and test did you do for your PCR?

Beagle

[FlGuy]

All mine were at Quest too. I live not too far away from a hospital and a bunch of doctor buildings and always see 'Lab Corp' cars around, picking up at the various buildings.  Maybe you could do a web search to see if Lab Corp has a 'retail location' near you.  If not, make a call to a local hospital and ask them if they have lab services for an outside rx.  Is the rx from the NY doc?

[mycoldfeet]

As a relapser also geno1a, I know the letdown it is, from extremely high to the dumps, but that dragon hides like a coward, I'm re-treating for 72 wks this time, just to make sure we find him. I'm seeing a trend in both relapsing, and the Doc's extending treatment by almost twice the time, studies are showing a marked improvement in those that do the extended tx. Of course someone is always doing a study on something, but it makes sense, what they 1st thought was good enough, they are having to rethink. As far as bx goes, the fear of it is much worse than the proceedure, I've had 2 the 1st one they asked me if I'd rather be asleep (duh) the second I was awake and besides slight discomfort and a pushing feeling it's over before you know it and gone home in a couple hours, git-r-done.

[sundancer2007]

Why don 't they just do it for 48 weeks?

[Pdilly]

I too and a geno 2 type 2a and 2c.  There sure has been alot of relapsing lately with the 2's lately.  I have an appt with my doctor at week 4 so I am going to ask him if I look like I am not going to clear if I can do it to 48 weeks.  i just want to get this thing done with not this starting and stopping stuff.

[Paris47]

I am making my appointment for a follow up with a new doctor due to all this...relaspe, this is becoming too common.
Why go thru this just to do it again, if you can do it one time right, by doing the tx longer?
am I right? or am I missing something.
totally scared after finally finishing my last shot.

[52TELE]

Hi Paris.. are you type 2?

[prettydamscared]

So sorry to hear your news.  Mister Beagle Bailey, I am so surprised and diappointed to read your post.  It's just that I've been following your story since I first found this forum...you've been through so much.  That's so very disappointing to hear.  

Sette, you have a really good attitude and got lots of good advice.  Keep us posted.  I wish you both the best.

[Mister beagle bailey]

Thanks, my doc was shocked also with the results and have already mailed me out a new script.  He also said that Quest has and had a lot of false - positives.  He recalled a time last year when Quest mailed out letters to patients and Drs at the same time about their lab having errors connected to their PCR's for Hep C.  Doc said they went nuts as they got bombarded with calls from patients as they were reading their own letters.
He went on to say how horrored it was and how it took time to straighten out.

Now I don't know which lab to go to as I'm not sure if this a error or the real thing.

Beagle

[rochammer]

settecasi1
I am a geno 2 relapsed also. I have been looking for  a year now for a geno 2 that has relapsed retreated for 48 weeks and have found none. Guess I am one of the first I know it works for 3 & 1

[FlGuy]

Looks like mine were done by Quest near here, lab in Miramar.  You can look at labcorp.com and then find 'Patient Service Center Locations' - there are several around here. Not sure of your zip code range there.  They also have a toll-free number so you can ask what type of pcr, or what test they would do, given the rx you have in hand.

[jmjm530]

I should probably add that the test that probably has the most specificity (most accurate with fewest false positives, etc) is Quest's HCV RNA Quantitative bDNA. However, it is only sensitive down to 615 IU/ml, which is why it's mostly use pre-treatment to confirm a postitive antibody test and for initial viral load computation.

Still, it could be combined with the HCV RNA Qualitative TMA, so if it read negative, for example, the qualitative could confirm whether or not you had virus down to 5 IU/ml.

I believe there is also a way of ordering these two tests where they run one test first (the quantitative bDNA) and only if negative do they run the other more sensitive test. You would need to speak to the lab or your doctor to get the relevant test codes.

[FlGuy]

The pcr's I had were in the list Jim mentioned, HCV RNA Quant Real Time PCR.  Although they drew and froze the sample locally, I think it went to Miramar (unless it was frozen there), although that location is only mentioned on one of the pcrs.  The others show only the Quest draw location.  There seem's to be little accounting for VL.  My pre-tx was about 600,000. 5 months post it was 2 million, but with rising alt/ast 4 months post tx. Unless there all done, splat, gone it makes little difference to me now.  I'll do another in about a month, a couple of weeks prior to the do-over.

[rochammer]

settecasi1
I am a geno 2 relapsed also. I have been looking for  a year now for a geno 2 that has relapsed retreated for 48 weeks and have found none. Guess I am one of the first I know it works for 3 & 1

[jmjm530]

My understanding was that any Quest lab errors -- if they existed -- were more with the very sensitive tests using TMA technolgy, not those using PCR or bDNA technology.

Assuming this to be the case, then to be realistic, your test results unfortunately are probably accurate since from your viral load result it appears your test was either using PCR or bDNA technology. Still, it makes a lot of sense to get retested and hopefully it was lab error the first time.

If it were me, I'd probably use what I was told to be Quest's most accurate test -- the Bdna -- as mentioned in my previous post. My understanding is that this is the only FDA approved test that Quest and most labs run.

I would also then have the doctor instruct the lab to automatically run the more sensitive TMA qualitative if the Bdna turned out to be negative.  I see nothing wrong using Quest labs as long as things are double checked.

All the best.

-- Jim

[Paris47]

Yes indeed, type 2...
just made appointment,
they can see me sept 5th.
scared to death....
feeling good physically,
but not sure for my future..

[Mister beagle bailey]

Jim, the test quest ran was the B-dna as perscribed by my dr.  

I just don't understand how a VL of 318,000 before tx can go to 4 millionspost tx and that the alt of 13 and ast of 24 only 4 weeks ago can translate into relapse.  Also the other liver testing done showed everything normal.

Flguy, Where did quest send you PCR to be done?  they only have a few labs around the country that does it as they have to freeze the blood.  Mine was sent to their lab in Tampa.

rockhammer, I wish you all the luck in the world and await to here how well you do.  I'm a 2B and found out yesterday I relapsed too.  How many shots have you done so far on tx # 2?  When did you find out you relapsed on the first try, how many weeks post tx?

Beagle

[Kalio1]

It is hard of us when one of our pals relapses but the odds of clearing as a geno 2 are STILL GOOD. It doesnt mean you will relapse so try not to worry so much. See what your doctor says but remember geno 2 is still easier to clear than other genos and has the highest SVR rate.

[rochammer]

Mister beagle bailey

I am on shot 46

[jmjm530]

I also heard anecdotally about some problems with false positives at Quest, specifically with their more sensitive Heptimax test. Have no idea if true or not, but decided to change tests post treatment. My doctor never makes a major treatment decision based on a positive VL that follows a negative VL without re-testing, so I think a re-test is a smart next step.

Here are the two tests I ordered and hopefully this will be of some help. You can find a Quest lab pretty much all over, just check the phone book, or easier, their web site
http://www.questdiagnostics.com/ and punch in your zip code. All you need to do is bring the Rx with you. You can even have your doctor fax them the RX, but probably best to check with the local lab first to see what their procedure is.

The tests I took for my 3-month post treatment and 6-month post treatment. Both at Quest.

1. Name: HCV RNA Qualitative TMA

(This is a very sensitive test down to 5 IU/ML. Because it's qualitative, you either get "Non-Dectected" or "Detected" as a result. It uses the Bayer Versant Technology and the word "Versant" sometimes appears in the tests name as in "Versant HCV RNA Qual TMA")

2. Name: HCV RNA Quant Real Time PCR

(This test is less sensitive (down to 50 IU/ml) but may be more accurate (better specificity) because it uses PCR technology. Because it's quantitative, if virus is detected, you will get a number somewhere between 50 and up into the millions I believe.)

The reason I did both was more or less of a belt and suspenders thing, since it can be argued they are redundant.

I hope this finds you OK during what must be a very difficult time.

-- Jim

[cuteus]

ask for a PCR at that meeting, if you are negative early on tx, extended tx is not reccommended.

ok, brainfog again for me, but there was a member who was negative through tx, had one neg PCR post tx, next was positive, and the next, and then, when getting ready to re treat, that PCR showed no HCV. apparently the body got rid of what had surfaced before the second tx.  
I wonder where the heck is this virus hiding for so long during tx? and why don't the meds touch it where it hides? once the meds are gone, out they come to "play"! some puzzle!