viral load and counting critters

Okay,here is another question for all of you.

when you say you have a negative viral load,are we talking zero critters or under 50   (<50)

I know several years ago there were several different vl tests.Some were neg at<200,<100,<50,etc.
When some one tells me I have a "neg viral load",I want that to mean ZERO or less.None,nada,zippo.So what question to ask my doc.I guess same as I just told you or asked even,lol.

My doc is pretty cool,he Hates it when I cry or ask too many questions.So then I research and  go gripe to my PCP who is the coolest dr.Will talk until morning if thats what I need.However,the gastro is Indian and he says I must continue yoga and meditation to complete this tx.Ok fine.If I remember correctly,I didnt have the energy to yawn last time I treated.I am so scared of starting treatment I do not know what to do.ACKKK and ARGHHH!

[NYgirl]

Wow landfill she is RIGHT you are SPECIAL and give hope to other people because of your SPECIALNESS!  What a great thing!  :)

Ann - hang around here and you will be just fine.  I think the worst part is really being nervous about the "first shot" and all that.  After you start most likely you will find it doable - hey not the most pleasant thing in the world - but manageable.

And dont worry - when I started in here a few months ago I had a billion questions. REALLY!  I drove everybody CRAZY.  But I made out much the better for it because I was able to challenge my doctor on some of his decisions that I did not agree with and when I asked him with real KNOWLEDGE he laughed and gave in to my requests.  KNowledge is POWER.  Remember that and just ask all the questions you have. It is important to you to do so!

Debby

[cuteus]

I had a long post that went into negative mode and I can't remember everything I typed! thanks to delphiforums!
Basically, some drs believe that we are in remission, while others believe in a virological cure. My latest GI, believes in the former, stating that HCv is sometimes found in the lymph system and liver peripheral vessels. Each dr has studies to back things up. Those that believe in remisssion say that our immune system is keeping the bug at bay, but I found hard to believe that my system can now do that, when 10 yrs ago, when I was younger and stronger, it couldn't! What is different now? Maybe the meds "deactivate" the bug so it can't multiply? So even if remanants are found they are no good to  re infect us? I will declare myself cured after a yr of negative PCR and a biopsy that says no HCV is active in the liver.  I am not going to follow the theory that is somehow hiding and fearful to come out. It does not make sense.
HEre is some sites worth reading
natap.org (it has the articles on SVR been durable as well as the ones saying it is not)
projectsinknowledge.com

[NYgirl]

Yoga? Meditation?  Probably both a great idea in theory but man oh man tell him to do it for you!  How are you supposed to do that if you don't have the energy to barely get out of bed?

I'm sure the guys will be around to answer your questions.  Personally I think I would avoid him when possible and talk to my PCP and then just tell him "yeah I'm doing my yoga" if I wasn't up to it or didn't want to LOL.

[friole]

I just got back from my appointment with my GI (who is also East Indian and blesses me each time I go to see him).

It was time for me to get the order for my 12 week PCR test and he used the LabCorp SuperQuant (which goes down to 100 copies or 39IU / mL. I asked him to order the LabCorp QuantaSure test that goes down to 5 copies or 2 IU /mL.  He was agreeable to that but said that the one he usually prescribes is the one that is used for the standard level of care.


So, in answer to your question, I don't think there is a test that will give you a zero critter result. The lower it goes, the more you can be assured of whether negative is really negative. So do your homework and find out what lab the doc uses.  THen you to the internet and research the available tests that that lab can do. I just went to LabCorp and plugged in Hepatitis C and found out all kinds of good stuff on the testing available. That is all I know

Don't be scared, Ann.  It is really not so bad.  And you are among friends here - good friends who understand.  The anxiety leading up to that first shot is far worse than the shot itself.
Kathy

[friole]

Ooops, you are no newbie.  Sorry.

Meditation - yea right.  I took a Ai Chi class for a month (which is meditative and like Tai Chi, but in the water) - very relaxing.  But then I went to a metaphysical fair on Sunday and got a picture of my aura -- I'm here to tell ya, that meditation wasn't working.  It showed all stress and too much brain activity - at least that is what the photographer said.  He said maybe I needed to try something else.  ha ha - yea, like getting off of tx.

[landfill]

HCV is primarily a liver infection.  Some viruses appear in the blood but their number doesn't mirror the level of activity in your liver.  My dr said that HCV replication had been observed in a certain blood T-cell and it may be that secondary infection that the PCR tests measure.  He said that HCV viremia usually has a blood load at least in the hundreds of thousands and when that count heads for zero it means that the drugs are working.  I don't know if he would base a treatment decision on whether the count is 10 or 500 so I don't know whether it matters what the detection threshold is.

My starting load was 400,000 IU/ml at wk0, 2,500 at wk4, <1,600 at wk14 and undetectable at wk18.  I don't know what the threshold of any of the tests were.  I had 48 weeks of tx and I'm SVR.  Best wishes.

[ann_h]

Thanks ya'll for your time and info.

If you have 2-5 copies of the virus still in your system,then does the virus just stay in your bod until they decide to go f'in crazy again? Or what?

Ya'll are all so kind.I love ya's already.

[cuteus]

you are one of those amazing folks who don't clear by wk 12, do the standard 48 and get SVR! you know that you are an oddity according to most studies stats, right?
What a nice feeling to be that SPECIAL stat!

[Aubbie]

Guess What?MY TEST CAME BACK TODAY!!! Iget on site and get so tired and I go to bed, BUT I am talking about all of you and especially HOPING WE KILL IT!HCV RNA NOT DETECTED RESULTS NEGATIVE< TELL me someone , I dont see Md till 29th of OCT. I am type one , LAST results are 129385. Bridging Fibrosis, I do nothing but stare at this NEGATIVE results!  IF I am doing good, and its killing it,  Wonder if I go for year or what? THESE TX can take so much away from us! I am on 14th shot this FRi. I take interferon -2b and 1200 of rebetol a day. I am drained physicall, mentally and emotionally.My muscles feel flabby and my CBC and CMp are lows. I am still thinking positve and  I feel this result is good NEWS, I am so excited, but my weakness is bad BUT THE MD SAYS THEY ARE OK!! I dont think so and I  cant beleive how it hurts to walk and even chew my food. WELL any one think I am clearing this hell!  WBC 2.8 HGB 11.3 HCT 34.5 RBC 3.76 GLUC 130 high calcium high 10.6 ALT AND AST ARE 29 and 27 ,  TSH  WMC is HIGH 6.05 ?????????????Hello to cougereyes, cuteus , snookman, friole, bon_ vivant !Fisheress, Tallblonde, Bronxrican007,   Dutchboy, chellski,  and jim. GOD bless all you supportive intelligent folks,  I know I have forgotten some  names! any suggestions?, on my results? Aubbie

[go-girl]

Are there different ways to grade viral load, I was just told I was 900,000 and I thought she used a term that sounded like (tas or something) dahhhhhhh can you tell I'm new at this game?????? I called back but my hep nurse is gone for a couple of days and I'm curious as heck? I had to redo bloodwork for my thyroid and creatinine yesterday to qualify for the study, so my thyroid is now .16 up from .08 range is 0.38--5.5 my free T 4is normal, I amI take 0.1 Synthroid, so she is sending it down to the US to Schering and see if I will be exempt, am to start tx Oct 24, creatinne is normal I am getting frustrated with the waiting game.

[GoofyDad]

Doesn't "<1,600 at wk14" mean undetectable based on a test with accuracy down to 1,600? Is it not likely that lanfill would also have been undectable with a more accurate test at wk 14? Or at wk 12 for that matter?

We had a brief discussion on this last week. Intuitively, I'm on board with landfill, that undetectable at, say week 8, is pretty much the same animal regardless of the accuracy of the test. You've gone from usually millions, down to some unmeasured  level. We know you're not at 0; if we thought you were we'd stop treatment and send you back to your life. So is it material that (VL > 0, VL < n) or (VL > 0, VL < n + 100)?

Jim took the postition that it's useful to use a test with accuracy matching tests used in studies/protocols you're following, and I can buy that.

I've got my 4 wk VL test coming up and I'm not scheduled for a high accuracy PCR. I think I'm comfortable with that and I'm happy enough just to have the 4wk & 8 wk tests. But I think further discussion around this could be beneficial to the group.

[cuteus]

might not be the same animal for some. Susan is one who measured 700+ in the last PCR, so she would have been undetectable and thought negative with a <1,600 test. Plus Don Alfonso was one who was detectable below 100 but above 2 in a PCR post wk 12 of tx. He went on to a yr after a negative PCR of a very sensitve test. Unfortunately, he relapsed after 90 something wk in tx. What if he still had a very low viral load when they counted him as negative, and that yr beyond that negative was actually only  a few months? It is a touchy one. I would rather have a very sensitive qualitative test in my first PCR.

[friole]

I  am also opting for the most sensative quantitative test I can find - even if it is not the one the doc usually uses or the standard.  I don't want to have 35 IU in me , thinking I am clear, when the test only tests to 40 IU.  WIth this LabCorp test that goes down to 2, I think I will feel pretty comfortable, if (hope is hope) it shows negative.

[GoofyDad]

Your points are well taken. The point I wish to make is that the assuption is that no one is negative at 4 or 8 weeks. They just happen to be below the scale of the test being used. Find a good enough measurement, and you'll find virus somewhere. So, my feeling is that all you can know at that point is that they are very, very low, regardless of test. Do treatment decisions hinge on just how low they happen to be? Maybe they do. That's what I'm asking.

[landfill]

I think the EVR definition has changed since my Peg-Intron tx started in 9/02. It was 2 logs or undetectable at wk12 and undetectable at wk24 and wk48.  Somebody who was around then tell me if I'm wrong.  I think a slow responder was 2 logs at wk12, detectable at wk24 and undetectable at wk48.  At that time they were trying to decide if extending tx for slow responders would pay off.

At wk4 my enzymes had gone from high normal to low normal. The dr said the combination of the enzymes and 2 logs made it a good response and I should plan on 48 weeks. He also said the HGB was falling too fast (15.8 to 10.5) and he reduced the riba from 1200 to 800. I think it went to 1000 around wk16 and back to 1200 at wk20.

I was still detectable at wk14 because I remember telling him I was disappointed and he said it was still a good response.  I spent the remaining weeks with some confidence that I was going to be SVR . I can tell by reading this board that this isn't considered to be a very good response now. I didn't study the subject as much as many here do. I just trusted that the dr would make good decisions.  I'm not saying that you shouldn't learn about it.

One last thing. When I read about counting viruses I get the feeling that people are watching the drugs kill the virus. They don't.  The inf changes the immune response so that your body kills the virus while the riba helps by slowing replication.  This must affect the way viral kinetics are used to predict outcome but I don't know how.

[Tallblonde]

How right you are.  In fact, if you recall, I did have a PCR come back as "undetectable" -- but my joy was short-lived when I discovered that the test only measured down to 615 IU/mL.  It was a month later when I re-tested and the results came back as 714 IU/mL.  Close, but no cigar.  

Susan

[cougareyes]

It's great it is working, You've got to hold on to that to keep going. I'm a week ahead of you and I feel the same way, and I just got my undetectable results back also.
Your numbers are very similar to mine and I'm struggling everyday, my doctor says I am doing good also. I just had to come to terms with the fact that for the next year this is the way it's going to be. I've only been able to return to work for 14 hrs a week and other than that I'm pretty much a zombie.
We have to sacrifice this one year for the rest of our life. In the scheme of things to get rid of this monster, one year is worth it.  Keep It Up

[cuteus]

many drs are now calling any detectable vl at wk 12 a slow responder, but they switch to non responder if still detectable at wk 24. Studies show a very low SVR rate if still detectable at wk 24, with 48 wks of tx. That is why some drs want to go 36 or more wks from the point of clearance. Of course, some drs still call detectable vl at wk 24, if it has dropped considerably a slow responder and will treat for yrs, if necessary, to achieve SVR. Not enough studies on extended tx, though, not even in 2003. I did extend because, like you, even though I also started with a low VL, I was still detectable at wk 12. I did not know exactly when I cleared since the next PCR was at wk 26. I had to take that PCR as the base for extension.
It looks like your dr was correct in his assessment of your case. MAybe I would have also achieved SVR with the 48 wks, but I did not want to chance a relapse. It is so unpredictable who is going to get SVR with basically the same stats throughout tx. Congratulations to you!

[landfill]

That confirms the impression I get that each dr decides for himself how to treat it.  That by itself is a change because they all used to do what the annual liver convention said to do.  I think that they were reluctant to exceed 48 weeks at full dosage for any reason.  I guess they're getting smarter and learning more about the drugs.

One more point about measuring vl, when they wanted to know if the virus was present they used a test that was just called "qual" that was supposed be more sensitive than any of the "quant" tests that gave them numerical results.  The qual was just yes or no.  Is that still in use?

[cuteus]

yes, the qualitative test is recommended at wk 12 into tx. Not sure why docs are doing quant tests instead. I had both.