Aa
can't find a genotype? HR, Whrose, Jmjm, help
on a VL of 29 they say my son has HCV but they cannot find the genotype.
Is this just a incompetant lab????
Also they want to treat him with no biopsy before hand.
also they want to maybe just treat for 6 months, regardless of genotype, since they don't have one.
But, is this wisdom is his genotype is 1a as mine is??
And how can they know how long to treat without genotype??????????
Is this just a incompetant lab????
Also they want to treat him with no biopsy before hand.
also they want to maybe just treat for 6 months, regardless of genotype, since they don't have one.
But, is this wisdom is his genotype is 1a as mine is??
And how can they know how long to treat without genotype??????????
I was diagnosed about two weeks ago with hep c. Today they called and said they don't know what genotype it is because there isn't enough to tell. Waiting to get viral load.... What does no genotype mean?
thanks Jim, we will definitely be getting those kinds from now on.
we asked for full records but they only sent us Nov. labs, not sept.and also waiting for mail for the Dec lab, so as soon as I get those I'll post them for you to see. What they were.
I'm with you here, and thanks for the confirmation. It's just too iffy to go off all happy happy joy joy and not keep an eye on this.
thank you for the great answer!!
mary
we asked for full records but they only sent us Nov. labs, not sept.and also waiting for mail for the Dec lab, so as soon as I get those I'll post them for you to see. What they were.
I'm with you here, and thanks for the confirmation. It's just too iffy to go off all happy happy joy joy and not keep an eye on this.
thank you for the great answer!!
mary
I think the LabCorp test mentioned would be similar, but the test mentioned by "HR" I believe is the
"Hepatitis C Virus (HCV), NGI QuantaSure™, Quantitative, PCR" by LabCorp
http://www.labcorp.com/datasets/labcorp/html/chapter/mono/id004600.htm
"Hepatitis C Virus (HCV), NGI QuantaSure™, Quantitative, PCR" by LabCorp
http://www.labcorp.com/datasets/labcorp/html/chapter/mono/id004600.htm
Do you have written down what specific tests were run on your son (their names), when they were run, and their sensitivity?
Without knowing the above, I can think of a number of possiblities, including:
1. He never had HCV and the two positives were false positives.
2. He had the virus in the acute stage and cleared it naturally.
3. He is currently in the acute stage when viremia can be intermittent -- meaning it can go in and out of the detectible range.
----------
Playing it conservative, and assuming it is number 3 (above)-- then the prudent thing to do would be to keep periodically testing for both virus and antibodies for "x" number of months.
The test for virus should be the most sensitive available.
Two excellent such tests are : (1) "HCV RNA TMA QUAL" by Quest Diagnostics; and (2) Hepatitis C Virus (HCV), NGI UltraQual™ by Labcorp.
Let's keep our fingers crossed. I think you have every reason to be optimistic, but depending on what tests were run before, it might be best to follow a prudent course of more periodic testing.
-- Jim
Without knowing the above, I can think of a number of possiblities, including:
1. He never had HCV and the two positives were false positives.
2. He had the virus in the acute stage and cleared it naturally.
3. He is currently in the acute stage when viremia can be intermittent -- meaning it can go in and out of the detectible range.
----------
Playing it conservative, and assuming it is number 3 (above)-- then the prudent thing to do would be to keep periodically testing for both virus and antibodies for "x" number of months.
The test for virus should be the most sensitive available.
Two excellent such tests are : (1) "HCV RNA TMA QUAL" by Quest Diagnostics; and (2) Hepatitis C Virus (HCV), NGI UltraQual™ by Labcorp.
Let's keep our fingers crossed. I think you have every reason to be optimistic, but depending on what tests were run before, it might be best to follow a prudent course of more periodic testing.
-- Jim
update on son, now they can't detect virus again.
I should be jumping for joy...
but we now have 2 positives and 2 undectables and no genotype...so either way.
does he have it, doesn't he have it. Are the machines or labs this unreliable??
is this crazy making or what??? I desparately want to believe the best...but it's hard to know here what the heck the truth is!!
mary
I should be jumping for joy...
but we now have 2 positives and 2 undectables and no genotype...so either way.
does he have it, doesn't he have it. Are the machines or labs this unreliable??
is this crazy making or what??? I desparately want to believe the best...but it's hard to know here what the heck the truth is!!
mary
JMjm,
you doll man, yes I asked for the TMA and even called Quest main headquarters here in Portland, she was very helpful. and talked to the director...who said genotype cannot be accurately determined below 600 even on their TMA hepimax. Weird huh???? And yet Benner thought it was weird they couldn't find the genotype at 29....so who knows what to think!! ??
How come if that's common knowledge at the labs, the top PDX doc didn't know that??
Susan,
I guess I'm worried with no genotype because mine is 1a, and since his only known exposure is me, that means his genotype may be that as well, and that begs the question of how long to treat. Certainly 6 months is tons better than 1 year, but at what risk of relaspe with 1 a?
whrose,
thanks for the prayers first, and all the tenderhearted thinking, yes, the genotype cannot be known, we are retesting now, for a third time, and since Benner's advice is to go ahead and knock it out before it can get a good grasp, knowing my son he will take that advice over any I give him.
(when I start trying to wax molecular and specific on him his eyes just gloss over.) PArt of it may be denial, part may be I just give way too much info. If you are talking computers, then he can do geek speak all day and into the night, but medical stuff seems to utterly baffle him.
In fact, he's just now beginning to see that not all docs are created equal, based on whats happened to me, and something recent with him where they totally dropped the ball.
But it's a long haul to getting a young person especially to where they understand less knowledge means far less care in far too many cases. Would that this were not so, but it is. I blame the system that forces hurried guesses and visits and limited testing more than the docs. But that still doesn't help when we are the victims of all those, hurry along who's next oversights.
alagirl
I probably will go ahead and treat him, and do it while I can still "be here for him".
this is not an easy tx as you know, and he's a very bright, slightly jittery type....I'm concerned most how he'll fair mentally on this stuff. Being AD/SSRI free has not been fun for me, and he's more likely to be affected with his persona. That's where I can really use some prayers.
everybody else------thanks for all the good thoughts, this Forum is the best!!!!!!!
and it's because of all of you.
Mary
you doll man, yes I asked for the TMA and even called Quest main headquarters here in Portland, she was very helpful. and talked to the director...who said genotype cannot be accurately determined below 600 even on their TMA hepimax. Weird huh???? And yet Benner thought it was weird they couldn't find the genotype at 29....so who knows what to think!! ??
How come if that's common knowledge at the labs, the top PDX doc didn't know that??
Susan,
I guess I'm worried with no genotype because mine is 1a, and since his only known exposure is me, that means his genotype may be that as well, and that begs the question of how long to treat. Certainly 6 months is tons better than 1 year, but at what risk of relaspe with 1 a?
whrose,
thanks for the prayers first, and all the tenderhearted thinking, yes, the genotype cannot be known, we are retesting now, for a third time, and since Benner's advice is to go ahead and knock it out before it can get a good grasp, knowing my son he will take that advice over any I give him.
(when I start trying to wax molecular and specific on him his eyes just gloss over.) PArt of it may be denial, part may be I just give way too much info. If you are talking computers, then he can do geek speak all day and into the night, but medical stuff seems to utterly baffle him.
In fact, he's just now beginning to see that not all docs are created equal, based on whats happened to me, and something recent with him where they totally dropped the ball.
But it's a long haul to getting a young person especially to where they understand less knowledge means far less care in far too many cases. Would that this were not so, but it is. I blame the system that forces hurried guesses and visits and limited testing more than the docs. But that still doesn't help when we are the victims of all those, hurry along who's next oversights.
alagirl
I probably will go ahead and treat him, and do it while I can still "be here for him".
this is not an easy tx as you know, and he's a very bright, slightly jittery type....I'm concerned most how he'll fair mentally on this stuff. Being AD/SSRI free has not been fun for me, and he's more likely to be affected with his persona. That's where I can really use some prayers.
everybody else------thanks for all the good thoughts, this Forum is the best!!!!!!!
and it's because of all of you.
Mary
may you rest comfortably and always in the arms of the angels.
please do let us know how this turns out.
please do let us know how this turns out.
thanks to all of you for your advice and support...we are re-testing yet again...
I will respond individually when I have more umph...
it's weird I handle my news much better than his..
not really when you think mama though....
he had all the best and no exposures known, christian schools, piano, college, you name it...
and still no sex, so the only real exposure has to be from me or his dad.
It's just like asking the bibles Job, "what hurts worse, your own sores or that your children are sticken..."
right now I am just fried from doubling my INF last week...and the year long side pain...
minus any AD's or procrit it feels like Katrina just blew through my body....
so will answer in more depth later if I can.
I will respond individually when I have more umph...
it's weird I handle my news much better than his..
not really when you think mama though....
he had all the best and no exposures known, christian schools, piano, college, you name it...
and still no sex, so the only real exposure has to be from me or his dad.
It's just like asking the bibles Job, "what hurts worse, your own sores or that your children are sticken..."
right now I am just fried from doubling my INF last week...and the year long side pain...
minus any AD's or procrit it feels like Katrina just blew through my body....
so will answer in more depth later if I can.
hmmm.... i believe that "all this" may allow you to take a little time to gain perspectives and obtain information. several more weeks into the new year might provide better insights and definitive actions along with giving you both time to enjoy the holidays and focus on blessings of the season. please try to find your peace with this.. as a mom who suffered with the possibilty of passing the infection to her children its very tough advice indeed...but i give it to you to help keep your spirits and sanity in regards to your own difficulties in fighting hcv. the emotional stress of all this can test you dearly...try not to let it devour you.
your son is 29 and as an adult will make his own choices...i hope you find some peace accepting his pathway towards treatment knowing you raised him to be a strong responsible man capable of navigating his own medical needs.
however terrible your heart aches knowing he is infected you must keep your own needs in high priority right now...for your own healing requires herculean effort and focus right now.
just my thoughts to help you hold on to your vision and supports your strengths right now.
hon...i am here for YOU and i know you are cared for by many people here also. don't carry this burden alone!
your son is 29 and as an adult will make his own choices...i hope you find some peace accepting his pathway towards treatment knowing you raised him to be a strong responsible man capable of navigating his own medical needs.
however terrible your heart aches knowing he is infected you must keep your own needs in high priority right now...for your own healing requires herculean effort and focus right now.
just my thoughts to help you hold on to your vision and supports your strengths right now.
hon...i am here for YOU and i know you are cared for by many people here also. don't carry this burden alone!
I know how I'd feel if I thought I'd given my son HCV, horrible. But I'm not convinced yet by those tests, and I'm not certain why it would hurt to repeat the initial panel along with the more sensitive RNA testing. I say this because with any luck both will be neg and this was just some medical error in testing. If so, you've killed two birds with one stone.
But if its not negative, the panel, then maybe enough time will have elapsed that the genotype will be clear by now and you will have still killed two birds with one (testing time frame) stone.
If he still comes out positive on the first assay but not the last test, I would prob go ahead and treat, possibly with just interferon at a reduced time, but who knows - as paranoid as I am, maybe with the entire six month course since he's young and can prob handle it, just to make certain.
And keep in mind, if the worst happens, and it turns out he's positive, he's got a great time frame for testing as he has such a low viral load it would appear he may well be acute, AND, he could just as easily have gotten this at a friend's house - before you go beating yourself up that you "gave it" to him.
But if its not negative, the panel, then maybe enough time will have elapsed that the genotype will be clear by now and you will have still killed two birds with one (testing time frame) stone.
If he still comes out positive on the first assay but not the last test, I would prob go ahead and treat, possibly with just interferon at a reduced time, but who knows - as paranoid as I am, maybe with the entire six month course since he's young and can prob handle it, just to make certain.
And keep in mind, if the worst happens, and it turns out he's positive, he's got a great time frame for testing as he has such a low viral load it would appear he may well be acute, AND, he could just as easily have gotten this at a friend's house - before you go beating yourself up that you "gave it" to him.
God bless your mothers heart! my goodness how difficult all this must be for you and son at this time. i wish i had that magic eraser in the sky to lift this new burden, at best i send you my prayers that only the very best outcome and knowledge surround you both and...also my mothers heart of care and support. (((+)))
from my limited understanding and upon finding a very good article on medscape released by the American journal of pathology dated 2007, it appears that a viral load of "29" is not enough to determine geno and sub typing. according to this article the best assay available that uses 5'UTR and also sequencing from the core region requires 4,810 IU/Ml as the lowest viral load to yield a geno and sub typing using the " versant HCV genotype 2.0 assay (LIPA 2.0 assay).
the article can be found http://www.medscape.com/viewarticle/561109_1
it would be nice to have HR confirm info as he surely is more educated in this regard!
my next thoughts would then be the consideration of his positive viral load of "29". a careful history of his factors for transmission would now be important in diagnostic/treatment considerations.
for example i assume all factors of false positive has been ruled out by your docs? if so.....then i would wonder next if his infection is acute vs chronic which would be defined by hcv infection over a 6month period.
if signs of infection greater than a 6month period of time and in consideration of his very low favorable viral load.......i assume he would be a very good candidate for treatment regardless of genotyping following an acute treatment protocol of SOC. exactly what would be the best standard and length of treatment i can not elaborate on but suspect again HR would have valuble insight. also getting a few opinions from hepatologists of their recommendations and compare. i will speculate here and guess in this situation of infection the genotype may not be important?
however identifying approx time and length of infection might provide time considerations if indeed his immune system naturally cleared the infection...but i have read of natural clearance of hcv can occur after 6 months of infection...but then if you know a positive infection has transpired the risks of treatment with his low viral load might be a strong consideration towards treatment now in lieu of watch and wait to see how the viral infection progresses.
for sure you both have some major choices ahead. "what would i do if me" questions are worthy and individual for sure. in my opinion...(oh dear) i would take the advice of your docs.....then again waiting for perhaps another month or two and re typing/measuring viral load might give a better advantage for more information without losing the valuable time limits of acute infection treatment protocols?...i think? something to discuss with docs at where that window limits are.
i hope i helped some here.....i feel so unable to give you your best advice but please know you have my support to review and research some of your sons choices, along with the many fine people that visit this forum. considering your son is 29 he surely will benefit form taking an active role in understanding hcv information and deciding his choices. as a well informed mom i believe you will be his guide here and not let him fall into a state of denial in this most important matter.
i personally welcome any of his questions and encourage them to the board here as we know how important and powerful information can be with hcv.
with my warmest regards...hope....and prayers to you both now.
from my limited understanding and upon finding a very good article on medscape released by the American journal of pathology dated 2007, it appears that a viral load of "29" is not enough to determine geno and sub typing. according to this article the best assay available that uses 5'UTR and also sequencing from the core region requires 4,810 IU/Ml as the lowest viral load to yield a geno and sub typing using the " versant HCV genotype 2.0 assay (LIPA 2.0 assay).
the article can be found http://www.medscape.com/viewarticle/561109_1
it would be nice to have HR confirm info as he surely is more educated in this regard!
my next thoughts would then be the consideration of his positive viral load of "29". a careful history of his factors for transmission would now be important in diagnostic/treatment considerations.
for example i assume all factors of false positive has been ruled out by your docs? if so.....then i would wonder next if his infection is acute vs chronic which would be defined by hcv infection over a 6month period.
if signs of infection greater than a 6month period of time and in consideration of his very low favorable viral load.......i assume he would be a very good candidate for treatment regardless of genotyping following an acute treatment protocol of SOC. exactly what would be the best standard and length of treatment i can not elaborate on but suspect again HR would have valuble insight. also getting a few opinions from hepatologists of their recommendations and compare. i will speculate here and guess in this situation of infection the genotype may not be important?
however identifying approx time and length of infection might provide time considerations if indeed his immune system naturally cleared the infection...but i have read of natural clearance of hcv can occur after 6 months of infection...but then if you know a positive infection has transpired the risks of treatment with his low viral load might be a strong consideration towards treatment now in lieu of watch and wait to see how the viral infection progresses.
for sure you both have some major choices ahead. "what would i do if me" questions are worthy and individual for sure. in my opinion...(oh dear) i would take the advice of your docs.....then again waiting for perhaps another month or two and re typing/measuring viral load might give a better advantage for more information without losing the valuable time limits of acute infection treatment protocols?...i think? something to discuss with docs at where that window limits are.
i hope i helped some here.....i feel so unable to give you your best advice but please know you have my support to review and research some of your sons choices, along with the many fine people that visit this forum. considering your son is 29 he surely will benefit form taking an active role in understanding hcv information and deciding his choices. as a well informed mom i believe you will be his guide here and not let him fall into a state of denial in this most important matter.
i personally welcome any of his questions and encourage them to the board here as we know how important and powerful information can be with hcv.
with my warmest regards...hope....and prayers to you both now.
If this is his actual viral load of "29", the count is too low to perform the genotyping.
I hope it is some sort of error.
All the best
I hope it is some sort of error.
All the best
I had a low vl of 96K. I was UND at 2 weeks and remained that way for my tx. I was advised to do 24 weeks. Completed! 24 week was UND also. Awaiting my 4 week post bloodwork which will be drawn on the 17th of this month. 1A here. He is young and low vl. Dont know rest of his case.
If the second test is not false, he has a good chance of clearing I would think as I did.
Keep us posted.
Shari
If the second test is not false, he has a good chance of clearing I would think as I did.
Keep us posted.
Shari
This sort of reminds me of the strange case of the '29' pcr as described by one of the early VX'ers. Not sure if it was Mr. E, APK, PLN or one of those in that early VX graduating class
Now that they have the knowledge about the genotypes, I'd say get one prior to treating. However, in the old days of Hep C treatment, we were treated w/o genotypes. My first treatment back in 1997, I was told, when I'd first heard the word 'genotype' on line, I was told by my gastroenterologist (not the one I have now), 'You don't need one, it's not necessary for treatment, it won't change that fact that you need treatment'. Point blank, end of story. Since it was my first treatment and I didn't know that much about the disease at that time, I went ahead and treated. Anyway, I'd say, get your son a genotype.
Susan
Susan
Have you requested a copy of the lab results yet to make sure they are reading it correctly?
A good TMA is Quest Diagnostics's "HCV RNA QUALITATIVE TMA". Alternatively, you could ask for Quest's "Heptimax" test. Sounds like you may hve to spoon feed your doctor's office on this.
A good TMA is Quest Diagnostics's "HCV RNA QUALITATIVE TMA". Alternatively, you could ask for Quest's "Heptimax" test. Sounds like you may hve to spoon feed your doctor's office on this.
my strangth,,ha ha...double dosed this week and melted into a few new pools to go with my outdoor water theme park.......rolleyes,,,,,,this INF is not for the faint of heart. Of course the news this week was tripply bad........but, whata ya gonna do.....not just.say the Our Father.....but mean it.......that;s all
he's 29.....with a 29 VL....yes I asked for a more sensitive, and a TMA, which got me a weird look...
I can't see treating without knowning v geno---
also, since first test was UND and 2nd was 29...begs the question which one is false\\
he has no symptoms, we testes the whole family to be safe, after Iwas diagnosed, and retested him this last month, because the first test was questionable...
he was kinda told the same thing, knock this out now while its this low, and you may skate by on half a year treating, insteadof a whole year...which sounds retty good seeing the e=alternative is to forever have the sword of damalcles//
I can't see treating without knowning v geno---
also, since first test was UND and 2nd was 29...begs the question which one is false\\
he has no symptoms, we testes the whole family to be safe, after Iwas diagnosed, and retested him this last month, because the first test was questionable...
he was kinda told the same thing, knock this out now while its this low, and you may skate by on half a year treating, insteadof a whole year...which sounds retty good seeing the e=alternative is to forever have the sword of damalcles//
Never heard of such a low viral load. Actually, one of our members, "TallSusan" had one very low, but not even that low. I mentioned to her that with a viral load that low, she might go UND with one or two peg shots. Turns out that a famous Boston Doctor told her the same thing.
Is this the first time your son was tested? Was he diagnosed as acute or chronic? Has his file been reviewed by a liver specialist (hepatologist) or a GI? Have you ordered a sensitive re-test, something like Heptimax that goes down to 5 IU/ml tor rule out a false positive? (maybe not finding a genotype means there is no virus?)
I wouldn't jump into a plan of action until you knew more about what is going on.
-- Jim
Is this the first time your son was tested? Was he diagnosed as acute or chronic? Has his file been reviewed by a liver specialist (hepatologist) or a GI? Have you ordered a sensitive re-test, something like Heptimax that goes down to 5 IU/ml tor rule out a false positive? (maybe not finding a genotype means there is no virus?)
I wouldn't jump into a plan of action until you knew more about what is going on.
-- Jim
I can't speak to this, but it might get more noticed if I pop it to the top...best of luck with this, thinking of you and what a trooper you are! give me some of your strength! bottle it why doncha?
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
