Aa
To: bill and nygirl:
To: bill and nygirl
I had no idea you could have antibodies and not the virus. How can the DRS tell the difference? My GI dr says i have a titer of 561, no liver infalmmation, normal alt/ast, and RNA type undetectable. Stage 2 liver fibrosis via BX, with peri-portal fibrosis (whatever that means). The GI, and PCP say I'm untreatable due to the Hep being integrated into my body/ immune system has stopped (or, i ask, never began?) fighting it.
In short, I'd like to know if I might be antibody positive, and virus negative. Like I said, this is the first I've ever heard of such a thing.
I had no idea you could have antibodies and not the virus. How can the DRS tell the difference? My GI dr says i have a titer of 561, no liver infalmmation, normal alt/ast, and RNA type undetectable. Stage 2 liver fibrosis via BX, with peri-portal fibrosis (whatever that means). The GI, and PCP say I'm untreatable due to the Hep being integrated into my body/ immune system has stopped (or, i ask, never began?) fighting it.
In short, I'd like to know if I might be antibody positive, and virus negative. Like I said, this is the first I've ever heard of such a thing.
I had no idea you could have antibodies and not the virus. How can the DRS tell the difference? My GI dr says i have a titer of 561, no liver infalmmation, normal alt/ast, and RNA type undetectable. Stage 2 liver fibrosis via BX, with peri-portal fibrosis (whatever that means). The GI, and PCP say I'm untreatable due to the Hep being integrated into my body/ immune system has stopped (or, i ask, never began?) fighting it.
In short, I'd like to know if I might be antibody positive, and virus negative. Like I said, this is the first I've ever heard of such a thing.
I had no idea you could have antibodies and not the virus. How can the DRS tell the difference? My GI dr says i have a titer of 561, no liver infalmmation, normal alt/ast, and RNA type undetectable. Stage 2 liver fibrosis via BX, with peri-portal fibrosis (whatever that means). The GI, and PCP say I'm untreatable due to the Hep being integrated into my body/ immune system has stopped (or, i ask, never began?) fighting it.
In short, I'd like to know if I might be antibody positive, and virus negative. Like I said, this is the first I've ever heard of such a thing.
Thanks for all your typing, and taking the time to help me out here. You're right, the waiting and wondering are driving me crazy. I haven't heard back from the GI yet, but I hope to soon, maybe by tomorrow. I was wrong about the date of my next scheduled Appt with him, it's july, not june, 22nd that I go in--and I'm only going to drive the 150 miles and waste a day if it seems the nurse can't answer my questions. If I can have repeat VL and RNA typing ordered by my PCP, that's what I'll do to save time and money. In the mean time, I try to forget about it since there's nothing I can do anyway., I cover/clean my wounds, which are plentiful, being a wood carver, sterilize the bathroom--The most likely site in my mind where I can pass along an infection accidentally--and try to put it out of my mind. *shrugs shoulders* I don't know what more I can do about it. I forgot not to ask for patience, because if there is a God, she/he will not grant it, but test me further to give me plenty of opportunities TO BE patient. D*^^M!!! :D I haven't forgotten how to laugh at myself, which is a good thing, I think. Again, thanks a lot, and I'll be sure to keep an eye on my watchlist, and check back as soon as I hear from the GI or his nurse.
BFN
BFN
I dont really think there is any key piece of information that they can look for. It's really all an educated guess on all our parts really - the sum of lifes experience in trying to decide. Could be a tattoo from years go past. Could be the meds. Could have been even perhaps an innoculation from childhood or a dentist that didn't sterilize properly.
That being said it does drive us all pretty crazy - the never really knowing. You liver damage isn't THAT advanced but certainly if you were just exposed - and did clear the virus in six months (the active period in which this can happen before you are 'chronic') then you'd know it was more likely the meds.
It's just impossible to know unless it was a specific thing that happened (ie; a needle stick at work, a one time IVdrug use) even then it would not be 99% or anything but if you had no other real obvious way to get it you could surmise.......you know what I mean?
I hope they call you back soon so you know either way and it can stop driving you crazy. Hepc is a disease of always waiting for something.....we learn lots of patience!
That being said it does drive us all pretty crazy - the never really knowing. You liver damage isn't THAT advanced but certainly if you were just exposed - and did clear the virus in six months (the active period in which this can happen before you are 'chronic') then you'd know it was more likely the meds.
It's just impossible to know unless it was a specific thing that happened (ie; a needle stick at work, a one time IVdrug use) even then it would not be 99% or anything but if you had no other real obvious way to get it you could surmise.......you know what I mean?
I hope they call you back soon so you know either way and it can stop driving you crazy. Hepc is a disease of always waiting for something.....we learn lots of patience!
OK, I called the GI, I go to him on June 22, and in the mean time, I expect to get a call back from his nurse about the VL. I just went searching for info on periportal fibrosis, and this is what I found: http://www.meddean.luc.edu/lumen/MedEd/orfpath/fibrosis.htm . Doesn't tell me much, but it may mean more to you all, who have more experience and knowledge. NyGirl, how long a while, I know you said already it's almost impossible to know, how long have I had this active infection, so as to cause such advanced liver damage? I've been taking NSAIDs, like I've said before, for about 11 years, and have been taking mental health meds even longer. What is "The KEY piece of information" my GI looks for to tell if I have damage from all the meds over the past 14 years?
Thanks for wasting your time in such an ignoramus. LMAO
Thanks for wasting your time in such an ignoramus. LMAO
PS: I've sat for more than 17 tattoos (not including multiple sitting tattoos, and cover-ups) since 1994 or so to this year, and have had more than 15 piercings in the past 5 yrs or so.
Good just call and ask. "Perfect" liver enzyme levels do not mean anything at all regarding having it or not.......you can have perfect levels (as did my husband) but he had is since before it was a named disease. Ditto the ultrasound - that really means that you don't have tumors or growths or liver cancer but not much otherwise as the biopsy already has said you have stage 2, so you are stage 2.
I just can't imagine how you could get to that far advanced without the virus being active for a while. Still even if it's not the reason you need to know - suppose it is just from medications, certainly you'd have to start wiping them out somehow before you have cirrhosis from them, right?
Better safe than sorry.
I just can't imagine how you could get to that far advanced without the virus being active for a while. Still even if it's not the reason you need to know - suppose it is just from medications, certainly you'd have to start wiping them out somehow before you have cirrhosis from them, right?
Better safe than sorry.
Aight, I'm gonna call and ask about it. As far as I know, and as far as the GI is able to be understood, my viral load is 561--he uses the word "Titer", AND refers to it as my viral load. I asked what geno type I was at the Appt. and he said the lab report says it was "undeterminable due to not enough virus to test in the sample." That was about 6 months ago, and had recent Liver enzymes test at an ER, which "could not have been more normal", according to the ER Dr. I went to the ER because of abdominal pain, and it was found to be an ovariazn cyst. The also performed a complete abdominal/pelvic CT scan, which showed a perfect liver, perfect gall bladder, perfect aorta, etc...perfect everything except the cyst.
Given that all seems so "NORMAL" and "PERFECT", I just had to wonder if I really have this HCV monster. As far as whether or not I knew that fibrosis is caused by inflammation, no, I didn't. Makes me wonder more now, "Why do I have stage 2 liver fibrosis", and "Normal & Perfect" enzymes, pictures on CT and Ultrasounds....?" What am I doing/what is this virus doing differently NOW, so as to not be causing active damage to my liver? I take about 15 prescription meds per day, none of which have changed in the past year since DX except no more NSAID's.
PS: DX was last summer during a routine physical/CBC, liver function: (I've been taking liver function tests off and on for about 5 yrs since being put on certain mental health meds.) My then PCP found **juuust baaarely** elevated enzymes, and ordered an HCV antibody test, Positive. I started seeking treatment about 2 years ago--different state, different PCP--for nightsweats, which set off a series of tests for things like thyroid, TB, and other chronic infections, all neg. Then I moved, got a new PCP, went for annual physical last summer, and you know the rest from there, pretty much. It all still seems surreal, and unreal; I feel fine.
Anywhow, gonna head off to call GI and seek further info on VL, and ask when I can be retested for RNA type--logically to me, more time goes by, more VL to test for RNA. As far as initial infection, I can trace it back to about three years ago after a dirty---visibly dirty---tattoo from a bad shop. No other risk factors but tattoos and that I used to donate blood plasma.
Thanks all, BFN
Given that all seems so "NORMAL" and "PERFECT", I just had to wonder if I really have this HCV monster. As far as whether or not I knew that fibrosis is caused by inflammation, no, I didn't. Makes me wonder more now, "Why do I have stage 2 liver fibrosis", and "Normal & Perfect" enzymes, pictures on CT and Ultrasounds....?" What am I doing/what is this virus doing differently NOW, so as to not be causing active damage to my liver? I take about 15 prescription meds per day, none of which have changed in the past year since DX except no more NSAID's.
PS: DX was last summer during a routine physical/CBC, liver function: (I've been taking liver function tests off and on for about 5 yrs since being put on certain mental health meds.) My then PCP found **juuust baaarely** elevated enzymes, and ordered an HCV antibody test, Positive. I started seeking treatment about 2 years ago--different state, different PCP--for nightsweats, which set off a series of tests for things like thyroid, TB, and other chronic infections, all neg. Then I moved, got a new PCP, went for annual physical last summer, and you know the rest from there, pretty much. It all still seems surreal, and unreal; I feel fine.
Anywhow, gonna head off to call GI and seek further info on VL, and ask when I can be retested for RNA type--logically to me, more time goes by, more VL to test for RNA. As far as initial infection, I can trace it back to about three years ago after a dirty---visibly dirty---tattoo from a bad shop. No other risk factors but tattoos and that I used to donate blood plasma.
Thanks all, BFN
If the word "titer" is used, it is probably antibodies, not viral load. Antibody titer.
Call and ask your doctor - I can't imagine why they would bx a person who didn't have hepc or some serious reason to have one done. Also you do realize that inflammation is what causes fibrosis right?
While NSAIDs could raise your liver enzymes I'd think in order to get up to stage 2 liver damage you'd have to have taken tons and tons of them to get there without having hep. With hep it could do the trick without it I just don't know.
I'm not sure 561 is what? your viral load by PCR? How long have you thought you have had hepc?
While NSAIDs could raise your liver enzymes I'd think in order to get up to stage 2 liver damage you'd have to have taken tons and tons of them to get there without having hep. With hep it could do the trick without it I just don't know.
I'm not sure 561 is what? your viral load by PCR? How long have you thought you have had hepc?
My titer really is 561, no typo there. That, combined with an undeterminable RNA type made me wonder. Yes to the NSAID's. I was on them for about 10 years, nearly daily for degenerative disk disease of the spine.
By your GI and PCP saying your untreatable because the the Hep being integrated into my body/ immune system has stopped fighting it is absurd.
As the others have said, either you have the active virus or you don't but in my opinion you very likely do because you have a viral load (small but still present) and your liver disease has been diagnosed at stage 2. Acute hepatitis would resolve itself after 6 months and if your immune system fought off the virus and you are only left with antibodies I doubt it would have ravaged your liver in that short period of time. Could there be some other reason you have stage 2 fibrosis? Alcohol or drug abuse, overuse of Tylenol or NSAIDs?
I would be looking for another doctor because yours doesn't seem to know what he's talking about.
Trinity
As the others have said, either you have the active virus or you don't but in my opinion you very likely do because you have a viral load (small but still present) and your liver disease has been diagnosed at stage 2. Acute hepatitis would resolve itself after 6 months and if your immune system fought off the virus and you are only left with antibodies I doubt it would have ravaged your liver in that short period of time. Could there be some other reason you have stage 2 fibrosis? Alcohol or drug abuse, overuse of Tylenol or NSAIDs?
I would be looking for another doctor because yours doesn't seem to know what he's talking about.
Trinity
Also find out why they say you are untreatable - saying your immune system isn't beating the disease off is like saying you are positive.....there are lots of confusing things going on here.
Just call them up and ask them what your viral load is - it should be right in your file even an NP could look it up for you. This is one reason we should always get our own test results - that way you will know what is going on for certain.
Just call them up and ask them what your viral load is - it should be right in your file even an NP could look it up for you. This is one reason we should always get our own test results - that way you will know what is going on for certain.
There seems to be some confusion surrounding the ‘viral titer’. Simply ask for your HCV RNA status; if positive, then you have HCV. If negative, then quite you’ve quite possibly beaten the virus; it’s not possible to have HCV with negative HCV RNA results.
Bill
Bill
Hi there,
Yes, it’s very possible to be antibody positive (seropositive), virus negative. This suggests that the patient was exposed to the virus at one point, but managed to beat the HCV with their own immune response.
If this describes your status, then you don’t have active virus; and there should be no other actions required of you. You probably won’t be able to donate blood, and organ donation might be an issue’ speak with your doctor about these issues.
Obtaining life/health insurance might also be an obstacle in the future as well; although I think life insurance companies are beginning to review individual cases now.
Check with your doctor; the question you should ask is “what is my HCV RNA status; positive or negative”? If negative, then you’re in the clear. Good luck—
bill
Yes, it’s very possible to be antibody positive (seropositive), virus negative. This suggests that the patient was exposed to the virus at one point, but managed to beat the HCV with their own immune response.
If this describes your status, then you don’t have active virus; and there should be no other actions required of you. You probably won’t be able to donate blood, and organ donation might be an issue’ speak with your doctor about these issues.
Obtaining life/health insurance might also be an obstacle in the future as well; although I think life insurance companies are beginning to review individual cases now.
Check with your doctor; the question you should ask is “what is my HCV RNA status; positive or negative”? If negative, then you’re in the clear. Good luck—
bill
The GI, and PCP say I'm untreatable due to the Hep being integrated into my body/ immune system has stopped (or, i ask, never began?) fighting it. "
Maybe Bill or someone else can understand what this means I don't understand why you can't treat - after the first 6 months if you were not at zero VL then yes it's true that your body didn't successfully beat it off while you were in 'active' stage of the disease - but that is what happens to 80% of us and why we do treatment.
Maybe Bill or someone else can understand what this means I don't understand why you can't treat - after the first 6 months if you were not at zero VL then yes it's true that your body didn't successfully beat it off while you were in 'active' stage of the disease - but that is what happens to 80% of us and why we do treatment.
Well with stage 2 liver damage and a positive viral load you aren't just carrying the antibodies. For 20% of the population that gets hepC their own immune system will beat the disease off. They are left with the antibodies but no viral load. But that would happen within six months of being infected before you are chronic and have developed liver damage - unfortunately it would appear that you are now chronic.......sorry :(
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