Confused - SVR 4 years later now it's back?

Hi all.. this board was so helpful to me in the past and helped me achieve sustained response in 2003 (pegulated interferron with ribaviran).  After 6 month and 1 year follow-ups, I still had undetectible virtal load in quantitative tests and was told by my Dr that I was cured and no need for further testing

But, at the persistacne of my wife, I decided to ask for a quantitative titer test.  Well, I just got results yesterday from my first quantitive test since 2004 (1 year follow-up) and I am showing a titer of 3.1 log, or 1300 copies/ml which is very low but quantifiable.  My titer at pre-treatment in 2003 was 300,000 copies/ml with an elevated ALT (around 95), where my ALT is now 18 and normal.   It has been almost 5 years to the day of completion of treatment

I have been searching the ends of the internet to understand this more and will be meeting with my specialist shortly, but any insight from this knowlegable group would be appreciated.  I found an article here, http://www.hivandhepatitis.com/hep_c/news/2005/010305_b.html, stating that very load viral loads still exist in patients with SVR, below dedectable limits in most cases, but that there is no CURE just a control of viral load below detectable limits.  I was also sick at the time (standard seasonable viral infection), and suspect that my immune system was a bit compromised and therefore the HCV may have been dedectable at the time which  maybe a second test may not prove this.

What can I make of this.. does this make any sense?  Studies show less than a 1% chance of this happening after SVR, but with such a low titer and normal ALT\liver function tests so different than pre-treatment I'm not sure what to make of it.

Thank you all and GOD bless you.

[Bill1954]

Hi Ike,

What you are experiencing is extremely puzzling. The durability of SVR still remains extremely high; as you mentioned, over 99% statistically.

Have you considered test contamination; i.e., has another confirming quantitative test been ordered? The odds of contamination are quite low, but they do exist.

The possibility of reinfection (I know, dirty word) needs to be explored, although I’d think it unlikely given your *very* low viral load.

Others that follow this phenomenon more closely are sure to step in and contribute more, but in the mean time, take a look at the following web page:

http://www.medhelp.org/health_pages/Hepatitis/Occult-Hepatitis-C/show/54?cid=64

This is a compendium of studies that explore “occult HCV”. It was assembled by TnHepGuy and others here and there are several people that will want to discuss this further with you.

So sorry to here the news; I’d insist on another highly sensitive viral assay to confirm the presence of HCV RNA in serum. One good test to consider might be Quest Diagnostics “Heptimax”; basically a two-stage test that uses TMA methodology and quantifies to <5 IU/mL.

Take care for now—

Bill

[Ike]

Bill, thanks so much for the direction and information...   I will be spending much time reading on this subject  It is so great to just hear someone knowledgable on the subject and there first impressions, most of those around here know much more than the standard GP on the subject.  GP told me to get previous tests to compare viral loads...as long as titer is lower than original SVR tests than I am fine.  

Anyone who has studied this virus like most on this forum know HCV in serum means you have HCV regardless of titer load.

[DoubleDose]

If there is truth to the research that claims that HCV remains at sub-detectable levels in the body after SVR, then your case could easily be understood.  If you go back to undetectable on the next test there will be two explanations.  A false positive is one, (which I would really question, in light of the specific amount found on testing), and the other is that your system allowed a small 'blip' in the 'controlled' viral load, causing it to temporarily increase slightly to a currently 'detectable' level.  Maybe if we had even more sensitive PCR testing available today, all SVR's  might show some very low, controlled, viral load on serum testing.  Many people do not wish to consider this explanation, but in light of all the research, I think that it is very plausable.  At any rate, I would hope that your viral load returns to sub-detectable levels on the follow up test.  This is a disturbing subject, and is still being studied by the best researchers in the world.  

DoubleDose

[dranurag]

I always believed in the theory of viral suppression as against total eradication. Your case proves it. I feel so sorry for you. But still the report may be wrong because i think without tx the viral load should multiply many folds in no time. How come you were so low.

[Bill1954]

D²,

“…If there is truth to the research that claims that HCV remains at sub-detectable levels in the body after SVR, then your case could easily be understood…”.

While I agree in theory with your statement, it doesn’t take into account data that *still* supports the durability of SVR, does it? I think a “controlled blip” in VL is a plausible explanation, but wouldn’t it have to be ephemeral in nature? The durability of SVR still *statistically* stands, I believe.



Ike,

Some recent reports have shown up to approx. 70% of long term SVR patients show positive for very low level HCV RNA in hepatic parenchyma, while showing serum RNA negative. Most of the data on this subject is intellectual in nature; there doesn’t YET seem to be any clinical significance to this, however.

Continue to monitor this thread; I have a hunch there will be many more contributions forthcoming :o).

Meanwhile, try not to get your dander up yet- easier said than done, I know; your liver, not mine; but your SVR might not be compromised yet.

Take care-

Bill

[marsfreek]

i have ben around awhile and we tx about the same time. mine came back 6 months post tx.stayed level at 500,000 till january this year
now doing the daily infergen thing.
  the telling tale is not at 1 year it is at 18 months. there is a2% recurance between 12 and 18 months then it drops to 0

[DoubleDose]

By the way, I did not say a thing debating or dismissing the durability of SVR, merely that the PCR results showing very low viral loads, more than a year after SVR, just might be the 'blip' in suppression levels for the low level persistent virus remaining after SVR  (if the research proces to be valid).  I agree that SVR seems to be durable,  BUT that does not at all preclude the SVR itself from consisting of a now 'controlled, very low level, mostly undetectable (or more accurately a sub-detectable) virus.  I think that this may be what most people generally would refer to as being 'in remission'.  This is likely the reality.

The frequency of persons on this board alone who have demonstrated that brief 'blip' in detectable load, usually right after ending therapy, and then going on to become fully SVR, leads me to believe that this is more a real phenomenon due to the virus being  under constant suppression, than to believe that it is due to 'false positive' testing.  The pattern has been too similar, and too frequent, for it to all be chalked up to invalid test results.  

But, again, let me state clearly, that this viral behavior does not at all contradict 'durability', it only demonstrates that once our systems learn to contain and control the very low level remaining virus after tx, it rarely, if ever, lets it entirely back out of control again.  Maybe a little 'blip' every here and there, but it seems to quickly get it back under control again.

How else to we plausibly explain the low level positive PCR tests that we have seen from a variety of forum members, right after finishing a fully undetected tx, and then proceeding to have a subsequent clean, or undetectable test result?  Do we just 'assume' that they all must have been false positives?  That is a VERY unscientific conclusion, that takes what we want to believe about SVR, and applies it to our logic:  We think:   after finishing tx, and going six months or a year being undetected, the virus must be eradicated.  So therefore if someone shows a brief, or individual test result that is quantitatively positive, then it MUST be a false positive.  Circular logic, using a pre-supposition to prove a point.  What if the pre-supposition is totally wrong?  

That is what the researchers are trying to determine!  We will eventually see what the reality is.

DoubleDose

[Bill1954]

DD-

So let me try this again. Are you suggesting that SVR (Sustained Viral Response) might be more accurately described as SVR (Sustained Vial Remission)?

My apologies, this is essentially my first journey into this topic; I’ve seen you and others discuss this for a couple of years now, but haven’t paid much attention until recently.

I *have* noticed a number of patient-reported low-level viral assay results various points post treatment, most notably 30-day post. I know of a gal personally from a local support group that experienced the same; one result serum RNA negative, followed several weeks later by a specimen result of 240 IU/mL. This was repeated *again*, resulting in serum RNA neg. Another assay followed, the results of this one are still pending.

Thanks for the insight; it’s much appreciated. One thing for sure; this is proving to be one sneaky disease. Hopefully, others will chime in with there thoughts and experiences so that “Ike” has some more information to assimilate.

Thanks for sharing your view,


Bill

[marsfreek]

that makes sense to me, I was undedetect until 6 months post tx. It then came in at 500,000 (had been as high as 10,000,000 pre tx)  stayed around 5 to 600,000 for right at five years and broke through on me last January to 4,000,000  this would seem to me to possibly be the same thing but with a detectable viral load.
     what do you think?

[mremeet]

Very sorry to hear of what might be a relapse. Hopefully it's just some sort of testing error. And it is good to see that apparently your ALT is still very low at 18, especially considering that it was about 100 when you were actively infected. The very low ALT suggests it might be testing error in the form of a false positive - maybe. But I couldn't help but notice in your last post from 2004 that you mentioned some testing ambiguity at the conclusion of your treatment. You said:

"Finished interferon treatment and was a responder at 24 and 48 weeks.  After completion, enzyme levels have been in normal range for last 6 months (before treatment, running at 100 or so).  Went in for my final results on thursday, and was told indeterminate.  Here's what they said

2 Qualitative tests were called indeterminate.  One test was negative, the other positive

2 Quantitative tests were both negative

I don't know what to make of this...I asked my Dr do you feel better or worse then before the results, and she said better.  She says the qualitative can provide a false-positive.

But, based on my research, seems like a false negative is more likely.  Could it be possible that after being off the medicine for 6 months that my viral load could be floating around 100-200 copies\ml and not replicating.  Just enough to fail a qualitative but have it not show up on quantitative.  I am quite concerned and feeling it didn't work."

Based on what you've discussed 4 years ago, and what we see today in your labwork, it sounds like another possibility is that you were falsely declared an SVR at that time. It is true that some people conclude treatment with a very low viral load that persistently remains undetectable - but occasionally undulates above the limit of detection (depending on sensitivity of test). And some people maintain that low level chronic HCV infection for years afterward, and yet they usually test PCR negative and often have normal liver enzyme levels. I don't know if that's what's happening with you, but it sounds like a possibility. I would be retested with a very sensitive PCR, right now the most sensitive is 2 IU/ml, and that's what I would use. I would have myself tested periodically, probably monthly for the next several months. I would also have my HCV antibody levels checked to see if they have dropped to levels lower than they were prior to your treatment (assuming you have that data available). Typically HCV antibody levels will decline over time in those that have cleared HCV either naturally or via drug treatment. If your antibody levels remain at pre tx levels, that may be a clue that you remain chronically infected. If you do not have pre-tx HCV antibody levels, then I would establish a baseline value now and track it over the years to see if it declines.

Hope you get it sorted out, good luck.

[motheroffour]

My husband's is bouncing around between hundreds with the highest being 63,000 after two tx.  He's been "drug free:no Peg/no Riba" for more than a year.  His big time university doc thinks it's mutated virus that doesn't get totally killed off.  Doc says "it'n not the norm for the viral load to remain so low so long in the absence of the drugs."   Husband is going for try three in a couple months but going 72 and switching from PegIntron to Pegasys.  We'll see.  

[Ike]

mrmeet, I didn't even remember the details behind this indeterminate declaration, thanks so much for pulling that out of my history.. I just remembered it as indeterminate and not as a positive and negative testing conflicts.  This does give more insight into this, and potentiallly I was right with my exact thoughts as the low level of titer and possibility of a false SVR.   Obiviously, qualitative and quantitive at retest weeks later came back negative and also at 1 year.  Also,

The antibody quantification is also an excellent suggestion and yes, I was part of an NIH study for peg intfr with ribaviran and have intensive blood work regimen throughout treatment.  I will compare this to 5 years ago.

Thanks all for the thoughts, kind words, and suggestions.  I now have a grocery list of questions to take to Columbia next week.  I will surely update everyone on-going.

[Ike]

The reason for the 2 quantitative and 2 qualitative tests at the time was that I was in an NIH study during tx.. so 1 quantitative and qualitative test was done by columbia presbyterian as part of tx via labs in-house and 1 quantiaive and qualitative test was done by NIH labs as part of study enrollment.  I assume different labs, different low titer levels of granulatity in detection.  The NIH lab returned the positive result.. for the Dr told me good news than later that same day called me to tell NIH results came in and had an indeterminate result.  Therefore, I needed to come back in and they were rerunning the blood work to confirm Columbia's in-house labs result.

The follow-up tests were done by columbia presbyterian only and declared negative.  Again, just more information for those interested in my history and theories.  Potentially the NIH study labs had a much more granular level of detection that columbia in 2004 didn't.

[DoubleDose]

All of which make it that much more mystifying in light of your one year undetected PCR testi result.  If you were indeed still 'actively' infected, you would never expect to see a fuly undetected result at one year after ending tx, and also having been undetected at the finish.

I still have to believe that all of this points to a strong possibility of SVR being equal to 'remission, and that small and brief re-occurances of very low level viral loads might be more normal than any of us realize.  The may just have to test you on that 'off' day when the virus is kicking up a little, showing itself slightly above the limits of the testing.  Maybe on most typical days, when we usually have our tests done, the virus may be at 1 copy per 100 ml.of serum, or something similarly far below the limits of standard test detection.  

Maybe the virus is really ALWAYS there in the blood of SVR's, just not often 'seen' by our current PCR testing.  If you go in on an 'off' day, you may just get that rare 'spike' in low level viral load, such that the test registers a very low result.

Just my conjecture, anyway.

DoubleDose

[Mr Liver]

What was the sensitivity of the tests five years ago compared to the newest one ? Lower detection limits on your latest test could be an explanation why you were declared undectiable  at EOT and one year post tx PCR. Just a few virions per ml difference and that is all it would take to explain your situation.

Maintaining normal alt/ast, (and usually most other biochemical markers) while still infected upon treatment completion is called a sustained biochemical response. It can last for months or years. I've had one for 6 years. It's the next best thing to a cure.
Mr Liver

[Bobby1952]

   As long as a persistently elevated ALT/AST is now normal and the Viral load is so low I woud say that the Virus is not affecting you. With a VL of 1300 copies/mL I would not be concerned. It is low enough to not cause any damage whatsoever.
   At the end of TX 3 monrhs ago I had a VL of 4000 copies/mL. I tested again at 6 weeks post TX and was UND. So i have a possible  simular situation as you. My GI couldn't understand the 4000/copies/mL while I still had the Interferon in me and then UND 6 weeks later without the Interferon.
   Maybe my body just learned to fight the virus off. Hoping this is the case.

Bobby

[DoubleDose]

I have to say that just the few cases discussed above, all go totally contrary to current wisdom about SVR and HCV viral behaviors.  How can someone be detected at EOT then become Undetected, and arguably SVR?  How can the virus 'hang around' at almost undetectable levels???  For a year or more??  Without a true full scale reoccurance of the infection?  Are we, as SVR's, really just individuals whose system has figured out how to keep the virus at minimal, 'invisible'  levels, or 'in remission' as some might describe it?

  Could the virus really be ALWAYS detectable in the blood of SVR's, if we had testing that could detect extremely low levels of replicating virus.  Is eradication a valid terminology for SVR, or is it more of a 'controlled sub-detectable virus', in reality?  I sometimes think that the exceptions disprove the rule, and that so many odd cases of viral loads coming and going, and people becoming SVR on a delayed basis, etc. all cast much question on our current notions about SVR.  

DoubleDose

[mremeet]

Ike - I think mrliver hit on the crux of the matter and that matter is test sensitivity. HCV RNA PCR testing has greatly advanced in its sensitivity in the last few years. Just a few years ago it was still common for treating doctors to use much less sensitive tests than are more commonly used now. Over time researchers and treating doctors have found that more sensitive tests are appropriate because of situations just like yours. There are multiple studies that have shown that if a more sensitive PCR test is utilized during treatment, and also used just prior to ending tx, then the relapse rate can be significantly curtailed. In other words, the researchers found that many patients could test UND using an old test (sometimes as high ~650 IU/ml or so) at certain points in their treatment, maybe even defining them as RVR. And then also test negative throughout tx with that same low sensitivity test, only later to relapse. And if those same patients would have been tested with the much more sensitive tests commonly used today, these patients would have exhibited a low-lying infection or an on/off appearance of the virus throughout their treatment. For example, someone who RVR'ed (UND at week 4) with the 650 IU/ml test, may have only tested UND by week 10 using a 2 IU/ml test. And someone who would have been UND from week 4 onward all through treatment, might have only gone negative at week 8 using a 10 IU/ml test and have exhibited a weak positive at week 15 and week 20. If that patient had known that they actually did not go UND by week 8 (or even later) and that there was a brief weak re-emergence of the virus midway through treatment, then they could have extended tx or perhaps increased dosage etc in order to preemptively thwart a relapse. So the aforementioned studies proved that better testing equates directly to higher SVR rates. And I suspect if you had been tested with a 2 IU/ml test during your treatment, your borderline viral presence would have been picked up on all along.

So getting back to your situation, all other things being equal, the qualitative tests are often more sensitive than quantitative tests (although not always). It’s interesting to see that the “ambiguity” came from the qualitative results. It could be that the qualitative was more sensitive than the quant, and it was trying to tell you something. If you have copies of your old labwork, you can investigate and see what the sensitivities were to help shed some light on it either way. But regardless, it’s looking like you do have a low level infection now, albeit relatively benign. You said earlier that you’ve probably been infected since birth, and for 30 some years now. And yet you have (1) F0 fibrosis, (2) virtually no inflammation, and (3) a very low pre-tx VL of 56,000. You did have elevated enzymes pre-tx, but now 5 years later they are perfectly normal and your VL is even lower at 1300 IU/ml. You sound like an odd case that’s relatively unusual in the realm of HCV patients. You started out with very minimal disease severity/damage and now after tx, although SVR status has seemingly escaped you, your already low grade infection has been converted into an even lower grade occult-type infection. You test positive for the virus at a very low VL, but your liver enzymes are perfectly normal. And seeing that you started out with virtually zero liver damage/inflammation (when you had 100 ALT’s), it seems very likely your liver has remained in near perfect condition. So although it is unfortunate that you don’t fall into the nice cleanly categorized SVR status, it sounds like for whatever reason, your body has learned how to cohabitate with the virus very well. I’ve seen this in other people who have had the virus since birth. I don’t know why it happens, but some people who were infected by birth just develop this benign coexistence with the virus, while others also infected at birth develop cirrhosis in their teens.

Anyway, I wouldn’t be too worried about it or feel the urgent need to rush into another round of treatment. Seeing as you’re getting on so well with the virus, you could easily wait out the newer drugs currently in development. You could probably rout what virus you have left with a 12-24 week regimen of telaprevir (or equivalent) and SOC (when telaprevir becomes commercially available). Especially with that tiny starting VL of yours.  I suspect with telaprevir in play, you’d go UND within hours.

[merryBe]

I'm beginning to see your logic, and see what HR means when he says the only  way to know how many fish for sure are in a pond is to drain the whole pond.

All tests are of a small quantiy of blood only...they don't take into account that more "fish" as hanging out in the deep end of that pond...or, in this case, more HCV could be in the liver cells in a much higher ratio than what is blood borne and only measured in blood.

Maybe my analogy of chicken pox has some validity here as well. everyone who has had it... forever carries  it...yet only 1-2% will develop it again, in the form of shingles.

It could be, were we to test for that virus, we might see it vary from 50 to 5000 in a normal noninfectious adult. Of course, someone would have to volunteer for lots of spinal taps for that, since it hangs in the spinal fluid, so we likely will never know...but obviously the immune system keeps the spinal fluid from ever getting beyond that critical upper number gain...as long as the immune system remains intact.
Obviously then we might conclude those that succomb to shingles lost their immunity by something that compromised their immune system which then allowed for the symbiotic virus to return to infectious status.
So then,
Until we get to a place where we can find a safe, inexpensive way (which liver biopsy is neither) to tell what remains in liver tissue even when the blood appears clear, it seems reasonable to think that one may carry this, or any virus ever contracted, in minut' amounts, held in check by an immune system that has learned to produce enough antibodies to hold in check hundreds of similar viruses/bacteria/protozoa every day.

I think one question might be, and we have this with my son, if someone is keeping a virus at bay, say between 20 and 1200.....is it even wisdom to treat, as that may just be the baseline for that person...the point at which their immune kicks in  and knocks the virus back down to double digits.If they have no measureable liver damage, or with better drugs on the horizon, one cannot help question the wisdom of SOC.

the occult     question is certainly a fascinating one.
The question we now face is whether to treat our son at all at extreme low numbers, knowing he may have cleared on his own...and that a VL of 20 may be just what his base load tops out at given a healthy immune system.

Ike, I'd think long and hard about the possibility of occult resisduals and whether the body might find and remain at a minimal level, where given proper diet and health care one might be better to carry a small VL, assuming it remain small, than to put oneself through repeated and highly toxic treatment.
One  could make a case that the damage a small VL (in ratios of  damge to organs) might not be as deleterious as what occurs during a round of SOC tx.
then too we have discovers some tests can be slide contamination so unless you know yours was the first test run all day you would certainly want more verification before rushing into anything.

I'm really thankful for this forum, my doctor was ready to treat my son on ONE test result, a VL of 27 with no detectable genotype. for 6 months.
a. how to know that is not machine error when no RNA could be found?
b; how to know that he did not clear at birth and this was his residual load
c. how to know treating   for 6 months what is probably a 1 a if it is really even there, would be long enough when one year is standard SOC
d. how to know if this is his occult load left over from birth and he has not got an active disease at all.

answers given by doctor.....
a.no way to know
b. no way to say
c. it sould be long enough (some comfort?)
d. what's occult...never heard the term

my conclusion: most docs are not up on the subject of occult or residual virus, no one should treat not knowing genotype...that's just plain foolish, if they can't find enough virus to get a genotype...then there's probably none there.
AND until one knows for certain one has a disease that needs treating....and is active and destroying your liver...then to treat seems like insanity!!

BTW on any given day your body can and does test positive for various cancer marker. that is because everyday your body makes cancerous cells, and your body's immune system recognizes and eliminates them.
Now, I still test positive for a cancer I had 15 years ago...that is, I test with as many markers as the average woman has everyday. You see those antibodies...and a few of those cells are always going to be there....in everyone as it turns out.
But, my docotr did not say "lets treat your cancer again...because the markers are within normal range.
what is lacking with HCV, because not all have agreed that occult/residual HCV may be the norm, is there is no standard marker range so to speak.
that's not to say there should not be, or won't be one day...but at present everyone panicks at 2 virions. Perhaps one day this will change and we may need to consider  whether it's even a reasonable goal in light of the fact that everyone exposed to polio or chicken pox etc. still carries antigens, markeres, even some small amounts of virus...so perhaps this thinking now needs to extend itself to the HCV world.
I mean,     no one wants to think they could carry this for life, but as I said, I still carry the cancer markers...and don't have the disease...so maybe it's ok to think outside the traditional boxes here as well??

maryB

[DoubleDose]

You are indeed thinking outside of the box!  I applaud you for that.  Too many people just want to repeat the dictums handed down currently by the medical establishment, without examining them closely, thinking for themselves, or looking more deeply for more complex answers.  Much of this has to do with anxiety I believe, and it turns into a case of something like denial.

You know, "my doctor says its gone and eradicated" so I know that is true!".  Well, doctors can change their story, as new information comes out.  Just look at all the great 'wonder drugs' they have been prescribing for cholestorol, heart problems, and other conditions, drugs that now turn out to be not only 'not entirely safe', but in some cases deadly!  I bet they will be doing a 'disclaimer' when they prescribe those drugs in the future!

Your son is an interesting example to add to the above discussion.  It just points out how little we really understand about HCV's real behaviors, and how to address such idiosyncratic cases.

If the virus can exist in people at 20 copies/ IU, or 300 copies, or 10 copies, etc. over long periods of time...then what is to say that it does not exist at 1 copy per 100 IU, or some other minute amount, under the level of detection, in SVR's, and in those who spontaneously clear.  Many want to claim that the virus is either "there" and reproducing actively, or it is "gone".  I think that the evidence has not yet fully supported that thesis.  Maybe it is either "there, actively", or 'there, in some other, controlled form".  I do not believe we have the final answers at all, at this point.

All of the anecdotal stories illustrated above, and alluded to, all point out how unexplained the behavior of this virus really is.

Tell us more about the history of your son's testing for HCV.  What about antibody tests, PCR's, etc.  and at what ages, etc.
I agree that now is not the time to treat.  You do not know what you are dealing with yet, and treatment can cause its own long term consequences, as many of us have discovered.

Good to hear from you.  I am seeing my Endocrinologist in two weeks to review the Pituitary tests, and issues (IGF results, etc).  I will let you know his take after my meeting.

DoubleDose

[merryBe]

thanks, well, of course resistance is futile...(the Borg are coming....) I resisted the idea to begin with, but am beginning to see the light.

I'm thinking the day approaches when so many markers will be known that the line between prevention and overreactive treatments may become very fine.

GLAD to see you follow up on the HGH....mine just arrived for the month....and it means my double fractured toe will heal....nice to be reaping the benefits of science and being nerdy enough to read up on stuff. The people who have gotten back to me have both tested at half of what's normal for their age....so something in denmark doeth stinketh.
let me know how your tests come out!!

[DoubleDose]

If you have any links to research or articles tying HCV or Tx to low HGH or Pituitary insufficiency, please do list them.  I would love some ammunition for my Dr. visit.  If you know of any others who are doing the HGH regime, for HCV related problems, and if they are seeing any improvements, please let me know as well.  My endo is very conservative, but he will treat.  He has my TSH down to 0.75 to 1.0, over the past four years (since about 8 months after my SVR) using Synthroid.  The only problem is that the Thyroid treatment has seemed to have little impact on my overall symptoms.  I am hoping that the Pituitary is the missing piece of the puzzle!  Step by step we will find out.  My bigger fear is that the lingering sub-detectable virus, after SVR, just might be the culprit.  Maybe it causes the immune system to remain out of whack, and over-reactive, thus causing a range of AI, or 'Lupus-like' symptoms.  If that is the case, I would be concerned that there would be few remedies to change that situation.

Remember that most of the people who clear HCV spontaneously, after an acute infection (without any drugs or treatment), from the studies that I have read (two studies) all seem to have "HCV-like" extra-hepatic symptoms many years after their spontaneous resolution of the virus.  My concern is:  Why didn't they return to normal health, since they quickly got 'rid of' the virus, and only had the infection for a relatively short period of time.  Sounds to me like ongoing, persistent HCV infection playing havoc with their systems.  I can come up with few other explanations for their long term symptoms, which included lots of fatigue, joint pain, and brain fog, along with depression and anxiety.

Sorry to drift off subject, but I think all of this ties in to the bigger unanswered questions.

Thanks for your input.

DoubleDose

[merryBe]

I did the research for HGH before belonging to any forum, so unfortuantely I will have to go back and refind everything (typical brain fog..I earmarked nothing back then..

however I will try and refind..

THE GOOD NEWS....here's a new one I just found:

Takahashi Y, Iida K, Takahashi K, Yoshioka S, Fukuoka H, Takeno R, Imanaka M, Nishizawa H, Takahashi M, Seo Y, Hayashi Y, Kondo T, Okimura Y, Kaji H, Kitazawa R, Kitazawa S, Chihara K.
Division of Endocrinology/Metabolism, Neurology, and Hematology/Oncology, Department of Clinical Molecular Medicine, Kobe University Graduate School of Medicine, Kobe, Japan. ***@****-u.ac.jp

BACKGROUND AND AIMS: Nonalcoholic steatohepatitis (NASH) is an emerging progressive hepatic disease and demonstrates steatosis, inflammation, and fibrosis. Insulin resistance is a common feature in the development of NASH. Molecular pathogenesis of NASH consists of 2 steps: triglyceride accumulation in hepatocytes with insulin resistance and an enhanced oxidative stress caused by reactive oxygen species. Interestingly, NASH demonstrates a striking similarity to the pathologic conditions observed in adult growth hormone deficiency (AGHD). AGHD is characterized by decreased lean body mass, increased visceral adiposity, abnormal lipid profile, and insulin resistance. Moreover, liver dysfunctions with hyperlipidemia and nonalcoholic fatty liver disease (NAFLD) are frequently observed in patients with AGHD, and it is accompanied by metabolic syndrome. METHODS: We studied a case diagnosed as NASH with hyperlipidemia in AGHD. The effect of GH-replacement therapy on the patient was analyzed. RESULTS: Six months of GH-replacement therapy in the patient drastically ameliorated NASH and the abnormal lipid profile concomitant with a marked reduction in oxidative stress. CONCLUSIONS: These results suggest that GH plays an essential role in the metabolic and redox regulation in the liver.

I'll start a new thread with research just for you..how's that??

[DoubleDose]

Thanks so much.  I think a new thread would be very helpful, to everyone out there who may not have considered this possible link to long term physical problems.

DoubleDose

[susan400]

For this reason, it might not be a bad idea to have EVERYONE get a sensitive PCR test at 18 months post treatment, even if they tested SVR at month 12.   IMHO.   I mean it's one simple blood test and if your viral load had somehow or another managed to come back full force, wouldn't you want to know so that you could be more cautious about things, like being liver-friendly, etc?   I know for myself that if I EVER went undetected, I would want to be testing for a last SVR up to 2 year out, since I've had such a problem with getting rid of this stubborn virus.  

Ike, I would definitely get a second test at a different lab and verify the results.  It is a good sign the your LFT's are so low.

Susan400

[redrodeo]

     Well I am just exhausted after attempting to read all the above postings. As a pharmacist I am used to many clinical terms and details but you guys are just amazing...
     As a HCV sufferer myself I have found the whole thing frustrating. I have geno 3, don't drink for 12 years, don't smoke 54male male. I have attempted tx 2 times before with 2 different doctors and wasn't able to tolerate the s/e's and ended tx early . But I also couldn't tolerate the doctors not really knowing what they were talking about. That does not make a person feel very hopeful. Anyway for the last 5 to 6 years I have been going to the "specialist-guru" So I thought I would try tx one more time and go for the entire 6 months. I started Dec 2 and justed finished a few weeks ago. But the reason I am posting here really is to let you know LABS ARE NOT ALWAYS CORRECT. Get retested. While on tx I had my viral levels checked quite often. Early April it was undect
then May 1 the test came back HCV positive 18mil!!!! Of course I was insane all my enzyme were below 20 and yet I was positive.  So we checked it again around May 6 and it was negative. Apparently it was a lab error and several other pts had false pos.
The only really good indicator I ve had was being undect at 3 1/2 wks.
     I get cjecked again in a few wks we will see???? nAt this point I am not feeling much better. When does your energy come back?
     My prays are with you Ike.
     Red

[willing]

definitely an unsual story! Since you have the benefit of so many pcr test results between nih and columbia it definitely seems worth going back and checking the detection limits/test-manufacturer etc. (and make sure you compare iu - to iu, not clear if you  meant iu or copies above). Since this was done in  research setting they may have also saved some vials at -80. This would make it possible to retest the '04 serum levels vs the current. Also, if the old vials are available,  sequencing and comparison of  then and now  rna would rule out re-infection.

I tend to believe post-SVR persistence has been pretty much established and, in conjuction with SVR durability, is not a big health issue. The important thing is that your VL is no longer at 300,000 and your enzymes are in range and that's close enough to cured enough for one lifetime. The remarkable point seems to be that in your case the post-SVR balance is at a much more elevated level (high enough to be detectable on a simple serum test) - I'd expect there's quite a few HCV researchers who'd like to look at your immune profile in detail. Are you currently taking any immuno-suppressant meds?