Greatbirds question on my viral load

[franke566]

I had my blood checked for a Viral load and it came back positive 115 or>115.  I took the lab results to my Gastroenterologist and he said that I would always present a viral load and not to worry about it.  I thought .  My Psychologist ordered the blood study because my PCP only orders liver panels and they always look good.  Everytime I see my Gastroenterologist he wants to do a colonoscopy and an endoscopy. . an echo of my liver etc.  according to him, my neurologist and my PCP as long as my liver is functioning I should be happy seeing as how I am f4 on the fiberspect 97% fibriotic with no occlusions-yet.  So help me to understand-should I be concerned about the positive 115 and does that mean thousands, millions, what?  Thanks franke566

[franke566]

thank you all.  I managed to get another older test result  also from Quest-drawn on 8-18-08.

I find it inconsistent w the other test draw I presented to the forum yesterday.  In the left hand corner this reads:

                    the patient samle tests reactive with a high S/co ratio: > OR = 8..0.
Samples with high S/CO Ratios have been shown to repeat as positive using a different Methodology 95% of the time or greater. Therefore. additional testing for verification of the result is not recommended.  (CDC MMWR NO. RR-3,2003).

It also says signal to cut off                    15.38 H                               ,1.00


sorry above the  15.30 it reads out of range and above the 1,.00 it reads referance range.

then it goes on to show  lipid panel all in range etc.
when it comes to CBC all are in range except Hemoglobin 12.1 out of a 13.2-17.1
and Hematocrit 38.2 out of a 38.5-50.o range which doesn't look very low to me.

at the end of the  page bottom line it reads;

Hepatitis C Antibody                                Reactive

I find no test or diagnostic codes anywhere.  jmjm530 I have today requested of my PCP a test and told my doctor to be sure to put Hepitimax Test and I handed it to the Quest lab-had my blood drawn, double checked "is this the Hepatimax Test?" AND IS THIS ON THE REQUEST?  I did not know about the HCV Code then:07054. anyway I think I got the labs drawn that all of you suggested I get.  I am just wondering if my last labs were different because this the older one says clearly signal to -cut off etc.; not that I know what in blazes that means.  I am my 3rd day off of Lyrica and the swelling in my hands and feet is going down.  I was also told by PCP that I do not have fibromyalgia-now get this-because there are 15 pressure points that have to be tested 1st to meet the criteria!

Anyway he will not make an appt with a Hepatologist until he gets this lab back but even then he said I would first have to go to a Gastro and then "HE" will make that determination. so I feel helpless again.  I know it's not a conspiracy against me but it sure feels that way sometimes.  Thank God I found this place!  I want to cry but you know, sniff, men don't cry-right?  sniff, have something in my eye!  

[jmjm530]

Only Have HEPTIMAX on the test scrip to get the right test.
---------------------------------------------------
I believe you also need a diagnosis code on the rx form which is different from a test code. The diagnosis code for HCV is: 07054

[portann]

What Jim and Apache said seems the best explanation at hand, given the info you've provided. Get re-tested and see a hepatologist at Baylor or elsewhere.

A Heptimax test is simpler, IMO, just because there's less chance for confusion. Confusion can be annoying for everyone. The different tests can be confusing for your medical team as well.

I'm really sorry to hear about your troubles and hope you can find some resolution.  Since you say you are currently taking Lyrica,  Prestiq, Betpace and Xanax and have now been prescribed Lasix, Xopenex, Advair and Spiriva, this is quite a number of pills to manage. Have you and your doctors thoroughly checked for interactions?

You said this morning:  "I am only angry about one thing.  The doctor did not tell me there is an outside chance the drug might just kill me.....knowing what I know now...no way, I'd rather die with a fishing pole in my hand...."

I think you need to do your best to remain hopeful and make your next step a verification of whether you are negative or positive via HCV testing. My bet is that it's a false positive.

Apache, are you around for some marathon top five tips for nutrition? It's this weekend.

[apache1]

Franke, don't get all worked up over this.

Like I said, my bet is a false positive
and you are still SVR as you have been for 4 years.

Go for a heptimax by Quest.
Only  have
HEPTIMAX
on the test scrip to get the right test.

apache

[franke566]

Thank you all so much! As you can see by my posts I've been up all night fretting over this and you all came thru for me.  I am calling my PCP for an appointment with a Hepatologist right away.  Then off to bed.  Again, thank you. franke566

[nygirl7]

It wouldn't be the first time a gastro was wrong would it :(

I agree you need to followup with this and find out exactly what is going on.  My post tx PCR came back as a false positive (60).  The doc said that number made absolutely no sense and 4 weeks later it would have been much much higher than that as a virus wouldn't just make a few copies. He said wait a month and retest.  Of course I was sure I had failed..........I tested a month later and it has been negative for two years now.

Was it remnants or did the virus try to come back after I stopped the interferon but then my immune system took over? Was it truly just a false positive test? I'll never know but I was just glad I retested and was UND and SVR.

The doctor would be 100% incorrect in saying that a low VL doesnt' matter...........even one stupid virus can become millions in just no time at all.

[apache1]

portann
I dont know, have the same questions as you.

hoping our resident vl test expert...Jim would get us out of the Forrest on this...lol

apche

[apache1]

After brushing off the tree limbs, I agree with Jim,
go to a Hepatologist...

Like I said above, your gastro seems confused about the definition of HCV SVR and the implications of being positive for any HCV viral load.

I do believe and hope another test will show you to be negative for HCV vl.

apache

[apache1]

Well you have 2 numbers, confusing...
but to answer your question, 115 iu/ml means there are 115 international units of virus per mL of blood.
115 iu/ml with a conversion factor of 2.5 equals 287.5 copies of virus or 287.5 individual virions per M/L blood.

This is a very low number, unusually consistent with a false positive after you have been SVR or UND.
That is why you need an additional confirmation test.

Many hepatologist always request another test when a positive vl test follows a negative test.

apache

[jmjm530]

There may be a bit of looking at the trees when we should be looking at the forest here.

Regardless, it appears you are positive for the virus.  And I also believe that you stated that your Dr. says this is normal (testing positive) even for an SVR. This is absolutely wrong.

So if that is the information you're getting, you need to see another doctor. Best doctor to see is a liver specialist (hepatoloigist). They can be found at your larger teaching hospitals.

[franke566]

I just called the # I sent you 713-887-5829 and EZ is the Quest Diagnostics Nichols site code here in Houston, Tx

[franke566]

but do the #s mean in the thousands or millions or what-Please!  what does the value 115 mean?

[portann]

I just posted this on Franke's other thread and also couldn't find  EZ. Is this the new twist quantitative test or the old twist test and then why does it not simply state the quantity?

Method
Quantitative transcription-mediated amplification (TMA)
Linear range: 5 to 7,500 IU/mL
Alias: HCV viral load
CPT code*:  87522

http://www.questdiagnostics.com/hcp/intguide/jsp/showintguidepage.jsp?fn=TS_HCV_RNA_QuantTMA.htm

[apache1]

Well don't know why the greater than and less than marks did not post correctly the 2nd time...
in the above sentence it should read greater than and less than marks

[franke566]

thats what I have on the paper and a phone # [phone] sent by Dr Alan Glombicki-Houston Digestive Diseases 7737 Southwest FrwySte840 Houston, Tx

[apache1]

Correction should read:
Are you sure that the     marks and all numbers are exactly as on the test report ?

Also I would get another test to confirm the results
Get a Quest Heptimax done.

apache

[apache1]

Ok.

I am very familiar with Quest. Have had many different VL done by them.
After just looking at the Quest test menu, found this is a newer test, or at least a new twist on a old test.

As far as I know Quest's TMA use to be only qualitative,  Except when used in conjunction with their Heptimax test that combined the pcr down to <50iu/ml than used tma to go to <5. ....As far as i know this is a new twist in HCV testing at Quest.

Hepatitis C Viral RNA, Quantitative, TMA
10073

Never seen test results like yours posted above from Quest.
By definition a quantitative test can put an exact number on vl up to the limits of the test . In this test the limit seems to be <5
Are you sure that the   marks and all numbers are exactly as on the test report ?
In your other post/thread with the same info the lab location  is also noted as EZ.
I could not find the lab in Quests directory ?
Lab is not noted on the above report.

apache

[franke566]

here is the Quest diagnostics report:

test name                              in Range            Out of Range   Reference Range  lab

Hepatitis C Viral RNA
    Quantitative TMA
         HCV RNA ON TMA                                     >115            IU/ML
                                                                                                  Referance range:
                                                                                                  less than 5

HCV RNA ON TMA                                               >380                Referance Range
                                                                                                   Less thaqn 0.7

then there are a couple of paragraphs beginning with detection of HCV RNA by TMA is used to Quantitate HCV Viral Infection, to monitor therapy and the success of antiviral therapy and then alot of stuff about reverse transcription of viral RNA.  Thanks frank566

[apache1]

Yes. I understand most HBV patients do become UND. But not always.
It is not uncommon and also in the HBV guidelines that <2000 vl is considered a low level infection. Not necessary to treat. It is not uncommon for this low level vl in HBV occult infection or any low level infection to be present in HBV.

What I am saying is this is NOT Normal for ANY SVR HCV patients.

apache

[FlGuy]

Yes, post the word-by-word results of that viral load test.  If you do not have the paper, have the doc office fax it to you.

If, indeed, it reveals a viral load (by the way, >115 is a strange result) then you should refer the Gastro to a Proctologist to get his head out of his butt.

If you are 60 and have not yet had a colon scope, it may be time.....

[JennyPenny]

"This is HCV not HBV...seems many gastros get them confused. If it was HBV, he is correct."............................................

No, he's not correct. HBV patients can and do become PCR undetected.

[apache1]

Post exact test results, just how they are worded on test results page.
This will help us give you an exact answer. What genotype where you ?

But...If I understand your test results correctly,HCV RNA viral load over 115 iu/ml ?
then one of 2 things come to mind
1) False positive, (very likely)
2)Very low level infection that I have never seen from anyone on any forum or support group, but have read about in studies.

First thing to do is get another test done. Get a test from one of the big labs if possible. They have standardized test that are easy to understand.
Never seen a >115 test ??? Is this a private lab or a University lab ?
=============================================================
quote from Franke:
"Gastroenterologist and he said that I would always present a viral load and not to worry about it. "
=============================================================
Huh ?...Run that past a Hepatologist.
This is HCV not HBV...seems many gastros get them confused. If it was HBV, he is correct. With HCV this is not normal in any guidelines I have ever seen or heard. HCV SVR is not detectable 6 months post eot. That means NO viral load. None, NADA, ZIP.

apache

apache