Guiding myself

[Cyn621]

I haven't posted since Oct. 11 when I asked for advice about quitting incevik a few days early. I did end up quitting 5days early. I personally, just couldn't handle it. I have posted  a few times about issues with my doctor who was really not very supportive through this entire process (and sometimes clueless).  Right now, I'm worried about my viral load:  

At 4 weeks my HCV RNA IU/ml  was <43 and my HCV RNA ,QN, PCR was <1.63 log IU/ML.  My doctor told me at the time I was UND and called an early responder.  At 12 weeks, it was the same exact number.  He told me at the time, those numbers basically mean I'm undetectable. Today I read a post where someone said they were 43 and still not undectable and now I'm really worried if he knows what he is talking about.  Any advice?  Cyndi

[fretboard]

Hey I came across a previous thread that specifically addresses your issue.  Apparently your doctor was right, glad to hear it!!  Read below the link about your <43 level.  Good luck with your 6 month tests!!

http://www.medhelp.org/posts/Hepatitis-C/PCR-sensitivity-range/show/1295609

The Heptimax is a 2 part  TMA not a PCR. I am looking for a PCR that only measures
actual RNA without including dead virus particles.
Already know I am UND wk6,wk9 <43IU
TMA is more prone to false positive and cross contamination especially
in  the low range so I prefer a PCR.
If there is none of course I will have to do the Quest TMA Quant <5

I did a Real time PCR in New Mexico in Feb. It was a Taqman and went down
to <10 can not find that in NY Metro.  

[slideman]

In my case the 4wk test came back UND is what my Dr. told me. And then before I had my 12wk test the Dr. said they had not performed the test She had ordered. So she wrote another order I took with me and hand delivered it to the lab on my way to be drawn, and made sure we all were on the same page. A week later the test came back und. Then my Dr said "oh look they did this test wrong again. We needed qualitative and quantitative tests, and they only ran one". Well that pissed me off so I set out to see who had dropped the ball on something so important to me. It turns out, I go to the lab that draws my blood. They send it to a hospital to have it read, well what my lab dose not know is that the Hosp sends it to Mayo to have it read. So my Dr thinks the lab is conducting the tests and are screwing it up, they think the hosp is goofing it up. In reality the Mayo Clinic is running the best test we could ask for and when they say its und then they mean und!! What a mess that was for a few days, and such confusion and an emotional rolercoaster at my house. Well as it turns out I couldn't have been any happier with the result, but it sure seems to me everybody could have communicated with each other in a more efficient
manner. And once again its me being proactive and taking charge of things that got it all straightened out, not the Dr's office.
Alls well that ends well....LOL so far alls well.
Please dont stop posting!! I think a good dose of can-do-man's tell it like it is approach is just what I needed to hear more than once on here and its kept me on tx when things got bad!!! Thanks can-do-man, I hope we can meet someday, I'll buy dinner, I owe you big time!! Lots of others to. Hector comes to mind, willb, ect...Love you all, God bless you for all you do!!!

[willbb]

Cyndi..As cyclist says ,good idea to call the lab,and would just add that in the event they will only give the info to your doctor, he will be able to (and may have already) got further verification on your test)

The important point is that   Quest on the  report for the" COBAS (R) AmpliPrep/Cobras (R).  Tagman (R) HCV test kit"
  does not distinguish between a result under the limit of quantification (43) and one under the limit of detection (10 or lower). This information is available from the Roche CAP/CTM output. Quest simply does not report it on the lab report,

Again..your doctor may have recieved the further verification(hence him relaying to you  being UND.). It should be able to get  straightened out for you without too much trouble

Good luck.
Will.

[flcyclist]

If you want to talk directly to the laboratory that did your test, contact the location listed on your report.  Following is a link that lists Quest Diagnostics Major Laboratory Facilities with their phone numbers.  Sometimes it helps to hear directly from the source to remove any doubt.   Someone should be able to explain your results.

http://www.questdiagnostics.com/brand/company/b_comp_us_facilities.html

I've heard some reports don't list "Undetected", but only "< 43 IU/mL". If listed as "< 43 IU/mL Detected", that mean something very different.   A quick phone call might clear this up for you.

[Cyn621]

Thank you for all the posts.  I do have copies of my blood test the information I posted above is exactly how it reads on my test results.  The blood work was done by Quest and my doctor specifically told me at 4 weeks that I was undetectable but the sheet does not say UND.  The note at the bottom says:  This test performed using the COBAS (R) AmpliPrep/Cobras (R).  Tagman (R) HCV test kit.  Tomorrow I will call his office to get clairfication but I'm sure he sill tell me the same thing.

[eureka254]

It's always wise to be cautious, be it information provided by a confident and dictatorial attitude or by a questionable and suggestive voice.  I often have to remind myself that words on the screen don't have a *tone* and meanings can frequently get misinterpreted. :)

I don't think folks need to be fearful here... we just all need to think twice before we hit "post".  We also all learned in kindergarden that sticks and stones... and what we're discussing here on this forum presumes we've at least gotten through childhood... and in reality no one can physically harm you on the internet... you're safe from that perspective :).  However, keep in mind that your doctor gives recommendations that can do you harm... so in that vein of thought, they could be a lot scarier than anyone on this forum.  Folks need to learn to stop being spoon fed, be it by this forum, or their best friend, or even their doctor, and be discriminating.

Glad that you're not afraid to speak up, pcds.