HCV Negative at 4,12 weeks / Positive at 24

[Rosebud41]

I need some information on what to do and what to expect next.
I called my nurse because it had taken more than two weeks to get my test results.
After checking she indicated  I was positive again at 24 weeks.
She said she didn't know why the test didn't come to her, but when she found it  and I had tested positive.

Knowing these folks they've probably had the test for a week.

Rosebud41

[newleaf09]

Retest, then worry about it if they come back with a positive again.

[Kathy73]

Rosebud: I'm so sorry!!! Perhaps they were wrong? Can you ask to be re-tested? I don't trust these so-called professionals. I switched doctors mid tx because of their shoddy irresponsible work. Maybe they made a mistake.

[Rosebud41]

Yes, the nurse told me to stop the medication and  I told her I would after I am
retested. I will see the doctor on next Thursday.

I am glad you suggested that because she sounded like I was from Mars when I
made the request. She reminded me of how powerful the meds were and to remember she told me to stop.  Actually, I asked her if I could remain on until the next test and the she said stop.

Rosebud41

[Kathy73]

I agree with newleaf! What does it hurt them to re-test? Mistakes have been made before and then what would she say...oops?

[nygirl7]

Of course I would ask them to retest as well - being UND at week 4...was that a very sensitive test?  It's hard to believe that it is relapse - although it's possible I would wonder myself if it was a false positive somehow.  I had one at post tx 4 weeks and have been SVR ever since.  

Seriously if they had the test why wouldn't they call you - why was it missing or there for over a week or whatever the excuse is? How long would it have taken them to realize this fact?

We will all have our fingers crossed big time!!!!!!!!!!!!

[Rosebud41]

You know there was confusion about week four...maybe it was not that sensitive.

I did  tell her I would continue tx until I could be tested next week. She said I should stop
the medication but I explained until I got some more results that was not happening.    
She said the doctor is out of town and a resident, who I know well and was a fellow at Mayo, would see me since I didn't want to take the news from her.

Rosebud41

[GreatBird]

IMHO you should ask for copies of all your tests. That nurse doesn't sound very reliable.

[Rosebud41]

I've mentioned that to the doctor and he's said they're just swamped.

I kind of think they could use a professional development inservice.

What is IMHO?  I might be a little slow this evening...

Rose

[GreatBird]

IMHO=In My Humble Opinion  :)

There's no excuse for them not getting you copies of your records. My doctor makes them for my himself every time I see him.

You might try requesting your test results in writing. They might have a form for you to fill out or you could send them a letter.

[Andiamo1]

What test was it?  I assume a PCR, but was it a heptimax?  What was the viral load?

Some tests are prone to false positives, but when that happens the viral load is very low,  usually under 50.  If the viral load was north of 10,000, it is unlikely to be a false positive.

[Rosebud41]

The only thing I know is it was a PCR.

Have you heard of this situation many times before?

I am getting the re-test regardless.

I have never had anything as stressful a dealing with getting this treatment
because of low neutrophils and now I have this problem.

It makes me want to scream.

Did  I use to see your name here a lot in the past. (like maybe a year ago).

[kitkat14]

I would definitely get retested and not stop taking my meds until I go the results back.  If they misplaced your results then you just never know, it might be your test results from a year ago before you even started treatment that she was looking at!

[desrt]

I had something similar happen at week 24. It wasn't even a false positive on the test. My doctor's office had read the sensitivity of the test (<24) as the test result. I'd had the PCR drawn along with my usual CBC, CMP, TSH and when I picked up my copies a couple days later, is when they told me this. I knew PCRs don't come back that fast otherwise I would have freaked out worse than I did. Still, had a couple bad hours until I figured out the phone number for LabCorp's subcontracting lab in LA. They told me they'd just received the sample and hadn't even started the test yet.

[Andiamo1]

I used to post a lot. specially last year when I ended my treatment.

False positives, while not all that common, do happen.  All the ones I have seen have been low viral loads, usually just about the threshold of the test.  I am not disagreeing with your conclusion and the advice of others to keep going until you are sure.

I would definitely call your doctor and get the name of the PCR and the viral load.  It might ease your mind if the number is low.

[Isobella]

You've gotten some really good advice, so I just wanted to add that my heart is going out to you.  Tx can be stressfull enough without these extra worries.

I'm so glad you stayed on the meds....way to advocate for yourself!  

Hang in there...we're all pullin for ya =)

Isobella

[Andiamo1]

I second Izzy's comment

[nygirl7]

Testing experiment one two three.

Sorry for the interupption guys!

[Rosebud41]

Thanks for your support!

I appreciate all the sentiment and all the encouragement you have offered.

I really don't know what to think. I am not putting too much stock in the possibility

that the test is flawed in some manner. But, I think it would crazy not to repeat it.

I certainly would be relieved if  there was some kind of mistake.

But just to be safe let me say I do believe in God and I believe there is a solution for the

situation. I have done all that I could do to fight HCV. I  believe once you have

exhausted everything you know to do you rely on your belief system until you are given

the next move of the "board of life."

If  you or someone you know prays then please get busy.

LOVE, ROSE

[Rosebud41]

Yes, were you getting ready of  to go one some big adventure, trip or safari or something.

Thanks, for your suggestions.

I can't really remember the detail. Did you have many complications during you tx?

I'm glad to hear you're doing well.


Rosebud

[Rosebud41]

I'm beginning to understand just how flawed treatment can be.

I don't know what the retest will accomplish, but I definitely agree with you that it needs to happen.

Unfortunately, over the past couple years or so I've had it explained to me (by experienced Forum members} you have to check and double check the "professionals."

I have had to stay on top of this situation far more than I would have ever thought.

Thanks,

Rosebud

[Rosebud41]

Thanks for sharing your experience.

The medical system is flawed big time.

If just the people in the forum have experienced so many blunders think about the whole
population.

I'll let you all know the outcome of this little adventure.

Rose

[Rosebud41]

Were you making a funny?

Testing does seen to be an experiment.

Rosebud

[YuK]

So very, very sorry about this news.  Some labs are offering "on-line" test results.  Maybe you could at least get your results, if your lab offers it.  Do you have all the other lab results - when you were UND?

I'm surprised the nurse is legally allowed to prescribe or "un" prescribe meds - and with a telephone call ??!.

Get those lab results and get a retest.

stacie

[sweetpea333]

I'm so sorry for that devastating news. It's likely the doctors have made a mistake with that last test result. When I queried my husbands Hep C nurse if he will be tested again if he achieved a RVR, she looked at me as if I had asked the strangest of questions. She said to me, 'What's the point of being tested again, if he achieved a RVR it will remain that way throughout the treatment'. So if you have been undetected at 4 and 12 weeks, why would it show up positive at the end of 24 weeks? Unless your medication had been reduced at some point after week 12, to flair up the Hep C again, I've no idea why at 24 weeks it would show up positive.  Something sounds not quite right to me. I would definitely insist on a recheck. It seems to me the so called medical professionals are not always so professional. Good luck Rosebud, and please insist on that recheck.
                                              Sweetpea333