Author Topic: How to Stay NONDETECTED? (Read 16683 times)

JackN · « **on:** February 21, 2016, 09:22:50 am »

Hi All,

I am so glad I read here where people have done the following to stay NONDETECTED, (some I had not even thought of). I have throughout treatment started to throw away toothbrushes way quicker than before (I am doing so once a week or if gums bleed I toss that brush), bought new nail clippers, razors, even hairbrushes, and separated my soap from my spouses soap in the shower, as well as constantly cleaning with bleach.

Aside from the more serious (such as handling of blood products, etc), what are you doing to ensure no reinfection. I want to know if I need to add anything to my list of what to do and not do.

Thanks!

gnatcatcher · « **Reply #1 on:** February 21, 2016, 09:52:49 am »

Jack, here's what I did, FWIW. Given that my week 4 labs showed undetected, I continued to use my old toothbrush, etc., until my last (84th) pill, figuring that Harvoni was still on the job. On that final day of the 12-week treatment, I threw out my toothbrush, razor, and sinus rinse equipment. and I sterilized nail clippers, metal nail files, facial-hair scissors, tweezers, etc. I sterilized them just that once. My next labs were 12 weeks after the end of treatment, and I was still undetected.

Also FWIW, I'd had HCV for >30 years before it was diagnosed, hence I took no precautions during all those years, yet spouse didn't catch the HCV. (I occasionally used the wrong toothbrush by mistake.)

Summary: you've been a lot more thorough than I've ever been.

Gnatty

P.S. Congrats on the nondetected!

JackN · « **Reply #2 on:** February 21, 2016, 10:49:18 am »

Thanks gnatcatcher! Appreciate it

Philadelphia · « **Reply #3 on:** February 22, 2016, 03:28:03 am »

I threw out toothbrushes once I'd become UND but did no more than that. Lazy, that's me.

AussieRosa · « **Reply #4 on:** February 22, 2016, 04:32:47 am »

I've been changing my toothbrush every week just to make sure. I asked the ID doctor about precautions regarding reinfecting myself and he said neither he nor any of his colleagues have ever seen a case of someone reinfecting themselves via their toothbrush. He said I could change to a new one at EOT if I liked. I was a bit shocked by what he said as we're told toothbrushes (and my gums bleed) are a vector of infection.

JackN · « **Reply #5 on:** February 22, 2016, 08:28:50 am »

I agree, interesting AussieRosa. I spoke with my doctor about if and why there are relapses, and she said only if I was reinfected would I relapse, so in their minds that would be the only way. Didn't have the conversation about whether or not all the virus was gone (like having a blood result too low to quantify etc, and if it was really gone when said NONDETECTED. I did, however, email my doc to ask if my NONDETECTED meant 0 or if the value was below the quantified level the test could go. She emailed back and said 0!!!

So a toothbrush that scratches gums and makes them bleed, I'm going to continue to throw out

BillT · « **Reply #6 on:** February 22, 2016, 10:45:36 am »

Hi Jack,
I guess all of us had a bit of paranoia about not reinfecting ourselves.I went to the dollar store and bought a bunch of new toothbrushes(4 for a dollar and I actually like them),razors,and cleaned everything also.That was pretty much it.I think once we go undetected it doesn't matter anymore but I kept at it until the EOT.You'll be fine so just keep doing whatever it is that makes you feel a bit more comfortable.

Lynn K · « **Reply #7 on:** February 22, 2016, 07:21:05 pm »

Personally I changed my toothbrush once when it was normal time to change my toothbrush. Still have the same fingernail clippers.

Likelihood is very low probability

But whatever makes you feel better

dragonslayer · « **Reply #8 on:** February 22, 2016, 07:51:26 pm »

Quote from: JackN on February 22, 2016, 08:28:50 am

I agree, interesting AussieRosa. I spoke with my doctor about if and why there are relapses, and she said only if I was reinfected would I relapse, so in their minds that would be the only way. Didn't have the conversation about whether or not all the virus was gone (like having a blood result too low to quantify etc, and if it was really gone when said NONDETECTED. I did, however, email my doc to ask if my NONDETECTED meant 0 or if the value was below the quantified level the test could go. She emailed back and said 0!!!

So a toothbrush that scratches gums and makes them bleed, I'm going to continue to throw out

Hi Jack.. While its very unlikely that anyone will infect themselves with their own personal effects, it does no harm to do so and might make you feel more secure.

As far as the virus goes, HCV doesnt really work like that.. It doesnt hide like HIV, and the DAAs being used today work differently than the old regimens. In order to live, HCV must replicate.. Today's drugs prevent the virus from doing so.. Because the virus is a rapidly replicating one, an undetected result which sustains over a couple of months is almost 100% sure to be gone. Otherwise, the viral load numbers would have increased significantly.. Its one of the reasons some people are low level detected at EOT, and even, in my case, detected at 8 wks post treatment, but UNdetected at 12 wks post, and destined to stay that way.

JackN · « **Reply #9 on:** February 23, 2016, 10:53:18 am »

Thanks all. I guess my real question is how/why is there a relapse amongst some when at the EOT there was an NONDETECTED status. How the heck does it go from NONDETECTED to relapse if O means O on our labs? Seems confusing to me. How can anything replicate when there is nothing to replicate (unless there is a reinfection)??

gnatcatcher · « **Reply #10 on:** February 23, 2016, 11:13:27 am »

My understanding (I trust others will correct me or elaborate if need be) is that the lab test measures any HCV in the blood stream. If some HCV hid out in the liver itself, it wouldn't be detected. Once there was no more direct-acting medication coming after it, it would quickly replicate and re-enter the blood stream, where a future lab test would detect it.

JackN · « **Reply #11 on:** February 23, 2016, 11:20:09 am »

Thanks gnatcatcher- that seems to be the only feasible reason especially since we all have to have the addtl testing months later for the "cured" diagnosis when at EOT we are NONDETECTED. Kinda sucks some could hide out though.

Lynn K · « **Reply #12 on:** February 23, 2016, 01:40:17 pm »

Actually the lab test result the result is "Not detected" which does not mean zero virus. My test has a statement about the LLOQ being 15 IU/mL.

In English the LLOQ or lower limit of quantification is the smallest quantity of virus that can be detected by the test. Any amount of virus less than that the test cannot tell if there is virus present in the sample or not which is why the result says not detected not zero or virus eradicated. I don't subscribe to the idea the virus is hanging out in a specific location. There simply is not enough virus in the sample to detect.

This is also why we must wait after treatment has ended to see if those few stragglers under the radar of the tests capability to detect have survived and have gone on to replicate to detectable levels. The virus can reproduce rapidly so if a person has relapsed it can happens for 95% of people who relapse to do so by week 4 post treatment.

Hope that helps clear that up

JackN · « **Reply #13 on:** February 23, 2016, 02:31:49 pm »

Thanks Lynn. I specifically emailed my physicians assistant and asked her 0 or less than the 15 quantifiable (?) to be sure (that was what my limit of quantification was noted on the result).

She says 0. By golly, I hoped she's right since I've been slow to clear especially. Guess I am being paranoid

. Guess that's why there's that test afterward too.....thanks for the clarification. The test afterward didn't make sense to me if it was in fact 0, but you cleared that issue/question up for me nicely. Thank you.

Lynn K · « **Reply #14 on:** February 23, 2016, 03:04:01 pm »

I think she is probably trying to keep it simple for us lay persons.

Do you get to see your lab reports?

This is what mine says from the online app MyChart

Component Results, /Value/ /Std Range/
HCV RNA RT-PCR, QT /See Below/ / See Notes/
HCV Not Detected

HCV QNT TEST INFO /See Below/ /See Notes:

The quantitative range of the assay is 15 IU/mL to 100 million IU/mL
using COBAS(R) TaqMan(R) HCV test, v 2.0. The limit of detection (LOD)
and lower limit of quantification (LLOQ) for this assay is 15 IU/mL.
Results less than the quantitative range of the assay will be reported
as "HCV RNA detected, less than 15 IU/mL".

As far as I know no test report would say zero virus just less than 15 and either detected or not detected but like I already said "not detected" is not the same as zero virus

But the odds are in all our favor to beat this thing good luck on your treatment

JackN · « **Reply #15 on:** February 23, 2016, 03:59:15 pm »

Hi Lynn

It said NONDETECTED but only quantified down to 12 (so there is that chance there is still a few in me but I still have 3 more days on harvoni plus my lab was on the 17th). Fingers, toes crossed.

dragonslayer · « **Reply #16 on:** February 23, 2016, 06:25:01 pm »

Quote from: JackN on February 23, 2016, 03:59:15 pm

Hi Lynn

It said NONDETECTED but only quantified down to 12 (so there is that chance there is still a few in me but I still have 3 more days on harvoni plus my lab was on the 17th). Fingers, toes crossed.

Jack, just to complicate matters, in addition to LLOQ, there is also LLOD which is Lower Limit of DETECTION. So, in between the two, it can be detectable, but not quantifiable. Thats where you get the Detected, < LLOQ results. Undetected means < LLOD. As Lynn says, it does not mean Zero.. However, as I said earlier, often times, at EOT and slightly later, some folks will test Detected but < LLOQ or in some cases, even quantfiable but at a low level. The period to watch is right after EOT because if there is any activity beneath LLOD, and the virions are still vital, once the assault of the DAA meds is stopped, youll see a relapse in fairly short order. . Generally, when one gets this result, its virion particles and impotent virions that are being measured and destined to die off on the way to SVR.. Because this is a rapidly replicating virus, if there is truly potent virus alive but < LLOD, it will show up soon after with increasing viral load numbers.

Its why testing while on treatment doesnt mean much with these drugs. I thought I failed treatment because I was detected and quantifiable at EOT.. 8 wks later, I was Still detected, but had become unquantifiable. With a healthy replicating virus, my numbers wouldnt have decreased like this, so it was no surprise really that at 12 wks post treatment, it had become undetectable where it stayed.

Wishing SVR on everybody!!

BillT · « **Reply #17 on:** February 26, 2016, 11:57:42 am »

One other thing to remember Jack is that with Harvoni some people are showing a little bit of virus on their EOT test but go on to SVR12.A lot of us have wondered why that is,but it happens.We have a few theories but no facts.The only thing any of us can do is wait the 12 weeks and see if the treatment took.Also keep in mind is that very few are relapsing.Stay positive and see where you are in 3 months.

JackN · « **Reply #18 on:** February 26, 2016, 08:42:36 pm »

Thanks to all for the responses. Would it not be nice if the test could quantify all the way to 0 rather a <12 or <15. Sure would give us a sense of relief vs a what if all the virus is gone or not.

Took my last pill this morning. WooHoo. Will feel good, and weird in the morning to be free of that orange bullet that has, hopefully, saved my life and liver.

Always positive, just always curious

JackN · « **Reply #19 on:** February 26, 2016, 08:49:28 pm »

Also, since some still are still showing detection at EOT YET go on to NONDETECTED some time after EOT, the question arises, should we still avoid antacids for a period after the last pill??? My curiosity is at it again. Lol

gnatcatcher · « **Reply #20 on:** February 26, 2016, 09:29:21 pm »

I think avoiding the antacids was so that the Harvoni would be at full force. Harvoni has a short half-life, so a couple of weeks from now, there will be only a teensy-weensy bit of it still in your body. I can't imagine antacids would be a problem then (if they're even a problem the day after your last pill).

BillT · « **Reply #21 on:** February 26, 2016, 10:04:05 pm »

My understanding is that the antacids can be taken even during treatment.That's what I was told anyway.I believe they just recommend that they don't be taken within 4 hours or so of taking the medications because they affect the absorption of the meds.That's what I was told and I've based mine on.

Lynn K · « **Reply #22 on:** February 26, 2016, 10:05:23 pm »

The reason to take antacids carefully is to not interfere with the absorption of the dose your are taking right then.

Once you are not taking Harvoni you can take antacids as normal as you are not digesting a Harvoni pill

BillT · « **Reply #23 on:** February 26, 2016, 10:07:32 pm »

What Lynn said.

JackN · « **Reply #24 on:** February 26, 2016, 10:08:21 pm »

Cool

Lynn K · « **Reply #25 on:** February 26, 2016, 10:09:17 pm »

The rules are for Prilosec and other PPI the same time on an empty stomach only.

acid reducers at the same time and at exactly 12 hours after

Tunes and rolaids you have to take no closer than 4 hours before or 4 hours after Harvoni

BillT · « **Reply #26 on:** February 26, 2016, 10:18:03 pm »

I've gotten to the point that I always crosscheck what my doctor tells me,and what I Google with Lynn to make sure it's correct.

Thanks Lynn.lol

JackN · « **Reply #27 on:** February 26, 2016, 10:20:21 pm »

Love it

. The best group. Very supportive ~

BillT · « **Reply #28 on:** February 26, 2016, 10:41:19 pm »

Lynn is one of those women you would hate to be married to.You would never be able to use the words "you're wrong" in the same sentence.lol

Lynn K · « **Reply #29 on:** February 26, 2016, 10:42:59 pm »

Lol I guess I may have that rep sometimes

I thought I was wrong once but I was mistaken

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Author Topic: How to Stay NONDETECTED? (Read 16683 times)