How long to wait to retest after stopping suppressive therapy

[beatleslover85]

Hi. Here is my story.

Since childhood I have had a rather virulent case of HSV-1. As in, I got awful cold sores all the time as a kid and when I got older I would get one every month like clockwork, when my period started, or if I had been in the sun. Basically just really often. One period of time I was convinced I had AIDS or some immune compromising disease because i would get sore after sore. I later realized its because I was not allowing them to heal properly and was attacking them and my lips so vigorously that I was creating a more habitable place for the virus. My dad is a doctor and had given us kids Zovirax when we were growing up. As an adult I would take valtrex whenever i could get my hands on a prescription, either through my dad or a dermatologist. Sometimes I got lazy and let it slide and sure enough as soon as I was off the anti-virals a cold sore would pop up.

Fast forward to two years ago. About a month after having protected sex and receiving pretty vigorous oral sex (sorry for the graphicness) with someone i have known and slept with for years, I was shocked to feel two bumps under my skin on my labia. It didn’t present initally like my regular cold sores do, it felt like the bumps were fully formed beneath the skin, and i never felt a warning or tingling. they came to the surface in a few days and then it did act like a typical cold sore as far as the appearance and itchiness. It went away after about a week. I went to a doctor and had him look at it and he said if i didn’t think it was razor burn then it didn’t look like it could be anything else. Unfortunately I waited about 5 days after the bumps appeared to get them looked at so by then it wasn’t as clear cut and the swab test was negative.

I let two years go by without getting a blood test to see which type it was, basically because I didn’t see the point. I never had another breakout as far as actual bumps or sores, except for a month after the first time I felt one little sore on the tip of my labia. After that nothing resembling a bump or sore ever, but i feet itchy sometimes. I got back on the valtrex. Sometimes I let the RX run out and I have gotten a cold sore or two in the last two years. I also feel my oral hsv-1 a lot, the tingling and vibrating feeling. If i stop taking the valtrex i get a cold sore. I don’t feel that warning feeling down below ever, just itching.
So i finally decided I had to have sex again and went on the herpes dating website. After meeting someone I thought I could get down with I decided to take the blood test just to see on paper that I had hsv-2 before sleeping with someone i know has it. I figured if it was a low positive i would take the WB to affirm.

Results came back negative. under .9. I took the igg type specific test for hsv-2. didn’t bother taking an hsv-1 test since I know for sure I have it.

I was surprised to see the negative score, but then realized that the daily valtrex could have caused it.

How long should I discontinue the valtrex for before retesting. Like I said, i am pretty much guaranteed to get a cold sore if I don’t take it for a month, so i’m hoping two weeks would be enough time. What do you think? If I have to stop for a month and retake I will, and just pray I can nip a cold sore in the bud. As an actress/waitress, cold sores are really the bane of my existence.

[Terri Warren]

You are in a bit of a pickle here, for sure. Yes, the daily Valtrex can impact the antibody test. I would say that optimally, you would be off of it for 4 months before retesting. That’s probably too long for you, but as long as you take it, the mediicine, it will reduce the amount of virus present which will make it harder for the immune system to make antibody.Also, I think you should have a PCR swab test kit available to use at home as soon as you have any symptoms of an outbreak coming again. This might happen when you come off the Valtrex so if you do, be prepared to swab as soon as anything is visible.

Terri

[beatleslover85]

Wow, four months before I can get a reliable blood test??
I will get a pcr test but like I said, I haven’t had a sore or any tangible symptoms other than itching in two years, even whenn I do go off the valtrex. Also why do you think the valtrex doesn’t havent the same effect against the Hsv-1? I get cold sores and feel tingling as soon as I’m off it for a day.
If I get an Hsv1 and 2 test, and the antibodies show up for 1 but not 2, would that mean something?
Does there have to be a visible sore to do a swab test?

[Terri Warren]

In your situation, it would be best to have a symptom before swab testing, yes. You can recover virus from skin with no outbreak but the odds are higher.
In order to make antibody, the body needs more than a few days off therapy, unlike how long it takes to have an outbreak. Unfortunately there is no shortcut here.
No, if the test shows HSV 1 and not 2, you’ve had plenty of time off therapy to develop antibody to HSV 1 and that doesn’t go away, just no enough time to make antibody for HSV 2.

Terri

[beatleslover85]

Got it, thank you. I will wait a few months then and test again. I’ll try to make it to four.
i suppose I still should assume I have it and tell any partners that I may want to sleep with that it’s a possibility, even if it’s not visible enough in my blood to make antibodies? I know the whole seroconversion thing can take a couple months but is it just as transmittable now? since it’s been two years since the initial symptoms?

[beatleslover85]

Oh I forgot to ask if taking valtrex for one day IF I know a cold sore is coming will be allowed? Not every day anymore but just one pill one day if I know for sure a cold sore is coming.

[Terri Warren]

Yes, one day of therapy is not going to influence your testing.

Terri

[beatleslover85]

Hi Terri,

So I stopped the valtrex for 4 months and retested at labcorp, the results were negative again. Under .91

At first I was elated but now I’m just in a horrible state of uncertainty.

I know you recommended getting an at home swab kit. I looked over how much it would be to order from your clinic with the nurse consultation and getting a couple weeks worth and just didn’t have the money for it, esp with the two blood tests. I don’t have health insurance so I didn’t have a doctor I could ask. I feel stupid though I should have just gotten the kit.

During the four months there were I think three times I felt intense itchy burning that caused me to scratch a lot and redness. One time, with closer investigation in a mirror I did see a tiny bump about one millimeter, not in an area where there were hair follicles. Each time lasted from 48 to 72 hours.

There are a few slightly atypical things that I noticed in my situation that give me probably an unhealthy hope that I could trust the blood test. based on the dozens of answers I’ve read by you;

1.) the first outbreak came at least three weeks after my last sexual encounter. I recall it being a month but it may have been a bit less.

2.) I had had protected sex and oral sex, but had let him “put it in” in the bathtub for a few thrusts. Less than two minutes. But I had just shaved. He didn’t have any signs of anything and claims to have never experienced any. He’s a blonde who keeps his lawn mower so I could see everything clearly. After the bathtub thrusts we went to the bed and he put a condom on.

3.) The other thing that confused me even at the time was that the way I discovered the outbreak was from just carelessly touching myself and feeling two round soft bumps under my skin that were painless. That just seemed different than how a cold sore feels or how I have seen people describe herpes. When I get a cold sore I can first feel tingling and itching and then the bump comes later and grows. But this felt like two painless bumps in a row under the skin. The next day though is when it seemed more like herpes, it burned and itched and when I examine it in the mirror it seemed the bumps had become little blister clusters. They were small though and hard to see. To the doctor it looked like razor burn on day 5 but it absolutely wasn’t razor burn.
Some weeks after I felt one tiny sore on my labia that was there about 48-72 hours.

I just don’t know what to do. Stay off valtrex for longer and wait again for an episode of itchiness and do the swab? It’s just so depressing because it’s been so long and what if it’s a yeast infection that time, just keep ordering swab tests? and i met a guy and I really wish I didn’t have to tell him I may or may not have herpes. Also now I can’t stop thinking about it and just constantly feel like I’m having symptoms or shedding virus now, it feels like little tingles and itches all day and night in different spots and I never know if it’s yeast infections, which I have had many, or from shaving or what. I can’t stop obsessing and feeling stuff. I never felt any prodrome symptoms before, the way I do with cold sores, just itching.

Part of me thinks “I took two tests and they were negative and Im going to take valtrex for cold sores anyway and even if I did have it the odds of transmission are so low…” But then I start to think about passing it on to someone and how horrible that would be. I wish I hadn’t met this new guy. This sucks.

What do you think?

[Terri Warren]

I think you’ve exhausted your subscription, sorry about that. If you want to renew, I would be happy to answer these questions.

Terri

[beatleslover85]

Sorry about that. I didn’t realize it lets you post without paying so I thought I must have bought the other round already or something.

Would appreciate your thoughts.

Also one more thing that probably doesn’t matter, but I also tested at 3 months just because I figured it may already be positive and I could move on with my life, but since it was negative that time I retested again at 16 weeks.

[Terri Warren]

I think you can rely on this negative tests. Period. I don’t think you need to tell a partner that you have herpes, that’s just not appropriate or necessary. If you do more testing, it should not be swabbing but a western blot. 16 weeks is long enough to wait and if you can just let this go, I would suggest doing that.
You truly are obsessing. Everyone, if they focused enough, might have genital sensations that could be described as abnormal. Please try to set this aside.

Terri

[beatleslover85]

Thank you very much for your help.

[Terri Warren]

You’re welcome

Terri

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