[Bluebutterfly1]

1. I haven’t done pcr swab testing of skin lesions on my butt, waist areas because I already did pcr swab test on my labia ulcers a couple months ago. The pcr swab was on a fresh open sores on my labia and result came back neg for hsv DNA. I truly believe this was a false neg as I was taking Valtrex 500 mg every 12 hours for suppression at the time for my frequent intraoral obs. I don’t think another pcr swab is that helpful if the valcyclovir is going to be in my system as I may not believe a neg result anyway. Should I see a derm and get a biopsy?

Should I go for pcr testing again even if I’m on Valtrex? I am afraid to stop taking Valtrex. I have had 7 to 8 recurrent lesions in my boxer shorts area since March so I really don’t feel safe to get off valtrex and don’t think I can mentally handle any increase frequency/severity.

I know hsv1 is supposed to be quiet genitally but my case is very frequent. Is taking Valtrex 1 gm BID worth trying and safe? I am on 500 mg bid and still having frequent obs. Husband is frustrated and in denial and I am afraid to have sex even with no visible ob and condoms.

The red cluster of spots on my waist have gotten darker and some are lighter nd have changed to form together like a jagged line with other red spots around it. The red spots might be tiny blisters. The cluster or red dots on a red base that change color and size the next day seems to be hsv like, correct?

Does covering the area in tegaderm help prevent spread? I don’t remive it until is is fully healed.

I am also getting itching in the r labia area. No new sores down there when I checked with gloves but I worry that’s a sign I’m shedding? I will itch and think I’m getting an ob in that particular but an ob will show up in a different area that was not itchy instead. Have you seen this?

I get ob every time around start of my period. Should I increase the Val a week before? How much should I take before my period and for what length? How many days before period?

[Bluebutterfly1]

1 Sorry. I meant to say how can the Valtrex cause a false negative on the PCR swab test? I want to understand how antivirals may interfere with PCR swab testing better. I was taking Valtrex 500 mg BID for at least a solid week prior to getting the outbreak and had it swabbed within 24 hours of noticing any symptoms/redness. I have seen some studies show that PCR can still show positive even if people are taking valtrex (like when they test shedding rates of antivirals vs placebo). That is why i am confused how antivirals can cause a false negative.

2. Do you recommend i get off the valtrex to get a more accurate PCR swab test result?

3. I have had some rash on the skin of my buttcheek two sepearte times. It looked like 7 very small dots that appeared in somewhat of a linear distribution. They did not itch but first presented as redness and then later within a couple of days lightly scabbed. I did not see obvious vesicles, but maybe they were very flat and tiny vesicles. Does that sound like herpes on butt? It showed up 12 days after the genital lesion appeared. I have been taking valtrex 500 mg BID for supression so i am disappointed if this is another ob that happened so soon while on antiviral.

4. For females, what areas of my body can I shed asymptomatically? Is it just the vagina, anus, and vulvar region, or can I shed from other locations that I had an outbreak- like where i had those dots on my butt? Please let me know which areas of my body can shed virus?

5. Can covering those areas on my body by wearing bike shorts during sex help to decrease transmission since there is less skin-skin exposure?

6. What are areas on men can HSV penetrate/infect? I know penis is one, but what other areas are susceptible? In other words, what areas on men’s bodies should be covered to prevent transmission?

7 If this is HSV1- why am I getting it so often on AV suppress? what else can I do to treat? I am considering getting off label SADBE. What are your thoughts?

[Bluebutterfly1]

1 I understand the false negative rate is low but I think the clinical suspicion is high for HSV considering the presentation of ulcers and breaking of the skin on my labia minora. I believe the swab timing was good but PCR testing is not perfect. How many cases have you seen of valtrex causing a false neg PCR swab? How do antivirals interfere with PCR swab testing? is is possible that shedding of the sore is intermittent even though it is an open sore, and therefore there was no virus on the sore or is there always virus there when there is an open sore?

2 Why do you say valacyclovir unlikely would cause a false positive? I am trying to understand better.

3 So you are saying that you haven’t seen or heard of cases when someone got genital HSV earlier in life and it be dormant (asymptomatic) for 15 or 20 plus years and showed up later?

4 I do remember touching myself with my hand on my right labia (carelessly) without washing my hand a few months ago. Let’s say that there was HSV 1 virus on my hand (I was eating food shortly before touching the labia and had saliva on my hand) and I touched my labia using that hand/finger 5/10 minutes later, did I autoinfect? I didn’t start having genital sx until after this incident.

5 My husband is very concerned about HSV and requested we don’t kiss/oral sex. He does not want to take chances and am OK with it as I don’t want to give it to him. That is why it is VERY IMPORTANT I KNOW IF I HAVE GHSV OR NOT. It could end our sex life. Are there underwear condoms that would cover his entire pelvic area? what % does condoms reduce risk of transmission from w to men using condoms? What are the best things I can do to reduce my risk of infecting him with gHSV and what is that transmission risk decreased down to doing all those things? If we don’t know from data, what is your estimated guess? I am willing to do whatever I have to do.

6 if this is a new infection, should I hold off sex for a year or 2, and what is shedding rate?

[Bluebutterfly1]

4. If that is possible, then how likely would it be that I had HSV1 genitally and orally all these years (since age of 14 ) and never had a genital occurrence until now 20 years later? To me, if I had genital HSV-1 for 20 years and never had an OB, why all of a sudden now? Especially since I’m taking Valtrex (never took suppression antivirals until this year due to the frequent intraoral sores). I am very confused.

5. What should I do next to figure this out? So far the 1 genital HSV swab was negative while on valcyclovir supression. My biggest question and concern is do I have HSV genitally and it is consuming my thoughts. I am afraid to have sex with my husband as I don’t know what’s truly going on and his risk for transmission.

6. My husband and I have been together for about 15 years, married for about 11. Like I said, he and I don’t kiss and I don’t give him oral, or share food/drinks/utensils. I have been very particular about doing what I can to not infect him or my kids with HSV. He tested neg for HSV-1 on igG test and I would be willing to do a western blot test for him if I have genital HSV just to get more clear idea of our circumstance and risk but i am primarily focused on what I need to do next. IF i have another genital sore, I will plan to go and get it swabbed again, maybe I should get it biopsied if I had a negative PCR? I thought for a second I might have bequette’s given my intraoral sores and genital sores but that is super rare and my oral sores do not look like aphthous ulcers.

7. It is very frustrating because I think I need to assume i have genital HSV until I rule it out by more negative testing or finding out the sores are something else. I realize there are very few things that can cause ulcers/sores on labia so that is why I have to assume it is HSV. What is your opinion on everything I have described about my lesions, symptoms, and history…what would you assume and recommend I do at this point? I value your input greatly. TY!

[Bluebutterfly1]

1. The PCR swab of my genital lesions came back neg for HSV DNA. I noticed the sores/burning in the evening on my labia minora and the next day in the afternoon it was swabbed in less than 24 hours of me noticing any symptoms/redness. At the time of swab the sores were open, red, and raw and oozing fluid a hurting/burning. The provider swabbed all of the red sore/open cut areas and it did hurt during the swab procedure so I figured she scraped a good amount and got a decent sample. The result came back the next day. Do you think that this could be a false negative? What are the rates of false negatives on genital PCR swabs for HSV-1?

2. I had been taking valtrex 500 mg BID for at least a week or more prior to the PCR swab for treatment/prevention of the oral HSV-1. Is it possible that the valacyclovir made this result a false negative despite the sore being fresh (nonhealed)? I think the timing on the swab was good as my ulcer/sore became less painful and started improving after following day and was swabbed at it’s worst. It took about 4-5 days to heal. No crust or scabbing but it was itchy when it was healing.

3. Yes, I have had oral sex done to me at the age of 20 (I started having classic cold sores on my lip when I was 13 or 14 years old (probably got it from my mother who had cold sores) but didn’t have anyone do oral sex on me until I was 20 years old. I was focused on school and did not really kiss or have sex with anyone until 18 years old. So, my HSV-1 oral infection was definitely well established by the time I had any oral sex or sex in general. Is it possible I could have gotten gHSV1 from the oral sex in my early 20s and just never had an OB until now… 15 years later?

3. Do you think I could have infected myself as a teenager by autoinoculation (carelessly touched my cold sore and then my genitals) in the 4 month span after my primary HSV-1 oral outbreak? I was not careful and I didn’t understand anything about HSV at that young of an age…

[Bluebutterfly1]

6. If my body is not able to fight hsv and I keep getting frequwnt recurrences despite taking suppression what do you recommend I do next? Should I get immune testing done?
7. Is it pissible I have a crazy strain of hsv1 that is exceptionally hard to fight off?
8. Have you ever encountered a case like mine? If so, what happened to those patients over time, did their disease ever improve and how long did it take?

[Bluebutterfly1]

Hi Terri. I someone wasn’t able to log in using my old account so I created a new account to continue asking questions.

So I got another 2 swabs done of one of my intraoral sores (both on roof of my mouth on different sides) (same time 2 different sores in my mouth) and one came back neg for HSV DNA and the other one back positive.
1. Do you think that some of these sores could be something else and some of them are HSV? Could it be positive from asympt shedding?
2. Is it more likely that since one tested positive for HSV that they are all caused by the HSV? Why are the HSV sores persistent and recurrent almost weekly to biweekly since January? Isn’t that really rare? It is now my 6th month of this very frequent recurrence in my mouth.
3. Also weird thing is that I always used to get them in my lips and 1x a year so why all of a sudden since Jan they are only inside my mouth?

My husband recently had what looked like one tiny red sore on the side of the roof of his mouth. He said he didn’t feel any pain just felt a small bump and then the bump feeling went away in a day. Well now I’m freaking out that I gave him HSV orally. He and I don’t kiss in many years. We used to kiss in the beginning but we stopped. He tested negative for HSV1 and HSV2 back in 2012 (after we stopped kissing). I do not give him oral sex. We don’t share food or utensils. He accidentally drank one of my cups of coffee back a few months ago. This was during the time I have had very frequent outbreaks in my mouth. I might have had a sore as my mouth was itchy and I saw red sores about 3 days letter in my mouth. I am scared he got it from drinking my cup. He drank it maybe 10 minutes after I had drank it.
4. Do you think this drinking incident led to transmission of the virus?

5. Do you think while talking I accidentally spit into his food or spit (while talking sometimes spit may come out) and into or near his mouth, I may have spread the virus to him? He is getting igG test done tomorrow.

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