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Avatar universal

Devastated! Just diagnosed with HSV1...

I just got my confirmatory test results back.  It came back as positive for HSV1.  The first time they tested for it, it came back as equivocal so they sent it to the Mayo Clinic for confirmatory testing.  I'm feeling just devastated right now.  I just keep crying and crying about this.  I think and the NP that examined me after what was supposedly my primary outbreak thinks that I got this from my boyfriend performing oral sex on me.  He gets cold sores on his mouth on a fairly regular basis.  I never worried about that because I never let him perform oral on me when he had a visible cold sore.  We didn't realize that he could still transmit it to me genitally even when he didn't have a cold sore showing.  He recently also got tested for herpes and we're still waiting to get his results back.

If he comes back positive for type 1, it's safe to assume probably that he has it orally but how will we know if he also has it genitally or not?  Since we'd been having unprotected sex, what are the odds that he could have given me type 1 orally by performing oral on me and that I could have then given HIM type 1 genitally?  I'm just really stressed and concerned about how this is going to impact our sex life.  Does this mean that we'll never be able to have unprotected sex again to avoid having me transmit HSV1 to him genitally or if he does oral on me again do we have to worry that he could then have an outbreak in his mouth (even during a time where I wasn't having an outbreak)?  If someone could let me know, I'd really appreciate it.  I'd especially like to hear back from Grace as she seems very knowledgeable about all this.  Thanks...
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Avatar universal
i just have a question for grace because she seems to know a lot about herpes type 1

i was diagnosed with it today, from what i thought was an in grown hair on my inner thingh, i had un protected sex because all i thought it was, was a small in grown hair

i then got it checked the day after when it got worse and sure enough it was herpes type 1..do you think it is likely i spread this to my partner? thankyou heaps
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101028 tn?1419603004
You both are hsv1+.  he has a history of obvious cold sores so you know his is oral.  You have no idea exactly where yours is since you never had a lesion culture come back hsv1+ from your genital area.  I wouldn't bother taking any medication at all at this point. If you get a return of genital symptoms- go be seen and tested with a lesion culture and typing and avoid sex until everything is back to normal.  It's totally up to you if you feel the need to use condoms or not.  If you do really have it genitally - on average it sheds 3% of days. The chances of you having sex on one of those days is rather small to begin with. Also your bf's oral hsv1 infection makes it very unlikely that he'd contract it genitally later on.  This really isn't an issue for the 2 of you unless you let it become on.

grace

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Avatar universal
Hi Grace!  I know you mentioned before that my bf having HSV 1 orally gives him significant protection from getting it genitally.  Can you please point me in the right direction of where I might be able to find actual statistics regarding this?  My bf is going to ask his doctor about all this at his follow up visit with him, but we would like to find all in the info we can online too since his doctor probably is not an expert about all this....Since we are in an exclusive, loving relationship, it would be nice to be able to go back to having sex without condoms, but first we want to find out more info about how high his risk of getting it genitally would be.  If we do decide to back to not using condoms together, would you recommend that I start taking daily supressive therapy such as Valtrex to avoid transmitting it genitally to him?
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Avatar universal
Thanks for your input Grace.
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101028 tn?1419603004
He has a history of recurrent cold sores so obviously it can't be a newly acquired infection for him!! If you can get the results of his test I can better help you with his results - ie hsv1 igg 1.7 and hsv2 igg .34 or whatever they are.

Darn shame providers know so little about the herpes blood tests that they don't listen to the "whole" story from people to even begin to know what to tell them...sigh.

grace
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Avatar universal
Thanks so much for your input everyone.  I really appreciate it!!

Grace, I have an  update for you.  My BF got his STD test results back yesterday.  He was positive for HSV1 and negative for everything else.  They told him that his HSV1 looks like a new infection because I guses there was a low amount of antibodies that showed up on his test.  So, now we're both kind of confused about this.  He and I were both told that it looks like we recently acquired HSV1.  We're assuming he has it orally and me genitally.  How can this be though that we both got HSV1 recently?  This kind of confused us and threw us for a loop since we both thought it seemed pretty plausible that with his history of cold sores that he had had HSV1 orally for awhile and then passed it on to me.  Any input you have on this would be much appreciated.  Thanks!
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Avatar universal
I'm in the same boat here.  I had a HerpeSelect test done in 2001 and HSV-1 was positive and HSV-2 negative.  Never had an outbreak in either place.  Had another blood test done in Dec. 07 and the HSV-1 was equivocal and HSV-2 negative, but now have what looks to be herpes outbreaks.  My culture was negative.  My OB seems reluctant to tell me it's anything else, but there is no clincal evidence.  I know that my OB is going based off of education and experience, but seems to have stopped on herpes because that's what it looks like.  Definately get a culture within 24-48 hours of an outbreak.  Be persitant about this until you get a REAL answer even if it's not the one you want.
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Avatar universal
Thanks for letting me know Grace.
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101028 tn?1419603004
Visual diagnosis of genital herpes is often wrong - one study estimates it's wrong 1/3 of the time.  That's why having a lesion culture and typing done on all visual suspected herpes infections is the best course of action.  Unfortunately if this is hsv1 genitally - ob's will hopefully be few and far between but it will mean getting actual confirmation of hsv1 genitally by getting a lesion cultured and typed won't be easy.

grace
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Avatar universal
Why do you say that you would't assume I have hsv1 genitally yet at this point based just on the blood test results?  Aren't the blood tests pretty accurate?  Are you thinking that maybe I really only have it orally?  If that's the case though, wouldn't it have come back as positive right away, the first time I was tested rather than equivocal which I've heard can indicate a new infection?  I'm not sure what type of blood test I had done, but I asked the lab that when I called to get my results and the person I spoke to didn't know what type of test had been used.  I've recently had two hsv1 and hsv2 blood tests.  The first set of tests came back equivocal for hsv1 and negative for hsv2.  Family Planning told me they wanted to get a clearer result for type 1 so they sent it off to the Mayo Clinic for confirmatory testing.  My bf was recently tested, and we're still waiting to hear back about his results.
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101028 tn?1419603004
It's unfortunate that you only had a visual exam that said herpes. I wouldn't even assume you have hsv1 genitally yet at this point based just on the blood test results. Do you know what sort of blood test you had done? Had you ever had one done before?

Your bf needs to get himself tested to see what his status is.

grace
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Avatar universal
Also, do you recommend that if we do find out he's somehow negative for type 1 that I go on daily Valtrex or some other supressive therapy as a way to further reduce the risk of him also getting type 1 genitally or is Valtrex meant more for Type 2?  
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Avatar universal
Hi Grace.  Thanks so much for your helpful advice.  I really appreciate it!  They actually didn't do a lesion culture on me.  The NP just examined me and said she thought it looked suspicious for herpes and then handed me a booklet about it and condoms.  I felt a little upset that she just automatically assumed I had it, but turns out that  unfortunately she was right.  I did at the time tell her that I wanted a blood test to be sure, and like I said the confirmatory test from the Mayo Clinic turned out to be positive.  

Now, I'm assuming that when my boyfriend gets his test results back, that he will also be positive for type 1.  If for some weird reason though his result comes back negative, what will that mean in terms of us having oral sex?  If I perform oral sex on him, does he have to worry that he could then end up getting type 1 genitally through my saliva being infected with the virus?  Would it be safe for him to perform oral sex on me (assuming I wasn't having an outbreak or just getting over one)?  What about him touching me?   Would it be safe for him to touch my vagina and then touch his penis directly afterwards or could he then get type 1 in his genitals from getting my vaginal fluids on his penis?

I will be pretty surprised if he comes back negative for type 1 as I see no other way I could have gotten it.  However, I think it would make both him and myself feel better if we know what to expect if his test was to come back negative....
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101028 tn?1419603004
Your bf has a history of hsv1 orally - aka cold sores. You have been diagnosed thru I assume a lesion culture with hsv1 genitally.  No reason to assume that it came from anything other than him performing oral sex on you. Hsv1 orally sheds on average about 18% of days so that means that on average the virus is active about 18 out of every 100 days in him.  So if he get a cold sore for 10 days during that time - that would account for 10 days of shedding which means the other 8 occured periodically in between the obvious cold sore. Does that make sense?  I'd assume that he performed oral sex on you on a day that he was actively shedding the virus without any obvious symptoms and conditions were just right for you to contract the virus. It's the far more likely scenerio than he also has hsv1 genitally and gave it to you thru regular sex.

So what does this mean for the two of you?  It just means if you have any genital symptoms - avoid sex until they are gone. Your bf has significant protection against contracting hsv1 genitally from you. His own hsv1 oral infection helps with that. As long as you are with this bf - not really anything to worry about. In general hsv1 genitally doesn't reoccur very often so it shouldn't even interfere with your sex life very much once this initial ob clears up :)

Should you and your man ever end your relationship - stop back in for a refresher course on hsv1 genitally and what it means when dating. Since you don't anticipate ending this relationship anytime soon - you'd only forget anything else we told you anyways by then!!!

Let us know how else we can help you.  Lots of good people here on this forum even if all you need is a virtual shoulder to lean on every now and then :)

grace
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Avatar universal
Thanks for the info wizix.  I really appreciate it.

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Avatar universal
i m not as knowledgeable as grace but here piece of info.
Its not that u would never be able perform or get oral from someone.
HSV1 and HSV2 do have different intensities in people so u it could be less intensive in u and could cause less OBs. Also the OBs and shedding can be controlled by anti virals and most importantly by every OB our body developes better capability to handle OBs and over a period of time the OBs gets less and less in number. So its not that u would never be able to do stuff sexually. But u will have to really careful whenever u have an OB. Helps?
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