confused about my status, symptoms and how I should "act" now

[Anonymous]

Hello, Terri helped me a while back to translate testing and we were able to rule out that I have GSHV-2. However, I’m still confused as to whether I have or could have ghsv-1. Here are the facts: I’m a 42 year old man. I have had oral hsv1 pretty much all my life and get cold sores maybe once or twice a year, if that. 18 months ago I woke up with a rash that over the course of the day got worse. This was about 16 days after oral/genital sex with a prostitute (both were “protected). I went to a clinic, and the PA said that it looked like a herpes sore. He took a swab test but said it couldn’t be definitive because it wasn’t much of a blister, so we might not have a good enough sample, and it could come back false negative. He put me on meds (famciclovir I think) at that time for 10 days. Went to my primary physician a day or so later who also said it could be hsv, but he said it looked different than other times he’d seen it because it was on two different areas of my penis (basically the upper and under side of the middle of my shaft), but to not get my hopes up. The swab test came back negative. The initial symptoms came and went fairly quickly, never really blistered over like typical symptoms are described. A few days after it cleared up, it started again, this time covered more of my penis, but never blistered, more like a sunburn that peeled a little. It also lasted longer, maybe 3 weeks. Ever since the start of the second symptoms, I have had a burning, sometimes itchy sensation on my upper/inner thigh and crease between thigh and scrotum. Thought it might be Neuralgia. Feels kind of like a sunburn. Never anything visually, although once the crease got a little chaffed looking and my Doctor prescribed a anti-fungal cream and it did go away. I haven’t had any other “herpes-like” symptoms since the initial back to back symptoms. I tried a 3x daily Valtrex for a month to see if it would do anything for the burning sensation, and it didn’t make a difference. My Dr. doesn’t think it’s related to the herpes symptoms, but the timing seems strange to me. I had several hsv2 igG tests, and they all came back negative, the last of which was taken a full year after the first symptoms and 3 months after I went off any meds, thus we ruled out ghsv2. I did get tested multiple times for every other std as well, all negative results.

Sooo, I’m really confused and frustrated because it seems like there is no way I can rule it out, and I’m not sure if I should feel compelled to disclose to future partners. The argument for me having it is pretty simple: I had a rash that did look herpes like after protected sexual contact with a higher risk person. I’ve also read that the back to back outbreaks is common for first time symptoms.

The argument against is: I haven’t had an outbreak since (although it seems that isn’t uncommon for ghsv1). The only meaningful test came back negative (they tested me for hsv1 igg, but that is no help, given I’ve had it since childhood). The initial symptoms did initially look herpes like, but never blistered over (maybe because of the meds?). I’ve read that having hsv1 orally can help provide some immunity for ghsv2, and I’ve seen blog posts saying that there are no known cases of someone who had oral hasv1 acquiring genital hsv1.

Sorry, I’ll get to my questions. 1. Is it true that it is impossible or nearly impossible to acquire ghsv1 after having oral hsv1 since childhood? Especially from a very brief protected sexual encounter (i really wasn’t into it and stopped pretty quickly). 2. If it is possible, any thoughts on what you think my status is and/or anything else i should consider as the problem if not herpes? 3. Any ideas on what the likelihood of me transmitting it to someone else and whether I should feel like I need potential partners? I dated someone for about a year who I told, and we had protected sex (and unprotected a couple of times) without issue. I had protected sex several times with someone I didn’t tell, and no issues there. I’ve also received oral sex from several women without issue (I know them but don’t know if they are oral hsv1 positive other than the woman I dated, who was). I really worry about giving it to someone! However, it also seems somewhat overkill to tell someone I MAY have ghsv1 and potentially kill a relationship out of worry that may be totally unwarranted. I guess part of this feeling is based on the notion that it is highly unlikely that I acquired it given my hsv1 oral status, and that it seems that I would have a low probability of passing it on even if I did have it (especially to someone else with oral hsv1). All this for a “disease” (ghsv1) that typically causes very little outbreaks, maybe one or two in the first year and never again (just to seems such a minor inconvenience in the grand scheme of things if it wasn’t for the social stigma)?? I never felt the need to disclose that I had oral hsv1 when i gave oral sex to women and that seems to be a higher risk of passing it along than ghsv1 (because there is more shedding for oral hsv1).

Ugh. Any thoughts on all of this? Probabilities of having it? Probability of passing it along if I do (assuming unprotected sex)? Am I right that there isn’t any other testing I can do? I know I’ll ultimately have to make those decisions on my own, but hoping having an expert opinion on the clinical side helps clarify fact from fiction, etc.
Sorry for the long post, and thanks very much in advance.

[Terri Warren]

My honest opinion here is that you have nothing to worry about. I have, once in 32 years, seen one person who may or may not have acquired HSV 1 genitally after having HSV 1 orally. They did test positive for HSV 1 genitally by PCR but reported having had cold sores in the past. They were HSV 1 positive by antibody test, so there was no way to sort out whether this was truly new or old infection. So MAYBE once in 32 years. Generally speaking, the antibody that you acquire from an infection in one place protects you from getting it in a new location.

So tell me about the sexual encounter – you said it was brief and protected. Was the oral sex given to you given while you were using a condom also?

I think there are so many things that should reassure you.
1) the negative swab test at the time of your symptoms
2) the fact that you are already infected with HSV 1
3) the symptoms that you describe to me sound nothing like herpes to me.
4) fungal medicine made it go away
5) it has never returned (though that is not inconsistent with HSV 1)

Yes, you would be far more likely to infect someone by giving them oral sex than through the remote chance that you could have genital herpes type 1. I think there is absolutely no reason you should tell people you think you have HSV 1 genitally. But as you know there is some risk of you infecting someone with HSV 1 from your oral infection, so I think you should give some thought to disclosing this fact

Terri

[Anonymous]

Thank you Terri! As you can probably tell, this has weighed on me heavily for a year and a half. To answer your question, the oral sex was done with a condom as well. She did put the condom on with her mouth, so it’s possible that there was contact without condom briefly, but that was it. Thank you for your honest advice. So hard to get a real honest opinion even from doctors. It didn’t occur to my Doctor that it would be extemely unlikely to get ghsv1 after having oral hsv1 for so long. Although, I did see a Neurologist and an Infectious Disease Doctor over that time to try and figure out this thigh burning sensation, and they both seemed very skeptical that I had herpes at all. The thigh sensations still bother me, and probably a big part of the reason why it’s been so hard for me to let it go, because it started at the same time as the initial symptoms. And I will say that the very first symptoms, I thought, did look very Herpes like initially. I looked at it and was like “whaaaat” that looks like a cold sore, but again, it never fully blistered over after that (which I thought maybe was because the meds stopped the full progression). Certainly nothing else has been typical herpes like. However, I think it’s time for me to let it go (nervously), and your opinion is GREATLY helpful. It allows me to move on a little with how I deal with sex and relationships, and I can focus on other possible medical reasons for why I’m having these thigh/crease sensations. I thank you again, very much so. It saddens/perplexes me that there aren’t more experts on the subject given the prevalance of the disease and the emotional pains it puts so many people through. You are providing a great service here. Please let me know if there is anything else I should think about related to this, otherwise I wish you the best and continued gratitude for what you do here for so many :).

[Terri Warren]

You are most welcome. I think if you can believe finally that this is not genital herpes then you will begin to worry less about the thigh sensations. I think you’ve thought of all the things you need to think about – AND MORE!
Best,
Terri

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