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Unusual oral/genital herpes presentation?
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Unusual oral/genital herpes presentation?

I think I have contracted oral and genital HSV1, but I would love some more advice. My symptoms have been subtle and the clinicians I've seen do not think I should worry that it is herpes (especially genital). However, some things they've said suggest to me that they aren't up-to-date about how the infection can present itself. I would love more opinions, especially those of experts.

I should also mention that I have had tremendous anxiety from this over the past 9 weeks. I've had problems with this throughout my life, and these recent events amplified things greatly. I'll spare this board any more details, and I have been seeing mental health professionals regularly to work through this. But I want to mention this because clinicians attribute many symptoms listed below to extreme anxiety. Aside from this, all symptoms I note below were also felt while paying extraordinarily close attention to the areas of the body that can exhibit symptoms. Some suggest that this could lead to psychosomatic senesations.

I had a negative HSV1/2 IgG antibody test result at about 3 1/2 weeks -- about exactly when this test should have a 50% false negative rate (i.e., median seroconversion time is 25 days according to "Time Course of Seroconversion by HerpeSelect ELISA After Acquisition of Genital Herpes Simplex Virus Type 1 (HSV-1) or HSV-2", via Anna Wald's lab). Anyway, given the info below, I would really like advice about the following questions:
(a) Does herpes seem highly likely to you too? I will certainly test again at the 16 week point, but results from that are 2 months away and this is very often on my mind.
(b) If I test positive for HSV1 in 2 months but never feel any more symptoms genitally, should I go about life as if I had genital herpes? Or does it sound very unlikely that I have had any evidence of genital herpes?
(c) Should I wait longer before I am intimate with my girlfriend again? She has oral HSV1, but not genital. I am basically unsure if I am asymptomatic right now -- I think I am not, but the virus is being very weird if so.
(d) If I somehow test negative at the 16 week point, how much longer should I wait before testing yet again?

I give all this info for completeness, not because I expect repliers to read every word. Thank you so much for any ideas you can give. Also, if you're listening... I would especially love to hear from gracefromHHP !


_______________________________

Transmission:
When my girlfriend got her last oral cold sore, the virus would have been transmitted to me in either of two ways: (1) One or two days before the sore appeared, we had a romantic evening that included oral sex, (2) A day after her sore erupted, I foolishly shared my drink with her. She took a sip from the side of the glass, then I took a sip of liquid from a straw at the bottom of the glass (she had always heard that transmission requires skin-to-skin contact). Then I realized that this was a dumb idea, I put my drink down, and got very paranoid about contracting the virus from that point onward. Though I never developed a classical herpes lesion on my mouth, however autoinoculation (transferring the infection from mouth to genitals) still seems possible. This would have occurred by touching my slightly sore lips (by, e.g., resting my chin on my hand) then masturbating without washing my hands. I have no recollection of this specifically, but I did masturbate a few times without washing my hands in the first few days of oral symptoms described below.

Below, I describe the appearance of each symptom relative to the likely time of exposure.

Oral symptoms, and general symptoms:
* Diffuse tingling throughout my left cheek, sometimes reaching my jaw or near my lips. Seems like paresthesia throughout the trigeminal nerve (began week 1. I've felt this about half the days the past 9 weeks, including today, with varying severity.)
* Malaise, weakness (began week 2, lasted 4 days). Coincided with the onset of extreme worry.
* Some insomnia and night sweats, probably anxiety related (began week 2, lasted 4 days)
* Generally chapped and sore lips, maybe more so in both corners (week 2, lasted 5 days. May have coincided with dehydration)
* Excess salivation (began week 2, lasted 2 to 4 days)
* More soreness/sensitivity in the corner of my mouth (returned week 4, lasted off-and-on maybe 2 more weeks. Coincided somewhat with catching a cold (see below) )
* After 20 minutes after especially distinct prodrome-like tingling (almost twitching) I notice a reddening spot on my skin on the border between my lip, i.e. the vermilion border (week 7). This is the size and location of a typical cold sore, however, the reddening completely vanished in 1 to 2 hours. I took 400 mg of my friend's acyclovir just before the reddening vanished, though I don't think the medicine should be so quickly effective. I took 6 more regular dosages of this acyclovir over the next 2 days, then stopped since I felt mostly asymptomatic. Anyway, this was my most tell-tale herpes symptom, as unusual as its presentation was.
* My lip split unexpectedly and was sore for about 24 hours (week 9). This seems possibly like a typical "small cut" herpes presentation that many people ignore. It may have coincided with some lip dryness, though, and there was no prodrome or tingling. The area was generally red and this was near the location of the previously mentioned red spot.
* I never had a fever.
* I never felt itching or burning.
* I never had a classical lesion, i.e., "cold sore".
* I caught a cold from from frequenting doctors offices in week 3, and this lasted about 1.5 weeks. I'm fairly sure this wasn't HSV since symptoms involved sneezing & a sinus infection. I had a prominent sore throat and more chapped lips during this time.


Genital symptoms:
* Localized sensitivity on penis, specifically about 1 cm left of center on the corona of the glans (glands). I can't recall ever feeling anything like this before. It is very subtlety but distinctly more pink in this spot (sensitivity started about halfway into week 2, lasted 2 days. Sensitivity reappeared in week 3, lasted off-and-on for 2 to 4 more weeks. The pinkish "spot" though has never gone away and hasn't changed much even by now, 7 weeks later).
* Subtle soreness in buttocks, perhaps sharp pain in hamstrings (end of week 2, lasted 2 days. Also, this was after a few days of being essentially bedridden.)
* Stinging pain while urinating (beginning of week 4, lasted 4 days). The pain is located right at the tip of the urethra. For 1 day, urination even made the sore spot on the glans (glands) mentioned above hurt more, a sharp needle-like pain, perhaps since more blood flowed to the glans (glands).
* Sharp, needle-like pains generally around the glans (glands) of my penis (week 4, lasted a few hours). This woke me up in the middle of the night and I may have been sleeping on it in a bad way. It was gone by morning, and was not associated with any new visible symptom. This was the most genital pain I had felt throughout these weeks.
* No itching or burning
* No classical, blister-like lesion


Medical attention:
* I've seen 4 different clinicians about this, over perhaps about 6 different appointments. On the 6th I got a prescription for acyclovir, but the clinician was explicit that this was mainly for anxiety, not because she thought I had a herpes infection. I took this regularly during week 9.
* Regarding the sensitive spot on my penis, all clinicians say that they see nothing herpes-like about it. However, some of them have also said that primary oral herpes infections always involve a severe outbreak of cold sores, which any reliable source I've found on the internet would disagree with.
* I've been seeing good people for the anxiety from weeks 5 onward.
3 Comments Post a Comment
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101028_tn?1348750963
really no reason to think these are hsv1 symptoms.

really, put down the herpes reading material and go enjoy life :)

grace
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Avatar_m_tn
Thank you so much Grace :). I will try to keep a positive outlook, and most of life is indeed normal again. Though I will certainly get the blood test at the 16-week mark, I can't help but think oral/genital HSV1 is the most likely explanation.

Posts on this board have been helpful to me, and for anyone reading I just want to highlight some things I mention above. Mainly, that the two symptoms I felt were most clear were also a little atypical. That is (i) the unprecedented inflammation I got on the border of my lip after what I thought was a clear prodrome; however the redness vanished in a few hours instead of progressing, and (ii) the subtle but visible spot on my penis that was sometimes painful/sensitive; however that spot is still there, 9 weeks later, and it hasn't felt sensitive in a month.

Anyway, I think my test will be HSV1+ and I will be unsure whether to consider myself as "having" genital herpes. Perhaps I should report back then.
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101028_tn?1348750963
most adults will test + for hsv1.  you have no reason from what you've posted to think it would be genital at all.
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