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TinDrum

Confused about all this testing

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TinDrum

Hey all:

I'm pretty sure at this point that I've tested positive with HSV-2. I recently went to my GP for a full STD panel and everything came back negative except for HSV-2.

It was an odd phone call, as my GP casually mentioned it, asked me if I had symptoms (never and I'm very, very neurotic about this sort of thing, have always asked the OB-GYN about anything that looked even the slightest bit funny, which is often since I get the occasional ingrown hair). He left me with, ust be vigilant and schedule an appointment if you notice anything out of the ordinary.

After taking a moment to process that he was telling me I had tested positive for genital herpes (which, while not the end of the world, is also not the smallest deal in the world) I called back, at which point he mentioned that on the Herpeselect test I had received a "low positive" (1.5).

My last sexual encounter was one lone encounter ( an unprotected rekindling of a former long term romance) 13 weeks ago and before that protected (several interludes) 6 months ago. The unprotected encounter is with an ex who recently also received his full panel and came out clean, to the best of my knowledge. Our conversation regarding the mattter was brief. ("HIV negative, clear of all other STD's save for HPV which I don't think they test dudes for"). I'm not positive, as we've fallen out, but I'm pretty sure he sees the same doctor I do, thus presumed inclusion of the HSV testing in his screening.

In any case, I've had one unprotected encounter with a man who has likely (but not assuredly) screened negative. Any other encounters are 6 months out and protected.

I'm negative for HSV-1, Positive for HSV-2 (igg 1.5) and my doctor doesn't even seem to think I should be tested again (although we agreed I would in a month). In the interest of not losing my mind during that month I would like to better understand the situation --

How often do false positives occur with the Herpeselect in HSV-1 negative people?

Is this something I could have had for years with a low negative titre?

If I was in act definitely infected 13 weeks ago, would I still have such a low reading?

Is the titre affected by how long the infection has been present?

Is my doctor's confidence misplaced?

As for now I am proceeding as though infected. Despite the hopes of those online, it seems that it is likely I have Genital Herpes. Until tested, I don't have plans to be active sexually active and when I am, I plan to use disclosure, condoms and antiviral medication to make sure there is awareness and prevent transmission.

Thanks in advance for your thoughts.

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    • Jayne
      I know this thread is a couple of years old, but it’s been helpful to me, and I wanted to contribute as well. Back to Berliner’s original post, I’ve tested negative on several IGGs, with the latest ones being 1 yr and now almost 2 years past exposure.  Figuring out what was going on was the worst nightmare I’ve ever been through in my life. I made the mistake of drinking heavily a week after my father died of cancer, and I had unprotected AS with an ex, who happened to be poly and had some occasional unprotected M2M encounters.   Three days later I had a red line rash along my (sorry to get explicit) crack. This was followed by a rectal burning. Tested negative for G&C and related tests.  Over the next couple of weeks I had severe swelling and discomfort in my lower right quadrant and was told to go to the ER, where (I guess as a standard practice) they did a cat scan, which revealed nothing.  Also not a bacterial infection.  However the repeated manual examinations that occurred at urgent care and the ER seemed to relieve the abdominal pressure over the next few days.  I then had diarrhea for the next several weeks after.  I developed what felt like internal hemorrhoids, which were exacerbated by the diarrhea, and a gastro doctor confirmed via digital exam that there was indeed some sort of mass that felt like possible hemorrhoids. He ordered a sigmoidoscopy, but by the time it was undertaken, whatever was there was gone. After the procedure though, I felt much better for a while, possibly due to digestive issues clearing up after the colon “cleanse.” But this was concurrent with other issues.   About 3 weeks after the encounter I developed a large rash on my left thigh. Shortly thereafter I started having light sensitivity issues, culminating in a fever-like state after being outside in the sun only for 15 minutes after work. At work around that time for a couple days I felt like I was going through life encased in a gauzy gel- similar to being on laughing gas at the dentist, but not in a good way. I didn’t know what the hell was happening to me. I developed a severe case of canker sores for about a day. Later during a sunny drive, after getting back in the car at a gas station I noticed a red blotch below my lip. I tried to shrug it off but it happened again on the trip back.  So by about a month after the encounter I was having more anxiety. I spent the night at a friend’s house and woke up with a massive, swollen red eye and swollen lips. I got eye drops for bacterial conjunctivitis but that was wishful thinking.  A couple of weeks later, my lips were covered in sores. I smothered them with abreva. By the next day, they had mostly gone away. I tried to do a swab test at urgent care (I believe it was the next day), but there was not enough there to make any sort of positive diagnosis. Since then, I’ve had what you could call repeated aborted lesions and red blotches that appear around my mouth, particularly after stress and alcohol consumption. But even having peanut butter or chocolate would set it off for a long time. Fair skin doesn’t help- there was no hiding it. Two months after the encounter, I had my first vaginal burning- it was pretty intense and I had to use ice cubes because I didn’t know what else to do.   The worse feeling though was the periodic flare-ups of rectal itching/burning, often accompanied by another red line rash. It made sitting uncomfortable for about the next two months. I couldn’t wear pants at work- only skirts seemed to make things somewhat less irritated. And for the first three months, I was still testing for HIV along with HSV because of the overlapping symptoms (rash, diarrhea, neural pain, severe flu like symptoms without fever). I lost a lot of weight and had panic attacks. On top of all this I had just moved to a new city and started a new job and didn’t have a support network. And the sad thing is, I had to deal with all of this instead of being able to grieve for my father and being a better source of support to my mother. She had to support me without understanding what was happening.   Another bad thing through all of this was having both my ex and my current partner treat me like I’m crazy. That makes me feel alone and in the dark. Another “hysterical woman.” F*** that.  And while I felt grateful that my current was at the time still ready to be with me even if I had hsv, it’s a little discomfiting that he still doesn’t really believe me. But I’ve learned to live with ambiguity. And now I’m used to doctors as well as partners acting like this is nonexistent. Especially with negative IGG tests even 2 years later, which have left me without any answers.  I’m lucky in a way to be able to blend in because I don’t get obvious sores, genitally or orally (I can cover up the blotches with concealer, and they fortunately have lessened in frequency). But I still get the rectal itching/burning every six months or so (anthistamines seem to alleviate it a bit). And as more of a concern, I’ve had a cramp in my lower right quadrant ever since, which feels like it’s in my digestive tract. Since this has pretty much spread everywhere else in my body, intestinal involvement wouldn’t surprise me, and it isn’t unheard of anyways. I’ve tried to move past this and have since gotten married to my partner, who is a source of support (even if he doesn’t believe I’m having health problems. I know that’s a contradiction but occasionally I want to believe that too.).  I’m also newly pregnant, and symptoms have started to flare up again somewhat. I’m sure this will be an adventure. Hopefully more good than crazy. I know I’m going to struggle with the fear of passing this along but I’m trying to reconcile what doctors say (which is that it is extremely rare) with my own intuition about what I need to be careful of. Maybe I’ll repost with an update down the road. In short, there are people out there who test negative and have to live with loved ones and doctors thinking that a negative test closes the book on this. Again, learning to live with ambiguity is a real life lesson that I’m still coming to grips with. This forum and specifically this post have been a source of comfort that I haven’t been able to find elsewhere. Thanks everyone for the support for the community.     
    • Rockster
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