December 14, 2020 at 7:07 pm #72060anne_onymousParticipant
I am 34F with increasingly frequent, painful symptoms I suspect are oral/genital HSV-1 but have negative IgG and swab tests. My husband is my only sexual partner (ever).
4 years ago I had a flu-like illness, after which I had throbbing pain in my clitoris and eventually saw a tiny tear. I was too late to have it swabbed but got IgG blood tests for HSV 1&2 12 weeks apart, all were negative. Right after that I started having recurring bouts of pain in my mouth on the gums, roof and tongue like I was going to break out in canker sores; there wasn’t much to see but occasionally tiny sores/cankers that healed in a couple days. (Now the mouth pain recurs so frequently I only get a couple days before it starts again.)
Months later I began to get recurring bouts of vulvar pain that felt like papercuts; very rarely I would see very small abrasions/cuts/tears (though the skin down there is fragile/irritated so looking may actually cause some small tears). Sometimes I get a crawling sensation, generally after the pain starts. 2 years ago it spread to include my anus; a nurse saw irritation/fissures and did a herpes swab that was negative. The recurring vulvar/anal pain has gotten worse and more frequent (at least monthly) over time to the point where I don’t get a chance to recover before it starts again.
1 year ago I got my fist external lip blister; one so tiny I didn’t have it swabbed. Now I get very tiny individual or small clusters of blisters every 4-8 weeks. This fall I got a textbook cold sore – a cluster of tiny blisters that wept yellow fluid for days (no prodrome). My doctor agreed it looked herpetic but viral culture and PCR both came back negative.
At this point I’m desperate for relief and don’t know what to do as my symptoms are getting very painful and frequent with more lesions. My doctor doesn’t think it’s herpes because of all the negative tests and sexual history, but has no alternative or treatment and will not prescribe antivirals.
December 14, 2020 at 7:10 pm #72061anne_onymousParticipant
Sorry I just realized I ran out of space and cut off my own questions! 🙂
I have 2 main questions:
-I’ve read that the IgG blood test for HSV-1 is only 70% accurate. When a person gets a false negative, is it random, or something about that person? In other words, if someone did have HSV-1 and tested negative, would you expect that all repeats of that test for that person would also come back negative? I’ve had 3 negative blood tests, but don’t know if the repeats are significant.
-I would really like to get a Western Blot, but I live in Boston and the nearest AnyLabTestNow is an airplane trip away (which doesn’t feel safe right now). Assuming my doctor will not order a blood draw, is there any other way to get the test done?
December 22, 2020 at 3:16 pm #72104Terri WarrenKeymaster
False negatives are a function of the tests. And I see many people for whom the IgG repeatedly misses an HSV 1 infection but the western blot picks it up.
I know of a lab in Springfield, MA that will draw your blood if you want to do this. If your doctor won’t order the test for you, I can order it for you. To do this, we would need to have a video conference – not legal to order a test for someone who is not your patient. You just need to click on the purple box to do that.
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