Reply To: Oral HSV-2 from Casual Contact

[Daisyann]

Dear Terri,

I wrote to you before. I want to recap my situation to gain you’re opinion. I then have a new question for you.

Here is my timeline:

1. On the first day of school (and the next couple of weeks afterwards,) I was working with a special needs child who had what looked like oral herpes sores. He kept rubbing them and flailing his hand/arms at me. I am 100 % sure that liquid from his sores was spread on me. I tried to wash really well in hopes that I wouldn’t get anything. I truly believe I did wash well. But 12 days after school started, I got my first oral sores on my tongue. I had the swollen glands, sore throat, mouth sores (that looked more like cuts than blisters,) and sores on my lips.

2. I went to the doctor’s and got a culture and ELISA blood tests. Everything was negative.

3. I continued to get about 1 new sore on my lip per day. I wouldn’t feel anything before they appeared. But I’d feel a strong itchy/burning tingle. I’d then go to the mirror and see another sore had recently appeared. They were small and would go away in a day after applying Abreva. My doctor and also my husband (a physician) thought they looked unlike any oral herpes they had seen before. BTW, I still get about one new sore on my lips every single day. However, about at the four month mark, I stopped applying Abreva because they would disappear on their own within a few hours of appearing. Although I’ve gotten hundreds of sores since September, none have been noticeable to anyone but myself and people I’ve made look closer. They wouldn’t be noticeable to someone I was having a casual conversation with. They’ve never looked like any pictures of herpes that I’ve seen. And I have looked online for hours for pictures. But they do reoccur for the most part in places where I’ve had previous sores. And they do burn and tingle. So I do think it’s herpes.

4. For the first four months, I would get many cuts in my mouth whenever I would get a cold. I seemed to get so much sicker than I would before I got oral herpes. These cuts would last a few days and then disappear until the next cold. They would appear at the same spots inside my mouth. However, around the four-month mark, they stopped coming, even when I would get a cold.

5. At the nine-week mark I retested with the ELISA and got negative hsv-1 but a POSITIVE 2.52 hsv-2 results. I was shocked! I’ve reviewed my life those first two weeks of school and I was only ever 3 locations outside my house: at my job as a teacher, dropping my younger kids off at daycare, and also at my elementary-school-aged child’s soccer practice. I’ve concluded that the boy with the sores was my only exposure. (There is zero chance my husband or I brought this into the marriage and also no chance that he cheated. He also tested around this time and got a positive for hsv-1 (despite never having a sore), but a negative for hsv-2.

6. I tried to get a Western Blot, but my doctor’s office actually ordered another ELISA. This time the hsv-1 and hsv-2 were BOTH negative. I have no idea what made it negative.

7. At the 16 week mark, I got a western blot. (Thanks for your help with that!) I again got a negative for hsv-1 and hsv-2. I had taken a few anti-virals in the first couple of weeks only. But I stopped because they made me dizzy. At the time of the test, I had gone 12 weeks without meds.

8. I got a negative pcr swab last week of a sore that had a small amount of liquid in it.

So here I am….getting a bit frustrated! I do think this must be hsv-2, as frankly, this is presenting unlike any hsv-1 I’ve ever heard of. Part of me wonders if this is something else other than oral herpes. But no one can think of something else it would be.

Questions:
A. Can you think of anything else this could be?

B. I’m going to keep trying the pcr swabs for now. How many sores is reasonable to swab and receive a negative result for before stopping altogether? (Answer under the assumption that money isn’t an issue.)

C. Have you ever had someone get a negative ELISA for hsv-1 and a positive ELISA for hsv-2, but find out later that they never had hsv-2 at all and that the sores were in fact, hsv-1? (I just keep hoping for hsv-1 because my husband already has hsv-1 (according to his blood test-he’s never had a sore) and if I gave it to someone else such as my kids or the kids at school, I think it would be less life changing for them.)

D. Why isn’t my husband breaking out? We’ve been kissing again now for 8 weeks. We’ve even kissed when I had these cut things in my mouth and on my tongue. (Oh, I forgot to say that I have 2 spots on my tongue that look normal but randomly burn acutely for a few seconds. This happens most days.) We’ve definitely kissed with the kind of kisses that should have transferred the virus. I don’t get it…. I had mere casual contact and got this thing… but he’s had significant contact with the virus, and get’s nothing!

He suggests that maybe I really have hsv-1 after all and that is why he doesn’t get anything. I hope this is true… but still suspect hsv-2.