Oral HSV-2 from Casual Contact

[Daisyann]

Terri,

I am a female teacher who in late August contracted Oral HSV-2 from a special-needs preschooler through casual contact. I know that you are going to be skeptical, but it really happened. This child has had about 10 or more cold sores at all times on his lips, nose, and lower face since school began. (The school would not send him home for these cold sores, but after what happened to me, they are reviewing their cold sore policy.) He scratched continually at these sores. When I would try to coax him to the sink to wash because he touched his sores, he would get upset, (as he has troubling comprehending,) and would flail his arms, smearing the virus on me. I tried so hard to wash my own hands frequently, but I guess I must have made a mistake. I probably had the virus on my hand and wiped a hair away from my face or something.

I did speak to his parents about the sores, asking them what the doctor has said. They replied something about how is eczema makes it worse and that he has more when he has a cold. (This kid always has a cold and always has many sores and I do expect his has a poor immune system.)

Twelve days after school began, I got a burning spot on my tongue that looked like an inflamed taste bud. (It really, really burned though, so I knew something was wrong.) Then a few days later, I the sores on my lips began. I also felt awful with a sore throat, swollen glands, fever, malaise, sores in my mouth, more burning spots on my tongue, and even sores on my throat and tonsils.

I went to the doctor and got an ELISA and a culture. The culture came up negative, but my doctor said that more cultures come up negative than positive, even when someone does have herpes, as the virus is fragile. My HSV-1 and HSV-2 were both negative (below .9).

I continued to get cold sore after cold sore, probably 80 in all for the next 9 weeks. (This really surprised me, as I’ve always had a really great immune system.) After 9 weeks, which is right now, they are finally slowing down. (However, by this point I have tried 3 different anti-virals, high doses of l-lysine and immune boosters, tubes and tubes of Abreva, and also avoided what the internet told me were trigger foods.) I went back to the doctor several times during theses 9 weeks to try different antivirals and such. Each time I was told that the sores didn’t look like definite herpes, as they never got large They were small and red with a small white head. I’d put Abreva on 5 times a day, and although I got a new one or two every single day, each one would disappear in a day or so. They never got large and oozing. Also, the sores in my mouth/tonsils/tongue returned twice when I got colds during this time. My doctor kept saying he wasn’t sure it was herpes, which I felt given my obvious primary outbreak and how Abreva was helping the sores, was odd to say to me. I felt that this WAS obviously herpes. (There was one sore that I didn’t treat right away and got aggressively larger really fast. When I finally treated it, it got better rapidly. This proved to me that the Abreva was helping.)

My doctor still wasn’t sure it was herpes and ordered another blood test just recently. My results for HSV-1 were still below .9. But my results for HSV-2 were 2.52! I was shocked and devastated! I hated the stigma. I hated that I could infect my family and children at school with a virus that they shouldn’t have to deal with. (When I thought this was HSV-1, I didn’t feel as bad, as if I did accidentally give it to someone, then I could console myself with the fact that most people get it anyway. I was just give it to them sooner versus later.)

Just so you know, I do not suspect sexual abuse. The parents of this child have many cold sores also. (This is a low-income family who may not be seeking the proper treatment that others would seek in their situation.) The mother of this child is pregnant again and told me she will have a c-section for “medical reasons,” so I suspect she may have genital HSV-2 and passed it to the preschooler during his birth. Or maybe she had it orally also and gave it to him through kissing. I did tell my school what happened to me, but they do not want to confront the family. The are however, looking into altering the school’s health policy so that wounds need to be covered up and that if they can’t (like a cold sore,) a child may only attend school with a doctor’s note.

I had my husband get a blood test. He tested positive (1.5) to HSV-1 and negative to HSV-2. (Although we hadn’t kissed yet since my sores when he got the blood test. He may be HSV-2 positive by now as we recently did kiss.) And just so you know, there is no chance in this world that my husband would ever be unfaithful, never, ever. So I know he has nothing to do with my HSV-2 status.

My questions are as follows:

1. The other 5 teachers working with this child did NOT get the oral HSV-2 (at least that they are aware.) However, all 5 have a history or oral HSV-1 (or at least have gotten cold sores in the past.) These are all very conservative women, who I seriously doubt have HSV-2 genitally, but of course anything is possible. My question is: Could prior history of cold sores have given them some protection or immunity from the oral HSV-2?

2. Is there ANY way (I hope you say yes, ) that the test is wrong and that I have HSV-1 instead of HSV-2? I am so devastated at the HSV-2, that I had to take a leave of absence from work. I can’t enjoy sex, as I’m worried that I’m giving my husband oral or genital HSV-2. I’m paranoid around my children and have trouble cuddling with them, as they are constantly almost bumping my mouth. The HSV-2 status has ruined my life. But it if was HSV-1, my husband would be immune already. And I would try to protect my kids, but would know that if I infected them, that it would just be a virus they’d most likely get eventually anyway.

3. If my kids get this, (and I’m the one who bathes them, feeds them, wipes their bottoms, and cuddles with them, so this is a very real possibility,) I will supervise them going to the bathroom, making them wash their hands before using the toilet. How long do I need to do this vigilantly before I can assume they have developed antibodies and can’t shed it to their genitals?

Thank you so much! I need advice! I feel like the all research that says oral HSV-2 is mild is so wrong! My case is anything but mild! (Oh, and I was so careful not to self-inoculate, so thankfully, I have no issues genitally.)

[Terri Warren]

This is indeed an unusual situation. I have a couple of questions for you. So you’ve never had a positive swab test from the mouth lesions, is that correct?
It would be very surprising if this child had frequently recurring HSV 2 on his mouth. So many many things speak against that but antibody testing for children is not advised as there are many false positives on this test in children. Also, we do know that oral HSV 2 traditionally recurs extremely infrequently. Your doctor keeps telling you that this doesn’t look like herpes so I think further clarification is needed. We know that when people test with an index value of 1.1 to 3.5, half of those results are false positives. So yes, you definitely need confirmatory testing. The suggested test is the herpes western blot. It is done at the University of Washington and you can get this test done a couple of ways. You can contact the UW lab and get a test kit sent to you for your doctor to draw and send back to them. Or you can become a phone patient of our clinic and we can order the test at a Quest lab near you. We can order this in all but five states. These are the only ways you can get this test right now. You need to get it done.

A history of cold sores may offer some protection to your co-workers, yes

I have addressed your second question above.

I would advise you not to make a huge deal of this with your kids. If you have a lesions that actually tests positive for HSV 2 from your mouth, just be careful not to kiss your kids on the mouth when you have a mouth sore. We don’t want your kids to develop antibodies to HSV 2. I would advise against supervising your kids with every move as you are suggesting – you could make them quite fearful. I seriously doubt that they will get it genitally if you do have it orally which we are not sure about anyway. Please be calm and get the confirmatory testing that you need.

You have two more questions – feel free to ask.

Terri

[Daisyann]

Thank you for your response! My plan is that if I get one in the next few days to have it swabbed again, as my only culture did not come up positive. If that doesn’t happen or if it comes up negative again, I’ll get the Western Blot you mentioned. You seemed to indicate that this would give me a definitive answer.

I am wondering if this kid and I have some kind of mutant-strong version of HSV-2, but I was told by several professionals that such a thing does not exist.

Thanks for giving me two more questions, I’ll ask them now. (I had thought that I asked all three in the first post… so thank you.)

1-Assuming this is HSV-2, I do not understand why I am having so much trouble. I do have a good immune system. I was very rarely sick as a child. Although I do get sick now from all the kids I’m around, I always recover fast- faster than the other teachers, actually. My question, is could there be something wrong or different about me other than my immune system that is causing my inability to clear this out of my system in the normal time frame? I’m not in the medical profession so I have no idea what I’m talking about here… but could my body have some kind of deficiency, ability, or inability that I don’t know about? (I understand that yes, obviously there could be something wrong with me that is affecting my response to this virus in a negative way… but is there something (known) found in studies that makes people have a hard time with herpes other than a poor immune system? I’m on such very high doses of anti-virals, and still getting them. (Again, assume for the sake of this question that this is herpes. I truly do believe this is herpes, just hoping so much for hsv-1 instead of hsv-2.)

2-I know self-innoculation is very rare once a person has developed antibodies. Do you have any idea what the actual figures are regarding self- inoculation once a person has developed antibodies? I read that developing antibodies is like being vaccinated…. but people get vaccinated against chicken pox and a minority still get a minor outbreak. My husband and I have a plan what we’ll kiss until he gets the oral HSV-2 and then once he has had it for many months, to not worry about passing it to each other genitally. I understand there will always be a small risk or getting it genitally once antibodies have been established… but do we have an idea of what that risk is specifically?

Thanks so much. I am freaked out. But your calm tone has helped me. And no matter what happens regarding this virus and my husband and kids, we are a solid, loving family who will cope together. I just need to remember that.

[Terri Warren]

1. I don’t think there is some basic problem with your immune system, no, certainly not at this point. I don’t think you have any where near enough information to decide that or even worry about it yet.

2. You should have a good immune response four months from infection. Having antibody does not mean you won’t have outbreaks, you know, if you do have herpes. It just means you have mounted the immune response and are extremely unlikely to get this in a new location on your body.

Your plan of getting your next symptoms swab tested is a good one. Be certain they are using the best test, the HSV PCR test, NOT culture. PCR is far more sensitive and be certain that it is typed (HSV 1 or 2) if positive.

You have one more post/question should you need it.

Terri

[Daisyann]

Thanks, I have more questions, but after the recent culture didn’t work out, I am getting a Western Blot tomorrow. If it turns out positive, I’ll pay for more questions then.

Thanks for your help!

[Terri Warren]

Sounds good, keep me posted if I can be of any help.

Terri

[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.

[Terri Warren]

I do remember you. From the beginning, none of this fit with herpes for me. Contracting this from social contact such as you describe from this child is virtually unheard of. Whenever I talk with someone about the chances that they have herpes I always find it very important to understand the event that spurs their concern. So that doesn’t fit at all.
Now I will answer your other questions:

1) I don’t know it might be because the symptoms are so odd
2) I think if you had 10 swabs that were negative, you could put this behind you (assuming money was no issue)
3) Yes, that happens all the time! That’s the majority of what I do here is to clear up false positive ELISA tests by ordering western blots. I don’t believe for one second that you have HSV 2.
4) He likely isn’t breaking out because you don’t have herpes, would be my guess
5) I guess you will find out if you have HSV 1 from the PCR swabs right? We don’t know the exact sensitivity of the western blot for HSV 1 but we think it’s pretty darn good.

Do the PCR swabs and see what you get. Honestly, I believe that something else is going on. Oral herpes is not something that normally isn’t easily apparent to people looking at you, rarely causes problems inside the mouth and certainly doesn’t happen as often as you are describing.

Terri

[Daisyann]

Terri,

Thanks for your reply. If it wasn’t for fear of giving this to my kids or other children, I might just give up and ignore these sores. At this point, they come and go within a few hours, causing burning and tingling that is significant, but short-lived.

I have been looking on some herpes message forums and found many people who had a low positive for hsv-2 on the ELISA, but then got a negative on the western blot. For the most part, these people had no symptoms. I haven’t found anyone (yet) who did have symptoms and got a positive on the ELISA for hsv-2, but then later found out it was hsv-1 instead. Since I hadn’t ever read this happening to anyone, I didn’t realize it was possible. You’d think that if a person has hsv-1, that it would show up and that the low positive hsv-2 would be a crossover effect from the hsv-1. My hsv-1 has always been negative, which had made me think hsv-2 was likely.

I’m kind of sick of this whole thing….but yet I do want answers!

I’m going to go ahead with the pcr swabs… up to 10 as you said.

I’ll let you know when I either get a positive swab OR when I’ve completed the 10 swabs that were all negative.

Thanks for your help!

[Terri Warren]

So I have definitely seen people who have lots of symptoms (none of which swab test positive) who have low positive HSV 2 tests and negative western blots. They don’t find out they have HSV 1 instead necessarily and I doubt that you will either. They just find out they don’t have herpes.

Herpes lesions do not come and go within a few hours – they just don’t! And from your description, they are certainly not typical herpes.

You have one more question on this round of your subscription.

Terri

• This reply was modified 7 years, 5 months ago by Terri Warren.

[Daisyann]

Terri,

I did MORE than 10 PCR swab tests, and got a negative each time.

Just to recap my situation, I inquired earlier about my belief that I got oral hsv-2 from casual contact from an special needs child in my classroom. (The child had oozing sores that he was scratching at all day and then literally using those hands to swipe at me.)

Twelve days after school began, I got burning sores on my tongue, mouth, and lips. I got a negative hsv-1 and hsv-2 blood test and a negative cultural. Then at nine weeks, I got a positive (2.52) hsv-2 test. At 12 weeks, the blood tests were back to negative. At 16 weeks, I got a Western Blot that was negative. I then, (at your suggestion,) began PCR swabs. I managed to get some of the liquid from my sores on the pcr swab some of the times, but they came back negative too. I got another blood test at 8 months, also negative. So in conclusion, my lone positive test was the hsv-2 (2.52) at nine weeks. My husband got two blood tests that were positive low positives for hsv-1, although he’s never had visible sores.

I will add that it’s not possible that either of us got hsv-2 from a sexual encounter someone else before or during marriage.

I still get (almost) daily sores that I treat with Abreva. However, starting at the four month mark, no more sores came in my mouth or tongue. They’ve been all on my lips since month four. Also, they also appear at the same spots. They go away within a few hours or maybe a couple of days. They do burn and tingle.

I talked the parents in my classroom into getting a pcr swab of their son , who ALWAYS has sores. I saw the results personally, a positive pcr swab for HSV-1.

I now believe I have HSV-1, as I do believe I got this from the child in my classroom. I’m a bit baffled by the positive hsv-2 at 9 weeks, but believe it was a false positive.

What REALLY bothers me, is never getting a positive pcr swab, even when there’s been significant liquid from a sore on the swab. Does this mean I’m not shedding? I don’t see why I’d get sores so often, yet not be shedding.

A few weeks ago, I decided to try Valtrex again, but I get the same amount of sores. Nothing, including anti-virals, improved diet, dietary supplements, and even “cures” I’ve gotten from the internet have slowed these things down.

My questions are:
1- Do you have any suggestions for me going forward? I do feel better that this is hsv-1, but it’s a really bad strain of hsv-1 I suppose, as the child I got it from always has sores, and I almost always have them.

2-Is it possible I’m not shedding?

3-Can I kiss my kids again?

4-Is there any other test that you’d recommend. I would greatly appreciate it if a test could confirm the hsv-1 or hsv-2.

Thanks!

[Daisyann]

Terri,

I came on here to see if you responded yet, and realized I left something very important out! I visited an infectious disease doctor this spring. It was great timing, because I had just been in the sun a lot and got the biggest blister ever. The doctor felt that visually, he had no reason to question that I had oral herpes. He did say, that he was concerned that I got a blister nearly every day, and prescribed antibiotics to make sure something else wasn’t going on. He told me that if things didn’t improve after the antibiotics, to call his office, and I’d get a prescription for (a higher dose of) Valtrex. I took the Valtrex for 10 days, and got 7 blisters in these 10 days.

So at this point I’m on nothing. (All of my swabs and tests were when I wasn’t on anything.) Again, this kid that I believe I go this from, also always has many blisters.

[Terri Warren]

It is a pity that the infectious disease doctor did not do a swab test of this biggest blister ever. Did you also tell him that all of your PCR swabs were negative and the herpes western blot was negative?

I’m a little confused honestly. You said you believe that you have HSV 1 – I know your western bot was negative for HSV 2 but was it not also negative for HSV 1? The western blot is very sensitive for HSV 1. And you’ve had lots of PCR swabs that are negative for both HSV 1 and HSV 2? And your lesions last less than a day? And you get new lesions while on Valtrex? If all that is true, I’m wondering why you are still convinced that you have HSV 1 infection? All the evidence suggests that you do not.

Just because a preschool student you associate with has HSV 1 does not mean that you do, and the kind of contact you had with this child does not suggest it is likely that you acquired HSV 1 from him.

I don’t have a better test than western blot and PCR. I personally do not believe that you have HSV 1 infection.

Terri

[Daisyann]

The infectious disease doctor had my results from my blood tests and pcr swabs in his hands during my appointment. I’m guessing he didn’t do a swab because I had so many (11) negative swabs already. I guess I should have requested another swab. I’m not sure why I didn’t. He didn’t have the WB results, however. I just told him that I had it done at 16 weeks, and that it was negative.

As far as “maybe this isn’t HSV-1 after all,” the infectious disease doctor didn’t mention anything like that. He did say that it looked like herpes visually. But my regular doctor, the one who did my blood tests and pcr swabs, has said it many times. I think he sent me to the infectious disease doctor to convince me I don’t have hsv-1.

If I didn’t have my own kids, I probably wouldn’t worry about this at all.

I just can’t let it go though, because it doesn’t make sense. I’ve never had any blisters. Then I’m around this kid who is literally oozing and wiping his face all day. He’s flailing at me, and I’m forced to hold his hands to get him to places like the cafeteria and outdoors for recess. I was washing my hands a lot, although at one point of the day, I remember wondering if I had just touched my mouth to remove a hair that blew in… I hoped I hadn’t and thought nothing would occur… until day 12 when I started getting this itchy/painful little blisters. I’ve gotten them almost everyday since, with no difference when I’ve been on anti-virals. I’m in my 30’s, and have never had anything on my mouth (that I recall) before this kid. I would love for this to be something other than hsv, but it’s just too big of a coincidence I think for it to be something else/not from this kid.

I am going back to the infectious disease doctor in July. I’m not sure whether he’ll have any other suggestions.

[Terri Warren]

I’m sorry you are pretty stuck in this place. I so wish there was something I could do to help you but in spite of lots of evidence to the contrary, you believe very strongly that you have HSV 1 infection. Perhaps you should just begin to live the life you believe you have – live as though you are infected with HSV 1 because you are so convinced that you do. perhaps that would make you feel more at peace.

I’m sorry that I have no other suggestions here.

terri

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