Oral HSV2

[worried629Participant]

Hi Terri,

I have a complicated situation and the doctors I’ve seen haven’t been much help. I’d greatly appreciate any advice you can offer on the following situation:

• I’ve had genital HSV1 for many years which was confirmed via a swab test. I’ve also had numerous HSV 1 and 2 IGG blood tests and they’ve always come back positive for HSV1 but negative for HSV2.
• I dated someone roughly 5 months months ago and we both got tested before having unprotected oral and penetrative sex. I was negative for everything except HSV1. My boyfriend at the time tested negative for both types of HSV.
• Since breaking up, I have casually dated 2 guys (at different times) I engaged in kissing and there was also some touching, however they did not touch my genitals and we did not have oral sex or intercourse.
• One guy I kissed had what looked like acne just above his lip, but it could have been a cold sore. I figured that if it was indeed a cold sore, it was probably HSV1 (which I already have). I also had extremely chapped/cracked lips when I kissed him (I realize it was very foolish to kiss with dry/cracked lips and to assume the pimple was HSV1).
• 4 days later, I developed a painful blister on my lower lip that got worse. It eventually burst and scabbed over, taking about 7 days to heal. Since I’d never had a cold sore on my lip before, I suspected I had become infected with HSV2. I have not had any more sores since then.
• 6 weeks after the sore healed over, I decided to get tested for HSV2. My test was done through LabCorp and my HSV2 igg index value came back positive at 1.42. Furthermore, the LabCorp supplementary test was positive. Per LabCorp, if the patient result falls between 0.91 (Equivocal) and 5.00 (Low Positive) Index values, the specimen will reflex to 163006 HSV-2 Supplemental test per CDC guidelines.
I am really shocked because I have always been told that HSV2 is rarely acquired on the mouth.

[worried629Participant]

My questions are:

1. How accurate is the LabCorp supplementary test? I noticed some conflicting info on this forum. For example, in some posts you say that the LabCorp supplementary test (in comparison to Quest) is really quite good and reliable, and based on that, the HSV2 result is definitely correct. However, in other posts, you say that these confirmatory tests (including LabCorp) are not all that great when compared to the western blot. If my LabCorp supplementary test says positive, do you agree that this is very accurate and I should not bother retesting? Have you ever seen someone have a low positive HSV2 IGG index value with a POSITIVE LabCorp supplementary test result that ended up testing negative on the WB?
2. I am extremely concerned about the information I’ve read regarding HSV2 and HIV acquisition. According to CDC and several other sources, HSV2 dramatically increases one’s chances of being infected with HIV. Am I at a much greater risk of acquiring HIV through kissing and oral sex now that I have oral HSV2? I have always had an issue with chapped lips which would make it easier for the HIV virus to enter. Should I always make sure I know someone’s HIV status before kissing? If I do ever kiss or have oral sex again, how likely would I be to transmit the virus to an uninfected partner?
3. Do you agree that if someone has HSV1 genitally, they would be unlikely to get HSV1 orally as well? Additionally, the doctor told me it is rare to get both HSV1 and HSV2 genitally. Is this correct?

Thank you in advance for your help!

[Terri WarrenKeymaster]

I used to believe that the supplemental test was the Biokit but since then I have learned that it may not be that test. You need a western blot to clarify this situation
you only need to be concerned about contracting HIV is your having sex with someone who is HIV Infected. I think in 2019 it is completely appropriate before beginning a sexual relationship to have your partners tested for HIV.
You could have acquire HSV 1 genitally and orally at the same time and are now just having your first recognized cold sore. Or it could not be a cold sore – was swab testing done to determine this? It is highly unlikely to get a new oral infection with HSV 1 when you have it genitally, correct. And it is also correct that is it unusual (but it happens) to have both viruses genitally.
If the sore ever comes up on your mouth again, have it swab tested.
In the meanwhile, obtain a herpes western blot for clarity on your low positive HSV 2 result

Terri

[worried629Participant]

Hi Terri,

Thank you for this information. I will definitely look into getting the western blot done. Unfortunately, I did not get the cold sore swab tested. I will make sure to do that next time. As far as I can tell, the only cause of a sore on the outer lip is HSV? I looked at my test results again and the LabCorp supplementary test info does not mention the biokit. It just says ‘reflex’ but I don’t know what that means exactly.

If the WB tests positive for HSV2, should I assume that I have an oral infection? I have not had any new oral or genital sores since that one oral sore which occurred a couple of months ago. Or would it be more reasonable to assume a genital HSV2 infection (in addition to the existing genital HSV1 infection)? Would new GHSV2 on top of an existing GHSV1 infection have caused any symptoms? Again, I have not had any genital sores for 5 years since I was first diagnosed with GHSV1 via swab test. Also, how easily is HSV2 spread to the mouth via kissing? I read on the forum that some people with GHSV2 also shed the virus orally? Surely this means that oral HSV2 is more easily transmitted and common than the literature suggests?

I’m so baffled by all this. It seems like such odd timing and more than just a coincidence in my case — kissing/touching someone new, getting a painful oral sore a few days later, and then testing positive for HSV2. Maybe it’s not that rare after all. As I mentioned before, the only way I could have been infected is through kissing or touching someone else’s genitals (mine were never touched). If my bf from 5 months ago lied about being negative and I did get this from him, wouldn’t my index value have been higher (I tested 3 months after breaking up with him)? And surely I would have experienced symptoms earlier than 3 months out?

[worried629Participant]

To add to your point about potentially having both oral and genital HSV1, my doctor said that when someone first acquires new genital HSV1 through oral sex (which is how I got mine), sometimes people also get infected orally at the same time – since most would have kissed the infected partner in addition to receiving oral sex. Is this correct? If my cold sore really was HSV1, then I don’t understand why I tested positive for HSV2. Can the IGG antibody tests sometimes cross-react?

My biggest fear is that I may one day pass HSV2 onto someone else. I’ve been doing quite a bit of research about oral HSV2 and found the following information (I want to make sure I have my facts straight): 5% of all new HSV2 infections are oral (95% genital). Oral HSV2 viral shedding is quite rare, occurring roughly 1% of the time – or around 3 days a year. Additionally, not all patients with oral HSV2 will shed – only around 0.08 percent of patients will shed that 1% of the time. If patients take anti viral medication, this may cut the rate of shedding by 50%, so to 1.5 days per year or 0.005 of the time. Thus, if someone has an oral HSV2 infection, it is difficult to pass it onto an uninfected partner via kissing and oral sex (whether medication is taken or not). Is all this correct?

In regards to the HIV question, does HSV1 also increase release of CD4 cells and therefore one’s risk of new HIV infection or just HSV2? Also, all the research discusses genital HSV2 increasing the chances of new HIV infection but not oral HSV2. Why is this? Is it because those immune cells are less likely to be released when the infection is oral? I’m so confused! Also, how likely is someone with an oral HSV2 infection to get HIV through kissing only? Would the risk still be 3-5 times greater (as with genital infection)? I’m trying to figure out if it would be best to know someone’s HIV status before engaging in just kissing (no sex).

[worried629Participant]

I have always made sure to find out a partner’s HIV status before actually having oral sex/intercourse, but I don’t normally ask them to get tested just to kiss (some partner’s I never do more than kiss).

Lastly, if outbreaks become an issue or more questions arise in the future, do you know of any HSV experts in the east coast area that are seeing patients in clinic?

Sorry for all the questions (I will purchase some more now) and thanks again for your help. It is much appreciated.

[Terri WarrenKeymaster]

So many questions! I’ll do my best.

If the WB tests positive for HSV2, should I assume that I have an oral infection?

No, we know the 95% of those who test positive for HSV 2 by antibody test have genital infection and will shed virus from the genitals within a 4 month period of daily home swabbing.

I have not had any new oral or genital sores since that one oral sore which occurred a couple of months ago. Or would it be more reasonable to assume a genital HSV2 infection (in addition to the existing genital HSV1 infection)? Would new GHSV2 on top of an existing GHSV1 infection have caused any symptoms?

People who have HSV 1 first and then acquire HSV 2, can do so with none or minimal symptoms.

Again, I have not had any genital sores for 5 years since I was first diagnosed with GHSV1 via swab test. Also, how easily is HSV2 spread to the mouth via kissing?

Not easily at all
I read on the forum that some people with GHSV2 also shed the virus orally?
Not unless they are actually infected with HSV 2 orally. It doe snot spread from the genitals and come out of the mouth.
Surely this means that oral HSV2 is more easily transmitted and common than the literature suggests?
See above.

To add to your point about potentially having both oral and genital HSV1, my doctor said that when someone first acquires new genital HSV1 through oral sex (which is how I got mine), sometimes people also get infected orally at the same time – since most would have kissed the infected partner in addition to receiving oral sex. Is this correct?

Yes

If my cold sore really was HSV1, then I don’t understand why I tested positive for HSV2. Can the IGG antibody tests sometimes cross-react?

Yes, sometimes they can, which is why the CDC and I recommend the western blot to clarify your situation. There is an 85% chance this is a false positive.

We know that AT LEAST 95% of people with HSV 2 have it at least genitally – it could be more. It is probably more common to have both oral and genital infection with HSV 2 than oral only but this is an area we are somewhat unclear about

Because oral HSV 2 recurs and activates infrequently, it is not felt to be an HIV risk, nor does genital HSV 1.

You are WAY ahead of yourself here. You have leapt from a low positive HSV 2 to thinking this could be an HIV risk! In reality, it is most likely a false positive and you need confirmatory testing. At this point, I’m not going to answer any more questions about HSV 2 in you until you find out if you actually have HSV 2. If you do have HSV 2 confirmed by western blot, I will be happy to go into this with more depth with you.

Terri

[worried629Participant]

Thanks, Terri. I ordered the WB kit today and will let you know my results as soon as they come back.

I have a few additional questions:

1. If I truly have both oral HSV1 and genital HSV1, why would I have had only this one recent oral outbreak (which was very painful) but three past genital outbreaks? Especially since oral HSV1 reactivates much more frequently than genital HSV1. Surely I would have had more oral than genital outbreaks? I am 100% sure that I have never had an oral sore before this recent one.

2. In a previous post, you said that in your experience, once a person has a false positive ELISA, they always do, or most always do. I have had dozens of herpes tests over the past 7 years and never had a positive HSV2 igg result. This is my first one. So given that I’ve always tested negative, does it seem unlikely to you that this is a true false positive?

3. I’ve read conflicting info about having genital HSV1 and then subsequently acquiring genital HSV2. Some info says that outbreaks may be less severe if a new genital HSV2 infection is acquired on top of an existing genital HSV1 infection. Whereas other sources say it will likely increase the number of outbreaks. Which is generally more likely?
4. How many cases of people infected with both genital HSV1, genital HSV2, and oral HSV1/HSV2 have you seen in the past?

[Terri WarrenKeymaster]

We honestly don’t know why people have more or fewer outbreaks in various locations so I’m afraid I cannot answer that question.

It’s difficult to say because you don’t know how high negatives have been in the past – they could have been high negatives and this one is not much different except over the cutoff. The other thing is that the lab could have changed test brands or it could have been done by a different lab? Different tests come up with different results sometimes.

Oh, definitely a milder first infection with new HSV 2 but more outbreaks because HSV 2 recurs more often than HSV 1 genital infection

I have seen perhaps 5 cases in 35 years of people having both genital HSV 1 and 2. And I have never seen someone with both HSV 1 and 2 orally that I know of but then I’ve only seen perhaps 15 cases of oral HSV 2.

This is your final post on this subscription. If you have more questions, feel free to renew

Terri

• This reply was modified 3 months, 1 week ago by  Terri Warren.

[worried629Participant]

This is very helpful information, thank you. I’ve purchased more posts as I still have some additional questions.

1. How many cases have you seen of people acquiring BOTH an oral and genital HSV1 infection (that was acquired at the same time by kissing and receiving oral sex from someone infected)? Is this common?

2. Can cold sores sometimes occur INSIDE the mouth (I know canker sores do)? So someone could mistake them for canker sores? Or inside the nose?

3. Are cold sores usually accompanied by swollen neck glands and feeling run down? Even with recurring cold sores, not just the first outbreak? My mum has had oral HSV1 since she was a child and gets cold sores once a year. She says she always feels feverish when she has an outbreak.

4. What other conditions can be mistaken for oral herpes? Staph infection of the lip? Would that go away on its own?

5. I called Labcorp to get some more information about their supplementary test. They said they don’t use biokit. They use the Chemiluminescent immunoassay (CLIA). How effective/accurate is this assay in your opinion?

6. I also found this information on the Labcorp website: Reflex of specimens equivocal and low positive for HSV2 type specific IgG to another assay — a membrane based immunoassay.

What does this mean? Is CLIA a membrane based assay? I thought CLIA was usually the primary test or is this a totally different test to a type specific IgG antibody test?

7. Lastly, am I correct in thinking that the LabCorp and Quest tests only look for one type of protein, whereas the western blot looks for all?

Many thanks again for your help!

[Terri WarrenKeymaster]

1. How many cases have you seen of people acquiring BOTH an oral and genital HSV1 infection (that was acquired at the same time by kissing and receiving oral sex from someone infected)? Is this common?

I have seen some of this, yes, of course, but I think more often I have seen people present with HSV 1 symptoms in only one location, even though both sites were exposed.

2. Can cold sores sometimes occur INSIDE the mouth (I know canker sores do)? So someone could mistake them for canker sores? Or inside the nose?

Yes

3. Are cold sores usually accompanied by swollen neck glands and feeling run down? Even with recurring cold sores, not just the first outbreak? My mum has had oral HSV1 since she was a child and gets cold sores once a year. She says she always feels feverish when she has an outbreak.

Yes, I think that is pretty common

4. What other conditions can be mistaken for oral herpes? Staph infection of the lip? Would that go away on its own?

Or impetigo or something called angular chelitis

5. I called Labcorp to get some more information about their supplementary test. They said they don’t use biokit. They use the Chemiluminescent immunoassay (CLIA). How effective/accurate is this assay in your opinion?

Hmmm, I wondered about that. I cannot say anything about its accuracy – I don’t know.

6. I also found this information on the Labcorp website: Reflex of specimens equivocal and low positive for HSV2 type specific IgG to another assay — a membrane based immunoassay.
It’s the style of test.

What does this mean? Is CLIA a membrane based assay? I thought CLIA was usually the primary test or is this a totally different test to a type specific IgG antibody test?

CLIA is also a national certification for laboratories – here, it is just an abbreviation

7. Lastly, am I correct in thinking that the LabCorp and Quest tests only look for one type of protein, whereas the western blot looks for all?

Correct.

Terri

[worried629Participant]

Hi Terri,

I received my WB results today and the test came back negative for HSV2, positive for HSV1. I can’t thank you enough for all the information you provided me through this process. Although I understood the facts/statistics, I just couldn’t believe that a LabCorp confirmatory test for low positives could produce false positives as well! I am really concerned about people receiving low positive/positive supplementary tests from the major labs and then thinking that they have HSV2 for the rest of their lives, when they really don’t. It’s quite scary how inaccurate these LabCorp/Quest tests are. It also concerns me how uneducated 90% of the physician population is on this topic, even infectious disease specialists. It took a lot for me to persuade my physician to order the western blot, as I kept being told that the LabCorp confirmatory test is 99% accurate for low positives and the western blot would be a waste of time and money.

I can only assume that the sore I had on my lip 4 months ago was either HSV1 (having it both orally and genitally, as you suggested) or something else entirely. Anyway, thank you again for providing this fantastic resource and for educating us on this virus. If it weren’t for you, I would probably have taken my physician’s advice and not bothered with the WB.

Thanks again!

[Terri WarrenKeymaster]

I’m happy for you with your results. Good job for pursuing this on your own

Terri

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