[Question #1400] HSV diagnosis? IgG vs. Western Blot?

48 months ago
Almost two years ago, I developed what I thought was a canker sore on the upper/inside part of my bottom lip. It was visible when I had my mouth open, but otherwise not obvious &far from the vermillion border. It was painful, & took several weeks to heal. I had had what I thought were canker sores in the past, as a young adult -small ulcers on the insides of my cheeks. This was very similar, but the location on my lip was different. W/in a week of the first sore healing, a second spot developed right next to where the first one had been. It was very small (smaller than the top of a pen), & painLESS. Two different urgent care providers diagnosed it as HSV based on clinical exam. One of them did a swab (NAAT), but he cautioned that even if it came back negative I could still have HSV because the ulcer was so small that there simply might not be enough virus there to detect. The NAAT swab did come back negative. Since then, I've had a second NAAT done, plus a viral culture, as well as four IgG tests at various points in time over the last 18+ months. Everything has come back negative. Yet I have continued to have these "lesions" (for lack of a better word) almost without ceasing. They appear 1 or 2 at a time, on the inside of the buccal mucosa of my top or bottom lip. They've all been painLESS except perhaps 4 of them that did hurt.  Almost as soon as one heals, another one appears. I have seen 6 different providers in an attempt to figure out whether this is HSV. The first five all seemed to think it probably was, though some of them just said they couldn't be sure.My regular PCP said even though the IgG kept coming back negative, I could still have HSV & just never seroconvert. Then recently I went to a very reputable nationally/internationally recognized hospital. I saw an MD w/a lot of expertise & experience with STIs. She stated emphatically that I did not have HSV and that the results of the IgG could be trusted. Should I pursue a Western Blot?
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
48 months ago
So our most recent study comparing the results of the IgG test and the superior western blot show that the HSV 1 IgG misses 30% of infection and HSV 2 IgG misses about 5-7% of infections.  So I do not agree fully with the MD that you saw you attempted to reassure you that the IgG could be trusted.  However, having said that, it would be very unusual for herpes to continue to recur like this with this frequency.  If you were my patient, yes, I would start with the western blot.  If that is positive for HSV 1, then I would ask your provider for PCR swabs to take home and gather a few more swabs from the lesions.  If they are negative, then I would assume that the lesions are NOT herpetic.  Another option would be to try taking an antiviral medicine for a few weeks and see if the lesions change. 

Terri
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48 months ago
Let's say I live out of state from the University of Washington. What are the risks of something happening during the transport of my lab specimen that could affect the results? Could something happen to predispose it to either a false negative or a false positive? (Such as, perhaps, contamination? Not being stored properly? etc.) It seems like a lot could go wrong...?

Also, could you maybe help me understand... It seems like what I am reading and hearing is that the majority of Americans have HSV, and that most people acquire oral HSV 1 as children. BUT it also seems like when I ask about various scenarios and the level of risk of giving HSV to my kids, the consensus is that the risk is very low. ***So...how are all these kids getting oral HSV 1?*** I'm just struggling to understand....

If, for example, it is unlikely that I would acquire HSV from drinking from the same straw as someone who has an active cold sore, then what kind of contact are kids having with the virus that leaves them infected? Is it from adults with ACTIVE cold sores kissing the kids' cheeks? Or ASYMPTOMATIC adults kissing the kids' cheeks? When I asked my doctor, she said she thought it was more likely that it was being spread by respiratory droplets as people sneeze. When I then asked whether this created concern over sneezing while changing a child's diaper and risk of the child then acquiring genital HSV, she said that it was unlikely but that if the child had a diaper rash the risk would be higher of course. I am very confused.  
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
48 months ago
If the sample as shipped per the instructions in the kit, nothing will happen to the sample that would make it a false positive or false negative.  We've been shipping them for years and no problems.
I think you might be reading old data.  It used to be that the average to acquire HSV 1 was in childhood.  That's when people had no idea that "cold sores" were herpes.  Now it seems like most people realize that and don't kiss their children or grandchildren while they have a cold sore, so we see the average age to acquire herpes is now much older and because teens don't have antibody going into their sexual maturity, their first HSV 1 infection could be genital from receiving oral sex from someone who does have HSV 1 orally.

Drink straws are not a risk, asymptomatic kisses to a child is not a risk, I totally disagree about respiratory droplets transmitting disease.   All experts that I know agree.

Terri
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48 months ago
Thank you. I appreciate your reply. That seems reasonable to think that I might be looking at old data. Thank you. 

So - would it be accurate to say that the only way a child is going to acquire HSV from their parent is if the parent has an active cold sore and kisses the child?

I suspect that you will tell me this is nonsense, but I would like to just ask the question anyway. When I was trying to look up information about how HSV is transmitted, I came across a webpage that looks like it is an official site in Canada (Public Health Agency of Canada). It is a 'Pathogen Safety Data Sheet.' Under the section 'Mode of Transmission,' it states that HSV can be transmitted via respiratory droplets. This is the website: 

http://www.phac-aspc.gc.ca/lab-bio/res/psds-ftss/herpes-eng.php#footnote14

When I scrolled down to look at the footnote connected with that statement, this was the reference:  Whitley, R. J. (2006). Herpes simplex encephalitis: adolescents and adults. Antiviral Research, 71(2-3), 141-148.

I am having a lot of concern about even BREATHING on my kids' laundry these days. Especially their undergarments. I know HSV is NOT airborne, but the whole respiratory droplet thing seems tricky to me. ***Please help me to understand so that I can move on from this.*** I just want to do my very best to protect my kids...but it is hard to understand what is good due diligence and what is overkill. And I've been trying to clarify with my doctor, but I am just ending up more confused and worried after talking with her. 

Please... I would really, really be so grateful if u could help me understand. ***Is there any possible way I could somehow transmit enough virus so as to be infectious while folding their laundry or helping them get dressed? Like by sneezing on it or just "spraying" my spit accidentally while talking or breathing? And the same questions specifically in regards to changing diapers, which seems even riskier since their bare skin is exposed?***
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
48 months ago
I have to say I would be surprised if Dr. Whitley believed this at this point.  I have also seen the droplet thing on other websites but this just makes no sense. 
There is no possible way that you can transmit enough virus to be infectious to your children while folding their laundry or helping them dress or changing diapers or sneezing or coughing on them. 

Terri
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48 months ago
Thank you so much. I appreciate the information that you are giving me, and as I read it it IS helping me to let go of some of my concerns. 

I do think I will proceed with the Western Blot. Do you have any suggestions as to how to go about that from out of state, or do I just need to call the number on the U. of Washington's website?

Also, I don't mean to beat a dead horse here, but after so much misinformation from other providers, it's become a bit difficult for me to let go of all my concerns. You have been so helpful, and I hope you might be willing to bear with me just a bit more. 

*Could you refer me to some studies or other sources that discuss/demonstrate the relatively "large" amount of virus required to transmit this disease? Or perhaps there is another "ask the expert" type venue that you believe is reputable where I could ask the same question? I respect your analysis very much, and you seem like the most knowledgeable person on this this subject BY FAR that I have encountered.  It's just that after all the contradictions i've had to navigate through up til now,  I would just really love to hear the same answer from two providers. 

*If my mouth lesions are herpetic (although I hope they are not), should I be doing anything special with my laundry? Should I wash it separately from the rest of the family? Should I use warm or hot water? Is cold water ok? Maybe the temp doesn't matter at all bc the detergent plus the agitation of the wash cycle would be enough to render the virus in-transmissible?

As another note, I noticed a small bump on the inside of one of my labia about four or five months after I had the first mouth lesion. It was just slightly raised and kind of red, but not painful at all. It was gone within about 48 hours. I exercise a lot and I'm embarrassed to say it had been 2 or 3 days since I'd showered, so I was hoping it was just some sort of irritation or clogged pore or something as a result of the sweat/friction/not washing. I had a NP look at it and she said it didn't look at all like herpes, but I'm not sure how much she was familiar with what seems like could be a huge range of presentations of herpes.  In hindsight I wish I'd tried to have it swabbed, but it just didn't occur to me at the time...and I'm not sure exactly what they would have swabbed since there wasn't any fluid or anything. But ever since then I've been afraid that I somehow auto-inoculated, so I've been washing my hands after handling my dirty laundry and washing all my stuff separately. I've also been nervous to let the kids climb in bed with me, bc I'm afraid the sheets are contaminated. What do u think?
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
48 months ago
Here is an article by Shiffer and Wald that discusses the quantity of virus required to infect someone genitally.  I see no reason why that would be different for oral infection.  As you can see from the summary it is a very substantial amount of virus. 
You do not need to do anything about your laundry at all other than what you are doing already, whatever that is.  The temp does not matter
I think you are just fine

J R Soc Interface. 2014 Mar 26;11(95):20140160. doi: 10.1098/rsif.2014.0160. Print 2014 Jun 6.

Herpes simplex virus-2 transmission probability estimates based on quantity of viral shedding.


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48 months ago
Thank you very much. I appreciate your reply. I will look at that article today. 

So doing laundry is no special thing. Any need to wash my hands after handling the dirty laundry?

What about my pillow.....? I have been afraid to let my husband or the kids touch it, much less lay their heads on it. I know I drool in my sleep. And when I wake up in the morning, I wonder if I need to change my clothes bc I might have drooled on my shirt during the night...?

Do you have any thoughts about the bump on my labia and whether it sounds suspicious of herpes?

Thank you. 
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
48 months ago
Your pillow is OK too.  I wouldn't worry about anyone touching it, in spite of the drool.   And you don't need to wash your hand after handling dirty laundry.
I can't say what the labia bump might be but if you have concerns about it, I would suggest that you get it looked at if it is still there and you are still concerned.
Overall, and I say this in the kindest way possible, you might have a little obsessive compulsive disorder about your oral herpes.  Or maybe you just need more information about the infectivity of this virus and to be reassured that it is no where near as infectious to those around you as you might think.  I'm so sorry this takes up so much space in your head and likely distracts you from the fullness of life that you want to have, but I can reassure you that you will not infect your children or your husband in the ways about which you are worried.

Terri
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