Girl who cried wolf

[beansiegator]

Labia skin right under where mons hair starts:
12/31/13 Tue: looks normal but slightly pink
1/2/14 Thurs: Notice pink bump of skin w/ darker pink 1.5 mm bump next to it. I apply Tend Skin which stings- unusual. A few hours later the area of the 1.5 mm red bump looks like two red pinprick spots, almost like two tiny pores. By 10 pm it looks like a white area of skin surrounded by a raw circle. White area appears firm, not soft, almost like a core you could express (but it wasn't).
At urgent care next morning (Fri), MD says looks like hair follicles; MD takes culture/immunofluorescence which stings- she used both cotton swab and "broom" plastic swab. MD calls me same afternoon to say they had an insufficient nondiagnostic sample on immuno. Nervous culture would also fail, I went to urgent care again that evening- PA says looks like herpes, which she sees all the time, bc its a painful pink shiny ulcer; takes another culture. Next morning (Sat) I feel splitting sensation as I pulled apart my labia to look, almost as if I reopened it. Same appearance Sat as Fri- a small, faint ulcer on a pink bump/patch of skin (ulcer defined as a raw spot that moistened tissue when touched). By Sun morning bump is no longer pen or raw. Mon, 1/6 skin looks healthy with faint pink tone and a white bump (not a whitehead, a little bump of skin lighter and softer than the rest. If I scraped it, flakes of dead white skin sloughed off). Tues, 1/7 hard to find unless looking.
Also, I took diflucan Tues, 12/31- I'm a hypochondriac and visited gyn for red (possibly raw) 2 mm spot on the mucousal skin behind my fourchette. Gyn dismissed it as nothing but said my vagina looked generally irritated and I had minor itching (normal for me); she saw yeast under the microscope. Ive been told my skin looked irritated before when i didn't agree- I didn't really notice the irritation she saw and doubt I had a yeast inf but wanted to give u the full background.
Both cultures neg, igg 1/2: 0.19/0.00

[Terri Warren, RN, Adult Nurse Practitioner]

Good plan.  

Terri

[beansiegator]

I am going to leave this alone for several months and let the time tick by.

You are really patient and helpful and I appreciate it!

[Terri Warren, RN, Adult Nurse Practitioner]

1)  It picks up a few more HSV 2 positives than the traditional IgG tests, however, it takes longer for the western blot to indicate a positive result than the ELISA, after an exposure
2) With low positives, I would say the rate of indeterminates is about 5-10%, don 't have those exact numbers.
3)  4 months from any possible infection.

Terri

[beansiegator]

OK, I see what you are saying and this is really helpful. I don't mind having HSV-1 because so many folks have the antibodies. So even if I found that out via Western Blot that I had HSV-1 (and then had the problem of wondering if it was genital versus oral), I would not feel too troubled.

Just as a note of interest: I was told today that my lab doesn't do an ELISA, they do a chemiluminescence immunoassay. From the research studies available on Google, it seems that test finds more positives (confirmed by WB) for HSV-1 than HerpeSelect and Captia, finds similar rates of positives for HSV-2 as HerpeSelect, and finds less positives for HSV-2 than Captia.

It sounds like you are saying that HerpeSelect and Captia are just as good as each other, so I will move forward with one of them as a back up test.

My FINAL questions (I'm sorry, I promise):

1) If I do pursue a Western Blot, is there a statistic on the % of HSV-2 infections picked up? It would be superior to any ELISA or other test on the market, right?

2) How often do folks get indeterminate on the WB for HSV-2? Quite rare or fairly often?

3) How long should I wait to get WB if I do?

Thank you so much for your help! My doctor just doesn't really want to know, she thinks its my anxiety disorder. which, it probably is in part :). I know it's just a skin condition but the uncertainty almost tortures me more than the reality.

[Terri Warren, RN, Adult Nurse Practitioner]

I think I just missed your follow up question, sorry.  
It won't help to get a test with a different brand as they all look for the same thing.  The most common tests are Captia and Herpeselect and they yield virtually the same results.  

To me, it sounds like if you do have herpes, and that's a big if, it is likely HSV 1, not HSV 2 as the ELISA test falls down in sensitivity far more for HSV 1 than for HSV 2.  I would suggest that you wait 16 week from possible infection and retest with the normal tests.  If that satisfies you and makes you feel comfortable, then I would leave it at that.  If you are still concerned, and I suspect you will be, then you might consider acquiring a western blot to rule out HSV 1 infection.  If then, the HSV 1 is positive on the western blot, you still will not know if your infection is oral or genital.  Do you see the problems here?

Terri

[beansiegator]

Hi Terri,

I saw your posts from earlier today and didn't know if you missed mine (please do let me know if you'd like me to pay again, I'd be happy to do that as well). I just have these final questions:

1) I'm going to find out the brand of igg I have had, and then get a test by a different brand to see if anything pops up on that one. do you think this would help minimize the rate of false negatives?

2) should I believe that I have HSV even if my 16 week igg remains negative (just because of the symptoms), or should I believe I do not?

3) Should  I get a Western blot? I'd probably rather not because if it's indeterminate as seems to be common (?), that would just leave me with more questions than answers. But then again, I want to be as responsible as possible.

Thanks so much for your help!!!

[beansiegator]

Thanks, Terri...I guess I am simultaneously worried that maybe I could have had this since I first had sex 9 years ago, and just have false negative blood tests, as much as I am also worried he cheated. I've had a lot of partners through my lifetime, but I had only had sex w/o a condom 5 times ever until these two partners.

Provided I test negative for HSV-1/2 igg 16 weeks after the symptoms, should I still assume I have herpes b/c of the symptoms, or should I assume I do not b/c of the tests? Would it be necessary to have my boyfriend be retested (or do you recommend a Western blot for me)?

It just scares me so much that there was an ulcer on my labia, but then again, it healed up so fast and never crusted or scabbed at all- is that somewhat helpful?

[Terri Warren, RN, Adult Nurse Practitioner]

1) you can retest after 16 weeks have passed since any worrisome encounter, yes.
2) That could be some sort of lab entry issue.  We rarely get a .00 but I don't think it suggests a false negative.  Western blot does pick up a few HSV 2 infections that the ELISA misses, but not many
3)  no
4)  no
5)  I suppose it could be a trauma ulcer or a bacterial infection that caused an ulcer.  I don't get why you are worried about infecting your boyfriend - I thought it was him you were worried about cheating on you?

Terri

[beansiegator]

Well , I guess I have some specific questions since you are an expert. my Dcotor has just told me "move on, you are fine" but she also did not see the ulcer.
1) From reading this forum, I guess I should retest 16 weeks after the symptoms (to rule out that my boyfriend cheated)?
2) does the fact that I am getting 0.00 twice for HSV-2 suggest a false negative? Does the Western Blot for HSV-2 pick up some false negatives, or just for HSV-1?
3) Do you think the alcohol in Tend Skin would cause a false negative culture?
4) Does the negative IGM provide any reassurance (taken 12 days after start of symptoms)?
5) If everything comes up negative months down the line, should I assume I still have HSV? What Else could cause a small ulcer on my labia? I got fissures once from a yeast inf but this was round and seemed to be preceded by a bump.

Thank you so much for your help...my doctor is saying move on, but I feel guilty if this is a false negative test, I don't want to infect my boyfriend. Im also thinking if he gets retested and is still negative its reassuring?

[Terri Warren, RN, Adult Nurse Practitioner]

Then it does sound like your risks are low, right?  I'm not sure I have anything to add here that would be helpful to you.

Terri

[beansiegator]

Yes, I do. The partner with a cold sore did not give me oral sex. My boyfriend hasn't had a cold sore in about 20 years, but he definitely has HSV-1. He hasn't given me oral since about October or November though.

[Terri Warren, RN, Adult Nurse Practitioner]

You know that you can contract HSV 1 genitally, right?  You state that your former boyfriend's test results were negative, but he is positive for HSV 1 and your other partner is likely positive for HSV 1 since he had a cold sore at the time you had sex.  Was he the giver of oral sex to you?

Terri

[beansiegator]

Sorry to take more info, but my doctor just emailed me results of an hsv 1/2 igm (drawn 1/14): negative, no numbers given.

thanks for listening to me.

[beansiegator]

Sorry, that last number was a typo. it should read 0.19 on the HSV-1 value. Also, the cultures were not PCR, they were viral. And I am wondering if the Tend Skin would cause a false negative, because it contains Isopropyl Alcohol, Butylene Glycol, Acetylsalicylic Acid, Cyclomethicone, Glycerin, Diglycerin, Polysorbate 80. I used it two hours before the first culture, and about 10 hours before the second.

[beansiegator]

I have been having unprotected sex w/ my boyfriend regularly since 7/2013. He has a negative igg from 7/2013 (HSV-1 positive, HSV-2 negative). His last partner was about 6 weeks prior so I suppose it's possible he was infected by her and didn't turn positive, but they only slept together twice and she seemed low risk and he has not had any symptoms. we have not had oral sex since probably October/November.

However, we did break up briefly in November - i had unprotected sex w/ an old partner on 11/17. I assumed this was from him (though I thought 7 weeks was a long incubation period?), until I saw the negative igg on 1/14. That partner's doctor doesn't test for herpes as a rule. He had a cold sore the night we slept together, has never had genital symptoms and has tested negative for all other stds. We did not have oral.

Also, this is the second time I have literally gotten a 0.00 on the hsv-2 igg. Is there something wrong with me not getting a numerical value? My values are as follows:

Component HSV-1 IGG HSV-1 INTERP HSV-2 IGG HSV-2 INTERP
Latest Ref Rng <0.90 ISR <0.90 ISR
7/17/2013 0.21 Negative 0.00 Negative
7/24/2013 0.23 Negative 0.04 Negative (repeated b/c I was nervous about 0.00)
10/30/2013 0.21 Negative 0.04 Negative (done as yearly physical)
1/3/2014 0.28 Negative 0.02 Negative (done same day as culture)
1/14/2014 .019 Negative 0.00 Negative (repeated due to neg culture results)

[Terri Warren, RN, Adult Nurse Practitioner]

Your description certainly sounds concerning for herpes but if the cultures were negative, that makes it all less clear.  

In terms of interpreting your antibody tests:  when was your most recent sexual encounter, prior to the blood draw?

Terri