So confused – need closure

[Confusedmonkey]

Hi Terri,

I have been following u since this entire ordeal started and wanted to share my story with you personally:

In January I received unprotected oral sex from a female (I am a male). We were both naked and there was no intercourse. I can’t be certain of genital to genital contact but if there was it was ever so slight and definitely no grinding or anything like that.
After the ordeal she told me that she had tested positive for hsv1 and hsv2 with an igg test with value of 1.8 and 3.3 respectively for 1 and 2.
2 weeks later I went To an std clinic took and igg test and biokit test and was negative for both.
About 13 weeks after the ordeal I noticed two red patches on my shaft with a ring of dry skin around them. They were a little shiny but weren’t that elevated. I quickly went to the clinic the day I noticed them and the clinic said that they couldn’t swab it because there was no sore or cut present. But they felt it wasn’t herpes.

Took an igg test at 13 weeks and was positive for type 1 at 1.37 and negative for 2. Also took a biokit and the doc told me that was negative.
So here is where it gets interesting !!

So 3 days after that i went to my own primary care doc and showed him the red marks and he said he wasn’t sure what they were and he told me why don’t u test again. So I retook the igg test at 14 weeks. And they both came back negative this time with .2 and .4 respectively.
So finish this herpes testing once and for all I decided to take a western blot at week 18.5 almost 5 months after my exposure and the results were:
Negative for type 1 and INDETERMINATE for type 2!!!!!!!

Then I was going crazy. So fast forward to this week I noticed 2 red bumps/marks on the base of my shaft around the pubic hair area and one on the skin connecting my shaft to the scrotum. No blistering. No pain at all. No itching. Nothing. Derm docs thinks it’s Folliculitis but I mean I’ve never seen anything like this. Ok so now I have had this for four days now. Mostly red and irritated looking. Doesn’t look like a blister or sore I guess!! But then this is all new to me. I’ll try to get a good pic

So my questions:

1) what the heck is my status?
2) I guess indeterminate result on wb could mean I’m seroconverting but really two igg tests at week 13 and 14 and a biokit as well negative ?
Could I be seroconverting this long? I took all the tests the right time with the wb at almost 5 months (4.5 exactly)
3) have you ever heard of a case of someone getting hsv-2 by receiving oral sex?
4) is my hsv-1 result conclusive on wb?
5) what can I do now? What value would taking an igg test now after almost 7.5 months be worth? Or a biokit ? If I were to take these tests and be negative am I finished with this.
6) can someone your office (I took wb through westover) call the uw and see if they can recheck the results?

Thank you for what u do. I’m praying that I can just have closure as this has become almost comical.

[Terri Warren]

When evaluating the results of an antibody test, I take lots of things into consideration
1) the nature of the sexual exposure causing the concern
2) the timing of the test in relationship to the experience
3) past sexual history, prior to the encounter in question

So first, your sexual experience did not put you at risk for HSV 2. From what you’ve written, you did not give her oral sex, she just gave you oral sex, right? So the risk of getting HSV 2 from receiving oral sex is very close to zero, even on the odd chance that she had HSV 2 orally, which is very unlikely. In fact, both of her index values fall into the low positive range so either or both could be false positives.

The timing of having your most recent test drawn at 18.5 weeks is right. Add the extremely low risk of acquiring HSV 2 from oral sex to the correct timing, I seriously doubt that you are seroconverting at this time. There would be zero benefit taking an IgG or Biokit test at this point.

You don’t mention anything about your past sexual history so I don’t know if you’ve had a recent contact before this, have ever been tested for herpes before, or have had any contact since.

No, I have never in 32 years of practice seen anyone acquire HSV 2 genitally be receiving oral sex from someone. Never.

The indeterminate western blot thing is troubling; we are seeing more than we used to on western blots, perhaps because we are sending all low positives for western blot now and that’s the main why we use the western blot. So whatever may be artificially tripping the ELISA test is also causing the western blot to look like it might have a band or two that look like herpes, but not enough to call it positive. It is certainly possible that there is a protein in some people’s body that is the same as one of the herpes antibody proteins that is causing this. We’ll be doing a study this summer, asking for blood from people who have had an indeterminate western blot to look at testing in a different way to see what we get.

If you had had the blot done years ago, it might look just like it looks now. Who knows. You could certainly repeat it in six months, but my guess is, it will look exactly the same. Nothing in the sexual experience that you describe sounds worrisome for contracting HSV 2. If you were my in-person patient, I would say that you are likely NOT Infected. The EXPOSURE just doesn’t fit with new infection, nor the testing.

I doubt that having them look at this blot again would be of any help. Three people have read the blot already, that happens every time. If you do have your bloods drawn again, be certain that you give them the date of the first draw so they can compare the two, that is often useful.

Terri

[Confusedmonkey]

Hi Terri thank you for the very thorough answer. as for my sexual history, i have not had any contact for about 5 months prior to my suspected exposure. Since then i received oral sex from a girl of unknown status however that contact was protected and there was no oral to genital contact at all, as i made sure of it. i actually had an hsv igg test done 4 months prior to suspected exposure in October 2013, both negative.

I agree with you regarding the low chance of exposure to hsv-2 however the indeterminate western blot kinda scared me and continues to scare me, hence the post. i have some follow up questions so please bear with me.

1) in regards to hsv-1 can we conclusively say that im negative after the battery of tests that i took? officially the only real positive igg test i had was hsv-1 at 1.37, then a negative igg then negative western blot (see above).

2) why would an igg test or even more surprisingly a biokit test now be of no use? i assume that if im negative on both or either of these tests now (almost 8 months) then it should be conclusive NO? – is there a fear of false positive?

3) in regards to my previous testing history, i generally get routine std tests now for the past 2 years as part of my annual physical. that being said my physical is coming up in October, should i ask my physician NOT TO TEST for hsv as a test now would be “of no use” as you put it? He doesn’t do or even know what a western blot is for hsv

4)The indeterminate western blot was well explained by you, but the process of seroconversion is what scares me. Obviously some patients with indeterminate western blots seroconvert after a period of time, but you suggest that this is not the case with me. IS this because of the testing date of western blot at 4.5 months?

5) of course most of my fear has been mostly because of the symptoms or perceived symptoms that i have had on my genital area. the three bumps are now mostly gone with the exception of the redness. it is now thursday i noticed them on saturday. no scabbing just redness. the bumps have hair sticking out of them and seem to be only red, the derm doc mentioned folliculitis but i cant be sure. i have a pic maybe ill post it again after hearing your response but its kinda late in the stage…no scabbing occured and no pain at all, no itching either.

thanks again…your knowledge amazes me and your work….doctors, even dermatologists seem to know nothing about this stuff.

[Terri Warren]

1) in regards to hsv-1 can we conclusively say that im negative after the battery of tests that i took? officially the only real positive igg test i had was hsv-1 at 1.37, then a negative igg then negative western blot (see above).

Yes, I would count on the western blot being negative for HSV 1 and believe that.

2) why would an igg test or even more surprisingly a biokit test now be of no use? i assume that if im negative on both or either of these tests now (almost 8 months) then it should be conclusive NO? – is there a fear of false positive?

The western blot is more definitive than the IgG or Biokit. Even if you got negatives on those, which I suspect you would, you would still know the western blot was indeterminate and it would unsettle you, if it still is now, I think

3) in regards to my previous testing history, i generally get routine std tests now for the past 2 years as part of my annual physical. that being said my physical is coming up in October, should i ask my physician NOT TO TEST for hsv as a test now would be “of no use” as you put it? He doesn’t do or even know what a western blot is for hsv

Yup, I would skip the herpes test, if you were my patient.

4)The indeterminate western blot was well explained by you, but the process of seroconversion is what scares me. Obviously some patients with indeterminate western blots seroconvert after a period of time, but you suggest that this is not the case with me. IS this because of the testing date of western blot at 4.5 months?

I don’t suspect seroconversion for the reasons we talked about in the first post, and the fact that you have waited the 16 weeks suggested by the University of Washington to test, yes. You’ve not taken any antiviral medicine, right?

Terri

5) of course most of my fear has been mostly because of the symptoms or perceived symptoms that i have had on my genital area. the three bumps are now mostly gone with the exception of the redness. it is now thursday i noticed them on saturday. no scabbing just redness. the bumps have hair sticking out of them and seem to be only red, the derm doc mentioned folliculitis but i cant be sure. i have a pic maybe ill post it again after hearing your response but its kinda late in the stage…no scabbing occured and no pain at all, no itching either.

thanks again…your knowledge amazes me and your work….doctors, even dermatologists seem to know nothing about this stuff.

[Confusedmonkey]

hey terri,

thank you for the responses….very informative.

i would like you to please elaborate on why another test right now, be it an igg or biokit would be of no value. with the understanding that the western blot is more sensitive a test, if i were to have any of these other tests now wouldn’t i be in the clear? i would actually feel better knowing im negative. this seems to be the case in my mind as normally people who test negative now after almost 8 months would be conclusively negative.

so based on your answer if i still feel the need to retest please advise which test i should take: igg, biokit, western blot and when….you mentioned “in 6 months” 6 months from now or my western blot? —if its from the western blot that would put my test at almost 11 months post exposure…that is an absolute crazy amount of time to figure out my status.

i also have read that there have been cases of the western blot being more accurate after 6 months as opposed to the 12-16 week guideline set forth by uw. Have you ever seen any cases of people being indeterminate after 16 weeks (like me at 18.5) then being positive when retesting this late in the game?

lastly you seemed to not comment on my symptoms for which obviously you cannot see. so today is friday (symptoms started last saturday) and they are all gone maybe some redness but ever so slight….so derm docs and gp’s cannot really diagnose anything by looking as they look pretty different from what i have seen on the web….so the next time i get symptoms is there a way for me to test them outright? i read something about PCR but no doctor knows what that is…where can i get it and when do i swab? time? when there is rednesess, sore, open cut???? mostly everything has been a red bump no open wound, unless i mess with it and try to “pop” it or somehting..

thanks for again,

monkey

[Terri Warren]

If you got a negative ELISA or Biokit, could you put aside the western blot? If not, I don’t think it would help you. If you could, then you should. Your choice
As I said before I think it is likely that the western blot will be indeterminate in 6 months also because nothing you have said makes me think you are seroconverting.

I personally in 32 year of practice have not seen of someone being indeterminate at 4 months and positive at 6 months, but I have read about that happening to people, yes. I have seen people who have taken antiviral therapy taking a long time to seroconvert, but you are not reporting that you have taken herpes medication.
.
If you live in the US, you can get a PCR through any health care provider that uses Quest labs, they just need to look it up in their Quest test directory. I was not concerned about your symptoms because they didn’t sound herpetic to me; dry skin is not characteristic of genital herpes. If you have a blister or an ulcer in the skin, you could seek a PCR. If it would be helpful to you to have a PCR swab done of any symptom, then I think you should find a provider to have it done.

I think it is difficult for you to believe that you have no reason to believe that you have HSV 2, based on your exposure. I hope you can begin to believe that at some point. If you have HSV 2, which I don’t believe you do, it isn’t from that contact.

Terri

[Confusedmonkey]

Hi Terri so I would like to give you an update. So I managed to reach out to my previous partner that tested positive for hsv1 and 2. Being that her postive results (see above) fell into the false positive range I was able to convince her to take the western blot (about a year after my encounter). She thankfully tested NEGATIVE for type 2 and positive for type 1. If u recall or read the posts above I tested negative for type 1 and indeterminate for type 2 and with a western blot almost 5 months post exposure. So my questions now are as follows.

With a negative wb result of type 2 from my partner may I finally able to disregard my indeterminate result on type 2 wb that I received almost a year ago?

This now brings me to the validity of the negative I receiced on my wb for type 1. If u see above I testedd 2 times with igg for type 1 at 13 and 14 weeks post exposure. The first test yield a 1.37 and the second was negative. The western blot for type 1 negative at 18 weeks. Can I count on this to be a conclusive result for type 1? I have read about the wb and igg being less accurate for type 1 so do u recommend I retest or move on with a negative?

The reason for my concern is that I have noticed red bumps on shaft and my bottom lip that appear from time to Time. I haven’t been able to swab them. They appear on my bottom lip and shaft at various times usually a couple months apart. They never sore or scab. In the most recent case there was a red raised spot on my shaft that upon squeezing produced a noodle like white pus and then became red. I do have Fordyce spots on my shaft but can they become red and produce pus?. Most times nothing comes out. I know its hard to diagnose but do u recommend I do anything about this?

How about another test? I would like to be done with this. It’s been over a year 🙁
Can you provide me any additional insight given my previous partners test results

[Terri Warren]

I believe that you can count on the western blot for your negative HSV 1 result. I also think that it is very likely that you are truly HSV 2 negative. That is the guidance from the University of Washington about how to interpret indeterminate western blots over time.

If you have lesions that you are concerned about specific lesions, I would recommend you have them evaluated by a clinician and be swabbed if appropriate.

So your partner tested positive for HSV 1 and negative for HSV 2 (I’ll bet she was happy to find that out), then you didn’t get HSV 2 from her. I’m not sure what else I can do to help you understand her test results.

Terri

[Confusedmonkey]

Do u see any value in taking the wb again??? It’s been long enough. I just feel that these symptoms warrant it. I have never had these symptoms before. Red bump when I squeeze it white pus comes out then a day later clear fluid then a scab? I’m just so tired of not knowing. It’s really hard on me. It’s usually only one red bump every couple months at a time. Sometimes no pus.

Can the wb at 5 months miss it? I know that’s it probably not type 2 due to only oral sex and my partner testing negative. But what about type 1? Plz advise. How about take home swabs? Any advice helps.

[Confusedmonkey]

Does ghsv1 reoccur this frequently? Also bumps on my Lower lip every couple months. ugh it’s getting in the way of my life. This damn uncertainty.

[Terri Warren]

If your partner does not have HSV 2, then I’m unclear why you are still worried about this at all? Are you still concerned that you might have had HSV 2 from a long time ago? It is also possible that whatever caused your previous partner to have a false positive may have also been transmitted to you and is impacting your western blot – just a wild guess.

As for HSV 1 – it generally recurs infrequently, on average, once every other year. So are you feeling that you can’t know if your symptoms for HSV 1 are oral or genital or both? If that is the question then take some swabs might be able to help you with that question.

I do not see any value in repeating the western blot. However, if you were interested in participating in our study at the clinic for people with indeterminate results, we would be grateful and you can be paid $50 for your participation. If you are interested, please contact Rene at our office.

Terri

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