Negative Western Blot Still Not Convinced

[Crossfat52]

After multiple equivocal IGG tests and a negative Western Blot, I still can't explain symptoms I had and am not convinced I am herpes free. About 10 or so days after protected sex with someone I consider could be high-risk I developed two red, open sores on the base of my penis, They were ulcerated and leaked a clear white liquid, though I don't recall them being noticeably painful. At the same time the sores developed I also came down with a very severe flu, which included an acute sore throat and headaches--I actually had to take a day off work it was so bad, I usually just try to work through sickness like that. After looking at images online and reading typical symptoms I knew immediately it must be herpes, but I was stupidly unaware how sketchy these blood tests are and figured I'd wait and have that done rather than swabbing.

I had an IGG test done at the 1, 2, and 3 month mark, all came back equivocal--the results actually continually lowered each month, with the last test being a .95. I decided to go through with a Western Blot at the 4 month mark, the results came back negative. At first I was elated, finally this journey was over, but I couldn't shake this feeling in the back of my head. All I could think was that there is NO way that first outbreak wasn't herpes. That led me to this forum and I figured I would post my story to hopefully hear any opinions.

I have been staying vigilant, looking for any possible outbreaks I can have swabbed, and I am thinking of possibly having a confirmatory Western Blot done at the 7 month mark if nothing shows, which would be the end of September. I'm sure if I explained this to a doctor or friend they would think I am crazy, but it has been eye-opening to read similar stories here. I am curious if anyone thinks I am being completely paranoid, or if keeping an eye out for something to swab is the intelligent thing to do here? Of course I am going crazy now, thinking every tiny bump I have might be an onset, I really just want to stop having to question this, to the point I am almost wishing to get a positive result.

Edited August 2, 2019 by Crossfat52

[WilsoInAus]

@Crossfat52 I guess the thing is that you have done everything humanly possible to establish status. You are entitled to purport that you do not have herpes.

Of more importance though I guess is what is different about your life now compared to what it might be if you were confident in a negative.

 

[Crossfat52]

5 minutes ago, WilsoInAus said:

@Crossfat52 I guess the thing is that you have done everything humanly possible to establish status. You are entitled to purport that you do not have herpes.

Of more importance though I guess is what is different about your life now compared to what it might be if you were confident in a negative.

 

I suppose nothing major, it would be nice to know for sure if I have it or not. I'm unsure going forward if I should straight up state that I'm negative, or if the honorable thing to do would be to add a caveat with a summary of my story?

If anything at this point I feel like I'm on a mission to prove that these blood tests are sketchy. This whole ordeal has been pretty eye-opening regarding HSV in general to me, when I first read the CDC recommends not testing I was blown away, but after my experience I understand why. The blood tests seem to be all over the place, I was just a few decimal points away from being positive. Hell, the company I used to IGG test sent me texts straight up reading "You've tested positive for HSV2", despite the range in the results clearly reading equivocal. And unless you swab at just the right time (if you even show symptoms) it seems like it can come back negative easily as well, ultimately making it near impossible for some people to test for the damn thing, so why even worry about it? I definitely realize how obscenely overblown the herpes stigma is now.

I'm sure I'll eventually just get over it and go on thinking I'm negative, but I've found similar posts helpful and figured I would share my story/let anyone know if I do eventually end up testing positive.

[Tone123]

24 minutes ago, Crossfat52 said:

I suppose nothing major, it would be nice to know for sure if I have it or not. I'm unsure going forward if I should straight up state that I'm negative, or if the honorable thing to do would be to add a caveat with a summary of my story?

If anything at this point I feel like I'm on a mission to prove that these blood tests are sketchy. This whole ordeal has been pretty eye-opening regarding HSV in general to me, when I first read the CDC recommends not testing I was blown away, but after my experience I understand why. The blood tests seem to be all over the place, I was just a few decimal points away from being positive. Hell, the company I used to IGG test sent me texts straight up reading "You've tested positive for HSV2", despite the range in the results clearly reading equivocal. And unless you swab at just the right time (if you even show symptoms) it seems like it can come back negative easily as well, ultimately making it near impossible for some people to test for the damn thing, so why even worry about it? I definitely realize how obscenely overblown the herpes stigma is now.

I'm sure I'll eventually just get over it and go on thinking I'm negative, but I've found similar posts helpful and figured I would share my story/let anyone know if I do eventually end up testing positive.

According to Terri Warren  you may have a protein that triggers the igG to be positive or in that equivocal range. She also stated it can cause the wb to be intermediate as well. If again intermediate at 3 months later then you're negative. Did you take any antiviral meds. It's the most accurate for type 2. I tested negative on wb at 34 weeks post my exposure to type 2. 9 months post and still negative on igG.  From all I've read hsv1 is the trickiest of the 2 for an accurate reading as it misses 30% on the igG. Wb is most accurate and I'd feel assured about it. I've actually explained my situation to my gf and told her of my exposure and the fact that I'm negative according to science and I've never had blisters to swab. I want to refrain sex for a while longer as I want to do another wb here soon. Closure to a year mark honestly. Your situation of sores. Could very well be bacterial and staph. Then again stay vigilant. 

[Tone123]

11 minutes ago, Surprise said:

U know ur body and when something doesn't feel right. Have u been taking anything? Do u have hsv1 oral? I feel like I have come into contact with hsv2 and I'm still not sure about the out come but I know my body. It doesn't feel the same since I was exposed LISTEN to ur body it will talk to u ( send you signals that something is wrong). Follow ur heart I noticed on this forum that some people have similar symptoms and some don't my suggestion is to re-test I read on another forum that a person took over a year to test positive

I read the same and it's mostly hsv1 that takes a long time to show positive. I'm trying to figure out if an established hsv1 infection will help fight off hsv2 upon infection until it hides in the nerves leaving it undetected from the immune system not allowing it to make antibodies for type 2. Terri Warren said it doesn't work like that. She's not dealing with hsv2 tho. I would think the human body will make antibodies especially in the ones with no allergies. My inlaw who is a doctor tells me the ones who have a weak immune system will seroconvert at a later date. A good sign to know is the ones with no allergies to nothing then that's a good sign of the body doing its work. Meaning the immune response will definetly be there. If you have allergies to things then it may be slow to build. I'm just not too certain about the hsv1 established infection slowing antibodies for type 2. Cdc says 3 to 6 months and university of Washington says 12 weeks for western blot. I'm sure they've done their homework so we really can't go against what they say. 

[WilsoInAus]

@Crossfat52 on your points.

You are entitled to suggest you are negative. I see that it would be honourable to suggest something like "for my own edification after a partner and feeling something might be amiss, I tested with the best test known to man regarding HSV and it was negative".

Remember just because you are negative for herpes doesn't mean you should stop 'listening' to your body, just that it could be telling you anything.

[Crossfat52]

Well, I thought I would give a quick update to this thread. About two weeks after my original post I noticed a (very) small lesion where my original symptoms occurred. I didn't waste a second and went to an urgent care facility and had it swabbed. They didn't offer a PCR swab, only a viral culture, but the PA that swabbed mentioned since the lesion was so new it should be accurate if anything is there. I told them my original story and they agreed my symptoms sounded like herpes, and they suspected this lesion would come back positive, despite being so tiny.

8 days later, and I got back a negative result. I'm putting this thing behind me, and unless I get very obvious symptoms I'm done stressing about it. I know my brother had a problem with hypochondria, maybe it runs in the family, though I feel like I was pretty justified in thinking I had it (and who knows, maybe I do and that was a false negative). I think HSV is the perfect hypothetical diagnosis to get worked up about since it can sometimes be so hard to detect. If I have any additional updates I will be sure to post.