Seriously confused

[riverstyx]

Hi everyone, I haven't been in in a while but now am back and could really use some help. Long story short: in July of 2014 I got the western blot after getting two false positives for hsv 2. They were low positives. My western blot came back indeterminate with only one protein out of 14 being reactive. This was 15 Months after my last encounter with a woman who was a virgin. Three months later, I got a herpeselect immunoblot which also came back negative. Fast forward to this year, one year later, and I got another herpeselect immunoblot, which came back positive. I couldn't believe it since I haven't been with anyone since my last herpes test over a year ago. At the time of my last negative herpes test, it had been 18 MONTHS since I had been with the Virgin, whom I didn't even have sex with. What is going on here??? I specifically chose the immunoblot because it tests for two hsv 2 proteins, and not just one. This means that now two hsv 2 proteins would have to be cross reactive, and not just one. How likely is that??? I will definitely get the western blot to see what is going on. But I am literally --literally ---going to have a nervous breakdown if I can't figure out what is going on here....

[riverstyx]

Also, I've been having tingling often in my groin. It seems to come on five minutes after I physically exert myself and stays for days. What is that about??? No other symptoms.

[fitgirl]

@riverstyx I am not the test expert here but it sounds like you may have herpes and it took time to show up as positive.that said...... get the western blot again to be certain. The tingling may be a symptom of herpes but the western blot will hopefully clear up the confusion. Speaking of confusion, remind me why you had the herpes test done in the first place if you have no symptoms or OB and you didn't even have sex with a virgin?

[riverstyx]

@fitgirl

 

Hi, nice to hear from you again. Basically I got a herpes test in May of 2014 because I read a few statistics about it that I didn't like--namely that people can have it and not know it (it can be asymptomatic), and that doctors don't normally test for it. I got scared.

 

I got the Western Blot after two false (low) positives. At the time of the Western Blot, it had been 10 YEARS since my last sexual partner (I know), and 15 MONTHS since I was "with" the virgin, so herpes type 2 antibodies would've definitely have had enough time to form. Another 3 months after I got the Western Blot indeterminate (1 protein of 14 reactive), I got the HerpeSelect immunoblot, which came back negative. That was 18 MONTHS after the last contact with the virgin (no sex, remember). Surely 18 months is enough time for hsv-2 antibodies to show up from a virgin?

 

So this all raises the question: if now, 26 months after my last girlfriend, I have herpes type 2, where did I get it from? How did I acquire it? I have not even kissed another girl since I was "with" the virgin. But then again, another question is, if I DON'T actually have herpes type 2, why did my latest test come back positive---a test that looks for two viral proteins, and not just one? Could I really be cross-reactive with two proteins like that?

 

Literally, this all makes no sense to me. I don't know what to believe.

[fitgirl]

@riverstyx hopefully legit will chime in.... dancer is not as available for a bit but they are more knowledgeable on the testing stuff. Your situation is certainly very odd. And wow...10 years man!!! You gotta get out more ;) . Your symptoms may just be paranoia. When you said you were "with: a virgin, what does that mean? If you tested positive for hsv1 this could make some sense but 2 doesn't add up based on your story. I wish I had more insight for you! Hopefully someone els might have an explanation

[riverstyx]

@fitgirl

 

Yes I certainly DO need to get out more!!!!! lol. No, I have always been negative for HSV-1. Those at least have always been negative. My symptoms---the genital tingling---*may* be paranoia---I do have severe anxiety which I am on medication for, and I do cause a substantial amount of stress for myself--of my own making, of course.

 

When I say I was "with" a virgin, I mean we engaged in heavy petting, that's it. Nothing else. And she was very very strict about not having sex. She was also pretty emotionally immature. When we discussed stds, she said she would "die" if she ever caught anything, and she said she never had anything from anybody. Typical foolish thinking.

[fitgirl]

@riverstyx well then you could not have been exposed by her! Ha....she would "die" hmmmm if we could all go back to ignorance is bliss life would be so much simpler wouldn't it? There is a good chance you don't have herpes and if not for these tests you would have had one less thing to street about ; ) . Keep us posted on what discover with the next test and hopefully you will get to the bottom of this. It is silly to worry if you have no reason to!!!

[riverstyx]

I spoke to Terri Warren and Anna Wald and both said they strongly believe I don't have herpes, and that I should stop testing and put this to rest. They said the Western Blot indeterminate with only one protein reactive at 15 months after my last non-sex encounter is definitive and that there is no use to getting tested again. Anna Wald said if I got the Western Blot again it would most likely come back indeterminate again, in which case I would know I am negative. I will get the Western Blot one more time, and that will be the end of all herpes testing for me!

[fitgirl]

@riverstyx That's good advice! Now you can move on and get out there more man! ;)

[2Legit2Quit]

It does not sound like herpes to me. Paresthesia can happen anywhere below the waist if certain nerves are being pinched around your lumber spine. I think you're way over thinking this and letting anxiety rule the roost. Let it go and get in w your life and enjoy. It, there is only one life to live.

[riverstyx]

@2Legit2Quit

So you don't think I have it? I agree completely I am letting my anxiety get the better of me, as I usually do. I was just so shocked by the positive immunoblot this past week. Terri Warren said she "wasn't surprised" I'm having difficulty with testing given that I got a low-positive last year which was ruled out as positive by the indeterminate Western Blot (only one protein reactive). The whole thing as made me seriously physically and psychologically ill. Of course, I started school this week so I would love to sort this out ASAP.

[2Legit2Quit]

I think you need to do what I told you to do, w waiting four months from time of sleeping w this person and go in and ask specifically for HSV 2 IgG Elissa test only. Those results should be there decider and I doubt they'll be positive.

[WCSDancer2010]

I thought we had laid this to rest ... but I'm glad you called Westover Heights ... there are things that can cause "false positives" that cause a protein to "react" on the test... which is why the Western Blot is the Gold Standard.... because it looks for more proteins.... and "finding" just 1 or even 2 proteins doesn't mean you have it.

 

Your reaction is exactly why the CDC recommends against general testing,,,, because even with advice to accept the testing you still insist on looking for proof that you have it. Unfortunately Herpes testing is not a perfect science and there are a lot of things that can affect the test and cause a protein to show positive ... which is why the Western Blot is the best test ... because if you actually had H, most of those proteins would show positive. When only one or two show, it's deemed to be a cross contamination/reaction on the test.

 

And honey, if you were with a VIRGIN there's NO WAY she has HSV2 .... especially if she's always been really careful about play and petting!!!

 

I really suggest that you actually get some counseling about your obsession with this ... and I say that with love and respect. I have a friend who had obsessive issues around diseases and she did some serious work around it and has learned how to let go of that fear that gripped her when she got triggered around diseases. You sound like you are where she was years ago ... so some counseling may be useful for you to help you to let this go....

 

(((HUGS)))

[riverstyx]

@WCSDancer2010

 

Hi Dancer!!!! It's really nice to hear from you!!!

 

Yes, I definitely have a problem with anxiety, and like many people with anxiety, I tend to assume the worst-case scenario will inevitably happen. So for example, if a herpes test comes back positive 31 months later, I "must" have herpes, even though a Western Blot at 18 months and another test at 21 months came back negative. I know it's not rational, for sure, but the worry is just so corrosive over time. These little doubts start to creep in, and before you know it, you're going to the doctor for another test, "just to be sure."

 

My Western Blot at 18 months was indeterminate, and they told me that only one of the 14 proteins was reactive, the exact same protein that caused my early low-positive ELISA tests. I was just shocked that the HerpeSelect immunoblot could come back positive 31 months later, especially since it tests for two proteins. BUT I spoke with both Terri Warren and The Anna Wald herself, and they both said that the HerpeSelect immunoblot should NOT be used for confirmatory testing because it is based on the SAME PROTEIN as the ELISA. That's according to the Centers for Disease Control also. And Terri Warren said she was "not surprised" I was having trouble with the HerpeSelect immunoblot because the test has false-positive issues. She also said that her clinic stopped using the test entirely, because it is very, very difficult to read and interpret--very subjective, she said--and also, in MANY of her patients who were negative for BOTH HSV-1 AND HSV-2, the common protein band was reactive. So there's definitely cross-reactivity issues with that test as well. I was just worried since 10 months ago it was "negative," but now it's "positive"? Why? But I think Dr. Wald and Terri Warren are helping to put my concerns to rest. I will get the Western Blot but I personally don't think it's necessary.

[riverstyx]

OK, so I got my Western Blot results back, and they were exactly as expected, according to the experts: negative for HSV-1 and indeterminate for HSV-2. They said that given my indeterminate western blot last year, my negative herpeselect immunoblot months ago, and now my indeterminate western blot this year, all with no new sexual partners, that I should consider myself definitively negative and definitely stop testing for good and start thinking more positive thoughts about other things.

 

I just wanted to take a minute to say thank you to everyone on this site, this is a wonderful, wonderful resource for getting accurate and up-to-date information about herpes, and the support shown is wonderful. And for the last several weeks before getting my test results I really was at peace with whatever would've happened, as I realized there are many, many things in the world that are more significant than a diagnosis of herpes, and that people here have shown the positive qualities that are worth developing to become good people. I remain forever grateful for your help, and keep up the wonderful work done on this site,

 

Best,

Riverstyx

[2Legit2Quit]

@riverstyx that is great news! I hope now you can move on and put this all behind you. At least you got a great lesson from this all and are now more educated than even most GPs about this virus and you can spread that knowledge and even be support for someone who comes to you devastated by their diagnosis. Good luck to you my friend!

[WCSDancer2010]

@riverstyx

 

That is AWESOME news.... (and I just have to put in one little "I told you do!" .... LOL! ) Perhaps all this happened to help you to come here to get those realizations ... which is why I am on here nearly every day. H or no H, seeing people grow and become better versions of themselves is such a beautiful thing.

 

Good luck in all your future ventures! (((HUGS)))