riverstyx

Listen, I'm sorry to post on this thread. I know it should be done with and I should probably get out of here to make room for other people. I wanted to say two things, one of them important (to me). I got the HerpeSelect Immunoblot, and it came back negative. At long last, I got the negative result I was so desperately looking for. But that really doesn't matter so much now. Why? I feel that I should take my doctors' advice and move on, but the truth is, uh, that I'm kind of stuck and I haven't been able to get on with my life. No, I'm not thinking much about herpes anymore, and to be honest I think the real issue even when the truth about whether I had it or not could've still gone either way, was not *whether* I had H, but what having H would mean for me, my life, and my sense of safety and security in the world. And *that's* what I'm not dealing so well with. My family thinks I'm in big trouble, and maybe they're right. I sleep 11-12 hours per day. I can't see to the daily tasks and responsibilities of living. Some people on here have spoken so eloquently of their struggles and how they've coming out shining on the other end. But I don't know where to go from here. And I feel bad cause I don't want to take up anybody's time.

Hello everyone! I went through a terrible scare this summer. For almost three months I thought I had genital HSV-2. It turns out that my tests were false-positives, and that I don't have it after all. But I'd be lying if I said I've been able to move on with my life. The truth is, I'm a mess. So I'm looking for someone in my area that could stand to talk to me. I am a male, looking for preferably a female, only because the women on this site have been incredibly empathetic and understanding. I am in Northern New Jersey. I would prefer to talk to someone either in my state, or in New York City or not too far. I'm looking for support. I feel like I have felt every emotions surrounding this thing, all compressed into one summer. I feel that I can relate to what people are saying on this site, and I want to help, too. I am an empathetic person and a good listener, and I will help in the ways that I can. Moreover, I have done an enormous amount of research on herpes over the summer. And by research, I don't mean I typed in a bunch of searches into Google every day. I mean I read all the medical literature, medical dictionary in hand, and I read the latest research coming out of the University of Washington, which is probably the foremost herpes research center in the country. I also spoke to many of their experts when I had questions. I'm here to help.

Look I'll be honest, I've been thinking about this since I spoke with the University of Washington Virology Research Lab experts. I'm very, very, glad that I can put this all behind me, and that they took my indeterminate result to mean I most definitely don't have H, and that a protein in my blood is triggering a very partial reaction on the test, BUT this whole episode, lasting as it has 2 1/2 months, has left me paranoid about all types of health conditions. I know I have nothing to disclose to any future partners, BUT since I will forevermore insist that we both get tested for all STDs before becoming intimate, I will have to find a way to explain to her in a way that she understands and accepts that I do not have H. What I mean is, I need to find a way to explain this in a conversation that does not last an hour, and which does not get into all of the technical details of all the research I did since May. I just don't know how to say it succinctly, and in my experience, the more you have to labor to explain something that should be short, simple, and straightforward, the less likely people are to actually believe it, even though the bottom line is the same. There was good evidence that I didn't have H before this, but I was REALLY hoping for a clear "negative" on the Western Blot, not because an indeterminate would make me question whether I was negative--it hasn't--but because an indeterminate just makes it a lot harder and more inconvenient to convince someone that yes, Sally, I DO NOT have H!, for chrissake. I mean, I see there are a lot of women on this site...I more than welcome your opinions on what you would think would work best, things to say, things to avoid saying, etc.

Dancer, thank you for your kind words, and thank you so much for your support throughout all of this. I printed out that letter you wrote to my parents and I read it to them--twice. They became quite reflective over it and it allowed us to communicate much better. If only the way that the empathic and compassionate people I have found on this site could be the way everyone is in the world...

OK, so, I got the results back from my Western Blot today. It was Indeterminate. I was a little surprised by that, I thought it would be a definite positive or negative. But I spoke with a couple of experts at the University of Washington Virology Research Clinic, and here is what they said: an "indeterminate" on a Western Blot can occur for two reasons. One, the person got tested too soon after an exposure to herpes, while the body is still in the process of forming antibodies, and while antibodies are still rising to detectable levels. Two, the person well and truly does not have herpes, but a protein on the surface of some other viral antibody, or even on the surface of the body's own cells, is causing one of the proteins on the test to react a little. They said that since my last genital-to-genital and oral-to-genital contact was 10 years ago, option 1 is absolutely out of the question. HSV-2 antibodies take at most 6 months to develop, and at 10 years, or 120 months, I can rest assured that if my body was going to develop them, it would have by now. So they said by far the most likely option is the second one: that I do not have HSV-2, and that I have never had HSV-2. They said indeterminate results do happen and they are not uncommon with low-positives, like the ones I had on my IGG antibody tests two months ago. They also said that far and away the second explanation fits well with all of the other circumstances and considerations of my case: I have never had any symptoms, my only sexual partner ever has never had any symptoms, and she has also tested negative for HSV-1 and HSV-2. They also said that there is little to be accomplished in waiting another 12-16 weeks to retest for a different result, because nothing will change, and, assuming I do not acquire HSV-2 from a future partner, I will likely test indeterminate on the Western Blot for the rest of my life. They said I can safely put this whole episode behind me, and that there is absolutely nothing I have to tell future partners, because I don't have either HSV-1 or HSV-2. I will talk about it with any future partners, however, because it is my wish from now on to be tested for STDs--and for any future partner to be tested with me--before I become intimate with someone new. So if that is my intended course, it would only be fair to let them know that my indeterminate result strongly, strongly suggests I do not have genital herpes.

So some good news today, I finally heard back from my ex-girlfriend. She went to her gynecologist, and got tested for a bunch of different things, and she specifically requested a blood test for herpes types 1 and 2. And they came back...negative! My ex said the tests were conclusively negative, and said that even before the tests, her gynecologist had said she would be shocked if the tests had come back positive, because like me, she had never had any symptoms whatsoever, and it has been 10 years since we have been together. So, since she was the only person I ever had genital-to-genital contact with, and the only person that ever gave me oral, this means that I cannot have genital herpes! Now all I have to do is wait for the results of the Western Blot, but I would say this is a pretty big piece of circumstantial evidence that has fallen into place!

@whitedaisies Thank you! I am hoping for the best, while preparing for anything that can happen. I think negative at 10 weeks is a very encouraging sign! I think you're in good shape so far! I haven't had any symptoms ever in 10 years so that's the one thing I have going for me. But we'll see what happens! Hopefully it will only be another couple of weeks till I have my final results.

So update on this front some not so good news and some neutral/mildly good news. The unfortunate news is that since speaking to my ex about the situation I'm in she had told me that she had an appointment scheduled with her gynecologist on June 9th. I was going about my life and on June 9th I texted her asking how things were going and how her appointment went. I never heard from her after that, either that day or in the days that followed. So I'm convinced that either she didn't really go to the gyno, or doesn't want to get involved/get tested, and just doesn't want to be bothered with the whole situation. So if I don't hear from her by tomorrow, which I definitely think I won't, then I will likely never hear from her again, at least not at all about this issue. So that piece of the puzzle is going to have to remain missing. Maybe she figured she has never had any symptoms, as she didn't when we were together, and so it wasn't necessary to get tested. Maybe she was afraid the test would be positive, and she just didn't want to open the whole can of worms and deal with what would happen next if that turned out to be so. Who knows. It's useless to speculate. The other news is that while I was striking out trying to get a single laboratory or hospital to draw my blood for me and give it back so I could send it out for the Western Blot to the University of Washington, I did find out that I can become a phone patient of Terri Warren's at the Westover Heights Clinic, and that her organization can order the test for me through Quest Labs. Apparently after she protested some years back they agreed to let her continue ordering out the test through them, and that's something I can start to work on tomorrow. I've been feeling down about this whole situation and I question the point of even having the Western Blot done. Yeah my two positive tests so far were low-positives, but so what? Who cares? i've been looking up things on the internet for the past 3-4 weeks all the time (though much, much less these days) trying to find reasons for hope. I'm honestly just so TIRED of it all. Tired of thinking about H, tired of the what ifs, should haves, could haves, and all that. I guess I should send out the Western Blot, I mean, the worst thing that could happen is that it comes back positive, something I'm already well-prepared for. No, actually, the worst thing that could happen is it comes back "Indeterminate." That will REALLY drive me crazy. But I think the chances of that happening are basically zero. In the unlikely even that it comes back negative, well, let's just say I'll be planning one heck of a celebration that night.

Thanks everyone *so much* for your help and support! Reading the comments on here has made me feel so much better. I had a big argument with my family about all of this earlier, and I had to leave the house and am staying at a friend's for the next couple of days. We were talking about exactly the things mentioned in this thread...about a normal mourning/grieving period....I even used those exact same words earlier...but my mother was having none of it. Then when my brother came into the room, he said that what I had put my parents through over the last three weeks was an "absolute disgrace." Then I REALLY got angry, and that's when the tempers flew. But Dancer that letter was amazing!! I am going to send it to my mother, and hopefully it will give her some perspective.

OK, so I could really use some help here. I've been on the fence about whether I have H or not, but it seems to be coming to a conclusion soon. I will send out the Western Blot tomorrow, and my ex-girlfriend is getting tested tomorrow. I have a sinking feeling it will come back positive. But anyway, that is not what I want to talk about. It's my reaction to this whole thing, and it seems to be causing a lot of people in my family trouble, particularly my parents. It's been three weeks since this started with a positive blood test, which I took just because I was curious about my status. I was naturally terrified the first three weeks, and I have been looking up everything I can find on the internet trying to find answers, and trying to talk to people who will help me understand what is going on. Now, I just finished school for the year, and I am on summer break. I am looking to get a job, and applying online usually doesn't take a long time, I can apply to like 25-30 jobs in like an hour. But when I'm not doing that, or eating, or sleeping, I've been glued to the computer trying to get a resolution to this thing, or at least to try to find a reason why my two positive blood tests might not be true positives. I spoke to my primary care doctor, and I spoke to a therapist, but their expertise is not in this area so what they can tell me is pretty limited. I guess a lot of what I'm feeling right now can be pretty accurately described as complete denial. Denial since I've had only one sexual partner, and denial that this could happen to me, feeling angry at my previous partner, resentful at the perceived unfairness, basically things like that. My family is sounding the alarm bells because they feel this near-constant preoccupation with this matter is completely abnormal, and that there must be something wrong with me. I live with my parents, by the way, and I did tell them about this matter. They are older, 73 and 74, and since I'm in the house they've witnessed my day-to-day ups and downs. I've had several conversations with them about this, but I think they're reaching the end of what they can tolerate. I've been encouraged at times, more often depressed and mournful at times, and I've reached out to them and my brothers. My brothers seem to tolerate it better than my parents. My parents constant theme has been how I am letting my life stop in the face of this, and that people "bounce back" in the face of adversity and difficulty. I told them it is natural for people to go through a period of mourning and anger and other negative feelings in the face of something like this, and they have continually asked "but how long? Three weeks is a long time." So naturally I don't know what to think. Is it me? Is it them? If I'm doing something wrong, what is it?

Actually I could contact UW tomorrow because the lady I spoke with today said their lab is open "24 hours a day, 7 days a week." So I'll do that first thing in the morning. I was going to wait a little while until they had time to get in for the day, and because of the 3-hour time difference between where I am and where they are, but if they're in all the time, I'll just call straight away :)

So I had some trouble trying to send the Western Blot out. While I got the requisition form just fine, I couldn't get any laboratory to draw my blood, spin it, and give the serum back to me. It really was frustrating. I didn't bother with Quest or Labcorp as I know they would never do that (and I confirmed that with both), but I also called a bunch of smaller, independent labs and they all said the same thing: no way, we don't draw blood for outside laboratories. Someone was nice enough to talk about it with me and said that my best bet would be to try some different hospitals that are nearby, that one of them would most likely be willing to do it for me. It was later in the day so I didn't get outpatient services at any of the other hospitals. But is that true? That hospitals are the ones most likely to help me out? I don't want to drive around tomorrow for nothing....

But to be honest, part of what was fueling the denial was that some pretty knowledgeable people around me didn't believe, and still don't believe, that I have it. So I was working against that all the time. My shrink doesn't believe I have it, and she keeps saying "I have no reason to think you have this." My DOCTOR doesn't think I have it, and I spoke to him twice. He told me to "forget about" the two positive tests and to "discard" them. My family doesn't think I have it, or at least, my parents don't think so. So, that had been giving me some false hope for a while, and plus things I looked up on the internet had helped some, but I now know that basically anything you want to find on the internet, you can, meaning that if you want to read something positive about your chances, then you can find something positive. If you want to read something negative, there will be negative things on the internet too. So you can't really count on it.

And like I said, the only hope is that my ex does not test positive for it. But the chance that she will test negative is basically zero. If she does test negative, then this is really something.

I mean, think about it: I've been deluding myself this whole time into thinking that, while I have hsv-2, I have it orally, not genitally. Now, just how likely is that? -Astonishingly *unlikely*. There is only one person I possibly could've gotten it from, and yes, she and I did everything but sleep together, but still, she never slept with anybody before, so the chances that she had it genitally are next to zero. That leaves kissing. I hear oral hsv-2 sheds around 1% of all days, which means that the chances that I received oral hsv-2 from her from kissing are likewise next to zero. *By far* the most plausible explanation is that I got normal hsv-2 from normal sexual contact. That's it. That's the end of the story.

Actually ,I think this whole thing will come to a resolution sometime soon. Like I said, my ex is getting tested, and that should shed some light on things. I'm sending out the Western Blot tomorrow after I get the blood and physician requisition form, and that will be back in about 2-3 weeks, so that will definitely tell me whether I have it. And as much as I hate to admit it, if my ex tests positive, then that most likely means I have it genitally. I mean, yeah, it's possible that she got it after she was with me, but if the Western Blot tests positive and she comes back positive too, it just seems like two big pieces of the puzzle will have fallen into place. If she comes back negative, then I have something of a mystery on my hands. But ultimately, it is pretty likely that she will come back positive.

And part of the reason this is so depressing is NOT KNOWING. I've become so accustomed to being able to find out anything I want by just typing a search into Google, that I'm just not equipped to deal with chronic, long-lasting uncertainty. I simply cannot believe---cannot believe---that in the absence of an actual outbreak, that there is not other means of bringing this to a definitive resolution.

My ex texted me the other day, and said she has an appointment to see her ob/gyn on June 9th. I have a sinking feeling the results are going to come back positive, but like I said in earlier posts, this may not be the end of the story, since if her test does come back positive, this could mean that she contracted hsv-2 from one of the many partners she had with whom she didn't practice safe sex after me, even if she would've tested negative when she and I were together. Who knows. It's all just so depressing. I wish I had never gotten a blood test in the first place. I wish I had read the Centers for Disease Control guidelines that recommend squarely against blood testing for herpes in the absence of symptoms. I spoke to my doctor, and he said that, regardless of what my ex's herpes test says, I will most likely have to get used to living with the uncertainty surrounding my diagnosis, unless and until I have an outbreak genitally, or somewhere else on my body, that can be swabbed for a viral culture, or tested by PCR. But, he said, since I haven't had any noticeable outbreak in the 10 YEARS since we were last together, and since I pay very close attention to my health (my family thinks I'm a hypochondriac), it is unlikely that I will have an outbreak anywhere on my body, anytime in the near-term future, or maybe even the long-term future as well. Is it a possibility that I have genital herpes? Yes, he said, and it will always be a possibility. Is it a possibility that I have herpes simplex, type 2 somewhere else on my body? Yes, that is also possible. We just don't know, and will likely never know.

ThisIsMeNow Excuse me, but I am not "placing blame." I am simply stating what happens to be established fact: the more partners you have, the more likely it is that you will test positive for herpes. ALL statistics on herpes acquisition demonstrate this. Yes, hsv can infect someone who has only had one partner, but people with genital herpes who've had only had one partner represent less than 2% of all cases of genital herpes. As the number of partners goes up, so too does the risk of acquiring genital herpes. This is basic, clear, unalterable fact. So no, someone who has had sex with one partner does not have the same risk as someone who has had 100 partners. If you would have read my post more carefully, you would have noticed that I am not "laying this at the feet" of my ex-girlfriend. I am simply saying that, since she has been with other men since the time we were together, it is entirely possible that she will now test positive for hsv, even if she was negative at the time she and I were together: something which reflects basic scientific fact.

WCSDancer2010: I am definitely sending the Western Blot out shortly. I spoke to my ex and she said she has an appointment with her obgyn on June 9th. Personally, I don't think her test results will mean much, or allow me to resolve this, even if they do come back positive. She and I dated a long time ago, and she has....how should I say this....she has been in circulation with other partners for quite a while. So it is definitely possible she didn't have the virus while we were dating, but later ended up with the virus from one of her many other partners since we broke up. Although if she ever had any kind of symptoms "down there," she would've gotten tested for sure. I know that about her. But the fact that she has never had symptoms to speak of, plus the fact that women generally have symptoms more often and more severely than men, makes me think that she just might come up negative. In which case, I have a real mystery on my hands.

@WCSDancer2010 Yes, I contacted the University of Washington Department of Virology. They sent me a kit for the collection of a blood specimen that can be shipped to them overnight. They will perform the Western Blot on the blood sample. So I will definitely be sending it out soon. I did contact my previous partner, and I told her about the positive tests, and frankly, she was shocked. She says she has always been "careful," and that, since she has an IUD, she regularly goes to her gynecologist for checkups. Whether those checkups include regular screening for genital herpes, is anyone's guess. I do know that standard STD panels do not usually screen for herpes unless you specifically ask for that test to be included. But I personally don't think it would be likely that she would've asked for herpes specifically or known that herpes tests are not typically included, since most people generally don't know this information. But from the conversation I had with her, it seemed to me like she would make an appointment with her gynecologist to get checked, so hopefully when she does, that will shed some light on this.

I see your point about disclosing an oral infection with hsv-2 to any future potential partners. To be honest, I hadn't thought of the possibility of it passing to them. My doctors think it might be oral herpes mostly because of the stuff I was saying in my earlier posts, and on the basis of that they just don't think I have hsv2 in the genital region. But they have two lab reports saying that antibodies to hsv2 are in my blood, and so they need to make sense of those reports (although one of the doctors said of getting a second lab test done, that "more is not better"). Since an antibody test doesn't tell you *where* you have hsv2, only that you have it *somewhere*, they figured the next logical place for it to be located is in the mouth region. But I guess it's possible I could have it anywhere, although if you ask me, that would be pretty weird. Personally, I know that I had the shingles a few years back (was diagnosed by my doctor), which means I had the chicken pox when I was younger, and so I'm wondering if the antibodies to the chicken pox, increased to fight my shingles, might be throwing the tests off. I think it's a long shot. Right, the ideal would be for them to take a swab of an open blister on my mouth to diagnose hsv2 orally, and they feel the same about diagnosing hsv2 genitally: the best would be to take a swab of a sore or blister in my genital region, but since I've no outbreaks, or at least, none that I could ever discern, they don't really have that option. So I'm kind of stuck in this no man's land between hsv2 oral and hsv2 genital. But yeah, now that I think about it, they really shouldn't just default to the explanation of the antibody tests as "oh well, that's just hsv2 orally." Seems kind of sloppy. Either way, I know I wouldn't want to give this to any future partner, no matter where it is located, and no matter how small the risk, so I think disclosing is the best thing. Plus, I'll feel better about doing it. Starting off a relationship by lying isn't really the way to go.

Ok, so hsv-2, whether it occurs on the lips or on the genitals, is the same hsv-2. So my two different doctors don't think I have hsv-2 on my genital region. They think I have it on my lips only.

Thanks for the comments, I appreciate them. The only thing I am saying is that I might have oral hsv-2 *instead of* genital hsv-2. So that was the issue: I was confused about which one I had. If I have "just" oral hsv-2, I think that is something I can deal with. Genital hsv-2 just seems so unlikely at this point.

Ok, so out of pure curiosity about my status I recently got a herpes blood antibody test, and to my shock, the result came back positive for herpes simplex, type 2 (negative for herpes simplex type 1). The test was a HerpeSelect ELISA, and I had a low-positive value (2.6), and anything below 3.5 is notoriously prone to error. Plus, the test came out equivocal, or indeterminate, the first time they ran it. Only when they ran it again a minute later did it come out in the low-positive range. The result was subsequently confirmed in a new test I had a few days later, although the lab report did not mention what type of antibody test was performed, or whether my test was definitively positive, or merely in the low-positive range again. I spoke to a couple of national experts on herpes. I told them that I have had only one sexual partner, and that was almost 10 years ago. I have "fooled around" with a couple of other women, but we never had sex. I told him that in 10 years, and indeed for my whole life, I have never had symptoms of genital herpes. I told him that I am very conscientious about my health, and even minor symptoms I would've noticed, and probably gone to the doctor to get them diagnosed, but that I have truly not had any symptoms. This one expert said there is a lot of false information on the internet, especially some stating that "most people" never get any symptoms. He said it is not true that "most people" never get symptoms. Most people DO get symptoms, only they never connect them to a possible diagnosis of genital herpes at the time of their occurrence. Plus, after being told they have genital herpes, most people are able to recall symptoms and incidents that may have been manifestations of this condition. The only symptom I ever had was burning urination, once, several years ago, and that cleared up immediately after I started antibiotics. Plus, the doctor had done a genital exam at the time, and everything was normal. He said that my lack of symptoms was clinically significant, and should factor into any opinion on whether I had genital herpes, or didn't have it, especially since a standalone blood test is hardly the preferred method of diagnosing this condition. I also spoke to my primary care doctor, and he said he didn't think I have genital herpes. He stated that more men than women manifest symptoms, because when women have breakouts, the blisters and lesions can sometimes "hide" in the vagina, on the cervix, etc. He said that since I only had one sexual partner, ever, that I am extremely low-risk for this condition. Yes, she had had more partners than me at the time we were dating, but then again, she and I had only dated on and off for about a year. All in all we had sex probably less than 40-50 times. Nonetheless, I still can't shake the feeling that I might have genital herpes. Yes, I have never had symptoms. Yes, I have only had one partner. But I have two positive tests. What I personally think, is that I have oral hsv-2. That would make the most sense, and even though oral hsv-2 is rare, having that diagnosis can more easily be reconciled with the other problems concerning a genital herpes diagnosis. I know that maybe 2% of all hsv-2 cases are oral, but if you consider that my odds of getting genital herpes from this girl were roughly 2%, especially since we never had regular sex for the year or so we were dating, i think the case I am trying to make is more than reasonable. Do you think I have genital herpes, or oral herpes type 2? Do I have to disclose any of this to any future partners? What would I say? It seems unfair and presumptuous to say "I have genital herpes," especially when the doctors are truly on the fence about that diagnosis. But I don't know what to say that would do justice to the predicament I am in.