Do I have herpes? So confused...

[riverstyx]

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 :)

 

[riverstyx]

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.

[whitedaisies]

Good luck! I am waiting for results as well....negative at 10 weeks, now its 5.5 months post exposure...hoping its positive so I can move on already and I can get the proper treatment.

 

In your case, of course, I hope its negative! Keep us posted! :)

[riverstyx]

@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.

[WCSDancer2010]

Thanks for the info, esp about going through Terri Warren to get the test done ...that will help us in future to let people in your situation get a faster result :)

 

Good luck :)

[riverstyx]

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!

[WCSDancer2010]

That's good to know ... I'll be interested to hear the results of the Western Blot

[riverstyx]

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.

[whitedaisies]

Well that's great news.

 

I really dot think u need to discuss indeterminate unless she asks to see ur papers. U had the test, professionals have said u don't have it. But whatever makes u feel comfortable is important.

 

Glad u can put this to rest. An glad u have a new respect for stds and will get tested before sexual activity.

 

Congrats and all the best

[WCSDancer2010]

Glad to hear that ... and glad you finally have an answer. And interesting to know the details about the indeterminate result.... I'm always interested in hearing how the test results are interpreted.

 

And yes, this experience gives you good reason to have the STD talk and to get tested with any future partner ;)

 

(((HUGS)))

[riverstyx]

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...

[WCSDancer2010]

Glad it helped ... and glad you are communicating better. See, as they say, "Every cloud has a silver lining"

 

(((HUGS)))

[riverstyx]

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.

[WCSDancer2010]

It's very simple:

 

"Before we get intimate I want to talk to you about something. Back in 2014 I had a scare when I went for my regular STD testing. I had an inconclusive result for Herpes. I've never had any symptoms but I learned that sometimes Herpes doesn't have symptoms. I went through 5 months of not knowing if I had Herpes or not, until I finally found a highly sensitive test that came back indeterminate, which I was told by the specialists means I likely have some protein in my system that is setting the test off, and that I don't actually have Herpes. I resolved then that before I have sex with anyone, I would want us to both go get tested for all STD's so that neither of us will ever have to go what I went through. It's nothing personal, and really, it's the responsible thing to do if we care about each other."

 

That says everything you need to say. Odds are she will ask a few questions. She may want to know who the experts are, and your answer "University of Washington Virology Research Lab experts." would not only be appropriate, it should let her know that you have done everything you can to be educated and tested to be sure of your status.

 

K.I.S.S. ... Keep It Short and Simple is the best thing you can do.

[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.

[whitedaisies]

Ok please don't ever feel bad!!!

 

You have been through a very difficult ordeal with lots of confusion and emotions...nobody understands that more than me!!! I will spare u my story for now....u can read my prior posts.

Give urself time....ur world was turned upside down. U lost confidence in the medical system, the tests, now that u r negative u don't want to go thru it again. I totally get it.

 

My suggestion would be to seek counselling to help u move thru it. I am doing that and it's helping. Still have my bad days.

 

You WILL get thru this. It's hard to let go of all those emotions just bc a test came back negative....emotions linger. Baby steps to resolve them.

 

Hugs

[riverstyx]

Hi whitedaisies!!

 

Yes I have read many of your posts. First off I want to say you are definitely NOT an outcast, don't believe that bullshit for one minute or let others make you feel like that, educate them if you have to about the means of transmission and tell them the truth. If they still act weird after that, well, then that shows you what they are like.

 

Yes, I am in therapy, and it is helping somewhat. Although over the past 3 months my sessions have gone to a pretty dark place. Nonetheless, they are a constructive and useful outlet for me to vent my feelings.

 

I've been talking to a couple of lawyers about suing Focus Technologies for willfully ignoring the pleas from the medical community to update the guidelines for interpreting their test (I was a low-positive at first), and while the lawyers say I have a case, I am thinking maybe that would be more of a hindrance than a help? It would prolong the anger around H and further inhibit me from moving on with my life. I don't know.

[whitedaisies]

Thank u for ur support. It's weird, I always am there to support others....never ever got the support I needed before....even thought I was not worthy of it....until now....until all u people have given me unconditional support and U don't even know who I am. I do still struggle with reaching out and realizing that I desere as much as I give.

 

Therapy will help...give it time....come on here and post as u wish....I would say my advice has been to find sthng artistic to do. Herpes make sour head spin at times w so many thoughts and fears....we need to balance that with art...writing, painting,drawing,photography. I find most days it really helps me and then some days I can't do it bc I am too raw with emotion. Some of my posts embarrassingly enuff have had quite a few emotions. Ugh. But if u can't do it here, u can't do it anywhere. Lol

 

Be patient and empathetic w urself. U will get there.

 

Hugs

[riverstyx]

@whitedaisies

 

Yes, music is my biggest comfort now. I listen to it *all the time*. When I'm home, I listen for hours and hours. When I'm driving, I have my ipod on. Even at work I listen to my ipod, and my boss is just across the hall! I don't care though, I need it right now. I play the piano too, and that has been a *big* help. I improvise a lot, and that helps to express my feelings in a constructive way.

 

I know what you mean about posting. Now that I'm trying to put this behind me I'm more than a little embarrassed that I've posted the details of my personal history. I'm a *very* private person. But here they are, for all to see.. Oh well, it was necessary at the time, and it helped me come to some important answers about where I stand. But everyone here was very kind and empathetic and non-judgmental, and I'll always be grateful for that.

[WCSDancer2010]

@riverstyx

 

Hey again!

 

First - don't worry about taking up our time - that's what we are here for!

 

Are you on any medication for Depression? I'm an anti-meds person but I went on Welbutrin for 6 months when I was in a particularly difficult part of my life. If you are not, you may want to go to someone who can prescribe something and you can initially try it for 6 months and if you think you got your life back on track, then you can see if you can wean off. I know for *me* it helped me to be able to breathe and clear my head. And if you *are* on meds, well, maybe you need to look at whether they are the right ones for you. You sound clinically depressed and it doesn't sound like what you you are doing is pulling you out of the fog.....

 

(((HUGS)))

[riverstyx]

@WCSDancer2010

 

Ugh, depression?! Really?

 

I'm not on any medications for depression or anything else. BUT if it would be a help, maybe that is something I should look into, although I'm not really interested in being on any meds long-term, I just don't want to become dependent on them.

 

I've always had a therapist, and she is helpful. I just feel like all these issues surrounding my H saga have been quite harmful, and I feel like I'm not able to discuss any other issues with my therapist but those surrounding my H scare. So I definitely want to move on from that and talk about things that are more central to my life and my own psychology.

 

So I guess I will talk to my therapist and ask her if she knows anybody that can evaluate me and prescribe some meds, if necessary? We'll see how it goes. I imagine that will be helpful in getting me out of this funk.

 

 

[WCSDancer2010]

Sometimes we have what I call a "situational depression" - when something in life throws us more curve balls than we can deal with at once. That was what happened to me. I didn't feel I could take another hit ... my mother had a stroke and took 8 yrs to die, pulling my father's health down as he nursed her for most of that while she became more and more feeble, my fathers nervous breakdown afterwards, my ex-husband's mental illness (severe depression for a year), a teenage daughter whose behaviors were cause for a lot of concern and stress, divorce, and a BF dumping me when I was at my lowest point. 6 months of the anti-depressants helped a lot. Helped me to breathe again so I could focus on looking forward.

 

Winter is coming as well, and that is tough for those with depression. You said you are sleeping 11-12 hrs/day and you "can't see to the daily tasks and responsibilities of living".That is the classic signs of depression. So talk to a Dr and consider chemical intervention, even if it's just to get you through the winter.

 

(((HUGS)))

[whitedaisies]

That's what exactly happened to me. The trial of the diagnosis led me to depression and I am on Meds. See a psychiatrist once per month for Meds and therapist twice per week. The Meds help still my mind so it doesn't go in overdrive. I am a thinker by nature so the stress and unclear diagnosis was enuff to send me spinning on top of all the other issues I had to deal with.

 

I strongly recommend it for u. I really think it will help. I am on a very low dose an I plan to get off within the year as thins settle down.

 

Good luck

[riverstyx]

@WCSDancer2010, @whitedaisies

 

Thanks guys, I appreciate the help, and thanks for letting me know I'm welcome to post on here. I'll admit, I am/was a little worried that Adrial is/was going to give me the ax.

 

I think I will put all my reservations about taking medication aside and just do it. This semester coming up is *the* most important semester of my life. I am finishing my Master's degree, and I will be applying for my Phd. Not only do my grades have to be spectacular, but I need recommendations from two professors whose classes I'm taking. To be competitive at the best schools, you really need truly exceptional, almost unique, recommendations. I specifically chose these two because they can and will write such recommendations for qualified candidates--but you have to do stellar work in their classes and really stand out in a way that they've not seen much before. Now, that would take an awful lot of work if things were all going fine, but now, it's going to take a Herculean effort. I have no margin for error. So I have literally about one more WEEK to get it together before classes start. Then, I want things to be nice and quiet and calm for the next four months while I concentrate on my schoolwork. Academia is my life, and I want my degree and I want to be sure I will be in the best program I can get into next year. If I "mess up" this time around, there's no going back to correct it. I've already lost the summer to this bullshit, and I definitely don't want to lose the autumn as well.

 

Alright, well, now I'm off for dinner and drinks. Hopefully that will grease the rails a little bit :)

[whitedaisies]

Goodness....so muh pressure. Go easy on urself.

 

Meds take a bit of time to work so get goin if that's what u decide