My herpes diagnosis: May not be False Positive

[redroses]

Got my diagnosis the other day. Never had an OB (Hope that stands for outbreak; I'm new here and that seems to fit when I see it used by others) and it was found during a routine screening for STD's because my OBGYN offers it and said everyone should get it done if there's the slightest chance you may have been exposed. Of course it was a shock to me. Both my boyfriend and I were married for 30 years, but he's had several relationships since then and a one night stand. He's the first one I've been in a relationship with since my husband passed away.

 

So I researched it an luckily found this site. Then read that if you had numbers below 3.5 there's a chance of false positive, so I was planning on getting the blot test for confirmation. I was waiting for my boyfriend to get his results and if his was low too we planned on going together for the blot since we have to go out of state to get it.

 

Since that day, I've been paranoid to say the least, thinking and rethinking every little ailment I had and revisiting each episode for possible missed clues that I did have an OB but never knew it. Then I think, could that really be possible? But apparently from everything I've read symptoms can be so minor that they are missed or attributed to something else and some have no OBs at all. My OBGYN said if I never had an OB, it's unlikely I'd get one by now- thinking I might have gotten this years ago, but who knows?

 

Well, wouldn't you know it today I felt itchy and feel like I have blisters. I took a look see, but it was hard to tell, but I think I have blisters. Do I have an OB or am I paranoid? Def will see Dr as soon as I can get an appointment while I still feel this way.

 

My boyfriend and I broke up briefly in May-June and got back together in July. That would bring us to the 4 month mark. So, I asked him today if he slept with any of the women he met and dated a few times while we were not together. I told him it would not effect on our relationship- we've been together over a year- and have been through a lot together. He was there for me when I had breast cancer. I explained I just needed to know to make sense of all this and that I needed to put it to rest. I'm upset that I suspect I am having an OB. He said no, he did not sleep with anyone- had a few dates and only kissed- no oral sex or touching. Was kind of hoping he said yes, he did sleep with someone, as strange as that may sound because at least I'd have some answers. But now, I'm right back where I started with no answers- but except with a possible OB after maybe all these years. From what I read this does happen, but it just seems like too much of a coincidence to me.

 

I know they say stress can bring on OB, but in the past 5 years I went through 3 years of my husband's terminal illness being his caregiver, losing my job, having breast cancer, financial stress and trying to sell my house. If that didn't bring on an OB, I don't know what can. Except maybe the diagnosis?????

 

Guess I'll have answers after I go back to my OBGYN and let them have a look. For now, I can't tell you how upset I am. But I guess anyone on this site can relate to what I'm feeling now.

[WCSDancer2010]

Call your Dr 1st thing in the morning and ask to get in tomorrow - the best time to swab is the first 48 hrs or so... They seem pretty progressive so they should do their best to get you in.

 

Try not to overthink it... you have a man who loves you and is standing by you. And there is a great chance you are just itching from the whole paranoia ;)

 

You've had breast cancer... you've nursed your hubby through terminal illness. Herpes has nothing on that. Promise :)

 

(((HUGS)))

[redroses]

@WCSDancer2010 thanks; you always seem to know that right things to say. My Dr said something similar- she said you've made it thru cancer, this is nothing compared to that. Funny, even though I know this is not life threatening, I think I'm taking it worse than my cancer diagnosis. I will call first thing tomorrow.

[redroses]

Saw Dr yesterday and she saw nothing. She said I'm making myself paranoid now that I was diagnosed, but again said at this point if I've never had an OB it's unlikely that I will. My boyfriend was taking all this well until I thought I had an OB and then he went online to research it; then he was a little upset. But he came with me to the Dr. and she spoke with us and answered all his questions. He seems fine with all this again and was as affectionate as ever last night. He also said at this point he doesn't need to hear his test results; he's in it for the long haul and it won't change anything as far as our relationship goes. Now, we're just waiting for his results. If he has a low score, we'll both be retested with the blot test. Another week to go!

[riverstyx]

@redroses

 

Hi there.

 

I'm just curious, did you get the index value back from your test yet? Is there still some doubt about whether you have "h" or not?

 

I went through a similar situation during this past summer, and it consumed me for the entire summer. I just got another test about 2 weeks ago, and that put an end to my concerns, finally. But I learned a couple of things about herpes testing along the way, and I'm happy to share with you.

 

The HerpeSelect ELISA, which is one of the most widely used diagnostic tests for herpes, is extremely accurate *for index values over 3.5*. For index values *between* 1.1 and 3.5, *on average* 50% of results are false-positives. Finding out the index value is key. In conjunction with any relevant symptom history that you may know of, it will tell you (a) whether you have a low index value because you are seroconverting, or (b) whether you likely had a false-positive. In either case, a Western Blot would likely go a long way toward clearing up any lingering confusion.

 

Forgive me if the issue concerning your diagnosis is already settled; I just got the impression from reading that it was not.

[redroses]

@riverstyx you are so right. Mine was 2.8 and I did my own research and found out exactly what you stated. When I saw my Dr yesterday and told her this, she knew nothing about it or the western blot. She even asked me if it was a scam.

 

NY does not allow the test or blood to be shipped, so I have to go to New Jersey or Connecticut. We are waiting for my boyfriend's test results because if his are low too, we'll go together, order the test and make one trip.

 

In the meantime, one good thing came from yesterday's trip to the Dr. She said it's not unusual for people newly diagnosed to make themselves paranoid especially if they've never had symptoms and she spent time with both of us answering our questions. I also spoke with Westover Heights, they will be ordering the tests for us, and they pretty much said the same thing about paranoia. It really doesn't take much to set mine off as I'm a control freak to begin with.

 

Did you get the Western Blog to confirm your diagnosis?

[WCSDancer2010]

When I saw my Dr yesterday and told her this, she knew nothing about it or the western blot. She even asked me if it was a scam.

 

This is why I tell people to go to an OBGYN and not a regular Dr... SMH

 

One day you guys will hear from me that I'm in jail for going postal on an ignorant Dr :p

 

Send her this info for me will you .... print it out and give it to her better yet.

 

Actually, I think I sent you a link for a NYT article by Dr Peter Leone??? PLEASE print it out and take it to her... we HAVE to educate these damn doctors who are 10 years behind the times :(

 

This is the link for the article on false positives: Dr Leone is one of the top H specialists in the country.

 

http://consults.blogs.nytimes.com/2010/08/27/getting-tested-for-herpes/?_r=0

 

This is the University of Washingtons page ... they are the ones who come up with the Western Blot http://depts.washington.edu/herpes/faq.php#faqCat-3

 

BTW, your Dr should know that Western Blots are well known in the testing world... there are other versions for HIV, Lyme, and other diseases.

 

And just remember ... *IF* you have herpes and you've had it awhile, then odds are REALLY high that all the odd feelings that you are freaking out about are nothing to do with H as your body has already got it under control ;)

 

(((HUGS)))

 

 

 

 

 

 

 

 

[riverstyx]

@redroses

 

What you said about paranoia is so true in my experience. I paid intense and unceasing attention to the area after receiving my two false-positive tests (both were low-positives). Not surprisingly, I found things. I researched everything, and went to the doctor at least a half-dozen times to verify that what I was experiencing was not in fact herpes. It was a very difficult time.

[forgivenessandpeace]

@riverstyx And how did you feel when you got the final, definitive result that you are h-?

 

Were you relieved?

 

 

[riverstyx]

@forgivenessandpeace

 

I'm revising what I first said. Yes, I was enormously relieved. But I also had a kind of more weathered and mature perspective by the end of my saga, than I did at the beginning. To me, getting the "negative" results at long last made the puzzle piece fall into place, but I always knew it was there, I just had to search for it the right way.

 

As soon as I got the second false-positive I knew that I was in the fight of my life--up until then, at least. In retrospect thinking that way was silly, because I now realize that "h" is so undeserving of the stigma that accompanies it. But understand, while I am familiar with all of the baser motives of human nature, and all of the unfortunate things that happen to people every hour of every day, nothing like that had happened to me. I lived quite a sheltered and comfortable existence growing up. So when this came along, I literally couldn't believe it. But I am so proud of how I reacted: I was so relentlessly aggressive and I remorselessly questioned every doctor, and real and imagined "expert" to find a definitive answer. I also angered a lot of people and hurt many of my relationships, because people wanted me to "put this behind me" and "move on." How little compassion, how little empathy, some people have. It was disappointing to see this revealed in some of those closest to me. But I *refused* to move on until I had my answer, one way or the other. Now, I have it. And I wouldn't change a thing. I would do everything all over again exactly the way I did it.

 

And would you believe I don't even get "cold sores" around my mouth? My *entire life* I assumed that the little welts I would get in the corners of my mouth were from HSV-1. But no, they were from a bacterial infection which would "come and go" from time to time. Very odd, and very confusing, if you ask me.

 

I also learned that when things get very difficult, people start to show their true colors. Hard times have a way of sifting out those who really, truly are in it with you for the long haul, and those who are just, well, full of shit. So I'm grateful for my experience on that account as well.

 

And you know what the funny thing was? Everybody was acting like I had *created* this *whole* crisis by getting tested in the first place. Even my therapist said "oh well you look for a crisis and you 'found' one and you walked right into it." As if I had known beforehand the entire time that I would be one of the few who received not one, but two false-positives, and that I just decided to take the plunge and get tested anyway, because I'm a masochist like that!

 

But I am grateful because I came out a wiser, smarter, stronger, more aggressive man who now *knows* beyond a shadow of a doubt that he can do anything that he wants, and can accomplish anything he wants.

 

I wouldn't trade that feeling for anything in the world.

[forgivenessandpeace]

Wow, what a thing for your therapist to say! I'm glad you were able to take something positive from the experience and come out even stronger in the end :)

[WCSDancer2010]

And you know what the funny thing was? Everybody was acting like I had *created* this *whole* crisis by getting tested in the first place. Even my therapist said "oh well you look for a crisis and you 'found' one and you walked right into it." As if I had known beforehand the entire time that I would be one of the few who received not one, but two false-positives, and that I just decided to take the plunge and get tested anyway, because I'm a masochist like that!

 

Yeah - because you were RESPONSIBLE you created a crisis??? SMH. You need a new therapist my friend!

 

And good for you for taking the LESSON from the experience (which is what your therapist should have been helping you with instead of telling you that you created a shit storm and you walked into it. I hope you read her the riot act when you got the all clear.... and then told her you were finding another person who will HELP you when you are in crisis ... ugh...

 

EVERY life experience has the possibility to teach us something. Some lessons are harder than others. But it's up to us to choose to take what we can and be thankful for helping us to become better people. The alternative ... being a victim and giving up, is a pretty crappy way to live :)

[redroses]

@WCSDancer2010 thanks. I also got an article from Westover to share with them. I was mailing it to them because there's more than 1 Dr in this OBGYN practice and I've seen 2 of them already. I think they need to know how to give "responsible results" to people IF they are going to give these tests. Whether my final diagnosis is positive or negative, they need to give their patients all the current info that's out there- it's their responsibility to do so.

 

I've learned to be my own best advocate since my husband had brain cancer and I was thrown into a situation where I had to research his condition to make the best possible medical decisions for him. How did I know what the surgeon was telling me was accurate? I never had to do this before. So, I researched everything that night I came home from the hospital before they did any surgery or treatment. They only kept him comfortable and brought down the swelling until I weighed the options.

 

When I got my diagnosis I was up til 3 AM researching the condition. I found this wonderful site and Westover's. That's how I found out about false positives. If I had not read it, I wouldn't have known that was a possibility. We have to be our own best advocate and not be afraid to offend these Drs. It's our life.

[WCSDancer2010]

You are soooo right! I learned that too with several experiences (myself and others). Too many times what the Dr said was either inaccurate, biased, or not right for me. Glad you have learned that! I would be interested to know how your visit goes once they have had a chance to get more educated :)

 

I'm hoping to work more with the nurses and doctors in the OBGYN office that is in the building I work in. If that works out I hope to go around more Dr's offices in my area to talk to the Dr's and NP's to help them understand how to approach the whole process in a better informed and more compassionate manner.

[redroses]

@WCSDancer2010 that sounds like a wonderful opportunity for you and the medical professionals. I am mailing my Drs. the info today. I have an appt in December for a sonogram to follow-up on some fibroids, so it will be interesting to see what they say, if anything. But I'm not holding my breath. I'd be happy if they use the info on the next person.

 

I'm hoping by then, I'll have a confirming diagnosis. I think I'll be OK either way. I've made peace with myself and all this. I think having a supportive partner has helped, although the thought is always in the back of my mind that things could change in an instant; then I think if we can get through this we can get through anything; and then I go back to thinking there's always the chance he might feel differently.

 

But then I think, but isn't that LIFE? There are just no guarantees. So stop obsessing and enjoy!

[WCSDancer2010]

But then I think, but isn't that LIFE? There are just no guarantees. So stop obsessing and enjoy!

 

YES!!!!!!! Or as I say ... "Don't believe everything you think" ;)

 

And one last suggestion... take a copy of all that stuff WITH you in December as well for each doctor (at least the ones that you have already worked with) and ask that they EACH read it (in case the one you mailed doesn't get past the receptionist!). If you are seeing the Dr you already saw, (the one who knew nothing about FP's and WB testing) I'd even SHOW her that article with Dr Leone ... because hopefully if you can get ONE Dr to be informed, they will talk to the others and help educate them (I'd even ASK her to do that). And make sure they know about US! Maybe print out some of the Handouts and ask her to send her newly diagnosed patients to us ... because THEY don't have the time to hold everyones hands through this :(

 

If we ALL tried to educate our Dr's, we might be able to improve how they work with their patients in the future ... and someone will unwittingly benefit from that little bit of time that we all took to make sure that the Dr's had more up to date info and understanding of Herpes ;)

[redroses]

My boyfriend just called- he's positive for type 1 and negative for type 2. Guess I'm going to NJ for additional testing. This is really upsetting, but that's life. Got to learn to roll with the punches. I'll know if he's had a change of heart now.

[riverstyx]

I'm from New Jersey, where will you go for your test?

[redroses]

Westover Heights is arranging it with a Quest lab. Haven't heard back from them yet.

 

Did you have that test?