Herpes testing - confused

[Scared16]

I am very confused about herpes testing. I've read a lot about herpes testing in the last couple of weeks ... It seems that none of it is accurate ... There can be false negatives as well as false positives. Even a culture can be false positive, although it is rare. Most professionals discourage people to test for herpes if there is no symptoms, however it is people with no symptoms that transmit it to others ...If you are unlucky enough, you fall in the 20% that shows symptoms ... If you do, you are doomed ... The stigma will make you feel like someone worthless plus you will experience occasional, uncomfortable OBs ... If you are dumb ... You will just retest until you get a negative result and pretend it never happened but will cause heartache down the road for someone you infected ... This is my understanding of testing for herpes after few weeks of research ... It just seems that the good, ethical people, that are worried about others, are the ones that are touched emotionally, and nobody else ... I just find it really unfair...

[2Legit2Quit]

So you've been diagnosed w H? How were you diagnosed? How long have you had it? What specifically are you confused about?

[WCSDancer2010]

@Scared16

 

Hello and Welcome!

 

What got you interested in researching Herpes Testing?

 

One of your biggest lessons here is to be very careful about where you get your information. There's a saying "A Little Learnin' is a Dangerous Thing". IE: any time you get part of the facts, you run the chance of actually finding yourself coming to the wrong conclusion about things. So I'm glad you came here to get all this mess straightened out.

 

So - Testing. Many tests are not 100% accurate. There's so many things that can cause inaccurate results.

 

Swabs: As for Herpes testing, swabs are FAR more likely to have a false negative (simply because the Dr couldn't get a good swab, perhaps because the lesion is already healing) than a false positive. A swab looks for the actual virus ...they get a culture and grow it in the lab. So if they see the virus in the culture, you have the virus.

 

Blood tests: Most people get the Elissa IgG test (don't ever get the IgM ... that one is not at all accurate and is considered worthless by any practitioner that knows their Herpes info). This one tests for the ANTIBODIES for Herpes. There are others out there, some better than others so you want to ask what test they use. For the Elissa IgG the accuracy is considered to be 97% ....

 

Now, here's the curve ball that may account for that 3% "inaccuracy". When someone tests for HSV with NO symptoms and they come up "positive", there's a 40% chance of a false positive if the result is under a value of 3.5. Of course, with lesions, the test is just confirming WHICH one you have. Without symptoms, for some reason (perhaps the person was exposed to herpes but it never established...likely because not enough of the virus was present and the person's immune system killed the virus off) *some* people come up with a low positive result. We always suggest if someone has a positive result with no symptoms, with the <3.5 value, that they retest in a couple months or do the Western Blot test.

 

Western Blot: The Gold Standard of testing. Where the Elissa looks for 1 of the proteins for the Herpes Antibodies, the WB looks for 14 or so and is 99% accurate. It's used to clear up unclear results (ie. for those who have the low positive with no symptoms) , but you usually have to pay out of pocket for it.

 

Thus, testing is general is accurate enough to have confidence in it as long as you understand the false positive issues with asymptomatic people and the WB test clears up any questionable results.

 

Yes - 80% of people are "fortunate" enough to not have OB's ... but of the 20% who do, not everyone has "occasional, uncomfortable" OB's.... some have ONE OB and then none ever again. Some have them a few times in their life. Some have them every month. You just plain can't tell who will have which reaction to the virus. But I would venture to say that only 5% of all carriers have ongoing symptoms beyond the first few months or a year that are enough to cause issues for their life/work/mental health. There's certainly FAR worse things that one could contract that would cause you much worse long term issues for most people...Lyme disease being the first that comes to mind.

 

If you are unlucky enough, you fall in the 20% that shows symptoms ... If you do, you are doomed ... The stigma will make you feel like someone worthless

 

Well, yes - the stigma DOES cause a lot of heartache. But you know were *most* of it resides? In the mind of the carrier. Let's put it this way. If your friends are REAL friends, they will love you regardless. And sure, many people are very poorly informed and family/friends can sometimes be (usually unwittingly) cruel or harsh... but if they really care for you, they will get educated and informed and will love you no matter what.

 

I tell the newly diagnosed that Herpes is a GREAT Wingman. Sounds crazy, right? But you soon find out if the people who you have around you are GOOD people ... people who don't judge, and who see you for who YOU really are ....

 

I came out to over 1000 "friends" on FB. Not ONE was at all ugly or rude about my disclosure. I explained I was going public because I felt that people needed to get properly informed and I was tired of the emotional pain that I saw others going through. Everyone was supportive and remain supportive... some even now send their newly diagnosed friends to me because they know that I will help out. I've also put my status on some of my dating profiles ... again, not ONE negative result there.

 

Now, does that mean people are not cruel? No. Ella Dawson, a beautiful young soul who is in her early 20's, came out publically and became something of a "celebrity" ... and she has certainly got some pretty awful responses out there ... BUT, the VAST majority of people have been very positive with her and many say that her coming out, and being so open and frank, has helped them to come to terms with their condition. IE: FAR more people have been supportive and thankful for her transparency than not.

 

And really, the bottom line is, if someone is that nasty about it, what does that say about THEM???? Their ugliness is just a reflection about their ugly heart, and it has NOTHING to do with the person that they spew their vile, nasty opinions at. Can you see what I'm saying here?

 

If you are dumb ... You will just retest until you get a negative result and pretend it never happened but will cause heartache down the road for someone you infected ...

 

Well for one thing, you can't "retest until you get a negative result". Once you have a true positive result, it will remain positive. Sure, some will convince themselves that they are "cured" when they stop having symptoms ... and some will be (incorrectly) told by their Dr that they are safe to have sex if they don't have symptoms...and that is definitely something that needs to be changed. The education around Herpes is sadly lacking and (as you have found) confusing and often inaccurate. I have plans to try to get a campaign going to change that but right now I am dealing with a few life situations that are putting that on hold. BUT, there are people like @Adrial, myself, Ella Dawson, @SweetCicily, and others who are out, who are doing what we can to educate the public about Herpes. I've seen FAR more in the news and such in the last year than I've seen in the previous 35 yrs all together in the press, which gives me sooo much hope that we are finally making headway with the press and the public in general.

 

Yes - as it stands, it's unfair that those who are ethical carry the brunt of the stigma. BUT, I've seen people grow and become soooo much stronger than they ever knew they were thanks to Herpes (It's that "Opportunity" thing that we encourage people to consider here!). I've seen literally hundreds of people find love of a nature that they never knew existed after getting Herpes because they started to pick better partners (thanks to being forced to slow down the early part of the relationship).

 

Like most things in life, your approach to the problem is far more important than the actual issue itself. You can CHOOSE to let things get you down, or you can CHOOSE to learn and grow from the challenges that come your way. We are about supporting the latter approach here.

 

I hope that clarifies some of your confusion ... you may want to check out the links below for more clarification and perspective 🙂

 

(((HUGS)))

 

http://herpeslife.com/herpes-forum/discussion/2886/herpes-yoga-and-self-love

 

http://projectaccept.org/who-gets-hsv/

 

Handouts + disclosure e-book:

https://www.herpesopportunity.com/lp/ebook

Herpes facts video

 

 

[Scared16]

Thank you so much ...

[Scared16]

WCSDancer2015, i know that anything in life is possible, but what are the chances of someone that is a carrier (never any symptoms) to test negative on IGG test?

[2Legit2Quit]

They coukd possibly test negative up to 6 months after infection, but most come up positive by 4 months.

[SunDevourer]

Just what I needed to read.

I am, or was in the same situation in regards to testing. I was told that I tested reactive for hsv2,but they had also said ( in what ever culture test they did) that I was showing reactive for syphillis first! Before they said it was herpes. I had a lesion( and anything that breaks the skins surface is a lesion. It's broadly used) and initially the nurse said it could be two different things. I got the penicillin shot and pills incase my systems didn't clear up.

 

Well... After the penicillin shot everything cleared up nicely. Which wouldn't have been the case if the lesion was herpes related, but they did say I had hsv2... And it turned out I did have syphillis.！(◎_◎;)

I mean that was nice to know that I didn't have syphillis because I was feeling like trash and a thirsty thot if anything. And that's exactly what the miss informed would want you to believe.

That you're trash. After all the reading I've done ( yes the Internet is dangerous Because I almost thought I had MS and I certainly thought I had lupus for a weekend.)

 

I digress, I've learned that H really isn't the issue. It's only as big of an issue as we want it to be. Like feeding your problems so that they get bigger and worse.

 

Anyway. I would like to get tested again just to easy my mind. Because (to make a long story short) the clinic I went to didn't quite have their things together because they got a new systems and no one really knew how it worked and if that lesion was my one and only outbreak. I won't feel relaxed knowing thing cleared up after the penicillin shot. I left with so many unanswered questions. Yes, they did say that it's very common, but they kind of just wrote me off like its no big deal and kept on asking if I was interested in prep like some up sell.

 

I don't want to be that person convincing themselves that they are ok when they are not. Even with just one out break and to think I'm ok and lie to myself about it. I couldn't live with myself. That and since there is no way of telling how long I may have had it. I could have had this for a couple of years and it's best just to know and be informed instead of living in ignorance.

 

Ok... I'm done. Hope I made since.