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MIND BLOWN!


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Ok guys. I posted my story here but I have new info. I will try to be concise.

 

Years ago, many many years ago- a Dr gave me a Western Blot test for HSV 2- diagnostically, not to "confirm" anything. I was dealing with HPV (low risk) and she thought I should be tested for HSV 2 with a Western Blot as well even though there were NO visible symptoms. I had itching because of the hpv warts, and she was SURE it was herepes because according to her itching is not possible with hpv warts. She didn't do any other test that came back equivocal or see anything- she just went straight to the Western Blot. This was WAY before anyone had even HEARD of a herpes test...

 

 

So it comes back and she tells me it is positive. Ok so then I was dealing with not one but TWO lifelong std's. I was still not convinced I had it as I never, EVER had any symptoms... Yes, I understand that this may happen but I still just felt she HAD to be wrong... and many, many years later I still haven't had ANY symptoms ever "down there". I also had another test years later with my GP- the Herpeselect, an IGg type specific test- and it came back negative. Well, I was all "Hallelujah" (not because herpes is a catastrophe but because I had suffered so much mentally and emotionally with the way I got it from a cheating, unconscionable sociopath of a BF who also "gifted me with HPV). And so the Dr who gave me the second test said that my body had quit making antibodies for it and I probably still had it since the Western Blot said so. OK so that pretty much screwed with my emotions pretty hard:

 

"I have it, oh no! Wait I can't have it I have NEVER had a symptom..."

 

"This second test says I don't have it YAY!"

 

"Wait, what...? I still have it...? Then how many other people are in this situation and think they don't have it but do, because they also got multiple negative IgG type specific tests...?"

 

And NOW, some MORE years later, just to see, just because I am curious... I get another Herpes Select IgG type specific test... and it comes back NEGATIVE.

 

RECORD SCRIIIITCH.... What?!? AGAIN?!?

 

Ok so my Dr NOW says I don't have it, I should just go with the TWO negative tests I had.

 

Ok so this obviously raises a TON of questions.

 

Not the least being, if I do have it and it does not show on this type specific test, TWICE-how many other people are walking around thinking they are "fine" and actually have it, because they also got multiple false negatives???

 

And if you have never, EVER had any real symptoms... Not a first episode, not a blister, NOTHING... WHY bother disclosing?

 

I have been living tormented with this for years. And now I get a second round of negative result.

 

I am just so DONE with this. I am going to go with my doctor's advice. He is the doctor. I had TWO type specific tests... I am just done with this, I am no longer considering myself HSV2 positive. Anymore digging at this point seems ridiculous. This all has caused me so much stress I barely even recognize myself anymore. I have NEVER, EVER heard of anyone with a story like mine and there is NOTHING worse than being truly alone with a thing. I am done.

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I've heard on here that some people never test positive with a blood test but these people have had a positive swab. The swab is the best way to go. That being said, I would consider yourself negative! YAY!!

 

This is one of the reasons they don't want people to get routinely tested for herpes. As much as us positive people would like everyone to be tested and realize how common it is, those false positives can really mess people up.

 

Congrats!

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Well, that kind of proves my point. Again, how many people are getting tested and think they are "fine" when in fact they are positive? For all I know I have been rejected by people who actually have it and believed they didn't.

 

I just don't know how I feel about people getting tested anymore when they have NEVER had a symptom. I really think they should just test pregnant women and call it a day! And anyone who has a special circumstance, like an immune disorder- might make a request of their partner to be tested too. Beyond that unless a person has an actual outbreak and they want to to a test in addition with a swab, I think it's really getting to be a bit much.

 

I mean what kind of head job is it to have believed I have not one but three lifelong std's, (HSV1 since I was a kid) and now one? Just one. HSV1. No more HPV according to my Dr it clears your system after a time. I haven't had any issues with that for well over 10 years. And still to date no HSV2 outbreaks.

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@pecan Testing of pregnant women is a complicated issue. 25-30% of pregnant women have genital herpes and most don't know it. Going into pregnancy with an established infection, the risk of passing it on during childbirth (neonatal herpes) is extremely low (1/5500). However, the risk skyrockets to 30-50% when a women is infected with GHSV1 or HSV2 or during the last months of pregnancy. The women at greatest risk during pregnancy are those who are HSV2- going into pregnancy, but sexually involved with partners who have HSV1 or HSV2. So first, widespread testing of pregnant women would presumably cause lots of drama at the beginning of pregnancy, given most of these HSV+ people don't know they are infected. Then the partners would also need to be tested which would create more drama. And the timing of testing would have to be quite precise throughout the pregnancy. I can't imagine this happening. For now, I believe the standard of care is hoping women who know they are infected or become infected during pregnancy inform their doctors so they can either take antivirals toward the end of pregnancy or check them for signs of an outbreak immediately before delivery.

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@pecan First of all congrats on the two negative titer tests. If you are titer negative x2 go with that and asymptomatic believe it. I think all of us wish we could be titer negative. That's wonderful news! HPV almost everyone in the dating world has. I was told to enjoy the infection when I asked for the vaccine. At 35yo I'm too old for the vaccine. Anyway I am so sorry with how you were exposed to hpv. You are far from alone in that gf/bf of "nasty cheater" category that seems to be in every few threads. Good luck to you and have a fabulous 2017!

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There are so many reasons why they don't test pregnant people without signs or symptoms. Optimist has some good points. Really, the blood tests are not reliable in the way that we would like them to be. Even the select and western blot have issues. So unless the woman giving birth has signs or symptoms of an outbreak, it would be exactly like routine testing- unreliable, cause unnecessary panic, and ruin lots of relationships. The more I look into the testing and the rates in which mistakes can happen, the more I understand the CDCs standing.

 

I would love for herpes to be added to the routine panel just to kill the stigma associated with the virus- meaning the more people that test positive the more the stigma would have to die down. But realistically, it would cause many problems, because the testing just isn't where it needs to be. It would harm more than it would help.

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  • 2 weeks later...

Hi Pecan.

 

How do I begin. Le sigh. June 2014-I received a call from the doctor. She informed me that my test came back positive for HSV-2 antibodies (1.02 value). I questioned her about the test validity bc I too had never had an OB. She states that she believes that I should be retested bc I have a low antibody count & have never shown any symptoms. I proceed with life & resolved to tell my then boyfriend about my diagnosis the same day that I was informed. He says it's no big deal & that we would not break up for that.

 

A year later, i was retested (annual exam). My doctor calls me & says she has never witnessed anything like this in her entire career. She states that I am negative for all tests including H. My mouth opens & I want to believe this is true, but can't.

 

The next few months, I retest & it shows negative once again. I'm still in a state of disbelief. Both times that my test have shown negative, the values were equivocal (0..90 to be exact). So I operate as if I have it.

 

But to piggyback off of your statement, I often wonder how many others walk around thinking that they have a clean bill of health but are in a similar situation.

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  • 4 weeks later...

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