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Negative, then Positive...Now Negative Again


bewilderedandconfused

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Ok so I'm confused. Here is my story:

November 2008, my girlfriend with whom I've been having unprotected sex with approximately 3x daily for a month tests positive for the first time in her life (no noticeable outbreaks) for HSV2 via blood test (type unknown). I freak out, but figure I'm screwed because of all the unprotected sex. I test Negative via blood test (type unknown) for both HSV1 and HSV2. I get sick w/ sore throat and flu like symptoms for like 2 months...but no outbreak. In December of 08 or January of 09 we get retested with biokit tests. She again tests positive for HSV2 and I test Negative. In March 09, I decide to get a final test via the internet at www.tstd.org. I get the herpes select IGG test and it comes back negative for HSV1 and positive for HSV2 with a value of 2.61. I was expecting a positive result and figured oh well...I love her. Unprotected sex continues for almost 2 years after that with intermittent use of valtrex by her. She began to have what we guessed were previously missed symptoms that we figured were outbreaks. I still have never had an outbreak. So naturally, as these things go, she leaves me at the beginning of November this year. Last week, I went to go and get tested at the doctor again just for the hell of it. I got my results today and they are NEGATIVE for both HSV1 and HSV2. The test used was not herpes select but Multiplex Flow Immunoassay BioPlex 2200 IGG. There were no values for the result just negative, negative for HSV1 and negative, negative for HSV2.

Once again, I am bewildered and confused. I have decided to go and get an additional test from a different office. If this final test comes back negative, am I negative? Did the internet testing people screw it up? I am just trying to figure out if I in fact am capable of spreading HSV2 to others. Any comments are welcome and thanks in advance.

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It is possible you have actually been negative all along. There is a problem with the reference ranges for the herpeselect test. A case study by U of Washington showed that the values are off, and the low positive cutoff number should probably be 3.5. The problem is, the FDA will not allow them to change that unless they do new clinical trials, which are expensive.

So anyway, your 2.61 on the Herpeselect test may well have been a "false positive" result.

More info (full explanation from a herpes expert) here:

IgG Test Confusion

:wavey:

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I agree. Your 2.61 may very well have been a false positive. I would take one more Biokit for a tie breaker (or go w/ a Western Blot).

Good luck & let us know how it goes.

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  • 4 weeks later...
Well, I just wanted to follow up:

WB came back negative for HSV...

I'm glad to hear you went ahead and got that Western Blot test done. Either way, you would have been able to get a more definitive answer. Bonus: You found out you don't have herpes!

:flowers:

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  • 4 months later...

So what does this mean and where can I get the Western Blot Test? I just got an online blood test and my result came back for HerpesSelect at 1.9... I think I want to get this Western Blot thing.

The doctor on the phone just said you're positive.. I freaked out.. then saw the numbers the next day.

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So what does this mean and where can I get the Western Blot Test? I just got an online blood test and my result came back for HerpesSelect at 1.9... I think I want to get this Western Blot thing.

The doctor on the phone just said you're positive.. I freaked out.. then saw the numbers the next day.

Hi OldLady ---

Do you have any symptoms? If not, there is a very good chance your 1.9 reading does not represent a true positive result. I'm assuming you visited the link in my previous post in this thread --- about IgG Test Confusion?

Here's a snippet: "There is no 'debate' about the issue; the data are clear. The manufacturer of the most commonly used HSV antibody test in the US (HerpeSelect brand, produced by Focus Technologies) submitted data to the us Food and Drug Administration that showed that results with ELISA ratio values over 1.1 were positive for HSV-2. Later research showed that values between 1.1 and 3.5 often are false positive; the lower the value, the more likely the result is false, even though technically positive."

If you have no symptoms, that makes it much more likely a false positive.

The Western Blot test for HSV can only be processed by the University of Washington, but you can get it through your own doctor. Info is here:

Western Blot, how to get it

:wavey:

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Thank you for the information. I haven't had sex in 16 years and I've never had an outbreak. I've had mild/moderate itching at times but no blisters, disappearing bumps or any of that... so I'm hopeful right now.

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An alternative to the WB is the Biokit HSV2 test, which is a lot cheaper (not counting doctor's visit fee). But finding a doc in your area who uses Biokit may not be easy.

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Thank you for the information. I haven't had sex in 16 years and I've never had an outbreak. I've had mild/moderate itching at times but no blisters, disappearing bumps or any of that... so I'm hopeful right now.

Given all that, how did you come to be tested for HSV anyway? Just curious.

:itsme:

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I got tested because I started dating after a really long time and thought I should get all my paperwork in order so I could ask any potential partners for theirs.

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Western Blot is said to be the best test to get when you have a low positive on igg test, however, if you are having symptoms, the way to know for sure is to have a culture done as soon as symptoms begin. I was with a new partner and had a terrible outbreak within 5 days - culture came positive for HSV2 (doctor did not order a blood test unfortunately)- he tested negative - 6 months later I got a blood test to see what my numbers were - HSV2 -1.58 - - 2 more tests within 1 1/2 yrs - he is still testing negative for hsv2 by igg. In my case, a low number doesn't mean much of anything with a positive culture.

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Western Blot is said to be the best test to get when you have a low positive on igg test, however, if you are having symptoms, the way to know for sure is to have a culture done as soon as symptoms begin. I was with a new partner and had a terrible outbreak within 5 days - culture came positive for HSV2 (doctor did not order a blood test unfortunately)- he tested negative - 6 months later I got a blood test to see what my numbers were - HSV2 -1.58 - - 2 more tests within 1 1/2 yrs - he is still testing negative for hsv2 by igg. In my case, a low number doesn't mean much of anything with a positive culture.

This is whats scares me about relying so much on blood tests. Doctor's I have spoken with act like the results are definitive then I come on here and see plenty of examples of people who simply do not test positive. Does your partner experience any outbreaks or other symptoms?

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tests

I am not with him anymore. He believed his doctor about the tests and how accurate these tests "supposedly" are and being newly divorced, didn't want to continue to take the chance of getting infected. I had never had symptoms until being with him. I do not have hsv1 either (according to the igg test) I just can't imagine it decided to "coincidentally" come out of dormancy within the time frame of a new infection along with horrible symptoms and a culture that still came out positive after 10 days. I now get outbreaks every several months - sometimes with a blister or two sometimes just tired and itchy - I have found so many things written clinically that do not seem to match up to the claims of these igg tests. You have to figure the way people would panic if they couldn't say something was reliable. It seems the biggest obstacle is when someone already has hsv1 and acquires hsv2. There is some evidence that antibodies to hsv1 fight a newly acquired hsv2 infection, therefore, there is not enough buildup of hsv2 antibodies to be detected.

Have you found out anything new on your end yet?

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I am not with him anymore. He believed his doctor about the tests and how accurate these tests "supposedly" are and being newly divorced, didn't want to continue to take the chance of getting infected. I had never had symptoms until being with him. I do not have hsv1 either (according to the igg test) I just can't imagine it decided to "coincidentally" come out of dormancy within the time frame of a new infection along with horrible symptoms and a culture that still came out positive after 10 days. I now get outbreaks every several months - sometimes with a blister or two sometimes just tired and itchy - I have found so many things written clinically that do not seem to match up to the claims of these igg tests. You have to figure the way people would panic if they couldn't say something was reliable. It seems the biggest obstacle is when someone already has hsv1 and acquires hsv2. There is some evidence that antibodies to hsv1 fight a newly acquired hsv2 infection, therefore, there is not enough buildup of hsv2 antibodies to be detected.

Have you found out anything new on your end yet?

No, I am just so confused. A little background for you... Last year I was out partying with some friends, one of whom I know has both hsv1 and hsv2. We both had way to much to drink and I ended up waking up in bed with her. No recollection of if we had any type of intimate contact or not. That was Sunday night and Wednesday morning I woke up with a weird stinging sensation and red area. However there were no blisters. Went to the clinic, which is where I learned that they don't test for HSV. They looked at the red area and said it didn't look like herpes.

I scheduled an appt with my derm, and before they could take a look I got this weird bump on my lip. Felt sort of like a pimple, but grew really fast and my lip was sort of swollen. Well I go to the derm and first thing they look at is my mouth and say yup its a cold sore, but don't do a swab. Check out my genital area and says it is not herpes and the symptoms on my lip are unrelated.

To make a long story short I have been to my primary care doctor and another dermatologist since. Both have given me IGG blood tests and every one has been negative for both hsv1 and hsv2. My primary says I couldn't have had a coldsore because of the blood test and that the red irritation on my genital area is nothing to worry about. I have had tingling pain in buttocks and upper legs which he also dismissed as anxiety.

Well, still unconvinced I have consulted with Terri Warren who ordered a Western Blot for me to take. Results came back negative again for both types. My only advice was if I get another coldsore get it swabbed and that it was improbable, not impossible, that I actually had either strain of herpes.

So now I have no idea what to do. Genital red patch keeps occurring, but I have already showed my doctor this, so going back won't help. I wish there was some type of definitive answer. Right now I am actually hoping the sun this summer induces a coldsore on my mouth. That way I can show it to the doctor who thinks Im crazy and then maybe he might take my concerns about hsv2 seriously, being that the negative test could indeed be wrong.

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I'm confused too because I had one doctor tell me from a visual inspection only that I had bacterial vaginosis, herpes, and a yeast infection all in one appointment. She didn't do a culture or blood test, but told me she was 100% positive that's what it was and put me on antivirals. A few weeks later, at my boyfriend of the time's behest, I got a culture done. All the symptoms were gone by then except mild itching. The test came back negative, and the second doctor said he too was 100% positive I didn't have it.

It's 8 mos later now, and I can't tell if I've had any further symptoms. I may have had something in January, but I was out of town with family and couldn't get it checked. It looked kind of like a pimple though.

I don't know what I should or even can do because I really can't afford anything other than rent, food, and gas right now. But the not knowing kind of bothers me.

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  • 2 weeks later...

I wanted to thank you all for your information on this site. I just got my Western Blot test results today and I'm negative for both HSV-1 and HSV-2... Oddly to me the HerpeSelect test results were fairly different and administered within a week... both positive for HSV-2 but the first was 1.93 and the second was 1.14. Had this site not existed I would not have known to get further testing and I wouldn't be where I am now.

THANK YOU!!!

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I wanted to thank you all for your information on this site. I just got my Western Blot test results today and I'm negative for both HSV-1 and HSV-2... Oddly to me the HerpeSelect test results were fairly different and administered within a week... both positive for HSV-2 but the first was 1.93 and the second was 1.14. Had this site not existed I would not have known to get further testing and I wouldn't be where I am now.

Glad you had a happy result, OldLady. This is just one more example of this problem with that one particular test kit.

Even many doctors are not aware of this, but any value below 3.5 on the Herpeselect ELISA test is not a definite positive result. The published reference values for that test are skewed.

It is great this resource exists, so folks can come here and discover this info.

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