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Several negative blood tests, 2 positive cultures - feedback?
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Several negative blood tests, 2 positive cultures - feedback?

After dealing with a potential herpes diagnosis for the last year, seeing my doctor numerous times, being tested repeatedly and spending hours doing my own research, I am finally posting a question! Here's a timeline of events:

May 2009 - developed textbook genital herpes symptoms for the first time. Very painful outbreak of open lesions all over my genital area. I had a blood test, which came back negative, followed by a positive culture a couple of days later. Two different doctors explained to me that this meant I had been recently infected (by my then boyfriend). The culture came back positive for HSV-1 only, not HSV-2.

October 2009 - went back for blood test, assuming that I would have developed antibodies and it would be positive for HSV-1. Blood test was negative for HSV-1 and HSV-2, but positive for HSV 1 and 2 combined. My doctor had no explanation for this other than test error. She recommended repeat testing a couple of months later.

December 2009 - Repeat testing, negative for both HSV-1 and HSV-2. At this point my doc said to assume I did not have herpes and that whatever my outbreak was in May, it was something else. At the end of December I had a very minor, short outbreak that resembled what had happened before, but was MUCH less severe. Honestly, by this point I was so tired of the whole thing I just let it go.

May 2010 - went in for my annual exam and had my doc test one last time. Negative HSV-1 and HSV-2. Then... two weeks later (almost exactly a year after the first outbreak) I had one that, though less severe, was almost identical to the first. Went back to the doc, had her do a culture and I just found out yesterday that it was positive for HSV-1. Famvir both times (this May and last May) seemed to help shorten the timespan of the symptoms.

So... what on earth am I to make of all this? At this point I assume I have HSV-1 genitally. I assume based on the severity of the 2009 outbreak that I had recently contracted herpes at that point, from the guy I was dating at the time who told me he didn't not know he had it. To my knowledge he has not yet gotten tested, which certainly would have helped both me and him. I asked him repeatedly to, but he wouldn't. So I can't add any information about his status. I assume I got it from him based on not having been with anyone else in over a year before him, never having had an outbreak before and having a negative blood test at the time of an outbreak. Does it seem a fair assumption to make that I got it from him?

More importantly, why would ALL of my blood tests be negative over the course of a full year, yet the cultures are positive?  I have come to terms with the fact that I have this, have talked openly and honestly with my new boyfriend and feel like I have a pretty good understanding of what this means, but the test discrepancies are so confusing to me! Is it possible that I do not have and will never develop the antibodies that would be present when testing my blood?

Thank you for reading this. I hope it's clear enough. I'm honestly just looking for some feedback, insight, opinions about the confusing nature of the results. Going forward, I am assuming I have herpes, but it's been a long, confusing road to get to that conclusion!  Thanks for any thoughts you can offer.
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101028_tn?1348750963
there was no reason for any blood testing after you had the first hsv1+ lesion culture result.  you know what you have and you know exactly where you have it.

Even the best blood tests we have still miss 1out of every 10 hsv1 infections. testing negative on the blood tests isn't all that unusual and means nothing.  

You know you have hsv1 genitally. No reason to doubt that or to get any more blood testing done.

has your new partner been tested to know his status?

grace
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Avatar_m_tn
Penelope31

What were your numerical values for your blood tests?
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101028_tn?1348750963
please - keep your questions about your own situation in your own post . I know we've discussed your own situation previously.

the odds of not really having hsv1 after MULTIPLE TESTS is incredibly small. the more tests you have, the more the odds are that you really don't have hsv1.  

the reason this person doesn't need blood testing done is because she has a + lesion culture. Not only that - she had 2 + lesion cultures for hsv1.  the only way the lesion culture is wrong when it is positive is clerical error. the odds of clerical error twice are almost impossible.  

I don't mind when folks question what I say by no means but you have consistently jumped into other people's posts like this about your own situation as well as you seem to be overly critical towards me . please keep it in your own post or I won't hesitate to ask medhelp to warn you which can result in a suspension of posting privileges.  I respond to each person specifically as it applies to their situation. what I say to one person, might not apply to your situation which is why asking questions in your own post about your situation is the best way to understand my responses to your own situation.  

grace
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Avatar_f_tn
Thanks for the feedback. When my first blood test was negative last year, just three days before a positive culture, my doctor explained that it was because I had most likely been very recently infected. So she recommended I come back after a period of time for repeat blood testing. The confusing results from the second blood test in October 2009 were what led to my doubt about the true diagnosis and the subsequent repeat testing. Clearly though, after this recent outbreak and another positive HSV1 culture, I realize that I have it and don't see a need for repeat testing.

Just for information's sake, those October blood results were:

HSV1 IgG: 0.33
HSV2 IgG: 0.20
HSV1/2 AB IgG: 2.56

I'm looking at the printout of results now and it says that .89 or less is negative and 1.11 or greater is positive. That 2.56 for the Type 1 and 2 combined is what seemed so bizarre to me.

I have explained all of this to my current boyfriend and he is doing his own reading as well to educate himself. I will encourage him to get tested. All things considered, seems that HSV1 is likely to not be quite as bad as 2 might be and it won't be a huge, horrible deal.

Thanks for responding. I was getting a little frustrated trying to sort this out on my own.
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101028_tn?1348750963
the combined herpes tests often are falsely positive though perhaps in your case, it was doing a better job at detecting herpes in your body in general but the type specific test didn't do good of a job.  The are different tests completely.

Now you can educate your provider on all of this :)

grace
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Avatar_m_tn
SO IF ONE TEST MISSES  AN HSV1 INECTION, the odds of 3 or 4 tests missing the same one are greatly reduced as someone tests as often as penelope didÉ How come her tests are all negative even though she knows she has it.
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101028_tn?1348750963
sometimes it's just the way it goes. that is why when someone is consistently testing negative on the herpes blood tests but has questionable symptoms I always recommend going for the lesion cultures instead of more blood testing. I've even recommended to folks to ask to do home daily pcr swabbing to look for herpes.  For the vast majority of people though, 4 negative tests is going to mean not infected.  

I"ve replied to the 2 of you in your own posts numerous times about your own situations to help guide you.  As far as "keeping it real" genx - I disagree - I think you are holding onto an obsession about herpes.  

There comes a point where you have to let go of the herpes obsession. Multiple negative tests and negative cultures as well as symptoms that aren't typical of herpes are all good indicators of it is something else going on.  

grace
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Avatar_f_tn
Hi grace I had a similar situation. This year in feb I had an outbreak, I went to see my doctor within 24 hours of the outbreak. She took a culture test as well as a blood test, my cultur test came back positive to herpes type 1, however my blood test came positive to type 1&2. I took another bloodtest approximately 3 months later and it was positive to hsv 1 and negative to hsv2. For the next few months i kept getting irritation down there, however never did I get blisters like the the very 1 outbreak I had. I decided to get a blood trst again and again it was positive to both type 1&2. I'm really confused- would you say I have type 2?
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