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PostPosted: Wed Jul 21, 2010 5:14 pm 

Joined: Tue Jul 20, 2010 4:02 pm
Posts: 12
Location: south africa
Hi there,

I've been struggling with doctors for the past few months. I had unprotected sex with a partner in Oct, almost 2 weeks following i developed some sort of infection, which a dr diagnosed as herpes. I received an IgM and IgG blood test a few days later: IgM= positive for HSV 1 and 2, IgG= negative for HSV 1 and 2.

I am fully aware of the uselessness of the IgM test. So i went for a IgG blood test a few months ago. My very old-school-thinking gynaecologist gave me some advice but I insisted on getting another blood test. I was under the impression it was IgG, but no, it was PCR. It came back negative for HSV 1 and 2. I have done my research and apparently PCR is very sensitive to the viruses, however (on another forum) appaerntly it is not!!!!!

I don't know what to do. I have been shattered by this experience and (like anyone would want to) I desperately want to believe the PCr test, please advise me if I am living in a dream world or what should I do.

I still keep in contact with the guy who I slept with BUT based on all these confusing results I don't want to go to him with information that isn't true.

I'd really like your advice on this and I appreciate you taking the time to reply. I wish these medical 'professionals' wern't so ignorant and didn't possess selective hearing!!!!!!!! They would have saved me a fortune of money and some sanity.


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PostPosted: Thu Jul 22, 2010 8:23 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
You can't test for herpes via pcr on blood on adults. Herpes is not a blood borne virus so it will not be detected via pcr on blood. Your provider ordered you the wrong test if it was a pcr blood test for herpes. Your provider ( or someone in their office since offices that still use paper rely on the provider asking for herpes blood testing and someone in the office checking off the right box on the blood test order form ) needs to get updated on herpes blood testing because otherwise everyone is going to come back negative for herpes if they are ordering pcr blood tests as a way to diagnose!

betsy

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PostPosted: Fri Jul 23, 2010 3:24 pm 

Joined: Tue Jul 20, 2010 4:02 pm
Posts: 12
Location: south africa
Hi Betsy.

I appreciate your quick response. I KNEW that their info was wrong!! I really hate the fact that these medical pro's aren't that at all! So i went today for more blood tests, and after being blatently embarressed (the women yelled herpes across the room, yes, their subtlety is amazing) they were refusing to give me the test I wanted. They didn't understand the difference with all the tests and even wanted to test my CSF (cerebral spinal fluid!!!) Anyway I finally demanded to get the test I wanted, which is : IgG HSV-1 and IgG HSV-2 and it was compulsary to get Igm for herpes in general... Stupid I know but $80 later I hope I got what I wanted. I do hope they come back negative because the trauma alone for getting the right test done is bad enough!!!

Another question, if its positive, how would u recommend me telling the guy who gave it to me? We keep in contact but haven't been together for 3 months or so.... I'll post the results here as soon as I have them.

Thanks for your help! I'm so lucky I was educated regarding the tests (and this education is straight from the internet) because if not I would have been merrily on my way a long time ago. I'm even considering to writing an anonymous letter to a magazine or something so that everyone is aware of the slack knowledge our brilliant doctors possess!


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PostPosted: Fri Jul 23, 2010 5:00 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
So you've not talked to this guy about this at all? You could've had faster answers last fall if you had and he had gotten tested and shared his test results with you.

I've passed on herpes twice in my lifetime so far. The first time, I had absolutely no idea I was infected with it. The guy I gave it to came to my dorm room and very nicely told me he had figured out it had come from me. He knew me well enough to know that if I had known I had it I would've told him so he assumed I was clueless about it. Even though it took awhile before I was finally convinced that I really did have herpes, I have always appreciated his talking to me and the way he did it. He just sat down with me and very nicely told me how things were. I wouldn't have known that I had it for quite sometime after that if he hadn't told me. testing options weren't what they are now 25 years ago. So my advice is , just tell it like it is - you had negative blood testing at the time of your symptoms and then when you repeated them many months later they were + so it's likely it came from him. If he asks why so long until you talked to him about it, just tell him why - it's not easy to talk about and you wanted to confirm that indeed you had it first. At least I assume that's why you didn't if you haven't talked to him so far about it.

betsy

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PostPosted: Sun Jul 25, 2010 11:41 am 

Joined: Tue Jul 20, 2010 4:02 pm
Posts: 12
Location: south africa
I wanted to be 100% certain that I had it before I spoke to him. May it be cowardly or what not, but I didn't want to confront him about something that he might get defensive over or ridicule me for. Yes, nerves played a great part and the time I tried to tell him he went out of town. I'd rather give him facts on paper. An IgG test only shows antibodies 2-3months after exposure SO I will have pure proof if it comes back positive as I have not been with anyone since him AND he knows this.

Tomorrow is D-Day so only time will tell. I appreciate your advice on how to tell him. I guess I was so devatated and angry when i had symptoms that I had no idea how he would react.

May I ask you a personal question? How did you feel when you knew that you had infected your partner in college?

I' have just had such a mix of emotions due to the 'betrayal' if he did know, my stupidity, the useless doctors, and my wasted money on all these tests.

Thanks so much Betsy, you really are an empathic and kind help.


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PostPosted: Sun Jul 25, 2010 1:56 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
I was completely shocked when he told me he was pretty sure he had gotten it from me. girls like me just didn't get std's :) Of course girls like me weren't supposed to be doing what I was doing during my college years either...he he he Until I got a rip roaring ob so obvious that I couldn't sit still , I kept having a little bit of denial too.

betsy

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PostPosted: Mon Jul 26, 2010 2:00 pm 

Joined: Tue Jul 20, 2010 4:02 pm
Posts: 12
Location: south africa
It must have been quite a shock to be told such a thing... I'm just terrified to how this guy will react when/if I have to tell him. I think one thing that is bothering me a lot is, what happens if he knew he had it all along??? I know not all human beings are deceitful and perverse, but some are.... It's funny how you say "girls like me dont get std's...." Girls like me don't either! haha! And I never thought a guy like him would either... He's gorgeous, insightful, interesting and gentle... So, yeah, I guess I'm also stuck in a bit of denial. I'm going to get the results on Wed and just go from there.

So how are u now regarding acceptance? Are you ashamed? You seem VERY open about it so your advice will be greatky appreciated :)


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PostPosted: Mon Jul 26, 2010 3:08 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
I've never been ashamed of it. Probably more grateful that herpes is all I got actually....lol. I sowed a lot of oats during my college years...he he he to me, it's just one more thing about me and certainly not the greatest of the issues in my life I ask someone to deal with when I date them. Honestly I've had more guys run away because I have big dogs and work crappy hours than I have had run from me once I told them I have genital herpes and oral herpes. That's part of why I volunteer on the herpes boards, to help others see that the social stigma is the biggest hurdle most times, not actually learning to live with the infection. I am very open about my herpes, almost everyone who knows me, knows about my herpes. It's not been a secret for me for a long time now.

betsy

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PostPosted: Wed Jul 28, 2010 2:48 pm 

Joined: Tue Jul 20, 2010 4:02 pm
Posts: 12
Location: south africa
It really is inspiring to be so open about such a stigmatised condition. 'Deconstructing stigma' was part of my major in college so I understand the massive label attached to people with 'exotic' diseases/disorders. I must say that I am grateful to meet people like you, and you yourself, in chatrooms! I wasn't able to get my results today so I'm going tomorrow, scared as anything, but reality brings relief. I just wish people were as educated as you and I, an probably otehr people who have reserched herpes, is. It's great that you're so open about but what happens when people make cracks about herpes without knowing yoyu have it? I've been in many situations where people have oked about it (not targeting anyone) but you know how society is... How do YOU deal with that without reacting? Also, because I come from a small commuinty where everyone's business is everyone's business, do people gossip behind your back about it or say nasty things?

Sorry about the million questions, I'm slightly in awe of you and how comfortable you are with having herpes. One more thing, I have recently been getting the innoculation for HPV (gardisal) will it still work if my results come back positive for herpes???

Thanks Betsy, you are awesome!


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PostPosted: Wed Jul 28, 2010 4:41 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
depends on the situation when it comes to when others talk about herpes. If it's folks I don't know and they say something like "oh I'm sure that gal has herpes cause she's a slut", well that's not a situation that needs me to butt in on. If it's a group of people I kinda know or know well and they say something like "yeah well when he told me he gets cold sores I dropped him like a hot potato and ran because I don't need that stuff", then I will open up my mouth and say something like - did you know that 1 out of every 3 people has hsv1 orally but most of them never get obvious cold sores to know it. I've actually gotten in some pretty darn good education in conversations like that over the years....lol. Many folks I know have even come to me and asked me questions they are embarrassed to ask others about. I also get folks who come to me for support for their own herpes because they are too embarrassed to talk to anyone else they know about it - sometimes not even their own doctors. I live in a relatively small town where most folks know everyone else or someone related to you at least and odds are you know at least 1 person who works in your doctor's clinic so they aren't comfortable talking about their herpes so they come to me. I'm also always surprised what nurses say at work ( and doctor's ). I had one intern wearing a mask because the child had a cold sore and even though she has them to, she didn't want the child's cold sore to trigger her to get one. I asked her what medical book she read that in because I certainly never read that ....lol. Ignorance about herpes abounds unfortunately. I talk to my patients families about herpes when it's what their child is in for and when appropriate, even reveal my own herpes. spent 2 hours one night with a mother while she cried about it because her husband tries to pretend they don't have herpes and won't talk to her at all about it and she had a lot to get off her chest about it while her 2 week old baby was in the hospital getting a full work up for a possible herpes infection. It's what she needed :) even when I was dating, after I'd have my "talk" with a new man, they always seemed to have loads of std related questions for me....lol. Folks have lots of questions and don't get good answers so finding someone educated to talk to about it, usually triggers all sorts of conversations I've found....lol.

if it's a good joke about herpes, then I laugh, try to remember it and tell it to my friends :) I always appreciate a good herpes joke since there are so few of them out there. I also like dumb nurse jokes and crazy cat lady stories too!

betsy

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PostPosted: Thu Jul 29, 2010 9:24 am 

Joined: Tue Jul 20, 2010 4:02 pm
Posts: 12
Location: south africa
OK! RESULTS ARE IN AND I CHECKED MY PASSED RESULTS, unfortunately no numbers to report:

1st lot of tests (Oct 2009)
HSV-1 + IgG
HSV-2 - IgG
Both positive for IgM **

2nd lot of tests (23/07/10)
HSV-1 + IgG
HSV-2 - IgG
Both negative for IgM

I'm firstly going to say YIIIIIIIIIIIIIPPPPPPPPPPPPPEEEEEEEEEEEEEEEEEEEEEE because I know HSV-2 is the more 'aggressive' virus out of the 2 (most viral shedding, most asymptomatic shedding..)

I have a few questions:
Is a genital HSV-1 infection similar looking to a genital HSV-2 infection? Please describe what it would look like?
If it so happens that I have HSV-1 genitally do the same precautions need to be taken (condoms all the time, anti viral meds)
HSV-1 symptoms genitally, is there a tingle???

Now I know IgG antibodies develop much later than IgM ones SO the fact that I had the 1st test done 1 week after my 'ob' suggests that i had HSV-1 loooong ago (like most of the population has it).
NOW the big question (where i put the **) The fact that IgM was + in test 1 and not test 2 is it because I had an active HSV-1 infection (what looked like my initial ob) and now 2nd test (being - IgM) I do not have an active infection?????? If yes to what I asked is it plausible to say that I had HSV-1 genitally?

Now, I have experienced skin tingles on my bum for the past year,. I don't know if its psychosomatic or if I noticed them only after this whole ordeal but I did have them ALL the time and haven't had them for the past 2 weeks which I find odd?? what does taht mean :(

NOW after all I have asked I ask you one more thing: should I just call this guy ??? SHould I just say "listen I went for a full std screen at my gyno last month and they tested me for herpes, it can back + for type 1, which is relatively normal cos I did have chickenpox and shingles as a kid, but I just want to know, for precaution reasons for us both, if maybe you had it genitally?" OK something along those lines... AND i just realised that one time we were together he had a cold sore on his lip so we didn't kiss and he didn't go down on me, LOL irony!!

Sorry about this mass amount of questions and info but please let me know your thoughts. FINALLY thank you for what you wrote before, its so inspiring to see someone so comfortable with who they are.


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PostPosted: Thu Jul 29, 2010 12:07 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
At this point you still don't have a lot of answers. Visual diagnosis of herpes is wrong 1/3 of the time even by experienced practitioners according to studies. It's unfortunate your provider you saw in october didn't also do a lesion culture and typing instead of just blood work :( At this point, unless you get a recurrence of symptoms that you can get cultured and typed, no way to know if this was just a recurrence of a previous hsv1 genital infection you had or never herpes at all and your hsv1+ result is a prior hsv1 oral infection.

Honestly at this point, I wouldn't even bother discussing this with the partner in question. You still aren't sure of what you had and it's so late now, probably not a lot of benefit from doing so. it's totally up to you though.

I know this probably seems like an unending issue for you :(

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PostPosted: Fri Jul 30, 2010 4:02 am 

Joined: Tue Jul 20, 2010 4:02 pm
Posts: 12
Location: south africa
We couldn't do a viral culture in Oct because they were more than 48hrs old :(

I never had oral HSV-1 all I ever had was chickenpox and shingles as a kid. I have never had a recurrence of blisters before that I could had cultured, however my gyn said if I do I must consult him asap and get it cultured.
So let's say, hypothetically that it is HSV-1 genitally, can HSV-1 be passed from genital to genital if this guy had it genitally?
What does the 1st ob (HSV-1) look like genitally, is it as severe? What is the difference with viral shedding etc?

I know there is absolutely no chance that I have HSV-2 and due to the timing iof the 1st test I obviously had HSV-1 before. But with regards to the IgM test: would it be positive if there was an active infection and negative if not? BEcause first it was + and that was within the week of the ob and 2nd tests it was - .

I spoke with a pharmasist and he said these 2nd tests are good signs.

PLs help with some answers :( Thanks Betsy


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PostPosted: Fri Jul 30, 2010 7:13 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
the igm herpes test is a very flawed test and we don't recommend its use in adults for the purpose of diagnosing herpes. It's falsely positive 1/3 of the time and typically isn't type specific. You really can't ascertain anything from a + igm. You know it wasn't a newly acquired infection so therefore your igm should've been negative.

A hsv1 genital infection tends to present very "classic" with the initial infection.

You can transmit hsv1 from genitals to genitals but the odds of that happening are rather low.

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PostPosted: Fri Jul 30, 2010 3:09 pm 

Joined: Tue Jul 20, 2010 4:02 pm
Posts: 12
Location: south africa
Hey Betsy :)

thanks for the quick reply (as always). Ok, I know the IgM test is terribly flawed and I know my HSV-1 test tested + and is clearly an old acquired infection (shingles, chickenpox) BUT the 1st test my IgM was + and the 2nd was -. All I need to know is IF I in fact acquired an HSV-1 infection genitally (if this guy had it genitally too) EVEN THOUGH HSV-1 was already in my body from the past BBUT NEVER on my genitals could it be that the Igm tested + round 1 because I had an ACTIVE HSV-1 infection? I hope you get my very much gibberish talk! I know when I had the 1st test done: it was more than a week after the 'ob' and that the results were idenitcal to 2nd tests excluding IgM.

I know that I do not have HSV-2 because it has been almost a year since everything happened and the IgG test would have picked it up this time around...

What do you mean 'classic/typical' ob for Genital HSV-1???

I guess I'm still confused because of what happened to me... Any chance I could have just had some sort of infection from unprotected sex, JUST a good old fashioned infection?? I know I keep asking similar questions but my confusion is still here.

So ya, I really want to know if i have GHSV-1 i guess........

Thanks Betsy, you really are great!!


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