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National Cervical Cancer Coalition


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PostPosted: Fri Mar 12, 2010 1:27 pm 

Joined: Thu Mar 11, 2010 9:48 am
Posts: 2
Location: United States
In December of 2007, I went to my university health on-campus clinic because I had severe pain and discomfort on the right side of my vulva. As I am reading my records, the nurse practitioner whom I saw wrote that I had "3 very tender raised, whitish vesicles on edge of right labia minora. Also to have shallow fissure just posterior to vaginal opening." She said that they looked like HSV -- probably type 1 because prior to this appointment, I had oral sex with a then-boyfriend. To make sure she was right, she did a progressive herpes simplex virus culture on the "vulvar vesicle." The results came back POSITIVE for Type 1 and NEGATIVE for Type 2. I was obviously devastated, but since then have come around and have accepted it. Since this initial outbreak, I have had no other outbreaks.

Last month (February of 2010), however, I thought I was experiencing my second outbreak. It felt very sore down there and tender. I was also experiencing some thick, white discharge. I called my gynecologist at home and found that I probably had a yeast infection. I decided to make an appointment with my gynecologist at home, though, just to make sure it was not another outbreak. When I saw my doctor (5 days after my 'outbreak'/yeast infection), he said that I had no herpes lesions anywhere, and just to make sure that I did not have HSV-2, he wanted to do a blood test. After getting those results back, I found that the test was NEGATIVE for BOTH type 1 and type 2 antibodies. He could not explain that, so he wanted to look at my records from the university health services.

After university health services sent my current gynecologist my records, he expressed to me that judging by the notes, I probably did have HSV because the sores were described as such. However, he still wanted me to get another blood test to confirm this. So, right now, I am currently on spring break. Monday, March 8th I had more blood drawn. (Another type-specific blood test for HSV 1 and 2 antibodies). My results came back NEGATIVE for BOTH types again. My doctor called me on Wednesday, March 10 to tell me these results. He said that the only thing he could think of is that my viral culture (done in 2007) was contaminated because I SHOULD have antibodies. I want to believe him so much, but based on the research I've done (telling me that viral cultures are the most effective) and everything I had gone through when I was first diagnosed, it is hard for me to believe that I was wrongly diagnosed.

So, my questions are these: could there have been a mistake with the viral culture? Do mistakes like these happen very often? Shouldn't I have antibodies 2 YEARS after being diagnosed initially? I was also reading up on the Western Blot blood test -- should I have more blood drawn and have it sent to get that done, because I've read that that is 99% accurate? I'm just very confused because I know what I had before, I was diagnosed and put on Valtrex for 2 years. Now, I'm being told that I don't have it. What is the truth? Can I ever find out to be certain? And if I just have to trust in the blood tests, am I obligated to tell my future partners that I, at one time, was diagnosed with HSV 1? Any help would be GREATLY greatly appreciated. Thank you in advance!


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PostPosted: Fri Mar 12, 2010 3:45 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
welcome to the board! You've come to the right place to get the exact answer you are looking for :)


You had a + lesion culture for hsv1. You know exactly what you have where and it's unfortunate the providers you've been seeing aren't as familiar with herpes blood testing as they could be.

So why are your blood tests negative? Well because unfortunately, even our best blood tests for herpes that we offer still miss 1 out of every 10 hsv1 infections and that's the best ones. the not so best ones miss almost 1/2 :(

going to be seen 5 days into things, if you were having a herpes recurrence, odds are it was almost all healed anyways. recurrences don't last near as long most times as the initial ob does. did they properly test you for yeast and bacterial vaginal infections at your appointment or had you already self treated?

keep asking questions!

betsy

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PostPosted: Fri Mar 12, 2010 4:21 pm 

Joined: Thu Mar 11, 2010 9:48 am
Posts: 2
Location: United States
Thank you for your prompt response!! I'm just still really confused. Are you saying that my blood tests that tested negative for both kinds of antibodies TWICE now are wrong and that I should just rely on the culture that was done 2 years ago? When I went to the doctor for what I thought was an recurrence, they tested me for all kinds of infections (he read the list to me and it was long). Also, I had begun self-treating myself with Monistat 3 days prior to the appointment.


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PostPosted: Fri Mar 12, 2010 4:55 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
correct - you go with the lesion culture results. the blood tests for hsv1 aren't as useful .

betsy

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