symptoms for 2 years, negative testing

[OverthisParticipant]

My question is why do I have very obvious painful lesions on my vulva every month or more depending on my diet for 2 years and still have negative blood tests for HSV1/2?

I was exposed to whatever this is two years ago this month. I have had a partner one night who had positive blood test for HSV1. He has only seen what he thought were symptoms on his penis one time. He has never had a cold sore. His doctor never saw the symptoms but did a blood test for both HSV1/2. So after one night together with a poorly fitting condom and no visible symptoms on him I turn up with symptoms within a week(that I thought was yeast that resolved in a couple days) then 10 weeks later I saw my first set of lesions. This break out last about 14 days with two cycles of 2 or 3 tiny lesions. I’d say my symptoms are minor compared to some of the stories and descriptions I have read. Never the less they are frequent, almost every month. The longest I’ve gone w/ out symptoms is three months. I’ve had blood tests done three times and one swab test and ALL came back negative for both HSV1/2. My last NP told be there is no way I have herpes if the blood test is negative and she referred me to your clinic for further advice.

My lesions are never larger than a mm in size I think. They are always red and painful. Often the break open and bleed slightly. Some times they don’t. I wouldn’t say it looks like a blister except for when they open up…then it has an obvious tiny hole. It’s usually one or two lesions total and typically alway right side of vulva. Once or twice I’ve had lesions vaginally or on the left side of the vulva. I have taken acyclovir given to me and then later prescribed based on the description of lesions. If I take acyclovir at first symptom it resolves w/in a few days. Sometimes I have another outbreak within a week after. Not always.

After being convinced that I do have hsv1 vaginally I then went into a realationship with the exposing partner. I have had no changes in symptoms and he has had none.

Now I am single and I don’t know what to do any more. Obviously afraid to start a new relationship without an answer. I’m completely beside myself and don’t understand how any of this is possible based on what I’ve read. Please advise.

[Terri WarrenKeymaster]

I am concerned about the lesions that you describe. The antibody tests for HSV 1 miss 1-2 out of 10 cases so it isn’t the best. However, you are having a lot of outbreaks if, for some reason, you actually do have HSV 1 infection.

My recommendation would be to get some PCR swabs, either from your doctor or form us, and swab the bumps when they first come up. The PCR is very sensitive, far more than the culture. After you swab at home, drop the swabs back at your doctor’s office or you can ship them to us and we will get them to a lab. Swabbing when you first notice symptoms is far better than waiting for an appointment, and losing virus over time in the process, making the testing less reliable.

The other thing you could do is get a herpes western blot test – it is far more sensitive for HSV 1 than the ELISA test traditionally used.

You’ve got two more questions – go for it!

Terri

[OverthisParticipant]

Thank you for the help. I knew there had to be something else that could be done to sort this out. I don’t have any other questions at this time. I will call the clinic for an appointment tomorrow.

[Terri WarrenKeymaster]

Sounds like a plan.

Terri

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