Please help me Grace!! :(

[JustPuzzled]

I've been having recurrng genital bumps/ulcers every couple of months since Jan this year. I posted on the expert forum a few months ago if you'd like to review it. I had 3 IGG blood tests done. 10 weeks(NEG), 16 weeks(NEG), and 6months(NEG)!!. I have been seen by 5 different OBgyn Drs. I have been told by a few it may be folliculitis. I got really comfortable with this one Dr. who was really familliar with my problem and she really believed that the cause of my genital lesions was indeed folliculitis and she didn't think it was herpes. Well low and behold I got another bump on my labia so I called my Dr's office right away so i could get in to be cultured well....she moved to another state :(. So I got in a day and a half later with this male Dr. He reviewed my charts and said "negative.negative.negative.." he then looked at the now ulcer and said it looked herpetic to him and he wrote me a prescrption for Valtrex. I was devastated. I felt so brushed off and he just seemed so sure he didn't even want to do a culture >:(. I still made him do a PCR test on the sore and it was again negative.::sigh::

I guess my question is: Should I assume this  Dr. is right despite all of my negative blood tests and negative cultures?
I just want a definate answer..Like if I really am hsv2 pos, why can't just one test tell me? It feels like a cruel joke :(. I just want some closure. I would love any advise or guidance on this whole thing. I'm so upset and don't know what to do anymore. Thanks in advance!!

[gracefromHHP]

At this point I recommend making the appointment with the dermatologist and establishing yourself as a patient. You can go to the appointment in november and talk about what has been going on. Be sure to take along copies of all your testing you've had done too and their results so that they can review them and not have to waste more time ( and money ) by repeating any blood tests and such .  Once you are established as a patient then when symptoms reoccur, you can be seen within a day or two ( they should be keeping appointments open daily for folks like that ).  So the first appointment won't be very helpful if you don't happen to also have symptoms at that time but it's a step in getting better answers :)

I disagree that taking valtrex will be the test for you. Your symptoms normally clear on their own so if they clear while taking valtrex, it doesn't mean anything. make sense?

Only about 2% of folks won't test accurately on the blood tests. You could be one but odds are that you aren't. At this point never, ever, ever accept a visual diagnosis of herpes from anyone - make them do lesion cultures of active symptoms and prove it's herpes!!!!  Your multiple negative tests and your negative pcr done recently just keep showing that indeed this isn't due to herpes.  Many other things out there that can cause symptoms similar to herpes that you now need worked up for.

Hang in there - I know this has been incredibly frustrating for you having symptoms and getting tested and tested and no one being able to give you a for sure answer :(  

grace

[JustPuzzled]

Thank you so much for your reply Grace! It means alot! I just want to say I was told by my other Dr. to see a dermatologist should any symptoms return. This time I tried to get in with a dermatologist to explore other causes of my genital symptoms. However, every dermatologist office I called was "booked through Nov." some even booked til next year! I couldn't believe it! I even told them about what's been going on with me but still had no luck getting in right away when I had this new lesion. So I was stuck going back to the gyn.

Wasn't too happy with this dr. because he completly disregarded everything the other dr told me and still suggested herpes and said it wasn't folliculitis despite what she said and all of my many negative tests(blood and cultures).

I am concerned that maybe I'm one of those people that don't come up pos of antibody tests. I don't know what to do. I'm taking Valtrex now and I guess that's the real test? If I get anything else within a couple months I can be certain it's not herpes? But if I do get more symptoms how can I get in to see a dermatologist right away?

[gracefromHHP]

A negative pcr and multiple negative blood tests means that it probably is not due to genital herpes.  A visual diagnosis is wrong 1/3 of the time even in the best practioners who see herpes often.

At this point it's time to pursue this further with a dermatologist to try to figure out what is really causing your symptoms.

grace

[Verysaddude]

I don't think you can assume he is right....Its just hard too go against all those negative tests ...

it would be interesting to see if Valtrex helps....