I have over the span of 20 years had both negative and uncertain positive test results, and am confused and somewhat frustrated.

Once, twice at most during a year, I get those painful clusters of blisters, and they often grow into one larger one and stay for a week. I have had them swab cultured at least 5 times (once when the tech said if this is a positive it will be a significant positive) and all have come back negative. In 1991 I had a herpes titre blood test which came back "low positive." Since the swab was negative, the lab doc said that it was probably some "cross-talk" with the chicken pox that I had as a child, and that since the swab was neg (and it was a good swab--the "it would be a significant . . ." swab) that it was probably not herpes.

I had also been concerned about sores in my mouth, but was convinced by a SW Med School expert that they were not HSV 1, because they happened virtually every other week when I was in grad school (stress?, but that is one of the causes of an outbreak). When I asked what it might be, they said that there were other kinds of viruses that could produce these symptoms, and that to find the exact one that it was would be like trying to swab a toilet bowl, i.e. voluminous possibilities.

I have a genital outbreak about once a year, twice at most. Occasionally, I get very sore and swollen on either side of my testicles for about a day (not the usual case, but happens maybe once every 2-3 years), and a rash near the bottom of my penis, which felt better in about 2 days. That happened this last week, and today had more small (so far) pimple like things on the upper-under part of my penis where they always appear. I am thinking about having them swabed and blood tested again, because this drives me crazy each time it happens.

Neg. swabs, not certain blood tests. Any thoughts on what this is? Is it likely to be anything else?

Wow, MTViewer, I can't blame you for being frustrated and bewildered. You sure sound like you have all the classic symptoms, yet one would think the testing would have showed something more distinct by now. Having said that, the swab tests are notorious for returning false negative results and I've heard of people who've gone for years before finally getting a positive result. Unfortunately, it's not just the tissue that's being swabbed that can make the difference; it's also how the swab kit is handled after the swab is taken. It must be maintained at a certain temperature, etc., etc.

You might find http://www.herpesdiagnosis.com an interesting site (in our Resource Links) as they talk in detail about the different kinds of tests available (both swab and serology) and the variables that can affect the results. You might try referring your doc to it and discussing a testing strategy, like hunting down a lab that can process a PCR DNA swab test, which is more sensitive and therefore more accurate.

But you can't really rule herpes out based on a negative swab test. You can only rule it IN when you get a positive result. Your doc might be right about the "crosstalk" (lol cute term). If you haven't used the Western Blot blood test, you might try that and double check with your lab to be sure they're not altering the test in any way (see herpesdiagnosis.com for info about this).

You might also consider writing to Dr. H. at herpes.org (also in our Resource Links) and see if he/they have any ideas or suggestions. Good luck! Let us know how you make out.

TheOneInFour