HSV Frustration

[jaybird791]

First I'd like to say thank you for this service.  As I continue to educate myself about HSV, I have found your posts most interesting and therapeutic. They're therapeutic because, it gives me 1 oz. of hope that I don’t have it based on most of your responses.  Either I don’t have it, or I have the worst luck in the world, and a very atypical case that contradict numerous facts posted on this site.  But if I put all the pieces together, it has to be herpes right?!!

I had a one time encounter for 60 seconds where I caught Chlamydia.
Yet, most exposures don’t lead to infection and 1 time encounters =very low risk for herpes.  Perhaps my risk is increased bc she had Chlamydia (maybe co-infected cells?..does this make sense?)
I’ve had a garden variety of symptoms that you could take right out of the herpes handbook.  Never have had blisters that crust and heal.  They just disappear after a few days.  3 or 4 blisters around my shaft and one place in particular is sensitive and one that tingles/itches intermittently almost daily.  This presentation doesn’t “sound like herpes.”  
And they seem to come and go regardless of antiviral medication.  Meds may be helping slightly, but not completely.  In fact when I have stopped and restarted meds, the blisters have appeared at times.  The recurrences are happening about every 2 weeks, going from one site on my penis to the other.  The two outbreak locations have remained constant.
I tested negative at 16 weeks (.92 for HSV1 and <.9 for HSV2) but have been on lots of antivirals.  Yet general consensus among herpes experts is that antivirals don’t delay seroconversion.  Am I one of the 5% that doesn’t seroconvert?
I also have had a burning sensation from my tailbone to my perineum for 6 weeks now.  It subsided at one point for 4 days. I've tried fluconazole and topical antifungals with no success.  Baby powder helps.

What is this?!!!!!!  Blueskies' situation seems similar, although more severe.  Where should I go from here?

[Edward W Hook, MD]

Antibody response is a reflection of the immune response.  The studies report that 93% of persons who acquire herpes develop a positive HerpeSelect test at 3 months.  The Western blot which the gold standard can actually take longer to develop a positive test result (for a number of complex, biochemical reasons) and in VERY rare cases when people have taken suppressive therapy continuously since diagnosis can take up to a year to become positive.  These are the exceptions to the rule (the 1 year figure reflects a single patient in the thousands and thousands of tests done at the University of Washington) which make up less than one 100th of 1%.

My sense is that you have been wrestling with this problem for close to 6 months, am I correct?  If so, stay off the antivirals for a month to be sure and get a Western blot, committing to believe the results before you even order the test.

Hope this helps.   EWH

[jaybird791]

Thanks for your remarks.  They were helpful.  

I started antivirals at 4 weeks post incident when I noticed a few miniscule whiteheads on my shaft.  This was after I got over a sore neck/mild headaches from weeks 1-3 and a 2 day fever at the end of week 3.  

1) Do you think antibodies would have developed by this point if it was herpes?

I think this has been asked before on this forum but I'll ask again...
2) Is there any correlation between antibody development and immune response?  Meaning will my immune system fight the virus better if I stay off antivirals and let my system develop antibodies?

I'm stopping Valtrex today and I'll let you know how I feel in a week or so...

Thank you.

[Edward W Hook, MD]

I have reviewed your 42 prior interactions with Terri and me and am clear on how frustrating this can be.  I would also point out once again that there is no proof that you have herpes, that your case has been reviewed by multiple experts both through on-line services and by health care providers and that, as a group, while they agree that your concerns have some elements of genital herpes, when all is considered as a whole, the evidence does not support the idea that you have herpes.  That said, I think that it is important to clarify what may be one misperception that could potentially be a source of confusion.  Emerging data now show that in persons who start antiviral therapy soon after the onset of herpes CAN delay development of both specific blood tests such as the HerpeSelect and the Western blot assay.  Hence it is important to consider this.  As Terri as suggested, this could be delaying your development of antibody.  Getting off suppressive therapy for several month before re-testing with a Western blot may help to resolve the uncertainty that this emerging data introduces to your situation.  

As for your persistent perineal discomfort and multiple recurrences, while I realize this is not what you want to hear, I must point out that a clinical diagnosis of genital herpes made by experts is wrong 20-25% of the time.  This is because there are other genital dermatological processes.  In your case,  there are many unusual characteristics to your problem which if anything,  make it even more important to consider that this is not herpes.  If this is the conclusion, the best way to address it is to find a health care provider in your area who is willing to work with you to sort this out by allowing you to come to be seen any time that you have recurrent symptoms so they could be evaluated.

Hope this helps.  EWH

[jaybird791]

I will get WB test, but let's just assume it's positive.  A number of other posts online describe symptoms similar to mine, with very little success from Valtrex.  Some pieces to the puzzle are missing here.

I appreciate your help and highly value your expertise.