super constant HSV1

[hsv1unsure]

Dear Dr Hook or Dr. Hansfield,

Had exposure to someone with a coldsore a couple of years ago and, ever since, have had pretty typical herpes symptoms. I get reoccurances that occur in the exact same spot (give or take a bit) and I usually know when its coming because the area will itch and feel raw for a bit. Pretty typical sounding, I know.

What has really got me scratching my head is that I've had 2 negative cultures and 1 negative PCR of the area (did it within 1-2 days). Also have been IgG negative. And the other thing thats got me really confused is that I have been having outbreaks every 4 weeks which I understand is a lot for HSV1. Even weirder, this past month, I've had 4 separate "outbreaks." All occurred in the same spot, got better, and went away. I had an "outbreak" on Monday, it went away, and its back 4 days later! That seems weird to me from what I've read. This has also happened with me being on Valtrex (500mg/2 a day- 1g total). I understand it may take higher doses to suppress HSV1, so maybe I need more...?

1) What do you think about all of this? I am torn by what seems and feels like herpes and what the cultures say. Should I get another culture?

2) In your professional history, have you ever known of a patient who had back to back GHSV1 episodes like what I've described?

3) Should I increase my dosage of Valtrex (1000mg/ 2 a day)?

I just want to find a way to get all of this under control, no matter what the reason even though herpes is an upsetting thing, I already (and have already) feel like I have it.

[Edward W Hook, MD]

Welcome to the Forum.  From the sound of things you do not have herpes.  While we certainly see negative cultures and PCRs from time to time, after 3 tests and a negative serological test, it is unlikely that you have HSV. Furthermore the natural history of the process you are experiencing is atypical.  There is a caveat however.  Your cultures/PCR could be negative because you are on valacyclovir and your IgG test could also be negative if you have been on the valacyclovir ever since your initial diagnosis (it can delay antibody response).  Even with these qualifiers however, it is more likely than not that you do not have HSV, particularly if you have never had a positive test.

Typically valacyclovir at the dose you are taking it should have some effect.

What to do. For starters, since it doesn't seem to be doing much good, rather than increasing your valacyclovir, I would suggest stopping it.  AT that time with another recurrence you can get another test.

Finally a couple additional comments. It sounds like most of your symptoms occur when urine hits the area.  If so, that is more likely local irritation than due to the process itself.  

Secondly, there are other processes which might cause irritation in the area.  I would suggest asking another opinion if you have not done this.  Local trauma can do this, as can chronic fungal infections and other dermatological processes.

Hope this helps.  Let us know what happens.  EWH  

[hsv1unsure]

I should have been clearer in what my "outbreaks" looks like. They feel like a cut, and burn when urine runs over it and hurts to the touch. Its hard for me to see it, but sometimes it looks like a sliver and sometimes its just a bump/ abrasion. Thats also what I've told it looks like by the drs/nurses that have looked at it. Many said it sounds typical of herpes while others feel I should believe my cultures. Soo torn..

[hsv1unsure]

Thank you so much Dr. Hook for your comments. I have only recently been on Valtrex on a continual basis. I have been sure to not be on any suppressive meds when I get my cultures, and have only been on valtrex daily recently. I've also had multiple negative IgGs (and 1 WB) without being on valtrex (I wasn't on it, except maybe here and there, sporatically). I've been very cautious about that.. hope your opinion stays the same...

[Edward W Hook, MD]

Thank you for the additional information. With this perspective it is even less likely that this is HSV. I would suggest that your task is now to figure out what might be going on.  Take care.  EWH

[hsv1unsure]

Hi again,

I will definitely take your advice and continue to pursue this without the valtrex. I’m wondering though, have you ever seen anyone with ghsv1 who had back to back episodes (like every 5-7 days?). Is that even possible? What would cause the sudden increase in OBs if this is what it is?

[Edward W Hook, MD]

No I cannot say that I have seen anyone have such rapid-fire, back to back recurrences.  EWH

[hsv1unsure]

Ok, final question- promise. I only am still asking because I can't get this issue to stop- it comes back every week, same spot - and I can always tell b/c its preceded by local irritation and itchiness- and sometimes my butt aches a bit. Seems a lot like herpes. Anyway, I had a 2nd PCR done last Wednesday which was negative.. I did not take Valtrex that day, but I had been taking it semi-regularly as of the Sunday before the PCR (so 3 days before). Would the fact that I was semi-regularly taking Valtrex as of 3 days prior to the PCR affect my test results?

[hsv1unsure]

Any thoughts on this Dr. Hook? I’d really appreciate your final thoughts on my very last question.

[Edward W Hook, MD]

There is less and less to suggest that this is HSV.  You need to work with a dermatologist to get this sorted out but I would not spend a lot of time worrying about HSV. EWH

[hsv1unsure]

Just wanted to follow up and let you know that I had a biopsy done and learned that what I have is "Spongiotic Dermatitis, Sub Acute Type." My hope is that this is correct and will be following up with a dermatologist. I received another PCR of the area for herpes which was negative. I'm hoping that I can move toward resolution now. Thanks again for your help!