Let me sum my experience to date, it sucks. Here is my story.
I use a low dose of Doxycycline antibiotic for cosmetic (acne) reasons and have done so since I was 17 and I'm now 26.
In late June I had been feeling itchy around my abdomen with a slight rash for about a week or so and one night a spot popped up on the glans (head) of my penis, just a small single spot, slightly pinker than the appendage itself. I went to the ER immediately and both the nurse and the doctor assessed the slight itchy rash as a fungal infection, tinea versicolor, treated with an antifungal pill and the spot visually stating it was probably irritation and leave it be.
Two weeks later, the itching had not ceased and the spot was still there so I go to a second ER (I travel the USA for work and work at night, hence why ERs are usually my unfortunate medical option.). The doctor dismisses both my issues as skin irritation and prescribes an antihistamine and to see my primary care doctor. My partner is also convinced my years of Doxycycline caused my reaction so I stop using my antibiotic just to see if it helps any.
I go into my primary care doctor's office a week and a half later. The night before a new spot appears to be forming in the mid-right section of the glans I noticed in the shower. I had tried multiple OTC ointments both antibiotic and cortisone a few days prior and the new spot stung when soap touched it in the shower...My primary care doctor examines me and says it could be either syphilis or herpes but he would bet on syphilis since I felt no real pain and had no fever. He draws my blood but DID NOT take a swab/culture. The next day he calls stating my blood tested negative for syphilis but I was positive for HSV 1 and negative for HSV 2 and starts me on Valtrex as he believes this is genital herpes.
I start Valtrex and within days I have large itchy lesions popping up all over my anogenital region and my doctor said over the phone more lesions were likely to occur starting outbreak/suppression treatment. After 3 weeks, nothing seems to be getting better as these lesions are everywhere getting worse along with the rash now reaching to my abs and it itches nonstop. None of the lesions hurt to touch or appear to be breaking open weeping fluid from what I've seen, they just itch really bad.
At week 4, I ambush my doctor without calling and the Physician Assistant agrees to work me in short notice. She decides to do a culture of the sores. She poked new larger sores that further developed on the glans, my foreskin area, the base of my penis and my scrotum but when she pokes the sores she is only getting blood. No other fluids are visible and she said that was unusual for herpes.
At week 5, I go in for my follow up appointment and the first thing she said to me was "You tested negative for herpes on your swabs. Frankly, I don't know what the Hell it is." She brings in an older doctor I've never met before and they both visually look at the lesions on my penis and on my buttocks, which have now started to migrate past my thighs to my knees and past my navel. This doctor said to the P.A., this looks to be a staph infection and they write out a script for Minocycline and antibiotic ointment. This was yesterday.
Today, I called my doctor's office and the P.A. said “discontinue antivirals and [she] is sure my swabs [are] negative for herpes."
My question is this, do I have genital herpes? I have no idea what made my usual primary care doctor so sure visually it was herpes, not conduct a swab and to go by a positive result of HSV 1 by blood test and negative for HSV 2 and only to be told weeks later my swab/cultures from being poked in 4 different genital lesions were negative for herpes 1 and 2.
I don't know how to proceed since these lesions have made an itchy weird sight of my penis and genital region. As I understand it, HSV 1 is the common version of the virus found in nearly all humans and found in the upper ganglia in 80% of cases and I tested negative for HSV 2 in the swab and in blood testing.
How should I proceed? A diagnosis for genital herpes like that seemed pretty drastic.