Atypical Symptoms / Pretty Sure I Have HSV

[Delome]

Wanted to share my experience and mainly wonder if anyone else had  experienced similar symptoms suspected to be HSV, but it turned out to be something else or tested positive for HSV. The following is my story, please read. 

On Labor Day Weekend of 2012 I had sex for the first time ever. I was drunk, and it was unprotected. I didn’t know what to do to begin with, but the drunkenness made it worse lol. I put the condom on the wrong side so I ended not using it. I gave oral sex to the female and had the unprotected sex vaginally. I did not ejaculate and I had trouble staying erect. I did NOT feel guilt afterward so my initial symptoms were not self manifested. A couple days later, I started feeling discomfort in my urethra and it continued to get worse. I went to the local clinic, and I tested negative for all bacterial infections. Approximately one week after the incident, I developed more symptoms including redness on my scrotum and inner thighs at my crotch. My scrotum and inner thighs then started to burn, and I started developing a stabbing-like feeling in my thighs to the point were it hurt to walk. I mostly laid in bed for two days feeling hot and sore. I followed up with the clinic and they tested me for a latex allergy which came back negative, too. During this time, I did not develop any lesions that I saw, but I knew something was wrong. I do recall some twitching in my legs but nothing unbearable. I suspected the worst and thought I had HIV. I stressed about thinking I had HIV for several months but all my tests continued to come back negative including a test for HSV (Unknown HSV Blood Test) It should be noted that I NEVER had a cold sore as a child. 
 

Approximately 10+ months after the initial incident I was working a summer job and drank a decent amount of soda (I rarely drank pop). Shortly after this, I started feeling pain in my legs, crawling feelings and nerve pain. I started getting pimple like spots on my legs which I then suspected as HSV. I tested again (Unknown Blood Test), and I recall still being negative. It should be noted I only had the one sexual encounter up until this point. My Dr. knew I was a wreck since I kept going back to her thinking I had HIV. She agreed to let me try a suppressive prescription of a generic Valtrex (fairly large blue pill). I continued to take the prescription for a year. I really don’t think it helped all that much as I was still feeling “prodrome” in my leg with continued spots. 
 

Approximately two years after the sexual encounter (Still the only one up until this point / didn’t want to infect anyone), I started getting twitching on my back and arms. I noticed I was getting the same spots in those areas, too. Spots are usually alone and not clustered with a red base and white-like head. They turn yellow / brown fairly quickly and never left as scar but would leave a red blemish. I had the spots tested by dermatologist and they were not bacteria related. I continue to get these spots with prodrome, including on my face at times now, too. It’s been really frustrating and depressing. 
 

In April of 2018, I met a woman and began dating her. She shared she was HSV2 positive with a confirmed test. We had tests done prior to having a sexual relationship. I got tested and was negative for everything too, including HSV1 and HSV2 (IGG Blood Test). I was probably off the anti virals for approximately one year before the test in April of ‘18. 

I still continued with my symptoms though and got one of my spots swabbed in September of 2018 for HSV and Bacteria. It all came back negative, again. Dr. thought it might be  
folliculitis, but the medication didn’t work. 

Fast forward to now, I’m still getting these outbreaks all over with the prodrome including the tingling and nerve pain. I’m with the same woman from 2018 and she now gets spots on her chest, face and back at times that itch but are much milder. She sometimes complains of a stabbing pain, too. Since she was HSV2+ before our relationship I know it’s not that, but I’m suspecting I have a really bad case of scrum pox / herpes gladiatorum caused by HSV1. 
 

Any thoughts, suggestions, other similar diagnoses or symptoms? I know users named @glasshalf and @Whoknew?had mentioned similar symptoms and test results with no answers. I can’t find on here if they were ever diagnosed with HSV or anything else. Thanks to all that read and any future responses. God Bless. 

Edited March 16 by Delome

[WilsoInAus]

Hi @Delome and welcome to the website.

I’m sorry you’ve had issues over the years but more sorry that you’ve lived with a fear surrounding HSV. There’s little more to say than you’ve hit no reason to suspect herpes is the cause of any of the symptoms you have described. That is not what herpes does or could ever aspire to.

This concern seems exacerbated by your partner’s dots. However even that’s unfounded and you want to know the key reason why? A person with HSV-2 has immunity from a HSV-1 infection. So it can’t be that, let alone the fact that it sounds nothing like HSV. 
Your partner sounds like a typical carrier that applies to over 95% of carriers - a lesion now and again.

Think about it, to be in such a tiny proportion of people with real bizarre symptoms and test negative on all tests just isn’t feasible and there are far more important of life’s issues to apply your mind to.

[Delome]

Thank you for responding. I plan on going to a new dermatologist soon to get checked out. Hoping it’s some weird fungal thing. I was also unaware of HSV2 infection being a protection for HSV1.