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Atypical Symptoms / Pretty Sure I Have HSV


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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 by Delome
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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.

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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.

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    • CHT
      Hi "Jeremy"..... I agree, the topic of your HSV status does not need to be something you disclose too soon in a developing relationship..... get to know each other first....see how it's going and as it progresses, then the HSV issue will naturally need to be revealed.... it's my personal opinion though that before there is any sexual encounter you ought to disclose your HSV status.... I know some will disagree with me on this but, I think it is morally wrong not to disclose first.  This can be a make/break situation for most people but, again, I feel it is simply wrong not to give the other person the whole story since your decision not to disclose could put their health at risk.... that is simply not an option in my opinion.  Looking back to my "pre-HSV" life I most certainly would want my partner to disclose their HSV+ status before intimacy so that I could make my decision as to whether I want to take that risk or not.... 
    • Jeremy Spokein
      Thanks, CHT. I appreciate the feedback. The whole trauma of going through this has led me to figure out a lot about myself and my attachment wounds, so I'm taking courses to come out of this better. This girl really was my dream woman in so many ways, it's been the hardest heartbreak to deal with ever. I'm truly in a lot of pain, but using the pain as fuel to launch that new business and work with coaches. I also opened up to my family about HSV, so my parents and sister know now, and they were very loving and accepting of it. Since opening up about it, I feel way better around this thing. After opening up, I also found out that some mutual friends in our family have discordant couples who are married with children, so HSV hasn't stopped them from living a loving life. The thing is... all of these couples I mention did not disclose until 6-8 months into the relationship. So now I'm thinking it might be better not to disclose until I know things are very serious. I'll of course stay on the medication and use protection, but maybe this is a better route than disclosing upfront and scaring women off.
    • WilsoInAus
      Hey @Lcj987 and welcome to the website. You can be sure that isn't HSV-2, looks nothing like it. It is much more likely to be folliculitis or inflamed fordyce spots.
    • WilsoInAus
      Hey @JackThrowAway herpes causes an outbreak where it enters the body first and maybe a progressive spread. If it doesn't cause an outbreak at the entry site then it won't cause one elsewhere, it also won't 'jump' upon infection - it would be more likely that the lesions are continuous from the penis to the anus. Nevertheless, testing trumps symptoms or any interpretation of symptoms. The correct conclusive result arises when: you have a positive swab; or An IgG HSV-2 level over 3.5 (Herpeselect test).
    • Lcj987
      Slept with someone unprotected, roughly 2 weeks ago now. I felt generally unwell the couple of days after but I’d been drinking the whole weekend and didn’t have much sleep either of the days of that weekend so put it down to that. 6 days after I noticed these spots appear on the shaft of my penis. Along with symptoms of discomfort in my shaft in the couple of days prior to them appearing. No pain when urinating at all that I have noticed. They don’t hurt, itch or tingle and they don’t have fluid in from what I can see or feel if I squeeze them and have never burst? I went to a sexual health clinic to get checked up, they took bloods to do a full test and looked at the spots but said they saw nothing that concerned them but I’m not sure about that, any advice? The smaller spots under the shaft are just follicles I had diagnosed years ago and non-sti related.
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