[Question #6571] Persistent Genital HSV1 or is it HSV2?

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67 months ago
Tested Negative for EVERYTHING except HSV1 via Igg and WB Test. Last exposure was on December 26, 2018. 
  • Symptoms keep reoccuring on scrotum, pubic region, buttocks and back of thighs. Take Valtrex but only helps a little. Symptoms intensify every 2/3 weeks and subside however, they're always there. Thought Valtrex would help much more. 
  • Spread my infection to my face and eyes. My face and eyes feel VERY irritated, burns and tingles. I have to keep using eyedrops. I cannot live a normal life. 
  • Tested for Western Blot on May 8, 2019 (approx. 4.5 months after exposure) and HSV2 came out negative.

  •          I tested this past December (nearly 1 year after exposure) for HSV2 Igg and Negative again!

  •                 1. If I already had HSV1, why did I contract it again?!

  •                 2.    Could this be HSV2 and I don’t test positive for it???

  • 3.    I thought HSV1 did not reoccur in the genital region?? This has been reoccurring every 2/3 weeks with intensity since I got it and in between I still feel symptoms but not as intense.

    4.    When you say that HSV1 does not like the genital region, do you mean just the penis itself? Because my scrotum, pubic area, and buttocks/thighs is where I feel my strong symptoms so I’m wondering if that’s why I feel persistent, strong symptoms within these areas.

    5.    How long do I have to be off Valtrex to get an accurate test? Shouldn't I have developed antibodies, even with antivirals?

    6.    Will the outbreaks subside on my face as time goes on?? This is the worst to be honest. I can’t concentrate and it feels HORRIBLE on my face. My eyelids always feel ‘raw’ and mucuousy, the way sores on lips look when someone gets a cold sore. 

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Terri Warren, RN, Nurse Practitioner
67 months ago
With a negative western blot, you can be assured that you do not have HSV 2 so we can take that off the plate.
So when you say that you are having lots of symptoms, what exactly are your symptoms?  If they are lesions, then you should have them swab tested to determine that your lesions are actually due to HSV 1.  But I sense from your post, and perhaps I'm wrong, that you aren't having lesions, that you are having some sort of irritation, burning and tingling but NOT lesions.  You are assuming that you have genital HSV 1 AND you are assuming that you have spread this to your face and eyes, but there is just, as far as I know, no evidence for this assumption UNLESS you have positive swab tests from these locations.  Let me ask you this:  when did you start taking Valtrex, how long have you taken it, have you had periods of time off of Valtrex since December of 2018 and how much do you take daily?

Terri
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67 months ago
I took the WB Exam on May 8, 2019 (Approx. 4.5 months after last exposure). Prior to that, I did NOT take any Antivirals. Should I take another WB now since it's been so long to get a more accurate result? I've taken Antivirals on and/off to see how my body reacts. I was prescribed Valacyclovir HCL 1 Gram (take 2 a day). Seems that when I take it, it does help a bit but when I'm having a strong reoccurence "outbreak", it doesn't do much. 

I don't have obvious lesions. I do however, get lesions on my forehead that look like pimples but I know they're not since they reoccur in the same spot and some look like they're clustered. Beneath my scrotum, i don't get any lesions but it hurts like I have tiny cuts; i only got one lesion at the beginning but they all dismissed it as a pimple but one nurse at a clinic said it was a wart. Haven't had it since. I do sometimes get these irritated red small lesions on my pubic area but they don't appear often. I showed them to my doctor via phone since it's difficult going in during the most obvious symptoms but he dismissed them. On my buttocks and upper back thighs I get pimples but I'm sure they're lesions since they keep reoccuring often and HURT.  

On my face, the skin around my eyes and forehead has become very wrinkly/shiny and feels like my skin is alive. I keep getting the tingly, irritated sensations. I've read on several forums where some people experienced the same things. Seems to me that I did indeed catch another strain of HSV1 and spread it to other parts of my body. 

I started taking the antivirals after the WB. I would stop and take other stuff to see how it helps such as a supplement that contains Lysine. It helps, however just like  the antivirals, when my reoccurence is strongest, nothing really helps much. 

I don't let my mother or other family give me kisses on the cheek since I don't want them to catch what I have. My mental health has suffered greatly. I don't understand why better medications or suppressing vaccines have been created yet. This feels horrible. My life has come to a hault and I don't know what to do. I'm afraid of giving this to a potential partner. 

You mention lesions as an important indicator but I've read that NOT everyone gets the classical lesions. Could you please answer my questions from my initial question? Thanks. 
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Terri Warren, RN, Nurse Practitioner
67 months ago
About half the population of the US has HSV 1 infection - extremely common.  I think you have become probably overly worried about transmission of this virus to others

  • 1. If I already had HSV1, why did I contract it again?!

I don't know why you are so sure you contracted it again - you don't even know where you are infected, at least I don't see any where where you have had a lesion swab tested to know where this virus is. 

  •                 2.    Could this be HSV2 and I don’t test positive for it???

The western blot picks up 99.9% of HSV 2 infections - I am not worried that whatever your symptoms are, are related to HSV 2.

  • 3.    I thought HSV1 did not reoccur in the genital region?? This has been reoccurring every 2/3 weeks with intensity since I got it and in between I still feel symptoms but not as intense.

  • What evidence do you have that you are infected with HSV 1 genitally? Perhaps I have missed something

  • 4.    When you say that HSV1 does not like the genital region, do you mean just the penis itself? Because my scrotum, pubic area, and buttocks/thighs is where I feel my strong symptoms so I’m wondering if that’s why I feel persistent, strong symptoms within these areas

  • I mean that HSV 1 in the genital area recurs infrequently and sheds infrequently.

  • 5.    How long do I have to be off Valtrex to get an accurate test? Shouldn't I have developed antibodies, even with antivirals?

  • If you didn't start Valtrex until you took the western blot and you waited at least 12 weeks to do the test after a concerning encounter, you don't need to be off Valtrex and you do not need a western blot again. You don't need to have people stop kissing you on the cheek for fear of transmission unless you have an active cold sore on your cheek which is unlikely.

  • 6.    Will the outbreaks subside on my face as time goes on?? This is the worst to be honest. I can’t concentrate and it feels HORRIBLE on my face. My eyelids always feel ‘raw’ and mucuousy, the way sores on lips look when someone gets a cold sore.

Again, have you had a facial lesion swab test positive for herpes?  You've been told they don't look like herpes, correct?

Terri
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66 months ago
Terri, 

I spoke with you before regarding this issue and I even sent you some pictures via online. There was one pic that looked suspicious to you but that's it. I had HSV1 prior to the encounter I've mentioned but these other symptoms came after my encounter; and since I keep testing negative for HSV2, I'm assuming this is another strain of HSV1. This feels exactly like what people describe when they get outbreaks. Like I said, I also spread it to my face and now my eyes and parts of my face feel horrible. The antivirals help a little but my skin looks and feels different. 

Would it be wise to take another WB test? I keep thinking that I'm one of those that doesn't test positive for HSV2. Regardless of me being on antivirals, should antibodies show up by now if it were indeed HSV2?  I've had some pimple like lesions on my pubic area and showed the pictures to my doctor but he refused to look at me or swab me. I've mentioned the PCR tests to them and they say they don't do that or have that in the clinic. 

This has affected my mental health greatly and I don't understand why doctors and PAs don't believe me. Many people don't get the obvious symptoms so I don't understand why you and the other doctors tend to say it's anything other than herpes. I've read Dr. HHH mention that more often than not, it is herpes what's causing the activity down there. 

No disrespect whatsoever, but I was hoping to get one of the other doctors just to get a 2nd opinion since I have visited here before and spoken with you. 

Could something else be causing this and maybe I already have genital HSV1 but this other thing (HPV?) is making my genital HSV1 act up all the time or something along those lines??

What are the recurring stats for genital HSV1 as time goes on?

I'm terrified of dating and giving this to another girl. I can't imagine the pain and anger I would cause to a potential gf/wife. 
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Terri Warren, RN, Nurse Practitioner
66 months ago
It is not necessary to take another western blot test, no.  The timing of your first test was completely appropriate, according to the University of Washington.  Again, there is no evidence that you have spread this anywhere - we don't know where your HSV 1 infection is because you've never had a lesion that could be swab tested to determine the location of our infection, at least not that you've told me about here. 
If Dr. Handsfield had read this post, he would definitely agree with me here.  I seriously doubt that he would say that someone having your specific syptoms would say that this is herpes, in the face of a negative HSV 2 western blot. 
If you had HPV, it would not impact the activity of HSV 1. 
We don't know that you have genital HSV 1, but if you did, and had been infected for two years, you would have an average of 4 days of viral shedding each year.  If you have it orally, viral shedding is far more common.
I believe that you are on the wrong track here, but you are unlikely to be dissuaded from the belief that all of your issues are about some new strain of HSV 1 or undetected HSV 2.  The reason I don't believe you are correct and your doctors and PA don't believe you are correct is that medical providers are science people and there is simply no evidence to suggest that either of the things you think are true.  
Sorry, but I do the posts here on herpes.  I will ask Dr. Handsfield to take a quick look at this and if he has a different opinion, I will share it with you.  If you don't hear anything from me, you can assume he agrees with me.  For now I will close this thread.

Terri
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H. Hunter Handsfield, MD
66 months ago
Greetings. At Terri's invitation, I have reviewed this discussion. I agree entirely with everything she has said. None of the symptoms you describe are suggestive of an HSV infection. I really don't understand why you're so concenred about HSV1? There is no reason to suspect you have genital HSV1, or that the rashes you describe are due to herpes. If your symptoms continue, it would make sense to see a dermatologist. Best wishes.
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