Very lost, need help.

[Captain07]

I will get straight to the point. About half a year ago I slept with someone for the first time ever and about 3 weeks after started experiencing strange symptoms. My thighs have become extremely sensitive, my testicles ache and I have general pain/burning in the pelvic/groin area constantly, this has been Going on for about 7 months now. I got tested for ghonnorea/clymidia at an urgent Care which I was told was negative, and was told to come back for a blood test in a few weeks due to it being too soon to have antibodies. Unfortunately I lost my insurance and had to wait about 4 months to get that blood test done. Eventually I got it and was told I had herpes type 2. I made an appointment with my PCP to discuss and have another test done because I heard the blood tests can be finicky. He was very reluctant but did it anyway after MUCH pushing and that test came back HSV-1 positive l, not 2, with a index of 35.1. This surprised me so I acquired a copy of my results from the urgent care and noticed several things. 1. They told me HSV-2 over the phone but in reality it was actually HSV-1 with a index of 31.1. 2. They told me they tested for syphilis as well but in reality did not. 3. They didn’t provide me with the results from the ghonnorea/clymidia urine test after I asked which leads me to believe they didn’t test for that either. My PCP then shoved papers in my face on how to take care of sores and told me all my symptoms were due to “tight clothing”. I have never had a single sore, and beleive me I have been checking everyday all day for months. Then to make matters worse I contacted the girl who acted surprised and said she would get tested, despite telling me she was clean before we slept together, and then promptly blocked me, which makes me think she either doesn’t want to deal with it, or knew she had something and doesn’t want to take responsibility. I’m in pain and depressed, and nobody wants to help me, is this herpes, is it not? I’m scared and need help.

[Terri Warren]

I’m a little confused by your test results, the second time you put them in. Are you positive for HSV 1 or HSV 2 or both? Tight clothing should not be causing sores. If you want to know if you really have HSV 2, the herpes western blot is the best test you can get. Remember, your medical records are, by law, your property and you have an explicit right to them. If I were you, I would obtain an exact copy of the lab tests that were done.

BTW herpes would not cause you to be symptomatic for 7 months straight – it’s not like that.

Terri

[Captain07]

Hello again Terri, its been a while but I’ve been doctor hopping and busy with work. I’m back to say that nobody can figure out where this bizarre pain is coming from, only that it may be severe nerve pain caused by the herpes virus in my genitals, despite the fact that I’ve never had an OB once, no sores, ever. To answer your previous question, I’ve gotten tested twice, both were high positives for HSV-1 (35 ish range), never HSV-2. However I’m losing my mind at this point. Planned parenthood told me that positive blood tests are so common that I probably don’t have it because a simple chicken pox vaccine can cause a positive and that it’s something else entirely (I have also done a full STD panel, where everything came back negative) other doctors say that it’s nerve pain caused by herpes. Waiting to see a urologist to see if they might have any insight but I am not hopeful at all. I’ve been given a cream, which has had no effect, and gabapentin, for nerve pain which has also done nothing. I’ve gotten so many conflicting answers from doctors and the internet that I am not even sure who to believe but I need this to stop. I am trying to cover any and all bases here, so my question to you is this:

1. To reiterate these are my symptoms: testicle ache, burning inner/outer thigh (now spreading all the way to my knees, yes its getting worse) same burning on my penis, but to a lesser degree (think sunburn) with no visible redness. This is daily, it never stops, it never goes away. And this happened a mere 4 days after sleeping with someone. What do you make of this? Can herpes cause pain, especially nerve pain this severe and constant? Some accounts say yes, others no.

2. Should I get western blot just to potentially rule out or confirm a herpes infection, despite my two positives. How would I go about taking the western blot. Can I use my insurance, and if not how much would it cost.

3. If this is herpes, how will I ever feel safe with a partner again?

[Terri Warren]

1. To reiterate these are my symptoms: testicle ache, burning inner/outer thigh (now spreading all the way to my knees, yes its getting worse) same burning on my penis, but to a lesser degree (think sunburn) with no visible redness. This is daily, it never stops, it never goes away. And this happened a mere 4 days after sleeping with someone. What do you make of this? Can herpes cause pain, especially nerve pain this severe and constant? Some accounts say yes, others no.

I would say no. You are negative for HSV 2 and only positive for HSV 1, which could be oral or genital, but statistically more likely to be oral. You’ve never had a cold sore on your lip or in your nose, ever in your life? If this happened to be HSV 1 genital infection, it would not be causing all of this constant symptoms as genital HSV 1 is normally quite benign.

2. Should I get western blot just to potentially rule out or confirm a herpes infection, despite my two positives. How would I go about taking the western blot. Can I use my insurance, and if not how much would it cost.
Do you mean should you do a blot to confirm that you don’t have HSV 2? You could. The IgG test misses 8% of HSV 2 compared to the western blot. This is NOT covered by your insurance. The costs, if done through me, run about $450 – the test, the consult with me, the blood draw fee and the shipping to UW.

3. If this is herpes, how will I ever feel safe with a partner again?
about 47% of the population in the US has HSV 1 so very common. If you have HSV 2, you’ll need to disclose to future partners, yes, but many people who accept you with herpes.

Terri

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