Atypical symptoms?

[nycjen40]

I am a 37 year old woman who made a huge mistake.  Sex with a younger man that I didnt know and will never see again. I have read this forum many times and thank you for the valuable info that I have received.  My symptoms are:

I have had some a typical symptoms of possible herpes infection but cannot confirm.  After the encounter above I had a slight burning sensation in my genital area with itching. Went to my GP and GYN and got tested for basically everything (twice) everything was negative.  After about a month I started feeling inner thigh pain and buttocks pain.  It would start in my inner thigh and buttocks sometimes on both sides and go all the way to the back of my leg to my knee.  Sometimes the pain would seem to be in my hip joint and burn badly. Also, i would feel this burning sensation in my lower back and in my upper thighs and genital area.  Include in this is pain in lower back and occasionally in my genital area.  Have read from some HSV sufferers that this is not common but happens.  3rd month pain still there and consistent everyday.  Went to my GP again and got tested for herpes because the forum said wait till possible presentation of hsv antibodies.  Herpesselect test IGG and Igm was performed.

HSV 1 IGg .86
HSV 2 IGg .20
IGM and titer not detected

Test was negative for both but still I have the pain consistently. Between 3-6 months I have had 1 MRI neg, seen std specialist twice, a chiropractor, and my GP and GYN again and again and everyone has said its not HSV.
But, still I have this pain in my buttocks and the back of my legs that wont go away. Also, consistent lower back pain.  And recently I have had a lot of vaginal and anal itching with the burning sensation in my genital area and my upper thighs and back.  All of which some HSV sufferers have. At 6 Months Made my GP give me a second herpesselect test because pain and burning is there everyday and no one can figure out what is wrong with me.

Basically, the same exact numbers as the 3rd month test.

HSV1 IGg .86, HSV2 IGg .20 Igm and titer not detected
All negative

MY questions are (finally)?

1. I know some people never develop antibodies but at 6 months and 10 days can I rule out HSV with herpes select test.

2. If a person was to develop antibodies is 6 months and 10 days always enough time to be accurate?

3. Can you think of anything else that would cause this pain from a sexual encounter?

4. Any other thoughts from an expert?

[H. Hunter Handsfield, M.D.]

Whatever is going on, you can be certain it isn't herpes.  Your statement that herpes causes such symptoms really isn't right, regarldess of what you have heard or read.  Neuropathic symptoms--tingling, numbness, etc--generally are limited to transient periods for a few days before an overt, easily recognized herpes outbreak (blisters, sores, etc).  Your pain patter is inconsistent with an HSV infection.

1 and 2) Chance your symptoms were due to herpes, even before the HerpeSelect tests were done:  1 in 1000, as a guess--probably even lower.  Chance you have HSV despite 2 negative HerpeSelect test results:  1 in 1000.  So the odds you have herpes can be no more than 0.001 x 0.001 = 1 in a million.  That is, zero. Put herpes out of your mind; it has absolutely nothing to do with your symptoms.

3) I'm not convinced your problem was caused by the sexual encounter you describe--unless there is an emotional/anxiety component related to the encounter.  Your symptoms are must suggestive of idiopathic vulvodynia, with or without a separate neurological syndrome.

4) No more thoughts beyond those above.

Good luck--  HHH, MD

[H. Hunter Handsfield, M.D.]

The additional information doesn't change my opinion.  In fact, that a neurologist agreed with the other docs makes herpes less likely still.  Follow your doctors' advice about evaluating other possible explanations.  Herpes isn't it.

HHH, MD

[nycjen40]

I forgot to mention that i have had a tingling sensation throughout my legs occasionally, my legs just dont feel right, and soreness like I havent streched in weeks.  Also, to the list I went to see a nuerologist and he found nothing also.

[AlexAZ]

Hello Brooklyn,
  I am a 42-year-old male with similar symptoms. My itching and burning include the same areas plus my mouth (lips mostly). This all started a week after my bad decision with a girl that I didn't know very well. My GP told me that I was just paranoid (and that there wasn't a blood test for herpes). When an odd rash developed on the crease of my upper thigh, I saw a nurse at Planned Parenthood, who thought that it was a fungal infection, but couldn't elaborate. When my tongue became white the next week, I started thinking HIV (since 2 medical people acted confident that it wasn't herpes). I found a clinic that tested for HIV (anonymously). I tested for HIV, HerpeSelect, and everthing else. Presumptive Positive for HSV-1 (no numbers) was my only positive.
I went back to the familiar 'ol GP to talk about HSV-1 or a fungal infection.
I intend on finding a doctor who knows more about STD's, and retaking the HerpeSelect to get those numbers.  
Jen, my symptoms have remained for over 4 months now, with varying intensities. It confuses me that medics quickly dismiss the likelihood of herpes if it doesn't follow a preconceived nice and neat pattern.
I hope that things smooth out for both of us.   Alex :o)

[H. Hunter Handsfield, M.D.]

Re "It confuses me that medics quickly dismiss the likelihood of herpes if it doen't follow a preconceived nice and neat pattern".  

It equally frustrates docs when patients get a particular diagnosis in mind and won't let it go despite expert medical opinion and the best available diagnostic tests.  Why would you continue to assume you have herpes and/or look for evidence you are infected when the symptoms you describe simply have never been scientifically attributed to herpes?  With equal justification you could charge docs with irresponsibly "dismissing" various kinds of cancer, neurological disorders like multiple sclerosis, Lyme disease, or a hundred other conditions.

And the timing with respect to a new sexual partnership truly can be (probably is) coincidence.  Look at it this way:  What other events took place in your life during the 24 hours either side of the new sexual exposure that concerns you? Something you ate? Someone new you met and shook hands with, who maybe hadn't washed his hands after blowing his nose? The diesel fumes you inhaled walking down the street? The fertilizer you got on your hands when you did the gardening? There truly is no more reason to ascribe your symptoms to the sexual exposure than there is to every other potentially infectious or chemical/environmental exposure that happened to occur around that time--99% of which you would never know about.

We docs aren't (mostly) just insensitive twits if we can't confirm a diagnosis that the patient is most concerned about.  Sometimes we're right! Anyway, I also genuinely hope "things smooth out" for both of you.

HHH, MD

[Alfombra]

I posted the day after you did and didn't see your post.  We have almost identical symptoms.  My first HSV2 IgG came back negative.  But based on the IgM, my doc told me had it.  Skip forward eight months (and lots of pain).  I get a copy of my lab results.  After seeing the "negative", 99% of my symptoms went away.  I'm getting a confirmatory HSV2 IgG since I'm now nine months out from last possible exposure.  I just thought I'd share this with you.

[Bowers]

Re: Chance your symptoms (burning sensation in genital area) were due to herpes, even before the HerpeSelect tests were done: 1 in 1000, as a guess--probably even lower.

Re: What other events took place in your life during the 24 hours either side of the new sexual exposure that concerns you? ......... the diesel fumes you inhaled walking down the street? The fertilizer you got on your hands when you did the gardening? There truly is no more reason to ascribe your symptoms to the sexual exposure ......

1 in 1000?
Diesel Fumes?
Fertilizer?

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