HSV 1 again and again

Hi.  I came to visit you years ago and did the western blot.  I was positive for HSV 1 both oral and genital.  My IgG didn't show positive for over a year from initial OB after oral sex.  I have struggled with OBs since in both areas.  For some reason I'm the unlucky guy that has these in my nose, mouth, throat, on my face, lips.  Pretty much it is random and can occur every where.  Especially if I'm in the sun.  Which is bad cause I love outdoors.  Anyways.

I have had a sore/bump on my inside buttcheek about the size of a penny in the same spot now for a few episodes over the last 2 years but the spot just gets swollen and like a ball under the skin. Like a swollen gland. Never opens up but is close to the skin.  Very painful.  Matter a fact my genital issues since the very first episode which occured on the area between the belly button and shaft, have been more like rashes and pain inside my anal area and area between my butt and legs.  I have never had anal anything.  I am straight.  Now this reaccurring bump is the only thing outside the norm and unlike my face it is the only area that is effected in the same location.  This makes number 4.

I plan to see a derm dr, but does that sound right?  do herpes sores not break open?  I rarely have had an ozzing sores.  Just swelling, even on my face and inside my mouth and nose.  Though it hurts, especially in my nose.
I typically get the OBs at the same time too.  Guess stress.

Thanks for you time.

[Terri Warren, RN, Adult Nurse Practitioner]

A western blot alone would not tell you if the infection was oral or genital. It is an antibody test only, and would just tell you if you were infected or not, period.   If you had a positive swab test from one location or the other, it would tell you the exact location of your infection.  It is pretty normal to have oral outbreaks in the locations that you describe.   The genital symptoms are less clear, and it would be good for you to have these lesions swabbed when they come up, even if they never open up.  

You said your IgG didn't show positive for a year - are you talking now about the western blot or the IgG ELISA?  The ELISA frequently misses the HSV 1 antibody test.

Perhaps you can provide me with some clarity.

Terri

[Beenyears]

Terri,

I had the IgG ELISA and it didn't show positive for over a year and a half, but it is always positive now.  My IgM at that time was thru the roof high after first exposure and it remained high for a year.  The first doctor looked at my genital sore and said it was in a odd area for first exposure but it looked like herpes and ran tests above to decide if type 1 or 2.  He said by sight it looked like a herpes sore but didn't do a swab.  He used the IgM results when they came in to give me diagnosis. That was when I went to you because I was having horrible headaches and neck pains and lower back pains since first OB, even with no outer symptoms.  Valtrex didn’t help.  My inside mouth and throat hurt and I had terrible pain in my urethra off and on every week.  You ran Western blot which was positive and then ran many tests on me and I went to every specialist they have because no one could see 'herpes' sores that explained my pain.  The final rheumatologist and neuro doctors said it must just be herpes because I was healthy.  I never had these issues until the initial OB just a week after having oral sex given to me by a girl I had been with for months that turned out to be type 1 positive and ‘says’ she was unaware.  In the first 6 months after first OB  it was more genital issues (terrible pains) then both areas became about even.  I could have died that first week with headaches and horrible pains in my legs and genitals.  
I have been swabbed 3 times since those days, off the genital area, and they all came back negative even though they said in lab reports it had characteristics of herpes because they actually cut the sores out.  I have scars now!  I have a great derm dr now that has looked at me and he can’t explain it.  I wish I was near him to show this bump.  But it has been the same area a few times over the last year so I’m sure that is what it is.  My genital symptoms don’t open up, but I have gotten increased rash between my legs that the derm dr once called Candida, but this isn’t something I had before and it hurts and always follows the pain in my back, much like a horrible neck pain means bumps in my mouth and nose and around my eye.  Due to my job I am often not near my dr.  This is one of those times.  
This week I had terrible pains again and a day later OB on my face and buttocks area as mention before.   Kinda frustrated that I have gotten better each year but still have a OB in mouth face monthly and pains in genital area often even without a bump.  Well enough of this.  I hope they get a cure soon cause I’m on year 4 and it sucks for me.   Maybe I’m just weird and got lucky to have HSV type 1 in both locations at one time and it eats my lunch.  I am always afraid to do stuff outside or athletic because that triggers this carp.  Ruining my life.  I haven’t dated much either cause I’d be heart broke to have person I love have this mess.  Thanks as always Terri!

[Terri Warren, RN, Adult Nurse Practitioner]

We could send you swabs to collect at home when you get these bumps, and you could send them back to us and we could run the PCR test.  That way, you wouldn't need to be near your doctor when you have an outbreak, or what you think is an outbreak.  We know you have HSV 1 but we honestly don't know exactly where.  The IgM and IgG tests only tell us that you are infected, not how long.  IgM can and often is present with recurrent disease, and tells us nothing really.  The lack of a positive ELISA HSV 1 for a year also doesn't tell us anything.  You have made the decision that this is all caused by herpes, but there is no real evidence for that.

Terri

[Beenyears]

I did that once already a couple years ago and it was negative.  Your Westover Heights clinic has been great to me!  

I say it's herpes because until that initial OB in May 2008 I was fine.  The symptoms of that first OB were everything listed on WebMD.  Never in my life had a headache that bad and pains in my legs!!  I have been tested for everything you can imagine to say it isn't hsv 1.  I guess I'm just still after 4 years stunned I have such a bad case of hsv 1.  Thanks for your time.  I wish they had a National movement to raise funding and awareness to new research.  My Uncle is an ER doc and says this type 1 is an epidemic.  Sees so many cases.

[Terri Warren, RN, Adult Nurse Practitioner]

I'm sorry you are having such a rough time with this ;-(

Terri