GHSV1 Chronic unilateral pain & parasthesia

[feelingcrazy911]

I have had HSV1 on my lip since at least early 20s.  Last year I came down with it genitally 3 days after having sex with a man who pulled his condom off when I wasn't looking.  It was painful, I felt like I had the flu.  I cultured negative, but because of the symptoms my GYN put me on Valtrex. We both assumed I had HSV2.  I kept having chronic subacute symptoms so he put me 1 gm bid.  A few months later I started having left groin pain and then left armpit pain that lasted for 1 week the first time and and month later 2 weeks.  The third time was 4 months later and the pain has never left.  Although I might get a few days of reprieve it is really never gone.  Along with this there is pain off and on in my arm, chest, and thoughout the left side of my body.  I also have parasthesias on my vulva, left side of my vagina, perianally and orally.  Only on my left side.  My oral symptoms are in my tongue, down my throat, cheek and lips.  I have symptoms daily even on the Valtrex.  I've also tried Zovirax and Flamiclovir alone and in combination with the Valtrex.  
I've had almost every test under the sun and everything has been ruled out except HSV 1. My antibody level was a 40.   I have been tested for and shown negative for HSV 2, Herpes Zoster, cancer, autoimmunine disorders, HIV, MS. I was positive for Ebstein Barr.  I've had an MRI of the brain, CT scan of the abdomen up,to brain, CXR ANA, CEA, Lupus, Sed rate WNL, I've been to a GYN, Internal Med, Oncologist/Hematologist, rheumatologist and now have an appointment with an infectious disease specialist.  
I've spent countless hours reading research on herpes good sites, bad sites, journals or virology, you name it.  I just don't understand why I've got it like I do.  Help me please.  I've got a month before I see my doctor and I stay so stressed over this I am about to lose my mind.  
My biggest concern is shedding and passing it on.  Yes the pain is irritating and very bad at times, but I deal with it.  I can't get clear answers about it.  I am a 48 year old caucasian female who got this from the 3rd sexual partner in my whole life.  I am healthy otherwise.  

[gracefromHHP]

Oh good grief - you down to eating apples and drinking water?  At least you are getting some answers though finally!


I have issues with fresh pineapple but if I grill it, I'm fine. Eating it fresh though, I get a whole mouth full of ulcers and my face goes numb. good times....NOT!  

grace

[feelingcrazy911]

Well food allergies are the whole problem.  So far I'm allergic to gluten, pineapple, lemons,  dairy, aspartame, and corn.  Will find out the rest tomorrow.  Thank you so much.  If it were not for your idea id still be lost.

[gracefromHHP]

once had a gi doc say we all should be eating around  the perimeter of the  grocery store and staying out of the middle. makes sense but oh it's so hard to do.

[feelingcrazy911]

Thanks, it is going to be very hard to take all of these things out of my diet until I figure out exactly what I am allergic to.  I am just starting and I can tell the difference already.  

Thanks again,  Will let you know.

[gracefromHHP]

good luck!!

let us know how it goes. Many folks never, ever believe me when I tell them it's not always herpes going on. posts they can follow to see that for themselves are very helpful to others :)

keep a food diary for a month along with what symptoms you have had that day and where. that's helpful to take to the allergist and/or gi doc when you go to be seen too.

grace

[feelingcrazy911]

Omg,  I've done research since our last email.  Food allergies may be part of the problem.  I ate peanut butter and within 30 mins I had intestinal cramps, within an hour tingling around and in my mouth and I bet eventually genital and anal issues.  I had been symptom free for a couple of days.

Thanks....I'm going to start tracking my reactions to foods.  Going off the valtrex.  Now I just need to figure out this nerve pain.

[gracefromHHP]

sometimes the greater than and less than signs cause troubles.  

yes being on suppressive therapy from the gitgo can delay seroconversion. one more reason to stop all herpes antivirals and try to get the lesion culture done to get confirmation that indeed you do have genital herpes going on.  also typically when antivirals aren't taking care of symptoms, it's because it's not herpes going on.  

gluten allergies can cause oral and genital rashes. some folks even get them just from additives in lipsticks that are gluten related.  

[yi3o8]

So if your level was less than .91 for HSV2 then you would be negative if I'm not mistaken.

[feelingcrazy911]

I don't understand why when I post the info it deletes some of it so here is the Equivocal 0.91-1.09.  Pos is >1.09.  Lets try this again.  Negative is NOT 1.09.

[feelingcrazy911]

Thanks so much for your time and help!!
What about my symptoms would make you think gluten allergy.

I pulled out my IgG HSV2 test and was a little alarmed this morning.  My level was <0.91. The Index was 0.00-0.90.  Negative is 1.09. "Equivocal may suggest early infection"  Could it be that I am positive but my level is low because I have been on Valtrex 1gm bid???  Thanks

[feelingcrazy911]

Yes I've been on valtrex since 2/09 except for the month of January 2010.  My Igg was 12/09. Sex was 1/30/09.

[gracefromHHP]

you've been on herpes antivirals almost the whole time since the incidence and your blood testing right?  how long into things was your igg blood test done?

1 out of every 10 people have gluten allergies. they are very under diagnosed.  

grace

[feelingcrazy911]

Thanks!!   I have not been tested for wheat allergy, but I would not be surprised if I was allergic.  Is it possible that I have hsv2 even though the blood test is neg?  Could type 2 cause my symptoms?

[gracefromHHP]

it's the best way to finally figure out what in the world is going on with you.
have they also tested for a wheat allergy?

grace

[feelingcrazy911]

My tests were blood tests and they were 11 months after the first symptom. Why is that not sufficient?  So are you saying I should allow myself to break out all over my lips vagina and anus.  I don't know if I can do that, I am a professional and having cold sores all over my lips would be bad.  

[gracefromHHP]

I recommend that you stop all herpes antivirals at this point to be honest.  it's not likely you contracted hsv1 genitally after having a well established hsv1 oral infection.  

genital herpes will not cause all the symptoms all over your body that you have either.  

should you get new genital symptoms after stopping all the antivirals, be seen promptly for a lesion culture and typing again. At this point you know you have hsv1 orally, you know nothing else to be honest.

grace