GHSV1 Chronic unilateral pain & parasthesia

[feelingcrazy911]

Ive had HSV1 orally since early 20s.  Last year I came down with it genitally 3 days after having sex.  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 symptoms so he put me  on 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 a month later 2 weeks long.  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.  There is pain off and on in my arm, chest, and throughout 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 have never broken completely out with the blisters.  I think it is because I’ve been on the Valtrex since the first symptom with the exception of about a month this past January.  As soon as I felt the parasthesias and rawness start I went back on the Valtrex.  
I've had lots of tests and everything has been ruled out except HSV 1. My antibody level was a 40.   Almost a year after the first symptom I was tested for and showed 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 am very physically fit. One of my biggest concerns is shedding. I am a 48 year old Caucasian female who got this from the 3rd sexual partner in my whole life.  We had sex once.  Can the HSV1 be causing all of this?  

[Edward W Hook, MD]

Thanks foe the additional information.  I worry that the pains and abnormal sensations you describe are not due to HSV and that your HSV is coincidetal, not causal.  I would suggest you discuss this with a neurologist.  Sensations of the sort you describe, seperated in time and space are not consistent with HSV.  EWH

[Edward W Hook, MD]

Welcome to our Forum.  I must say, there are many aspects of your description of events which make me concerned that your symptoms are not due to HSV.  You note that you have had HSV-1 since the early 20's, I presume on the basis of having had cold sores.  If this is the case, it would be almost if not completely unheard of for you to spread the infection to other parts of your body, to get another HSV-1 infection at another location (i.e. genitally) from another person or to have increasing severity of your oral symptoms unless you are somehow immunosuppressed with another illness or immunosuppressive medications.  

It is not clear to me if your pains are continuous and they sound to move around your body.  Neither of these is characteristic of HSV. Furthermore, it is not clear to me that there is evidence that your symptoms are improved with therapy for HSV. This too is most unusual.  

Perhaps you can give me more information about what is going on and I might be able to offer additional suggestions or advice.  EWH

[Edward W Hook, MD]

Your tests were taken long after the events that raised your concern.  "Equivocal" results reflecting developing antibodies occur far sooner in the course of infection and there is some imprecision in the blood test results and your equivocal values fall into that category.  There si really little to suggest that your symptoms are an unusal manifestation of otherwise undiagnosed HSV-2.  As I said before, I would recommend trying to shift your focus from concerns about HSV as a contributor to your symptoms.  I suspect that continuuing to focus on HSV will use time and energy that might be better applied to evaluating other potential contributors to your symptoms.  I have little more to say.  Sorry.  EWH

[feelingcrazy911]

Equivocal is 0.91-1.09 darn it I don't understand why it is not showing up like I'm typing it.  Positive is >1.09.

[feelingcrazy911]

I don't know why but the posting ends up being different that I am putting up.  Let me try it this way..... negative 1.09.  Lets see if this works.  

[feelingcrazy911]

Oops restated

Negative    1.09

[feelingcrazy911]

I am sorry to keep asking questions, but just one more thing.  I dug up my labs this morning and was a little shocked. Even though the doc said it was neg I want your opinion.   I hope it still means I am negative, but I am pessimistic now about a coinfection.

My IgG level was <0.91   Index was 0.00 -.90
                                   Neg           1.09
It states that Equivocal may suggest early infection.  
Could my levels be this low because of being on Valtrex 1gm bid for so long?  

Thanks so much!  Anxiously waiting for your answer.  

PS:  My HSV1 was 4.43 positive is > 1.09

[Edward W Hook, MD]

There is reaqlly no reason to continue to worry about HSV-2.  You have negative tests and your current problems are not at all suggestive.  YOu may need to ask your neurologist for a better explanation rather than just giving you a presecription.  If they won't do this, I would suggest a 2nd opinion.  Sorry not to be more help.  I can understand how frustrated you must be.  eWH

[feelingcrazy911]

PS:  I had a tick bite 6/09 that had the "bull's eye" rash that was not treated appropriately until 1/10.  The pain did go away for 1 week after I had been on Doxycyline for a week. It was the left leg which is the same side of my body that has the pain.  Just thought this may help.  

[feelingcrazy911]

I've been to a neurologist and discussed this and he just gave me Neurontin for the pain and referred me to an oncologist hematologist.  Is there any blood tests that you would recommend that would test my immune system?  Also could I still have HSV2 even though my blood tests were negative?  My culture at onset was negative also.   Do I just need to see the infectious disease specialist?  What about the parasthesias orally and vaginally?  Thank you so much for your time and consideration.  

[feelingcrazy911]

Yes I have had cold sores and had blood tests 12/09 that confirmed HSV1.  I had a herpes panel and tested negative for everything except HSV1.  My arm pain is there ( teres major muscle) 50% of the day and groin pulses a few times a day.  There is, it feels like, neuronal pain throughout the left side of my body that moves around throughout the day, and that is pin point in nature, comes and goes and never lasts more than two minutes.  I do occasionally have pain the right teres major muscle.  This pain has been constant since 11/09 with the exception of 1 full week 1/10.  I went off Valtrex for one month and began having vaginal parasthesias, went on Valtrex and symptoms dissipated within 4-5 days.  So coincidence, I don't know, I've never went off the antiviral since 2/09 for a very long so I don't know if it really helps that much.    
As far as immunosuppression, I am on no meds/injection for that and my Western Blot HIV was negative.  I've not had a virus, cold, etc for at least 4 years with the exception of 5/09 when all of the swine flu was going around...I tested negative for the flu but had a 102 fever for 6 days.  I have had severe allergies my whole life.
I thank you so much and appreciate any information that you can give me.  I'm willing to do almost anything to figure this out.