Classic Herpes Symptoms - negative tests?

[Titania]

Thanks for taking the time to answer my question.

My symptoms started 2 years ago about 9 days after protected sex and unprotected oral (given to him). Noticed a "insect bite" in pubic hair - stopped. Had a shower after him and after yelling out for one, STUPIDLY used his towel.  

6 months later just before going os I had the flu (constant clear mucus etc), then a thin walled bliser with yellowish fluid appeared on labia. It covalesced a bit, didn't hurt, ulcerated & disappeared after 3/4 days while on period.

Since then 1 episode of meningitis & several episodes lasting 10 - 14 days triggered by my period, stress, sunlight. Symptoms sometimes start with tingling vagina & agitation, blurry eyes, nausea, flu symptoms, distended stomach, a few small red, itchy pastules/pimples on upper thigh & buttocks in same place that scar, clear discharge. Then severe muscle aches, leg weakness, sore buttocks, neck & thoracic spine pain, fatigue/insomnia.

Tests: Western Blot - Inconclusive HSV 1 , Neg HSV 2 (8 months after)3 EIA tests all neg HSV 1 & 2 IgG & IgM, Western Blot - Neg HSV 1 & 2 (2 yrs after while on Valtrex)CBC, thyroid, imunoglobulins, iron, adrenal, sed rates, ANA, urine, RRV, EBV, CMV, Barmah Forest, Hep A, B, C, 3 HIV tests, Chlaymidia, Gonorreah, Syph, Lyme, Echo/Coxsackie, 2 swabs of buttock sores, endoscopy/colonoscopy. All normal! 1000 mgs Valtrex a day doesn't seem to work.

Some docs say genital HSV 1, a lot say I haven't. Could I be the .5% that don't produce detectable antibodies? If not, chronic fatigue, Behect's? (history of oral ulcers)

[H. Hunter Handsfield, M.D.]

Still, the negative blood test results almost certainly rule out HSV infection.

HHH, MD

[Titania]

Dear HHH,

Thank you for your helpful response. Yes, I have seen an Infectious Diseases specialist. He didn't know but said it could be an infestation or chronic fatigue. The stool samples were negative though.

I also had a tick removed by a doctor in Sydney, Australia around the time the symptoms started, but the Western Blot for Lyme Disease is also negative.

Thanks for your insight.

Titania.

[Titania]

Dear Doctor,

Sorry. I hope you read this. I forgot to add that when I had the genital blister I also had 2 very tiny, what looked like white blisters (like chicken pox) on my right buttock (same side as the blister)nearly at the waist. I think I've nearly blocked the whole episode out!

Thanks again.

[H. Hunter Handsfield, M.D.]

I'm quite sure you don't have genital herpes due to either HSV-1 or HSV-2.  Although it is true that rare patients--even fewer than 5%--don't develop measurable antibodies with standard tests.   But in addition, your symptoms are not typical, and the lack of response to Valtrex is powerful evidence against an HSV infection.  And contrary to popular belief, genital herpes recurrences have never been documented to be triggered by menstruation, sex, sunlight, or anything else.  So whatever is going on, herpes isn't it.

By the way, people don't get genital HSV infection through contaminated towels, only by sex with an infected person.  On top of all that, your partner 2 years ago probably had something other than herpes, such as folliculitis; erpes rarely causes lesions in the pubic hair area.

As to what IS going on, I can't say anything.  If you haven't seen an infectious diseases specialist, that would be a logical next step.

Best wishes--  HHH, MD