How do I know when I have prodome when I'm feeling it constantly?

I had quite a rare presentation of a primary GHSV2 infection earlier this year.

Following exposure, I became ill first with systemic symtoms (symptoms) (sore throat, fever, malaise, enlarged inguinal lymph nodes, aching limbs) and then developed a severe yeast infection, swollen and painful genitals, then proctitis. I had no visible external lesions. I then developed acute urinary retention, which required hospitalisation and an indwelling catheter. I also had severe constipation, unresolved by use of laxitives. I then developed low back pain followed by spreading numbness in my perianal region, which then spread to my buttocks, inner thighs, the backs of my legs and eventually my feet. I had an MRI which ruled out spinal cord compression, and a sigmoidoscopy whcih confirmed focal active colitis. Under the advice of a neurologst was tested for HSV infection. I had a lumbar puncture, which showed lyphocytosis. PCR from CSF and all swabs were negative. IgG HSV1 negative, HSV2 equivocal (this would have followed exposure 4 weeks prior.) Despite all negative tests, the diagnosis was sacral myeloradiculitis or Elsberg syndrome, a rare complication most often due to a primary HSV infection in immunocompromised individuals. I am not immunocompromised - HIV tests were negative, I have no other conditions other than a severe EBV infection 11 years ago which led to chronic fatigue and immune dysfunction syndrome, which could be the only culprit for why I was so severely effected by the HSV infection.

I have made an almost complete recovery following a 10 day course of IV acyclovir and a stay in hospital totalling 4 weeks. I am able to void urine and move my bowels now, and have regained sensation almost entirely with only some residual vaginal numbness. I am left with severe itching and tingling of the buttocks, genitals and thighs - it feels like insects crawling. I also have electric- shock type pains and burning sensations, and still have some numbess in my feet. I was exposed to the virus on 30 January, so it's been nearly 3 months now. I'm taking gabapentin for the itching and pain, which helps to turn down the amp, but doesn't eliminate it entirely.

I've also had the same sort of tingling around my mouth, though again had no visible cold sores and did not engage in oral sex with the person who transmitted HSV2 to me. I understand autoinnoculation could have occurred, meaning I transferred the virus from my genitals to my face myself during the early stages of infection.

I understand that even people with more typical presentations of HSV can suffer from lingering nerve pain, but I'm confused about whether my ongoing feelings of tingling and itching mean the virus is still active, and how I can differentiate between an outbreak and this constant pain and tingling. Also, should I expect a recurrence of my severe neurological symptoms with recurrences, or will I have a more typical presention when the virus recurs?

There is so little advice and literature out there with regards to central nervous system infections of HSV. and I'm confused and worried. I don't have have another neurology appointment until July, and nobody else in the medical profession seems to have a clue.

[waringblender]

If your HSV2 test was equivocal, doesn't that mean it's negative?

[sincerity26]

It means it was neither positive nor negative - it was within the range where a false positive is possible, but given how textbook my symptoms of Elsberg Syndrome were, and the fact that you generally don't expect a positive IgG within 16 weeks of exposure, the equivocal result was taken in context to be a positive indication that this was an HSV infection - it really couldn't have been anything else.I will be having a repeat blood test in 2 weeks to confirm, but it absolutely was a primary herpes infection.

[gracefromHHP]

I recommend paying to post this on Terri Warren's herpes board here on medhelp.  http://www.medhelp.org/forums/Herpes/show/339 is the link to her board.

grace