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Hi Terri,
At the beginning of this year, right after a high risk sexual encounter, I started feeling itching, stinging and burning mainly in anogentital area. I did not seek medical attention at that time as I thought the symptoms might go away by themselves. Later I had several episodes of mild burning and pain on urination, and developed low grade fever (99~100.5F) everyday mostly in the afternoon and evening, associated with extreme fatigue,night sweating and poor appetite. My PCP ordered a series of test, including blood and urine culture, STD panel (syphilis, GC, chlamydia, HIV, but not herpes), all came back negative. He prescribed antibiotics (Levaquin and doxycycline) for around 2 weeks, which did not help. In the end of Feb, I got herpes test: HSV1 IgG (+)>5.0, HSV2 negative. I never saw obvious blister, so never got swabbed. I was started on Acyclovir for 10 days and then switched to Valtrex 1 gm twice a day. The fever stopped. But the itching and burning remained, and spread to all over the body. In March, my eyes started itching and pain. I went to see an eye doctor. He did not see any lesion in the cornea, and prescribed artificial tear and anti-allergic drops, which were of little help. About a couple of weeks ago, I noticed some red pimples in my scalp which are very itching and sometimes very painful. Shortly afterwards I started feeling dizziness and headache, located mainly around my eyes and the temporal areas. In the past 3 months, I saw several doctors including ID, dermatologist and ophthalmologist, none of them could give me a definitive diagnosis, which is really frustrating. But I am 100% sure I got herpes. I tried to stop valtrex for a couple to days, then the fever came back with watery diarrhea. after resuming valtrex, the fever and diarrhea resolved the next day. I tried to cut valtrex to 1gm a day, each time I developed some low fever and sweating. I also tried increasing valtrex to 2gm twice a day, and was feeling almost completely well. I am really worrying that I have contracted disseminated, drug-resistant herpes, including ocular herpes and herpes encephalitis, and don’t know what to do. I am currently still taking Valtrex 1g twice a day, but feeling that it’s not working. I am considering increasing it to 2g twice a day again, which seems the only way that helps. How do you think about it? Do I need to get IV meds? Please help me. -
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No, I don’t think this has anything to do with herpes. The high index value just means you have a well established HSV 1 infection, as does 56% of the population. Your symptoms are very concerning and I think you should see a neurologist. I don’t think you have enchephalitis though. I don’t know why the Valtrex improves your symptoms. Most of the symptoms that you describe are not consistent with herpes. I know you are searching for a reason for your symptoms but I think that the fact that you have a positive antibody test for HSV 1 is just a coincidental finding. Please follow up with your own provider about these issues.
Terri
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This does not look like herpes. Herpes would not be all over your body as you are describing. I think you need to see a dermatologist so they can sample on of these lesions.
Terri
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