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Disseminated drug-resistant herpes?

› Forums › Herpes Questions › Disseminated drug-resistant herpes?

  • This topic has 4 replies, 2 voices, and was last updated 7 years, 8 months ago by Terri Warren.
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    • May 21, 2015 at 7:42 pm #6818
      lifecrisis
      Participant

      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.

    • May 22, 2015 at 2:39 pm #6827
      lifecrisis
      Participant

      Hi Terri, I am waiting anxiously for your advice.
      My questions:
      (1) How likely do you think I am suffering herpes? Based on the high titre of IgG, the symptoms (itching, burning, low fever, eye inflammation, papules all over including scalp, dizziness, headache, etc. ). I cannot find an alternative explanation for all what I have been suffering Anti-viral seems working partially at least, while antibiotics did not help at all.
      (2) If it’s herpes, how come it has been lasting so long ( almost half a year) and keep worsening. I did have a lot stress but I believe I am not immnucompromised. I had HIV test 3 times over this period all negative. I know it’s unusual for an immune competent individual to have drug resistant herpes, I was worrying that I might contracted a resistant strain from the beginning. Do you think it’s possible?
      (3) I am currently mostly concerned about my persistent dizziness, headache around the eyes and the temporal region, which is worse at night. I did MRI a couple of weeks ago, no infection was identified, but at that time I did not have same headache as I have now. I thought I did not have full-blown encephalitis just due to the suppression effect of valtrex. I am worrying that if I stop it, I will experience an catastrophic progression of the disease.
      (4) I started 2g valtrex twice yesterday, feeling better during the daytime , esp. the eye pain. But the headache returned last night. I really freaked out, don’t know what to do next. I have an appointment next week with dermatologist, because I am running out of my meds. I don’t know if I can wait till that time.
      Thanks!

    • May 22, 2015 at 7:17 pm #6831
      Terri Warren
      Keymaster

      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

    • May 23, 2015 at 4:51 pm #6847
      lifecrisis
      Participant

      Thank you Terri. I know my symptoms sound very atypical. However, I have no other explanation for the problems.

      I am attaching one of my rashes . I have these type of pimples on scalp, shoulders, arms, trunck and elsewhere. Sometimes very itching. They come and go. May recur in the same place. Do yoy think it looks lIke herpes?

      Sorry for bothering you on this holiday weekend. Thank you again!

    • May 23, 2015 at 7:19 pm #6851
      Terri Warren
      Keymaster

      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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