[Question #7871] Ongoing HSV-1 Outbreak
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51 months ago
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I am a healthy gay man in my 30s and was diagnosed with HSV-1 on my anus in September 2020 with a positive culture test. The initial outbreak was quite severe and took more than 5 weeks to resolve even though I was taking Valtrex. Since then, I have had extremely frequent recurrences that take a long time to resolve. I would estimate that I have had an active recurrence at least 2/3 of the time since my diagnosis. My current outbreak has been ongoing for two months. The sores take a very long time to heal, and new ones crop up while the old ones are still there. I was taking 500mg of Valtrex daily as suppressive therapy for the first several months after the initial outbreak, but because that was not effective, my doctor increased me to 1000mg of Valtrex/day. That dosage was also not effective at controlling the outbreaks and so I have been taking 500mg Famciclovir 3x/day for the past several weeks. Unfortunately, it has not helped end my outbreak that started in mid-March. I recently had a negative blood test for HSV-2, and as I am on PREP, I am regularly tested for HIV (and remain negative). I have no other physical health issues and I have a health diet, workout regularly, get adequate sleep, and do my best to control stress. I also take a daily lysine supplement and have been using zinc oxide cream for the last few weeks, neither of which have helped with the outbreak. I understand that the length and frequency of my outbreaks are far outside the norm, particularly for someone with HSV-1 rather than HSV-2. I came to terms with my infection emotionally quite a while back, am not ashamed of it, and have even discussed it with my very supportive, non-judgmental friends. It is very frustrating not being able to have sex for months on end without putting someone at heightened risk. Is there anything else I can do to try to get the infection under control?
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Terri Warren, RN, Nurse Practitioner
51 months ago
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Interesting case. My first thought when I read this is that you need an evaluation to be absolutely certain what you are experiencing is still HSV 1 recurrences. You're right - this is completely atypical for HSV 1 in the genital area. If you were my patient, I would take you off suppression for at least a week and re-swab test the symptoms that you are having, including a bacterial culture and probably fungal cultures as well. Sometimes, when someone is diagnosed with herpes, we think that everything that is happening in the genital area is due to herpes but often it is not. I had a patient referred to me by her OB, she was accurately diagnosed with HSV 2 three years prior and for the past year, had been having almost continual outbreaks. By the time I saw her she was taking 3 grams of Valtrex a day with no benefit. She had not had sex with her husband for one year. When I examined her, she definitely had many sores in the genital area. But when I went to swab test them (I was told by her doctor, no need, it's herpes), the skin gave way in a very different way than when I traditionally swab herpes lesions. The culture was negative for HSV 2 and positive for a staph infection. I put her on antibiotics and the sores were gone in a week.
I can't say for sure that you have something other than herpes causing all these issues, but I strongly suspect it. Three things: 1) genital HSV 1 rarely recurs, 2) herpes outbreaks normally last a week to 10 with recurrences, 3) you are not benefiting from antiviral medicines. You don't way what you experience has been with providers beyond your first outbreak but I would be interested in more detail about that.
Terri
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51 months ago
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Terri -- Thank you. This is very helpful information. I will stop the suppression therapy for now and schedule an appointment with my doctor to ask for the kitchen sink cultures. What is your thinking behind waiting at least a week before getting re-swabbed? Is it so that, in the event that HSV-1 is the cause of or a contributing factor to the sores (in conjunction with another type of infection), the week off therapy will make it more likely that a swab would detect HSV? If this is staph or some other type of infection, I'd prefer to know ASAP, but will wait a week if that's what you'd advise. As for my experience with my providers after the initial outbreak, a few months ago I emailed the PA who initially diagnosed me and and explained the frequent and long-lasting outbreaks and asked to be bumped up to 1g Valtrex, which she did. About a month later, I also mentioned it to my PCP (who's in the same office as the PA) during a PREP appointment. He seemed surprised, but didn't mention the possibility that it could be something else. Two weeks ago, I emailed him to say the Valtrex wasn't working, and he simply switched me to Famciclovir to see if that would work.
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Terri Warren, RN, Nurse Practitioner
51 months ago
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I want to be sure all the antiviral medicine is out of your system and is not impacting the swab test for herpes. That's all
Terri
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