[Question #5571] High frequency of genital herpes outbreaks

20 months ago

I (male, 56) was diagnosed with anal herpes on April 23 2019 in Thailand based on a visual exam. I took Acyclovir 400 3x a day for 10 days. I had a IgG blood test for herpes 1 and 2 on April 29 2019. gC-1 and gC-2 bands were detected. The interpretation: Borderline for HSV-1 and HSV-2. I had a colorectal surgeon do a sigmoidoscopy on May 16 2019. The overall impression: Erosive rectosigmoiditis with anal fissure.

During a follow up exam on May 26 2019 the dr said he saw a lesion and did a PCR test for both HSV 1 and HSV 2, which came back negative. I had already been on Valtrex 500 2 x a day for 4 days before that swab test.

I am back in the US now and have been on suppressive therapy of Valtex 500 1 x a day for around 10 days.

Question:

I seem to be getting outbreaks almost every 10 days – 2 weeks. I feel I am currently having one even though I am on suppressive therapy. I also experience some twinges and random aches in a specific region on the left side my anal verge with some radiation down my left leg on most days. I am more likely to get these symptoms when I am stressed, even momentarily. I read that the average frequency of genital herpes outbreaks is 5 – 6 times a year. I know there is a range around this but I am confused and distressed about why I seem to be having outbreaks at such high frequency. I would like to better understand my experience based on your expertise. Is my frequency within the range of outbreak frequencies that you have observed, or extremely unusual? Is it possible that I have a Valtrex resistant strain? Should I try switching to acyclovir (I understand that Valtrex metabolizes to acyclovir in the body). Can I expect the frequency to go down over time? Would you recommend I get tested? Is it even remotely possible that I don’t have HSV 2?

Thanks again.

Terri Warren, RN, Nurse Practitioner

20 months ago

I would strongly encourage you to stop taking the herpes medication so you can get an accurate diagnosis. The PCR test of the lesions that you had done in May could well be a false positive due to the medication that you are taking. It is also possible that you don't have herpes - 1 in 5 visual exams that indicate herpes are in error, and that's by professionals who work in the STD field so you can imagine the error rate of visual exams by generalist medical providers. When you say that you are having outbreaks every 10-14 days, what is that like for you? Blisters, sores, ulcerations? The best way for you to get an accurate diagnosis is to stop antiviral therapy (and your infectiousness to others will go up so be wary about sexual contacts IF you have herpes), get an outbreak and have it swab tested using PCR right away. If negative, stay off medication and if you get another outbreak, try again. if that is also negative, stay off medication and get an IgG test or herpes western blot at least 8-12 weeks out from stopping the medicine.

Terri Warren

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20 months ago

Thank you for your prompt reply! Clarifications on your question, and a few follow up questions below.

1. My symptoms are mild and restricted to a dull ache and sometimes burning in a specific small region on the left side of my anus. The ache (kind of like a very minor cramp) sometimes radiates to the left buttock and down the left leg. These symptoms come and go, and I don't feel them most of the day. They seem to intensify when I feel stress or when I am walking. I feel these symptoms every few days but they get more intense and protracted for the span of a few days, every 10 - 14 days or so.

I don't feel any pain from blisters (even didn't during my first outbreak) or feel anything when I feel around with my finger. I do feel a small swelling in my anal verge (kind of like a hemmorhoid) on days when my symptoms are most intense. I have tried to take some pictures with my phone and I see the swelling and sometimes 1 - 3 white dots which look like small pimples, never any open sores or ulcerations. I have had several doctors (infectious disease specialist in Thailand, my GP in NYC, colorectal surgeon in NYC) do a physical exam during this "outbreak" period and they all say "yes it is herpes" but I note a tentativeness in their voice as if what they are seeing does not entirely match their expectation. When the infectious disease specialist in Thailand took the swab on May 26 he said "this will hurt," it did not hurt at all.

2. My first outbreak seemed to fit the classic herpes symptoms: I had fever (for a day or two), some pain in my lower spine when I walked, tenderness and soreness in the lymph nodes in my groin, and difficulty urinating for 2 - 3 weeks. Since April 23, 2019, I have tested negative, twice, for the following: for syphillis, chlamydia, trichomonas, gonhorrhea, and HIV. I was positive for Mycoplasma genitalium (rectal swab) on April 23 2019, took 1 dose of Azithromycin and 2 weeks of doxycycline and tested negative on May 26 2019.

3. My initial symptoms appeared after I had receptive anal sex without a condom (for the first time). I was on PreP.

Questions:

1. What else could I possibly have that matches these symptoms if not herpes?

2. Could you recommend an STD specialist (maybe with herpes expertise) in NYC?

3. Are you available for a phone or video consult?

Terri Warren, RN, Nurse Practitioner

20 months ago

I think the diagnosis here is very unclear indeed. I would strongly suggest a herpes western blot which we can arrange, to get you clarity. You and I can do a video consult yes, to arrange this. You can arrange this at westoverheights.com, the home page box that says "Video consults". We can talk more than but I am not at all convinced that you have herpes at this point.

Terri

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