Recurrent HSV-1 for 24 years

[Lookingforanswers]

I am a 49 year old woman who was diagnosed with an initial outbreak of genital HSV-1 24 years ago. Unfortunately, my experience has not been typical. Despite the passage of time, I remain highly susceptible to outbreaks of genital HSV-1 following sexual intercourse. I am also quite prone to yeast infections. As a result I can have sex only infrequently and for short duration, and even then I always worry that it will trigger a herpes outbreak. The symptoms are much milder than the initial outbreak, but it’s still herpes and it has had a significant negative effect on my life. (I also get an oral HSV-1 outbreak around once a year, always following excessive sun exposure, but that’s not a big deal). My doctor gave me a prescription of valcyclovir to be used at the time of an outbreak. However, this does nothing to help prevent the outbreaks that occur due to sex.

I have been blood tested for HSV-1 and 2 three times, most recently last month, and each time the test comes back positive only for HSV-1. In addition, I was married for 20 years to a man who has HSV-1 antibodies but never contracted genital herpes, even though we didn’t use condoms. So I am confident that that HSV-2 is not at issue. Apparently, I am just one of those rare unlucky people who experience recurrent HSV-1.

Here are my questions:

(1) Do you think that a daily suppressive dose of valcyclovir might help prevent or minimize outbreaks caused by sex, so that I might be able to go back to a more normal sex life? If so, what is the recommended dose for suppression?

(2) I’ve read that the chances of passing genital HSV-1 to someone who already has antibodies from oral HSV-1 is very low. Is this because genital HSV-1 usually doesn’t recur frequently after the first year? Or would this also hold true for me, despite my history of frequent outbreaks? The reason I’m asking is because I have a new partner for the first time in 20 years, and since we intend to remain in a committed relationship, we want to know what the potential risk of transmission might be if we decided to stop using condoms.

(3) Is there anything else you can tell me about frequently recurring genital HSV-1? There is very little information online about this phenomenon.

Thanks!

[Terri Warren]

(1) Do you think that a daily suppressive dose of valcyclovir might help prevent or minimize outbreaks caused by sex, so that I might be able to go back to a more normal sex life? If so, what is the recommended dose for suppression?

You could definitely try that. The appropriate dose of valacyclovir is 500 mg once daily or acyclovir 400 mg twice daily.

(2) I’ve read that the chances of passing genital HSV-1 to someone who already has antibodies from oral HSV-1 is very low. Is this because genital HSV-1 usually doesn’t recur frequently after the first year? Or would this also hold true for me, despite my history of frequent outbreaks? The reason I’m asking is because I have a new partner for the first time in 20 years, and since we intend to remain in a committed relationship, we want to know what the potential risk of transmission might be if we decided to stop using condoms.

If this person has any history of cold sores, then I would say he is extermely unlikely to acquire HSV 1 genitally, Did you acquire your HSV 1 genitally at the same time you acquired this orally? It is so unusual that you have frequent genital outbreaks but not frequent oral outbreaks.

How do you know for certain that what you are experiencing are herpes outbreaks? Did you have them swabbed?

Terro

(3) Is there anything else you can tell me about frequently recurring genital HSV-1? There is very little information online about this phenomenon.

[Lookingforanswers]

Thanks – my new partner does have a history of cold sores so it’s good to know that the risk of transmitting genital HSV-1 to him is very low despite my frequent outbreaks. This has been a huge source of stress and worry.

Several doctors have told me it does look like a very common “atypical” (blister-free) herpes presentation. There is a burning sensation throughout the area, and sometimes small cracks or fissures and/or very small, shallow, shiny reddish irritated patches. I haven’t ever gotten actual blisters since the initial episode (which was most definitely HSV-1). I have been swabbed several times over the years – they have been negative but I was told this is not uncommon given the lack of blisters. I go to a clinic at the University of Washington medical center, and I feel pretty confident that they know herpes when they see it (as much as I wish it wasn’t).

I’m aware that my situation is very unusual. I am also very prone to chronic low grade vaginal yeast infections, and this has been suggested as a complicating factor. The theory is that the chronic yeast infections and the HSV-1 recurrences have rendered the skin in the area more delicate and prone to damage. No one has an explanation, however, for why my immune system is not able to keep the genital HSV-1 in check. Ten years ago I had a biopsy to check for autoimmune or other types of disorders, which showed that yeast had penetrated deeply into the skin but didn’t reveal any other diseases. One doctor told me that frequently recurring HSV-1 is rare, but that when it does occur, it’s as bad or worse than HSV-2. Very discouraging.

My follow up questions are:

(1) In addition to the 500-mg daily dose of suppressive therapy, what would you recommend for episodic treatment in the event that I notice symptoms of a recurrence? My current prescription calls for 1000 mg twice a day for one day in the event of an oral HSV-1 outbreak. I wonder if one day is enough, especially given my history of recurrent genital HSV-1 outbreaks.

(2) Is there anything else you can tell me about frequently recurring genital HSV-1? There is very little information online about this phenomenon.

Thanks!

[Terri Warren]

Do you go to the herpes clinic? Honestly if you have been swab test negative over the years with these particular symptoms, I would guess this is not herpes. It sounds far more like yeast, especially since you describe the yeast penetrating the skin. I have never heard of HSV 1 being as bad or worse than HSV 2.

You can go up to 2 grams twice a day for one day with recurrences. This is very similar to what you are prescribed, but double.

Again, I honestly don’t feel this is what is going on. To know for certain, daily home PCR swabbing over a period of a month would help clear up this question. You can combine 7 swabs into one vial and do it for four weeks. The cost would be $300 but I think it would really help you get a clearer answer. If you are interested at all in doing this, please contact the clinic for a phone consultation and we could set it up.

Terri

• This reply was modified 6 years, 11 months ago by Terri Warren.

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