Recurrent, Antiviral Resistant GHSV1 Outbreak

[smibby4]

I’m on my second month of a GHSV1 outbreak (diagnosed two years ago and had only infrequent/mild outbreaks until now) that lingers for about two weeks and then dissipates for a day or two. It remains in the same place. As far as I know, I am immunocompetent. My doctors have tried Valacyclovir and Famciclovir both to heal the outbreak and to suppress further ones, and neither worked. Famciclovir reduced the severity of one outbreak and has not yet helped the one that’s followed.

Two months ago, I began hormonal birth control pills and started having sex with my boyfriend. When the outbreak started, I discontinued the pill and opted for a copper IUD. I know my body to be particularly sensitive to anything I put into it and also prone to random, severe allergic reactions. This is to provide context and to say that while I have no autoimmune diagnosis, I’m definitely more sensitive than most.

My doctors are at a loss, and the doctor’s they’ve referred me to are at a loss, and I need help determining what steps are left for me now that I’ve exhausted typical medication options. I have also tried sleeping more, watching what I eat, and more homeopathic options. I have two questions:

1) What treatment options should I ask my doctors to look into?
2) In other words, are there any tests I should request to find out what’s causing me to have such an unusual experience, and are there any specific kinds of specialists I should see?

Thank you for this resource and for your expertise- I’m lost and desperate.

[Terri Warren]

If you were my patient, I would very first confirm that this is an outbreak of HSV 1. Very often, people who report having prolonged outbreaks are not having an outbreak at all but rather something completely different. HSV 1 rarely recurs when it is in the genital area, much less lasting for months. I would bet a lot of money that something else is going on here. Have swab tests been done on these outbreaks?

Terri

[smibby4]

Swab tests have been done which confirmed that this is an HSV1 outbreak. I also requested a bunch of other testing including the whole gamut of gynecological swabs and bloodwork to check on my immune function and anything else my doctor’s could think of. Everything looks normal. Just today, it recurred again after a two day break, and I’ve still been taking 250mg of famciclovir twice a day. I’ve sought referrals to Infectious Disease and other specialists who seem equally confused. I also asked for the swab test to be sent out for resistance testing.

What could be causing this, and what options do I have left to make it stop? In your experience, is there any chance that this is just my life now? I’m terrified that it won’t end.

[Terri Warren]

So you said swab testing has been done to confirm that these long outbreaks are due to HSV 1 – how often has that been done?

Terri

[smibby4]

Just once, almost a week ago. Doctors said it actually looked like folliculitis but it tingles and burns like an HSV outbreak, and it certainly did look like HSV when it initially came up two months ago- it even turned into an ulcer at that time. I should also mention that I was initially diagnosed two years ago, and they said that it looked like folliculitis at that point too.

The common denominator here seems to be sex- I notice a recurrence, wait a day or two after I think it’s healed, have sex with my boyfriend who is a relatively new partner of mine, and then notice an uptick in symptoms a day or two later. It doesn’t scab over anymore, just kind of calms back down. We’ve been using lots of lube and I’ve been on extremely high doses of suppressive meds the whole time.

My doctor raised an interesting question- could this be an outbreak that has turned into folliculitis if I haven’t given it enough time to heal before having sex again? And my therapist asked a different question- could I be “allergic” to my boyfriend and our mismatched body chemistry is just causing recurrences? I think the former explanation is more reasonable than the latter.

Either way, this continues to be a problem with no end in sight, although the turnaround time is seeming faster each time. I am desperate for it to stop. I need my life back.

[Terri Warren]

I doubt that you are allergic to your boyfriend nor do I think this is an outbreak that turned into folliculitis. It is more likely that the friction of sex could be a trigger for you. I also doubt that you are having constant outbreaks with genital HSV 1, but since you had one positive swab, you were at least, at that time, having an outbreak.

Has your boyfriend been tested to know that he doesn’t have HSV 1 already? If not, he should be tested or if he has ever had a cold sore we know he does.

The other option for you here is to have a culture swab done (not PCR) when you are sure this is an outbreak and send it for antiviral resistance, which is rare, but could happen.

Terri

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