Endless resistant outbreaks HSV-1 (immunocompetent)

[Neverending OB]

26 y/o male. I contracted HSV-1 orally from my unknowing partner in November and had a horrible first outbreak with debilitating flu symptoms and unbearable sores. 90% intraoral with only one or two sores on my lip.

In December and January I had maybe one small mouth sore every couple weeks, but in February/March it just became endless. Constant intraoral mouth sores. I was using episodic therapy but I was getting a new sore roughly every 3-5 days so it was unclear when an “episode” even began or ended. and yes they are definitely HSV-1, they are in roughly the same places, can spread to my tongue if I fuss at them too much, and are smaller than canker sores, and often but not always in groups. Occasionally I get them on my lip but they are often very small. Even though I don’t pick at them they sometimes end up leaving scars! Several of my worst intraoral sores also have left long term/permanent damage inside my mouth.

I started suppressive therapy in May and saw little to no change, 1 gram a day of valacyclovir. In June I’m certain I contracted genital HSV-1 somehow from my partner (or myself) through our sex. Huge pain in my genitals and rashyness on my thighs and then on my genitals. Only visually confirmed it was HSV and not something else like chaffing or a UTI two weeks ago, when I found very classic HSV sores on the head of penis, that are identical to the ones I get in my mouth. Since june I’ve had constant itching around my genitals and butt, and frequent rashes that could be herpes, and then some sores that are much more clearly herpes.

I’m immunocompetent, I always get over illness incredibly fast. I’d been taking a gram of valacyclovir daily for months and it hadn’t helped. I have sores in my mouth/on lip and on/around my genitals most of the time, and daily prodromal sensations on my lip, and inside my penis, thighs, and butt. I stopped the valacyclovir a week ago and I don’t think it’s gotten better or worse.
Please help! I don’t know what to do..

[Neverending OB]

In case this helps this is my meds history:

No meds prior to December.
Finasteride for hair loss: mid January – mid June
Valacyclovir episodic 4grams: December – April
Valacyclovir suppressive 1gram: May – last week
Buspirone for anxiety February – early May
Adderall for ADHD: 1-4 times a week March-May. None in June. Daily mid July through now.
Lysine 1 gram-2grams: daily December-Today
Wellbutrin: July-Now
Propanolol: July-Now

I had on average 5 alcoholic drinks a week March through June. I’ve had at most 1 drink a week or less since July.

[Terri Warren]

I’m guessing that you know what I will say here, but I’ll say it anyway. You need PCR swabs of all of the things that you are certain are herpes.
1. Valtrex isn’t making any change in the outbreaks
2. It is highly unusual to get HSV 1 in a new location after having it orally unless you acquired it orally and genitally at the same time and are only now getting genital outbreaks (it happens)
3. It is unusual to have so many intraoral sores on a constant basis.

I am assuming that at some point, you had a positive swab for HSV 1 from all of the sores in your mouth, correct or not correct?

TErri

[Neverending OB]

I’m hoping to try swabs soon, but last time I tried they wouldn’t do it because the sores weren’t ulcerated, and I think I’ll run into that issue again. Most of my sores in mouth go from looking like a red rimmed pimple or group, to healed, and my lip and genital ones go from rashy blisters to scab without clearly leaking fluid, only mildly raised instead of large vesicles.

My reason to believe they are herpes is that:
1. they reoccur in roughly the same spots
2. I get prodromal symptoms very consistently, tingling/burning/pins and needles in a small area. Whenever I look at where i had the feeling there is nothing there, but then the next day there’s a sore.
3. I had never had sores inside my mouth prior to getting herpes.
4. I had never gotten a sore on my lip of any kind prior to getting herpes, since you can’t really get a pimple on your lip, but now I get them on my lips and experience prodromal sensations in the spot they are going to appear.
5. I had never once in my life gotten a single blemish on my penis, and now I constantly SUDDENLY am having a red rash on my penis consisting of mostly red skin but also some more raised blistery looking areas. Also some of the same on the head of my penis where there’s no chance it could be folliculitis or some other misidentified thing. It keeps healing up and scabbing slightly after, but then reappearing on a different part of my penis just a couple days later. This is accompanied by nerve pain and itching which I have never had in my penis thighs or butt prior to June, but now I have on a daily basis since then. When I contracted it I had horrible unexplainable shooting nerve pain in my penis on and off for a week, and then after that the sores started. I got a full STI panel after that, and it all came back negative.

I know this is highly unusual, that’s why I came to you, because you’re an expert and conventional knowledge about this illness has failed me. Please try to believe me and help me figure this out

[Terri Warren]

I’m confused. Are you saying that you’ve never had a positive swab test for HSV 1 or are you saying that you’ve not been able to have what you believe to be recurrences swab tested for HSV 1?

And you are also saying that all the antibody tests have been negative as well?

Terri

[Neverending OB]

I’ve blood tested positive for hsv1 twice since getting it in November. I’d blood tested negative for it years prior.

I went to the doctor today and they said they do believe the sores in their behavior and appearance as well as my many prodromal symptoms confirm that it’s almost certainly all herpes.

The doctor also didn’t have a good idea of what was the cause of the unrelenting frequency since I don’t have a known immunodeficiency.

Not that you could guess my issue, but in your experience, what underlying issues have caused constant outbreaks in others that may be worth me getting tested for? I’d really appreciate you offering me any ideas for a path forward instead of assuming I’m incorrect about my condition.

[Terri Warren]

Unfortunately, I just don’t know what would be causing almost constant HSV 1 outbreaks. I am assuming that you’ve had a full immunologic workup to determine that you have no underlying immune system issues.

By the way, I didn’t say you were incorrect about your condition – I only suggested that you obtain swabs to confirm a diagnosis, something I would say to anyone who had recurring symptoms that were atypical for the condition you describe.

I certainly hope you can work with your doctor to figure out what is happening here. If you were my patient, I would obtain cultures from a genital outbreak first to determine that this is definitely HSV 1 but when positive, as you believe they will be, send the swabs for acyclovir resistance testing. it seems to me that is a very normal path forward, given that you say the medicines are not helping with the outbreaks.

Terri

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