New outbreak

[Adezs]

Hi Terri!

Long story short, about five years ago a lesion on the right side of face, below my nose was diagnosed as HSV1 through a PCR swab. It was misdiagnosed as impetigo for years, despite flaring up repeatedly. Since then, I’ve had outbreaks in two new locations.

From what I’ve read it’s uncommon to spread HSV1 to the genital area. Well- it appears I have an outbreak there that flares up with each period. It seems to be ever present, never fully going away even while taking valcyclovir. Is there such thing as valcyclovir not working?

A week ago I noticed an outbreak on the left side of my lip. I’ve never had one there before. I’m treating with 2,000 mg valcyclovir a day.

I’m losing faith in the medical system. My doctor told me my HSV “changed” from HSV1 to HSV2. She ordered an IGM blood test that showed “negative for acute infection.” I requested an IGG but apparently I have to get that elsewhere. I intend to do the western blot.

My question is mainly concerning the chances of autoinnoculation. What is the possibility that I spread this to myself? What are the chances of me spreading it to my kids? I can’t imagine that I have been exposed to HSV2 as I’ve been in a monogamous relationship for 8 years now. My husband must be one of the lucky ones, as he’s never shown symptoms or developed any lesions.

There’s so much misinformation out there on top of a lack of knowledge, so I’m turning to the expert. Let me know your thoughts, and I appreciate your time!

Off note- I tried to schedule an appointment with you and sent a message to support because it won’t let me select an appointment time.

[Adezs]

A question I thought of later-

How common are outbreaks on suppressive therapy?

How common is a new outbreak while you’re on acute treatment (1,000 mg 2x day?) reason I’m asking is because I have new tingling as of yesterday on the OPPOSITE side of my mouth, meaning it could potentially be a third location of an outbreak.

[Terri Warren]

I think I’m missing something because I don’t see any documentation that the genital symptoms that you are having have been diagnosed as herpes. Has a swab test revealed that you have HSV one or two?

Herpes never changes from type one to type two. That’s ridiculous. And IGM testing has for a long time has been recognized as a poor test, and the CDC says never to do it, so your clinician made an error there in ordering an IGM test. Only IgG testing should’ve been done.

I don’t think for a moment that you have transferred HSV one from your cold sores to your genitals and that it’s lasting a while despite antiviral medicine and coming back every month. That’s just not how genital HSV-1 infection behaves. I don’t understand why you think you have HSV-2, but I could be missing something in your post as I also don’t see anything that tells me those genital symptoms have been diagnosed correctly as herpes. Can you please clarify?

Terri

[Adezs]

Sorry, I should’ve clarified that. I do NOT think I have HSV2. I have autoinnoculation fears. The genital symptoms generally don’t stick around enough for a swab. The first time I had them, my doctor ordered the IGM blood test and the results were “negative for acute infection.” This is when she suggested that “HSV1 (on my face) had ‘changed’ to HSV2,” which of course we know is ridiculous. Sadly so many doctors know nothing about herpes. I hate googling any kind of symptoms I may have- it’s always death or cancer. What is the likeliness of autoinnoculation to the genital area?

One thing I forgot to mention is that I have lupus. Probably would’ve been prudent to mention that in the first place. My body LOVES attacking itself. My primary outbreak is on the right side of my nose, but the newest one I had was on the left side of my lip. Can this continue cropping up anywhere?

[Terri Warren]

So I would suggest that you consider getting a PCR swab kit from 24/7 Lab and gathering the swab yourself when you have these symptoms that you think are HSV 1. BTW, HSV 1 recurs about once every other year on average so once a month would be a whole lot.

Terri

[Author]

Posts