PCR results came back positive

[yellowanxiety]

Hi. I sent you messages earlier about worrying about spreading oral HSV1 to my genitals. I have been off valtrex for amost a month and after getting off the valtrex suffered a huge cold sore outbreak on my lip that is still not fully back to normal (there is still some swelling and discoloration on the corner of my lip). I hope it goes back to normal. About a week ago I also developed painful sores on the roof of my mouth. I tested the sores on the roof of my mouth 2x with PCR testing, on day 1 when I first noticed the pain on the roof of my mouth (roof of my mouth was red and swollen and starting to form lesions) and again 2 days later when the sores were open and more developed. The first PCR swab came back neg so I was initially hopeful that it was not HSV but the second swab came back positive for HSV.  This pretty much confirms that the oral sores in my mouth for the past 9  months have all been herpes simplex and not some autoimmune condition like Bechet's. I honestly was hoping the swabs would come back negative.  This makes me realize that I obviously am immunocompromised given my body is not able to keep this virus latent (i have been having weekly to biweekly outbreaks since January 2022). Prior to January i would only get cold sores on my lip maybe 1x a year for the last 20 years. I can only conclude that something happened in the last year that destroyed my immune system. I think it is related to the COVID vaccine.  I also get new sores on my genital region for teh past few months and now am thinking that it is likely they are also hsv due to the fact that my immune system is not able to fight off hsv maybe my antibodies were not able to protect me from autoinoculation. I am still awaiting to PCR swab test the genital sores. I am staying off the valtrex to be able to get an accurate pcr test result when I swab the sores in my genital region.

[auntiejessi]

Okay, so you know that the sores in your mouth are hsv1. That's part of the answer. You knew that you had that.

The covid vax might have triggered some of this, though it shouldn't have lingered this long. It also wouldn't cause you to be immunocompromised. Something else might be, though, and you need to work with your doctor on finding the cause of that. Some simple blood work would be a good place to start.

Your husband needs to test.

[yellowanxiety]

I think I have read in some forums that some others who had COVID/vaccine have had issues with frequent HSV sores for a year or longer as well. I say that only to point out that I think it could still be COVID related. I don't know how long this will last...that is the most frustrating part. It could go on for years or possibly never return to my usual baseline?
I hypothesize that covid/covid vaccine does cause immune dysregulation that we do not fully understand. This is probably why people are getting reactivation of latent infections such as hsv and ebv and also having autoimmune issues. My husband actually recently developed alopecia areata a few months ago and saw a dermatologist. He has never had hair loss issues in his life or autoimmune disease. His dermatologist who has 30 years in practice believes his alopecia is related to COVID.   I did see an ID doctor to do some workup and everything he tested came back normal. he did not feel the need to test CD4 and CD8 numbers.

My husband has already gotten an HSV-1 igG blood test about 2 months ago and it came back negative. My understanding is that there is a 30% chance it is a false negative. Do you think he needs to get a western blot?  He has never had a cold sore or any genital sores and has only been with me (I am his first and only gf/wife).  

[auntiejessi]

I won't pretend to understand covid. Most doctors don't, and I can't begin to understand what it's done to my own body, much less anyone else's.

From what I have read here and in other places, people generally calm down after the vax within several months. I can't say that about covid - every single person is different. I can line up 10 people who've had covid, and there will be 10 different outcomes.

We have already talked about the HSV1 IgG false neg 30% rate. If it were MY husband, and he wouldn't kiss me, for sure he would be taking the Western Blot. Even if I was the only woman he'd ever kissed romantically, he could have gotten it from his mom, dad, aunt, uncle, grandparents, etc. That's how most people get it. My nieces and nephews had it before they were 10. Neither of their parents get cold sores. It doesn't mean they don't have hsv1.

We've been over all of this already. Continue to work with your doctors, and let me know when you get a genital PCR test.

[yellowanxiety]

Thanks for your insight. I do think that you are right, COVID is extremely unpredictable and everyone has a different response to it. I think for me, my gut is telling me that is what is causing my recurrent oral issues because I can't think of anything else to explain it.  

I was thinking of asking my husband to get western blot done just to be certain that he doesn't have it.  How would I go about getting the western blot for him? I don't think it is a test I can order online?

Yes, I will report back to you on here when I have the PCR tests done.

[auntiejessi]

You can get it through Terri Warren - https://westoverheights.com/getting-a-herpes-western-blot/

Or your doctor can order it, or his doctor can.

[yellowanxiety]

I got a new pimple-like sore that looks like a pustule on my upper thigh next to my groin. I went ahead and opened it and swabbed the fluid and sent it for PCR testing for HSV. I am nervous it will come back positive and praying and hoping it will be negative.  I will let you know what the test says when the results come back.

[auntiejessi]

I'm glad you were finally able to get some swabbing done. Definitely let us know what the results are when you get them back.

[yellowanxiety]

I did my swab using 24/7 labs which I understand are PCR swab tests from home. I opened up the pimple like looking thing to get the fluid on the swab and then mailed it that same morning. The report came back negative just now for HSV1 and HSV2. I am somewhat relieved because obviously that is what I wanted to see but for some reason, am not buying it. Now I am questioning if my swab was not timed properly or is it possible that sending  it in the mail and them not being able to test it for a few days may interfere with accurate test result, or maybe I did not collect a good sample and get enough fluid.  I guess I feel like I probably need to do a couple more PCR swabs to be sure and feel more confidant that there was not some sort of issue that caused a false negative., Or maybe that one was a pimple and another sore is not... You can tell I am not over this.  To top it off, my 3 year old has a couple or red small bumps on her outer labia which popped up recently and I started freaking out. She doesn't wear diapers so this is not likely to be diaper rash. Now I am wondering if it is possible I accidentally spread herpes to her from my hands when i changed her diaper or something. I obviously have never ever done anything inappropriate to her and i understand sexual abuse is a cause for hsv transmission to minors.  I am freaking out!

[auntiejessi]

Listen to me.

We have been over this again and again. Your genital symptoms do not sound like genital herpes. Your testing is indicating that it is not. I don't know what it is that won't let this go, but you need to get some therapy for this. If you can't accept the science behind this, it's time for therapy.

You have done other PCR testing from home, if I understand correctly. You know how to do this. Accept the results. It is not genital herpes.

I do not know what is on your child's vulva, but the ONLY way that she would get genital herpes from you, or anyone, is inappropriate sexual contact. If you suspect she has genital herpes - and it's a huge leap from red spots to herpes - then you have a responsibility to her to get her checked out.

Children can get yeast infections or other fungal infections, so get her checked. You did not give her herpes unless you are sexually abusing her.

You also need therapy, ASAP. I suspect your husband isn't helping anything, but you're responsible for you and your child. He's responsible for himself.

I suspect strongly that I am not the first person to tell you any of this. Please, help yourself.

I have offered all the help I can give you. Please, for you and your child(ren), get some therapy, ASAP. I wish you nothing but the best. I'll be requesting that this thread be closed.