HSV 1 questions…background first and questions to follow

[October123]

Background:
Female
PCP did a screening in 2015 and everything was normal except HSV 1 blood test was positive (test used unknown). I had a routine test in 2016 I had a Igg blood test that showed I was negative for HSV 1 and HSV 2.
I was told I had fever blisters as a child (not sure if this was ever confirmed w/ swab. I don’t recall having cold sores.)
In 2018 my husband went to the dentist and within a couple weeks had a small sore on his lip. Never swabbed the sore. During this time I developed mouth sores all over my gums, cheeks, hard palate and tongue. I also had a sore throat. The tests came back positive for strep and the PCR swab was positive HSV 1/negative HSV 2. Diagnosed with primary HSV 1 intraoral infection and strep. I questioned this since I had a positive HSV 1 blood test in the past and had been told I had cold sores before.
I know HSV 1 is common. The oral HSV 1 diagnosis doesn’t bother me. I was more concerned that my situation didn’t seem typical. I also was concerned about passing it on to my genitals, my husband’s genitals, etc. I now know this is very unlikely to happen, especially since I think my husband has HSV 1 orally as well. I do get recurrent pimples on my buttocks and thighs and have also had cysts. I do have sensitive skin and feel that I get chaffing from my underwear rubbing, tight clothing, etc. I do get paranoid about every little bump, burning sensation, tingle below the belt and question if it could be herpes.
2019: started suppressive Valtrex 500mg daily. I was on this for 3 months and the day after stopping I started to get facial tingling/sore started in my mouth. I was put back on Valtrex 500mg daily with no end date. I feel this has helped. Few recurrences.
My husband and I have dealt with miscarriages. I questioned if it could possibly be due to the daily Valtrex and done some research/talked with OBGYNs. For this reason, I have decided to discontinue the Valtrex before becoming pregnant again and see how it goes.

[October123]

Last dose of Valtrex was on 10/8/22. On 10/10 I started to get mild mouth sores. Since stopping I noticed that my left labia tingle sometimes and anal itching/burning. I’ve had genital tingling/burning before. There are no sores/redness. I do have a lot of scars on my thighs and buttocks from acne. Yesterday all the symptoms were gone and now returned again today. When I went to shower today it did burn initially to put water on the crease between my buttock/thigh making me think there is some broken skin. No pain with soap or further washing. I again examined and saw nothing. I don’t know if this just is a coincidence since stopping the Valtrex or if I should be concerned. I feel I am more hypersensitive to everything right now and nervous since stopping the suppression therapy. I have even noticed lightning bolt feelings on other parts of my body as well.I feel I get major anxiety about any bump or twinge below the belt and I have no reason to be nervous. No concern of cheating. My husband and I have not had oral sex since my diagnosis in 2018 and I’m pretty sure I was very careful not to autoinoculate myself.

Questions:
-Was the HSV 1 blood work more likely to be a false positive in 2015 or false negative in 2016? Primary outbreak in 2017?
-Do you feel losing the 60lbs and giving up carbs and sugar for 8 months could have changed my body enough to reactivate the virus once I started eating a regular diet again?
-Have you seen cases where a child has OHSV1 with few outbreaks to then switch to having many outbreaks as an adult?
-Have you seen outbreaks that were outside the mouth to then switch to intraoral?
-Have you heard of problems w/ suppression therapy during a whole pregnancy?
-Do you think the feelings I am currently having on my buttocks could be a coincidence after stopping Valtrex? Especially if I am not seeing any cuts or sores? Chaffing?
-Do you think I could have passed HSV 1 to my genitals and it just show up now when I stopped the Valtrex?

[October123]

I just want to clarify that I have never had any genital sores/ulcerations. I’ve had a pimple or two in my bikini line that I had looked at by my PCP and was told it wasn’t herpes. I also want to clarify that the tingling I’ve had in the past has been all over including buttocks, thighs, genitals. Sometimes it would last for months. I also do have back problems so I sometimes feel it is from something pinched in my back. Since stopping the Valtrex the tingling, burning, and itching were all in different locations. The tingling was in my labia, there was itching in the anal area and the the burning was more so in the crease of my buttocks and thigh. The symptoms are coming and going. I still don’t have any sores/ulcerations. I feel I am overthinking it and need to relax. As many other posters have said, I start reading things on google and then freak myself out.

I also want to clarify that I was started on suppression therapy in 2019 for recurrent mouth sores. I just find it odd that I have not had any cold sores on my lip or nose since having the confirmed PCR swab in 2018 and all the recurrences are only in my mouth. I’ve had other work ups since 2018 which included STD testing, autoimmune testing, vitamin deficiencies, etc. Everything came back normal/negative.

I am just looking to get your thoughts, answers to my questions above in the second post and input on everything. Thank you so much for this forum and for your time!

[Terri Warren]

-Was the HSV 1 blood work more likely to be a false positive in 2015 or false negative in 2016? Primary outbreak in 2017?
Without knowing the index value associated with the positive results, I just have no idea. Sorry.

-Do you feel losing the 60lbs and giving up carbs and sugar for 8 months could have changed my body enough to reactivate the virus once I started eating a regular diet again?
No, I doubt that very much

-Have you seen cases where a child has OHSV1 with few outbreaks to then switch to having many outbreaks as an adult?
Well, I have but probably only in situations where the person is pretty immunosuppressed or is taking immunosuppressive medication.

-Have you seen outbreaks that were outside the mouth to then switch to intraoral?
Rarely

-Have you heard of problems w/ suppression therapy during a whole pregnancy?
No, though I know it is not recommended

-Do you think the feelings I am currently having on my buttocks could be a coincidence after stopping Valtrex? Especially if I am not seeing any cuts or sores? Chaffing?
I think you sound very conscious of body sensations and I doubt seriously that this has anything to do with HSV 1 genitally.

-Do you think I could have passed HSV 1 to my genitals and it just show up now when I stopped the Valtrex?
No, and if you did, HSV 1 genital infection is quite a quiet thing anyway.

So let me understand – we know that both you and your husband have HSV 1 oral infection but you’ve given up oral sex since 2018. Why is that?

Terri

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