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Atypical Presentation, Constant Symptoms

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So I contracted ohsv 1 about 2 months ago. It's always been atypical for me. I had a really bad reaction and don't seem to handle the virus well. When I first started showing symptoms, my face didn't break out with the typical lesions. Wherever the virus was at, my face would break out in hives. It's started in my lip then worked it's was up my cheek to settle right by my ear. My entire mouth, chin, and left cheek were covered with hives that would blister and ooze. So much to the point that my face would drip at times. Gross, I know. The itching was horrible. I went to see a dermatologist who swabbed the area and tested for hsv and bacteria. Both of which came back negative. She put me on steroids and called it a type IV hypersensitivity reaction. Fast forward 2 months, several rounds of antivirals, several trips to an immunologist, and $2k worth of labwork.... I had a positive IGG, but continue to test negative via swab. The hives no longer appear when I feel symptoms - they only appear when it's in an area that has never been affected before. I have constant itching or tingling in my face. I'm never symptom free. If it's going to be bad (lip swelling and pain) the spot on my cheek by my ear really starts tingling/buzzing.  I'm taking daily famvir, which I'm certain helps, but from what I've seen, this is a totally atypical presentation. I don't get the textbook sore on the mouth/face, but more spread out, milder symptoms that cover my entire cheek, mouth, and chin. 

Has anyone ever heard of anything like this?  Also, I've been reading that if you're experiencing any symptoms, you're likely shedding. I haven't kissed my kids in 2 months, since this all started. It's killing me, and them. Does anyone else who has constant facial prodrome know how contagious it is if u never get a sore? Do those who do get the classic lesions experience symptoms in between? Like it's always there and able to be felt?


Edited by BadThingsHappen2GoodPpl

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I've read your posts and see there is an amount of confusion here.

I am interested in the perspectives of the immunologist here, what is their thinking?

The rest is purely my perspective.

The most rational conclusion to reach here is that you have a childhood HSV-1 infection that gives you no issues. Further, your hives issue is just that, hives and is unrelated to HSV. Did the doctor explain that this is urticaria? Your swab indicates that this is not HSV or bacteria and that sounds absolutely correct.

It is quite possible you are experiencing an autoimmune issue. Most people will experience at least one such episode in their lives. It usually occurs after a virus such as flu or other virus that is not permanent in the body. After the virus has been removed from body or substantially killed off, the immune system is meant to stop making antibodies. Sometimes it does not stop and antibodies keep getting produced which is ultimately broken down into histamine and that it is probably the issue here. 

Another possibility is an allergy.

This is why I cannot fully understand the immunologists approach as it is quite likely that it is an absence of a virus that is causing the issue, not a virus itself. Did they have a view on autoimmune urticaria or allergic urticaria?

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Thanks for your reply. Are you medical by chance?

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I am. And I agree, it doesn't appear to be typical hsv. At least not like any I've ever treated. If you're comfortable with how well versed you are on the topic, I'd like to pm you to bounce my case off of you. I've seen a gynecologist, dermatologist, discussed in length with an immunologist, and have an appt with ID next month.  So far, none have been helpful. 

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Please do, I think we will both be able to learn a few things on immune issues!

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