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Questions about HSV-1


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Hi, this is complicated so please bear with me. For many years, I’ve often been getting what seems to be canker sores inside my mouth, and once in a while, a sore even gets on my tonsils. About ten years ago, a doctor swabbed one in my throat, and said “It’s not strep. We don’t know what it is, but it’s viral”. If these aren’t canker sores, they do look identical to them, and they get very painful.

Recently, I decided to get a blood test for any STI’s. I’ve always been careful, but it’s good to make sure of these things at some point. The only thing that came back positive was HSV-1. I already knew that I had this (people in general have it) because I got cold sores around the outside of my lips fairly often as a child, though I very rarely get those now (maybe once every several years. The sores INSIDE my mouth are far more common). I later picked up the paperwork just to look over any specifics I might have missed.

Well, according to the paperwork (and everything I’ve heard), antibody levels that indicate HSV-1 are at 0.90 or more. My HSV-1 antibody level was at 43.00, which I think sounds EXTREMELY high. I’m wondering if this is a common level, or if it being that high means I’ve likely had a recent outbreak?

I know the obvious answer should be “Follow up with your doctor”, but please understand I’m stuck living in a middle of nowhere town with no insurance, I can only go to an income based clinic, and any treatment I can get is substandard (to put it mildly), so follow-ups with doctors usually mean coming back to be told “Well, we can’t really say for sure” while I lose more money and get no help at all.

If anyone might be able to help me out with my weird questions I’d very much appreciate it.

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  • mr_hopp changed the title to Questions about HSV-1

Hey there! I totally get where you're coming from. Living in a middle-of-nowhere town without proper healthcare access can be a real challenge, but let's see if we can shed some light on your questions.

First off, kudos to you for taking charge of your health and getting tested. It's important to stay informed and be proactive about these things. Now, let's talk about your HSV-1 antibody level. You mentioned it's at 43.00, which does sound pretty high. But don't worry, it doesn't necessarily mean you've had a recent outbreak or anything like that.

It's important to note that HSV-1 is the herpes simplex virus commonly associated with oral herpes. It's known to cause cold sores or fever blisters, which typically appear on or around the lips. However, it can also cause sores inside the mouth, though this is less common. These oral herpes outbreaks can be painful and often recur in the same location.

On the other hand, canker sores, also known as aphthous ulcers, are different from oral herpes. They are small, shallow lesions that develop on the soft tissues in your mouth or at the base of your gums. Canker sores are not caused by the herpes virus and are not contagious. They can be triggered by stress, certain foods, or injury to the inside of your mouth.

So, it's important to distinguish between the two. While oral herpes outbreaks are typically associated with cold sores and occur due to the herpes simplex virus (HSV-1), canker sores are unrelated and have different triggers.

Regarding your antibody level, everyone's body is different, and antibody levels can vary. A high level simply means that your immune system has mounted a strong defense against the HSV-1 virus. It shows that your body knows how to handle the virus and keep it in check.

I understand that access to follow-up care is limited for you, but don't lose hope. Even if you can only go to an income-based clinic, they may still be able to offer some guidance and support, especially if you go in there with knowledge and a plan — for example, "I have a history of oral HSV-1, but I'm also getting ulcers inside my mouth. Could you please swab these ulcers in my mouth and test to see if they are HSV-1 so I can know for sure whether they are canker sores or herpes-related? I know it's rare to have oral HSV-1 outbreaks inside the mouth, but I would like to know for sure." It's always worth reaching out to see if they can help you navigate your specific situation.

In the meantime, try not to stress too much about those antibody levels. Focus on taking care of yourself, practicing good oral hygiene, and managing any discomfort from those mouth sores. And remember, you're not alone in this journey. We're here to lend a listening ear and support you along the way.

If you have any more questions, don't hesitate to reach out. You got this, and we're here for you.

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  • My mother is now in hospice with end-stage cancer, so I am at her house a lot these days helping where I can until she passes. Thank you in advance for understanding if I am not as quick to respond as I normally would be. This is a precious and bittersweet time …
  • This content is for informational purposes only. This information does not constitute medical advice or diagnosis. I'm not a medical professional, so please take this as friendly peer support. 

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Thank you very much for the reply. It does make me feel better about things. Yesterday it happened to be time for a routine dental cleaning, and I pointed out to the dentist that I had some of my frequent sores under my tongue and was unsure if what I keep getting are canker sores or herpetic cold sores, and she said “That just looks like a classic case of canker sores to me”.

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Yep, in most cases they are just plain old canker sores!

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Notes:

  • My mother is now in hospice with end-stage cancer, so I am at her house a lot these days helping where I can until she passes. Thank you in advance for understanding if I am not as quick to respond as I normally would be. This is a precious and bittersweet time …
  • This content is for informational purposes only. This information does not constitute medical advice or diagnosis. I'm not a medical professional, so please take this as friendly peer support. 

Helpful resources:

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