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Recurrent intraoral herpes (gums)

I've been having HSV1 outbreaks in my gums (all over them) every single month, sometimes more than once, for over 5 years now..
I have been to general doctors, dentists, viral doctors, dermatologists and nobody has ever seen herpes on the gums so it always feels like I know more about the subject than the doctors themselves..
So I've already tried all sorts of approach: valacyclovir daily, L-lysine 500 daily, shots of iron (as i have iron deficiency and some doctors thought this could strengthen the virus..), ...
I honestly don't know what else to do.
Anyone fighting the same problem?
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207091 tn?1337709493
So if they aren't seeing herpes, what are they seeing? What are you seeing?

Has anyone cultured them to make sure it's actually herpes and not something else? They can do a PCR swab of the area(s) even if you aren't getting blisters. PCR swabbing is very sensitive, so if you have symptoms, it should find the virus.

Or do you mean that doctors don't typically see herpes on the gums, so they don't know how to treat it? There's something called herpetic gingivostomatitis, which is essentially a herpes infection on the gums.



It's more common to have it with your primary outbreak, and in children, but if you are immunocompromised, it's not uncommon to get recurrences of it. How bad is your iron deficiency? Do the shots bring you to within normal ranges? Are you considered immunocompromised?

There is another antiviral called Famvir that some with hsv1 respond better to. You might try that. If you are someone who gets periods, you might try tracking your outbreaks around your cycle, and see if you up your Valtrex a few days before your period helps prevent them. Maybe a food or drink is triggering them.

Lysine hasn't been proven to do much, though some swear by it. If it isn't working for you, save your money. If you try Famvir, it's probably more expensive, so put your money towards that.

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Hey! First of all, thank you so much for taking the time to review this.

The doctors I went to have all detected the blisters in my gums but they're unfamiliar with the subject. They have never dealt with herpes on gums which makes it all much harder for me.

I did a biopsy 4 years ago to one of the blisters and it came back positive for HSV1; thats why I'm so sure it's herpes, even though all the doctors I've seen have questioned it.
I know I'm not a doctor myself but I've already compared enough images of all kinds of mouth ulcers to be able to be 100% sure it's an herpetic infection (unfortunately).

As for the iron deficiency, yes, it's definitely related to the intensity of my periods and I can't seem to get my ferritin levels to the minimum even though I've tried taking iron daily for months and even had an iron IV once. Nothing brought my ferritin levels to normal ranges. Does that make me immunocompromised? I'm not familiar with the terms.

I've checked the link you sent me about herpetic-gingivostomatitis. How is this any different from "intraoral herpes"? From what I've read, it may be caused by several different things, being one of them HSV1, but does that mean I should have a different approach to it? I can't even pinpoint where I got this in the first place. It just started happening all over my gums in 1, 2, 3 or 4 places in my gums and hard palate..
It's really exhausting.

I've never tried Famvir. I'm currently living in Europe so I have to check if they have it here (or have another name for it). It's definitely worth the shot so thank you for this!

Again, thank you so very much for taking the time. It's so frustrating not to be able to rely on any of the doctors I've seen, so far..
Intraoral herpes affects bone-bearing tissues or keratinized mucosa (palate, attached gingival, or dorsal surface of the tongue) - https://dimensionsofdentalhygiene.com/amp/article/a-primer-on-common-oral-conditions/

Herpetic gingivostomatitis is when you get the sores on the gums or other soft, mucous areas.

Gingivostomatitis is the infection of the gums - herpes is what causes it in herpetic gingivostomatitis.

Whether it's on the bone areas or the soft areas, the treatment should be the same.

Famvir is famciclovir. It should be available in Europe, but I don't know about whether or not you need a prescription.

If you have certain types of iron deficiency - called anemia - you might be immunocompromised, which means that your immune system isn't functioning to it's full level. This means that your body can't fight infections as effectively as it might otherwise. There might be another condition causing the anemia that could be making it harder for you to fight infection.

One of my friends has anemia, and has to get the iron infusions every 6-8 months. Have you talked to your doctor about this? Working that out might help, too.

So it's definitely (recurrent) intraoral herpes.

It affects all three areas you mentioned (palate, attached gingival, or dorsal surface of the tongue) and it has never gone to any soft area inside my mouth, like cheeks or lips.
Also, the image that appears on the link you sent me (Figure 5) is exactly what I get on a monthly basis. And it moves around through the areas you mentioned.

I will definitely talk to my doctor about the iron infusions; there could be something there.

One more thing, I don't know how all this can possibly be related with the iron deficiency or the herpes itself but I do feel my body extremely dehydrated whenever I get an outbreak (severe cracked lips, really dry skin, less saliva.. ) and this happens all the time, regardless of the amount of water I take. It just feels like my body won't absorve it. Does this sound crazy?

I can't thank you enough for this, Auntijessie; it's been over 5 years since all this started and you're the first person to acknowledge the problem and come up with real solutions.
So I'm not an iron or anemia expert - not even close, but I did find this:

https://www.prevention.com/health/a20479000/iron-deficiency-symptoms/ - dry, cracked lips is a sign of being low in iron, as is angular cheilitis, which is cracking in the corner of your lips.

https://www.healthline.com/nutrition/iron-deficiency-signs-symptoms - dry skin and hair, dry mouth

I found a couple of things that mention that dehydration can accompany iron deficiency, but they don't say if it causes it, or how it's connected.

So my guess - and it's a big, big guess - is that when your iron falls really low, you get a herpes outbreak, along with all the other symptoms from the low iron, and you just basically feel terrible. If you need to, ask to see a hematologist, which is a blood specialist.

If you're feeling symptoms, they are real and it doesn't sound crazy.

And you're welcome. I'm sorry no one else has listened. Anemia isn't that mysterious, neither is herpes.

A note, though - you could be immunocompromised with the anemia. I don't know enough to say that for sure, but while you wait to find out, please be sure to take extra precautions with regards to covid. That would make you higher risk for complications from it.
I can't stress enough how amazing it feels to finally be able to talk about all this with someone who understands this condition.

I'll most definitely look for a hematologist to check the iron levels and see if it can be related to the recurrent herpes, somehow.

Thank you, thank you, thank you for taking the time to look into this matter, doing some research and for making me feel less like a crazy person :)
You're welcome. :) You are not crazy, and I'm sorry you've been feeling that way.

Keep me posted, if you don't mind. I'd love to hear what they figure out. Good luck!
Absolutely! ***
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