Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Tongue Issues and Mouth Irritations

Discussion in 'General Symptoms' started by sss_808, Oct 12, 2016.

  1. sss_808

    sss_808

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    Hi!

    1. I've been trying to find some information on this as it was already noted, it's not a high priority on the dr's list and not a lot of info out there. Wondering if any fellow CFIDS folks have experienced this.

    I developed something that looked like a geographic tongue after one of my viral reactivation episodes (when my Immune system was low). The tongue has continued for 3 years now, but it actually hurts. It looks like my taste buds are inflamed on certain sections of my tongue and I get these weird shapes with a white outer lining on top on my tongue what looks like a geographic tongue. Plus, cracks and other weird changes appear from time to time. It will change day by day, sometimes get worse depending on the how my immune system is fighting the viral load or not. It will also get irritated with spice and with rough textured foods, like pretzels if it is irritated.

    I had an ENT take one quick look and say, Oh Yeah, this is a geographic tongue. But, I thought they weren't supposed to hurt at all? I can't seem to find a dr' that can help me figure this out, but I know it has to be related to the viruses.

    2. I started getting mouth sores that come and go for 10 months now...but not like a canker sore. They never develop into an ulcer and all inside of mouth, not outside. I don't have cold sores. Red small circles and some larger spread out patches that look whiter in the middle and only on the inner parts of mouth like surrounding my teeth, not on my tongue. Some red spots remind me of hand foot mouth sores photos, but I've had the coxsackie for 4 years now, so why do they show up in the last year even after being on equillibrant herbal remedy?

    Viral Load:
    EBV
    Coxsackie A
    HHV6

    Wanted to know if anyone else has these issues with the tongue hurting and or the sores if you have EBV and or Coxsackie. Looking for any research or evidence or treatment of any of these viruses showing symptoms on tongue and in the mouth. I've heard of hairy leukoplakia for EBV, but my issue doesn't resemble this.
     
    Mrs Sowester likes this.
  2. Mrs Sowester

    Mrs Sowester Senior Member

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    Owch! That sounds sore. Just googled geographic tongue, that looks sore too.
    I have different tongue issues caused mostly by salivary duct stones, I get horrible ulcers along the edges and a huge ulcer under it. I also have a crenelated tongue, the bits that stick out can get inflamed and catch on my teeth, it can be miserable talking and eating during a flare-up. I'm waiting for an appointment to get an ultrasound to see what is going on.
    So not the same as you, but can offer some sympathy and say I kind of know how you are feeling.
     
    barbc56 likes this.
  3. Mary

    Mary Senior Member

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    @sss_808 - certain B vitamin deficiencies can show up on your tongue in various ways - http://calmag-c.com/2011/07/tongue-shows-b-deficiencies/

    We all seem to have trouble with the Bs, it might be worth investigating --

    I think it's possible the mouth sores might be related to a B vitamin deficiency also, but it would take some research. I read briefly that B12 and folate deficiencies can lead to canker sores.
     
  4. Webdog

    Webdog Senior Member

    @sss_808 When I get sores on my tongue/gums/mouth, I take 20,000 IU of Vitamin D3 for about 3 days and it almost always clears up. I first discovered this about 15 years ago, and this treatment has rarely failed me.

    From reading these forums, I think my response to Vitamin D is atypical. But Vitamin D is pretty safe and cheap, so perhaps give it a try.

    When tested, my vitamin D is always in the upper end of the normal range (25(OH) between 60-80ng/mL). As a maintenance dose, I take 5000 IU D3 daily.
     
  5. GracieJ

    GracieJ Senior Member

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    Utah
    @sss_808

    I have been been fighting a similar condition for months now. There is an odd sweet taste in my mouth that never leaves. At first, with the extra tiredness (among some other things, like added stomach distress) I began to wonder if I was diabetic.

    Well... it has been a long journey. I looked at candidiasis, mouth fungi, hairy tongue, etc. Nothing I tried worked to get rid of it... natural antifungals slowed it down, but never cleared it up. Reading this description of geographic tongue and looking at the pictures, I really wonder what this is, because all these descriptions fit... it grows thicker if not treated daily with the best remedy I have found, which is black walnut powder.

    I have used oregano, probiotics, Gentian Violet, garlic, cayenne, etc. with no success. Yes, I was painting cayenne powder on my tongue, thicker the better! and did not care... so awful tasting!

    I actually have been following a post-chemo blog and forum to learn more, as a similar condition shows up in cancer patients. Their take... nystatin and diflucan slow it down for a month, then it comes back...

    Then I read that this shows up most with B vitamin deficiency. I bought brewer's yeast and gave it a go... It definitely made a difference within a few weeks. After adding magnesium again to help with migraines, the tongue lesions shrunk more... a thin white layer rather than a thick, hairy looking mess. I am motivated to try more good vitamin supplements!

    Take a piece of burlap, smear it with peanut butter and honey, cover it with salt, and set it on the tongue... that is what it feels and tastes like!

    Right now, it looks exactly like the geographic tongue pictures.

    I happened to seek out a therapist on an issue recently who just happens to have ME, going on 28 years... I mentioned the mouth infection. He said he has had a fungus 3 times, and has had success getting rid of it using SBO (soil based organism) probiotics. He mentioned a specific one; I will message you with it later. That is next on my list to try, breaking the powder capsule directly on the tongue.

    I also read that these conditions are more common in people who have had Epstein-Barr in their systems for decades.

    So I still do not know exactly what I have, as I have not had money to have it cultured. There are only a few labs in the USA who can ID mycoses strains anyway. So hairy leukoplakia, fungus, candida, geographic tongue... whatever, it is a pain!
     
    Last edited: Oct 13, 2016
    rosie26 likes this.
  6. mermaid

    mermaid Senior Member

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    @sss_808 I often get soreness in my mouth, especially with the gums at the side seeming to swell and catch my teeth - worse when I have a cold.

    Also, and I am not sure if the soreness at the side is connected to this, I have a condition called Lichen Planus which is believed to be autoimmune. Mine started on the skin some 10 years ago, but then stopped on the skin, and ended in the mouth where it has stayed. They are whitish marks on the gums (called striae) though they can also be red and swollen. Maybe worth googling it and looking at pictures just in case it's this. Unfortunately once you have it, it tends to stay around, though I have managed to keep mine under good control with cutting out sugar from my diet. I am also gluten free which may help too perhaps and have a very good diet, and supplement with various things like the B vitamins and magnesium as mentioned above. So mostly I don't notice it any more, although if I look in my mouth I can see some residual marks on my gums.
     
  7. rosie26

    rosie26 Senior Member

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    I've had an odd sweet taste in my mouth for the last month. I can't recall ever having this before. Like you, @GracieJ I have wondered if I might now be diabetic. I will get my blood checked next time I visit my doctor.

    Another cause could be my sinuses. I have had an infection and it has been hard to shift. I don't want to take antibiotics if I can help it.

    Also, I get a sore mouth when my ME is deteriorating. Salivary glands feel sore and enlarged under the tongue.
     
    GracieJ likes this.

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