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Mouth ulcers and Epstein bar

kelly8

Senior Member
Messages
191
Hi everyone,
I'm so glad this forum is here. I've been really busy working with my new functional med Dr and trying to get some improvement. We have been a little successful but in the process of trying to figure this all out i came across something very interesting that i thought i would share for those suffering with reoccurring mouth ulcers.

I have reoccurring mouth ulcers as well as vaginal ulcers (sorry if this is TMI but it leads to what i was able to find out). The vaginal ulcers since my early teens lead to a diagnosis of lichen sclerosis about 8 years ago. I've been sick since 2008 with the fatigue that has waxed and waned. It seemed like when i would "crash" i would get flare ups of the LS and mouth ulcers. As the years went on it got more and more consistent.

I've had lots of Drs try and tell me that they thought it was bechets. But my ob Dr confirmed it was not that. She was able to show me in a book what the ulcers would look like if it was bechets.

I recently went to the functional medicine Dr and he did a ton of tests. One of the things i tested positive for was ebv. Not just the high titers either. I tested sky high for the antigen d test. This is usually high within 3-4 months of an infection. I had mono in 1993. So it might be a chronic infection.

One of the less common side effects of ebv are mouth ulcers and vaginal ulcers. BINGO. When i started researching the mouth ulcers mine had originally started out looking like that. I went to my ob and told her about the test and asked her to show me what the ulcers would look like if that was what was going on. It looked exactly like when it started for me as a teenager.

So i know there is a subset of patients on here that have mouth ulcers that get really bad. I know I've spent many hours on here looking for answers. If you get these terrible mouth ulcers i would look to see if you can find a Dr who will order these tests for ebv. It might be an answer that no one else has considered.

I hope this helps someone!
Thank you
Kelly8
 

bertiedog

Senior Member
Messages
1,736
Location
South East England, UK
So i know there is a subset of patients on here that have mouth ulcers that get really bad.

I get recurrent mouth ulcers and have done since getting sick more than 20 years ago but for me they are a sign that my adrenals aren't coping and/or I have an infection or virus brewing. I will then usually start taking the herb Andrographis at high doses and also increase my steroid a little. That will usually help within days but before I was put on a steroid nothing seemed to help and the ulcers were agony.

When tested several years ago although I had 6 Herpes type viruses over the range EBV showed up in the normal range but I did test positive that I had indeed had the virus in the past but until then I wasn't aware that I had indeed ever had EBV.

Pam
 

boombachi

Senior Member
Messages
392
Location
Hampshire, UK
I know this post isn't asking for home remedies but in case anyone's interested, I used to get huge mouth ulcers one after another along with various other infections. This has calmed down now but I still get about one a month. I mix a teaspoon of bicarbonate of soda in a glass of water and swish it around my mouth for a minute as often times a day I can (once every hour if possible). This usually clears it up in a couple of days. Myrrh tincture works too but tastes disgusting so I stick to bicarbonate of soda.
 

frederic83

Senior Member
Messages
296
Location
France
If you mean canker sores, I used to get them once in a while before CFS, since I've excluded gluten and milk I never had one. It might be not enough for chronic ulcers. I have EBV and it is the only pathogens I've found.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Any time there’s a trauma in your mouth (which the inside of your mouth is always getting tiny microtraumas in the mucosa), the immune system sends WAY too much TNF-α into the fight. And instead of just wiping out the injured cells, they keep going, popping cells left and right until a crater forms. And there’s your ulcer.

Because people’s hormones fluctuate, sometimes your body overproduces and sometimes it doesn’t. But studies have shown that an overproduction of TNF-α often coincides with a deficiency in a type of vitamin called Cobalamin – also known as B12.

Source.

TNF-a is also known to be high in MECFS. From MEPedia:

TNF-alpha has been shown to be often elevated in the serum of patients with ME/CFS compared to non-ME/CFS controls and is theorized to play a role with other cytokines in symptom presentation and severity.[3][4]
 

kelly8

Senior Member
Messages
191
@Runner5 Thank you for that info. I'll check the video out.

@boombachi thank you for that info. They've given me dental steroids but it is so gross. As I've been adding in lauriciden my symptoms first flared and then have not come back as bad. I read that lauriciden is supposed to reduce viral load for ebv. I'm hoping this helps reduce my ulcers. I guess time will tell...

@Ema thank you for the links. That is interesting info. I'm wondering why ebv would cause mouth ulcers. Perhaps it causes microtrauma, or maybe it increases the tnf-a further?
 
Messages
12
Location
N. California
Hi @kelly8, what are you doing for pain relief? I also have sky-high ebv levels.. I am dental hygienist by trade and for the past 7 years I have been in a unique job working with a lot of dentists who are treating patients with oral lesions. They still don’t know what exactly causes apthous ulcers but there are predisposing factors that will exacerbate an outbreak such as sunlight, wind, stress, chemicals in the mouth, immunosuppressive agents, etc ...

one product that is supposed to be amazing for pain relief is MuGuard - it is prescribed a lot for oncology patients who get horrible ulcerations in their mouths www.muguard.com. Also, maybe take a look at the ingredients on your toothpaste and/or mouthwash - for daily oral care go with an all-natural product such as Spry (organic, non-gmo) that does not have sodium laurel sulfate (Toms is not all natural despite it’s reputation). Crest (especially ProHealth) causes a LOT of issues with mucosal tissue and Colgate Total’s triclosan can wipe out too many of the enzymes, mucins, and healthy flora we need, leading to mucositis, apthous ulcers, and giant apthous ulcers (these are not bad products but those of us with special health concerns need to avoid a lot of ingredients in the major brand name dental products).

Spry also has a healing blend mouthwash, a mouth spray and a moisturizing mouth gel that a lot of dentists, oral surgeons, ent’s, etc are giving their patients who suffer from lesions or who are healing post surgically after head and neck surgery.

A couple other great OTC products to try for relief are Mouth Kote (also all-natural)and a new dry mouth gel by OraCoat - designed for dry mouth relief but is very soothing on irritated mucosa. But for everyday prevention of the ulcers definitely try the Spry line - I’ve heard countless testimonies (including myself) of people who stop getting apthous ulcers when they switch to that brand.

And, as someone else posted here, the baking soda rinses are wonderful and very soothing. There is an rx topical steroid with a numbing agent called Kenelog with Orabase- it is grainy and hard to keep on the lesion, but it really works well and a lot of times the lesion does not return in the same location after Kenelog has been used.

I hope this isn’t tmi - it’s one subject I know extensively, lol. If you happen to live in Northern California I can recommend a dentist who only does oral pathology treatment.
Best of luck and let me know if you have questions I can help with from a dental perspective.
 
Last edited by a moderator:

kelly8

Senior Member
Messages
191
Thank you @JulieRDH !
I'm so sorry you have to suffer with this too.

That was wonderful and very helpful info. Long ago i switched toothpaste to a more natural brand but i may need to look into the spry products. I was using the primal pit paste dry toothpaste but it was a bit grainy for me. The most natural product i could find at cvs was therabreath. It's not exactly ideal so I'll definitely check that out.

Do you happen to know anyone in that field in mass? My dentist has offered multiple times to burn the ulcers out. But since they usually come back at least once a month that doesn't seem to be a viable option.

I know they don't know what causes it but wouldn't it be interesting if they tested people for ebv who get these mouth ulcers? Especially since it is listed as a side effect of the disease. When i was able to make the link i felt like i had just discovered my own personal health lottery. Now I'll have to see what happens when we try to treat it...
 
Messages
12
Location
N. California
Hi @kelly8, If your dentist uses a laser to treat the ulcers that would be a good and effective option, but if he/she is using an old-school electrosurge machine I would avoid it, too. (Lasers are amazing for this)

Not trying to advertise or anything, just based on knowledge and testimonies, if you get the Spry oral gel, it is so mild and gentle you could also use this on the vaginal ulcers... (women who know about this off-label use will use the gel for yeast infections as candida cannot metabolize xylitol).

I posted on facebook for recommendations of an oral pathologist in Massachusetts and the amazing Eva Grayzel (stage 4 oral cancer survivor) replied that Dr. Mark Lerman at Tufts is who see. It looks like he also specializes in infection and immunity. https://dental.tufts.edu/people/faculty/mark-lerman

Best of luck... please keep us posted on your progress!
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
I'm late to the thread, but I get canker sores as well, and find that too much arginine in my diet (nuts, chocolate, seeds, coconut, etc.) can prompt an immediate outbreak if my lysine level is low.

First time I really noticed this was after switching to a Tom's brand toothpaste that includes arginine. It gave me a horrid outbreak and lead me to discover I had low lysine as well.

I am currently at the tail end of an outbreak after eating too many nuts and too much dark chocolate over the holidays (and I had gotten lazy about daily lysine). I was also trying to use almond milk and less dairy. It really screwed me over. Dammit.

Anyway, that might be another issue to consider if you have outbreaks.