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Couple with mouth and throat ulcer mystery

Jul 21, 2008 - 0 comments

In October of 2005, I had a "severely abnormal" type of small mole removed from my shoulder in a hospital. A few days later (a week or less), I started getting an ulcer or blister (I wasn't sure) on my throat. I thought I was getting sick. It was strange though because I came down with flu-like symptoms, but not till a few days after that. I went out with my current boyfriend for the first time during this time. I started getting a round blister on my throat. I popped it and it would go away and come back. A week or two later, I left for several months on training and kept in touch with my boyfriend. I started getting severe mouth ulcers all over my mouth, and over the next month or so they became unbearable. I would have at least 5 in my mouth at any given time - under the tongue, below and on the tongue, all over the soft palate and inside the cheeks. I would get a new one every day or so. Eventually (few months later) I would have them on my throat as well. They were so incredibly rampant, I went to a doctor and they did a swab of the sores and said it was aphthous ulcers. In March of 2006 (a month after I returned home), my boyfriend started getting these severe mouth ulcers all over his mouth. They became rampant and extremely painful for him as well.  We went to doctors, had complete workups and blood work and no one could figure out what it was. Neither of us had any genital sores but were tested for Herpes anyway. I have Herpes simplex 1 but he doesn't have 1 or 2. (We were checked again to be sure the results were true, and we received the same results). We have been to dermatologists, regular dentists, an oral surgeon, several medical doctors, an ENT specialist, an Infectious disease expert and have had biopsies done several times and no one knows. According to tests, these are not bacterial or viral and are not contagious. But we have the same sores!  Often the sores start out as little "dots," or tiny white or yellowish circles with reddish outline and they grow into ulcers.  If they aren't complete ulcers, they are small craters with no infection, or they are "dots" or just slight irritation on the side of the tongue or around the mouth. They are still frequent, although not as painful anymore. The large painful ulcers don't happen daily anymore, but I would say once or twice a month to once every month or two. The irritation (no visible sores) occur one to three times a week. We changed our diets and cut different things out, changed tooth brushes, tooth pastes, didn't kiss at all for 7 months! (we wanted to rule out the possiblity of passing it back and forth and it was also painful), we no longer participate in oral activities for fear of transferring them to other areas. He has since lived in a different state and we are both still getting them, but it's gotten better for both of us. One expert said I have behcet's disease, but I don't have any symptoms except for the mouth ulcers. My ophthalmologist said I do not have uvitis. Nothing fits together though. Everything I've read says mouth ulcers are not contagious, yet it must have been at some point. Herpes is not a possibilty, nor is behcets. I don't believe this is a coincidence, but no one has any ideas. I don't mind having aphthous ulcers, but I not convinced that is what the problem is if they aren't contagious since we both have the same thing. We have the same sores and the same occurrence of them, but I am also getting the throat ulcers and he is not.  In addition, I have noticed that I have had tonsilloliths for sometime, and I'm thinking that my tonsils are harboring some kind of bacteria or something.  I've also wondered if it's possible that participating in oral activities could have made them occur more frequently on the throat.  All sores are inside the mouth (none at all on the outside of the mouth or around the lips - ever), on the soft palate around the mouth and on the sides and underside of the tongue and below, not the gums and not inside the throat but on the soft palate of the throat - in front of the tonsils.  We have both had complete physical exams, blood work, viral cultures, biopsies, and all results have been normal, and neither of us has any other symptoms really except maybe headaches from time to time.  We've ruled out stress, allergies and diet issues, we've changed tooth pastes, pillows, had the water supply checked, completely replaced all dishes and anything in contact with mouth, compulsively cleaned everything, we've tried various medications and doctors in town aren't sure what's going on.  Even though it probably isn't relative, we both became vegan 8 months ago and the problem has improved for both of us since then. I would just like to know if this is going to continue to get better, if it will ever go away or if it will get worse, and whether anyone else has this problem.  This has been going on for almost three years now.  I know this is long but I wanted to include all of the facts. Thank you so much for your time.  We've both done a lot of research and any information you can provide will be greatly appreciated!!  

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