I have a disorder that I see many people describing online -- always unresolved.
It is a very real medical disorder but either it hasn't been identified it yet, or it's burried so deeply in the literature that doctors don't have the time available to invest that it would take to diagnose it in we frustrated web population. Maybe, since it seems to pose no apparent health threat, doctors don't feel it's urgent to identify.
The condition is symmetrical (left/right) white lines running along the edges of my tongue. They vary in size and thickness from day to day and can grow/retreat in a matter of hours. They are rubbery like wet callouses on your feet and can be scraped at with a fingernail of bitten off. It is painless but leaves the tongue red and raw after it is mostly removed.
I've had the condition for about 12 or 13 years. I remember the first day I had it, waking up in the morning and feeling it in my mouth. It was unmistakable since one can actually bite pieces of it off. I've been to a half dozen or more doctors and dentists about it and tried several things. At first the doctors/dentists always tell me: you're crazy, it's always been there, just elongated papilla -- as though it would be possible that I could have simply not noticed it for 20 years.
Things I've found out over the years:
1) It's Not Fungal (although there may be a secondary fungal infection present) -- I have tried anti-fungal medications twice for several-month-long treatments and there was absolutely no noticeable variation.
2) It's Not Viral -- It DOES respond to most antibiotics. It responds very quickly and thoroughly.
3) It Seems to be A Symptom of Another Disorder -- I had scrapings analyzed by microscope by a dermatologist. He did not notice anything abnormal in the tissue.
The dermatologist prescribed me anti-fungal medicines as a "shotgun approach." The condition was nearly gone in two days. On the third day I went to a dentist for a teeth cleaning and talked about the situation with her while I was there. She told me I should stop taking the antibiotics because they promote fungal growth. Stupidly, I followed her advice and stopped. The condition was back completely within a couple days. Afterward, I didn't have enough antibiotic left to complete the eradication.
Over the years I've been prescribed antibiotics numerous times for coughs and the like. Each time, the lines clear up quickly and stay gone for 3-6 months. Twice, after strong antibiotic prescriptions, they went away for about a year.
I am not imagining the effect of antibiotics. The lines retreat to nearly nothing within a day. The rawness at the base heals within a day or two later. And my tongue looks ready to be on a lollypop billboard within 4-5 days after I begin the course. I have seen that happen so many times over the past decade that it would be statistically unimaginable for the effect to be coincidental.
Whenever I visit a doctor and describe the situation, they get very condescending in their attitude (as if they don't want to be told about something they aren't aware of by a lay person) and prescribe me like three days worth of low-strength antibiotic to placate me. This manages to lessen the white lines while I'm on the meds to "almost gone" and then they return as soon as I finish the course of antibiotics.
Otherwise, I am an extremely healthy person -- a competitive cyclist. My only other medical condition is hypotension (LOW blood pressure) and even that is not severe. I do not smoke. I very rarely drink alcohol. I have tried cutting out every possible thing from my diet (caffein, dairy, gluten etc.) I have also cut out toothpaste, tried baking soda, tried new toothbrushes everyday for two months, mouthwash/no mouthwash. None of that has had any noticeable, lasting effect. I am HIV negative (that was the first thing I checked after getting these lines) and since the condition is quite regular/symmetrical, I don't think it's hairy leukoplakia. Most of the pictures I've seen of hairy leukoplakia are quite irregular and invasive. My condition rarely creeps very high up the sides of my tongue.
My theory is that I have some sort of bacterial infection that gets beat back into remission each time I do a strong antibiotic treatment but never gets wiped out completely. I suspect that whatever infection I have acts like syphilis in that it goes dormant or with few symptoms for extended periods of time. I would really like to try a thorough, injection-based, course of strong antibiotics like benzathine penicillin G followed by ten days of procaine penicillin and probenecid orally (your basic syphilis treatment) but can't find a doctor willing to listen to me describe my history with the condition and treat me like an adult capable of making valid scientific observations instead of just writing me off as "hypochondriac."
I would appreciate anyone on here who could give me suggestions as to conditions which might suggest the above symptoms, or advice as to how to communicate with a doctor to make him or her willing to work with me to knock this out.
Based on information provided, the clinical differential diagnoses iiclude, white sponge nevus, hereditary benign intraepithelial dyskeratosis, and idiopathic leukoplakia. Biopsy of lesions can generally establish a final diagnosis.
Quote" White sponge nevus does not entail any symptoms, and no treatment is therefore required. Systemic antibiotics have been used in an attempt to resolve the disorder, but with non-consistent result.194 When a positive effect is obtained,the recurrence rate is considerable. White sponge nevus is a totally benign condition." Page105,Burket's oral medicine, 11th edidition, bc decker
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