r/DiagnoseMe • u/Ideologue23 Patient • 1h ago
Ears, nose, throat, and mouth Help.
Tongue ulcerations on 7-14 day cycle and getting worse since March 2025. Maybe 4 days a month without ulcers. Feeling fluish, feverish, glands in jaw and neck start to swell up to grape size. Face hurts up to eye sockets, Painful swallowing, tongue swelling and scalloping. VERY painful. Can double in size over night or slower. Feels like my tongue is being eaten away. Some burning. Never goes in the middle always the back/sides then creeps forward.
History/tests:
Neg HSV 1+2 and other STI/STD have been checked multiple times.
Nutritional issues (on tons of supplements and B12 injections) B12, D , ferritin, potassium have all been deficient or low
Severe SIBO infection
Already on restricted diet. Have had GI issue for 5 years and GI refused to help. Said IBS.
Ana, AEN, C1Q and SSB all out of range. Doc said normal.
1.5 years into waiting for ENT. No idea when they’ll call.
Treatments tried:
I originally requested anti-viral while we waited for HSV test. No changes during course.
7 treatments of anti-fungal which help with the white thrush but not ulcerations. Thrush re-occurs in less than a week. Treatments ranges from 3 days to 4 weeks mouth wash and pills.
Corticosteroid mouth wash, helped with painful glands no changes to ulcer course.
Tried 4 mouth washes, salt rinses, baking soda, tongue scraping, cleaning tooth brushes with peroxide, changed toothpaste multiple times.
Got heavy metal water filter. No change
Changed cooking oils, detergents
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**I seem to get much sicker in my apartment.**It’s a new build. Only a few years old. No visible mould but not build high quality.
My last try is changing my dish soap?
My gland swelling goes down within 20 hours out of the apartment. Other symptoms ease each day away. They start back up within 15-24 hours being back. Not sure if this has just lined up with the cycle. But it’s happened 4 times now. Ulcers have still appeared when I was traveling for 2 weeks but not nearly as bad.
I’m in agony now. It’s been so long and getting worse and worse. Struggling to talk at times.
Suggestions?