bigapplekathleen
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About Me
Non-Celiac Gluten Intolerance, Allergies to Wheat, Rye and 50+ other foods, Lymphocitic colitis, Chronic Apthuous Stomatitis, Epstein-Barr Virus, Ovarian Cysts, Fibrocystic Breast Lumps, Thyroid Nodules, inability to produce Cortisol, low vitamin levels
Despite this, I function at a very high level most of the time, but when I get sick, I get really sick. Not fun. Wish they had more answers for auto immune diseases.
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I just wanted to let you all know that they have FINALLY figured it out. (I posted something on another message with complete explanation if you want to look it up.) My new gastro did biopsies 3 weeks ago that showed Lymphocitic Colitis, which certainly explains A LOT. I am better already on 18 days of 9mg/dayEntocort and 6 caplets a day of Pepto Bismol...
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I don't even have gluten foods in my house. IN fact, they have never been in my house, since I just bought it 2 years ago and it was new. I live alone. My friends don't bring gluten here. I do not eat out at all anymore. I eat no processed foods - just meat, fish and veggies (and a little fruit). That's it. My toothpaste is tom's of maine - which is...
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Ok...complete frustration here... After taking prednisone for FOUR WEEKS, the sores all came back within 48 hours of stopping the meds. I am so angry! My mouth hurts so much. The blood tests were negative for coxscakie and my new infectious disease doc ran all kinds of blood work to check for vitamin deficiencies. There are NONE. So, we have no...
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Actually, you're wrong on the origin of the sores. These are NOT herpes and are not spread sexually. They are purely VIRAL. I have gone over and over this with the specialists. They have been cultured, etc. It is definitely NOT that. K
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So...another question for those of you that have had severe outbreaks like this before... I am now at Day 32 after the sores started, and they are virtually gone. There are still a few in there, and a few pop up each day, but go away fast, since I am still on prednisone. So, now that the mouth is healing, I am noticing that my tongue and inside of my...
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Welll...here's the update... The sores went away with the high-dose prednisone that I took for 7 days, but within 48 hours of the last dose, they came back like crazy and I am in so much pain again with sores everywhere. I went back to the docs again and now they think it's NOT coxsackie virus, but just an outbreak of unknown origin. (Again, common in celiac...
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I am completely recovered now (a week later!). The prednisone was a life-saver for me this week. I was back to normal in just 24-48 hours, and the sores were gone in about 4-5 days. I will follow up with an infectious disease person in 2 weeks, since we don't have the blood work back yet, anyway. (Coxsackie titer takes 2 weeks.) Thanks for all the suggestions...
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Wow. That explains it. I am a private instructor (kids age 4- adult) and a university professor. BUT this appeared before I started teaching this semester, so I picked it up somewhere else! Who knows!?
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Wow...you had coxscakie as an adult? I didn't have a cold at all; no mucous either. I am planning to have my tonsils out really soon, since they are so bad. I can't believe I am even considering that at age 39, but they have little holes all over them and tend to breed infection, no matter how clean I keep them. Plus their size impedes my singing. So...
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He is voted one of the best doctors in the Ny Metro area every year... Board certified in allergy and immunology...tough to go after that in any way...
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He did NOT apologize.
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YOu guys won't believe this...but that allergist actually just called me. I cannot believe it. I told him what the other docs found and how surprised they were about what HE had prescribed and the fact that he gave no steroids or prednisone. He wasn't even aware that someone could get coxsackie as an adult, and without hand or feet rash. And he's an immunologist...
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I just want to add that I called my allergist/immunologist today to tell him how off base he was in his diagnosis on Tuesday and how sick I got because he missed it. I asked him if it could be something contagious, and he kept saying no. He didn't do a culture, didn't do blood work, and wouldn't give me steroids or pain meds. It continued to worsen to the...
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I am not sure if percocet can be cut in half. I will ask the pharmacist. I feel almost no pain now, but I still cannot eat even mashed foods. It is way too painful, considering that my tongue is nearly doubled in size and the sores are still everywhere. I hope that the meds start to work some magic. I have never felt so awful.