all4family Posted March 22, 2009 Author Report Share Posted March 22, 2009 Hi EM,The reason I was first prescribed the antibiotic is because I have a aortic valve insuficency. But the last dentist I talked to asked if I had any artificial valves, and I said no, so he didn't seem to think it was a big deal. But then I have read on the internet, and was really scared when a guy said his mother had an infected tooth, and they pulled it, and in a week she was dead from an infection in her brain! So I don't know which risk is bigger for me the antibiotic, or the infection. I eat a lot of raw garlic to try and keep the infection down. But I am nervous. I also read the side effects of all the antibiotics, and I don't want to try anything more then penicilan, and that is the only drug that a doctor actually said I was allergic to! Thank you for sharing the story of your daughter. It does give me some comfort. Oh, and I tried learning all I could about the genotype I am missing, and I was sooooo confused. But I did find this article that was of great interest to me, beause it says that one guy experienced orthostatic intolerance after taking a drug. Now I continued taking medications after they were making me sick, because they were being pushed on me, and I didn't know if they were right, and I was just scared of taking them or not. Makes me think that maybe after a whole year of taking these drugs that it at least contributed to this! In case you are interested here it is. And thanks for the support on the dentist issue. I am sooo nervous! http://bioethics.stanford.edu/education/do...SamplePaper.pdf Quote Link to comment Share on other sites More sharing options...
all4family Posted March 22, 2009 Author Report Share Posted March 22, 2009 THANK YOU THANK YOU THANK YOU Susan!!!!! I'm dancing with you!!!!! Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 23, 2009 Report Share Posted March 23, 2009 I feel like we collectively should send him a Thank you note !!!!!! This is big. Yeah You....As far as mastcytosis its annoying but for me treatable. Did I say annoying.....Thanks for sharing your "most excellent" news.!!! MHi Miriam-Do you have mastocytosis?JUlie Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 23, 2009 Report Share Posted March 23, 2009 Hi Suzy,I tried to do research on that other test that your doctor indicated was abnormal- the 11 beta prost F2- very confusing!!! The nearest I could find indicates that it's related to prostaglandin D2. This is commonly elevated in folks with mast cell activation disorder. The fact that your methylhistamines were not elevated does NOT exclude MCAD. Methylhistamines are only elevated for a few hours after an attack of anaphylaxis. In addition to your other DX, it is also quite likely that you have a mast cell disorder. Unfortunately, treatment for that involves taking meds that you can't metabolize..... Regular doses of aspirin are givem to counteract the prostaglandin D2. Figuring out an effective treatment plan is going to be tricky. For now, you are doing the best thing by avoiding meds you know have bothered you in the past. I can recommend a GREAT MCAD doc at Brigham and Women's in Boston, but I know that's a lot of traveling for you. What does your current allergist recommend? All of the best-Julie Quote Link to comment Share on other sites More sharing options...
mjan Posted March 23, 2009 Report Share Posted March 23, 2009 So.. Suze...should WE all go with you to see alll those mean MDs at the ERs you went to who overmedicated you..and did not believe YOU and now have them EAT CROW????? heeheheee.. Quote Link to comment Share on other sites More sharing options...
all4family Posted March 23, 2009 Author Report Share Posted March 23, 2009 Hi Julie,Thanks a million for looking into this! I keep looking things up on it, but was more confused after I read stuff then before! I even found something on Simian Immune diffeciency virus! whatever that is! So this could be an indication that I have the MCAD? That would be such a relief...not that I want that either, but at least that takes away the question of cancer...(or does it?) And it would also make sense, because I had the rash when I was at the doctors office, and it was a few hours after that that I started to collect my urine. Would you recomend I don't take an antibiotic for the dental appointment?? I know you are not a doctor, and can't TELL me what to do, but I take all recomendations. If you don't mind recomending the MCAD doc I would love to at least call there office. Maybe they can recomend a doctor here, or if worse comes to worse my husband says he would travel that far to get me the help I need! The current allergist had no clue why one of the tests were up, and the other wasn't. So I don't know if he even knows about it. He just said he can't treat me because it doesn't match with any known disease. So he is retesting me in May. But I sure would like to have some answers before that. I can't say thank you enough for researching this for me. I am trying to learn about it, but it is confusing! You are an Angel! thanks againhugsSuzy Quote Link to comment Share on other sites More sharing options...
all4family Posted March 23, 2009 Author Report Share Posted March 23, 2009 So.. Suze...should WE all go with you to see alll those mean MDs at the ERs you went to who overmedicated you..and did not believe YOU and now have them EAT CROW????? heeheheee.. YEEEEE HAWWWWWWW!!!!!!! LET'S GET US A POSSE GOING!!! WITH A WHOLE BUCKET OF CROW!!!!! Thanks a lot Jan!!!HugsSuzy Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted March 23, 2009 Report Share Posted March 23, 2009 Hi!Wow! Congratulations! I am glad that taking the chance to see him again paid off in your favor!!! I hope this leads to more answers in the near future, AND better treatment! Because it sounds like the previous was about the worst that they could prescribe!That is awful that everything was just making you sicker! Jeez!!! Hope that this leads to appropriate treatment in the very near future!!! Quote Link to comment Share on other sites More sharing options...
all4family Posted March 23, 2009 Author Report Share Posted March 23, 2009 Hi AJW,Thank you! I can't tell you how happy I am I went back! It was the worst! I would take a medication, and have a weird reaction, and they would decide I couldn't take that particular medication, and give me another one that would be worse, or even worse I would have a "reaction" to a medication, and they would treat the "reaction" with another medication! Now I know why my urine was the color of coke! The only thing that gave me any improvement was getting off ALL the medicine. Which helped right up until I needed a medication again! HugsSuzy Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted March 23, 2009 Report Share Posted March 23, 2009 Yes Julie I do indeed have Mastocytosis. Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 24, 2009 Report Share Posted March 24, 2009 Yes Julie I do indeed have Mastocytosis.Just checking to see if I was misreading that! I've sent you a PM. Julie Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 24, 2009 Report Share Posted March 24, 2009 Oh Suzy, I can't even begin to recommend anything for you. With your inability to process meds......yikes!!! I feel incredibly sorry for you and your doctors. The masto specialist I see is Doctor Marianna Castells at Brigham and Women's in Boston. She is wonderful. Does your current doc still suspect MCAD or mastocytosis? Do you have symptoms of mast cell disease? It must be so hard to seperate that from your other issue. I wish I could be more helpful Julie Quote Link to comment Share on other sites More sharing options...
all4family Posted March 24, 2009 Author Report Share Posted March 24, 2009 Hi Julie,Thanks so much. I don't blame you...I don't know what to do either, and it's my body!!! I canceled my dental appointment (once again) until I can get this thing figured out. I have the issue of the antibiotic, and the issue of the novocain... I got real sick the last time I tried the dentist! So now I have this awful tooth in my mouth. Maybe it will just fall out!!! ha ha! Thank you for the name of the doctor. Maybe they can at least tell me what kind of a doctor I could look for. My current doctor said that he just doesn't know what to think. He said he wished he could be more helpful, and even said he asked lots of other doctors, and they didn't know either. He said he had never seen it before. I think he would be open for any kind of suggestions I could find for him, and would probably be relieved if I found some other information. (he really looked like a deer in headlights.) The only thing he said was he would like to retest me in May. I don't know all the symptoms of mast cell disease, but I get flushing, I have the skin blisters like I seen in the pictures for mastocytosis. I get rashes all the time, and don't know why. I have easy bruising, and dificulty breathing like asthma that isn't improved with the inhalers. That is the most that I know that is related to mast cell. I have so many symptoms it is hard for me to tell what they are from. Thanks for your help. HugsSuzy Quote Link to comment Share on other sites More sharing options...
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