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About cordy

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    Bronze Member

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    Suffolk, VA
  1. cordy


    So, just to let you know it has been 10 weeks since I've taken an antibiotic. GI doctor agreed with me about dropping the Xifaxin to 1/d and gave me samples for 2 treatments if necessary. I feel, relatively, normal. Hooray! Amanda, so sorry you have to take all those antibiotics. I hope the infection in your toe has cleared up. Miocean, wow, you have a lot going on. I hope you get good news on the lung transplant! You know, my primary care physician did what was called a hydrogen breath test and it was similar to yours, but tasted like sweet/sour lemonade. It was only to check for H Pylori, which I didn't have. I wonder what they found in you and if it is a different kind/name of breath test for intestinal cooties? I have no new news except there is a hard lump on my collar bone next to my throat which I am having checked out on the 8th; not going to stress over it, but do tend to keep feeling it to see if it has gone down or...AWAY! I hope all felt well enough to enjoy a very Happy Holidays today or any other holiday being experienced. Blessings to all and thank you, again! :emoticons-i-care:
  2. cordy


    Thanks to all for your information. I have gone to all the different sites suggested. I have just sent an email to my primary care physician asking about the hydrogen breath test. So, in trying to figure out my new normal I have tried different things like prune juice, more fruit and salads and a fiber supplement. I am going to avoid use of the antibiotic as long as possible. The GI doctor also said if insurance won't pay for the Xifaxan, I can use Tetracycline or Doxycycline, but they tend to cause more cases of C Diff; wonderful! We shall see and I will let you know how things are going; too soon to tell from last 'bout with Xifaxan. I did finish the 7 days, but went down to 1 tab/day instead of 2. Again, thanks to all who replied. I forgot how helpful and supportive this site is! Blessings to all with Sclero and any other nasty disease. Cordy
  3. So, I was admitted to the ER towards the end of Aug. I had an appointment with my primary care physician, but had been in so much pain since 4:30 that morning I couldn't be still for an exam. It was like IBS and had been having strange bowel habits and terrible cramping since April on and off. Anyway, at the ER they did a CT scan via IV infusion and found nothing. Nothing in the stool specimen either. Saw my GI doctor 3 days later and she is assuming it is the scleroderma esophagus getting worse and moving into the intestines. She put me on 550 mg of Xifaxin, 2 x per day and then says just to do it every 5-6 weeks forever. Well, insurance turned it down as it is around $1000/14 pills. I don't want to take it and don't see any difference when I do, other than explosive diarrhea. It just seems like they're shooting in the dark. It is FDA approved it in this country for Hepatic encephalopathy, but not for treating me...she mentioned E Coli in the intestines or some flora building up due to lack of peristalsis or a slowing of peristalsis. I was diagnosed over 10 years ago, so they're just assuming the scleroderma is getting worse. Oh, I was diagnosed with cREsT then, so I guess now it's considered limited, systemic diffuse? My hands are not affected, for which I am grateful, but I do have gastral antral vascular ectasia (GAVE) Got nasty when they said I had watermellon stomach! Anyway, has anyone ever been treated with this stuff? Second question...I don't heal from surgery as well as others; sometimes yes, other times, no. Is it safe to have a dental implant? I have been putting it off for 2 years! Thanks all or anyone! Cordy
  4. Hello, I just had a nurse friend tell me that she was told that ibuprofen should not be taken by anyone with an autoimmune disease. Does anyone out there know anything about this? My doctor has not said anything one way or the other and she diagnosed me with cREsT about 6 years ago. Just wondered...thanks. Happy Holidays to all and health and healing for 2010 and beyond!!!
  5. Has anyone had a diagnosis of ileocecal valve problems? Since I have issues with my esophagus, I'm wondering if this isn't just an extension of that...literally! I was diagnosed with cREsT about 5-6 years ago and do have severe GERD and watermelon stomach. Just wondered if this was more of the same? Thanks for any responses...
  6. Thank you, but I live in Virginia
  7. Thanks Nan. Did it do any good? Cordy Suffolk, VA
  8. Hi all, I've just changed to a new GI doctor and she would like to do an endoscopy (whoopee, another one!) She is thinking that she will try stretching the esophagus. I'm not sure I like that idea. Yes, I have dysmotility, but I don't see how stretching can help. Isn't it a lack of peristaltic activity causing the swallowing issues? I just want to make sure that the stretching won't do any damage. Thanks Cordy
  9. WOW!! You surely are being hit with a barrage of symptoms all at once. I'm so sorry this is happening to you. It must be very frightening to have so much going on in your body at once. I'm new here too, but wanted to welcome you and tell you that you have come to the right place! Support, concern, information and friendship are just a keyboard away! Blessings to you. Cordy
  10. cordy


    I'm wondering about the ana. Does it just keep going up and up and does that mean stuff is going on inside, like GI, lungs, heart, kidneys...? Sorry for posting so many questions, but thanks so much for your answers!!!
  11. Thank you for the responses to my yeast post. I see where folks recommend seeing an expert, but where is one to find an expert? Is there a listing of doctors somewhere that I can't find? I have had 4 different diagnoses over the years and one said, you need to go to Duke. This was after my 2 manometries. I'm glad a nurse practitioner finally diagnosed it. I had one diagnosis of primary raynauds, one diagnosis of UCTD, one of cREsT and one of I don't know what you have. They all pulled at the skin of my hands to say I didn't have sclero. What is wrong with these doctors that they don't keep themselves informed? Anyway, this is a great forum. I don't know why I waited so long to 'speak'. Thank you for all the kind feelings and responses...to all of us. Oh yes, will my ANA keep going up and does it tell them anything? Does it mean stuff is going on inside...organs, joints? Thanks again. Sorry for the 2 questions in one post.
  12. Hello This is my first post. I have been diagnosed with CREST for about 4 years now. I believe that's what I have even tho' one rheumatologist said it was UCTD since I didn't have enough of the symptoms of CREST. Well, I have cREsT that's 3 and it's enough. Anyway, I haven't posted as I didn't feel like I was sick enough or hurt enough. I'm here now. So, I was diagnosis with a yeast infection last week. It is sore. I'm on FemHrt so I didn't really think it was all that dry there...guess it is. I read that yeast infection is caused mostly from a weakened immune system. I came here to find out if this is just another aspect of the crest/autoimmune mess I have. So, my gyn gave me Diflucan a week ago; 1 pill. It's still sore, but not so itchy. What kind of home remedy would you recommend? Would yogurt do anything? Thanks to anyone who might reply. Cordy/Suffolk, VA.
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