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Pat, I am going to ask a question which I am sure is stupid, but here goes. . .If everyone has c difficile in their gut at all times, how is a c difficile stool test ever negative? It would seem to me that all tests would come back positive, but of course, I know that is wrong!

 

My daughter has been doing well. I am concerned about an increase in symptoms if she gets ill with anything (in the past, any illness seems to cause us some problems, not just strep). But, the relatives of this woman were quite concerned (they were all being tested, I think) and honestly, the gloves and gowns made my daughter concerned (especially since she was told not to go in as her visit was optional).

 

The last couple of days her stomach has been acting up a little, but I am not sure why. It could, I guess, be c diff, or it could be the fact that she is really worried about the c diff, or it could be the Culturelle I started her on (she hadn't been taking it until about four days ago, and she started feeling not-so-fabulous yesterday). I left her on her "regular" probiotic, and stopped the Culturelle to see if that makes a difference.

 

Thanks to everyone who is trying to help me with this. Michele, that sound awful, and must make his life miserable too! Your sweet son so deserves better!!! I wanted you to know that with the Pen VK, my daughter had no issues. It is a more narrow spectrum -- again, don't exactly know what that means, but perhaps that makes a difference? My doctor has been advocating going off the antibiotic, but I haven't agreed to that yet. I may need to seek out a specialist (we consulted an infectious disease guy, and honestly, I was kind of surprised at how little in-depth info he seemed to know).

 

 

Emma,

From what I understand, the small amount of Cdif that everyone has in their gut is generally not enough to show positive in a stool sample. However, when you are on long-term antibiotics it wipes out a lot of the good with the bad and when there are empty spaces, the cdif seems to be the one that really takes over (along with yeast). The reason that c-dif is so dangerous in the hospital setting is that there are many patients who are immune suppressed and they are almost sure to be infected by c-dif positive patients if staff is not careful in gowning & gloving. On our floor we usually don't make the visitors gown & glove unless they are planning to go into common areas that other patients will use (like the galley, patient/visitor lounge, etc). In that case they will need to gown & glove in the room and make sure to discard those items in the room before they leave the room to use those common areas. If your daughter is concerned, it's pretty simple to do a stool collection for c-diff, but I wouldn't bother until she had consistent diarrhea for several days. Again, if her white count is normal, she probably wouldn't be that susceptible. Pat

 

 

Emma,

I've looked into this a little further and I think I have a better understanding now in order to explain it better. The C-dif that we all have in the gut is generally inactive and is kept that way by the presence of the good bacteria. When we take antibiotics and wipe out that protection, the c-dif becomes active and infective. The toxins that it creates cause the colitis and there are some strains that have become resistant to antibiotics (which is what makes it so dangerous). Most people who are not patients in the hospital would not be susceptible to catching it from someone else, unless they are on antibiotics and lack enough beneficial gut bacteria of their own. Then it is possible to become infected because they may not have enough good bacteria to protect them from the c-dif becoming active in their gut. Pat

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yes 500 mg Azith twice a week, and zyrtec and it was her first major flair up since the coticosteroid burst 10 years before. Minor flair ups during menses and illness but this one had to have a serious antibiotic Lezaquin to calm it down. She is more good then not and at the height of her illness was told by neurologist she looked like Tourettes and Aspergers spectrum. She recently went to NIMH for an adult neuro Dr. to look at her PANDAS and to talk about birth control but I don't think she had a lot of luck getting help. Hopefully she will post here soon. She is home for the summer from college.

Michele,

was Alyssa on the Azith. when she got the sinus infection?

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First, thank you all of the information on the c difficiile. It really helped a lot !! She was so freaked out by the gloves and gowns, that I really freaked out too!! Thanks for answering my silly question Pat. Kim, thanks for the reference. Michele, the story about Alyssa is so sad! My worst fear is that she will go off to college and get symptoms again (though we are just starting to think about college). I know when we went into the doctor the last time, the doctor was talking about vaccines again (the ones she'll need before college), and that got me really nervous. I don't want to borrow trouble, but these things do worry me a lot! I am going to try and switch doctors soon (her ped usually sees the kids off to college and is then finished with them, but I need someone who understands the situation so if there is trouble at college we have someone to turn to). But, of course, that is hard too -- I need to find someone that will keep prescribing the antibiotics (and, unfortunately, some won't -- especially since now she is exhibiting no symptoms, and she doesn't want to talk about it -- so trying to get her to personally explain to a new doctor what was happening -- well, that just isn't going to happen). Though -- EAMom -- I now totally realize that I do need to keep her on the antibiotics. Thanks again to all of you!

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