Topics

Symbioflor® - recommendable or not?
Hello, for years I have problems with digestion after antibiotic therapies. A bacterial mis-colonization has been diagnosed several times, after the intake of Xifaxan® (substance rifaximin) the complaints were always much better. Unfortunately, I get the prescription for this only, if I have run through the complete diagnostic again (including three different breathing tests). As I would have to be away from work at least for three days for this, this is not an option for me and I life with constant stomach pain. Now I think of trying Symbioflor® or a similar product. Does this microbiological therapy pose any risks in case of CF and if not, do you think this will be successful?
25.03.2013
modifier genes
Definition? Could these genes have a negative or positive influence on the diagnosed mutations 1) homozygotes 2 ) heterozygotes? Thanks, M. H.
15.03.2013
Ataluren and ABPA
Hello, Firstly, I would like to know where is the third phase of the drug ataluren, and secondly whether this drug is effective against ABPA in CF patients, or only effective on congestion?
15.03.2013
phage therapy
Hello. I learned today about the existence of phage therapy. What about the study of this technique on anti-infective treatment (Pseudomonas) in CF? Is it a line of research to be taken seriously? Is it already proven or is it to forget? I’m a CF patient and nobody never talked to me about this technique. Is it true that some patients go in Eastern Europe (where this therapy is used frequently) to be treated with phage? Thank you for your reply and for all the work you do. Best regards.
15.03.2013
Handwashing
Hello, My baby has cystic fibrosis and I'm wondering until what age we have to wash hands before touching and take care of her? Otherwise, we used to wash our hands regularly but the people we meet don't do it necessarily and sometimes they touch the hands of our daughter or her face without having washed their hands just before ... Is this serious? Should we force them to wash their hands before touching? Thank you.
15.03.2013
Equipment
We live in Canada and we will spend a holiday in Nice [France], and we need to rent a nebulizer and a compression machine (this is the name given in Canada). Do you know where and how we can rent this equipment?
15.03.2013
antibiotics
Hello, At the request of our CF-center, our 4 year old daughter is constantly on antibiotics all winter (alternating 15 days josamycin (macrolide) / cefpodoxim (cephalosporine) October to April), regardless of her state of health, particularly when "okay." We have no doubt of the benefit of this procedure but we would like to understand a little better why antibiotics are used "preventive" in the context of cystic fibrosis. Have studies have reported a concrete benefit for the field of infections? Also, what are the consequences of taking antibiotics over several months for the body of our daughter and future resistance to bacteria? For example, we had to stop taking amoxicillin plus clavulanic acid, that she tolerated well taken occasionally before, because after a few weeks, severe gastrointestinal symptoms appeared (one treatment is the intake of saccharomyces cerevisiae which is also associated daily). Thank you in advance for your response and we congratulate you for all the information available on the site.
14.03.2013
Common ivy
Hello, I have read that «common ivy» is beneficial for the treatment of bronchial inflammation, chronic bronchitis and that it favours the elimination of mucus. Can you tell me if research has been done concerning the efficacy of «common ivy» in cystic fibrosis ? Thank you in advance for your answer.
14.03.2013
Abdominal pain
Hello, My 6-year-old daughter with cystic fibrosis, complains of very strong abdominal pain. Nothing to x-ray, nothing in the stools and pancreatic enzyme dose has been changed several times .. How con one relieve it??? Thank you because we don’t know what to do.
14.03.2013
Cervical mucus impenetrable???
Hello, Some time ago I wrote that I have been trying to become pregnant for 4,5 years (I am 23 years old, 50kg, 1.60m, lung function 70-78%). When I was a baby I had an abdominal surgery done (intestinal occlusion) which caused concretions; these were removed about one year ago. However, it became obvious that the concretions were not the reason why I have not become pregnant for 4,5 years. Everything is functioning 100% and both tubes are permeable and nevertheless I do not become pregnant. Is it possible that the cervical mucus is so impenetrable that one cannot become pregnant for 4,5 years? Would medication or insemination be of help? [The rest of the question was only relevant for the German platform where the question was originally asked]
14.03.2013
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