Dear expert team, I am 42-year-old CF patient (F 508 / 2789+5G-A), however in very good general condition (FEV1 5.63 L. 98 kg body weight (athletic)). Besides 2 times daily inhalation with sole NaCl solution I do not any further therapies. Once a year, I have a control at the CF-center. ...
Dear expert team, I am 47 years old, CF, and contracted E. coli in the lungs. A first i.v. treatment approach with Cefotaxime reduced the germ count but that was it. Now I am supposed to inhale Colistin, E. coli is sensitive. I also take Amoxiclav against staphylococcus aureus that I have ...
Rare germ Inquilinus limosus
Dear expert team, My son 11 year-old son, suffering from CF, has been diagnosed to bear the germ Inquilinus limosus. (Apart from that he is from time to time colonized with Staphylococci, Candida or Aspergillus). As this germ seems to be very seldom, some statements contradict, therefore I ask ...
Always pseudomonas after visiting swimming pool – does colistin help prophylactically?
Hello, Our daughter (12 years, CF) was three times in an open air pool in her life and each time she had pseudomonas afterwards. It was always possible to eradicate it and she never had pseudomonas again. As a matter of course she would like to go to the swimming pool but until now we have ...
Hello, I would like to ask you how many types of Colistin do exist? Can we mix 1ml powder I.U. with 10 ml saline solution for nebulization? Can one use 5 ml twice daily on a 6-year-old girl for sinusitis? Thank you.
MRGN (multi-resistant gram-negative rod-shaped bacteria)
Dear ladies and gentlemen, after 3 years, there has been a renewed finding of Pseudomonas in my son (23 years old). 10.000 - 100.000 Pseudomonas (mucoid stem) with the warning, it was a 4MRGN-stem (multi-resistant gram-negative rod-shaped bacteria against 4 main antibiotic groups). Sensibility ...
I have been treated for several weeks with inhalative vancomycin due to a sudden finding of MRSA germs in the sputum, additionally with oral dosages of rifampicin and cotrimoxazole. At the moment, the germ is not detectable anymore, instead masses of Aspergillus have been found. I have realized ...
Training to perform intravenous antibiotic treatment - traning for care for relatives
My husband has CF. It's more and more difficult to find nurses who agree to stay at home during the time intravenous antibiotics are given. I would like to receive training and be allowed to prepare and perform the intravenous antibiotics. Could you tell me if this kind of training exists and if ...
G542X /5t and PA
My 7 year old son was diagnosed with carrying g542x and 5t. This diagnosis was made when he was 6 years old after experiencing syringeal akrokeratoderma in his hands (exessive wrinkling of the palms). He has a sweat test of 39 and then 40. The wrinkling of the hands only lasted for about 3 ...
Achromobacter xylosoxidans
Dear expert team, are there any new insights on this germ or on the treatment possibilities or is it still Cayston® (aztreonam) that is used in the treatment of this germ? Why is however then this germ not mentioned in the description of the drug, but only Pseudmonas? At what time would you ...
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