Topics

Segniliparus rugosus infection of the lung
Is there any experience with the treatment of Segniliparus rugosus? Many thanks. Regards, B.K. [name shortened by ecorn CF]
17.07.2017
Potting plants
Dear expert team, My daughter has CF and is 4 years old. We want to pot plants in huge pots. I thought my daughter might help with that, however she shoud wear a mask. Is it really necessary? How high is the risk that she aquires problematic germs like fungi, Burkholderia cepacia.., when potting ...
17.07.2017
Lung transplantation / mycobacteria
My niece has CF, now the mycobacterium has been found ... according to the physicians she will get a lung transplantation...however the hospital is refusing to do it because of the mycobakterium. My question, which hospital would take a CF patient with mycobakteria and also do the ...
17.07.2017
Treatment recommendation for persistent Pseudomonas/Staphlococci infection
Dear team, I have received a lung transplantation (2010) and suffer from CF. For 6 months, my lung function decreases rapidly and since then, it is constantly low. Antibody tests, bronchoscopy, CT and x-ray had already been done. Only in the bronchoscopy, Pseudomonas and Staphylococci could be ...
19.05.2017
Round trip through California
Dear expert team, my daughter (19, CF), is chronically colonized with Achromobater and since February 2016 also with atypical Mycobacteria - Mycobacterium avium. This is at the moment treated under complicated circumstances (partly she doesn't tolerate the antibiotics). She will be finishing ...
13.04.2017
Haemophilus influenzae
My daughter, 1,5 years old suffers from CF and has now for the first time Haemophilus influenzae in the throat swab. Our treating CF physician regards it as a harmless germ, it is therefore not treated at the moment. I would like to have a second opinion. Of course, we do not want to give ...
17.03.2017
Discopathy at 14 years, Propionibacterium acnes, growth
Hello, Our 14-year-old teen with cystic fibrosis experienced severe back pain in May-June. He finally performed an MRI in August with this result: On the contrary, there exists in L4-L5 and L5-S1 a disc-shaped bulge with no disco-radicular conflict or a repercussion on the foramens. The bulge ...
24.02.2017
F508/5T
Hello, is it possible to have these 2 genes and have a staphylococcus aureus in a throat sampling for bronchiolitis? Because the 5T gene is a mild gene and I have never heard of Staphylococcus aureus for a patient with this combination of genes. Cordially
24.02.2017
Onion
Hello, I heard that onions could be harmful for the CF patients because they might contain the B. cepacia bacteria. Can we still eat it? Even raw? Thank you for your answers.
14.02.2017
S. aureus small colony variants
We just received the sputum culture of our 7yr old daughter, which showed the presence of S. aureus and S. aureus small colony variants. What is the meaning of small colony variants? Should we treat these colonies? Is it a classical evolution of S. aureus?
02.01.2017
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