Topics

Human genetics
Hello, I, my husband and my daughter have been investigated for Del F 508 , Del I 507, Del TA 1677 , Del 21 kb. In my husband and my daughter (4 yrs) Del F508 have been found, nothing has been found in me. How does this influence the prognosis and further therapy? How necessary and sensible is it, that I and my daughter get investigated for further Del mutations? Many thanks!
28.01.2016
Acinetobacter
My daughter (15-years-old) is colonized with Staph. for at least 2 years. Now, 4 months ago, an infection with Acinetobacter baumanii (multiresistant MRGN 3) and lately an infection with Haemophilus influenzae occurred additionally. Her FEV1 value lost 35% in 3 months. Now Acinetobacter is not detectable in the sputum anymore. Would you in spite of this recommend an i.v. therapy, if yes for which period of time?
28.01.2016
Running dehorted
Hello, my son (25,CF) has been told from his CF center, running would not be the best sport for CF patients - as the pelvic diaphragm would be overloaded, as it would already be exposed to a high burden because of coughing. Otherwise on hears however about the success for the lung function of CF patiens, who started running and even do marathon? Many thanks for your answer!
25.01.2016
Another question on antibodies
[These question refers to the question "antibodies"] Dear Dr. Hügel! Referring to your answer on the question "antibodies" I have another question: if respective antibodies against Pseudomonas can be detected and however no Pseudomonas can be found with the usual investigation methods (throat swab, sputum, induced sputum) - would an anti-Pseudomonas therapy (e.g. an oral or inhalative treatment) be initiated in spite of this according to the guidelines? An the second question would be: can antibodies be investigated for any germ and probably can one conclude from the amount of the antibodies which germ plays the first role respecitvely causes the problems? In advance many thanks for your answer I.D.
25.01.2016
Child with immunosuppressive therapy in the same class
Hello, my daughter is 7-years-old and suffers from CF. At the moment she has a Pseudomonas. In her class, there is a child suffering from an autoimmune hepatitis and is under immunosuppressive therapy. I am worrying that the other child might probably acquire germs faster, that might be a risk for my daughther and of course the risk the other way round, that the Pseudomonas could be a risk for the other boy. Would it make sense to seperate the children, so that one goes to another class?? Furthermore I am worrying that the teachter underestimates the illness of CF and cannot handle it. Many thanks for your opinion.
25.01.2016
Complementary drugs for pseudomonas
Hi, my daughter is 7 years old and since the beginning of the year we are fighting against Pseudomonas. Actually we are for the second time for iv antibiotics in hospital. My question is, are there any additional options in complementary medicine? Is there any experience in treatment with Manuka honey, curcuma, cysticus…or what else helps?? Is there anything you can recommend in addition to drug therapy? Thank you for your comments.
25.01.2016
Colonization of chestnut trees with Pseudomonas
I have read an article in a German newspaper from 11/15 about trees. There it was mentioned, that chestnut trees are colonized with Pseudomonas in the area around Dresden (city in the east of Germany). Can CF patients get colonized and which kind of precaution measures should be taken?
20.01.2016
Sweat test in case of food intolerance and atopic dermatits
Hello, my daughter has had a sweat test last week. The result was at 32. Is that still in the normal range? I have to mention, that she has an atopic dermatitis and a food intolerance. Cow's milk (step 3), chicken egg (step 4) and peanuts (step 3).
19.01.2016
Water ionizer
Dear expert team, my husband likes to buy an electric water ionizer for our drinking water (s.www.aquion.de). According to the company, one gets than a healthy alkaline drinking water, that is free of all pollutants and rests of drugs, that is said to be especially suitable for CF patients due to the mentioned features. A possible contamination with germs is excluded if the filters are changed regularly. Is such a water suitable for our daughter (4 years, CF) or would you rather dehort from using such a device? Many thanks and best regards!
19.01.2016
Lynovex (Cysteamine)
Dear team, while surfing in the Internet, I came across the above mentioned candidate that is acutally in Phase IIb. I was not able to find anything about it on the German CF websites. The pharmaceutical newspaper [German newspaper] reported in January 2015: “The experimental antibacterial substance NM001 (Lynovex®) is effective against gram-positive and negative germs, that are associated with CF, like Pseudomonas aeruginosa or Burkholderia cepacia. It prohibits furthermore the formation of biofilms, that lead in CF patients to persistent and antibiotic-resistant infections of the lung. Additionally the small molecule NM001 had a mucolytic effect in vitro and ex vivo. Actually, the molecule is in phase IIa of clinical investigations (1,4).” Source: http://www.pharmazeutische-zeitung.de/index.php?id=55785 On the 38th European CF congress in the middle of the year, positive data was reported from phase IIa. Source: http://www.novabiotics.co.uk/blog/2015/06/positive-lynovex-phase-iia-data-presented-at-the-38th-european-cystic-fibrosis-symposium Question: Is this molecule a mucolytic substance or an antibiotic drug? Do you have further information about this drug candidate? Many thanks for your efforts and best regards,
14.01.2016
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