Topics

Mycobacterium abscessus and impaired function of the liver
My 24-year old female patient has a colonization of the airways with M. abscessus for 9 months. There are hints for an infection of the lung with M. abscessus (decrease of FEV1, infiltrations, cultural and microscopical detection of the germ in the bronchial secretions and bronchoalveolar lavage). The bilirubin value is 2.6 mg/dl, GGT 72 U/l, GPT 107 U/l. Which therapeutical recommendations for the treatment of M. abscessus exist with which hepatic-tolerated drugs?
01.08.2011
Production of mucus
Dear CF-team, which factors influence an increased production of mucus (apart from Staphylococci and Pseudomonas and other germs)? I do not have any germs in my sputum, however despite this, a very high production of mucus in the lung (100ml daily). Would a special diet be an option (e.g. few milk)? Many greetings,
01.08.2011
Visit of the zoo (tropical landscape)
Dear ladies and gentlemen, I would like to visit the zoo with my son (CF) in the city of Leipzig, Germany. This zoo has as an attraction a tropical section with high humidity, which is, according to my view, generated via finely nebulized water. Which measure could I undertake in order to visit this section, so that my son has a risk as small as possible to get a germ? Or do you dehort in any case from the visit of this section of the zoo? Many thanks,
01.08.2011
Mild mutations
Hello, Are there mutations that make the disease milder than others? Thank you.
19.07.2011
Strong flatulences
Hello, I suffer again and again from a very distended stomach. After an odyssey about 2 years ago (inclusively Fructose-intolerance breathing test, endoscopy of the bowel, both with negative result) a lactose-intolerance has been diagnosed. In addition, a mis-colonization of the bowel, which should have been treated with rotating antibiotics. This had however to be abandonned due to an infection that required again another antibiotic drug. After adherence to a lacotse-free diet, the symptoms ameliorated markedly, reoccur since a few months now increasingly. I hardly dare to eat anything and I am at my psychological limits. Recently I read something about new knowledge, according to this the symptoms in case of CF could come also from a chronic-inflamed small bowel and should be treated accordingly. Can you tell me some sources about that? With the problem itself I do namely not really feel taken for serious in the CF center nor in a hospital for internal medicine, in contrast. The stomach was simply "a bit" distended, "Oh, there is indeed much air in it", but more than vague trials without results does not happen for months. I am slowly at the end of my nerves. Many thanks in advance.
19.07.2011
Urolithiasis: how to do to avoid it?
A great thank you, Dr Danner for your answer on urolithiasis. I forgot a question in my precedent message. What about precaution to prevent urolithiasis apparition (diet, way of life, medicine…). What are the recommendation you advise to delay/avoid lithiasis. Thank you.
14.07.2011
Discuss the disease with a child
Hello. Our CF daughter will be 2 ½ years. We wonder how to discuss the disease with her, especially the CF chronicity and the long-term treatments. Is there a “standard” or recommended approach? Should we be proactive or wait for her questions? Our daughter is particularly clever and able to understand complex concepts for her age. But precisely we would like to avoid going too far in our explanations. Indeed, she’s already very anxious and we know that the unvoiced remarks lead as many problems as "over-voiced" remarks. Of course, at present, in her mind, an illness is a cold, fever, etc ... Should we draw a parallel between these benign diseases and CF or, otherwise, immediately put CF on another level? For example, we are already trying to avoid saying that drugs cure but we say that they treat. We hope you could give us some answers based on your experience. We will try to discuss with the psychologist of our CF Centre but it’s far from our home so the conditions are not ideal. Thank you in advance, Best regards.
14.07.2011
tobi
hello I have CF and am 28 years of age over the last two years my FEV1 has declined from 68 to 48 % predicted because I worked in an environment with heavy smoking, this is irritating my lungs and I did 6 hours physiotherapy per day, I receive one course of iv antibiotics per year and sometimes I also take oral ciprofloxacine now after the iv course my FEV is 58 % predicted, but I have problems to organize my physiotherapy and my inhalations, now I have received a new treatment but my lungs are more inflammatory than infected, in my blood test I have a CRP of 15 and I have received inhaled fluticasone and TOBI, I have already taken it 3 times but I feel unwell taking it, I have the impression that 5 ml is too much and feel like drowning, on top of it I should do pulmozyme (DNAse), mucoclear (hypertonic saline) and ventolin (salbutamol), since I started the TOBI I feel nauseated, have headaches, my nose is running and my sputum is changing colour from green it turns to brownish, I do not think this is normal and want to take back my colomycin, what do you think ? Will the side effects go away or should I stop (this new treatment) ? should I return to taking colimycin 4 mls ? I don't know what to do excuse my errors/mispellings thank you
14.07.2011
hygiene of dish-washer
I just read in a french medical newspaper that dishwashers are contaminated (60%) by fungi with black pigment called Exophalia dermatitidis and E. phaeomuriformis. This species are very resistant to heat and detergents. These fungi would pose a problem in patients with cystic fibrosis. What should we think and how should we disinfect our dishwasher?
12.07.2011
Good news about the combination VX-770 & VX-809
Hello, I noticed news about the VX-770 and VX-809 combination for patient with F508del mutation (deltaF508). Unfortunately I am not very strong in English and the automatic translators are not always clear. Here are the sites where I could see the information: http://newsblaze.com/story/2011060904034600002.bw/topstory.html http://www.canada.com/health/Interim+Phase+Data+Showed+Combination+Improved+Function+Defective+Protein+that/4917737/story.html I understand that the news were good Could you enlighten us on this? Thank you A mother
12.07.2011
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