Topics

Getting pregnant with CF -2-
Hello, 1. I would like to know, since you keep hearing different things about this, whether it is true that women with CF show a decline in lung function which they cannot recover due to a pregnancy. 2. Which type of sports should one do during pregnancy and how often in order to keep the lungs in shape? Many thanks!
22.03.2012
Use of propolis instead of antibiotics with CF
Propolis is a resin-like mass with antibiotic, antiviral, and antimyotic effects produced by bees. The bees produce the substance in order to keep the beehive free of germs. There are two options to use this in diseases of the respiratory tracts: 1. The air from the beehives is sucked off and can be breathed in via an inhalation mask. This is only possible next to the beehive and with certain beekeepers. 2. A so-called Propolino is available for purchase, which is a jar in which you put a capsule containing propolis solution. This solution is heated and the substances that are released can be inhaled. The Propolino can be put up at night e.g. in the children’s room. This option is certainly not as effective as option no. 1. Now my question concerning this: Do you have any experience with this method? If not, can one try this method as a CF patient or are there any objections to it? Should one first try a propolis treatment (option no. 1) before switching to an i.v. antibiotics therapy? Can option no. 2 be done prophylactically to strengthen the immune system so that regular use could immediately kill potential germs and the colonization of the lungs with germs can be prevented or at least delayed as long as possible?
22.03.2012
PTC124 approval?
Dear expert team, as far as I know, the drug is currently in phase III, which is supposed to end by mid-2012. Can you predict roughly how long it will take until the drug is approved and how likely it is to get approved at all? In case it does not get approved, would it be possible to obtain the drug from another country such as the United States or Israel? I am sorry for asking so many questions, but the drug is really important to me. Many thanks in advance.
22.03.2012
Pseudomonas putida
Dear expert team, I have a question concerning a germ. I have a CF-like disease; allergic ABPA, by now somewhat profoundly deforming bronchitis with recurring shifting of secretion. One-time detection of M. intracellulare in 2005. Repeated detection of alicagenes xylosoxidans/sarratia. Antibiosis very rarely, since low CRP, but lung loss. Recent cultures: - Aspergillus fumigatus: not worth treating, since apparently the other parameters do not require it - Klebsiella pneumoniae: low germ count - Pseudomonas putida: high germ count - Candida albicans: low germ count I assume “pseudomonas” usually has a deterring effect on all patients, but this one would be harmless! Only I have so much pus all the time that I cannot keep up with the coughing. Furthermore, I have a germ in the bladder that only – and just for a short time – reacts to oral cyclosporines (constant germs despite surgery, microhematuria, incontinence; the urologist recommends two further surgeries!). On top of this, I have some troubles (72 years old) that do not make treatment easier: arterial hypertonia, coxarthrosis on the right side, necrosis of the femoral head (should not be treated for now due to the lungs), sleep disturbance, all of which are a huge burden. Is the germ I mentioned really not worth treating? I would like to know more about this. Thank you for your effort and kind regards.
22.03.2012
Travelling to Namibia and Cape Town with CF
Dear Expert team, I have CF and would like to travel to Namibia for three weeks in June/July (tour from Etosha National Park via Windhoek to the very south) and then fly to Cape Town for a few days. This would be an organized trip with a tour guide and accommodation in (at least) mid-range hotels. My lung function is stable at about 60% FEV1 and I have already taken several long-haul flights and long-distance trips without any problems. My CF doctor does not have any objections to the journey, but we have not yet talked about the details such as required vaccinations, etc. According to the public health department, all travellers are advised to get vaccinated against tetanus/diphtheria/polio, measles, pertussis and hepatitis A, as well as to take along stand-by medication against malaria (there is supposed to be a small risk of malaria at Etosha National Part at this time of year). Are there any further vaccination recommendations particularly for CF (and diabetes), or other risks to be considered/precautionary measures to be taken due to CF? Are there any objections against the possible intake of malaria drugs because of CF? I take the “usual” CF drugs (acithromycin, colistin, Viani® -- fluticason/salmeterol, … ) Many thanks and kind regards.
22.03.2012
R347P mutation
There was a mistake in my earlier question. My son’s mutation is Delta F 508 / R347P. We would appreciate it if you could provide some information on research findings concerning this. Thank you.
22.03.2012
Orthomol®
Hello, Friends recommended me "Orthomol immun®" for strenghtening the immune system. Is this product an alternative to vitamin products? Or can it be taken in addition to these? I know that it is pretty expensive but if it helps…
22.03.2012
very rare mutation
Hello I have been diagnosed with CF at 5 months old, with a very rare mutation: R569 homozygote. I would like to have more information on this mutation.
22.03.2012
Salt water pool
Dear expert team, In summer, we would like to rent a holiday home with salt water pool in Mallorca. Can our children (both CF, 4 and 6 years old, so far pseudomonas-free) use this pool without any danger as far as infection with pseudomonas is concerned?
22.03.2012
Douvent® and Mucoclear®
Hello, Could you please say to me if I can mix in the same nebulizer Mucoclear® and Duovent®. Thanks for your response. Best regards.
22.03.2012
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