ecorn-cf: App. question list

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Lactose intolerance 2: Dear Dr. Posselt, I thank you very much for your extended answer. Now I can probably better understand why my test results have been negative. Of course I have to take many drugs against an organ-rejection. Also the intake of antibiotics, especially Ciprofloxacin, is frequent, in case an infection is up-coming. The intake of lactose-free milk products or in combination with lactase tablets with lactose-containing food does not cause any problems in contrast to the intake without lactase-tablets. I had the blood-test performed at the clinic for dermatology and allergology at the medical school of Hannover, Germany. The laboratory finding PCR says: "there is a heterozygous mutation in the regulatrory region of the lactase-gen, therefore a clinically relevant lactose intolerance is unlikely." I would be very pleased if you could explain this statement a bit to me. Best regards,; 21.09.2010

Lactose-Intolerance: Dear expert team, I suffer from CF, am 32 years old and have had a transplant of the lungs and liver nearly 3 years ago. I am doing very fine and I can follow my former full-time job again for 2 years now. However, I have an unpleasant problem. Since my transplant surgery I do not tolerate milk anymore (milk, yoghurt, white cheese). About 10-15 minutes after eating I have strong stomach pain, which does not occur from the fat content as I take enough Kreon. In former times I was able to consume such food in great amounts. The symptoms point at a lactose-intolerance and I have done a blood test and a breathing test. These have both been negative. Furthermore, I had an endoscopy of the stomach, small intestine and colon done, which turned all out to be without a pathologic finding. In case I eat lactose-free food or probably take lactase tablets, the problems do not occur. My question is, if the problems can occur due to the new liver, the immunosupressive drugs or due to the CF itself and therefore resulting lack of enzyme effectiveness (however though there are enough enzymes there) and what I should do now the best. Restarting eating the food again because there is no positive testing is for sure not a solution. Hope you have an answer, Yours sincerely,; 21.09.2010

exon 13 sequence variant D727Y: Hello, in my daughter, the mutation exon 13 D727Y has been diagnosed heterozygously and in intron 8 the 7T-allel homozygously. Does that have any consequences? There are mutations however, which are not known already and not detectable. Is this CF or not? I would very much like to know if she suffers from CF or not in order to initiate a therapy because this is very important in CF. Her clinical data: 3 positive sweat test conductivity measurements, underweight, constant airway-infections, gastro-intestinal infections, problems of digestion, extreme transpiration, curved nails, increased bile acids, thorax x-ray minimal suspicious, genetic testing negative, complete gene test exon 13 D727Y, bronchitis, several times scarlet fever, problems with the kidneys, 1.11 cm and 15.1 kg, age 6. She has been tested on: celiac disease, food intolerance, allergies, anorexia, dermatitis, dysfunction, dysplasias, dehydration, deprivation, cholestase-fucosidose,g luose 6 phosphat dehydrogenase, glykogenose typ1, hypogammaglobulinaemia, klinefelter syndrome, long-term-pge1 infusion, mauriac syndrome, mucopolysaccharidose type 1, protein deficiency nutrition, pseudohypoaldosteronism, short stature. diabetes, nephrose, adrenal gland insufficiency, hypothyreosis. All these investigations have been negative.; 16.09.2010

Enterobacter cloacae: Hello, I have a 19-month-old daughter with CF. Last week we noticed an infection with her, and a throat swab that was subsequently done at the CF clinic showed that she had enterobacter cloacae. The doctor at the clinic does not want to treat this germ any further. He says it has not been proven that this germ will cause any problems in CF patients, but one should keep in mind in later antibiotics therapies that she has (or had) this germ. Is it really true that one should not do anything against this germ? Will it not spread if it is not treated? Many thanks. Anna; 14.09.2010

Tap water: Hello, In one of the questions [please refer to “Calcium in connection with antibiotics”] the expert recommends taking certain antibiotics with tap water. This confused me a bit because I actually have avoided tap water up to now. Can I really drink tap water without hesitation? This way I would get in contact with non-boiled water and this would mean, in reverse, that I do not have to boil the water for the nasal wash (nasal douche) before using it either – I mean the oral mucosa and the nose are pretty close to each other, right? What is the official meaning?; 14.09.2010

Calcium in connection with antibiotics: Hello, some antibiotics (oral taking) should not be taken in connection with milk since their effect is reduced/altered by the calcium contained in the milk. This is what the package insert of the antibiotic usually says. My question now: the calcium content of milk is about 100-130 mg/l, our mineral water contains about 555mg/l. Is it therefore not advisable to switch to a mineral water with less Caclium content or does this have no influence on the effect of the antibiotics?; 14.09.2010

Problems in high temperatures: Hello, do CF patients suffer from heat more strongly than "normal" healthy people, and if so, are there any particular recommendations apart from those applicable to everyone (drinking a lot, no sports outside, etc.)? Perhaps increased inhalation or something similar? Many thanks.; 14.09.2010

Stenotrophomonas maltophilia: Hello, I have CF and am colonized massively with stenotrophomonas maltophilia. My lung function has not improved despite intensive therapy. They say that stenotrophomonas maltophilia is not dangerous, but everything else was ruled out as a reason for the poor lung function. How can stenotrophomonas maltophilia be treated? Thanks and kind regards.; 14.09.2010

Cystic Fibrosis and pancreas: I just found out that I a am carrier of the disease. I have a 9 months old baby and I would like to know if there are any symptoms from which I can see if my baby has the disease?; 14.09.2010

Liver disorders: I often hear about liver disorders in cystic fibrosis. What is this and how do they occur ?; 14.09.2010