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Food supplement Indeptra from USA
What do you think of this offer? The non-profit-CF research group Sharktank (https://sharktank.org) sells under www.planetarybiosciences.com the food supplement "Indeptra". Indeptra is a natural composition for CF containing polyphenoles and antioxidants. These polyphenoles have reduced demonstrably inflammation in the laboratory and in human beings and/or acitvated the CFTR function. 270 tablets (that are sufficient for one months when taking the recommended 3x 3 tablets daily) are sold in the USA for 49 Dollars. As it is not a drug, the insurance will not cover it. Due to the duty law it is recommendable to import Indeptra via a pharmacy in the USA. An effect can be expected probably only after several months of intake. Single patients report however short-dated increased cough or astonishing improvements ("I have never coughed as much since now, however not as if I was ill: here clots are coming out"). Due to a lack of financial support there are however no studies, that prove the efficacy of the mixture. The tablets contain curcumin, resveratrol (a polyphenole) and piperin (from black pepper), a combination, for that CF patients report positive effects. Further polyphenoles (naringin and quercetin, crataegus) should increase the CFTR activity and the frequency of the beat of the ciliae. Silmarin from the Marian thistle has anti-fibrotic effects and protects from inflammation. Further ingredients are anti-oxidants like epigallocatechingallat (EGCG) from green tea and 7 and alpha-liponacid. Finally amentoflavone and forskolin should increase the signal molecule cAMP in the cell and protect against damage, in order to improve the CFTR- activity. With eating Indian food, green tea and much vegetables and fruit one could take these substabces all isolatedly so that dangerous side effects cannot be expected. Natural Compounds as Therapeutic Agents in the Treatment of Cystic Fibrosis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4828912/ Evidence against resveratrol as a viable therapy for the rescue of defective ΔF508 CFTR https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4587346/ Thank you for your answer! Stephan Kruip for the magazin of the German patient organization muko.info
20.06.2017
Cleaning of the gut before endoscopy
Hello, I am lung-transplanted since 2010 and had a routine appointment for a gut endoscopy last november. The cleaning phase was unfortunately very difficult, as in spite of drinking of 3 litres endofalk-solution (macrogol) the day before, persisting hard pieces of stool could still be found on parts of the bowel wall. Therefore a final statement could not be made, therefore another attempt was done in December. This time the cleaning phase was intensified. I was told to stop eating two days before and started at 10 o'clock in the mornings with prepacol 70 ml; at 12 o'clock then the tablets that go along with it and at 16 o'clock 3 litres of moviprep solution. On the day of the endoscopy again at 6 o'clock 1 litre moviprep solution. The result was a bit better, however not yet satisfying. As at the end of April a new attempt should be done and I have since the endoscopy again and again flatulences (probably as an intolerance with longtime effect of the whole gut to endofalk, moviprep or prepacol) my question: Are there any other substances, with that the cleaning phase could be done better? And what can a transplanted patient take in order to support the gastrointestinal tract? Many thanks in advance! Best regards,
20.06.2017
Kalydeco and enzymes
Hello, my daughter gets Kalydeco for 16 months now. Now it came out more and more, that she gets constipation and stomach ache with the normal dosage of enzymes. We have markedly reduced the enzymes then. Unfortunately, this was not successful either. Then we did not give any enzymes at all anymore. Now the digestion is perfect. Now it is however like this, that she coughs for instance from time to time. Not much, but before, she did not cough at all. Now I am worrying a lot if Kalydeco cannot act without enzymes. Is this possible in your opinion? Best regards!
12.06.2017
Symptoms of baby
Dear team, By instance, a gallstone has been discovered in our 12 months-old son. The physician is sending us now for having a sweat test done. He has had a cold about 3 times, with cough. The symptoms disappeared however within one week without drugs. His nose is frequently congested. Otherwise we do not have any problems. He thrives normally and his digestion is functioning without problems resp. we are not aware of unnormalities. Can this be really a hint for CF? Many thanks for your answer
12.06.2017
Wish to have children
Hello, my partner is 21 years old and suffers from CF. Half a year ago he has been told, that he has a knot in the tube and therefore it would not be possible for him to have children the natural way. However, a knot can not be felt in the tubes anymore (before one could feel it always); can it be that the knot is resolving in the course of time? Or is it impossible that we could have children the natural way? (The sperm fluid is looking quite normal, not like only fluid) Many thanks for your answer and best regards, J.
12.06.2017
Loss of taste / smell
Dear team, I have lost my taste and smell for 10 months now. I am an adult with CF, have polypes, have been operated twice on those polypes and it should not be done another time; because in the MRI it was not looking that bad. You have already answered me in October 2016, and I did everything that you proposed. Twice daily inhalation with Pari Sinus, with saline solution, pulmicort and tobramycin. After 6 months of this therapy, my mucosa in the nose is totally irritated and I could scratch all the time. However, smell and taste are still gone. In the meantime I took oral cortisone for 3 weeks in spite of my difficulties with that - however this was successful for only two days and nothing else than sleeplessness and unrest occurred. Then it was closed again. I really do not know what else to do. Before, I had a social life, ate a lot with peolpe, the small nice things, that remain. I am really down with my mood, feel like being cut from life, as I am really a sensible human. (And also the pulmonal finding is already in your mind.) I have the impression, nobody can help me (ENT) resp. takes it really for serious (hospital). Do you have an idea? Thank you again.
12.06.2017
Orkambi and diabetes
Hello, my son takes Orkambi for a short time period. He has CF and diabetes, that is treated with Repaglinide (3 x 0.5mg). Among the drug interactions of Orkambi is is written, that is decreases the effect of Repaglinide. Is it therefore sensible to go on taking Repaglinide or are there any alternatives? Many thanks and best regards,
12.06.2017
Amount of daily drinking
Hello, I would like to know for my friend, who suffers from CF, how much water one has to drink daily in case of CF?
12.06.2017
Lung produces since recently extremely much mucus, why?
Dear expert team, my brother, my sister and me, we suffer from CF. Unfortunately the condition of my brother worsened extremely in the last 4 weeks. The reason is until now not really clear. He got 5 weeks ago ORKAMBI as a new drug. Unfortunately it seems that at the same time a pneumonia came up. This had seemingly the effect, that his lung produces extremely much mucus. This had been mixed with blood in the beginning, now it is brownish. He expectorates the mucus with inhalation and physiotherapy. Unfortunately the lung goes on in producing much mucus and our physicians of the center cannot explain this. Is there a reason known to you why such immense amounts of mucus are produced? Actually my brother is transferred to a center in order to get prepared for lung transplantation. Many thanks for your help!
12.06.2017
Compund heterozygous for F508del and R117h
Dear ladies and gentlemen, the above mentioned mutations have been found in my case, when I (32 years old) had already been pregnant via IVF (in-vitro fertilization). I did the investigation, as these mutations had also been found in my brother when he was investiagted in a clinic for reproduction as he wished to have children. These mutations are in trans. During my pregnancy, I visitied a CF center. All investigations were not pathological, a sweat test had not already been done. However, a colonization with Staph. aureus had been found. My question: Is this a combination of mutations in which sooner or later classical symptoms occur or is this rather an atypical form? Best regards,
12.06.2017
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