Monday, August 24, 2015

aspergillus

http://forum.cysticfibrosis.com/threads/14453-nebulized-amphotericin-(fungizone)-for-fungus/page4?highlight=candida
I took IV Amphotericin for two weeks. I became extremely sick with nausea, vomiting, and developed renal failure. I was told I have long-term kidney damage from Amphotericin. But I have not had my kidney function checked over the last few weeks to see if there has been an improvement. My CF doctor and I have discussed using inhaled Amphotericin B.I culture Aspergillus and have coughed up black fungal balls over the last year. In late 2009 I began running a chronic low grade fever and developed hemoptysis in January 2011 which continues to cause problems. Another CF doctor at my center said he does not believe inhaled Amphotericin is a good idea because it can punch holes in the airways and lead to worsening lung problems. Anyone out there use inhaled amphotericin? If so, how long did you use the neb, what was the dose, and how many times per day? Did you/your child experience worsening lung decline after treatment?My fevers are alleviated with Zosyn and Augmentin. These two antibiotics may treat Ralstonia, a rare bacteriaI culture, as well as anaerobes. - See more at: http://forum.cysticfibrosis.com/threads/14453-nebulized-amphotericin-(fungizone)-for-fungus/page4?highlight=candida#sthash.X46lglGk.dpuf

http://www.hindawi.com/journals/ijpedi/2010/376287/

Ambisome http://www.jpgmonline.com/article.asp?issn=0022-3859;year=2014;volume=60;issue=1;spage=41;epage=45;aulast=Sehgal

Multi-Country Estimate of Different Manifestations of Aspergillosis in Cystic Fibrosis:

http://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0098502

Intravenous antibiotics reduce the presence of Aspergillus in adult cystic fibrosis sputum.

http://www.ncbi.nlm.nih.gov/pubmed/23513028

cf, treatments, etc

http://umm.edu/health/medical/altmed/condition/cystic-fibrosis

https://www.youtube.com/watch?v=0fkIVsWJPGE

http://www.cftr.info/about-cf/clinical-management-of-cf/respiratory-system/

Inspiration

“CF does not define you. You define CF and at the end of the day, it comes down to you being the one who chooses whether you’re going to let it control you or if you’re going to control it. Even on your roughest of days, wake up, choose the latter, and know that you have the strength to power through whatever is thrown your way because the fight for life is worth it.”
http://cysticfibrosisnewstoday.com/2015/03/31/crystal-climbs-for-cf-hiking-against-the-odds/

https://www.youtube.com/watch?v=alvWLTklz5w

CF related diabetes

http://www.cfww.org/pub/english/cfwnl/12/669/Dietary_treatment_of_adult_patients_with_Cystic_Fibrosis_Related_Diabetes

pecific Recommendations for CFRD patients with a BMI below 18.5.

Priority in this group to improve survival is weight gain through an energy-rich diet of 120 -150% RDA (3). The intake of carbohydrates should not be restricted to avoid deficits in energy intake. However, to stabilize blood glucose values, counting the amount of carbohydrates is recommended, and insulin should be adjusted to that amount (5). The intake of dietary fiber is not emphasized in this group to avoid that high fiber foods compromise energy intake. Increased serum cholesterol and triglycerides are not common in CF-patients (10) so no restrictions in dietary saturated fat will be necessary in most patients. Even in patients with disturbed blood lipid levels no restriction on saturated fat is recommended because cardiovascular disease rarely occurs in adults with CFRD (5, 9, 11).

Garlic and CF

http://www.cfww.org/pub/english/cfwnl/13/285/What_do_cyanide_garlic_and_marine_algae_have_to_do_with_CF_treatment

Nutrition - CF adults

http://www.rbht.nhs.uk/healthprofessionals/clinical-departments/cystic-fibrosis/clinical-guidelines/nutritional-and-gastrointestinal-care/achieving-the-nutritional-needs-of-adult-cystic-fibrosis-patients/

Gluthatione

The secretion of a peptide called glutathione by lung cells is impaired in cystic fibrosis, and there is good evidence to suggest that the lack of glutathione in lung fluid plays a key role in the chronic inflammation and infection that occurs. Previous studies have investigated inhaled glutathione as a treatment for cystic fibrosis. The current study is different from the others in that it compared active treatment with inactive placebo treatment, and involved a higher daily dose of glutathione over a longer period. In the study, 19 patients with cystic fibrosis were randomized to receive inhaled glutathione or placebo for 8 weeks. Glutathione-treated patients experienced an increase in peak expiratory airflow whereas the comparison group experienced a drop. When asked to rate their condition on a 5-point scale, the participants given glutathione reported significantly more improvement than those given the placebo. Also, inhaled glutathione therapy was well tolerated, and the frequency and nature of side effects was similar in the two groups. Chest, 2005.
Children taking Vertex Pharmaceuticals Inc's Kalydeco pill may be at risk of getting cataracts.

source: http://www.raysahelian.com/cysticfibrosis.html

vest, flutter, PEP?

Flutter was not as effective in maintaining pulmonary function in this group of patients with CF compared with PEP and was more costly because of the increased number of hospitalizations and antibiotic use.

http://www.ncbi.nlm.nih.gov/pubmed/11391327?dopt=AbstractPlus

The results of this study favour PEP and do not support the use of HFCWO as the primary form of AC in patients with CF.
http://www.ncbi.nlm.nih.gov/pubmed/23407019?dopt=AbstractPlus

Saturday, August 8, 2015

quinsair

http://tervis.postimees.ee/3286811/muugile-saabub-hulk-uute-toimeainetega-ravimeid

http://cysticfibrosisnewstoday.com/2014/12/29/cystic-fibrosis-drug-quinsair-pseudomonas-aeruginosa-treatment-given-positive-opinion-chmp/

http://cysticfibrosisnewstoday.com/2015/08/24/raptor-pharmaceutical-corp-acquires-global-rights-to-inhaled-levofloxacin-quinsair-by-tripex/