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. <br><br>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. <br><br>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. <br> - 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/

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

mycolitics..

http://www.rcjournal.com/contents/07.07/07.07.0859.pdf

http://www.cfmedicine.com/history/topics/MucolyticPulmo.htm

excercise benefits

http://respiratory-research.com/content/14/1/32

Herbal products and CF

http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/HerbalProducts/Herbal-Products-12-2010.pdf?hc_location=ufi

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, May 9, 2015

http://www.ucsf.edu/news/2015/02/123461/cystic-fibrosis-discovery-may-lead-new-treatment-strategy-help-patients-breathe

“We thought Pulmozyme would be more effective than NAC in liquefying the mucus, because CF sputum contains lots of DNA,” said Fahy. “But to our surprise, NAC worked much better.”

Friday, May 8, 2015

Aspergillus Bronchitis in Cystic Fibrosis

http://journal.publications.chestnet.org/article.aspx?articleid=1084530
-
The use of itraconazole oral solution formulation is preferred in patients with CF, as higher itraconazole blood concentrations are achieved than with the capsule formulation. The absorption of the solution is more rapid in the fasting state. Conway et al16demonstrated that the administration of oral itraconazole solution, 2.5 mg/kg bid, in patients with CF achieves steady-state concentrations in a maximum of 8 days. Herbrecht et al17 suggested that voriconazole should be the first drug for Aspergillosis

Saturday, April 11, 2015

N-acetylcystine

"Another problem with neutrophilic inflammation in CF is that although the NTs are called in to kill pathogens, they don't actually do a very good job because they are lacking in the antioxidant glutathione - the number one most important tool that NTs use to kill pathogens. It is thought that CF cells have a hard time secreting glutathione into intercellular space because of the faulty CFTR channel, so NTs have less access to this important antioxidant. Several studies have looked into reducing systemic inflammation by boosting NT glutathione levels with NAC supplementation. N-acetylcystine (NAC) is a molecule necessary for the synthesis of glutathione in the body, otherwise called a glutathione precursor. Direct supplementation with glutathione is largely ineffective because it is easily oxidized by environmental factors. For years NAC has been used to boost glutathione in the lungs of CF patients by inhaling it in a prescription called "Mucomyst". This was effective, but went out of fashion as pulmozyme came along, plus I've heard that mucomyst wasn't so popular because it had a rotten egg smell when aerosolized. Now there is more research suggesting that oral supplementation with NAC may also be effective in boosting NT glutathione in the body as a whole and in the lungs in particular, making our immune system more effective at clearing infection. In a preliminary study, oral NAC supplementationsignificantly boosted NT glutathione and blood glutathione in the whole body, significantly reduced the number of NTs in the airways, significantly reduced IL-8 (an inflammatory marker) in the airways, and significantly reduced NT elastase in the sputum [25]. This is a big deal! This means that instead of dealing with systemic inflammation through palliative treatments like steroids, high-dose ibuprofen, and azithromycin, NAC supplementation targets the root cause of the problem with a completely harmless treatment that has virtually no side-effects and no known level of toxicity! A larger clinical study has just been concluded on the effect of NAC on CF lungs, and I look forward to exploring the results when they're published. The standard dose for oral NAC is 600 mg three times a day, and you can ask your doctor for a prescription for it. It is used in modern medicine to treat tylenol poisoning and interstitial lung disease, so your doc should be able to get your insurance company to cover it no problem. If not, you can also get it over the counter. There's a lot of interest in the CF community in a new over the counter form of it called PharmaNAC. "

source: http://cfnaturalhealth.weebly.com/blog/previous/3


Inhaled NAC:
http://www.ncbi.nlm.nih.gov/pubmed/10090545

Sunday, March 22, 2015

CF Standard of care

https://www.ecfs.eu/print/1152

A dry powder inhalation of tobramycin (TOBI PodhalerTM) has been shown to be of equivalent efficacy [20]. Inhaled aztreonam lysine [21] is recommended as an alternative by both European and US guidelines

Wednesday, March 11, 2015

Colistin

CHMP concluded that colistimethate sodium administration is to be restricted to patients with serious infections that have failed other antibiotics or whose treatment options are limited. However, CHMP recommends colistimethate sodium should be given together with other antibiotics whenever possible. To maximize the effect of colistimethate sodium, the antibiotic should be administered with the highest concentration possible for the treated patient, therefore maximizing its action in time. Despite limited data, CHMP issued a table of recommended doses for specific patients, mainly patients with kidney problems and in children. Additionally, it also recommended dosages for adults when the administration route is directly into fluid surrounding the brain or spinal cord. Relative to dosages, CHMP recommended that these should be issued in international units (IU) and a conversion table should be included with product information.
Commissioned by the European Union (EU), CHMP recommendations will now be evaluated, and the EU issues the final report.
http://cysticfibrosisnewstoday.com/2014/10/28/for-cf-patients-polymyxins-come-back-into-style-to-fight-pseudomonas-aeruginosa/

Monday, March 2, 2015

How to treat lung infections naturally?
Although there are several medical lung infection cures that can easily be administered by a doctor, most patients prefer using natural remedies for lung infection too. This is because the home remedies for lung infection are not only cheaper but are also believed to have fewer side effects, as compared to commercial products. Some of the natural treatment for lung infection options can also be used as a supplement to the medical treatment procedure. Therefore, when seeking ways on how to treat lung infections naturally you may find the list given below very helpful.
  • Humidifiers: Warm or cool mist humidifiers add moisture to the air and eliminate the sputum from the body, when the patient coughs. Taking a hot steam for a few minutes or standing in a steamy shower can also have the same effect of moistening the air, which allows the sputum to loosen and leave the body sooner. In order to enhance the effect of this home remedy for lung infection, a few drops of eucalyptus oil or peppermint essential oil can be added to the misting water.
  • Warm Liquids: The high consumption of water, especially warm water, is one of the most effective natural remedies for lung infection. It makes the sputum easier to eliminate. Apart from water, other liquids that can be equally effective are hot soup and herbal teas.
  • Licorice: The roots of licorice should be chewed on, for a few hours, in order to increase the immunity in the body, which can help fight off the bacterial lung infection.
  • Garlic: This ingredient is used in the natural treatment for lung infection, as well as many other conditions. This is probably because garlic contains antibacterial properties, which works wonders against bacterial lung infections. One clove of garlic should be crushed or mashed roughly, and swallowed, along with a glass of water, especially before bed time.
  • Spices: There are many spices that could help the body in fighting off lung infections faster. A mixture made from cloves, ginger powder and pepper powder should be consumed everyday, as a natural cure for lung infection. Another lung infection natural remedy, made from herbs and spices, is a mixture made by boiling equal amounts of basil leaves, black pepper and ginger, in 50ml of water. The water needs to boil, till it reduces to half its size, before it can be consumed.
  • Diet: Following a healthy and nutritious diet on a daily basis, is very important for improving the immunity in the body. A diet that provides the body with the essential Vitamins, (like Vitamins A, B complex, C and E) can help the body fight off various diseases and infections. In order to make up for the lack of vitamins in a diet, there are some people who take a multivitamin tablet on the daily basis. However, a doctor should be consulted, for the recommended daily doses, before a multivitamin supplement is added to a diet.
In addition to using any natural remedies for lung infection, it is important to follow the right steps to prevent the problem from occurring. This can be done by keeping the environment free of dampness, dust, smoke and other allergens. Those in the habit of smoking should stop doing so completely, as it increases the risks of lung problems and declines lung function simultaneously. There are several exercises and yoga poses too, which can be considered as natural treatment for lung infection. While most of the natural remedies for lung infection are quite effective and relatively safe to use, it is important to consult a doctor before using any of them. Moreover, it is important to remember that home remedies for lung infection help reduce the symptoms, but in order to treat the underlying cause, a doctor needs to be consulted, for medical lung infection cures.

The first thing you need to do is make it a point that you keep your innards warm. This will be of maximum help to fight your condition. Drink tea made with spices for this purpose. You can have a cup of tea made with 4 cloves, cardamoms, peppercorns, a half inch piece of ginger and cinnamon, a tablespoon of fenugreek seeds and 3 cloves of garlic. Add to two cups of water and boil till it halves. This should be had comfortably hot and about thrice a day for best results. Garlic is one of the best things to use for a bacterial infection of any kind. Swallow a garlic clove that has been roughly smashed with hot water each night for good results. It is also important that you keep your body warm when you have a bacterial lung infection. This will also help to break your fever if you have any. You should also try as far as possible to stay in a sanitized environment. This means you should stay away from pollutants like dust and dander. It is also inadvisable to go out where you may encounter more pollution. It is advisable to maintain conditions of great hygiene when suffering from a bacterial infection of the lung. Wear clean clothes and make sure your bedding is changed every two or three days. These small measures will help to bring big relief and will also help to heal faster.