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Also wanted to include...definitely do not stop looking! So much new information coming to light and it is best to fit the pieces together as soon as possible.

Have they checked for PCD (cilia disease)? I had multiple bouts of pneumonia as a child, tested negative for CF sweat test, and was eventually diagnosed with bronchiectasis. Only recently at age 49 did I find out I have PCD. See if they would check her nasal nitric oxide levels to see if they...

Hi Melissa, Thought I would add my 2 cents. I see a holistic doctor for complimentary care and he has me on the Metagenics brand of D3. I take 5000 IU softgels and my kids take liquid drops. I also have non CF bronciectasis, but recently had some genetic testing that uncovered two recessive...

My child is relatively healthy (no cf), but it took me awhile to figure out he has environmental allergies and chronic lung inflammation. After trying conventional medicines/inhalers for over a year, I took him to a holistic doctor. He said no dairy, even though the allergist said it was not a...

Recently came across the AffloVest on another thread that was looking for innovative product ideas. I currently use the Hill Rom Vest, but would appreciate more flexibility. Anybody have one and willing to share their opinion? Thanks

LittleLab - I have not been able to find a recipe for a xylitol solution for nebulizing. Have you come across a ratio? I have found that xylitol was a game changer for my sinuses and would like to try it for mucoid pseudomonas in my lungs. hsnth - I have been using Cayston and most recently...

Hi, I would definitely opt for a pediatrician if possible. I have 3 children (8,13,15) with no CF. My second child was delivered by a family doctor (I had just moved) and was seen by their family practice for the first year. Looking back I feel like Pediatricians are just more in tune with...

My husband and I tried for a year before we got checked out. Found out I had a cyst on my ovary and when the doctor removed it he had to clean up a lot of endometriosis. I got pregnant a month later and now have 3 children. I am 48 now and just read a book called The Hormone Cure. Basically...

I have used Vicks on the bottom of my feet with some success. I usually only have a problem with a unproductive cough after a virus/cold or certain allergy triggers. I have found Zarbees cough syrup very helpful and use nasal oil in my nose before bed. I think it hydrates the passages and...

Try cf2chat. I think she has checked in there on occasion.

I am wondering if your son has polyps and if he has had a sinus culture to determine what bacteria is involved. You may want to check on using Pulmicort in the sinuses if it is inflammation or polyps. If it is PA, I found that antibiotic washes were only somewhat effective and that nebulizing...

You might want to consider allergies. My youngest son (7 no CF) tested negative for environmental allergies, but has indications of having them. I now give him children’s allegra and Flonase and it makes a huge difference. Before whenever he got a cold, the chronic inflammation just extended...

My son does not have CF, but recently was diagnosed with allergy related asthma. He has had allergic rhinitis for years and we recently discovered his pfts were chronically low, but did not seem to respond to an albuterol inhaler. He tested negative on his sweat test, but full pfts showed...

I am 47 and being treating like I have CF. I tested negative for CF with a sweat test in childhood and negative on a basic blood test 4 years ago. The CF doctor told me diagnosis or not, the treatment would be the same. Do you have PA and are you inhaling antibiotics regularly? Also do you...

Is it possible that the hypersal is irritating your lungs? I find a little is productive, but too much is irritating and may cause inflammation. Last summer I had a similar situation and found taking allegra (after reading the noexcuses blog) to be really helpful. For crackles I also try hot...

I also have had trouble tolerating Tobi. It always made me SOB and after about a year I started coughing a lot and having sinus inflammation as well. I have put it aside for now, but found taking benedryl would calm the cough for me.

I also have had trouble tolerating Tobi. It always made me SOB and after about a year I started coughing a lot and having sinus inflammation as well. I have put it aside for now, but found taking benedryl would calm the cough for me.

Thanks for sharing the video - very funny. A few years ago I ended up in my local ER with severe hemoptysis. Even though I patiently explained my diagnosis/ reasoning and had arranged for my pulmonologist to admit me to her hospital the ER doctor would not get it. She refused to call my...

Thanks for sharing the video - very funny. A few years ago I ended up in my local ER with severe hemoptysis. Even though I patiently explained my diagnosis/ reasoning and had arranged for my pulmonologist to admit me to her hospital the ER doctor would not get it. She refused to call my...

I tried using gentimican in rinses and it did not really help. Now I am thinking I did not do it correctly. The phamacist gave me small vials of iv med and I was instructed to put half a bottle in my 8 oz saline wash. Can you tell me the the concentration of gentimican to saline? Thanks