My doctor is recommending that I try colistin inhaled. My insurance will not cover and my 6 months of treatment will cost around $25,000. The doctor's request for an exemption was denied so the cost will be totally out of pocket. Has anyone else had a …

It is appearing more and more likely that MAI treatment is necessary and can no longer be avoided. How is it administered? Are these pills taken at home or an intravenous application? How often if intravenous? Or is it different for each individual?

Does anyone have experience with Saline Solution Therapy? If so, how often do you do it? Is it on a daily basis? Have you had any positive or adverse effects?

I cough and spit out mucus a lot. Sometimes this will happen when I'm out, say in a store or restaurant. I try to cough/spit into a tissue as discreetly as possible, but it is pretty gross. Any suggestions?

Rplaset, Hello! I am so glad to read that you have a plan in place. Knowledge, knowing the steps needed to be taken lessen the angst when dealing with a new diagnosis. I am so glad that your wife was diagnosed early. In the interim, Please ask any …

Adverse effects of the 3 major NTM antibiotics.

I was diagnosed with pseudomonas a few months ago & had a hard time getting it resolved. They had to change antibiotics a few times.

Does anyone know what causes Bronchiectasis? Also interested in hearing diagnosis experiences (i.e. did your doctor tell you how you got Bronchiectasis?) if anyone is willing to share. Thanks!

Bob I tried to get my pulmo to give me the Tobramycin but all he said its expensive and your insurance wont pay for it so he gave me zpak to take 3 times a week.

After taking Nexium (PPI that blocks all acid) for over 3 years, due to problems with the antibiotics for NTM, I read that PPI's cause bacteria to go into the lungs. Don't need more of that! So now I am going cold turkey, with no Nexium for the past 3 …

Does anyone happen to have a list of pulmonologist's that specialize in Non-cf cystic Bronchiectasis in infants and pediatrics in the United States?? I am battling our insurance company over a denial for her to travel from Texas to Colorado for 10 day …

Hi - found out recently that there is a connection with NTM MAI and living with birds - has anyone been told this by a doctor, I saw a new pcp and he was stunned to learn that I was living in a house with a bird (amazon) - I was stunned that no one ever …

My bronchiectasis and MAC was diagnosed in Oct 2015. for 20 years prior, and ever since, I have had a strenuous, every day and night cough that I take numerous medicines and inhalers to try to control. Does anyone else have this much trouble with …

1-2 months after beating the NTM and ending the Clarithromycin (and other antibiotics) I have increased shortness of breath. My pulmo thinks the Clarithromycin was reducing my COPD inflammation, and now the inflammation is back. However, she is hesitant …

I have been diagnosed with Mycobacterium abcessus and Mycobacterium chelanae. Has anyone ever been cured from this? Does anyone know what life expectancy is? I am only 51 years old.

I just discovered you can buy respiratory equipment on ebay. Is that an option for you, Made Pramana?

While it's not targeted specifically towards people with chronic illness, the AARP website has an excellent page full of caregiver resources. It includes helpful information on caregiver basics, physical and emotional health, financial and legal issues …

Does anyone know how to upload a pdf here? I found recent articles on bronchiectasis.

Does anyone have a promotional/discount code for the World Conference registration fee? It is going to cost my husband and I $500 to both register. We habe been saving for almost a year for this, since we are turning this conference into a road trip …

How should GERD be diagnosed especially if it may be silent? And what kind of treatment is there? i.e. how aggressive should one be in persuing treatment in an effort to eradicate chronic NTM not eliminated by multiple courses of antibiotics

How many on this forum are HCP with bronchiectasis? I am an RN.

I know I asked this a while back, but has anyone heard anything about 3rd World Bronchiectasis Conference in DC July 12-14th? We are planning to drive from TX with all 3 kiddos and both my parents in their rv and need to make our reservations for our …

Recently we were told by our daughter's geneticist, that she was almost positive she had Opitz G/BBB disease. She said Bronchiectasis, as well as laryngeal cleft and autism are symptoms of the rare genetic disease. We are currently awaiting her test …

We have recently gotten a referral approved for out of state out of network specialist. Was curious if anyone had any experience with Dr. Charles Daley at Nation Jewish Health Facility in Colorado?

My most frequent exacerbations show up as pleuritic pain, sometimes accompanied by extra lung congestion, sometimes accompanied by fever. Usually 1 or 2 days of extra tiredness. I generally rest, apply heat, take Advil, maybe extra Mucinex. But I just …