0 Votes
1 Answers
Traveling with medical equipment

Good or bad. Give experience traveling with medical equipment. Nebulizer, VEST system, clearance system.....

Author: liyahslola
0 Votes
5 Answers
Hi. I'm curious if anyone who has bronchiectasis is on calcium channel blockers?

I read that calcium channel blockers can cause silent GERD symptoms such as coughing and that this is correlated with respiratory diseases such as bronchiectasis (BE). My dad has been on calcium channel blockers and has had a severe cough and now …

Author: KarenC
0 Votes
2 Answers
Has anyone else found out that they have low levels of CD8 killer T-cells?

My immunologist discovered through blood tests that I have very low levels of CD8 killer T-cells. He says in about a decade they may be able to correct this genetic defect. This may be a piece of the puzzle why I have bronchiectasis and a history of …

0 Votes
3 Answers
False negative?

Has anyone had a negative culture for MAC in between 2 positive cultures. Makes me wonder if there are false negatives.

Author: KC
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0 Votes
4 Answers
Multiple ntm infections from single sample and bronchiectasis

I'm newly diagnosed with Bronchiectasis and as part of the follow up I was tested for TB/NTM, this has shown negative for TB but I've been found to have 3 different NTM infections which were all discovered from a single sputum afb smear/culture, is this …

Author: Annie70
0 Votes
4 Answers
How do others clean their nebulizer cups?

Medicare switched me to Lincare as my service provider for nebulizer equipment. When a new compressor and cups were delivered I was given directions for use. The provider told me that Lincare believes that washing the nebulizer cups with soap is to be …

Author: Margo
0 Votes
2 Answers
Steroid therapy for exacerbation of NTM

My physician orders high doses of Prednisone when I have an exacerbation Is this recommended?

Author: Barb W
0 Votes
2 Answers
Been to National Jewish in Denver

After being off treatment for MAC with bronchiectasis for 3 months my sputum cultures are positive once again. My doc is referring me to National Jewish in Denver for assessment and treatment plan. If you've been can you share your experience so I'll …

Author: KC
0 Votes
12 Answers
Saline Solution Therapy?

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?

Author: Gretchen
0 Votes
8 Answers
What are your side effects? Do you take probiotics?

I am new to lung disease although I’ve had a chronic cough and trouble breathing for two decades. Never saw anybody for it because I was once told it was all from anxiety . January 2015 I decided I should get it checked out and after much testing & many …

Author: teaberry
0 Votes
3 Answers
colistin and insurance problems

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 …

Author: Bmblebee
0 Votes
3 Answers
NTM Treatment

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?

Author: Wendy
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2 Answers
How do you handle public coughing and spitting?

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?

Author: shardan1
0 Votes
23 Answers
Cause(s) of Bronchiectasis

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!

Author: Delia
0 Votes
9 Answers
What is the best way to get results from a nebulizer, using 7% hypertonic saline solution?

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.

Author: jancookz
0 Votes
17 Answers
Is anyone on PPI for GERD problems?

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 …

Author: jancookz
0 Votes
4 Answers
Please help!!!!

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 …

0 Votes
8 Answers
NTM MAI and the bird connection

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 …

Author: bunnyhop
0 Votes
6 Answers
Does anyone have an out of control cough?

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 …

Author: Katherine
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0 Votes
1 Answers
Completed NMT treatment, lung inflammation returned, now what?

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 …

Author: Merry
0 Votes
3 Answers
respiratory equipment source

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

Author: oklawoman
0 Votes
5 Answers
Caregiver supports

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 …

Author: Kristen
0 Votes
1 Answers
PDF question

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

Author: oklawoman
0 Votes
2 Answers
World Conference Registration fee

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 …

0 Votes
5 Answers
World Bronchiectasis Conference 2018

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 …

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