0 Votes
1 Answers
Anyone knows or is participating Ismed investigational therapy for. Bronchiectasis?

I think the drug called INS1007 to treat Bronchiectasis not linked to Cystic fibrosis, Love to know anyone heard or is participating in the test?

Author: Yan
0 Votes
8 Answers
New to this diagnosis and overwhelmed!

Hi, I am very newly diagnosed with Bronchiectatis, Mycobacterium Abscessus, and Aspergillus. I am feeling a little overwhelmed to say the least. I will be going to National Jewish Hospital in Denver for a second opinion sometime in the near future. My …

Author: kwg
0 Votes
2 Answers
Urgently Looking for an NTM Expert in Lexington (Kentucky)

Hi. I'm posting my very first question on this blog. My family member has been just diagnosed with Mycobacterium "Abscessus" Complex by a pulmonologist. From what I've read, I understand that it is extremely important to find an experienced NTM expert …

Author: NM
0 Votes
1 Answers
Bronchiectasis coughing&daily CPAP

Newbie here. Diagnosed last month with Bronchiectasis and severe Obstructive Sleep Apnea. I want to learn and I think many of you have already walked where I’m likely headed. First night last night on my CPAP machine. My Bronchiectasis not riled up right …

Author: DianeJG
0 Votes
2 Answers
MAC, Bronchiectasis and CPAP

I just learned I have sleep apnea and am being fitted with a CPAP. What do I need to know about using CPAP as it relates to my MAC and bronchiectasis? It seems like disinfecting may be a problem. I don't think CPAP mask, tubing, etc can be boiled like my …

Author: sewcrazy64
0 Votes
7 Answers
Alternative approach to MAI and Bronchiectasis

Hi - after treating MAI for a year with the big 3 (azithromycin, rifampin, ethambutol) with no improvement, we essentially doubled the dosage + used Amikacin via nebulizer (after a visit to National Jewish Health). Over a year later, the MAI was gone - …

Author: mcthom
Tags:
0 Votes
14 Answers
Has anyone ever been cured from Mycobacterium abscessus and chelanae?

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.

Author: Serrieann1
0 Votes
1 Answers
Market Research Opportunity

Hi all, BioTrak Research is seeking individuals diagnosed with bronchiectasis to participate in an in-person, 30-minute market research study session. During the study session, participants will be asked to perform a task for dose preparation of a new …

Author: Delia
0 Votes
8 Answers
Anyone else diagnosed with M. Fortuitum?

My first culture results came back from December bronchoscopy. M. Fortuitum is growing. It is one of the so-called "fast growing" NTMs. Anyone else diagnosed with this one? Were you treated for it? I'm searching my references and don't find much …

Author: Merry
0 Votes
4 Answers
How long to get results on an aspergillus culture?

I'm 2 weeks out from a bronchoscopy and I know I have more weeks to wait until the NTM culture is done/read, but I think aspergillus doesn't take that long. I was thinking the last time I had it done it was about 2-3 weeks. Does anybody know? Thanks!

Author: Merry
0 Votes
7 Answers
How Do you clean your clearance equipment?

Rich the acapella can be cleaned. Its in this video a ways.. https://www.google.com/search?rlz=1C1NDCM_enUS783U...

Author: Gretchen
0 Votes
13 Answers
Does anyone use an AffloVest?

I nebulize 3% saline and use the Aerobika and huff cough twice a day. (I have also tried the Acapella.) I ride a stationary bike and walk on a treadmill for aerobic exercise. Even with all of this I’m not very successful with mucus clearing. My …

Author: sewcrazy64
0 Votes
11 Answers
Are any of you taking the Big 3 medications now? Are you able to tolerate them? If not, what are the

Adverse effects of the 3 major NTM antibiotics.

Author: Gretchen
0 Votes
2 Answers
SIMULTANEOUS NTM & LUNG CANCER

Hi, everyone -- Just joined today! I've read this thread HTTPS://WWW.BRONCHIECTASISANDNTMINITIATIVE.ORG/BRO... and would love to know how things are going with Kim. I would also love any input that members can offer for my situation. My lung cancer is …

Author: Ashton
Tags:
0 Votes
4 Answers
Cannabis for Bronchiectasis?

Hello, I am looking for different treatment options for my mother who has Bronchietasis. I was wondering if anyone has tried cannabis (cbd oil, edibles, etc.) for their Bronchietasis? Obviously I feel like smoking cannabis would be counter productive but …

Author: Jadew
0 Votes
10 Answers
Inspiring Words to Uplift a Mood?

We are seeking quotes to inspire and gather encouragement when life gets us down. Living with a chronic illness can bring dark days and loss of hope. Is there a saying or a famous quote, a pearl of wisdom that brings some positive light to your life when …

Author: Gretchen
0 Votes
2 Answers
I feel like Crap !

I'm supposed to fly from SC to Denver on 12/20 for a week. My ritual is to go to bed around 10PM. As soon as I lay down I cough up phlem for a few minutes and then I can sleep for a while-usually. Then up at 7 and do my inhalers Then yogurt and coffee. …

Author: sut
0 Votes
7 Answers
Bronchietasis and Nails

Anyone experiencing nail bed problems and losing fingernails. My experience is I started getting artificial nails in October or December of 2017. I've always had beautiful nails, but I got gel nails and the last lady that removed them, damaged my nails. …

Author: liyahslola
0 Votes
0 This question has no answers.
Has anyone tried Buteyko?

The main idea behind controlling your breathing with Buteyko is that many people over-breath. I have found some success with this for Bronchiectasis. It take lots of practice, but it seems harmless and it's free.

Author: redhead
0 Votes
22 Answers
Any positive stories/tips on successfully managing m. abscesses with bronchiectasis?

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 …

Author: rplaset
0 Votes
21 Answers
Getting to Know You...

Hello everyone I am Kandy from South Dakota. Been sick most my life asthmatic overlapping copd, chronic bronchitis every year. Found I had bronchiectasis in 2014. Many end of life predictions starting at 10 yrs old. 1997 very sick told to get my affairs …

Author: Gretchen
0 Votes
5 Answers
Traveling

I have Bronchiectasis and I am supposed to go to Denver for Christmas. I have not traveled on a plane since I came down with this. I'm wondering if going to Denver for a week is such a good idea. I cough a lot and after my inhalers I cough up Phlem. …

Author: sut
Tags:
0 Votes
17 Answers
NTM and lung cancer

Is there anyone here that got NTM after having chemo/radiation for lung cancer? I am trying to make sense of what NTM is, why the treatment makes me so tired and what I can do to get past the tiredness. Any advice?

Author: kfs52
0 Votes
3 Answers
Is there anyone in the world like me with ongoing symptoms post influenza?

This is a question from participant Elaine. After having severe H1N1 swine flu in 2009, followed by another chest infection within 10 days - my health and lifestyle changed. My main continuing issues are - persistent throat clearing and occasional …

Author: Gretchen
0 Votes
1 Answers
Any contraption or non-medical device that improves your quality of life?

Do you have any item, like a de-humidifier, etc. that has a positive impact on your quality of life while dealing with a respiratory disease? Any recommendations?

Author: Gretchen
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