0 Votes
19 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
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
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
0 Votes
15 Answers
What is pseudomonas? Has anyone experienced pseudomonas? If so, what was the treatment?

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

Author: Sheila F
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0 Votes
10 Answers
Gerd and chronic NTM

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

Author: Barb D
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
12 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
0 This question has no answers.
Market Research Opportunity

Hi all, Schlesinger and Associates is looking for individuals diagnosed with NTM lung disease (including MAC) to participate in a 60-minute telephone and web-based discussion about NTM. The goal of this research is to understand personal journeys with …

Author: Delia
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
1 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
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
5 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
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
2 Answers
Who uses Mucomyst? Please share experiences, thanks.

I used it for some years its strong and smells awful but it does the trick. I had the 2.0 I do believe. Some ppl it maybe to strong and really irritate the airways. Now I have hypertonic saline much better than this. There is a supplement that does the …

Author: suelipton
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
Anyone ever used suction machine at home to get rid of mucus?

Anyone ever used suction machine at home to get rid of mucus? I produce a lot of mucus most of time. It takes time to do nebulizer with saline, coughing out stuff. Would it be much fast to use suction machine? Just want to get your opinions and …

Author: Yan
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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