0 Votes
7 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
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
0 This question has no 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
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
16 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
3 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
21 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
0 This question has no answers.
HCP and bronchiectatsis

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

Author: oklawoman
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 …

0 Votes
5 Answers
GENETIC LINK TO BRONCHIECTASIS

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 …

0 Votes
3 Answers
Colorado

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?

0 Votes
2 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
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
4 Answers
Do others have recurring flareups in the form of pleurisy?

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 …

Author: Connie
0 Votes
3 Answers
The coughing is increasing. Do any of you take cough pills, and do you recommend?

I have been prescribed cough pills by my pulmonologist, but I don't take them, thinking that it's better to get the mucous up and out than let it be a breeding ground for infection. But I pretty much cough all day long now, and would like some relief. …

Author: Cindy G
Tags:
0 Votes
9 Answers
Social Issues and Bronchiectasis/NTM

Yes, so many with chronic disorders face these challenges. I feel that you learn over time how to face saying "no" when you are truly unable to function and attend an event. True friends, family will get better insight of what you are dealing with over …

Author: oklawoman
0 Votes
1 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
7 Answers
Has anyone had success applying for Social Security Disability?

I needed to quit my visual art high school teaching job of 33 years due to my Bronchiectasis. I would frequently have bronchospasm, coughing for several minutes with difficulty breathing, sweats while trying to teach 5 classes per day of 40 students per …

Author: Kel
0 Votes
3 Answers
World Conference 2018

Does anyone know the where, when and how to register for the 2018 conference? I did see it was going to be in Washington, D.C. in July 2018, but have not been able to confirm dates. I also cannot find how to register? My family is really wanting to …

0 Votes
6 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
0 This question has no answers.
Severe Long Term Bronchiectasis

I was diagnosed in the 80's, and have been in the hospital for flare ups, more times than I can count. I almost never feel well, but continue to carry on as tho I am . I think my question might be: How do others with this disease deal with the copious …

Author: MaryLyn
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
4 Answers
Use of Supplements and Essential Oils

Hi!!! First, Merry Christmas and Happy New year! Does anyone with bronchiectasis use supplements and/or essential oils? If so, why, how and when? I've used supplements for many years and have used essential oils sporadically, and am using EOs more now. I …

Author: oklawoman
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