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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
2 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
0 Votes
8 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
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
11 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
6 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
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
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
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
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
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
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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
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
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