0 Votes
1 Answers
Substitute for Performs

I received a letter from Humana Friday that Medicare has denied coverage for Performist even though I have been taking it for over a year. My doctor's nurse said that they refused to cover a generic that is now available. Does anyone have a suggestion on …

Author: Rush
0 Votes
2 Answers
Hyperbaric Oxygen Therapy

I am having the above medical procedure so I can have a tooth removed and an inplant inserted. The oral surgeon said with the tooth being in the lower jaw the therapy is required. I am concerned about any adverse side effects.

Author: Rush
0 Votes
5 Answers
Where to live - info needed from Dr after Diagnosis

Hi - found this site today and hope i can find a few answers - I have been on a quest to find the best place to live in the USA that is less likely to cause illness to people with bronchiectasis / NTM - also I would like to let the medical community …

Author: bunnyhop
0 Votes
4 Answers
Inhaler

I use a ProAir inhaler and Advair. My question is, how do you clean the actuator when it is plugged? Do you use clorox or vinegar to get it to work? Mine seems to be plugged and I have used hot water to get it unplugged. Also do you find yourself very …

Author: Ruth
0 Votes
0 This question has no answers.
Low Dose Naltrexone (LDN) and MAI

Hi, I'm new to the Community. I have a family member diagnosed with MAI, who is taking multiple antibiotics. I'd like to know if anyone here take Low Dose Naltrexone (LDN) as an adjunct therapy and what your experience has been. I take LDN myself for an …

Author: Kara
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0 Votes
4 Answers
Eliquis

I was recently diagnosed with a fib and was placed on Eliquis. Today I noticed that the mucis I cough up is bloody, I am wondering if this is a temporary problem that I have to work through or do I need to see if I need to change my medications.

Author: Rush
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0 Votes
2 Answers
Bronchiectasis

Is this site active as of 3/26/2022?

Author: Ruth
0 Votes
4 Answers
Thoracotomy

Has anyone had a lobectomy due to mac infection and broncheatasis? The surgeon suggested removing the upper right lobe of the right lung and a portion of the lower right lobe in the right lobe where there is MAC. Just curious if anyone else has had …

Author: JackieH
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0 Votes
6 Answers
Names of pulmos in Ga. and Fla.

We are currently living in Mass. We are looking at over 55 places in Georgia and Florida Can anyone recommend a good pulmonologist in Atlanta, Ga. or St. Petersburg, Fla ?

0 Votes
6 Answers
oropharyngeal flora in sputum sample

I have repeatedly submitted sputum samples and gotten the following response "The presence of 10 or more epithelial cells per low power field indicates contamination with oropharyngeal flora making the specimen unsuitable for processing." Why is this …

Author: BklynProf
0 Votes
13 Answers
Do you practice airway clearance techniques?

Hello! This question is one that I have based on a discussion from the Coffee Break time we had earlier this week. Do you practice airway clearance techniques every day? If so, what works best for you? If not, would you share why you don't? This is a …

0 Votes
21 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
14 Answers
How cautious must you be with water?

This whole disease is sooo frustrating. Different doctors recommend different things so it is hard to know what to do. I beat MAC after 10 years! I try to be careful but evidently not careful enough, because now I have M. massiliense. Same type of …

Author: Tracer
0 Votes
2 Answers
NTM physicians in WASHINGTON state

Can anybody recommend a doctor in northwest Washington who has experience with m abscesses? Preferably Seattle or Bellingham area?

Author: ChristieL
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0 Votes
5 Answers
time to stop meds?

I've been told I will stop meds next month. I haven't talked to ID doctor yet but am curious. Do you stop cold turkey or wean off of them?

Author: Tracer
0 Votes
2 Answers
NTMers: How often do you have lab / bloodwork done?

Every month I get a CBC, plus kidney and liver function checks, ordered by my infectious disease doc, and I assume you all do too. For those of you who have been treated for 2 or 3 or more years, did the monthly lab work continue throughout treatment?

Author: Merry
0 Votes
6 Answers
Share Your Story - Travel

What are some of the preparations that you do in order tomake traveling easier or safer? What challenges with travel have you faced inthe past?

Author: ChristinaH
0 Votes
5 Answers
How to know?

How do you know when you are having a flare up of bronchiectasis? I also have very severe COPD (FEV1 = 21%) so I haven't been able to figure out which disease is flaring. I asked my Pul. and he just said "you're breathing will get worse". Well, duh. I …

0 Votes
12 Answers
Has anyone used Acapella therapy?

If you have used Acapella therapy for bronchiectasis, have you found it useful? I understand they are not really able to be cleaned, so how often do you replace the unit?

Author: DAJ
0 Votes
8 Answers
Arikace

Hi cicimac! I believe that Arikayce offers an AriKares program. They company asks you to fill out this form with your physician. They market that they will help you to find the lowest cost. Download the form with the link I am providing to you and …

Author: cicimac
0 Votes
24 Answers
Covid Vaccine - Life After

For those of you that have received your Covid vaccine, have you been able to enjoy more “peace-of-mind”? What activities are you planning to do now that you are vaccinated?

Author: ChristinaH
0 Votes
1 Answers
Advanced Lung and Bronchial Support supplement by Dr. Sinatra, any experience/thoughts?

Hello everyone and Merry Christmas/Happy Holidays. It's been a while since I've been on, hope all is well... I have a quick question. Has anyone in the community ever tried Advanced Lung and Bronchial Support supplement by a Dr. Sinatra? If so, do you …

Author: Sumter
0 Votes
7 Answers
Does a sputum sample have to be completed in the morning?

My cough is dry in the morning and gets better throughout the day.

Author: Franny
0 Votes
3 Answers
Pulse Oximeter Recommendations

Does anyone have recommendations for a reliable, over-the-counter Pulse Oximeter? I was diagnosed with mild bronchiectasis last year. As everyone can relate, this diagnosis has made the pandemic especially difficult. I've been extremely careful about any …

Author: MaryS
0 Votes
7 Answers
Has anyone had experience with using ultrasound treatments to reduce lung inflammation:

I am at a more advanced stage of bronchiectasis, so I am always looking for ways to reduce inflammation/mucous. I am currently using a Healthy Wave PEMF mat (electromagnetic pulse treatment), which has been helpful in reducing mucous. I also just came …

Author: DAJ
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