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Wed, Jan 8 8:19pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I believe you are thinking of the National Jewish patient lecture series from last Sept. Dr. Jeffrey King talked about the relationship between GERD and bacteria in the lungs. As I recall, it's not the kind of GERD we are familiar with because mycobacteria don't live in stomach acid. He described a test for the kind of GERD that causes lung bacteria. That test requires a measuring device dropped through the nose into the esophagus which must be left there for 22 hours.

I hope someone will post the link again.

Sun, Jan 5 12:51pm · Early Christmas gift - stopping the "Big 3" in MAC & Bronchiectasis

@windwalker and @sueinmn

Thank you so much for your responses and advice when I said I was going to stop treatment. I know it would have been better to discuss stopping with my ntm doctor before changing anything but she was leaving the University of Chicago for Tyler, Tx and was no longer seeing patients here and will start in Tx on Feb 1 and I needed to do something. At the end of this month, I have an appointment with the bronchiectasis specialist who referred me for ntm treatment. When MAC was found in my sputum, the plan was that I would return to her for my pulmonology needs (copd and bronchiectasis) once the ntm was successfully treated. I have been negative for MAC and also for Pseudomonas and klebsiella since last summer. I do have some fungi which appear now and then in my sputum but were not found during a bronchoscopy. My ntm expert told me I could stop the oral meds in June or maybe sooner and to stay on Arikayce as long as I can.

I have been having worsening digestive issues and mucus/breathing issues since November. Both seriously diminish my quality of life.

I stopped the oral meds and Arikayce around Christmas for a week. Because I take everything 3x per week, that means I missed two treatments. There was no improvement in my digestive issues. I have had a ab/pelvic ct scan and a pancreatic/liver/ducts, mri over the last few weeks for issues unrelated to my digestive problems and I am seeing my gastroenterologist in a few weeks. I don't believe the antibiotics are related to my problems and intend to continue them as long as my doctors say I should.

When I resumed the Arikayce I immediately noticed a difference. I had had an exacerbation when I first started it in July and it took a month to recover. My doctor told me to try 3x a week and that worked although I had increasing mucus and shortness of breath. In December, I realized that I was not doing activities that I had done before restarting Arikayce in August. Starting in November, I had a dogwalker for all 3 walks daily, which I had never needed before. I told myself that it was because of the winter weather but our temperature was in the 50's. I also was not working out. I haven't been to the building fitness center since September although I used to be there at least 3x per week. I purchased an exercise band in Nov which I've used twice. And, I have to force myself to go to my health club and I used to love going there. I'm at home most of the time!

I stopped Arikayce right after Christmas. When I had started Arikayce in August,I was unable to do Arikayce and saline and my doctor told me that the Arikayce was more important. I was taking it for pseudomonas and klebsiella then. I was negative for MAC and negative for the other two by September. Without Arikayce, I am able to do 3% saline 2x daily along with a smartvest and aerobika. I am walking the dog again but still have not been to the fc but go to my health club. The mucus and breathing are much, much better.

Thanks for listening and your advice. I will discuss all this with my doctor at the end of the month.

Rita (apologies for the long post)

Sun, Jan 5 11:52am · Percussion Vests in MAC & Bronchiectasis

I have a smartvest and it uses velcro. The velcro is pretty strong and I'm a weakling but I can pull it open. When I first started using it last year, I was getting muscle pains along my sides and back. I was able to reset the thumping (really like that word, Thumper) to a weaker strength and speed. I do the aerobika during the rest periods in my program and 3% saline at the end. The neb cup fits into the aerobika and supposedly one can do all 3 – vest, aerobika and saline – at the same time but my lungs won't let me do it that way. I can watch tv with the vest but I can't read because the words jump around.

Dec 23, 2019 · Saline nebulized inhalation in MAC & Bronchiectasis

Coughing with the first inhale and terrible shortness of breath making it impossible to do the treatment. I have similar problems with 3% and Arikayce but not as intense. While many patients have no problem, my decrepit lungs do not like having this stuff in them!

Dec 22, 2019 · Saline nebulized inhalation in MAC & Bronchiectasis

Oops. You were asking how much .9% and I read it as .9% or 3%. Did your doctor prescribe .9% along with another drug for nebulizer? If so, I would assume the prescription would say what size the vials are. The .9 dilutes the med and more of it would make it take much longer to neb. My 3% and 7% vials are 4 ml.

Dec 21, 2019 · Saline nebulized inhalation in MAC & Bronchiectasis

You don't need a prescription for .9. It's sometimes mixed with nebulized bronchodilators (meds that open the airways) so it's prescribed along with the other med. It's what's in the iv when patients are hospitalized and are given saline because it's the same amount of saline as our normal body fluids. I don't know why your pulmo thought you would benefit from nebbing it. Let me know if you find out. I have a lot of trouble with any saline so something lower than 3% that does some good would be great for me.

Dec 21, 2019 · Saline nebulized inhalation in MAC & Bronchiectasis

Nontubercular mycobacteria.

Dec 21, 2019 · Saline nebulized inhalation in MAC & Bronchiectasis

7% is best but some of us can't handle it so we use 3%. .9% is normal body saline and will not help you cough up gunk. I don't think it comes in other %. You need a prescription for 3 or 7%. Ntm's don't like salt so it is a really great airway clearance tool.