MAC in sinuses + lungs?
Hi everyone! I’m looking for anyone else who has been diagnosed with MAC (abscessus) in their sinuses as well as MAC (avium) in their lungs? Thanks, blessings to all, Brenda
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Is Pulmosal in business or out of business? Any other companies make pH balanced saline?
If bronchiectasis is caused by GERD, wouldn’t nebulizing acid into the lungs twice daily worsen the condition?
If you look for Pulmosal to buy on the internet, you will see limited availability. It is manufactured or distributed by either Pharma Caribe or WestMed. Maybe you can do a little detective work to find out?
As for "If bronchiectasis is caused by GERD, wouldn’t nebulizing acid into the lungs twice daily worsen the condition?" --- Hmm - First of all, the issue with GERD & bronchiectasis is aspiration of foreign matter into the lungs - not just acid but food particles, then having it rest there as an irritant for many hours, eventually causing damage.
I wouldn't describe nebulizing saline as "nebulizing acid" - and its purpose is to induce coughing to thin and clear the mucus and other secretions in the lungs. The level of acidity in generic hypersaline is not sufficient to have raised concern in studies for people with either bronchiectasis or Cystic Fibrosis. I'm sure if it was a serious issue, NJH would not make it part of their treatment protocol.
Only you can decide about using the saline for yourself. What other measures are you using now?
Sue
Thank you, Sue, for your input.
I hope I understand your question. You mean other measures I use to do airway clearance?
Twice daily, I use 1-2 puffs of Albuterol, 7% “Pari-Sal” saline solution and the Vest. For me it is the most effective way.
Very interesting. I am new to this forum. I was diagnosed with MAC back in 2008 was only treated for a couple of months- became allergic to rifampin and then elevated liver enzymes on remaining 2 antibiotics(Ethambutol and Azithromycin) Treatment was stopped at that time and nothing else done I have been stable until 2018 when I had a tooth pulled and had earache then sore throat then sinus issue and down into my chest. I have been sick with sinus and lung issues since. (No sinus issues to speak of before that) I was very sick Aug/Sept 2021 and Jan 2022 Had sputum culture and CT done to find MAC present as well as pseudomonas Had 2 sinus surgeries Feb 2020 and July 2022 and sick since MAC confirmed in sinus as well as lung and just beginning tx again (clofazamine, Ethambutol and azithromycin) Got sick again lung and sinus over past couple of weeks - did another sputum sample and pseudomonas present again. Had to stop MAC tx and switch antibiotics to treat pseudomonas. In my opinion, looking at recent events- I believe I developed the pseudomonas when tooth extracted- was treated with high dose steroids and maybe reactivated my MAC? I have said all along my tooth being pulled had something to do with me being sick.
Please see my comment further down in comments New to this forum so not sure how it all falls under comments
I have been diagnosed with MAC Avium in both lung and sinus- please see my comment about dental involvement
I have a deviated septum and they initially thought that was what was causing my respiratory infections in 2021. They would start in my sinuses and Ears, and move to my lungs - then turn to pneumonia. I have scheduled a septoplasty three times - each time I've either ended up in the hospital, not been cleared, gotten COVID - it must not be meant to be. Then they said it was GI related. An EGD ruled that out. I'm only 32 and now have tubular bronchiectasis - diagnosed April 2022. I've had MSSA pneumonia 7 times.
You may not be wrong about all that @mckee5. I’m sorry. ( irene5)
Have they done a culture of the bacteria in your sinuses and lungs to determine what it is that keeps coming back?
That was one of the missing pieces in my diagnosis - it turned out I had MAC and Pseudomonas in my lungs - once treated and gotten under control, I have done much better
Yes. Both. MSSA
pH is a measure of the concentration of hydrogen ions (H+) in a solution.Even 7% saline is only sodium chloride solution,it doesn’t contain any hydrogen ions, so the ph of 7% saline is same with the distilled water not acid liquid.