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MAC: Just how well do nebs work, anyway?
Good afternoon,
Like many of you, as I sit with my "pipe" in my mouth for seemingly endless hours, I often wonder "Does all of this do any good? How deeply is this penetrating into my lungs since most of my bronchiectasis is in the lower lobes?"
Let me tell you a little story about my past few weeks...
On Fathers' Day, I started coughing like BT (before treatment), my lungs hurt, no energy, ... I looked at my trusty green machine and realized it was lonely - I hadn't used it for a few days. So back to faithful daily use, and it helped a little, but the darn cough was getting to be 24/7, so off I went to the doc. She changed my neb (temporarily) to DuoNeb to try to open my lungs better, stopped saline to calm the irritation and ordered a few days of steroid too. Boy, the junk really started to come out!
Then I restarted the saline, and just like I remembered from my early use, every cough was like licking the salt off my Margarita glass. But the cough is 90% gone, my O2 sats are almost (my) normal, and the fatigue is almost gone. This morning I realized that yesterday's saline vial wasn't used, oops, it had fallen on the floor. Then I ran off to do errands & chores.
GROSS ALERT!
When I started to cough, I was STILL bringing up a ton of mucus (after 48 hours) and it still tasted like salt.
Since 7% saline has been shown to inhibit or stop the growth of MAC bacteria, I find that VERY happy news - it means that salty fluid stays down there, bathing our lungs, even if we occasionally forget or get lazy (not that I'm recommending that...)
Perhaps that's why those of us routinely using hypertonic saline are having fewer exacerbations, and why I didn't end up as sick as I have in the past.
What has your experience been?
Sue
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Seems no matter how long we're working at this, we do forget and get lazy...now to keep me clear until the pulmonologist can see me in August she is asking me to neb the 7% saline 3 times a day! Talk about feeling a-salt-ed.
Sue
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5 ReactionsHello @crepass. A short round of antibiotics for those with bronchiectatsis is usually not a good solution. If that is your condition, it is ongoing and usually progressive. Because of this, opportunistic organisms will always be a threat. My dr at Mayo had me on the cipro for 10 days every other month indefinitely. The organisms we catch are tough and short rounds of antibiotics don't cut it. I tested negative for mac after one year on that regimen. I have not had not tested positive for mac since 2014. I did, however catch pseudomonas in 2016, and it was knocked out in a month after nebbing tobramycin. I was kept on that med for three more yrs. because these 'bugs' we catch can appear to be gone, but in fact were only knocked down to an undetectable level. Then, they rear back.
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3 ReactionsI feel like I need to do it 3x a day too.
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2 ReactionsSue, you have just written my own recent experience. I got lax with the nebbing of 7% saline and took a break from doing it. Bad idea! I developed a cough because I had contracted aspergillus infection, lower O2 levels, they would drop scary low when I walked, and had zero energy. I went back on my tobramycin 3 week ago and nebbing my saline religiously. Cough is gone, oxygen levels back up, energy levels climbing. I have learned my lesson to not let my guard down again.
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2 ReactionsThanks Terri, That will be on my question list when I talk to the pulmonologist next week.
Sue, Tell us about DuoNeb.
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1 ReactionDuoneb is irpatropium bromide (a bronchdilator) and albuterol (a beta-agonist) combined in a single neb. You get a full dose of each in half the time.
It works really well during an exacerbation as it opens my lungs and eases the spasms - quiets cough and eases tightness in one. The rest of the time I use levalbuterol, because the duoneb send my tremors into overdrive.
Sue
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1 ReactionHas anyone tried using distilled water with Food Grade Hydrogen Peroxide in a nebulizer to stop the MAC and bronchiectiasis? I have been using it for months and feel that it has helped rid of some of my lung infections. I cough up a lot sputum. I don't want to go to the pulmonologist because they want to put me on the drug program. Doctors are taught that is the only remedy in medical school. I have 2 friends that have been on the drug program to no avail. Perhaps it keeps it from spreading, but doesn't get rid of anything. You have to be on the program for life, it seems. They also had some bad side effects.
Welcome to Mayo Connect and the MAC/Bronchiectasis group. We have wide ranging discussions about this rather rare condition, and share a lot of information aimed at keeping ourselves healthy and off the hated Big 3 and other antibiotic therapy.
The good news is, you got me diving into MAC research again. I always seem to find something new. The bad news is, there is no research that shows nebbing a mixture of peroxide and water has a negative effect on mycobacteria on any of the authoritative sites with regard to Bronchiectasis or MAC/NTM (non-tubercular mycobacteria).
What you may be seeing is the benefit of hydration in thinning the mucus so you can cough it up better.
However, there is a treatment, which we have learned about from National Jewish Health (NJH) an epicenter for treatment of these conditions. Many of us have excellent results from nebulizing 7% saline solution. It does a number of things: moisturizers the lungs, thins mucus, helps induce coughing, and has been shown to inhibit the growth of NTM.
You can click on the magnifying glass above and search for 7% saline to find the discussions.
I have maintained off antibiotics for nearly 2 years by nabbing the high strength saline and doing airway clearance.
Sue
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3 ReactionsHi Sue, what airway clearance do you do except neb saline? I have done several months postural drainage (I have GERD , so with empty stomach in the morning and 3 hours after dinner) , my latest AFB test has significant jump on number of colonies count, this makes me very nervous because I just stopped meds in June. So if I could not do PD, what else I could do to clear the mucus in my lower lobes?
Thanks