My MAC and bronchiectasis treatment

I haven’t commented as I don’t know if using the 7% saline solution is the reason for my success or not.....I guess even after a year or more on this forum, I have not contracted any major infections that necessitated antibiotic interventions for bronchiectasis. I was diagnosed in 2017, so at this point, I guess I’m a compelling reason to use it! However, when I say things like this, I get worried something will jinx everything as the pulmonologist said this disease moves at its own pace....unique to each person.....

@tinaesims I’m glad to hear you’re doing so well! I do hope you’re getting regular checks of your hearing. I already had some tinnitus and some mild high frequency hearing loss when I started the Big 3 daily (I guess from my age, 69, and lots of music exposure and loud kids over the years). I had follow up testing every 3 months, and at about 6 to 7 months in, they detected a small loss of hearing and we stopped the azithromycin. The ID doc substituted ciprofloxacin. My hearing has been stable since then, but my understanding is that once those cells are damaged, you don’t usually get that function back. The most sensitive test they did on my ears was called DPOAE (Distortion Product Otoacoustic Emissions testing) and they said it would be the earliest to pick up new damage.

@sueinmn I’m at 12 months now on daily antibiotics (I had a small cavity or 2). I had to drop azithromycin at about month 7 because it was damaging my hearing and substituted ciprofloxacin at that point. My cough has always been dry, so I had no treatment until I coughed up some blood and had bronchoscopy to get samples for culture. So, no idea about current status or when/if I achieved culture negative status. I just had my first follow up CT scan which looks somewhat improved, but not perfect by any means. I see the id doc in a couple of weeks to decide what to do next.
I take one Florastor capsule with the ciprofloxacin in the morning, a multivitamin, calcium tab, and one Culturelle capsule mid-day, and the rest of the antibiotics on an empty stomach at bedtime. I have tried the Aerobika but it doesn’t seem to change anything, so I don’t really do it. Never needed an inhaler and haven’t tried the saline. Think I might want to try the saline at this point after reading so much about it here, and especially as I think about coming off antibiotics.
Aggressively managing “silent reflux” has been key for me I think, and I boil all my drinking water now. If I eat chocolate or pizza, especially late in the day, or eat too close to bed time, my cough comes right back! Stress will definitely do it too. And I never lie down with my head and chest less than 30 degrees...unless I’m getting a CT scan!

@migizii, From my point-of-view not needing an antibiotic for a year or close to it qualifies as a big success. I seem to need a round every four or so months. Hope 7% is gonna change all that. Anyway, congrats to you for makin' it a year.

I have been taking the 3 meds for three months. Still have digestive issues with stomach pain. I have lost 20 lbs. Will the digestive issues eventually stop? The excess coughing has subsided so it is working.

@marthachs You may want to consider talking to your dr about going on maintenance meds. The infection may be mostly gone, but the reason you were able to catch is not. That is why there is a high incidence of the mac returning. I feel like now that most of us are on the 7% saline; that has helped curb this quite a bit. I have tested negative for mac since 2014, but I have been on monthly maintenance antibiotics up to the present. At first I was taking ciprofloxacin and doxycycline every other month for 10 days. Taking meds 10 days a month are very do-able, and it did knock out my mac. I later switched to just doing the cipro bi-monthly and tobramycin bi-monthly to keep pseudomonas away. All treatments must be tailor made for each patient. My treatment plan will not work for everyone.

@migizi Hellooooo! Just want to say this; there is a reason salt was used to preserve fish and meat over the millinium. Bacteria won't grow in it! Stands to reason that mac wouldn't like salty lungs. Just sayin'....

@marthachs From all that I have read, one should take their probiotics three hours apart from their antibiotic. The antibiotic will kill the probiotic for the most part. As far as pizza and chocolate causing you to cough; many of us have food triggers with this disease. When I had an active mac infection; most sugary food and gluten foods made me cough constantly. Pizza has a higher than usual amount of gluten in it. Many people in this group have stated the same; sugar & gluten. I did an elimination diet for years to figure out all of my food triggers. Besides sugar and gluten, it was food dyes as well. I could not drink Mountain Dew or eat M&M's due to the yellow and blue dye. Now that my infection has cleared up, I am able to tolerate sugar and gluten much better. I still avoid food dyes whenever possible. I stick to a whole foods diet. These are just 'tid-bits' from someone who has been there.

Idle musing about antibiotics led to this thought. What little I know about commercial fishing happens to include awareness of one of it's downsides, i.e., something called "by-kill," the fish that are unintentionally caught and die along with the cash crop, but never end up on the plate of a person who eats things that swim.. An analogy fits nicely to what happens when we take an antibiotic to destroy an enemy microbe and unavoidably destroy a host of the good guys and gals in our gut; our gut microbiota if you will. It's why I'd bet lots of habitues of this forum swallow a probiotic capsule or, like me, eat a bit of fermented food each day. And now that there's lots of buzz about a communication "axis" between one's gut and one's lungs there's even more reason for us to keep healthy down there. Who would've thunk it? I realize I'm preachin' to the choir, but if you're a new "choir member" I'll add just for you, you don't have to take a pill or even ferment your own probiotic food. No, you can buy "unpasteurized" sauerkraut or kimchi in the refrigerator case at your grocery store. In (gut) Health, Don

@derbeltal Well, everyone is different - you will hear that a lot here! My digestive issues were up and down the whole time on the antibiotics - them getting much worse after 6 months of daily meds contributed to the doc stopping the drugs. I have been off for 6 weeks now, and the stomach issues are subsiding. Here is what I have been doing, at the direction of my primary doc, to help it along.
Take daily probiotics. Use a proton-pump inhibitor (PPI) - in my case Omeperazole daily, in the morning. She originally suggested two weeks & stop, then continue at two week intervals, up to 2 months, if the issues persist. I will try stopping again next week, and am hopeful of being done as my stomach is feeling much better. (She also said to take Tums or similar for digestive upsets, something you are not supposed to do while on the antibiotics.)
To counter the weight loss, which I could ill afford, I have been forcing myself to eat a small high-nutrition, high-calorie bit of food every two hours for over a year. I eat an ounce of cheese, a handful of cashews, a scoop of peanut butter, a scoop of guacamole on crackers, 1/2 a protein bar, 6-8 ounces of high-calorie homemade fruit/veg/protein smoothie or similar. I do it, whether I am hungry or not, from 10 am until at least 6 pm, plus meals. Also, Carnation Instant breakfast in my coffee. This stopped the weight loss, but since stopping the meds I still have no appetite and haven't regained any weight.
My primary says to be patient - it is not unreasonable to take 4-6 months for everything to rebalance after 18 months of the meds.
Good luck as you continue this journey. Feel free to ask more questions as they arise.
Sue