Two bits of good news!! (and nebulizing with saline)

Sue-
Thanks for your post and the link.
I went from 3 colonies Oct. to March and to 7 colonies of MAI in April. Wish I knew what caused the change.....my outdoor landscape involvment did start in March and I guess I wasn't as careful as I should have been. Who knows.
I feel fine, energy level good, sleeping good and appetite is good. If you will recall I am 81 and 7 months.
You also sent me the link regarding NJH and when to start anti-biotics and when not start due to the philosophy of wanting to avoid resistence problems down the line in one's journey with BE. I understand that but I also wonder if the cliche "nip it in the bud' might also be considered for us once MAI/MAC shows up.
QUESTION: Is that what you did early on, start the anti-biotics and "nip it in the bud rather than wait?
I am not clear on how to understand, interpret the amount of colonies.
QUESTION: Have you come across and read anything to help with that, understanding how the number of colonies relates to the possibility to start anti-biotics? Is that is one of the criteria to start anti-biotics.....per studies/research? Do you know from your readings?
NJH nor Tyler suggested, as yet, for me to start anti-biotics.
My greatest fear with starting, if Tyler suggests starting the anti-biotics this coming month, is the possibility of Candida and keeping it at bay or luckily not having it develop with taking the probiotics. I know, again, diet will play a part with that also in trying to avoid Candida when taking anti-biotics. With having had Candida after a week's round of liquid anti-biotics 24/7 years ago, I eventually developed Candida and suffered all the problems associated with Candida in the body's system. I didn't know, at the time, about Candida and how it can develop with and after taking anti-biotics.. Had a good doctor who recognized it, the Candida, and he helped me rid myself of it with the medication for it.
Looking forward to your thoughts and opinion or other individual's thoughts and opinion.
Barbara, here in OKC.

Sue, you said you do daily airway clearance. Do you mean you do it once a day or twice? I have done clearance twice a day with 7% saline for years but my lungs were feeling so irritated with constant coughing I decided to drop back to once a day for a while to give them a break. It is so much better and still getting up mucus. Just trying to decide if I need to go back to twice a day.
Cindy

Just a question here.. not related specifically to MAC but related to taking antibiotics and the effect on sputum production. I’ll add @sueinmn here.

Do some people notice a major decrease in ability to expel sputum or amount of sputum production when on short term antibiotics( 7-10 days). I typically use Aerobika and have no trouble expelling phelgm. I’m guessing the phelgm builds up anyway, but for some reason taking the antibiotic seems to suppress it? That can’t be good for our lungs. I drank even more water etc.. but I don’t nebulize.

I don’t have MAC but had two flare ups since diagnosis and noticed this happening. Can anyone relate?

Barbara - Mine was far from a "nip it in the bud" situation - I was very sick and weak for months before the docs quit treating it as bronchitis and sent me to a pulmonologist. I had many nodules, fever, severe cough 24/7, lost 20% of my body weight, and couldn't walk a block. Cultures showed both Pseudomonas (in less than 7 days) and MAC (in less than 4 weeks.) It took nearly 2 years to begin to recover my stamina & weight.
If I had not been symptomatic, the doc said he would have put me on airway clearance and watched. This was before the use of 7% saline was even talked about - by the time I finished antibiotics, I was using it - I really feel that plus airway clearance has allowed me to continue to improve for 4+ years.
Are you using 7% saline and daily airway clearance?

Even when I do airway clearance twice a day, I never use 7% saline that often. Also, the respiratory therapist at my pulmonologist told me NOT to do airway clearance to the point of irritation - it will just cause even more mucus production to try to soothe the airways.

So here is my regimen (4+years post antibiotic therapy):
Symbicort inhaler in AM and at bedtime. I also use Mucinex & NAC twice daily to thin my mucus - otherwise it is very sticky.
Airway clearance with or without 7% saline (I only use it 2-3 times week now that I am stable).
Airway clearance may be preceded by yoga, a brisk walk, or done with Aerobika.
Second airway clearance if I feel the need - then usually with Aerobika or after a brisk stretch/balance/weight routine.
If I get a respiratory bug, daily 7% nebs and twice daily airway clearance until better.

As we always saw, everyone is different - I got to this point gradually, and know to back up if I need to - have you asked your pulmonologist for an opinion?

Thanks Sue! I have an appointment later in June so I'll discuss with him

Sue-
Wow, you went through so much before getting the right diagnosis....and as well just as much ..."h".... with having to take and do all to reduce the bacteria to a lesser amount.
.
RE: "Are you using 7% saline and daily airway clearance?"
SALINE SOLUTION: I was told during my visit to NJH in Oct. 2023 (diagnosed 8/22) to do 7% and vest 2x a day.
It is/was/is so uncomfortable doing the 7% due to my bringing up so much moisture that it requires me to stop every five breaths and spit the mouthful of moisture, that comes up, into a solo cup. The moisture created is the foamy, white, bubbly that apparently is water pulled into the lungs from what I have read and been told by the OKC ID doctor and the Dallas Baylor Pulmonologist.... both having practiced and are close to retirement.
STEAM: Because it was so uncomfortable I had stopped doing the saline for a good three weeks and started boiling cold tap water for 10 to 15 minutes and doing it the old way of breathing in the steam.
PERCUSSION: I was also doing my own percussion clapping on my front and back as I walked or stood in front of the sink that has become a convenient spittoon. I was bringing up more plugs each day with doing it this way verses how little I brought up with doing the vest, saline etc.
Also, I was having soreness, I believe, coming apparently from the ribs and that stopped after my not using the vest and doing the saline/neb. However, it may have been due to irritation you speak of in your answer to davis5663.
Thank you for confirming what I guess I was denying, the saline does more than just loosening the mucus....it helps with keeping the bacteria down.... as long as we are careful living life and doing what needs to be done. Guess I wasn't careful enough that the bacteria count went to 7 colonies vs 3. I stopped the saline the beginning of May, it was the April sputum that showed 7 colonies
I will go back on with the saline a few times a week, do the steam and do air way clearance techniques I have been doing.
ANTI BIOTICS: Interesting however,, Both the OKC ID doctor and Baylor Pulmonologist who obviously are not at NJH, Mayo, or Tyler did have the philosophy that I should start the anti-biotics, since I was with very little, small amount, of MAI, The Baylor Pulmonolgist suggested taking it to see if it would clear it up...and that I would know within a few months if it was doing good and if I wanted to I could stop treatment if I felt it wasn't doing any good.
I am waiting to see what the May sputum results are take during my visit in May at Tyler. Will give deep, long thought to the anti-biotics since I do feel well, energy level good, am sleeping well, my PFT was off the scale in the right direction and my appetite is good.
Hiatial HERNIA: I also think the hiatal hernia does add to it all and the need to clear my throat of the substance that comes up and seems to cling to my throat.
Any thoughts, shared information are ALWAYS most welcomed. Thanks Sue.
Barbara

I have mild bronchiectasis diagnosed at Mayo 15 months ago and was thought to have MAC, but the cultures never grew it. I’ve rarely produced sputum.
The Mayo docs prescribed airway clearance with albuterol nebs followed by Aerobika for me, initially twice daily. Once cultures came back negative, Mayo doc decreased it to daily at my request. Once I had a diagnosis, I was able to get into Penn’s
bronchiectasis clinic (local). My pulmonologist there agrees with this plan.
I think the amount of sputum you have determines the percentage of saline needed. I’ve tried all 3 when trying to get specimens- none worked.
It seems that airway clearance is a common recommendation for even mild bronchiectasis.

I could not get sputum out more than once every 2 weeks at most (usually a plug). I started nebbing with 3% saline beginning of March and breathing into the acapella. No difference for the first 2 months. I then increased the resistance on the acapella a little bit at a time, and now I am producing mucus every day, mostly when I wake up and during each of my airway clearance sessions. I have also been taking Mucinex twice a day. I am definitely feeling better, especially while doing cardio. So don't give up, sometimes it does take time to work.

Sue, when you say you couldn't walk a block, was this because of shortness of breath? I was diagnosed with MAI several months ago and I find walking outdoors extremely difficult. I've mentioned this to my pulmonary doctor and by his suggestion, I've set up an appointment with a neurologist. If my walking problem could be from the MAI, I would mention this possibility to the neurologist.