Options if MAC goes untreated

Thank you so much for your reply Sue! Your responsiveness and advice is great and gave me hope. I’m going to a new pulmonologist at the moment to get a second opinion because the other Dr is great but virtually impossible to get in touch with. My goal would be to have a care team that in integrated and communicative - there was another forum member who had good communication between all practitioners - that’s what I’m trying to assemble.

Thank you for the saline
recommendation! On my way to see a new pulmonologist and will discuss. This forum is so helpful.

Linda - The words "brick house" come back to haunt me often after the posts.
If you can: How was your particular "brick house" built for your actual house and then for your routines and the things you use and do? Not sure if you have detailed this all anywhere.
Would it be possible for you to detail out this information when you can?
Barbara

Hello Sue and everyone - the new pulmonologist I went to in NYC yesterday (he follows Nat Jewish Health protocol) advised me to take the big 3 everyday and not 3 days a week as my first pulmonologist did. This is because I have cavitary MAC. I’m going to try taking all 9 pills every day, all at once and see how it goes. My diet has always been clean and I’ve ramped up exercise which really helps. I do feel wiped out in this moment after 2 days of full antibiotic protocol but hopefully my body will adjust. Main symptom is fatigue. Be well and Happy Holidays to all.

I'm pretty sure all of us can relate to the fatigue and each has/had our own way of dealing with it. I'm not sure of your age, or whether you are still working - I was in my late 60's and very actively retired when I was diagnosed.
The first thing I did was admit I needed more rest - whether it was a mid-day nap, earlier bedtime, or taking rest days - it kept me going. Sometimes plans had to be changed or cancelled if my body just said "No".
The second was to off-load every chore that I could - either just stopped doing them, my husband and/or adult kids helped, I hired someone, or I used the internet for groceries, everyday stuff, even gifts.
The third, and hardest, was stepping back from activities to conserve energy. In my case, I did less volunteering, if we went out we came home earlier, and I switched from very labor-intensive hobbies and exercise to less strenuous activities - walking instead of biking or volleyball, making smaller gifts instead of full-sized quilts, making simpler meals and eating out with friends instead of entertaining.
I'm happy to say I was able to resume nearly everything a few months after I finished the antibiotics.
Good luck with the meds - let us know if you have questions.
Did the new pulmonologist talk about airway clearance and/or saline nebs?

Glad you found a pulmonologist who follows NJH protocol. Just curious...is the pulmonologist associated with Mount Sinai Hospital in NYC? I ask because it is my understanding that Mount Sinai is working closely with NJH.
Wishing you good days ahead as you "see how it goes."
Yes, be well and enjoy the holiday season.
Barbara

Hi friends -
I’m weighing in as a patient at Mt Sinai in NYC regarding the question of partnership with National Jewish Health. I see my doctor at Mt. Sinai at the National Jewish Health Respiratory Institute. While I love my doctor and feel I am receiving sound guidance and treatment (I’m not taking antibiotics but am doing airway clearance with 7% saline twice a day), I’m terribly dissatisfied with the sputum testing reports that I receive. I do not like the fact that I only get a “yes/no” to whether NTM-MAC is present, along with a quick smear and final smear result with a maximum time of 6 weeks’ growth time. I’ve asked my doctor repeatedly about testing at another lab that can determine what strain of MAC one has, along with the quantity of bacteria and a growth period of 8 weeks, and he said they don’t have that option. That never made sense to me since it’s the NJH Respiratory Institute. After 18 months of up-and-down test results (as many as two negative in a row, but then again I’m back to positive), I decided to become a patient at National Jewish Health in Denver because their lab can speciate and quantify the bacteria present. I am still in the intake process, but my understanding is that I will need to go there once for between 3-10 days, and then from there I will be able to have my sputum tested by their labs and my case will also be followed by them.

On another note, I am seeing a geneticist next week after waiting nearly five months for an appointment since test results showed that I am a carrier for cystic fibrosis and primary ciliary dyskinesia, a genetic constellation my pulmonologist believes may be the source of my bronchiectasis. I read Sue’s post in another thread this morning and she stated the being a carrier of cystic fibrosis is often the source/cause of one’s bronchiectasis, but I don’t think a lot of people know that. It has generally been thought that being a carrier of the CF gene was not a cause for concern, but they are finding now that it can in fact cause some symptoms of the disease to take hold, such as bronchiectasis.

I know there is nothing I can do about my bronchiectasis, except airway clearance and hope it doesn’t get worse, but I am really hoping to be able to clear myself of the infection without using drugs if I can help it. I’ve been told that’s possible, but I’ve never been able to get an answer as to how long that could take. If anyone knows of cases where folks have been able to clear the infection without taking the meds, I’d love to know how long it took.

Thank you to all for your company and counsel on this shared journey that none of us signed up for!

Jill-
There is another gal from NY at National Jewish now or just finishing who has been on this site several times.
I was at NJH in October 2023. I was glad I went in order to have had all the tests they performed that would have taken months to arrange locally. All tests for me were unremarkable other than a second confirmation of my having Bronchiectasis (no cavity, mild BE) and then the first confirmation of a mild case of MAI/MAC.
I believe for those with other tests having come back positive by local pulmonologists, such as a carrier for CF, I think that National Jewish would be a great, if not best, facility to be involved with due to all their years and years of dealing with extensive health problems related to the lungs. This you probably read and why you made your decision to go there.
For me at NJH and Denver it was much like a medical vacation due to the ease of the short five minute drive from the Marriot Residence Inn in Cherry Creek and all the wonderful things that were in the area of the Cherry Creek area of Denver...example Whole Foods and Sprouts and good restaurants if one wanted to venture out to eat.
In one of the threads a couple of people recently gave an answer to the question of how long it possibly takes to clear MAI/MAC without antibiotics. For those who are successful, I believe from what was said...it takes approximately two years. However, please confirm that with your research and readings.
I also am trying to rid myself of the MAI without the antibiotics. Hope I can do it with what I am doing.
Question: What are you doing for yourself when you say you are doing airway clearance? Have you been doing the various methods of airway clearance besides saline, Aerobika etc. How are you trying to break up any mucus or mucus plugs to get them up and out.? I believe you did watch the video Sue sent you that Doctor McShane made.
Barbara

Hi Barbara -

Thank you so much for this info about NJH and the process at Denver. It a sounds very promising. I have my intake interview on Monday so should know more.

As for my airway clearance, I pretty much follow the protocol McShane outlines in her video. The one thing I added as a result of her presentation was starting with the deep breath hold in the beginning. I take 600 mg of NAC two times per day and I find that makes a huge difference in my sputum production. (I couldn’t get any sputum up before.) after nebulizing, I do 10 slow breaths with the Aerobica on my left side, followed by huff coughs and spitting (gross 🤮) and then 10 breaths on my right side followed by coughs and 🤮 and then 10 breaths sitting straight up followed by coughs and 🤮. Then I start the rotation again - left side, right side, sitting straight up. If I feel there is more mucous, I’ll continue a bit, but I find those 60 breaths with coughing pretty much does the trick!

Sorry for the gross details, but we all know this comes with the territory. 🤣

Peace,
Jill

Glad to hear about all the above...and that you have found your way to getting it done. It appears you will know quite a bit more than most patients who go to NJH Denver on their first go round in your understanding of it all.
One of the things I also do, that Dr. McShane's nurse suggested, is laying on your front and finding a way to lower your head and upper torso so that you have your lungs reversed to help move out the mucus. As an example, her suggestion, leaning off the edge of the bed end, if one can do that safely...I couldn't so I found another way.
If you do yoga the bridge position/pose is another suggestion.... if you don't have to worry about acid reflux.
I wish they, NJH, had had a lesson on all different postural drainage positions etc., during the time one is going through the tests and departments with ones visit to NJH. I wonder if you inquired, while there, if they had a department to demonstrate and teach the many/various different positions to help with clearing out the mucus along with their teaching of nebulizing, the Aerobika and the vest that they suggest... they do have a department to demonstrate those three things during the visit. I do not use the vest, I had problems.
Details are important, not gross at all and I am glad we all have one another to be able to use those terms with and not feel grossed out. Yes it goes with the territory. We are all in this journey together in so many ways and sharing helps us all.
Looking forward to hearing about your experience at Denver, NJH.
Barbara