I've had bronchiectasis for over 30 years

@dogtag
Do you have any chronic infections? Like MAC or Pseudo?

irenea8
No

@jnmy No infections in the last 4 years, No inhalers. Just deep breathing "Good Air In & Bad Air Out. When I exhale it is deep and as much as possible.
The doc. Suggested mucinex 2xday I stopped because it dried me out. That's when an older Chinese friend said go to the field & start chopping mullin leaves. They are ripe in the Spring so I harvest alot it, but also keep Mullin tincture on hand. You can buy the tincture on Amazon. Also exercise & spread those lungs out.

@dogtag I may not have understood with all I have read here. Are you saying in the beginning you did the following;
1. Nebulized 2X a day.
2. ACT methods
3. Exercised
4. Took antibiotics for MAC infection
5. Ate healthy
6. Cleared the MAC Infection
However this is now:
1. No MAC infection
2. No Nebulizing .....just deep breathing and exercise
3, Eat what I want healthy or somewhat not.

For myself, I did not start the antibiotics with having a low load of MAC Intracellular (2023) and now. I do neb 2x a day, huff cough, percussion therapy, postural drainage and light 30 minutes of exercise daily. P.S. I am now 2 months into being 83 and often wonder....do I do this for another 7 to 10 years??????????????

I use to drink lemon tea years ago and got away from it habit wise...I need to add that to the types of "tea" I make now. Ginger Tea, Garlic Tea, Ginger and Cinnamon Tea and will finally make Mullin tea with what I have found at the international grocery store but will be boiling it first for ten minutes and then strain it. I made Tumeric Milk drink last year and need to do that once in a while. The Indian Grocery store carries fresh tumeric.

With BE and MAC Infections we all have to do what will help us physically, mentally and psychologically to keep us going and therefore we have to talk to ourselves and constantly make choices and decisions. NOT EASY or in the category of fun.

The pulmonologist visit last week had me hearing the doctor say to me, in a light hearted tone and manner, that it is insane for me not to go on the antibiotics. Because of who he is it did not bother me that he said it and I know he means well. He is one of the few in the OKC, if not the only one, that has been treating BE patients that have been to NJH and Tyler and worked with NJH and Tyler doctors with other patients. He sends the sputum vials up to NJH for testing. I was fortunate to have been told about him by my very good eye doctor.

If I understand correctly, and if anyone is reading this and can help me, my understanding is that the antibiotics won't help the inflammation and the Brinsupri won't help the Intracellular.????? If I continue to keep the MAC at a low load...I may be interested at some point to take the Brinsupri. Want more time seeing how all our comrades of the BE community are doing on it and if they are happy about doing it.

If you have more time to post I would appreciate understanding better your now picture of this BE journey.
Barbara

@dogtag I may not have understood with all I have read here. Are you saying in the beginning you did the following;
1. Nebulized 2X a day.
2. ACT methods
3. Exercised
4. Took antibiotics for MAC infection
5. Ate healthy
6. Cleared the MAC Infection
However this is now:
1. No MAC infection
2. No Nebulizing .....just deep breathing and exercise
3, Eat what I want healthy or somewhat not.

For myself, I did not start the antibiotics with having a low load of MAC Intracellular (2023) and now. I do neb 2x a day, huff cough, percussion therapy, postural drainage and light 30 minutes of exercise daily. P.S. I am now 2 months into being 83 and often wonder....do I do this for another 7 to 10 years??????????????

I use to drink lemon tea years ago and got away from it habit wise...I need to add that to the types of "tea" I make now. Ginger Tea, Garlic Tea, Ginger and Cinnamon Tea and will finally make Mullin tea with what I have found at the international grocery store but will be boiling it first for ten minutes and then strain it. I made Tumeric Milk drink last year and need to do that once in a while. The Indian Grocery store carries fresh tumeric.

With BE and MAC Infections we all have to do what will help us physically, mentally and psychologically to keep us going and therefore we have to talk to ourselves and constantly make choices and decisions. NOT EASY or in the category of fun.

The pulmonologist visit last week had me hearing the doctor say to me, in a light hearted tone and manner, that it is insane for me not to go on the antibiotics. Because of who he is it did not bother me that he said it and I know he means well. He is one of the few in the OKC, if not the only one, that has been treating BE patients that have been to NJH and Tyler and worked with NJH and Tyler doctors with other patients. He sends the sputum vials up to NJH for testing. I was fortunate to have been told about him by my very good eye doctor.

If I understand correctly, and if anyone is reading this and can help me, my understanding is that the antibiotics won't help the inflammation and the Brinsupri won't help the Intracellular.????? If I continue to keep the MAC at a low load...I may be interested at some point to take the Brinsupri. Want more time seeing how all our comrades of the BE community are doing on it and if they are happy about doing it.

If you have more time to post I would appreciate understanding better your now picture of this BE journey.
Barbara

@blm1007blm1007 Azithromycin definitely helps with inflammation. Some people take Azithromycin 3 times/week during spring/fall or during flu season for BE treatment. I can't tell you the mechanism but know there have been studies and plenty of documentation on it, though I haven't read any. I've had bronchiectasis for 20 years (at least) and found that when I got a cold and it went to my lungs, a Z Pak (or double z Pak at times) always stopped the infection, and I could breathe so clearly. I never really understood why, only knew I wanted Azithromycin and would always request Z Paks. I spoke to my ID doctor about it, and she told me that she could put me on the 3x/week regimen, but the concern is if I came down with an NTM again, it could become resistant. I told her maybe next fall we can revisit. I know the European Union recommends this long-term macrolide treatment for Bronchiectasis. Not sure about US. It's very tempting-at least for me.

@kathyjjb Wow, 20 years of work. Not easy. Oh, I did not know what a ZPak was and looked it up, per what I understood from reading it is an Azithromycin pak.
So far it has been nearly thirty years since my having pneumonia....Legionella and Mycoplasma at the same time....It had to be my genes that helped save me besides the 24/7 liquid antibiotics. Since then maybe had to have a 10 day antibiotic treatment for other things maybe twice since the 80's.
So far, no colds or flu either in the last several years.
I have always eaten fairly healthy but more so since the BE diagnosis and then via what my Mom did and had us doing....I take vitamin supplements when I feel I need certain ones...and others continually,, like vitamin D, C. Zinc, Garlic.
Yes, my concern from the start about the antibiotics and with help to keep me on track by Sue and Irene 8 I am still doing 'watchful waiting". I don't want to do possibly, clear, return of MAC, clear etc, etc, ....and then resistant to the antibiotics. So here I am continuing the 'watchful waiting' NJH started me with.
Thank you and Sue for answering.
Barbara

@blm1007blm1007
I can't answer for dogleg, but I can talk about antibiotics and Brinsupri a little.
Some antibiotics, for example Azithromycin, do have anti-inflammatory properties. In the past, some docs prescribed a "prophylactic" dose for people who had frequent exacerbations in hopes of preventing more infections. Of course that poses the danger of creating bugs with greater antibiotic resistance.

Brinsupri won't fight NTM and MAC because it is not an antibiotic. It's role is to reduce the action of inflammation-causing neutrophils. Excessive neutrophils can not only damage lung tissue, but also cause enough irritation to cause more exacerbations.

I had a conversation with my 2 pulmonologists (a team) today about this new drug. One of them has worked with Dr. Chalmers, one of the developers of the drug. They were interested in hearing what is being reported about it on Mayo Connect, especially the reports of increased blood pressure. It was interesting that they are only using it for patients with fairly severe or advancing Bronchiectasis until there is more information about how it works in the real word. They also don't plan to use it for anyone currently on antibiotic therapy because it was not tested with them to see how it reacts/interacts.

I know you have resisted taking antibiotics for quite a while. Is the doctor pressing you because your symptoms, sputum cultures, or CT scans getting worse?

@blm1007blm1007 Yeah, if it wasn't for the difficulty in treating NTM's, particularly macrolide resistant, it would be a no brainer for me. That's amazing about your good fortune of no colds or flu in so many years. My problem is my adult son with Down Syndrome lives with me and his day (DTA) program is like a preschool with respect to germs. He brings home viruses which always go straight to my lungs and then result in exacerbations-requiring antibiotics. He's sick for just a few days and I can be sick for 2 months if I don't get on antibiotics immediately.

@kathyjjb Thank you for sharing all you have shared with me. My last thoughts after reading the above...."You have had and have much to be conscious of, keep track of, and to consider and decide....for yourself and loved one."
I am a bit spoiled, I live alone......helps in some ways and not so much in other ways.
Yes, I turned down a holiday invitation because I didn't want to be around others who have children who have colds and minor illnesses frequently and therefore pass it onto their parents and grandparents. As we know someone might feel perfectly fine but are at a contagious stage and it hasn't fully surfaced to know they are coming down with something.
For myself, I do wear an N95 mask 90% of the time.....hard to do when I make an exception to eat out in a restaurant (that is not often) and have to take the mask off to eat. I also make sure I go when it should be quiet and not crowded. My deepest fear is the possibility of complicating my health and coming down with another illness and not having the energy, physically and mentally, to do the Nebulizing Therapy sessions and all that is required to get well and keep the weight on.
Thanks again for sharing. Have a pleasant/enjoyable holiday season with a good few joyful surprises.
Barbara