Nebulizer and saline treatment with daily exercise

Posted by laurademaine @laurademaine, Apr 30, 2022

Hi there. I was diagnosed with NTM MAC in January 2022 Confirmed with CT/PET scan and scope. Had. 5.5 cm mass in the right upper lobe. The only symptom I have is fatigue. No coughing, no blood, night sweats, shortness of breath. Nothing. The pulmonologist and ID doctor want me to start the big 3 antibiotics. I’m reluctant to do so because Overall I feel good and also I will be moving to another state in 2 months at which time I will need to find a whole new set of doctors. I would love to know if anyone out there has a pulmonologist and or Infectious Disease doctor in the Phoenix area. Also has anyone tried a homeopathic approach by just using a nebulizer and saline to clear the lungs and get daily exercise like walking, bike riding, yoga and meditation. I am really leaning towards this treatment for the next 6 months, then have a CT done afterwards to see if they’re any changes in the size of the mass and how my overall health is. Please let me know your feedback on this. Thanks.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Laura, I applaud your reluctance to start the poisonous trio when there isn’t much, if anything, beyond the good microbes that they’ll be killing.
And too, if homeopathy is equal to the task what a story you’ll have to tell at your next soirée.
My “go/no go” with the antibiotic is whether or not I have a fever. Don

REPLY
@thumperguy

Laura, I applaud your reluctance to start the poisonous trio when there isn’t much, if anything, beyond the good microbes that they’ll be killing.
And too, if homeopathy is equal to the task what a story you’ll have to tell at your next soirée.
My “go/no go” with the antibiotic is whether or not I have a fever. Don

Jump to this post

Thanks for the feedback Don. I think it’s worth a shot. If I feel ok I hate to put myself through the nasty antibiotics and all the side effects.

REPLY

I was convinced and took them daily for a year I felt absolutely awful on them I had daily diarrhea, stomach ache and sickness so many symptoms to go on about. None of my local GP's can treat me correctly as they do not know anything about the disease. I'm off my medication now two weeks. Today was the first day in a year that I could take my dog for a walk in the forest I got in 10k steps I've not done that many steps in a year because of the horrible side affects. Many get on great with the medications I just wish they worked for me. I'm gonna stick to my daily neb and walking when I can. I've yet to tell my consultant in two weeks I no longer take them. I cannot see that appointment going to well. Best of luck and I hope you will feel better with your decision

REPLY
@catherine83

I was convinced and took them daily for a year I felt absolutely awful on them I had daily diarrhea, stomach ache and sickness so many symptoms to go on about. None of my local GP's can treat me correctly as they do not know anything about the disease. I'm off my medication now two weeks. Today was the first day in a year that I could take my dog for a walk in the forest I got in 10k steps I've not done that many steps in a year because of the horrible side affects. Many get on great with the medications I just wish they worked for me. I'm gonna stick to my daily neb and walking when I can. I've yet to tell my consultant in two weeks I no longer take them. I cannot see that appointment going to well. Best of luck and I hope you will feel better with your decision

Jump to this post

Hi I was diagnosed with MAI and bronchietasis last August. I really have no symptoms like coughing or feeling tired. My pulmonologist said she would want to start treatment but she wanted me to see an ID doctor and have him decide. When I saw him he said he would not put me on the meds because I had no symptoms. He said exercise and airway clearance is the most important thing I could do. Then he would do. CT scan every six months. Sometimes you can clear this by doing these things. Right away I started walking 5 miles every morning 7 days a week and clearing my airways with my vest . I do that twice a day each time 20 minutes. So far I feel great with no effects at all. I feel so good that I have to remind myself that I have it. I even had another CT in February where everything remained stable.This has so far worked for me. I do not want to take the antibiotic treatment if I don’t have too. I will push myself to continue what I am doing. I strongly believe this has made all the difference in how I feel.

REPLY
@catherine83

I was convinced and took them daily for a year I felt absolutely awful on them I had daily diarrhea, stomach ache and sickness so many symptoms to go on about. None of my local GP's can treat me correctly as they do not know anything about the disease. I'm off my medication now two weeks. Today was the first day in a year that I could take my dog for a walk in the forest I got in 10k steps I've not done that many steps in a year because of the horrible side affects. Many get on great with the medications I just wish they worked for me. I'm gonna stick to my daily neb and walking when I can. I've yet to tell my consultant in two weeks I no longer take them. I cannot see that appointment going to well. Best of luck and I hope you will feel better with your decision

Jump to this post

I lasted 6 weeks on the big three. I was treated by a pulmonary doc but I don't feel he knew much about MAC and the different options on how to take the meds. He never even brought up the option of airway clearance. The most hurtful thing about it all was that he never offered to refer me to another doctor–pulmonary or infectious disease specialist. It was through this forum that I was guided to a doctor who knew how to move me forward. I've been on this trek for close to 3 years–with Pseudomonas being my primary problem. Otherwise just doing airway clearance and keeping my doctor informed of any changes I see in my symptoms so he can make any needed adjustments. I say keep reading, learning and reaching out for help. You'll find what works best for you. God bless you. Faye

REPLY

@laurademaine,
Hello Laura,
I was diagnosed spring of 2018 with mild MAC, Bronchiectasis and small nodes on the lung. My pulmo said to hold off on any treatment but to just "watch". I went to Mayo for a second opinion and they were in agreement. I was to have yearly cat scans to make sure the nodes did not change. I did that for several years, they did not change and now are no longer followed. When you say mass on your lungs, are you referring to nodes? The Mayo Dr who I really liked also thought my acid reflux had something to do with my condition. Aspirating fluids into my lung at night. He suggested sleeping on a wedge and no food or water 3 hrs before bedtime. That worked for me!!
It has been 4 years now with no need for antibiotics. I have a little shortness of breath and fatigue sometimes. Like you, I exercise (walking bout 2.5 miles a day) eat well…plant based only and meditate. I am so opposed to taking the 3 antibiotics and hope I never have to. The only other thing I do is nebulize the 6% saline solution and take NAC which is a wonderful supplement that I feel is helpful for the lung. The nebulizing makes good sense in clearing out the mucus in the lung. I suggest a second opinion from a Dr that specializes in MAC. Pulmonologists (including my local Dr) sometimes do not seem to keep up with MAC or just do not treat many patients with the disease. It sounds like you are fortunate with your lack of symptoms. I would not hurry into antibiotic treatment and suggest that you review posts on this site as often the antibiotics have a negative side effect and sometimes do not kill off the MAC.
Oh…including a good snippet on NAC.
"N-acetyl-cysteine (NAC) is included in the World Health Organization’s list of essential medicines; a list that details the most relevant medications needed for a basic health system [1]. Acetyl-cysteine is a derivative of cysteine in which an acetyl group is attached to nitrogen. Due to its disulfide reducing activity, NAC is used as a mucolytic agent to promote expectoration [2]. NAC is commonly prescribed as an adjunct therapy in patients with a wide range of respiratory diseases characterized by formation of thick mucus, such as cystic fibrosis [2–4]. At high doses, NAC results in significantly improved small airway function and decreased exacerbation frequency in patients with stable chronic obstructive pulmonary disease (COPD) [3, 4]. NAC’s mucolytic activity is also the basis of its use in liquefying sputum samples for the microscopic detection of acid-fast bacilli (AFB) in suspected pulmonary tuberculosis (TB) patients [5]. Furthermore, in both experimental animal models and clinical studies, NAC displays a protective effect on acute liver injury induced by anti-TB drugs in acetaminophen-dependent or independent conditions [6–11]. In patients with type 2 diabetes, NAC holds promise in primary prevention of cardiovascular complications and systemic inflammation [12–14]."

This excerpt is from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5084440/ It is entitled N-acetyl-cysteine exhibits potent anti-mycobacterial activity in addition to its know anti-oxidative functions. I personally take NAC 600 mg 2x a day. It is over the counter.
Take care.
Kate alleycatkate

REPLY

I was diagnosed with Bronchiectasis and MAC in Feb 2020. In my readings, I found that one can get rid of MAC through regular airway clearance. Because I was asymptomatic, my pulmonologist said he'd take the "watchful waiting" approach. To avoid the Big Three, I did airway clearance for a year and a half – nebulizing, aerobika, percussion clapping three times a day along with daily exercise of at least 30 minutes each. I did acupuncture and herbal medicine also. But alas, my sputum samples kept coming back positive for MAC. When I started having fatigue and weight loss (lose 10% of my body weight) I gave up and in August 2021 I went on the Big 3. Fortunately, the side effects are mild. My last two sputum samples have come back negative and I'm waiting for the third. If you can, send you next sputum sample to National Jewish Health and ask them to do a colony count. If your colony count is low enough, then NJH doctors would say you don't need to be on the Big 3.
lora jo

REPLY
@alleycatkate

@laurademaine,
Hello Laura,
I was diagnosed spring of 2018 with mild MAC, Bronchiectasis and small nodes on the lung. My pulmo said to hold off on any treatment but to just "watch". I went to Mayo for a second opinion and they were in agreement. I was to have yearly cat scans to make sure the nodes did not change. I did that for several years, they did not change and now are no longer followed. When you say mass on your lungs, are you referring to nodes? The Mayo Dr who I really liked also thought my acid reflux had something to do with my condition. Aspirating fluids into my lung at night. He suggested sleeping on a wedge and no food or water 3 hrs before bedtime. That worked for me!!
It has been 4 years now with no need for antibiotics. I have a little shortness of breath and fatigue sometimes. Like you, I exercise (walking bout 2.5 miles a day) eat well…plant based only and meditate. I am so opposed to taking the 3 antibiotics and hope I never have to. The only other thing I do is nebulize the 6% saline solution and take NAC which is a wonderful supplement that I feel is helpful for the lung. The nebulizing makes good sense in clearing out the mucus in the lung. I suggest a second opinion from a Dr that specializes in MAC. Pulmonologists (including my local Dr) sometimes do not seem to keep up with MAC or just do not treat many patients with the disease. It sounds like you are fortunate with your lack of symptoms. I would not hurry into antibiotic treatment and suggest that you review posts on this site as often the antibiotics have a negative side effect and sometimes do not kill off the MAC.
Oh…including a good snippet on NAC.
"N-acetyl-cysteine (NAC) is included in the World Health Organization’s list of essential medicines; a list that details the most relevant medications needed for a basic health system [1]. Acetyl-cysteine is a derivative of cysteine in which an acetyl group is attached to nitrogen. Due to its disulfide reducing activity, NAC is used as a mucolytic agent to promote expectoration [2]. NAC is commonly prescribed as an adjunct therapy in patients with a wide range of respiratory diseases characterized by formation of thick mucus, such as cystic fibrosis [2–4]. At high doses, NAC results in significantly improved small airway function and decreased exacerbation frequency in patients with stable chronic obstructive pulmonary disease (COPD) [3, 4]. NAC’s mucolytic activity is also the basis of its use in liquefying sputum samples for the microscopic detection of acid-fast bacilli (AFB) in suspected pulmonary tuberculosis (TB) patients [5]. Furthermore, in both experimental animal models and clinical studies, NAC displays a protective effect on acute liver injury induced by anti-TB drugs in acetaminophen-dependent or independent conditions [6–11]. In patients with type 2 diabetes, NAC holds promise in primary prevention of cardiovascular complications and systemic inflammation [12–14]."

This excerpt is from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5084440/ It is entitled N-acetyl-cysteine exhibits potent anti-mycobacterial activity in addition to its know anti-oxidative functions. I personally take NAC 600 mg 2x a day. It is over the counter.
Take care.
Kate alleycatkate

Jump to this post

Hi Kate. Thanks so much for all the information. I am very happy that you did not take the antibiotics. I really think that overall they do more harm than good. I really like my pulmonologist but he referred me to a Infectious Disease Dr that I am not comfortable with. That’s why I decided to just do whatever I can do on my own until I move to Phoenix and get set up with new doctors. I would love to go to Mayo but not sure if they will take my insurance. I’ve also heard great things about The Jewish hospital in Colorado. They specialize in NTM. Taking NAC sounds like the way to go. Happy to hear that you can buy it over the counter! I know I can get a nebulizer from Amazon. Can I also get saline without a RX? I will see my pulmonologist soon and want to know what to ask him for.
I really appreciate your response. Thanks so much.

REPLY
@karissy

Hi I was diagnosed with MAI and bronchietasis last August. I really have no symptoms like coughing or feeling tired. My pulmonologist said she would want to start treatment but she wanted me to see an ID doctor and have him decide. When I saw him he said he would not put me on the meds because I had no symptoms. He said exercise and airway clearance is the most important thing I could do. Then he would do. CT scan every six months. Sometimes you can clear this by doing these things. Right away I started walking 5 miles every morning 7 days a week and clearing my airways with my vest . I do that twice a day each time 20 minutes. So far I feel great with no effects at all. I feel so good that I have to remind myself that I have it. I even had another CT in February where everything remained stable.This has so far worked for me. I do not want to take the antibiotic treatment if I don’t have too. I will push myself to continue what I am doing. I strongly believe this has made all the difference in how I feel.

Jump to this post

So happy for you. Sounds like the current treatment is working for you!! Hope it continues. Yes a Dr that is knowledgeable in MAC is so important. Seems like most Drs put you on the big 3 as that is the standard protocol and they don’t give you alternatives. They have no idea how terrible the patients feel. Keep up the good work.

REPLY
@ljfoo

I was diagnosed with Bronchiectasis and MAC in Feb 2020. In my readings, I found that one can get rid of MAC through regular airway clearance. Because I was asymptomatic, my pulmonologist said he'd take the "watchful waiting" approach. To avoid the Big Three, I did airway clearance for a year and a half – nebulizing, aerobika, percussion clapping three times a day along with daily exercise of at least 30 minutes each. I did acupuncture and herbal medicine also. But alas, my sputum samples kept coming back positive for MAC. When I started having fatigue and weight loss (lose 10% of my body weight) I gave up and in August 2021 I went on the Big 3. Fortunately, the side effects are mild. My last two sputum samples have come back negative and I'm waiting for the third. If you can, send you next sputum sample to National Jewish Health and ask them to do a colony count. If your colony count is low enough, then NJH doctors would say you don't need to be on the Big 3.
lora jo

Jump to this post

Thanks for the info. Sorry to hear the alternative route did not work but happy to hear you tolerated the meds. I wish you the best and continued negative sputum samples. I am so thankful for this group. It’s good to be able to talk to others with this disease that most people(and many Drs) have no clue about!

REPLY
Please sign in or register to post a reply.