1. < MAC & Bronchiectasis

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.

ReRE | @jcwest211 | May 6, 2022
In reply to @sueinmn "Here's the dreaded answer "It depends." If your doctor orders the sputum culture, he can write..." + (show)
@sueinmn

Here's the dreaded answer "It depends."

If your doctor orders the sputum culture, he can write specific orders to send it to NJH, where they can not only do the AFB (fast) test for NTM/MAC, but also the culture, colony count and sensitivity testing. Few local labs are set up to handle this with the expertise of NJH, so it is a legitimate order. NJH then bills your insurance company, or if your doctor or clinic has a standing arrangement with them, it is billed through their regular lab billing process, and coded as an "outside service."

From there, it is an insurance issue, and depends on your carrier and policy. I have Medicare as my primary coverage and BCBS through my previous employer to take up the slack. My bill is 100% covered. My daughter's employer is self-insured, so she pays the $20 or $25 lab copay.

So if you want it done through NJH, step 1 is to see the doc, discuss & get the order. Step 2 is to check your insurance coverage or discuss the testing/billing process with your clinic. Step 3 is to submit the sample as directed by the doctor either to their lab to be shipped, or direct to NJH.

Have you been having regular cultures done?

Jump to this post

Thank you so much. I will ask my ID for the prescription. I had a negative culture last August, a positive one in January and I am waiting on another one I had in early April. the early results are indicating negative, but it has only been 4 weeks. I have been on the big 3 antibiotics for just about a year. I would like very much to stop taking them.

REPLY
nlondon9 | @nlondon9 | May 9, 2022

hello...yes I'm with you. CT scan shows MAC is spreading but overall I feel fine. Spent Mother's Day gardening, full of energy. I am working with a homeopath and acupuncturist, exercising, taking medicinal mushrooms, vitamins, all to try to avoid the antibiotic treatment. I have not yet tried a saline nebulizer. Wishing you all the best. Nancy

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | May 9, 2022
In reply to @nlondon9 "hello...yes I'm with you. CT scan shows MAC is spreading but overall I feel fine. Spent..." + (show)
@nlondon9

hello...yes I'm with you. CT scan shows MAC is spreading but overall I feel fine. Spent Mother's Day gardening, full of energy. I am working with a homeopath and acupuncturist, exercising, taking medicinal mushrooms, vitamins, all to try to avoid the antibiotic treatment. I have not yet tried a saline nebulizer. Wishing you all the best. Nancy

Jump to this post

Hi Nancy, I see that you a new to Mayo Connect. Have you done much reading about antibiotic therapy here or on other sites?

How long ago were you diagnosed with MAC, and when you say it is spreading, what are the "findings" from the radiologist or pulmonologist?

I too am an avid gardener, and have made some adaptations to my gardening to protect my lungs from the MAC that lives in the soil. I'd like to pretend that I am invincible, but I also want to live a long time - I still have a lot I want to do!

I look forward to a great conversation with you.
Sue

REPLY
1 reply
lutherjr | @lutherjr | May 12, 2022
In reply to @thumperguy "Laura, I applaud your reluctance to start the poisonous trio when there isn’t much, if anything,..." + (show)
@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

I have just started with nebulizing 7% saline solution. How long do you nebulize? I am up to 7 minutes.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | May 13, 2022

Here are a few helpful discussions related to the topics discussed in this discussion:
- Anyone have any nebulizer recommendations? https://connect.mayoclinic.org/discussion/nebulizer-recommendations/
- Starting MAC treatment with "big three" drugs: What to expect? https://connect.mayoclinic.org/discussion/starting-mac-drugs/
- 7% Saline Solution https://connect.mayoclinic.org/discussion/7-saline-solution/
- Percussion Vest and Nebulizer: Do you use both, one or the other? https://connect.mayoclinic.org/discussion/percussion-vestnebulizer/

See all discussions in the MAC & Bronchiectasis group: https://connect.mayoclinic.org/group/mac-bronchiectasis/

REPLY
ReRE | @jcwest211 | May 14, 2022

I have both bronchiectasis and MAC lung. My pulmonologist recently prescribed 3% Nebulized sodium chloride.....not the 7% everyone seems to use. Since I started using it, I have developed coughing spells that are quite awful more than I ever did before. I also have MAC lung and use the "big" 3 to treat it. Just wondering if anyone experiences coughing and bringing up a large amount of mucus an hour or two after nebulizing. Is this normal?

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | May 14, 2022
In reply to @jcwest211 "I have both bronchiectasis and MAC lung. My pulmonologist recently prescribed 3% Nebulized sodium chloride.....not the..." + (show)
@jcwest211

I have both bronchiectasis and MAC lung. My pulmonologist recently prescribed 3% Nebulized sodium chloride.....not the 7% everyone seems to use. Since I started using it, I have developed coughing spells that are quite awful more than I ever did before. I also have MAC lung and use the "big" 3 to treat it. Just wondering if anyone experiences coughing and bringing up a large amount of mucus an hour or two after nebulizing. Is this normal?

Jump to this post

It sure is normal for me. I was told the purpose of the saline is to bring up the mucus, which provides a nice, warm, dark, moist place for the MAC to grow. Keep the mucus moving and there is little opportunity for the germs to settle. The purpose of 7% vs 3% is that it is even more inhospitable to MAC.

Sue

REPLY
1 reply
ReRE | @jcwest211 | May 15, 2022
In reply to @sueinmn "It sure is normal for me. I was told the purpose of the saline is to..." + (show)
@sueinmn

It sure is normal for me. I was told the purpose of the saline is to bring up the mucus, which provides a nice, warm, dark, moist place for the MAC to grow. Keep the mucus moving and there is little opportunity for the germs to settle. The purpose of 7% vs 3% is that it is even more inhospitable to MAC.

Sue

Jump to this post

Thank you, Sue. For anyone interested, I ordered this portable nebulizer on Amazon and have used it once and it worked great. Much easier than using the nebulizer machine with the Aerobika. I am also continuing to use the Aerobika There is a warning that batteries will wear out after 4 to 6 full dose uses.
https://www.amazon.com/dp/B095RZDJJD?psc=1&ref=ppx_yo2ov_dt_b_product_details.

REPLY
myweb2learn | @myweb2learn | May 23, 2022

I recommend National Jewish Health. That is where I go. They really take everything into consideration and antibiotics are the last they recommend. Have your infectious desease doctor or pulminologist refer you to them. Make sure your insurance covers it.
I have had my bronchiectasis and mac for years but was referred to them just last year. Currently I am doing their recommended lung clearing and life style chnages since i also have GERD which might cause my infection. I go back next year for follow up. They are really good. You can do all necessary tests in one place. Amazing.

REPLY
blm1007blm1007 | @blm1007blm1007 | Dec 23, 2023
In reply to @sueinmn "Hi Nancy, I see that you a new to Mayo Connect. Have you done much reading..." + (show)
@sueinmn

Hi Nancy, I see that you a new to Mayo Connect. Have you done much reading about antibiotic therapy here or on other sites?

How long ago were you diagnosed with MAC, and when you say it is spreading, what are the "findings" from the radiologist or pulmonologist?

I too am an avid gardener, and have made some adaptations to my gardening to protect my lungs from the MAC that lives in the soil. I'd like to pretend that I am invincible, but I also want to live a long time - I still have a lot I want to do!

I look forward to a great conversation with you.
Sue

Jump to this post

Sue....Volunteer Mentor
I did the NJH battery of testing in October 2023 due to my needing more than the local pulmonologist's plan....of anti-biotics if I developed MAC. I knew of NJH since the 1990's due to my Mother's having had emphysema and my research at the time. It was too late for Mother. Yes the local pulmonologist told me to get the Acappella but no help directly, just a print out to read on how to do it. Yet all I read in other articles or the instructions that came with the device was to have your doctor set the setting etc. etc. with you. Received no help from him or his medical professionals in his office after two times of reaching out to them for help with it to be sure I understood how to do all. Nor did he teach me or tell me about Huff coughing. SAD what does not exist in the pulmonology departments of the local medical doctors office and health systems. Symptoms, looking back started several years ago and finally diagnosed in August of 2022 after all my visits that I kept arraanging with my primary doctor because I knew there was something dramatically wrong with me. Finally after seeing my continual weight loss and the amount of weight lost he did the C Scan and guess what... BE. He kindly held my hand as he told me the C Scan results. Of course I didn't fully understand all other than I had something seriously wrong. I work out in the yard, my passion. You mentioned that you do also work in the yard. What are the things you do to protect you from soil Mac...or for that matter shower/water Mac.?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.