1. < MAC & Bronchiectasis

Mac + lung cavity

Posted by bevmac @bevmac, Jun 24, 2020

my 3 centimetre cavity has healed in 16 months with the 3 antibiotics - both shocked and delighted. Preventative medicine doctor assisted my immune system cope - also recommended a vegan diet for last 9 months.

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

suzanne11 | @suzanne11 | Feb 20 12:42am
In reply to @sueinmn "HI Suzanne, You are in exactly the situation where none of us likes to be with..." + (show)
@sueinmn

HI Suzanne, You are in exactly the situation where none of us likes to be with this disease - getting worse and getting inconsistent guidance from your docs.

As for being afraid of the antibiotics, Have you read the comments in this discussion?
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/

There is definitely a time and a place for antibiotics. I will liken taking them to a cancer patient having surgery only, radiation, chemotherapy or a combination of the three. Some slow-growing or early stage cancers can be treated with one method only. Others require a more aggressive approach to knock them out. There are side effects to treating, and then there is the very real side effect of not treating - spreading cancer, maybe even death.

So it is with MAC/NTM. Sometimes airway clearance with airway meds and/or saline can knock the infection down or out. Sometimes it doesn't work, and the antibiotics need to be considered. Yes, there are side effects, but failing to treat when needed has really bad side effects too - potential loss of all or part of infected lungs, need for a lung transplant, or if the infection invades too far, even (VERY rarely) death. So it is a balancing act.

This discussion contains links to some excellent resources that discuss the stages of MAC/NTM and the protocols on when to treat and when to watch and wait.
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/

You have told us your doctors are not specific on how much to neb, but what have they recommended using in the nebulizer? And have they prescribed a daily routine of airway clearance for getting the mucus out? It is the lovely, warm, moist breeding ground for bacteria in our lungs.
Sue

Jump to this post

Thank you so much for your replay. ❤️
Based on my Mayo Doctor Just use the Nebulizer twice a day.

REPLY
Rick | @rstel7272 | Feb 20 9:19am
In reply to @suzanne11 "Hi Sue, My name is Suzanne. I am 55 years old. I was diagnosed with Mac..." + (show)
@suzanne11

Hi Sue,

My name is Suzanne. I am 55 years old. I was diagnosed with Mac Lung disease over a year ago. My doctors are not giving me antibiotics. They have suggested the nebulizer. One Dr. says to do it 2 times a day, the other doctor says few times a week. My condition is getting worse as I have non stop sputum. I am not sure what I should do. I am nerves about my condition, and afraid of the antibiotics side effects. 🙁

Jump to this post

Don't let Mac create cavitation. Cavitation has been my scourge for 5+ years

REPLY
1 reply
suzanne11 | @suzanne11 | Feb 21 1:06am
In reply to @rstel7272 "Don't let Mac create cavitation. Cavitation has been my scourge for 5+ years" + (show)
@rstel7272

Don't let Mac create cavitation. Cavitation has been my scourge for 5+ years

Jump to this post

Hi Ric,

How do I avoid that?

Doctors say the Mac is flowing in my lungs. I have had 2 cat scans. But the problem is I am very uncomfortable and I have a lots of sputum. I feel like I have infection all the time. And my life quality has changed. 🙁
I also have tow cats and I am sure my cats are not helping my situation. I love my cats but everyone is telling me I should give them up. I am so confused. I wonder if anyone else hear has cats or dogs?

Thank you,

Suzanne

REPLY
4 replies
tconz | @tconz | Feb 21 6:44am
In reply to @suzanne11 "Hi Ric, How do I avoid that? Doctors say the Mac is flowing in my lungs...." + (show)
@suzanne11

Hi Ric,

How do I avoid that?

Doctors say the Mac is flowing in my lungs. I have had 2 cat scans. But the problem is I am very uncomfortable and I have a lots of sputum. I feel like I have infection all the time. And my life quality has changed. 🙁
I also have tow cats and I am sure my cats are not helping my situation. I love my cats but everyone is telling me I should give them up. I am so confused. I wonder if anyone else hear has cats or dogs?

Thank you,

Suzanne

Jump to this post

I have dogs and I will NOT give them up. They are like family.

REPLY
Rick | @rstel7272 | Feb 21 9:09am
In reply to @suzanne11 "Hi Ric, How do I avoid that? Doctors say the Mac is flowing in my lungs...." + (show)
@suzanne11

Hi Ric,

How do I avoid that?

Doctors say the Mac is flowing in my lungs. I have had 2 cat scans. But the problem is I am very uncomfortable and I have a lots of sputum. I feel like I have infection all the time. And my life quality has changed. 🙁
I also have tow cats and I am sure my cats are not helping my situation. I love my cats but everyone is telling me I should give them up. I am so confused. I wonder if anyone else hear has cats or dogs?

Thank you,

Suzanne

Jump to this post

Untreated Mac can cause cavitation if left untreated. I am the poster boy for that, I ignored symptoms for several years. Treatment includes ACT's, antibiotics, PT and surgery. Getting the right pulminologist early is key! While I recently lost my GSD, she was by my side every step of the way. She developed DM the last 2 years, I got her a harness with a carrying handle and took care of her.

REPLY
thorne | @thorne | Feb 21 10:25am

When I was first diagnosed, I had a cavity and active MAC. I did the big three and tolerated them well and nebulized twice a day with saline. My cavity stayed the same but I now constantly test negative for MAC and my sputum decreased so much that I have started nebulizing only once a day. I have two dogs. Everything feels so overwhelming at first but you can gain control of your life again and you can live with a cavity, even though it isn't ideal. A good doctor familiar with this disease is important but this forum and the one that NTM runs have taught me as much as my doctor about how to manage this disease and maintain my health. So thank you to all of you and good luck! And don't give up your precious pets -- your mental health matters too.

REPLY
1 reply
suzanne11 | @suzanne11 | Feb 21 8:25pm
In reply to @thorne "When I was first diagnosed, I had a cavity and active MAC. I did the big..." + (show)
@thorne

When I was first diagnosed, I had a cavity and active MAC. I did the big three and tolerated them well and nebulized twice a day with saline. My cavity stayed the same but I now constantly test negative for MAC and my sputum decreased so much that I have started nebulizing only once a day. I have two dogs. Everything feels so overwhelming at first but you can gain control of your life again and you can live with a cavity, even though it isn't ideal. A good doctor familiar with this disease is important but this forum and the one that NTM runs have taught me as much as my doctor about how to manage this disease and maintain my health. So thank you to all of you and good luck! And don't give up your precious pets -- your mental health matters too.

Jump to this post

I don't know why my doctors are telling me not to take the big 3 if they will cause cavity. 🙁
The doctors are telling me my MAC is not that much!
But I have been getting lung infections once a month and my doctors put me on the antibiotics for a short time. I am so uncomfortable and embarrassed in front of friends and family because of non stop phloem.

One of my lung doctors also told me can't live with my cats. They are making my situation worse. I can't give them up. 😭😭😭

REPLY
2 replies
suzyqueue | @suzyqueue | Feb 22 7:21am
In reply to @suzanne11 "I don't know why my doctors are telling me not to take the big 3 if..." + (show)
@suzanne11

I don't know why my doctors are telling me not to take the big 3 if they will cause cavity. 🙁
The doctors are telling me my MAC is not that much!
But I have been getting lung infections once a month and my doctors put me on the antibiotics for a short time. I am so uncomfortable and embarrassed in front of friends and family because of non stop phloem.

One of my lung doctors also told me can't live with my cats. They are making my situation worse. I can't give them up. 😭😭😭

Jump to this post

I had a 10 cm cavity grown in my upper left lobe within 30 days of no treatment.
I would get another opinion from an infectious disease doctor and a different pulmonologist.
The one telling you that you don't need treatment for mac but telling you your cats are the problem doesn't make sense.

REPLY
dpc23 | @dpc23 | Feb 22 9:17am
In reply to @suzanne11 "Hi Ric, How do I avoid that? Doctors say the Mac is flowing in my lungs...." + (show)
@suzanne11

Hi Ric,

How do I avoid that?

Doctors say the Mac is flowing in my lungs. I have had 2 cat scans. But the problem is I am very uncomfortable and I have a lots of sputum. I feel like I have infection all the time. And my life quality has changed. 🙁
I also have tow cats and I am sure my cats are not helping my situation. I love my cats but everyone is telling me I should give them up. I am so confused. I wonder if anyone else hear has cats or dogs?

Thank you,

Suzanne

Jump to this post

After my diagnosis of MAC and NTM on 09/2023, I reluctantly removed my long-haired cat on 02/2024 due to constant congestion, dust from litter, and daily vacuuming. I also had our carpets professionally cleaned. I immediately noticed a difference in my breathing and sputum clearance.

REPLY
Rick | @rstel7272 | Feb 22 9:21am
In reply to @suzanne11 "I don't know why my doctors are telling me not to take the big 3 if..." + (show)
@suzanne11

I don't know why my doctors are telling me not to take the big 3 if they will cause cavity. 🙁
The doctors are telling me my MAC is not that much!
But I have been getting lung infections once a month and my doctors put me on the antibiotics for a short time. I am so uncomfortable and embarrassed in front of friends and family because of non stop phloem.

One of my lung doctors also told me can't live with my cats. They are making my situation worse. I can't give them up. 😭😭😭

Jump to this post

The big 3 does not cause a cavity. If you have Mac + cavitation, they might add Amikacin or Arikayce in addition. If Mac does not respond to the big 3, Arikayce may be added

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