1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal "file cabinet" on MAC/MAI!  Go to it!

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

isabellad | @isabellad | Oct 22, 2023
In reply to @sueinmn "@isabellad & @bbeers The decision on whether to take the antibiotics is a very difficult one...." + (show)
@sueinmn

@isabellad & @bbeers The decision on whether to take the antibiotics is a very difficult one. Especially if we don't "feel really sick" - just coughing, or tired. Even harder to decide as we get a little older, and our bodies are more sensitive to medications.

But remember, "treatment" isn't only about the drugs. There is a lot you can do to help your body fight the infection without them - daily airway clearance, 7% saline nebs, good diet and exercise.

Here is a great video from NJH about how the experts make the decision to treat now or to wait and watch. They are talking specifically about hard to treat cases, but their explanation is very good. It's a little long, with a lot of numbers, but the bottom line is that there are choices.


Watching it and making a few notes might give you a great starting point for talking with your doctors. Don't be surprised if you get shrugs from your primary docs - this infection is uncommon enough that even a lot of pulmonologists only see a few cases in the course of their careers. That is why specialty centers like Mayo, NJH, and a few others are so important to our understanding.

Good luck with your decisions, whatever they may be. The group is always here to answer questions and give encouragement.
Sue

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Dear Sue,
I am so grateful to have found this site. I so appreciate all the encouraging remarks from members of this group. I have always been relatively healthy; and have never had any symptoms of Bronchiectasis in the past. So this MAC diagnosis came as a surprise. I exercise regularly and eat a balanced diet.
Doctor has me on 3% saline. Should I request 7%? I have read that it can be irritating to the lungs.

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 22, 2023
In reply to @isabellad "Dear Sue, I am so grateful to have found this site. I so appreciate all the..." + (show)
@isabellad

Dear Sue,
I am so grateful to have found this site. I so appreciate all the encouraging remarks from members of this group. I have always been relatively healthy; and have never had any symptoms of Bronchiectasis in the past. So this MAC diagnosis came as a surprise. I exercise regularly and eat a balanced diet.
Doctor has me on 3% saline. Should I request 7%? I have read that it can be irritating to the lungs.

Jump to this post

If you want to avoid/delay antibiotic therapy the 7% is worth a try - it actually suppresses the growth of MAC. This group was very different when I joined 5 years ago, reinfection seemed much more common, and there was less stress on airway clearance and saline as an alternative.

Some clinicians now call airway clearance the first line of defense for those who are not severely ill with MAC, and who do not have cavities in their lungs. They take a wait and watch approach to see if that is enough to keep the infection level low enough to avois antibiotics.

It will be interesting to see what your docs have to say.
Sue

REPLY
cabbagetown | @cabbagetown | Oct 22, 2023
In reply to @sueinmn "@isabellad & @bbeers The decision on whether to take the antibiotics is a very difficult one...." + (show)
@sueinmn

@isabellad & @bbeers The decision on whether to take the antibiotics is a very difficult one. Especially if we don't "feel really sick" - just coughing, or tired. Even harder to decide as we get a little older, and our bodies are more sensitive to medications.

But remember, "treatment" isn't only about the drugs. There is a lot you can do to help your body fight the infection without them - daily airway clearance, 7% saline nebs, good diet and exercise.

Here is a great video from NJH about how the experts make the decision to treat now or to wait and watch. They are talking specifically about hard to treat cases, but their explanation is very good. It's a little long, with a lot of numbers, but the bottom line is that there are choices.


Watching it and making a few notes might give you a great starting point for talking with your doctors. Don't be surprised if you get shrugs from your primary docs - this infection is uncommon enough that even a lot of pulmonologists only see a few cases in the course of their careers. That is why specialty centers like Mayo, NJH, and a few others are so important to our understanding.

Good luck with your decisions, whatever they may be. The group is always here to answer questions and give encouragement.
Sue

Jump to this post

Sue, I can’t tell you how much I appreciated the video. It has given me heap and heaps of NEW information. I am 66, female, and had chronic bouts of bronchitis throughout the pandemic. apparently now my lungs look like the Mississippi delta. I had a bronchoscopy a few days ago and awaiting with trepidation as to what little stowaways I am housing. I’m up in Toronto and under an impressive Bronchiectasis/CF team at St Michael’s Hospital. I’ll update the forum with the results and prognosis, I value everyone’s opinion here.

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 22, 2023
In reply to @cabbagetown "Sue, I can’t tell you how much I appreciated the video. It has given me heap..." + (show)
@cabbagetown

Sue, I can’t tell you how much I appreciated the video. It has given me heap and heaps of NEW information. I am 66, female, and had chronic bouts of bronchitis throughout the pandemic. apparently now my lungs look like the Mississippi delta. I had a bronchoscopy a few days ago and awaiting with trepidation as to what little stowaways I am housing. I’m up in Toronto and under an impressive Bronchiectasis/CF team at St Michael’s Hospital. I’ll update the forum with the results and prognosis, I value everyone’s opinion here.

Jump to this post

Welcome to Mayo Connect, and thank you for sharing a bit of your story with us. It is always helpful to hear from others on our (unwelcome) journey.
I'll be very interested to hear of your experience with the team there, I have heard it is an excellent hospital.
Sue

REPLY
bbeers | @bbeers | Oct 23, 2023
In reply to @sueinmn "@isabellad & @bbeers The decision on whether to take the antibiotics is a very difficult one...." + (show)
@sueinmn

@isabellad & @bbeers The decision on whether to take the antibiotics is a very difficult one. Especially if we don't "feel really sick" - just coughing, or tired. Even harder to decide as we get a little older, and our bodies are more sensitive to medications.

But remember, "treatment" isn't only about the drugs. There is a lot you can do to help your body fight the infection without them - daily airway clearance, 7% saline nebs, good diet and exercise.

Here is a great video from NJH about how the experts make the decision to treat now or to wait and watch. They are talking specifically about hard to treat cases, but their explanation is very good. It's a little long, with a lot of numbers, but the bottom line is that there are choices.


Watching it and making a few notes might give you a great starting point for talking with your doctors. Don't be surprised if you get shrugs from your primary docs - this infection is uncommon enough that even a lot of pulmonologists only see a few cases in the course of their careers. That is why specialty centers like Mayo, NJH, and a few others are so important to our understanding.

Good luck with your decisions, whatever they may be. The group is always here to answer questions and give encouragement.
Sue

Jump to this post

Thank you Sue. I had a great conversation with my primary Dr. He thinks I should start the meds, but agreed with me that I should introduce them gradually, say two weeks apart. That way I will be able to determine which one is making me sick if any. I am getting the Prevnar 20 tomorrow and will be getting RSV soon. I had the flu in August, but he still thinks I should get the flu shot. I am also going to Infectious Disease Dr. just for a second opinion and to share some insight into this disease etc.

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 23, 2023
In reply to @bbeers "Thank you Sue. I had a great conversation with my primary Dr. He thinks I should..." + (show)
@bbeers

Thank you Sue. I had a great conversation with my primary Dr. He thinks I should start the meds, but agreed with me that I should introduce them gradually, say two weeks apart. That way I will be able to determine which one is making me sick if any. I am getting the Prevnar 20 tomorrow and will be getting RSV soon. I had the flu in August, but he still thinks I should get the flu shot. I am also going to Infectious Disease Dr. just for a second opinion and to share some insight into this disease etc.

Jump to this post

Thanks for sharing - more facts are better when making a decision like this!
Do you know the status of your lungs as far as nodules or cavities?
Sue

REPLY
bbeers | @bbeers | Oct 23, 2023

Hi, yes it is nodular. Right now I have no symptoms other than having pneumonia, shingles, the flu and covid since last June. Thank you

REPLY
1 reply
columbine | @columbine | Oct 23, 2023
In reply to @bbeers "Thank you for responding. I had TB as a kid, but was strong enough to fight..." + (show)
@bbeers

Thank you for responding. I had TB as a kid, but was strong enough to fight it off however if left a scar on my lung. The Dr. said that's why I got MAC. I'm still trying to decide if I want to go on the Big 3 Meds. Going to discuss it with my family Dr. on Monday.

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May your doctor be of help with your decision. I am finding it very difficult to decide.
I would really appreciate any insights. Healing thoughts sent your way.

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 23, 2023
In reply to @bbeers "Hi, yes it is nodular. Right now I have no symptoms other than having pneumonia, shingles,..." + (show)
@bbeers

Hi, yes it is nodular. Right now I have no symptoms other than having pneumonia, shingles, the flu and covid since last June. Thank you

Jump to this post

Oh my, that's a lot of infections in a short time. So your lungs (and the rest of your body) are still in recovery from 3 serious illnesses. Maybe a wait and watch approach, while you work on strengthening your body and rebuilding resources, would be a possibility.
Sue

REPLY
1 reply
bbeers | @bbeers | Oct 23, 2023
In reply to @sueinmn "Oh my, that's a lot of infections in a short time. So your lungs (and the..." + (show)
@sueinmn

Oh my, that's a lot of infections in a short time. So your lungs (and the rest of your body) are still in recovery from 3 serious illnesses. Maybe a wait and watch approach, while you work on strengthening your body and rebuilding resources, would be a possibility.
Sue

Jump to this post

Thank you Sue. I will ask the Pulmonary Dr. about that.

REPLY
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