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.

Nancy C | @nac1 | Aug 16 10:50am
In reply to @lindabourassai "I have MAC which was diagnosed in 2016. I am unable to tolerate the big 3..." + (show)
@lindabourassai

I have MAC which was diagnosed in 2016. I am unable to tolerate the big 3 or Arykace as they cause me to be bedridden. I went to National Jewish Hospital in Denver where they did all of the tests possible but did not find anything useful. Since I cant tolerate the meds the only treatment they suggested that I do was To nebulize with 7% salt. Has anyone else had the same diagnosis and treatment?

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I have been nebulizing for two years. No drugs. Also
Eat well and exercise. Very little sputum. Coughing spells every now and then. So far so good. Good luck.

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Nancy C | @nac1 | Aug 16 10:52am
In reply to @scratssun "Yes coughing no longer a problem--gone thank goodness 😊. I did not have a sputum issue..." + (show)
@scratssun

Yes coughing no longer a problem--gone thank goodness 😊. I did not have a sputum issue so I'll have a broncoscopy to determine results in December.

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Sounds like you are making progress! With this disease, that’s about we can hope for. I think the meds would be very hard for me.

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avalosc3211 | @avalosc3211 | Aug 19 10:23am
In reply to @scratssun "Other than weight loss, I have tolerated the big 3 with no side effects since December..." + (show)
@scratssun

Other than weight loss, I have tolerated the big 3 with no side effects since December 2023. I, too, was apprehensive but am very satisfied that I chose to take the meds.

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Hi Kate,
I was diagnosed 1 year ago with MAC. I am very interest in your form to take to appointments, I struggle with what to ask since this is all new to me. If you could share this with me I would be most appreciative. I would also be interested with what meds you are taking that are not making you ill. That is so good to hear. I have put off treatment from the horror stories I have heard about how sick the meds can make you feel. If you don't mind sharing, please email me. Thank you in advance for your time and help. Warm Regards. C

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 19 10:57am
In reply to @avalosc3211 "Hi Kate, I was diagnosed 1 year ago with MAC. I am very interest in your..." + (show)
@avalosc3211

Hi Kate,
I was diagnosed 1 year ago with MAC. I am very interest in your form to take to appointments, I struggle with what to ask since this is all new to me. If you could share this with me I would be most appreciative. I would also be interested with what meds you are taking that are not making you ill. That is so good to hear. I have put off treatment from the horror stories I have heard about how sick the meds can make you feel. If you don't mind sharing, please email me. Thank you in advance for your time and help. Warm Regards. C

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Welcome to Mayo Connect, and yo our very helpful MAC & Bronchiectasis support group. We prefer to work together on this site, sharing our stories with the group, because there are about 1000 active members right here, ready to help. When we limit ourselves to emailing with one person, we only get one perspective. We respect your privacy, so you can be as anonymous as you want.
It makes me very sad when people talk about the "horror stories" about medication for treating MAC, and the fear they feel. Here on Connect, we share our journeys and talk about how to manage the antibiotic treatment regimen, which can be difficult, but also manageable. In addition, there are non-antibiotic ways to manage, and sometimes even suppress, the MAC infection without antibiotics.

When were you diagnosed, and where, if I might ask, are you reading what you call horror stories?

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Barb Bauer | @barbbauer | Aug 21 11:48am

In 2014, I was diagnosed with Asthma/COPD and bronchiectasis. I got sick the winter of 2016-2017 in Arizona. When my Dr did tests (sputum sample, CT scan, MRI)....... he told me I got Psuedomonas & Mycobacterial Avium Complex. Since then I've been in the hospital on 2 different IV antibiotics for a duration of 2 weeks, for 13 different times for the flareup of pseudomonas.....Just recently March and May of this year. I try to expel the mucus two or three times a day with saline nebulizers and aerobika that I blow into.) I'm on Levabuterol & budesonite nebulizers 6 times a day and some medication too keep the Pseudomonis from flaring up so often.
I've been on the different antibiotics (arythomyicin, ethambutol, rifabutin, bactrim) for the MAC for more than a year. The antibiotics never helped the MAC and the side effects made me sick. When I started taking the antibiotics I was nauseous, dizzy, fatigued, unsteady, would fall, my hand would shake, just generally didn't feel well at all. I had to stop one within three months because it caused my liver numbers to drop. I had to take IV iron for several weeks to get it back to normal.....another antibiotic I had to stop caused my eye became blurry, Eye Dr said my macula had split.....(eye is still blurry).
The next antibiotics they suggested had worse side effects. So I decided not to take anything and to let the MAC
(that is suppose to be slow growing) continue without any antibiotics.
I'm just wondering if anybody out there (1. has had better luck with different antibiotics) (2. has stopped all antibiotics like I did and how long has it been) (3. and how long any patients has had MAC and still alive)....
(4.and what's the longest they'd had MAC and still doing considerably well)?
The Drs at Mayo in Phoenix Arizona and at Sanford, in South Dakota had the same diagnosis and treatments.
This has taken over my life. I can't do alot of the things I used to do...or go out much because of the coughing?
I'm struggling and any suggestions would be helpful and greatly appreciated.

REPLY
3 replies
irenea8 | @irenea8 | Aug 22 7:22am
In reply to @barbbauer "In 2014, I was diagnosed with Asthma/COPD and bronchiectasis. I got sick the winter of 2016-2017..." + (show)
@barbbauer

In 2014, I was diagnosed with Asthma/COPD and bronchiectasis. I got sick the winter of 2016-2017 in Arizona. When my Dr did tests (sputum sample, CT scan, MRI)....... he told me I got Psuedomonas & Mycobacterial Avium Complex. Since then I've been in the hospital on 2 different IV antibiotics for a duration of 2 weeks, for 13 different times for the flareup of pseudomonas.....Just recently March and May of this year. I try to expel the mucus two or three times a day with saline nebulizers and aerobika that I blow into.) I'm on Levabuterol & budesonite nebulizers 6 times a day and some medication too keep the Pseudomonis from flaring up so often.
I've been on the different antibiotics (arythomyicin, ethambutol, rifabutin, bactrim) for the MAC for more than a year. The antibiotics never helped the MAC and the side effects made me sick. When I started taking the antibiotics I was nauseous, dizzy, fatigued, unsteady, would fall, my hand would shake, just generally didn't feel well at all. I had to stop one within three months because it caused my liver numbers to drop. I had to take IV iron for several weeks to get it back to normal.....another antibiotic I had to stop caused my eye became blurry, Eye Dr said my macula had split.....(eye is still blurry).
The next antibiotics they suggested had worse side effects. So I decided not to take anything and to let the MAC
(that is suppose to be slow growing) continue without any antibiotics.
I'm just wondering if anybody out there (1. has had better luck with different antibiotics) (2. has stopped all antibiotics like I did and how long has it been) (3. and how long any patients has had MAC and still alive)....
(4.and what's the longest they'd had MAC and still doing considerably well)?
The Drs at Mayo in Phoenix Arizona and at Sanford, in South Dakota had the same diagnosis and treatments.
This has taken over my life. I can't do alot of the things I used to do...or go out much because of the coughing?
I'm struggling and any suggestions would be helpful and greatly appreciated.

Jump to this post

You mentioned taking a medication to keep the Pseudo from flaring up so often. What would that medication be? What IV antibiotics do they put you on during those 13 times? Are you able to get up much mucus when you nebulize? If not have you tried using the Aerobika while in different postures to assist drainage?

REPLY
Rick | @rstel7272 | Aug 22 7:25am

I have been 6+ years on antibiotics. I am lucky as I tolerate them all well with the exception of amikacin and arikayce that sent me to the er. I made major lifestyle changes and becoming more active everyday

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genabryant | @genabryant | Aug 23 5:41am

I am an asthma educator& pulmonary disease specialist. If you are still positive for pseudomonas, ask for inhaled tobramycin. You take it like a breathing treatment. 28 days on, 28 days off. Ask for an airway clearance vest. Philips/Respirtech is the company that makes them. Also, with MAC, you have to have super good infection control, cleaning the Aerobika daily as well as any breathing treatment circuits you are using. You can try baby bottle sterilizers. Hope this helps.

REPLY
blm1007blm1007 | @blm1007blm1007 | Aug 24 9:16am
In reply to @barbbauer "In 2014, I was diagnosed with Asthma/COPD and bronchiectasis. I got sick the winter of 2016-2017..." + (show)
@barbbauer

In 2014, I was diagnosed with Asthma/COPD and bronchiectasis. I got sick the winter of 2016-2017 in Arizona. When my Dr did tests (sputum sample, CT scan, MRI)....... he told me I got Psuedomonas & Mycobacterial Avium Complex. Since then I've been in the hospital on 2 different IV antibiotics for a duration of 2 weeks, for 13 different times for the flareup of pseudomonas.....Just recently March and May of this year. I try to expel the mucus two or three times a day with saline nebulizers and aerobika that I blow into.) I'm on Levabuterol & budesonite nebulizers 6 times a day and some medication too keep the Pseudomonis from flaring up so often.
I've been on the different antibiotics (arythomyicin, ethambutol, rifabutin, bactrim) for the MAC for more than a year. The antibiotics never helped the MAC and the side effects made me sick. When I started taking the antibiotics I was nauseous, dizzy, fatigued, unsteady, would fall, my hand would shake, just generally didn't feel well at all. I had to stop one within three months because it caused my liver numbers to drop. I had to take IV iron for several weeks to get it back to normal.....another antibiotic I had to stop caused my eye became blurry, Eye Dr said my macula had split.....(eye is still blurry).
The next antibiotics they suggested had worse side effects. So I decided not to take anything and to let the MAC
(that is suppose to be slow growing) continue without any antibiotics.
I'm just wondering if anybody out there (1. has had better luck with different antibiotics) (2. has stopped all antibiotics like I did and how long has it been) (3. and how long any patients has had MAC and still alive)....
(4.and what's the longest they'd had MAC and still doing considerably well)?
The Drs at Mayo in Phoenix Arizona and at Sanford, in South Dakota had the same diagnosis and treatments.
This has taken over my life. I can't do alot of the things I used to do...or go out much because of the coughing?
I'm struggling and any suggestions would be helpful and greatly appreciated.

Jump to this post

So sorry to hear how you have struggled for so long.
One of the things that I heard Dr. Daily say about repeated infections is the fact that we may not have done enough in our own environment to protect ourselves and we keep going back to the same environment without making changes. Changes such as temperature of hot water tank and methods to reduce bacteria in it, cleaning or changing out our shower heads to not allow bacteria build up and other practices... etc. etc. etc. With my having researched and read on this site what would be best to do in our home enviornment and all environments we find ourselves in.... I hope I have done enough to help myself. I also hope my eating healthy and taking supplements is helping. I have a C Scan in October and will know then. Wishing for you and hoping you find your way to better outcomes....it certainly isn't an easy task for us with compromised lungs, and more than likely, other health problems added in. Barbara

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 24 11:13am
In reply to @barbbauer "In 2014, I was diagnosed with Asthma/COPD and bronchiectasis. I got sick the winter of 2016-2017..." + (show)
@barbbauer

In 2014, I was diagnosed with Asthma/COPD and bronchiectasis. I got sick the winter of 2016-2017 in Arizona. When my Dr did tests (sputum sample, CT scan, MRI)....... he told me I got Psuedomonas & Mycobacterial Avium Complex. Since then I've been in the hospital on 2 different IV antibiotics for a duration of 2 weeks, for 13 different times for the flareup of pseudomonas.....Just recently March and May of this year. I try to expel the mucus two or three times a day with saline nebulizers and aerobika that I blow into.) I'm on Levabuterol & budesonite nebulizers 6 times a day and some medication too keep the Pseudomonis from flaring up so often.
I've been on the different antibiotics (arythomyicin, ethambutol, rifabutin, bactrim) for the MAC for more than a year. The antibiotics never helped the MAC and the side effects made me sick. When I started taking the antibiotics I was nauseous, dizzy, fatigued, unsteady, would fall, my hand would shake, just generally didn't feel well at all. I had to stop one within three months because it caused my liver numbers to drop. I had to take IV iron for several weeks to get it back to normal.....another antibiotic I had to stop caused my eye became blurry, Eye Dr said my macula had split.....(eye is still blurry).
The next antibiotics they suggested had worse side effects. So I decided not to take anything and to let the MAC
(that is suppose to be slow growing) continue without any antibiotics.
I'm just wondering if anybody out there (1. has had better luck with different antibiotics) (2. has stopped all antibiotics like I did and how long has it been) (3. and how long any patients has had MAC and still alive)....
(4.and what's the longest they'd had MAC and still doing considerably well)?
The Drs at Mayo in Phoenix Arizona and at Sanford, in South Dakota had the same diagnosis and treatments.
This has taken over my life. I can't do alot of the things I used to do...or go out much because of the coughing?
I'm struggling and any suggestions would be helpful and greatly appreciated.

Jump to this post

Barb, when you say you are coughing a lot, we all understand - been there ourselves. Do the doctors have you doing regular airway clearance, using saline in a nebulizer to loosen the mucus, then airway clearance techniques to loosen it?
This has helped keep a lot of people in this group healthy enough to avoid antibiotic therapy, and reduced some of the constant coughing.
Here is an excellent webinar on airway clearance by Dr Pamela McShane, an expert in treating Bronchiectasis and MAC:


Is is a little long, but well worth watching. She stresses trying a variety of clearance techniques until you find what works for you.

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