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.

auntnanny | @auntnanny | Jul 11, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
@auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

Jump to this post

Just saying too, pseudomonas has shown only once or twice in the analyses from sputum and cipro was the drug of choice that seemed to work at that time. May not do it the next time, but....... it stopped my coughing after about 2 weeks.

REPLY
auntnanny | @auntnanny | Jul 11, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
@auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

Jump to this post

I said earlier, the last four sputum tests -- over about a 5-month period have all come back negative. Surely, if there was MAC or pseudomonas, it would have shown up in the testing. I was able to give them lots of terrible green phlegm to test.

REPLY
ling123 | @ling123 | Jul 11, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
@auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

Jump to this post

@auntnanny, my pulmonary doctor has told me the same thing that I would die WITH bronchiectasis but most likely would not die FROM it. So the concern is not with bronchiectasis per se. It is whether one has underlying illness(es) that can be exacerbated because of the existence of brochiectasis. So we all need to do due diligence as Katherine has suggested with clearing our lungs of excessive phlegm as much as we possibly can to eliminate or at least reduce the risk of infections in our bronchi. To me, it's like having a mole growing on my body. I have seen moles turning cancerous on others. Should I be twiddling my thumbs worrying about my mole will someday become cancerous? Absolutely not. Of course I will do my due diligence and go have it looked at immediately if its shape and color change. Before that happens, I'm living as happy and normal a life as I possibly can. OK. It is not a perfect analogy. But the philosophy is the same.

REPLY
auntnanny | @auntnanny | Jul 11, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
@auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

Jump to this post

I use my nebulizer once/twice daily with albuterol followed by saline. Mayo's told me this is very important and that oftentimes people go home and no longer continue the regimen. It's the only preventive I have been told to do. If I start coughing hard, I take a sputum sample in for testing. Perhaps I'm missing more of what I could do, but if so, I don't know what. Help me out if I should be doing more.

REPLY
Katherine, Alumni Mentor | @katemn | Jul 11, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
@auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

Jump to this post

@auntnanny .. Jan, I learned .. NOT from my doctors .. but from our wonderful Connect about a GREAT Lung Clearance Device called an Aerobika .. it has been an absolute game changer for me! I use it both AFTER my inhaler .. AND then again after my saline .. I have been amazed how much more sputum I get up using the Aerobika than I do without. I DEFINITELY would purchase it and start using it! Hugs! Katherine

From my File Cabinet:
AEROBIKA . From a Member : I highly recommend it. I love mine. I have two. They vibrate well to loosen the stuff and they are so much easier than an Acapella to clean. (I use a bit of dish soap. Suds it up .. agitate .. hold the parts and shake them very thoroughly through the sudsy water. 2. Let the parts soak for 10 to 15 minutes. Then several times fill the measuring cup with very warm rinse water .. again agitate the parts thoroughly to make sure they are thoroughly clean of the antibacterial dish soap. ) I have had mine for at least 2 years. READ AND FOLLOW THE CLEANING DIRECTIONS THAT COME WITH IT!!
Aerobika-Medical Supply ordered 2/25/17 $90.00

Read the reviews and how to use at
Aerobika Device Shows Promise in Treating Bronchiectasis, COPD Exacerbations http://bit.ly/2tyV75e
Member notes on AIRWAY CLEARANCE DEVICES : AEROBIKA .. ABSOLUTE BEST CLEARANCE DEVICE!
• http://www.aerobika-therapy.com/order-today/
• https://www.monaghanmed.com/Aerobika
AEROBIKA PURCHASE:
• https://www.amazon.com/AEROBIKA-Oscillating-Expiratory-Effective-Clearance/dp/B00O96GQUO
• https://www.nationaljewish.org/treatment-programs/medications/lung-diseases/treatments/using-the-aerobika
• http://www.aerobika-therapy.com/order-today/
• https://www.youtube.com/watch?v=iy2oYadhF9Q
• https://www.youtube.com/watch?v=fqZUt3cAb0g
https://www.trudellmed.com/products/aerobika
• https://www.nationaljewish.org/treatment-programs/medications/lung-diseases/treatments/using-the-aerobika

REPLY
Katherine, Alumni Mentor | @katemn | Jul 11, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
@auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

Jump to this post

@ling123, Ling, REALLY like that analogy! "I will do my due diligence and go have it looked at immediately if its shape and color change. Before that happens, I’m living as happy and normal a life as I possibly can. " Your FOCUS is NOT on the mole .. BUT you are NOT ignoring it either! Good job! Thank you! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jul 11, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
@auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

Jump to this post

@auntnanny, Jan, you've said .. "Is there a way to learn which others work in the same group."

Jan, "I'd like you to re read my "Posted by @katemn, 3 hours ago" .. give it some thought. I GAVE you the way to find out where Dr. Moua works .. I gave you a phone number you can call .. ASK if Dr Moua is a member of Dr. Aksamit's MAI/MAC Pulmonary team? If NOT as what team he DOES work with. YOU need to do you OWN "Due Diligence" .. our Connect can only guide you .. only YOU can make your own best decisions for YOU based on what YOU feel is best for YOU.

When you say "That said……. it’s still a very scary feeling when I’m desperately coughing. I did it for years before being diagnosed with anything more than asthma (which I knew was wrong)…… but I don’t seem to have any patience these days when the coughing fires up again. I wonder if I should expect longer bouts between flares. I have no answers as to whether others are able to be free of the problem for months — or just weeks as I am." .. Jan, THAT is why I suggested you call that phone number .. GET a second opinion .. ARMED with ALL your questions so that you can have peace of mind. The peace of mind you do NOT have now. Sending you a hug in this tough time. Katherine

REPLY
auntnanny | @auntnanny | Jul 11, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
@auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

Jump to this post

Thank you --- Mayo's gave me the Aerobika when I was there. I've never had difficulty breathing and I can easily bring up the phlegm so........ I really haven't done much with it. Perhaps I should. I played lead sax in a dance band when I was young (was a music teacher for 27 years)....... and I got out my sax and thought I would play it again just to keep my lung strength. Dr. Moua says that's a great idea and that they do recommend wind instruments for people who have them. I thought I probably wouldn't be able to play the horn again but I don't have any trouble doing that. Thanks for your thoughts on this....... Jan

REPLY
Katherine, Alumni Mentor | @katemn | Jul 11, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
@auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

Jump to this post

@auntnanny .. Jan, I ALSO bring up a lot of mucus. The purpose of the Aerobika .. if you read about it is to bring up the mucus from the LOWER portions of the lungs that is NOT as easily brought up. Give it some thought. I know I am now dealing with Pseudomonas with copious mucus .. but after using the Aerobika .. what it brings up is more "yucky" .. makes me believe it IS from my lower lungs! Hugs! Katherine

REPLY
auntnanny | @auntnanny | Jul 11, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
@auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

Jump to this post

You are so kind to use your time and energy to help others. Great compassion. Let me tell you a bit more which may or may not be important. When I went to Mayo's I asked for an appt with a gastroenterologist because my primary care doctor in Tulsa was insistent my cough was coming from reflux. I had seen to gastro guys in Tulsa -- did the 24-hour impedence and other tests -- nothing was conclusive that reflux was the problem. However, my doctor was insistent that he wanted me to have surgery and have the new magnetic ring put in the bottom of my esophagus (it supposedly opens when you swallow and then closes. It's new...... only one surgeon in Tulsa doing it and he had not done many. I was not comfortable and that's when I called Mayo's. I asked for gastro appt because I simply wanted a second opinion on this particular surgery and whether they felt it would be my answer. I had 3 gastro fellas when I got there and after looking at my records they said absolutely not reflux and they sent me for a lung scan. Went back in two hours and that department diagnosed bronchiectasis with no hesitation. Then...... they said they wanted me to see the pulmonologist they felt was their best and I had to wait about 6 weeks for the appt with Dr. Moua. He was the one they insisted I wait for. So...... that's why I have him. I knew nothing about any of them but he has been very kind and seems knowledgeable. I don't know how he rates in their organization but the gastro department is very high on him. As of right now, with only negative tests (although I can bring up lots of dark green, sticky, stringy globs when I'm coughing) it's hard to say I'm not doing well. I have flares every few weeks and when I do, the coughing is hard enough that I can wet, vomit, or most anything. It feels like it comes from very deep but maybe I don't know. Breathing is not a problem -- is it for you? I pray it never becomes one. That's my main worry. I would hate to call and say I'm ill and that I need help with negative reports and antibiotics that seem to take away the symptoms for a few weeks. Dr. Moua said he had conferred with colleagues several times and that they do have a plan in place if I develop Mac. It's something rather new that they want me to test -- if it happens. I don't know if you want all this info, but you are so very kind and I decided to share a bit more about me. Thanks again for caring.......... Jan P.S. My doctor in Tulsa is 2 hours from here -- has a tremendous reputation -- fairly young -- he's still insistent I did not have bronchiectasis initially but that reflux has caused it. He probably has an ego problem?????

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