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.

heathert | @heathert | Nov 26, 2016
In reply to @heathert "Hi all just read interesting article from sept 2016 re new antibiotics. There seems to be..." + (show)
@heathert

Hi all
just read interesting article from sept 2016 re new antibiotics. There seems to be alot going on in the antibiotic world, however MAC/MAI wasnt even mentioned, so I have written a comment at the bottom which has to be approved before its published, hopefully it will be published. Here is the link http://cen.acs.org/articles/94/i35/Antibiotics-bugs-always-win.html .

We need to get one of the companies mentioned to do trials specifically for MAC and TB . We should try writing to them, I am going to give it a go, worth a try. What do you think? Good to know lots is going on in the antibiotic world tho.

Jump to this post

Yay boomerexpert the more we can get our message out there the better. We all need to write to the labs mentioned, worth a try. I will do a list of the labs when I get a min.

REPLY
boomerexpert | @boomerexpert | Nov 26, 2016
In reply to @heathert "Hi all just read interesting article from sept 2016 re new antibiotics. There seems to be..." + (show)
@heathert

Hi all
just read interesting article from sept 2016 re new antibiotics. There seems to be alot going on in the antibiotic world, however MAC/MAI wasnt even mentioned, so I have written a comment at the bottom which has to be approved before its published, hopefully it will be published. Here is the link http://cen.acs.org/articles/94/i35/Antibiotics-bugs-always-win.html .

We need to get one of the companies mentioned to do trials specifically for MAC and TB . We should try writing to them, I am going to give it a go, worth a try. What do you think? Good to know lots is going on in the antibiotic world tho.

Jump to this post

Terrif! I'll write to all once you post the list! Would you mind posting it on the NTM advocacy forum as well?

REPLY
Katherine, Alumni Mentor | @katemn | Nov 26, 2016

Hello All, I had time after the Holiday to do my "Due Diligence" on that Expand-A-Lung Breathing Fitness Exerciser .. and I don't want to bore you .. but I could save you the time researching that I did. I'll cut and paste what I saved before I ordered the unit. You can either order it direct or from Amazon .. but it sure sounds worth $30 bucks to get some better lung health! I personally am going to go for it and try to be diligent in the 2-4 times a day use that is recommended .. placing the unit nearby wherever you spend the most time of your day. If you are not interested ... just bypass the post! Hugs to all! Katherine

Below is what I researched:

Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com
https://smile.amazon.com/gp/product/B00JWTRA5I/ref=ox_sc_act_title_12?ie=UTF8&psc=1&smid=A35MWDCY6SWWSF
CLEANING
* open it to its easiest breathing position .. drop it into a coffee mug with hot water and antibacterial dishwashing liquid... slosh it around .. then let it sit for 5 or 10 minutes .. rinse it out under the faucet.

LUNG VOLUME AND FORCE http://expand-a-lung.com/expand-a-lung-breathing-trainer/
* It is highly adjustable, from a quite mild resistance for those with respiratory compromise, to extreme for a practically isometric workout .. The air-flow valve is fully adjustable to control the level of resistance for inhaling and exhaling.. there is a knob you turn to adjust how the air flows in and out * I am a brass musician. My tone quality and my dynamic range has improved as well as being able to hold notes longer. It also benefits me in running. I raced a 50 at 12000 feet yesterday having trained at sea level with expand a lungs *When you do this breathing exercise, you will be opening airways into your lungs that have been partially blocked over the years due to natural aging, pollution etc. This exercise would be excellent to rebuild your lung function. * My lung volume and force seems to have increased more dramatically since starting to use it though. * when using this product you are voluntarily disrupting your natural form of breathing and makes you a bit light headed. * It actually helps me more with stamina during exercise. * it is manufactured and was developed here in the United States. Their headquarters are in Miami, Florida. I researched forever trying to find something to get my father off of oxygen, 24/7, as he had COPD. This product did the trick.....he got off oxygen completely. Doctors were amazed and now recommend to their COPD patients. It was originally developed for our USA Olympic athletes. It is an amazing device, made here in our USA! * This one has an adjustment in the end you turn to restrict the breathing. I use it instead of pursing my lips. I can also use it to help when I am walking. I purchased it to help strengthen my lungs as I have severe COPD. We need to keep working on the problem to maintain a quality of life. * It is not an easy thing to use 2-4 times a day, and it takes some time out of your day. I was experiencing a noticeable shortness of breath, which this is helping restore, so I am very glad I found this product. *Small and more compact than you'd think. Great purchase. My racing buddy is getting one too. *Whole purpose is to increase your lungs so you don't have a lot of trouble breathing when tired. Yes it works, I am currently in the military and get my ass kicked on the daily in and out of the pool. Trust me it has helped A LOT. *You will breathe easier, deeper and better for extra endurance. *I recommend it and keep mine at my desk and use it throughout the day. Have had mine for nearly 2 years now and it still works great. *The effort produced and the change in volume of your pulmonary tissue will challenge your metabolism. Gently but noticeably. *Absolutely! The Expand-A-Lung will strengthen your diaphragm and your intercostal muscles which allow you to breathe more efficiently and increase your lung capacity. It should definitely help increase your endurance. *I can say anecdotally that the exercise will open up more lung alveoli thereby increasing O2 uptake and indirectly increasing endurance and boosting anaerobic threshold.* The mouthpiece is health grade clear flexible silicone. *it has built up my lung strength. I have asthma and have to use it regular. *logically I could safely say if it helps folks doing triathlons build their lung capacity for competitions. I'd say that was impressive enough, however in a personal level, it's helped my COPD lungs enough to be able to play a flute. There's no chance of my being outstanding in that field, however it is one aspect that brings joy to my life. *

REPLY
Kay Strand | @kaystrand | Nov 26, 2016
In reply to @heathert "Hi all just read interesting article from sept 2016 re new antibiotics. There seems to be..." + (show)
@heathert

Hi all
just read interesting article from sept 2016 re new antibiotics. There seems to be alot going on in the antibiotic world, however MAC/MAI wasnt even mentioned, so I have written a comment at the bottom which has to be approved before its published, hopefully it will be published. Here is the link http://cen.acs.org/articles/94/i35/Antibiotics-bugs-always-win.html .

We need to get one of the companies mentioned to do trials specifically for MAC and TB . We should try writing to them, I am going to give it a go, worth a try. What do you think? Good to know lots is going on in the antibiotic world tho.

Jump to this post

Boomer good one. I will use this as a base for my letters. Thanks.
Kay S

REPLY
Kathryn S Wilbur | @kwilbur | Nov 28, 2016
In reply to @katemn "Dear All! @apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David,..." + (show)
@katemn

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @margaretg .. Margaret, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, and anyone else I forgot to make note of!

I try really hard to keep the information on our MAC Forum accurate .. so when in doubt I go to “Mecca”! Dr. Timothy Aksamit at Mayo Clinic, Rochester MN speaks nationally and internationally on our disease .. an internationally recognized expert on MAC in other words! So below is a message exchange between the two of us.

Mine to Dr. A;
Dr. Aksamit, we BOTH have a responsibility to the Mayo Clinic Connect Forum on MAC .. that I was asked by Mayo Clinic to moderate .. so we have a responsibility to make sure that the information provided on it is accurate.

PROBLEM: On my Forum it was posted “stated unequivocally that sputum tests are less than accurate, and recommends a bronchoscopy, period. He said he would never do or rely on sputum sampling for a dx - an accurate dx... Wanted you to know.”

MY PROBLEM: You as my doctor have ALWAYS relied on sputum cultures .. and I have always trusted your judgement. NOW it is being inferred that YOU are incorrect in your choices. Frankly it ticks me off as I have stressed that you have guided me with sputum cultures. SO .. what is correct? Do I need to correct myself and say bronchoscopies are the preferred method?? Please let me know ASAP .. because the above information has been posted to my Forum .. and I hate to lead people astray! Best regards! Katherine

Dr. A response to me:
Dear Katherine, There is no information that bronchoscopy is better than sputum collections for assessment of and following NTM lung disease. In patients who do not produce any sputum we often will do bronchoscopy. It is my opinion that serial sputum collections are the gold standard if available and that bronchoscopy is considered if patients are not producing any sputum, equivocal sputum results are noted, or other diagnoses other than NTM are being considered. Hope this helps. Please let me know if additional comments or questions.
Dr. A

Jump to this post

Thank you so much for caring enough to forward me this valuable information. Kathryn

REPLY
Katherine, Alumni Mentor | @katemn | Nov 28, 2016

Kathryn, you are sure doing your Due Diligence! Good for you! Like you I did a LOT in my home to "clean it up" .. researching filtration systems and installing them etc. I really agree with you .. because we really don't know how/where/when our disease develops OR is triggered .. I think we just have to keep plugging along doing as much when/how we can. Because I was also diagnosed with "Reactive Airway Disease" .. I KNOW I am triggered by various things that set off my coughing. That leads me to do all I can to veer away from any known/potential trigger.

My concern about less sputum production is that keep in mind that at least in my mind .. coughing and bringing up sputum is actually my FRIEND! ANY SPUTUM that remains inside our bronchial tubes or lungs can become a breeding ground for more mycobacterium. So IF you get ANY urge to cough .. I encourage you to do your "hygiene coughing" .. and get it up! Of course if there is zero .. frankly I don't have an opinion .. has never happened to me! Really great for you to be having those two CT scans that far apart .. really gives your doctor a feel for any changes!

In terms of catching a cold .. I am not recommending it .. only say it works for me .. but when we travel and I KNOW I am going to be exposed to people with colds/viruses .. I use Airborne and a thing I have only been able to find on Amazon (recommended to me) called
Halo Oral Antiseptic, Citrus .. https://smile.amazon.com/Halo-HL00101-Oral-Antiseptic-Citrus/dp/B009240FPK/ref=sr_1_2_a_it?ie=UTF8&qid=1480391107&sr=8-2&keywords=halo+spray+antise

If you wanted to give it a try .. if you see one of your students with a cold .. I use both the Airborne and the Halo as directed and either do NOT get a cold .. or if I get it I get it for a shorter time. Works for me .. my son who travels a great deals also started using both and said it has helped on the constant planes he is on.

But SOOO glad you are feeling stronger .. there just can't be better news right now for you! .. and that you had such a great Thanksgiving with your family! Forget the holiday drinks .. I am with you! I get migraines from ANY form of alcohol so never indulge! SO glad you let me know you are doing so well .. makes me smile! Hugs to you! Katherine

(Hope you don't mind I will also post this to our Forum in case any little thing might help someone else on our Forum)

REPLY
1 reply
Kathryn S Wilbur | @kwilbur | Nov 29, 2016
In reply to @katemn "Kathryn, you are sure doing your Due Diligence! Good for you! Like you I did a..." + (show)
@katemn

Kathryn, you are sure doing your Due Diligence! Good for you! Like you I did a LOT in my home to "clean it up" .. researching filtration systems and installing them etc. I really agree with you .. because we really don't know how/where/when our disease develops OR is triggered .. I think we just have to keep plugging along doing as much when/how we can. Because I was also diagnosed with "Reactive Airway Disease" .. I KNOW I am triggered by various things that set off my coughing. That leads me to do all I can to veer away from any known/potential trigger.

My concern about less sputum production is that keep in mind that at least in my mind .. coughing and bringing up sputum is actually my FRIEND! ANY SPUTUM that remains inside our bronchial tubes or lungs can become a breeding ground for more mycobacterium. So IF you get ANY urge to cough .. I encourage you to do your "hygiene coughing" .. and get it up! Of course if there is zero .. frankly I don't have an opinion .. has never happened to me! Really great for you to be having those two CT scans that far apart .. really gives your doctor a feel for any changes!

In terms of catching a cold .. I am not recommending it .. only say it works for me .. but when we travel and I KNOW I am going to be exposed to people with colds/viruses .. I use Airborne and a thing I have only been able to find on Amazon (recommended to me) called
Halo Oral Antiseptic, Citrus .. https://smile.amazon.com/Halo-HL00101-Oral-Antiseptic-Citrus/dp/B009240FPK/ref=sr_1_2_a_it?ie=UTF8&qid=1480391107&sr=8-2&keywords=halo+spray+antise

If you wanted to give it a try .. if you see one of your students with a cold .. I use both the Airborne and the Halo as directed and either do NOT get a cold .. or if I get it I get it for a shorter time. Works for me .. my son who travels a great deals also started using both and said it has helped on the constant planes he is on.

But SOOO glad you are feeling stronger .. there just can't be better news right now for you! .. and that you had such a great Thanksgiving with your family! Forget the holiday drinks .. I am with you! I get migraines from ANY form of alcohol so never indulge! SO glad you let me know you are doing so well .. makes me smile! Hugs to you! Katherine

(Hope you don't mind I will also post this to our Forum in case any little thing might help someone else on our Forum)

Jump to this post

Thank you for all your kind thoughts. I do have days of coughing up sputum which I do by lying down for about 1/2 hour and just cough, cough, cough. I tell visitors I am taking a nap. But a day I don't have to do that is a good day - more energy. It's up and down.

You are so kind. Thank you.

REPLY
heathert | @heathert | Dec 4, 2016
In reply to @heathert "Hi all just read interesting article from sept 2016 re new antibiotics. There seems to be..." + (show)
@heathert

Hi all
just read interesting article from sept 2016 re new antibiotics. There seems to be alot going on in the antibiotic world, however MAC/MAI wasnt even mentioned, so I have written a comment at the bottom which has to be approved before its published, hopefully it will be published. Here is the link http://cen.acs.org/articles/94/i35/Antibiotics-bugs-always-win.html .

We need to get one of the companies mentioned to do trials specifically for MAC and TB . We should try writing to them, I am going to give it a go, worth a try. What do you think? Good to know lots is going on in the antibiotic world tho.

Jump to this post

sorry I havnt done the list, have been busy, I was just going to use the companies used in the article so anyone could do the list if they get time before me.

REPLY
Katherine, Alumni Mentor | @katemn | Dec 4, 2016
In reply to @heathert "Hi all just read interesting article from sept 2016 re new antibiotics. There seems to be..." + (show)
@heathert

Hi all
just read interesting article from sept 2016 re new antibiotics. There seems to be alot going on in the antibiotic world, however MAC/MAI wasnt even mentioned, so I have written a comment at the bottom which has to be approved before its published, hopefully it will be published. Here is the link http://cen.acs.org/articles/94/i35/Antibiotics-bugs-always-win.html .

We need to get one of the companies mentioned to do trials specifically for MAC and TB . We should try writing to them, I am going to give it a go, worth a try. What do you think? Good to know lots is going on in the antibiotic world tho.

Jump to this post

Hello Heather, no problem! It is such a busy time of year. That will be a good task for the new year when things slow down for ANYONE on our Forum when they get some time and energy . . not to worry .. that is why we are a community of "all for one .. one for all"! I'm sure someone will jump in and put together the list when the new year arrives and someone has time. Just relax and enjoy the Holiday season! Hugs to you and to everyone at this wonderful time of year! Katherine

REPLY
bruce668 | @bruce668 | Dec 4, 2016

I'm new on this forum but my wife and I have both recently been diagnosed with Mac and we are trying to learn all we can before our next doctors appointments. Can anyone tell us a good doctor in Asheville NC ?

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