(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

Happy thanksgiving to all!

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And to all….a deep breath!

Liked by Elaine

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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

Liked by imeehaigt

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Dear All,
Hope your Thanksgiving had you counting your “gratitudes” .. whatever “gratitudes” you have in your life! If in life we keep in mind our gratitudes .. indeed our lives will be brighter .. happier and certainly more serene. Because no matter what is happening in our lives .. surely there is another who has it tougher .. AND in our lives I’ll bet we had a moment of “sunshine”! Someone smiled at us today .. someone had a kind word .. the sun DID shine today .. whatever that gratitude was today .. relish it and be grateful! Today WILL be a good day! Hugs to all! Katherine

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@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

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Thank you so much!!❤️

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@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.

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Heather, with the Holidays .. I just had time to read this article .. REALLY interesting! Thanks for posing it!

Especially the part:
“Investing in an antibiotic firm can be a tough sell: To keep resistance levels down and maintain effectiveness, doctors often hold new drugs in reserve and use them only when needed and with limited patient populations. Companies support such good antibiotic stewardship, but they lament its business impact. “Uniquely among therapeutic categories, the better your drug is, the less it is going to be used,” Melinta’s Sun says. “And that is not a good investment thesis.”

I decided to comment the below:
I moderate a Forum for MAI/MAC .. MYCOBACTERIUM AVIUM INTRACELLUCARE COMPLEX for Mayo Clinic .. it is called Mayo Clinic Connect. You can see just how active AND how desperate people are for new antibiotic to help this disease at: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=17

I as an example took 4-5 antibiotics for 30 months in an attempt to stabilize this disease. WHY .. because the industry has NOT created more effective antibiotics for this VERY resistant disease. I do not think the drug industry realizes just how many of us are out here suffering .. I know they see only the dollar signs .. BUT the sheer numbers are rapidly increasing in this disease. PLEASE take a good look at the numbers and create a new antibiotic that is more effective for MAI/MAC!

Hope others on our Forum read this interesting article AND type in a comment .. the more the merrier! Hugs to all! Katherine

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@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

Yes I found it extremely interesting and Im glad you read it, the more we can get the MAC message out there the better, and I take every opportunity. We need to get these new drugs tested on MAC somehow, Maby we need to target a research lab mentioned and suggest it to them, there were many mentioned, if we chose one each, we could get somewhere. We have the cystic fibrosis and HIV communities with us and it would also help the TB community so together we are a big group. Together we can make a difference.

REPLY
@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

Heather, if you do the research on which lab you think may be the most likely to respond .. I would be willing to post it on our Forum and see if our group will try to individually contact them. Let us know. Thanks for your help! Katherine

Liked by tdrell

REPLY
@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

I too placed a comment – looks like about an hour after Kate! Here’s mine:
“NTM’s are a fast growing scurge with no cure given use of only old generation antibiotics that offer minimal effect. Add to that the treatment for many is worse than the infection (since a minimum of 3 extremely strong antiobotics are used – killing everything in sight except the mycobacteria, the result is nausea, overwhelming fatigue, GERD, etc. with little impact on the target).
If the research community waits much longer to tackle this potential health crisis (given no reporting of infection required, it is believed to be more far-reaching than current stats indicate – and more mycobacteria are becoming resistant to the old-school antibiotics), you will be far behind the curve, unable to catch up.
Tackle this now, while your results can still be meaningful.”

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@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

Thanks, maby try writing to a few would be our best option.

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@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
@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?

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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
@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

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@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

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

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