(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!

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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.

@beatitnow

Hi everyone! I have looked back through the last couple pages of this post but didn't see much relating to the Corona Virus. Can you all tell me what special things you are doing:

1). What are the best masks to buy?
2). I thought I saw a long time ago someone suggested to buy like "an air filter necklace" that they used on the plane, but it seems it could be helpful right now more than the plane.

Thank you for your help if you can.
Amy

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Hi all,
There is a discussion related to MAC and COVID-19 here:
- COVID-19 and MAC: What are you doing differently to protect yourself? https://connect.mayoclinic.org/discussion/covid-19/

As well as this one with respect to lung health
- COVID-19 Coronavirus and Lung Health: What can you do? https://connect.mayoclinic.org/discussion/covid-19-coronovirus/

There is also a new group dedicated to COVID-19 here: https://connect.mayoclinic.org/group/covid-19/
Discussion include helpful ways to get valid information as well as encouragement and connection during this time when we have to socially isolated ourselves.

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@beatitnow

Hi everyone! I have looked back through the last couple pages of this post but didn't see much relating to the Corona Virus. Can you all tell me what special things you are doing:

1). What are the best masks to buy?
2). I thought I saw a long time ago someone suggested to buy like "an air filter necklace" that they used on the plane, but it seems it could be helpful right now more than the plane.

Thank you for your help if you can.
Amy

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@beatitnow I see the questions about masks are answered. I will add: I IMPLORE EVERYONE to quit buying up the masks - the medical professionals need them desperately, from hospitals to clinics to ambulances to first responders and care facilities. My daughter's metropolitan hospital is rationing them to staff due to short supply.
As for the "air filter necklace" - I'm sorry to say these are really not an effective shield or treatment for anyone, ever. No matter what the ads or salesmen tell you. If they were so effective, every medical professional in the world would want and would wear one. They cannot possibly treat enough air around you to protect you - and anything you might touch, containing the virus or germ, would still be on your skin, and by extension, in your eyes or nose when you touch your face.
These are my new mantras:
Wash, wash, wash your hands.
Keep your hands off your face.
Clean frequently touched surfaces with bleach or disinfectant regularly.
Social distance.
If you are high risk (age, disease, immune compromised) stay out of crowds.
If you are not high risk, stay out of crowds to protect those of us who are.
Self-quarantine at any sign of illness or if you are exposed to the virus.
Don't panic, and don't spend too much time listening and reading about COVID-19 - just be prudent.
So, for the rest of you, what precautions are you taking to keep yourself healthy and safe? And what are you doing to occupy yourself constructively? (If I was back in MN, I would pull out 50 years worth of photos that need organizing! Down here in Texas, I am working to improve my watercolor skills and planning a new quilt for my grandson.)
Sue

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No handshaking is top on my list. Making sure I don't touch doorknobs or latches without having protection for my hands, and calling out others who does...Especially in the men's room. Most facilities has gone to the "blow dryer" but it does no good if you have to open the door after someone who used the facility and choose not to wash their hands. Try holding off going to the Men's room outside of my home...It is hard to do at times.

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@nick52

@beatitnow i take CLEAR LUNGS Extra strenght by Ridgecrest at least once a day to keep airways open and clear. You can purchase it at The Vitamine Store. I also stay home the safest place. Mask is only protecting you from putting your hand in your face. Keep your hand away from tour face stay safe!

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@nick52 Hi Nick! Long time no hear from! I have thought about you and wondered how you have been. Are you in Florida?

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@sueinmn

@beatitnow I see the questions about masks are answered. I will add: I IMPLORE EVERYONE to quit buying up the masks - the medical professionals need them desperately, from hospitals to clinics to ambulances to first responders and care facilities. My daughter's metropolitan hospital is rationing them to staff due to short supply.
As for the "air filter necklace" - I'm sorry to say these are really not an effective shield or treatment for anyone, ever. No matter what the ads or salesmen tell you. If they were so effective, every medical professional in the world would want and would wear one. They cannot possibly treat enough air around you to protect you - and anything you might touch, containing the virus or germ, would still be on your skin, and by extension, in your eyes or nose when you touch your face.
These are my new mantras:
Wash, wash, wash your hands.
Keep your hands off your face.
Clean frequently touched surfaces with bleach or disinfectant regularly.
Social distance.
If you are high risk (age, disease, immune compromised) stay out of crowds.
If you are not high risk, stay out of crowds to protect those of us who are.
Self-quarantine at any sign of illness or if you are exposed to the virus.
Don't panic, and don't spend too much time listening and reading about COVID-19 - just be prudent.
So, for the rest of you, what precautions are you taking to keep yourself healthy and safe? And what are you doing to occupy yourself constructively? (If I was back in MN, I would pull out 50 years worth of photos that need organizing! Down here in Texas, I am working to improve my watercolor skills and planning a new quilt for my grandson.)
Sue

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I guess we will all have our patience tested through this covid-19 pandemic. I have been staying home for weeks now. I stocked up on canned veggies and meats and powdered milk back in Jan. when I first saw China's outbreak. I did that to be prepared for the long haul and not have to go to the store as the virus cases mount. I have been doing deep house cleaning and organizing. Will tackle garage next. Other things I am doing is more cooking and freezing, and baking. I hope to do some artwork also. Then, of course, checking in on our Connect group. Fortunately, I am a natural homebody anyway, so, I am mentally ok with the 'hybernating'. My hubby is still going into stores, and working with builders. He swears he is keeping safe and wearing gloves. I am nervous about him bringing it here to me. We have two homes and have discussed living separately for awhile.

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Hi Terri and all, This is a really trying time. I am exhausted just listening to all the sad news and trying to stay focus on positive things. I wish I could just go out there and held but I can’t. I am also concerned about my kids in the medical field and so many friends and families. But God bless them for all they do. I hope we will all come out off this soon and be stronger. I have found myself doing things that I haven’t done since I was in my teens 🙂 and I’m loving it. I made flowers and loved doing crafts so now that I have so much time in my hand I started doing flowers and oh my goodness I am loving it!! It’s so fun and entertaining because I’m older and have so much more patience. I never thought I would ever go back to that but it’s great. Plus I am not bored l and watching tv all day. I had to cancel my Mayo’s appointment and will be back as soon as the virus is over. I am doing pretty good except for my RA is fighting me every day. Well everyone stay safe and many hug to you all! Hugs to you terry stay strong.

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What a positive outlook you pass on. Thanks. Jane Brown

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Hi everyone.,
Im taking hikes most days in places where there are few to none! I live alone and everyday feel thankful for the big three ( 3months more to go) I try not to get nervous about it coming back and have no idea of the protocol if it does. I don't think people are allowed to keep going back on the big 3 is that correct? Im kinda nervous.
Im the mean time i bird watch, paint read and play the piano. And general telephone chatter with loving friends.
If anyone has answers to my questions I'm all ears!
Kee safe. Keep Well everyone. We will get through this with diligence through support groups, friend groups and the good doctors we have.
Deborah

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@windwalker

@nick52 Hi Nick! Long time no hear from! I have thought about you and wondered how you have been. Are you in Florida?

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Hi Terry, no we are back to Canada yesterday due to the virus! I have been thinking of you and all the people who have Bronchiectasis lung! I am doing very very good! I will have a scan this year after two years as a follow up! As a prevention , I am taking my Clear lung extra strenght from Ridgecrest once a day or every two days. With my collaidal silver for immune system. I found the 120 capsules for only 30$ at Vitamines store. Very good price! I have a lot of energy, no more sputum knock on wood and thanks to my milk thistle from Hübner. I have been thinking of you too! Glad to have news from you! Hope to have the chance to meet you one of these days! Ithank god every day for giving me a good health and pray for those who have problems with their lungs! We are in quarantine in our house for 14 days and order to stay home unless we need something essential.
Love ❤️ you! Take care of yourself.

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@nick52

Hi Terry, no we are back to Canada yesterday due to the virus! I have been thinking of you and all the people who have Bronchiectasis lung! I am doing very very good! I will have a scan this year after two years as a follow up! As a prevention , I am taking my Clear lung extra strenght from Ridgecrest once a day or every two days. With my collaidal silver for immune system. I found the 120 capsules for only 30$ at Vitamines store. Very good price! I have a lot of energy, no more sputum knock on wood and thanks to my milk thistle from Hübner. I have been thinking of you too! Glad to have news from you! Hope to have the chance to meet you one of these days! Ithank god every day for giving me a good health and pray for those who have problems with their lungs! We are in quarantine in our house for 14 days and order to stay home unless we need something essential.
Love ❤️ you! Take care of yourself.

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@nick52 Glad to hear you made it hzome safelt. All,of our Canadian friends were ordered home - many well ahead of planned dates. Did youmencounter issues along the way? One friend found closed rest stops, but the others seem to have done just fine. I wish you an early Spring.
Sue

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