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!

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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.

nick52 | @nick52 | Apr 21, 2020
In reply to @alleycatkate "@nick52 Hi Nic!! So good to hear from you!! It sounds as though your government is..." + (show)
@alleycatkate

@nick52 Hi Nic!! So good to hear from you!! It sounds as though your government is taking a protective and good approach to this virus. You are so fortunate that you live in such a great country. Our leadership is sorely lacking in my opinion. Sorry to get political...I will stop but it is frustrating as you probably know from spending your winters in Florida. So enough...I'm glad you are safe and back in your wonderful Canada. Would you consider adopting me? haha. You are so correct that we, with lung disease, need to stay vigilant and it sounds like you are armed to the hilt with your vitamin supplements....So very smart to boost that immune system!!. Stay safe...Always wishing you the very best! Good luck to all of our brothers and sisters struggling with our disease. Lots of love, Kate

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@alleycatkate, so glad to hear from you and know you are doing find! I am so scare for all of you who really need to go out! I just can’t believe what we see. Thousands of People waiting for a box of food! That is inhuman! Lord knows I am praying for you all! Boosting our immune system is the best thing to do right now and keeping our lungs clear of mucus. Stay away from mucus forming foods. Stay home! Stay safe and we will all make it through this terrible pandemic! Love you! Chow!

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Jennifer | @megan123 | Apr 21, 2020
In reply to @nick52 "@alleycatkate i sure hoep you are ok and everyone on this site also because it is..." + (show)
@nick52

@alleycatkate i sure hoep you are ok and everyone on this site also because it is catastrophic in US. You have as almost half of the cases as the world have. I can’t believe this with a lots of death. Unbelievable! The US government should have taken this more seriously! They said It was a hoax! How stupid! Now the people is paying for there mistake! The government doesn’t gice any compensation to all the people who lost there job due to the virus. No wonder they want to go back to work no matter what. Here the gouvernment first give a compensation of 900$ a week to all the people who lost there job plus 300$ per kids etc and more. No one is in danger of loosing what they have. I feel so sad for all of you! You need to be careful not to catch the virus because it could be deadly for us who have lung disease. I wish the gov. Implement a compensation at least for those who have lung disease like we have here in Canada so we do not have to go out to work and risk our life. I haven’t gone out of the house since We are back March the 21 st. We’ve done a good grocery before leaving Florida because we had to quarantine. In our region we had 7 cases only and they all back to normal. It is a ghost place all around us because everyone stays home or else you pay a fine. I have my Clearlungs in case and I take an immune system probiotic, vit. ACED with zinc & Q10. Please everyone STAY HOME STAY SAFE IT WORKS! I will keep you Kate an all of you in my prayers! LOVE Nic!

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Hi Nick...I'm from Toronto...we aren't in great shape as well probably do to the size of the city and our premier's slow response and Prime Minister to the situation...but anyway...can u tell me where u get your extra strength Clear Lungs..couldn't get it in Florida..

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2 replies
heathert | @heathert | Apr 21, 2020
In reply to @anniepie "@heathert Thanks so much for your kind -- and always helpful -- reply Heather. You are..." + (show)
@anniepie

@heathert Thanks so much for your kind -- and always helpful -- reply Heather. You are a dear woman, and you've given me real hope.
So many people on this site are so kind. You are all saviours! Thank you to everyone.
I pray that all of us and the people we love and care for make it through this awful new crisis affecting the world.

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@anniepie It is so nice to give hopeful news 🙂 , please keep in touch and let me know how you are getting on. My cavities even closed on those meds. All the best to you, hoping you get great results. Take care Heather

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1 reply
nick52 | @nick52 | Apr 22, 2020
In reply to @megan123 "Hi Nick...I'm from Toronto...we aren't in great shape as well probably do to the size of..." + (show)
@megan123

Hi Nick...I'm from Toronto...we aren't in great shape as well probably do to the size of the city and our premier's slow response and Prime Minister to the situation...but anyway...can u tell me where u get your extra strength Clear Lungs..couldn't get it in Florida..

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Jennifer @meagan123 It is true that Ontario and Quebec are the worst province in Canada but also the most population. Saddly travellers and too many people didn’t listen to the government advice to stay home! Stay Safe ! The only way to win he war against the virus! They just ignore the order until the gov. Implemented fine to be paid! It was a bit too late then. Oh! Well we can only control ourself not the others so stay safe! I buy my ClearLung extra strenght in US at The Vitamine Store is the cheapest 39$/ 120 capsule. They have it on Ebay but very expensive. The company is Ridgecrest and the product is Clearlung EXTRA STRENGHT Very important. Try THE NATIONAL NUTRITION.ca in Ontario. They do mail even during the pandemic here are there number 1-800-526-9772. I saw that they have a product called flush but I don’t about that one but ClearLung Extra Strenght is a must for Bronchiectasis lung. I maintain my lungs with this and having a very normal life. I never wanted to take the cocktail and my infectiologue never recommended it! Hope this will help! You can check any natural store that sells vitamine they may have some!
Love Nicole

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 22, 2020

Hi all, I thought I would let everyone know about two important discussions for members of this group, especially during these times. Please see:
- COVID-19 and MAC: What are you doing differently to protect yourself? https://connect.mayoclinic.org/discussion/covid-19/
- Gratitude for this MAC group: Finding Gratitude Daily https://connect.mayoclinic.org/discussion/gratitude-2/

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2 replies
chinasmom | @chinasmom | Apr 22, 2020
In reply to @colleenyoung "Hi all, I thought I would let everyone know about two important discussions for members of..." + (show)
@colleenyoung

Hi all, I thought I would let everyone know about two important discussions for members of this group, especially during these times. Please see:
- COVID-19 and MAC: What are you doing differently to protect yourself? https://connect.mayoclinic.org/discussion/covid-19/
- Gratitude for this MAC group: Finding Gratitude Daily https://connect.mayoclinic.org/discussion/gratitude-2/

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Thank you @colleenyoung . We need all the help we can get. I've been staying at home for a long time now except Dr appointments so I'm ok with it. ive pushed all appointments off til june and it looks like i will be putting them off til August. I've also worn mask and gloves and keep a trench coat at the door that covers most of me and I keep protective gown and shoe covers for visiting mom at the nursing home. Or if i have to be admitted to the hospital for any reason. You guys take good care of yourselves.
Becky Lyons

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2 replies
migizii | @migizii | Apr 22, 2020
In reply to @chinasmom "Thank you @colleenyoung . We need all the help we can get. I've been staying at..." + (show)
@chinasmom

Thank you @colleenyoung . We need all the help we can get. I've been staying at home for a long time now except Dr appointments so I'm ok with it. ive pushed all appointments off til june and it looks like i will be putting them off til August. I've also worn mask and gloves and keep a trench coat at the door that covers most of me and I keep protective gown and shoe covers for visiting mom at the nursing home. Or if i have to be admitted to the hospital for any reason. You guys take good care of yourselves.
Becky Lyons

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You sound similar to how I approach situations in public. Most people I know, though, think I am overdoing it, even though they know I have lung issues. Things are strange and wonderful right now depending on who you meet when out and how grateful we are for each other and the ability to face this time with kindness, patience, a and a smile😊

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anniepie | @anniepie | Apr 22, 2020
In reply to @heathert "@anniepie It is so nice to give hopeful news :) , please keep in touch and..." + (show)
@heathert

@anniepie It is so nice to give hopeful news 🙂 , please keep in touch and let me know how you are getting on. My cavities even closed on those meds. All the best to you, hoping you get great results. Take care Heather

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@heathert Virtual hugs x

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1 reply
anniepie | @anniepie | Apr 22, 2020
In reply to @chinasmom "Thank you @colleenyoung . We need all the help we can get. I've been staying at..." + (show)
@chinasmom

Thank you @colleenyoung . We need all the help we can get. I've been staying at home for a long time now except Dr appointments so I'm ok with it. ive pushed all appointments off til june and it looks like i will be putting them off til August. I've also worn mask and gloves and keep a trench coat at the door that covers most of me and I keep protective gown and shoe covers for visiting mom at the nursing home. Or if i have to be admitted to the hospital for any reason. You guys take good care of yourselves.
Becky Lyons

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@chinasmom I'm doing exactly the same as you Becky -- please continue look after yourself. Annie

REPLY
anniepie | @anniepie | Apr 22, 2020
In reply to @colleenyoung "Hi all, I thought I would let everyone know about two important discussions for members of..." + (show)
@colleenyoung

Hi all, I thought I would let everyone know about two important discussions for members of this group, especially during these times. Please see:
- COVID-19 and MAC: What are you doing differently to protect yourself? https://connect.mayoclinic.org/discussion/covid-19/
- Gratitude for this MAC group: Finding Gratitude Daily https://connect.mayoclinic.org/discussion/gratitude-2/

Jump to this post

@colleenyoung Thanks Colleen

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