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.

nick52 | @nick52 | Mar 24, 2020
In reply to @sueinmn "@nick52 Glad to hear you made it hzome safelt. All,of our Canadian friends were ordered home..." + (show)
@sueinmn

@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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@sueinmn thanks! We had a good trip back to New Brunswick staying in the house. We have 17 cases so far no death! We are much safer here. All the nin essentiel business are close and all measure to protect ourself as been taken. They have soap and water to wash your hand as you enter the store and no big crowd. People here have taken all order from gouv. Seriously! So glad to be home in NB! The Park where we were in Largo have a case of coronavirus sadly! Take care my dear! Stay home best prevention. Wash all what you have delivered home. Virus live on plastic, paper, tissue etc.. be careful! Love

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1 reply
anniepie | @anniepie | Apr 19, 2020
In reply to @nick52 "@sueinmn thanks! We had a good trip back to New Brunswick staying in the house. We..." + (show)
@nick52

@sueinmn thanks! We had a good trip back to New Brunswick staying in the house. We have 17 cases so far no death! We are much safer here. All the nin essentiel business are close and all measure to protect ourself as been taken. They have soap and water to wash your hand as you enter the store and no big crowd. People here have taken all order from gouv. Seriously! So glad to be home in NB! The Park where we were in Largo have a case of coronavirus sadly! Take care my dear! Stay home best prevention. Wash all what you have delivered home. Virus live on plastic, paper, tissue etc.. be careful! Love

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@heathert Hi Heather are you still around? I've thought of you often over the past few months. I hope your recovery is continuing well.
Unfortunately I had some bad news -- after 18 months of treatment for the Intracellulare, it's still in my lungs. I just got the bronchoscopy results. I have to increase all the drugs and the doctor talked about adding Amikacin, which I know you were on. How did you go with that? I hope you are okay in your lock-down. Please get in touch when you can. Annie x

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1 reply
heathert | @heathert | Apr 19, 2020

@anniepie Hi What your Drs are doing is exactly what I was going to say, I was the same after around 2.5 years on 3 days a week meds I still had MAI, I upped the meds to daily (which I should have been on already because I had cavities) and thats when things started to repair in my lungs and MAI did not show in my sputums . Amikacin was an easy drug to take, side effects were in the first few weeks, when I lost my voice for a few days, then I would take a break from it. Let me know if you go on Amikacin, I may be able to help. For me upping meds and Amikacin worked so hopefully it will for you to.

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1 reply
alleycatkate | @alleycatkate | Apr 20, 2020
In reply to @anniepie "@heathert Hi Heather are you still around? I've thought of you often over the past few..." + (show)
@anniepie

@heathert Hi Heather are you still around? I've thought of you often over the past few months. I hope your recovery is continuing well.
Unfortunately I had some bad news -- after 18 months of treatment for the Intracellulare, it's still in my lungs. I just got the bronchoscopy results. I have to increase all the drugs and the doctor talked about adding Amikacin, which I know you were on. How did you go with that? I hope you are okay in your lock-down. Please get in touch when you can. Annie x

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@anniepie Good luck, Annie. I so hope the Amakacin works for you.

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2 replies
pamelasc | @pamelasc1 | Apr 20, 2020

Hello everyone - just wanted to check in and say how important it is for me to read the comments as they come in, especially at these unsettling times. You are all amazing, and so helpful! I am staying well, and am in isolation; my daughter gets my groceries and drops them at the door. My regimen, aside from inhalers is taking 2 NAC 600 pills daily, and 2 Clear Lungs pills daily. I send everyone love and best wishes for us all to stay well. Pam

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 20, 2020
In reply to @pamelasc1 "Hello everyone - just wanted to check in and say how important it is for me..." + (show)
@pamelasc1

Hello everyone - just wanted to check in and say how important it is for me to read the comments as they come in, especially at these unsettling times. You are all amazing, and so helpful! I am staying well, and am in isolation; my daughter gets my groceries and drops them at the door. My regimen, aside from inhalers is taking 2 NAC 600 pills daily, and 2 Clear Lungs pills daily. I send everyone love and best wishes for us all to stay well. Pam

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@pamelasc1 Hi Pam! I am glad your daughter is bringing you your groceries. How are you spending your time at your house? Are you still gardening?

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1 reply
nick52 | @nick52 | Apr 20, 2020
In reply to @alleycatkate "@anniepie Good luck, Annie. I so hope the Amakacin works for you." + (show)
@alleycatkate

@anniepie Good luck, Annie. I so hope the Amakacin works for you.

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@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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2 replies
anniepie | @anniepie | Apr 21, 2020
In reply to @heathert "@anniepie Hi What your Drs are doing is exactly what I was going to say, I..." + (show)
@heathert

@anniepie Hi What your Drs are doing is exactly what I was going to say, I was the same after around 2.5 years on 3 days a week meds I still had MAI, I upped the meds to daily (which I should have been on already because I had cavities) and thats when things started to repair in my lungs and MAI did not show in my sputums . Amikacin was an easy drug to take, side effects were in the first few weeks, when I lost my voice for a few days, then I would take a break from it. Let me know if you go on Amikacin, I may be able to help. For me upping meds and Amikacin worked so hopefully it will for you to.

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@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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1 reply
anniepie | @anniepie | Apr 21, 2020
In reply to @alleycatkate "@anniepie Good luck, Annie. I so hope the Amakacin works for you." + (show)
@alleycatkate

@anniepie Good luck, Annie. I so hope the Amakacin works for you.

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@alleycatkate Thanks Kate. Good luck to you too and good luck to all of us.

REPLY
alleycatkate | @alleycatkate | 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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@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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