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.

ling123 | @ling123 | Apr 24, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@ginak I'm reading your response to Nick's post and chuckling about what you said about food. I'm the say way. I know I should watch what I eat to reduce production of mucus. But I just can't do it. My pulmonary doctor did order a procedure done to see if I had GERD. The answer is no. So I continue eating what I like to eat and settle for tolerating the excess mucus in the process. I love food. So it is all worth it for me.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 24, 2018
In reply to @joan912 "My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big..." + (show)
@joan912

My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big 3, but later told him not to take any, if he won't take all 3. He had a bad reaction to Rifabutin, which caused chest pains. He asked if there was a substitute for that, but apparently not.

He had 2 CT Scans, one in March, the second in May. The second did show some improvement, but also diagnosed bronchiectasis, which the first Scan did not. He asked for another one this month. Now his doctor told him that he doesn't need another CT Scan at all, and, if anything, he could have a Chest X-ray. A chest X-ray cannot diagnose bronchiectasis so, to me, her response is outrageous. His doctor seems to be very ineffective and doesn't seem to care about his well-being. She never asks how he is, nor offer any solutions to his constant sputum. I'm afraid to ask for another pulmonologist at Kaiser, because I'm afraid they will back each other up, or at least not contradict each other.

Does anyone have experience with Kaiser? My husband wants to see numerous other pulmonologists in other cities and wants me to take time off from work (let alone spending a lot of money since it will all be out of pocket), to make appointments for him (he doesn't work). I simply cannot do so, since I have no backup for my job. I'm willing to travel to one place, maybe Mayo Clinic in Rochester, MN.

If I can stay local, does anyone have a recommendation for a well-respected, knowledgeable MAC doctor in the Bay Area of California?

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Hi @megan123
Here are the links to the conversation you had with Katherine and others about swimming and pools.

- Swimming in chlorinated swimming pools https://connect.mayoclinic.org/discussion/swimming-in-chlorinated-swimming-pools/

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 24, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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Here's the link to the discussion about prevention:
- How To Prevent Re-Infection of MAC/MAI https://connect.mayoclinic.org/discussion/how-to-prevent-re-infection-of-macmai/

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 24, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@colleenyoung Thank you Colleen! I copied it and saved it to my notepad.

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Suzie2017 | @suzie2017 | Apr 24, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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Thank you very much Teri. Our primary physician is going to refer us to an infectious disease doctor.

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nick52 | @nick52 | Apr 24, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@ginak!  Thanks for your response.  My husband have aFib and git the same treatment as you had except he didn’t get ablation. Can you explain the procedure for ablation.  I think I know what it is but not sure. Maybe you may want to try something to control

the mucus. I know it is had to stay away from food you crave for lol ! Bronchiectasis can be cause by excess of mucus getting to your lungs according to my doctor for Infection of MAC .  That is why we need to have a diet with little mucus forming food. Bronchiectasis

is the reason why we catch organism like the MAC. We are more prone to catch organism from soil, water, dust etc.  Being a smoker doesn’t help for sure.  

Thanks for explaining   Aerobika .  I know what it is . We use that I think in hospital after a surgery to help the lung to work at its full capacity.  Live happily Gina! 

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 24, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@suzie2017 Very good. I hope the I.D. doctor can devise a good plan. Will you please keep us posted?

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Suzie2017 | @suzie2017 | Apr 25, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though...

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He has never really had back problems. However, in the past few months he has had some discomfort in the lower back and in the middle. He also has a small amount of fluid in the lungs which could cause the pain.

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nick52 | @nick52 | Apr 25, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though...

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@suzie2017 yes if he has fluid on his lung it could cause pain in his back.  The fluid on his lung can make him very tired also. Has he tried Clear lung the blue battle to clear his lung.does the Dr know what causes fluid on his lungs.  Clear lung is a mix

if herbs to help clear the congested lungs. What about his digestion and does he have a lot of mucus (clearing throat)? Have a lovely day! The sun is shining here. Life is crazy good!

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Jo Ann K | @jkiemen | Apr 25, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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Usually most people get general anesthesia for Atrial fibrillation ablation. Some lung conditions can increase Atrial Fibrillation. You should find out from an echocardiogram how big the left atrium in size. That would let the MD know how likely the procedure is to be successful. Making sure you don't have sleep apnea is a good idea to make sure that isn't making atrial fibrillation worse. Not everyone is a candidate for atrial fibrillation ablation.

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