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.

Jennifer | @megan123 | May 16, 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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Ok finally....have found nothing new, then what we already no about swimming pools...indoor harbouring MAC, outdoor as well, but maybe not as bad, because u r outside??? Salt water and fresh water, have t read anything....it seems to me that salt water, when heated also carries MAC, but maybe not as bad????? So I would not go under water, and maybe wear a mask to tread water lightly, and cool off...just the conversations we have already had??? I'll keep looking✌️

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irene5 Irene Estes | @irene5 | May 16, 2018
In reply to @boomerexpert "@suzie2017 recommend you Google "indications of end stage COPD"...also get a second opinion from a doc..." + (show)
@boomerexpert

@suzie2017 recommend you Google "indications of end stage COPD"...also get a second opinion from a doc willing to go over the results with you two.

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Yes, that is good advice. Maybe even bring a friend as well. The more eyes and ears the better. It is often hard to understand things when we are so close to the situation.

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nick52 | @nick52 | May 16, 2018
In reply to @hallann "Would appreciate any information on this mac lung disease was just told I have it scared..." + (show)
@hallann

Would appreciate any information on this mac lung disease was just told I have it scared of what I have read

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@hallann good if it is the only symptoms!  You may want to try Clear Lung (blue bottle) to clear the lungs of mucus.  It was the same with me I was coughing but the clear was clearing the lungs.  I know it worked for me when I was coughing but noone is

alike! 

Nick 52

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hallann | @hallann | May 16, 2018
In reply to @hallann "Would appreciate any information on this mac lung disease was just told I have it scared..." + (show)
@hallann

Would appreciate any information on this mac lung disease was just told I have it scared of what I have read

Jump to this post

Thank you

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nick52 | @nick52 | May 16, 2018
In reply to @boomerexpert "@suzie2017 recommend you Google "indications of end stage COPD"...also get a second opinion from a doc..." + (show)
@boomerexpert

@suzie2017 recommend you Google "indications of end stage COPD"...also get a second opinion from a doc willing to go over the results with you two.

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@suzie2018 no wonder your husband feel tired with this diagnosis Suzie! It is not tnr Mac is big problem I think it is more his COPD problem. You must request an appointment with your family doctor to get an interpretation of the report.  The lab result of

his bronchoscopy will take few fews to a month. You also can google collapse lung etc.

I will keep him in my prayers and keep up the search! Nick

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hallann | @hallann | May 17, 2018
In reply to @hallann "Would appreciate any information on this mac lung disease was just told I have it scared..." + (show)
@hallann

Would appreciate any information on this mac lung disease was just told I have it scared of what I have read

Jump to this post

There's so many of them is there a brand that's better

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cowgirlmt | @cowgirlmt | May 17, 2018

Has anyone been to National Jewish Health in Denver Colorado?? I did a phone consult with them this morning; pending an appointment. I am just trying to figure out if I will need to take a week off of work to fly up there or if it will just be an appointment 1 day.

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4 replies
boomerexpert | @boomerexpert | May 17, 2018

@cowgirlmt many have including this forum's founder...read through and you'll find lots of references to it!

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nick52 | @nick52 | May 18, 2018
In reply to @hallann "Would appreciate any information on this mac lung disease was just told I have it scared..." + (show)
@hallann

Would appreciate any information on this mac lung disease was just told I have it scared of what I have read

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@ hallann yes Ridgecrest clear lung blue bottle. It as lung decongestion in it! Nick

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 18, 2018
In reply to @suzie2017 "My husband had his bronchoscope yesterday. The report shows terms that I am not familiar with...." + (show)
@suzie2017

My husband had his bronchoscope yesterday. The report shows terms that I am not familiar with. The doctor came out to talk to me but rattled on so fast and I was unable to compare what he said to the report. Here are some of the phrases in the report. Left lower lobe collapsed lung and pushing against the heart, abnormal left main stem bronchus (report goes on to say the same thing about right, left upper, left lower, right upper right middle and right lower lobes) including the subsequent. Washings were obtained in the entire tracheobronchial tree and return was cloudy. Doctor used the words “milky” and said it could represent a new infection. Area of chronically inflamed mucosa was found throughout the tracheobronchial tree. Mucous was copious, green, mucopurulent and thick, underlying mucosa is friable, extrinsic compression was found in the left lower lobe segment. No attempt to do TBBrushing of LLL segment due to friable bronchial mucosa (must mean blood). Does all of this point to end of stage COPD?

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@suzie2017 Hi Suzie. The fever you husband has plus the report from the doctor's findings suggests severe lung infection. It seems to me that he needs good antibiotics NOW. He sounds like he is in very bad shape, they may want to put him on an IV. Please make sure this I.D. doctor is knowledgible in mac infections. If your husband continues to suffer before his next appt. have him go to the emergency room. They may go ahead and admit him and put him on IV. I had to do that myself last year. Your hubby sounds like he is in respiratory trouble. A collapsed lung is serious. Please keep us posted on his condition. Hugs -Terri

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