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 | May 15, 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

@hallann welcome on this site.  Do not let it scare you because many people on this site have more disease than bronchiectasis and Mac.  MAC is an organism that gets into your lungs and can multiply.  I had it but never had many symptoms other than mucous in my throat and getting some white sputum white.  When The sputum would get yellowed I was using clear lung.  A natural herbs to clear the mucous.  My infection Doctor never wanted me to take the antibiotics because of the secondary affects.

 I am glad I didn’t take it.  My pulmonary doctor was doing a broncoscopy every two years to clean it and last one the lab report confirm no more MAC.  Bronchoscopy is the most reliable source to know if you have a MAC or not.  Hallann my doctor for MAC said

many more people live without symptom with a MAC in there lungs so if you do not have much symptoms the best thing is to be careful not to eat bad food to activate it I think! Stay positive and do prevention. Things will be find!  Nick 52

REPLY
nick52 | @nick52 | May 15, 2018
In reply to @chamberlayne "I have also suffered from MAC for too many years. I am on my second round..." + (show)
@chamberlayne

I have also suffered from MAC for too many years. I am on my second round of the three antibiotics. A symptom I get when there seems to be a flare up are joints and tissue that feel like shards of glass. My tong and throat get sensitive and many of my joints get very stiff. Is this all from the Mac or might I have another issue?

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@chamberlayne you may have another issue than MAC ! You may want to check swallowing problems check video deglutition.  You may also do a research on h web by searching the cause for your symptoms.  That could help! I do think it could be another issue than

the MAC!  Nick 52

REPLY
hallann | @hallann | May 15, 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

Only been taking the meds a week started having problems tonight heart fluttering and itching all over haven't even had my first infection dr visit yet

REPLY
nick52 | @nick52 | May 15, 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

@hallann your body is talking to you!  Do you have a lot of bad symptoms? Nick 52

REPLY
terryb1 | @128128terry11t | May 15, 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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What about swimming in well water or salt water pools? More and more pools have well water or salt water -- hopefully much safer for us. Anyone know anything about these possibilities?

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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

Just a coughing

REPLY
Suzie2017 | @suzie2017 | May 16, 2018

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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7 replies
boomerexpert | @boomerexpert | May 16, 2018

@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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3 replies
Suzie2017 | @suzie2017 | May 16, 2018

We will be meeting with the infectious disease doctor next week who will be the second opinion doctor. He will be discussing treating the MAC infection.

REPLY
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?

Jump to this post

Having a hard time with replying.....not putting my response through

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