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.

Moderator
Colleen Young, Connect Director | @colleenyoung | May 14, 2018
In reply to @jewel8888 "It's been a while since I've posted. Your help was most important to me while my..." + (show)
@jewel8888

It's been a while since I've posted. Your help was most important to me while my providers and I monitored a cavitary lesion dx 2 yrs ago. Good news....they say it's non cancerous and is stable not needing followed. Bad news..30 days later my Rheumy says I am positive for latent TB. It's happened within last 2 yrs and I have RA, Psoriatic arthritis, Sjorgrens. I feel the weight of the world on me having to take the isonizid and vit. B. I realize this group discusses non tb mac but you are my friends and feel I need you close by again.

I have concerns about neuropathy, liver, upset stomach, needing my methotrexate, muscle pain in thoracic. It is a lot to digest and I put the question to main site since I couldn't find tb group...i miss you wonderful friends here too!!!

Thank you,
Julie

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@toni68, I agree with @egayle187. We learn by sharing and we learn from everyone. Happy to have you simply to read along until you feel comfortable with the site and with sharing more.

To help you learn more about how to use Connect, you can refer to these step-by-step instructions https://connect.mayoclinic.org/get-started-on-connect/ Don't hesitate to ask questions. It can be daunting at first, but you'll get the hang of it. And I'm always here to help answer questions about finding your way around.

REPLY
chamberlayne | @chamberlayne | May 15, 2018

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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2 replies
hallann | @hallann | May 15, 2018

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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16 replies
boomerexpert | @boomerexpert | May 15, 2018

@hallann we all understand that scary dx! Read through postings here...you'll find many folks, like me, who are asymptomatic and don't as yet require treatment...you'll find others who found great docs and treatments far less problematic than simply taking the "big 3"...first step is to find the finest doc in your area for MAC...just any pulmo or infectious disease doc won't do. If near a Mayo clinic, go there. Are you experiencing symptoms?

REPLY
5 replies
jspremich | @jspremich | May 15, 2018

I was diagnosed with MAC and another bacteria over two years ago. Apparently, one is not good enough. Out of the ten antibiotics that were capable of working wonders on my bacteria, only 2 would be effective and only 50% of the time. Lucky me. Fortunately, my infectious disease (one retired and another took over) specialists, both discouraged me with starting the cocktail of drugs. They advised me to stay clear, because of obvious side effects, of the medicine as long as I was feeling o.k. Over the years the symptoms would come and go. For the last 6-7 months, I have (knock on wood or maybe gold) had minor flare-ups. For whatever it's worth (And I'm not claiming anything here), I'm a vegetarian and have been for 45years. (I'm 81)
MAC periodically reminds me that its still there, waiting to strike at any moment.

REPLY
11 replies
Jo Ann K | @jkiemen | 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

It is very scary to read it. I have been on the medications for 6 months. The side effects were a bit bad with rifabutin but I was able to take Rifampin in its place. So far not horrible. I think worrying about it is the worse part. I work full-time etc.

REPLY
Jo Ann K | @jkiemen | 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?

Jump to this post

Rifabutin made my joints hurt so I was changed to rifampin and that was better.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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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@meagan123 Hi there. Did you get your answers about swimming in pools, etc.?

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nick52 | @nick52 | May 15, 2018
In reply to @jspremich "I was diagnosed with MAC and another bacteria over two years ago. Apparently, one is not..." + (show)
@jspremich

I was diagnosed with MAC and another bacteria over two years ago. Apparently, one is not good enough. Out of the ten antibiotics that were capable of working wonders on my bacteria, only 2 would be effective and only 50% of the time. Lucky me. Fortunately, my infectious disease (one retired and another took over) specialists, both discouraged me with starting the cocktail of drugs. They advised me to stay clear, because of obvious side effects, of the medicine as long as I was feeling o.k. Over the years the symptoms would come and go. For the last 6-7 months, I have (knock on wood or maybe gold) had minor flare-ups. For whatever it's worth (And I'm not claiming anything here), I'm a vegetarian and have been for 45years. (I'm 81)
MAC periodically reminds me that its still there, waiting to strike at any moment.

Jump to this post

@jspremich wow! You are doing great!  81 that is great! You must be a very positive and courageous women!  I am so proud of you! Antibiotic could have been worst with all the secondary effect.  Keep thinking your lungs are doing find and keep eating good! That

helps! I will keep you in my prayers! XxooNick52

REPLY
nick52 | @nick52 | May 15, 2018
In reply to @boomerexpert "@hallann we all understand that scary dx! Read through postings here...you'll find many folks, like me,..." + (show)
@boomerexpert

@hallann we all understand that scary dx! Read through postings here...you'll find many folks, like me, who are asymptomatic and don't as yet require treatment...you'll find others who found great docs and treatments far less problematic than simply taking the "big 3"...first step is to find the finest doc in your area for MAC...just any pulmo or infectious disease doc won't do. If near a Mayo clinic, go there. Are you experiencing symptoms?

Jump to this post

Everyone from what I can read who went at mayo clinic was prescribe the big cocktail!  Mayo Clinic ??? They may not promote prevention enough! There is a lot of secondary effect from those antibiotic.  If you have more disease than bronchiectasis and Mac well

that could be different  i wouldn’t know ! 

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