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(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.

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Jennifer | @megan123 | Apr 27, 2018
In reply to @joan912 "My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big..." + (show)
Profile picture for joan912 @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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Thanks Colleen✌️

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rmason | @rmason | Apr 27, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
Profile picture for Sophie @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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I am new to this post and newly diagnosed with MAC and bronchiectesis-the pulmonologist I saw in Springfield Mo did the three consecutive day sputum test-sent out to Mayo Clinic lab!

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nick52 | @nick52 | Apr 28, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
Profile picture for Sophie @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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@rmason 

Welcome to our site!  Hope we can help you by sharing our experience.  We all have different experience! Vey interesting!  Nick52

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Terri Martin, Volunteer Mentor | @windwalker | Apr 28, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
Profile picture for Sophie @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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@rmason, Hello, and welcome to our Connect group. Do you have a first name that you'd like to use? (more personal) This site has lots of helpful members that are here for you. As you share your experiences or have questions; you may find that others may chime in to help. Is there anything you'd like share or ask?

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rmason | @rmason | Apr 28, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
Profile picture for Sophie @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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@windwalker My name is Roxanne-I would like to hear about people’s results after a year on the 3 antibiotics 3 times weekly. Did symptoms for most “go away”? My symptoms were coughing up blood on two separate occasions and a minor cough. Other than that no health issues at all.

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Sophie | @sophie1019 | Apr 28, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
Profile picture for Sophie @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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Hi I'm sophie. I was on the big 3 for 2 years, just getting off in march of this year. The only problem I had was on the erthomycin and had to come off because of vision problems. Then I was put on moxifloxcin in its place. My stomach ached a lot when I 1st started taking the meds and I lost about 22 pounds. I had to watch wh as the I ate to keep the aches down. That was it for me. I had blood test done every week to keep check on my liver and kidneys...

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Granny | @goddard | Apr 29, 2018
In reply to @tdrell "Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia....but..." + (show)
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Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia....but eventually found out the pain was due to osteoarthritis in the left hip.tdrell

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Is this pain in hip related to bronchiectasis / MAC? I have arthritis in left hip too.

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heathert | @heathert | Apr 29, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
Profile picture for Sophie @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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@rmason Hi Roxanne, I was on the big 3, 3 days a week for 18 months and had some nodules go away but had to go onto the daily meds which got rid of the rest of the nodules and cavities. I guess everyone is different, mine was through all my lobes with cavities. I feel good now, just get the reflux from the meds,

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egayle187 | @egayle187 | Apr 29, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
Profile picture for Sophie @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...

Jump to this post

Hi Roxanne,
I was on the big 3 for 14 months. After the first month there was no sign of MAC. My coughing decreased, but came back over and over after stopping the antibiotics.My lungs were filled with Candida which my ID doesn't treat. I used candida Cleanse for two months and it went away. That led to better breathing and less dependence on O2. Asthma exacerbations every 3-4 weeks continued.
I had recurring coughing which has been handled with low acid diet and sleeping upright in recliner plus acupuncture for the ongoing nerve related cough. The acid reflux and MAC destroyed the lower lobe of my right lung. It seemed to be spreading until I took drastic measures. No surgery for me due to advanced age. I take supplements to clear lungs.
I feel much better and will be taking up gardening again as soon as the temperature allows.

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nick52 | @nick52 | Apr 29, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
Profile picture for Sophie @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...

Jump to this post

@egayle187. That confirm exactly what my pulmonary specialist said. Acid stomach can cause Bronchiectasis. By taking care of the acid stomach you are also reducing the risk of damaging your lungs and catching MAC.  I feel a good part responsible for rhe stomach

acid is the liver either because it is congested or because you had your gallbladder removed. Eating an acid free diet helps the liver to digest better the food we put in our stomach make it better or worst.  Milk Thistle is a good detoxifierand I take some

after an acid meal for control  and the probiotic from Dr Ohirrah also helps my digestive system and I am able to eat more acid food now but with moderation.  When I stop Dr Ohirra probiotic symptoms (mucus) come back. Thanks for sharing , i am glad to hear

that you feel much better and you seem to be in control. Those organism like the MAC live and nourishes themself in an acid environnement. The same with candidas. Have a lovely Sunday! Nick52

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