(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@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

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!

REPLY
@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

@rmason 

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

REPLY
@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

@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?

REPLY
@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

@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.

REPLY
@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 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…

REPLY
@tdrell

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

Jump to this post

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

REPLY
@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

@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,

REPLY
@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.

REPLY
@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

REPLY
@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

@rmason, Hi Roxanne. I am so glad that some folks stepped up to answer your question. I couldn't contribute as I have not ever done 'The Big 3 ' antibiotic treatment. I was so glad to hear that your sputem test was done properly i.e. the three consecutive day samples. Hardly any doctor gets that right. Where did you see a doctor that instructed you to get three samples?

REPLY
@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

@rmason, Roxanne, can I ask what state you live in and what your occupation is/was?

REPLY
@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

@nick52 how do you take milk thistle?

REPLY
Please sign in or register to post a reply.