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.

cmb1 | @cmb1 | Jan 22, 2023
In reply to @sueinmn "I think each of us has had a different experience with MAC & bronchiectasis. In my..." + (show)
@sueinmn

I think each of us has had a different experience with MAC & bronchiectasis.

In my case, I saw both an ID doc, who managed my meds, and a pulmonologist, who manages my lung health. It was extremely helpful because they functioned as a team, and kept my primary in the loop as well.
Now that I have been off the antibiotics for 3 years, I continue to see the pulmonologist (first every 3 months, then 6 months, now annually unless I get worse.

As for bronchodilators. my pulmonologist has transitioned my from (inhaled and/or nebulized) levalbuterol plus budosenide as needed to a (generic) Symbicort inhaler, which has calmed my tremors a great deal. It has been the BEST management tool for my combination asthma and bronchiectasis. I made it through allergy seasons and a respiratory virus without a major exacerbation for the first time in probably 10 years. I also neb 7% saline and do airway clearance (Aerobika) to keep the NTM at bay.

As for the O2 sat question - hmm... I personally have wonky O2 sats - probably due to a lifetime of lung issues so have never considered this. I think the better question, if you are dealing mycobacteria, is "Are you keeping your lungs clear of mucus by doing regular airway clearance?" If you are able to do so without albuterol, maybe ask the doc about 1)stopping, 2)stepping down to a puff on an inhaler, or 3)substituting a less tremor causing med like levalbuterol or Symbicort.

Are you doing airway clearance regularly? Do you use saline nebs or a device to help move the mucus out?

Sue

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Thanks Sue.  Will take your recommendations!  Thanks so much for your expertise.  I do airway clearance currently but mostly I find a.m. and p.m. times I retrieve a lot of clearance    regularly with breathing techniques only.  I will go to ID doc this week and hopefully get a better result on my sputum sample.  Encouraged by your 3 years stopping antibiotics!  Hope this holds forever.  I take 4hr immune therapy IV’s once a month and no more exacerbations here either. But boy do I get exhausted easily!  Keeping my mask on too unless outdoor at restaurants with friends! 

Sent from Yahoo Mail for iPhone

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1 reply
kathyhg | @kathyhg | Jan 22, 2023
In reply to @tconz "I also use the LifeStraw Pitcher but you don't boil your water before putting it in..." + (show)
@tconz

I also use the LifeStraw Pitcher but you don't boil your water before putting it in pitcher do you? From my understanding I can use tap water and the LifeStraw will filter it. I had once read where Fiju and Smart Water were safe to drink but then recently someone posted they were not. The spring water sounds like a good alternative. Let me know if you have any more tips because it is so helpful since I just started the Big 3.

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I use tap water with my lifestraw water jug. I think that’s the idea.
It seems that changing the filter every 2 months is pretty important.

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1 reply
m24 | @m24 | Jan 23, 2023
In reply to @lauraadam2425 "Hi, went to my infectious disease Dr and he said 2 cultures ago only 1 out..." + (show)
@lauraadam2425

Hi, went to my infectious disease Dr and he said 2 cultures ago only 1 out of 3 grew anything and it wasn't the one they were treating me for. However the latest 3 aren't growing anything. If the next 3 are negative I will start my last year on the big 3 antibiotics as long as they stay negative. Have been diagnosed since Feb 2022, on big 3 since 8/22. Keeping my fingers crossed. Have side effects but worth it if cultures finally come back negative. He said I can stop the nebulizer since it wasn't working but if cough gets worse have to start using it again.

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Hi, glad you’re doing well! My doctor says that since I developed bronchiectasis from my Mac infection, I need to do the nebulizer twice a day. I do it with the 7% saline solution without the albuterol which affects my heart. I was told that most people develop the bronchiectasis as a result of the Mac infection.
Best of luck to you!

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1 reply
lauraadam2425 | @lauraadam2425 | Jan 24, 2023
In reply to @m24 "Hi, glad you’re doing well! My doctor says that since I developed bronchiectasis from my Mac..." + (show)
@m24

Hi, glad you’re doing well! My doctor says that since I developed bronchiectasis from my Mac infection, I need to do the nebulizer twice a day. I do it with the 7% saline solution without the albuterol which affects my heart. I was told that most people develop the bronchiectasis as a result of the Mac infection.
Best of luck to you!

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Thank you, I am not getting my hopes up too much as I know it can turn around st any time but am hopeful. I was very hesitant that I could beat this as I am 76 years old, but very active so maybe I got lucky. Stay hopeful and it will work for you too.

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danrick | @danrick | Jan 24, 2023

Good morning all. Am I in the right place? I'm working with an ID doctor to try to clean up a lung issue with Nocardia Veterana, aspergillus and a bacterial infection as well. These were found as a result of a bronchoscopy
for the second time. First time was in 2018, this time in July 2022. I have had 5 months of Cresemba, a number of weeks on Sivestro, azithromycin and had a couple weeks of IV antibiotics while in acute care and nursing home. After all this I guess we won't know if everything is gone unless we do another bronchoscopy? I also have emphysema moderate as well. My pulmo doctor seems unaware of the fungal infections and leaves it to the ID whom I think is pretty knowledgeable. Again, am I in the right place. Feeling very lost at the moment. We are currently on a break from the meds as they were giving my some GI issues, etc.
Rickie

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tconz | @tconz | Jan 24, 2023
In reply to @kathyhg "I use tap water with my lifestraw water jug. I think that’s the idea. It seems..." + (show)
@kathyhg

I use tap water with my lifestraw water jug. I think that’s the idea.
It seems that changing the filter every 2 months is pretty important.

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Thank you and that is what I have been doing as well. If you have any helpful hints please let me know.

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kathyhg | @kathyhg | Jan 24, 2023

I also have the lifestraw water bottle, which I take when we go hiking and even to most restaurants so I can just fill it up with water wherever I am.
I recently bought one of the lifestraw gravity bags to take on vacation because it holds 3 litres of water and is so compact when not in use and folded up. I haven’t tried it yet but relieved that it alleviates some of my travel concerns.

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med08 | @med08 | Jan 25, 2023
In reply to @cmb1 "Thanks Sue.  Will take your recommendations!  Thanks so much for your expertise.  I do airway clearance..." + (show)
@cmb1

Thanks Sue.  Will take your recommendations!  Thanks so much for your expertise.  I do airway clearance currently but mostly I find a.m. and p.m. times I retrieve a lot of clearance    regularly with breathing techniques only.  I will go to ID doc this week and hopefully get a better result on my sputum sample.  Encouraged by your 3 years stopping antibiotics!  Hope this holds forever.  I take 4hr immune therapy IV’s once a month and no more exacerbations here either. But boy do I get exhausted easily!  Keeping my mask on too unless outdoor at restaurants with friends! 

Sent from Yahoo Mail for iPhone

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What is 4 hr immune therapy IV?

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1 reply
tconz | @tconz | Jan 27, 2023
In reply to @sue102 "Dear toons, bring your own bottle of water with you to restaurants. Here are my options:..." + (show)
@sue102

Dear toons, bring your own bottle of water with you to restaurants.
Here are my options:
1. I boil a pot of tap water at home for 10+ minutes, pour some in glass bottles and save the rest for washing vegetables and fruits to be eaten without cooking.
2. I use LifeStraw pitcher that filters tap water. I use it for drinking and herbal tea. I bought the 10 cup pitcher so I refill it every other day.
3. Bottled spring water, is supposed to have very little mycobacteria, if any. I bring one with me in the car and into a restaurant. There is no issue with bringing it to any restaurant.
In my bathroom, I have AquaMed filters for the shower and sink.
I hope you find a way that works for you.
Best of luck.

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Have you found anything other than bottled spring water to get in a restaurant. Do you ever order a soda?

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 27, 2023
In reply to @tconz "Have you found anything other than bottled spring water to get in a restaurant. Do you..." + (show)
@tconz

Have you found anything other than bottled spring water to get in a restaurant. Do you ever order a soda?

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Playing devil's advocate again...remembering that NTM is everywhere - air water and soil, and that bronchiectasis is a disease I must live with for a long time.
Here is my inquiry for today - not meant to scare you, but rather to make you think about how far to carry caution - Do you sterilize every cup, glass, dish and utensil that comes into contact with every morsel of your food and every drop of your beverages? Do you sterilize every item that comes into your possession? Do you remove all clothing and footwear outside your home and discard it before entering? Is your home a sterile bubble with no outside air exchange?

If the answers are "No", you are exposed to NTM every day.

I have made the conscious decision that spending my life worrying about ...
sterile drinking water, NTM in the air, or germs on my clothes and belongings ... is not how I choose to live.

I largely drink bottled spring water, but if it is not available, I make do with the tap. I order beverages in restaurants or drink them in friends' homes - with ice from commercial ice machines.

So far (3+ years off the Big 3) it has worked for me, with only a few minor exacerbations. I consider healthy food, adequate rest and thorough airway clearance with saline are more important for my long term health, my sanity and my ability to live a satisfying life.

I have not yet seen a rigorous scientific analysis that demonstrates drinking only sterile water prevents NTM infection/reinfection. Can anyone cite such a study?
Sue

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