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!

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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.

sharonp51 | @sharonp51 | Aug 2, 2020

very interesting, thanks for posting

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sharonp51 | @sharonp51 | Aug 2, 2020
In reply to @ckscoville "The only symptom is persistent congestion, along with a lot of dark green/dark brown sputum, very..." + (show)
@ckscoville

The only symptom is persistent congestion, along with a lot of dark green/dark brown sputum, very sticky, despite three daily sessions with a nebulizer and SmartVest. I occasionally get some shortness of breath and chest pain, but I think the chest pain is just due to periodic coughing fits, because the mucus sometimes tends to get stuck in my air pipe and causes me to cough pretty violently until I can clear it out ...not to get too gross in my description!

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Thank you for sharing

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sharonp51 | @sharonp51 | Aug 6, 2020
In reply to @maryke "I was diagnosed with Mac the 7/52015. I am on 3 antibiotics (2700mg) per day. I..." + (show)
@maryke

I was diagnosed with Mac the 7/52015. I am on 3 antibiotics (2700mg) per day. I want to know when will I stop feeling so tired? I struggle to eat. Abdominal pain, nausea etc. when I try to clean the house I struggle to breath.

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Hope you are feeling better ..!

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heathert | @heathert | Aug 6, 2020
In reply to @lindam272 "@ckscoville I definitely wouldn't wait that long. I have atypical cystic fibrosis, MAC and bronchiectasis. My..." + (show)
@lindam272

@ckscoville I definitely wouldn't wait that long. I have atypical cystic fibrosis, MAC and bronchiectasis. My CF doc prescribed my vest and Dornase Alpha Pulmozyme inhalation solution for me after my last major exacerbation in 2018. I haven't had to be hospitalized since then. The Pulmozyme is expensive - over $4,000/month. I'm fortunate that my insurance and supplemental insurance covers it. Definitely something to ask about. Linda

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@lindam272 I have 1 CF gene and have had problems with asthma allergys etc all my life, and possibly why I had MAC. Those genes have got to go!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 7, 2020
In reply to @ckscoville "I'm getting pretty discouraged, and my coughing episodes have frequently been very painful. I'm due to..." + (show)
@ckscoville

I'm getting pretty discouraged, and my coughing episodes have frequently been very painful. I'm due to see my Infectious Disease doctor at Mayo again in mid-September, but so far there doesn't seem to be a lot of experience with an Achromobacter infection as best I can tell. Personal opinion: it's making my Bronchiectasis worse.

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Hello @ckscoville. I had that cough that comes with infections for many, many years. Nebulizing 7% saline, sipping 'Breathe Easy' tea, and finally getting the right antibiotics that killed the infection is what got me through it. After coughing constantly for 8 yrs, I finally got it gone in 2016. I didn't think it was possible to ever get rid of it, but it is now gone. You must be diligent with your health routine and learn all that you can. Knowledge is power! If you want to get started on the nebulized saline, is it possible for you to call your dr's office and request a prescription for it?

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1 reply
kathyhg | @kathyhg | Aug 7, 2020

Can you give more information on breathe easy tea? What is it supposed to help with and does it work well? I’m always looking for alternatives to taking more pills. Thanks,

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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 7, 2020
In reply to @kathyhg "Can you give more information on breathe easy tea? What is it supposed to help with..." + (show)
@kathyhg

Can you give more information on breathe easy tea? What is it supposed to help with and does it work well? I’m always looking for alternatives to taking more pills. Thanks,

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@kathyhg Not Terri here, but Breathe Easy Tes is from a company called Traditional Medicinals and is completely herbal and caffeine-free. In additiona to easing breathing, it is quite comforting to sip in cool weather. Many people like to add a bit of sweetener.
It is widely available in grocery stores & online. Even some WalMart stores carry it. Read the label before using if you have allergies - it is not in front of me right now, but as I recall, on of the herbs is something my brother is allergic to, so he cannot use it.
By the way, if you are on antibiotics and suffer from nausea, they also have a ginger tea that is helpful. We keep both on the shelf here.
Sue

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kathyhg | @kathyhg | Aug 7, 2020

Thanks; I’ll check it out.

I’m not on antibiotics because of side effects and have been controlling (and reducing) my symptoms with 7% saline nebulizing 2/day, diet, exercises, mindfulness (which I think helps), etc. Nausea was a frequent problem in my early Mac days and periodically comes back so I keep fresh ginger as well as Gravol ginger in the house for bad days.

Another plug for 7% saline - my sputum came back at 4+ after 6 months on the big 3 and has gradually moved down to 1+ and even negative on my last sputum test,

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1 reply
ckscoville | @ckscoville | Aug 7, 2020
In reply to @windwalker "Hello @ckscoville. I had that cough that comes with infections for many, many years. Nebulizing 7%..." + (show)
@windwalker

Hello @ckscoville. I had that cough that comes with infections for many, many years. Nebulizing 7% saline, sipping 'Breathe Easy' tea, and finally getting the right antibiotics that killed the infection is what got me through it. After coughing constantly for 8 yrs, I finally got it gone in 2016. I didn't think it was possible to ever get rid of it, but it is now gone. You must be diligent with your health routine and learn all that you can. Knowledge is power! If you want to get started on the nebulized saline, is it possible for you to call your dr's office and request a prescription for it?

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Thanks very much for the recommendations. Actually my Infectious Disease doctor had suggested a change to 7% saline in my nebulizer (from 3%), but my Pulmonary doctor at Mayo wanted to keep it at 3%, saying that he typically only prescribed 7% for Cystic Fibrosis patients.

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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 8, 2020
In reply to @ckscoville "Thanks very much for the recommendations. Actually my Infectious Disease doctor had suggested a change to..." + (show)
@ckscoville

Thanks very much for the recommendations. Actually my Infectious Disease doctor had suggested a change to 7% saline in my nebulizer (from 3%), but my Pulmonary doctor at Mayo wanted to keep it at 3%, saying that he typically only prescribed 7% for Cystic Fibrosis patients.

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@ckscoville Here is a link you might like to share that talks about the use of higher percentage saline in non-CF patients, and the potential effect on MAC https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6688147/

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