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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 22, 2020
In reply to @poodledoc "Terri can you give us some information on this new drug Glatiramer. I can only find..." + (show)
@poodledoc

Terri can you give us some information on this new drug Glatiramer. I can only find where it is used for MS patients. Thanks

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@poodledoc, @megan123 and @kathyhg Here is the link for GLATIRAMER ACETATE to combine with tobramycin for extra difficult to treat pseudomonas. https://cysticfibrosisnewstoday.com/2018/06/13/ecfs2018-multiple-sclerosis-treatment-glatiramer-acetate-aids-antibiotic-in-killing-pseudomonas-aeruginosa-strains/

REPLY
toni1132 | @toni1132 | Jul 12, 2020
In reply to @sueinmn "@kathyhg I'm not sure which comes first - the MAC or the inflammation - but they..." + (show)
@sueinmn

@kathyhg I'm not sure which comes first - the MAC or the inflammation - but they sure seem to go together. My primary doc urges me to keep taking localized meds that reduce inflammation, like the steroid nasal spray, instead of systemic NSAIDs like ibuprofen, or oral steroids, because keeping inflammation down helps ALL parts of the body. When I get an asthma flare, my arthritis gets much worse, and vice versa.

As far as sinus/ear congestion, consider asking your ENT about routine use of guaifenesin (Mucinex) - I have had chronic ear problems my entire life, and as long as I take it regularly I get by with maybe only one ear or sinus infection per year, usually after a cold. At one point I had 11 ear and/or sinus infections in 2 years and seemed to be on antibiotics constantly; I have taken it for 30 years now with no ill effects.
I wish the homeopathic anti-inflammatories would work for me, but I haven't found one yet that I could tolerate and it helped.
Let us know if it helps you.
Sue

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I take Mucinex every single day. It makes a big difference in thinning the phlegm . Also, I use cucurmin and/or tumeric to help inflammination. My grandmother ( who was in the medical field ) swore by it. Make sure it's combined with black pepper which "carries" the tumeric into your system,

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ckscoville | @ckscoville | Jul 20, 2020
In reply to @pamelasc1 "The prednisone really did not make a dent on my breathlessness but glad I tried it,..." + (show)
@pamelasc1

The prednisone really did not make a dent on my breathlessness but glad I tried it, as it is supposed to reduce inflammation. I did send in a sputum sample last week and just today got the news that I have a bacteria called "Achromobacter". This may very well be the culprit. Has anyone out there been diagnosed with this? The best drug to treat this is Bactrim from what I understand. If anyone has anything to offer in the way of experience or information on this bacteria, please let me know. Thanks, Pam

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In addition to my bronchiectasis, I've got the same infection -- Achromobacter -- and I've had it for over a year now. My infectious disease doctor at Mayo told me at one point that I may never get totally rid of it ...very hard to kill. She has me n a rotation of different antibiotics, a different one each month for the first 10 days of the month.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 20, 2020

@ckscoville Welcome to Mayo Connect - I'm glad you were able to respond to Pamela - of all the infections I have had with bronchiectasis, that is one that never showed up, so I wasn't any help. Does the Achromobacter cause you any symptoms? I'm glad you are being seen at Mayo - if anyone can find the solution, it is their team.
Sue

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2 replies
ckscoville | @ckscoville | Jul 20, 2020
In reply to @sueinmn "@ckscoville Welcome to Mayo Connect - I'm glad you were able to respond to Pamela -..." + (show)
@sueinmn

@ckscoville Welcome to Mayo Connect - I'm glad you were able to respond to Pamela - of all the infections I have had with bronchiectasis, that is one that never showed up, so I wasn't any help. Does the Achromobacter cause you any symptoms? I'm glad you are being seen at Mayo - if anyone can find the solution, it is their team.
Sue

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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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3 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 20, 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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@ckscoville We here all understand! Have you ever tried Mucinex (long-acting guaifenesin) to help thin the mucus? Several of us do, and it really seems to help with consistent twice a day use Another thing that helps is nebulizing with saline solution in addition to any bronchodilator you might use. Again it helps thin the mucus. For those of us with MAC, 7% also seems to help keep the infection under control. I'm not sure if it would help with your infection, but it may at least ease your coughing.
Sue

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ckscoville | @ckscoville | Aug 1, 2020
In reply to @sueinmn "@ckscoville Welcome to Mayo Connect - I'm glad you were able to respond to Pamela -..." + (show)
@sueinmn

@ckscoville Welcome to Mayo Connect - I'm glad you were able to respond to Pamela - of all the infections I have had with bronchiectasis, that is one that never showed up, so I wasn't any help. Does the Achromobacter cause you any symptoms? I'm glad you are being seen at Mayo - if anyone can find the solution, it is their team.
Sue

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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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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 1, 2020

@ckscoville I think in you shoes, I would address the issue of thick mucus with my ID doc through the patient portal and not wait another month for my appointment. There must be some way to thin the mucus so you can be more comfortable. Just my opinion.
Sie

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1 reply
lindam272 | @lindam272 | Aug 1, 2020
In reply to @sueinmn "@ckscoville I think in you shoes, I would address the issue of thick mucus with my..." + (show)
@sueinmn

@ckscoville I think in you shoes, I would address the issue of thick mucus with my ID doc through the patient portal and not wait another month for my appointment. There must be some way to thin the mucus so you can be more comfortable. Just my opinion.
Sie

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@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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1 reply
joann | @joanng | Aug 1, 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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I use mucinex twice daily 2 tabs each dose.
My partner has an inversion table for his back he puts me on it and tips me on an incline so the gravity helps move the mucus making it much easier to get it out especially when it’s thick n sticky. Yes gross but it helps.

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