(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!

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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:

  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

@dpselmark

Interesting for at NJH they advised not using Nebulizer except with two-3 hours after eating. My routine is to use before breakfast and early evening before dinner. Their recommendations are based on danger of food aspirations.

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@migizii in reply to hauoli……these are the same directions I was given by my pulmonologist from Mayo, Rochester.

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@dpselmark

For me going to NJH was a terrific decision. What we deal with…MAC+other bacteria that come amd visit plus bronchial issues are rare for doctors I have visited with in San Antonio. I did not want a doctor who only see MAC patients a few a year…I wanted advice from someone who saw patients like me all day every day. Well worth it. They now work with my local doctors as a team!

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Thanks Dianne, that would be worth going to NJH if they would work with my pulmonologist here in HI. Ill give it some serious thought. I took your advice and nebulize before eating or 3 hrs later and it does seem to make a slight difference. Grateful for your sharing

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@hauoli

Thanks Dianne, that would be worth going to NJH if they would work with my pulmonologist here in HI. Ill give it some serious thought. I took your advice and nebulize before eating or 3 hrs later and it does seem to make a slight difference. Grateful for your sharing

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Terrific! I am so happy it was helpful!

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Interesting about Bronchiectasis. Mayo previously (a few years ago) was saying that "Chronic Bronchiectasis is a diagnostic certainty of Amyloidosis, particularly Gelsolin". Now, I have CB, and I also have been dX with Gelsolin, as well as FKTN, Walker-Warburg, and others. Now I spend a lot of time in my old age trying to keep up with my genetic scabs.

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My wife just received her Nebulizer and AFFLOVEST and I am wondering whether there is anyone else is using this combination to fight their MAC and Bronchiectasis. What type of scheduling you use for your treatments. It was recommended my wife to do both treatments, Nebulizering and Vest twice per day. We are thinking about doing them both at the same time…

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@migizii

@migizii in reply to hauoli……these are the same directions I was given by my pulmonologist from Mayo, Rochester.

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thanks Migizii. Mayo and NJH are the best!

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@spencersok

My wife just received her Nebulizer and AFFLOVEST and I am wondering whether there is anyone else is using this combination to fight their MAC and Bronchiectasis. What type of scheduling you use for your treatments. It was recommended my wife to do both treatments, Nebulizering and Vest twice per day. We are thinking about doing them both at the same time…

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In response to spencersok…..@migizii…this is what I do daily as directed by my pulmonologist but I have not had MAC yet and am very thankful. Perhaps this regimen will work to alleviate your wife’s symptoms and I do the treatments at the same time (2x daily).😊🙏🏽

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@spencersok

My wife just received her Nebulizer and AFFLOVEST and I am wondering whether there is anyone else is using this combination to fight their MAC and Bronchiectasis. What type of scheduling you use for your treatments. It was recommended my wife to do both treatments, Nebulizering and Vest twice per day. We are thinking about doing them both at the same time…

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I have active MAC and Bronchiectasis currently on meds, big 3 plus clofazamine. I use inhaler, nebulizer and then the vest 2 times daily. First, as soon as I wake up, and second late afternoon before dinner. That has worked for me. I will continue this even after Mac is no longer present .

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@spencersok

My wife just received her Nebulizer and AFFLOVEST and I am wondering whether there is anyone else is using this combination to fight their MAC and Bronchiectasis. What type of scheduling you use for your treatments. It was recommended my wife to do both treatments, Nebulizering and Vest twice per day. We are thinking about doing them both at the same time…

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I use my nebulizer and vest at the same time twice daily. The respiratory therapist had said it was perfectly fine and I think I get my best results when using them together. Good luck!

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@sueinmn

I use 7% and an inhaler. Has kept my MAC from flaring for 16 months since I stopped antibiotics due to side effects.
Sue

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Sue @sueinmn very glad to hear this after you stopped the meds. It gives people like me a possible alternative for the future — if I can't handle the side effects anymore.
I can't seem to get 7% saline in Australia but could import it from the US.
Just wondering — do you know if there are any issues with inhaling higher dose/7% saline every day and taking high blood pressure meds?

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@anniepie

Sue @sueinmn very glad to hear this after you stopped the meds. It gives people like me a possible alternative for the future — if I can't handle the side effects anymore.
I can't seem to get 7% saline in Australia but could import it from the US.
Just wondering — do you know if there are any issues with inhaling higher dose/7% saline every day and taking high blood pressure meds?

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Not that I am aware – it doesn't seem to have any effect on my BP (which is borderline.) Neither my primary nor my pulmo seem concerned about it either.
Sue

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@anniepie

Sue @sueinmn very glad to hear this after you stopped the meds. It gives people like me a possible alternative for the future — if I can't handle the side effects anymore.
I can't seem to get 7% saline in Australia but could import it from the US.
Just wondering — do you know if there are any issues with inhaling higher dose/7% saline every day and taking high blood pressure meds?

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An open question to anyone who has been on Clofazimine meds for MAC/MAI: Did you ever get permanent grey/black/brown staining of your teeth?
What did you do about it?
(PS. It seems to permanently stain false teeth or crowns too, as well as real teeth).

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