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.

lindam272 | @lindam272 | Jun 1, 2020
In reply to @lorifilipek "@lindam272 Thanks! I did some searching. Microbion suggests it will help those with MAC, as well:..." + (show)
@lorifilipek

@lindam272 Thanks! I did some searching. Microbion suggests it will help those with MAC, as well: "In addition to CF-related lung infection, there are multiple lower respiratory tract infections and conditions where the presence of microbial pathogens and their associated biofilm contribute to lung function decline. Infectious pathogens such as Pseudomonas spp., Staphylococcus spp., Streptococcus spp., Mycobacterium spp., or Haemophilus spp. may contribute to lung diseases such as non-CF bronchiectasis, bronchitis, community- or ventilator-associated pneumonia, non-tuberculous mycobacterium infection, etc., that are expected to benefit from an inhaled application of pravibismane or other Microbion compounds." https://microbioncorp.com/pipeline/respiratory

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@lorifilipek Thanks for the follow up info! Linda

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heathert | @heathert | Jun 1, 2020
In reply to @lorifilipek "@lindam272 Thanks! I did some searching. Microbion suggests it will help those with MAC, as well:..." + (show)
@lorifilipek

@lindam272 Thanks! I did some searching. Microbion suggests it will help those with MAC, as well: "In addition to CF-related lung infection, there are multiple lower respiratory tract infections and conditions where the presence of microbial pathogens and their associated biofilm contribute to lung function decline. Infectious pathogens such as Pseudomonas spp., Staphylococcus spp., Streptococcus spp., Mycobacterium spp., or Haemophilus spp. may contribute to lung diseases such as non-CF bronchiectasis, bronchitis, community- or ventilator-associated pneumonia, non-tuberculous mycobacterium infection, etc., that are expected to benefit from an inhaled application of pravibismane or other Microbion compounds." https://microbioncorp.com/pipeline/respiratory

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@lorifilipek Thanks for that info, I have subscribed to them. Fingers crossed for all of us.

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Flib | @flib | Jun 3, 2020
In reply to @Paula_MAC2007 "Hello BLC and Maryke and Jill, I was diagnosed with MAC about 7 years ago.- also..." + (show)
@Paula_MAC2007

Hello BLC and Maryke and Jill,

I was diagnosed with MAC about 7 years ago.- also known as NTM for Nontuberculous Mycobacteria - see info here: http://www.nationaljewish.org/healthinfo/conditions/ntm/
(I'm not Jewish but this is a good site.) See my post above from March 2013.

I am on the regime of the standard 3 antibiotics. Originally I took the drugs EVERYDAY and I barely tolerated them. Was nauseated, occasionally throwing up, lethargic. My pulmonologist told me about several of his patients with MAC and what they do to overcome the side effects of the drugs. He told me to 'find what works for me', to feel better on the drugs. I tried taking them at night, or in the morning, after eating, before eating -- lots of different things. Taking them 1-2 hours before I went to bed, after eating, seemed to help the nausea. After 18 months, I got a new fabulous pulmonologist - an expert on MAC. I gradually felt better. After 3 years, I was going out of the country and negotiated with my doc about going off the drugs, which I did. But after 6 months I was really ill again. Was put back on the drugs but this time taking them only 3 days/week. Been doing it ever since with little side effects. I take them with orange juice when I get up in the morning, and tolerate this just fine now compared to taking them every day! For me, I'll most probably be taking them for the rest of my life. I've had 2 lung biopsies and one lung lavage (wash) over the past 7 years, to see if things have spread.

Besides the drugs,MY DOCTOR RECOMMENDED SEVERAL OTHER THINGS I need to do to help myself feel better. (1) Get some form of exercise to get my lungs expanding -- Yoga or strenuous walking or Pilates, etc. I tried Pilates after being diagnosed seven years ago and have been doing it 2-3 times a week since. This definitely gets my lungs expanding, as I cough when doing Pilates - which is a good thing! I also get out and briskly walk when I can. (2) Plenty of rest -- getting warn down is really easy with this disease. And getting enough rest (whether it's being asleep or merely resting) is important. (3) Get enough Vitamin D, since there is a connection with this and MAC - doctors don't yet know what the connection is.

Also, have your eyes examined early by a very good ophthalmologist. One of the drugs can drastically affect your vision. And have your blood checked regularly, per your doctors orders, since your body is filtering these drugs which can cause liver or kidney issues.

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Also have hears checked. I lost quite a bit of hearing

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anniepie | @anniepie | Jun 4, 2020
In reply to @lorifilipek "@lindam272 Thanks! I did some searching. Microbion suggests it will help those with MAC, as well:..." + (show)
@lorifilipek

@lindam272 Thanks! I did some searching. Microbion suggests it will help those with MAC, as well: "In addition to CF-related lung infection, there are multiple lower respiratory tract infections and conditions where the presence of microbial pathogens and their associated biofilm contribute to lung function decline. Infectious pathogens such as Pseudomonas spp., Staphylococcus spp., Streptococcus spp., Mycobacterium spp., or Haemophilus spp. may contribute to lung diseases such as non-CF bronchiectasis, bronchitis, community- or ventilator-associated pneumonia, non-tuberculous mycobacterium infection, etc., that are expected to benefit from an inhaled application of pravibismane or other Microbion compounds." https://microbioncorp.com/pipeline/respiratory

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Thanks very much for this info Linda and Lori @lindam272 @lorifilipek

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lindam272 | @lindam272 | Jun 4, 2020

@lorifilipek - Of course! I talked to my CF doctor yesterday on our teleconference call and mentioned this to him. This is not yet FDA approved but has been given orphan status so that it can be fast-tracked for development. Still encouraging!

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heathert | @heathert | Jun 12, 2020

Hi all, just wanted to bring up having 1 CF gene with MAC]MAI, it was bought up years ago on here and sure enough I had a test for the CF gene after getting MAI and returned positive for 1 CF gene which could be why I was susceptible. Now there is a treatment called Ttrikafta which sounds fantastic, it counteracts that nasty CF gene, my daughter has just been to a seminar on it at the hosp and was impressed.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 14, 2020
In reply to @heathert "Hi all, just wanted to bring up having 1 CF gene with MAC]MAI, it was bought..." + (show)
@heathert

Hi all, just wanted to bring up having 1 CF gene with MAC]MAI, it was bought up years ago on here and sure enough I had a test for the CF gene after getting MAI and returned positive for 1 CF gene which could be why I was susceptible. Now there is a treatment called Ttrikafta which sounds fantastic, it counteracts that nasty CF gene, my daughter has just been to a seminar on it at the hosp and was impressed.

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Hello Heather! Will you be trying out that new treatment with the Trikafta?

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 14, 2020
In reply to @irene5 "@pamelasc1 I think that should be fine. I had to take prednisone when I got poison..." + (show)
@irene5

@pamelasc1 I think that should be fine. I had to take prednisone when I got poison ivy in my lungs due to our neighbor burning it and my inhaling it. (Talk about bad luck) Prednisone was a godsend for me. Generally, MAC patients don’t take prednisone, but when you need it, you need it! irene5

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Oh dear God Irene!!! You and your lungs have been through way more than your fair share!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 14, 2020
In reply to @lorifilipek "@lindam272 Thanks! I did some searching. Microbion suggests it will help those with MAC, as well:..." + (show)
@lorifilipek

@lindam272 Thanks! I did some searching. Microbion suggests it will help those with MAC, as well: "In addition to CF-related lung infection, there are multiple lower respiratory tract infections and conditions where the presence of microbial pathogens and their associated biofilm contribute to lung function decline. Infectious pathogens such as Pseudomonas spp., Staphylococcus spp., Streptococcus spp., Mycobacterium spp., or Haemophilus spp. may contribute to lung diseases such as non-CF bronchiectasis, bronchitis, community- or ventilator-associated pneumonia, non-tuberculous mycobacterium infection, etc., that are expected to benefit from an inhaled application of pravibismane or other Microbion compounds." https://microbioncorp.com/pipeline/respiratory

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Hi Lori. I love that you enjoy researching things for this group. I read the link from Micrbion and added 'pravibismane' to my list of new meds. I wonder if anybody is using that other recent drug (glatiramer)that held promise for keeping that hard cell wall formation from happening?

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 14, 2020
In reply to @pamelasc1 "Thank you everyone for writing down your experiences with prednisone.. I am hesitant to use it,..." + (show)
@pamelasc1

Thank you everyone for writing down your experiences with prednisone.. I am hesitant to use it, even for two weeks. I might try using my nebulizer with albuterol first and see if that brings any relief. I will let you know. Just want to say what an amazing and supportive group this is and how important you all are to me! Thank you for taking the time to write. Pam

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Hi Pam! What did you think of the prednisone? Did you find that it helped you? I have a bottle of it myself to keep on hand if I feel I ever need to be on it. I use it approx once a year. I love the stuff; too bad it isn't good for us long term. I only stay on it a week, and it gets rid of all inflammation, even my arthritis in my hands. It makes me feel energetic and healthy. Using it short term shouldn't be so disconcerting; it is the long term use that starts to destroy organs like your liver.

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