Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
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!
KateMN
@dglaude Could you give me an update on how you are doing now and about your treatment journey. I have been recently diagnosed with MAC and will be starting my antibiotic regime this month. I’ve read a lot and am scared. Any thoughts would be appreciated. Thank you. Terrie
I have stopped all.treatment
I feel the side effects are too bad
I tried the BIG 3 and the doctor wanted me to.start me on the Akyrace inhaler
Too hard on my body
My hearing is constant in my right ear from the BIG 3, next would have been my eye sigh
I have said no and feel fine for now
I wish you good luck in your decision
boomerexpert
@boomerexpert
@boomerexpert
Posts: 494
Joined: May 13, 2016
@dglaude First, welcome to this supportive, informative group. I've learned much here, and recommend you do the same. Do a keyword search for posts about alternative treatments to the "big 3" as many knowledgeable docs are now avoiding that old school treatment protocol…some of us have been on just one antibiotic, others have rotated, others have been on inhaled Amikicin (sp)… first, make sure your doc cultured your MAC specimen taken during your bronchoscopy to determine the right antibiotic to use on your particular strain.
Liked by Colleen Young, Connect Director
janovr
@janovr
@janovr
Posts: 110
Joined: Feb 12, 2016
@dglaude Could you give me an update on how you are doing now and about your treatment journey. I have been recently diagnosed with MAC and will be starting my antibiotic regime this month. I’ve read a lot and am scared. Any thoughts would be appreciated. Thank you. Terrie
@dglaude
I was Dx in 2015 after 3 bouts of pneumonia in a 12 month period. My doctor at the time prescribed the BIG 3 after only 1 sputum culture.( A BIG NO NO) You need 3! I have the nodular MAC due to GERD aspiration!
Long story short, my body could not tolerate meds, lost 40 lbs. in 3 months. 😩I was already thin. Changed doctors. New doctor said for me the cure was worse than the disease. He prescribed pulmonary rehab and I have built up my 02, gained
back 20 lbs. and have great energy.
Every person is different but attitude and gratitude make a big difference in your overall health. When you read posts you will notice how some do EVERYTHING and others are not quite as vigilant. I refuse to allow this Dx to rule my life. I do not cough, cannot produce sputum, and overall as my 2nd dr said…”You will die WITH MAC BUT NOT FROM MAC.”
God bless!
Liked by Colleen Young, Connect Director, Margie E, anniepie
@boomerexpert @dglaude First, welcome to this supportive, informative group. I've learned much here, and recommend you do the same. Do a keyword search for posts about alternative treatments to the "big 3" as many knowledgeable docs are now avoiding that old school treatment protocol…some of us have been on just one antibiotic, others have rotated, others have been on inhaled Amikicin (sp)… first, make sure your doc cultured your MAC specimen taken during your bronchoscopy to determine the right antibiotic to use on your particular strain.
Was in to see my doctor yesterday, glad to say my culture shows no growth after 8 weeks. Have been on the Big 3, but “I” stopped that three weeks ago. They were setting up the Akylas inhaler which I turned down before the culture came back. I feel much better and have prayed many times and give God the glory. Good luck to all.
america
@america
@america
Posts: 132
Joined: Jun 26, 2018
@summer33 Was in to see my doctor yesterday, glad to say my culture shows no growth after 8 weeks. Have been on the Big 3, but “I” stopped that three weeks ago. They were setting up the Akylas inhaler which I turned down before the culture came back. I feel much better and have prayed many times and give God the glory. Good luck to all.
I’m so excited for you! God is good. Hugs to you.
heathert
@heathert
@heathert
Posts: 540
Joined: Mar 07, 2016
ellen123
@ellen123
@ellen123
Posts: 1
Joined: May 09, 2018
Jo Ann K
@jkiemen
@jkiemen
Posts: 429
Joined: Jun 23, 2017
@dglaude Could you give me an update on how you are doing now and about your treatment journey. I have been recently diagnosed with MAC and will be starting my antibiotic regime this month. I’ve read a lot and am scared. Any thoughts would be appreciated. Thank you. Terrie
@dglaude I have been on the BIG 3 since November 2017. I have not had too much trouble with them. I take them on an empty stomach. One hour at least (usually more) before meals and at least but usually more than 2 hours after a meal. I plan to stay on until June 2019 when my 18 months will be completed and depending on how my next CT looks.
Jo Ann K
@jkiemen
@jkiemen
Posts: 429
Joined: Jun 23, 2017
Margie E
@margiebanks
@margiebanks
Posts: 68
Joined: Aug 19, 2018
@summer33 Was in to see my doctor yesterday, glad to say my culture shows no growth after 8 weeks. Have been on the Big 3, but “I” stopped that three weeks ago. They were setting up the Akylas inhaler which I turned down before the culture came back. I feel much better and have prayed many times and give God the glory. Good luck to all.
Happy for you!! May you continue to have good health!
migizii
@migizii
@migizii
Posts: 106
Joined: Oct 21, 2018
@heathert Hi ahttps://www.brit-thoracic.org.uk/document-library/clinical-information/bronchiectasis/bts-guideline-for-bronchiectasis-in-adults/ll this the new 2018 bris thoracic guidelines on Bronchieacatasis, I think the last one was done in 2010.
Although it took a long time to read, it was very interesting! Thanks for posting!
Liked by heathert
heathert
@heathert
@heathert
Posts: 540
Joined: Mar 07, 2016
heathert
@heathert
@heathert
Posts: 540
Joined: Mar 07, 2016
Hi all some more news on Bronch drug https://bronchiectasisnewstoday.com/2019/01/02/apulmiq-benefits-bronchiectasis-patients-confirmed-third-party-evaluation/?utm_source=BRO+E-mail+List&utm_campaign=08898fba1c-RSS_WEEKLY_EMAIL_CAMPAIGN_US_NON-US&utm_medium=email&utm_term=0_d9df0e1c03-08898fba1c-71482021
Liked by Margie E
Margie E
@margiebanks
@margiebanks
Posts: 68
Joined: Aug 19, 2018
@heathert Hi all some more news on Bronch drug https://bronchiectasisnewstoday.com/2019/01/02/apulmiq-benefits-bronchiectasis-patients-confirmed-third-party-evaluation/?utm_source=BRO+E-mail+List&utm_campaign=08898fba1c-RSS_WEEKLY_EMAIL_CAMPAIGN_US_NON-US&utm_medium=email&utm_term=0_d9df0e1c03-08898fba1c-71482021
@heathert Thanks for sharing, its very encouraging!
Liked by heathert
@dglaude
Could you give me an update on how you are doing now and about your treatment journey. I have been recently diagnosed with MAC and will be starting my antibiotic regime this month. I’ve read a lot and am scared. Any thoughts would be appreciated. Thank you. Terrie
Liked by Colleen Young, Connect Director