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(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.

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summer33 | @summer33 | Jan 3, 2019
In reply to @boomerexpert "@dglaude First, welcome to this supportive, informative group. I've learned much here, and recommend you do..." + (show)
Profile picture for boomerexpert @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.

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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.

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america | @america | Jan 3, 2019
In reply to @summer33 "Was in to see my doctor yesterday, glad to say my culture shows no growth after..." + (show)
Profile picture for summer33 @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.

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I’m so excited for you! God is good. Hugs to you.

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heathert | @heathert | Jan 3, 2019

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.

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ellen123 | @ellen123 | Jan 4, 2019

Very interesting,for the first time I am able to understand Bronchiectasis and it’s relationship with Mac and Gerd.

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Jo Ann K | @jkiemen | Jan 4, 2019
In reply to @dglaude "Could you give me an update on how you are doing now and about your treatment..." + (show)
Profile picture for dglaude @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

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@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.

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Jo Ann K | @jkiemen | Jan 4, 2019

@dglaude I forgot to mention. I take Jarrow's Plus Probiotic and yogurt every day.

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Margie E | @margiebanks | Jan 4, 2019
In reply to @summer33 "Was in to see my doctor yesterday, glad to say my culture shows no growth after..." + (show)
Profile picture for summer33 @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.

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Happy for you!! May you continue to have good health!

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migizii | @migizii | Jan 4, 2019
In reply to @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..." + (show)
Profile picture for heathert @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.

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Although it took a long time to read, it was very interesting! Thanks for posting!

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heathert | @heathert | Jan 5, 2019
In reply to @migizii "Although it took a long time to read, it was very interesting! Thanks for posting!" + (show)
Profile picture for migizii @migizii

Although it took a long time to read, it was very interesting! Thanks for posting!

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@migizii Yes it is very long, you did well, I havnt read it all yet.

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