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.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Sep 30, 2018
In reply to @beegee "Diagnosed in 2010. On meds for over 2 yrs. Sputum still shows MAC an have continuous..." + (show)
@beegee

Diagnosed in 2010. On meds for over 2 yrs. Sputum still shows MAC an have continuous cough an Hugh amts. Of mucus that I try hard to keep coughing up. Also get SOB an use oxygen. I take 250 mg. Zithromycin daily. Also on Gammagard IV to raise immunity.as.have pneumonia 4 times. I am. 82 an guess lucky lived this.long.Some days really tough. Hope they find a cure for this.Never smoked but exposed to secondary smoke for 18 yes.

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Hi @beegee,

You’ve come to the right place to talk, share and get support from members who understand what you are going through – welcome. I'm certain that @windwalker @boomerexpert and others in this incredible group will join in with their insights and experiences.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 30, 2018
In reply to @beegee "Diagnosed in 2010. On meds for over 2 yrs. Sputum still shows MAC an have continuous..." + (show)
@beegee

Diagnosed in 2010. On meds for over 2 yrs. Sputum still shows MAC an have continuous cough an Hugh amts. Of mucus that I try hard to keep coughing up. Also get SOB an use oxygen. I take 250 mg. Zithromycin daily. Also on Gammagard IV to raise immunity.as.have pneumonia 4 times. I am. 82 an guess lucky lived this.long.Some days really tough. Hope they find a cure for this.Never smoked but exposed to secondary smoke for 18 yes.

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@beegee Hi there. It is nice hearing from you. I am sorry that you are having such a tough time of it right now. I know that all of that coughing and congestion is miserable. I went through years of it myself. If you don't mind my asking; do you know what kind of mac you have? When was your last sputem test?

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america | @america | Oct 1, 2018

Good morning everyone! I have gained 6 lbs. and my coughing has become less and less every day!!! I am just excited to see what’s ahead!

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2 replies
irene5 Irene Estes | @irene5 | Oct 1, 2018
In reply to @america "Good morning everyone! I have gained 6 lbs. and my coughing has become less and less..." + (show)
@america

Good morning everyone! I have gained 6 lbs. and my coughing has become less and less every day!!! I am just excited to see what’s ahead!

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That is wonderful news! Yay!

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1 reply
egayle187 | @egayle187 | Oct 1, 2018
In reply to @beegee "Diagnosed in 2010. On meds for over 2 yrs. Sputum still shows MAC an have continuous..." + (show)
@beegee

Diagnosed in 2010. On meds for over 2 yrs. Sputum still shows MAC an have continuous cough an Hugh amts. Of mucus that I try hard to keep coughing up. Also get SOB an use oxygen. I take 250 mg. Zithromycin daily. Also on Gammagard IV to raise immunity.as.have pneumonia 4 times. I am. 82 an guess lucky lived this.long.Some days really tough. Hope they find a cure for this.Never smoked but exposed to secondary smoke for 18 yes.

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@beegee..I want you to know there is hope for relief from the constant coughing. Many members will have suggestions, but I found relief by sleeping upright so acid did not enter my lungs. A low acid diet, postural drainage, and acupuncture to calm my coughing nerves have helped me get off oxygen and keep the damage isolated to one lobe. Do you have bronchiectisis and do you know where your damage is located?

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 1, 2018
In reply to @america "Good morning everyone! I have gained 6 lbs. and my coughing has become less and less..." + (show)
@america

Good morning everyone! I have gained 6 lbs. and my coughing has become less and less every day!!! I am just excited to see what’s ahead!

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@america 6 lbs, Woo Hoo!! That means that bug is getting stomped down!! Doing my happy dance for you!

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1 reply
boomerexpert | @boomerexpert | Oct 1, 2018
In reply to @egayle187 "@beegee..I want you to know there is hope for relief from the constant coughing. Many members..." + (show)
@egayle187

@beegee..I want you to know there is hope for relief from the constant coughing. Many members will have suggestions, but I found relief by sleeping upright so acid did not enter my lungs. A low acid diet, postural drainage, and acupuncture to calm my coughing nerves have helped me get off oxygen and keep the damage isolated to one lobe. Do you have bronchiectisis and do you know where your damage is located?

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This is why I use an adjustable bed...helps both my lungs and my RA

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2 replies
america | @america | Oct 1, 2018
In reply to @boomerexpert "This is why I use an adjustable bed...helps both my lungs and my RA" + (show)
@boomerexpert

This is why I use an adjustable bed...helps both my lungs and my RA

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Thanks boomerexpert and windwalker!! I am on a road to getting better and there’s no stopping now. Be encouraged all! We all have hope and this group of friends makes a big difference. Hugs.

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margaretg | @margaretg | Oct 5, 2018
In reply to @colleenyoung "Check out today's member spotlight. It features the incredible @windwalker. I love the title and think..." + (show)
@colleenyoung

Check out today's member spotlight. It features the incredible @windwalker. I love the title and think it is so apt for our Terri!

A Breath of Fresh Air: Meet @windwalker https://connect.mayoclinic.org/page/about-connect/newsfeed/a-breath-of-fresh-air-meet-windwalker/

Follow the About Connect page to read all the Member Spotlights: https://connect.mayoclinic.org/page/about-connect/

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Hi Colleen,
I haven’t received emails from the forum since Monday of this week.
Could you please check it for me?

Thank you so much.

Margaret

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