(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.

irene5 Irene Estes | @irene5 | Jul 4, 2017

In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)

I am sooo sorry Cindy. I am fortunate or unfortunate depending upon how you look at it to have retired from teaching in 2014. I didn't really want to but just couldn't go on feeling so exhausted and losing weight just breathing. It was soon afterwards I was diagnosed with MAC/MAI and bronchiectasis. I so could not work on these meds Cindy. I am sorry I am no help. Bananas? Rice? Won't your doctor prescribe an antispasmodic or something? What does he/she say about it? I am so sorry.

Cindy Courtney | @cindyrnc | Jul 4, 2017

In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)

I haven't told the pulmonologist yet but I probably need to. I didn't take the Zithromax while on vacation due to not wanting the diarrhea and as soon as I took it when I got home I had the GI effects. From different posts I've seen on this site I guess I'm pretty fortunate. My bronchiectasis isn't that bad yet. I've gained weight instead of losing and I really don't have many pulmonary problems except for occasional wheezing and the thick mucous plugs. I hope you are doing ok. I'm wondering how long I can last at work. I just turned 64 and I need the insurance for my Humira for my RA. Thanks for the support.

Cindy

Cindy Courtney | @cindyrnc | Jul 4, 2017

In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)

Thanks Linda. Maybe I'll try the Digestive advantage. Azithromycin is the same as Zithomax. Do you take everyday? I take 500 mg three times a week with low dose prednisone.

Cindy

Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2017

In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)

@cindyrnc Hi
Cindy. My dr at Mayo said Zithromax should be a last resort drug because they
consider it a BIG GUN. MAC can become resistant to it, and if it does, there is
not much stronger out there to fall back on. I used to get that prescribed all
of the time in the past whenever I had any kind of infection. I was never tested
for what kind of infection I had, just put on a z-pack. My dr said said that is
a dangerous road to go down. That is a fairly well tolerated drug. If it is
giving you diarrhea, then you should not be taking it.

Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2017

In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)

@cindyrnc Wow, I am amazed at the number of people that cannot tolerate
zithromax. It does not affect me at all. My current Mayo doc will not prescribe
that antibiotic because he considers it a big gun and wants to save it as a last
resort. Are you all on it because nothing else will work?

Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2017

In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)

@cindyrnc You
can ask your dr about alternative antibiotics.

Cindy Courtney | @cindyrnc | Jul 4, 2017

In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)

Thanks. I do know that MAC is related to Tuberculosis and the 3 antituberculin drugs are Zithromax, Rifampin, and Ethambicol.

Cindy

irene5 Irene Estes | @irene5 | Jul 4, 2017

In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)

As far as I know Cindy it is the alternate med in the big three regimen for people who can not tolerate clarithromycin. .

Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2017

In reply to @unicorn "Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably..." + (show)

@irene5 Hi
Irene. I am just catching up on old posts. Are you still feeling like you have
very little quality of life? I am concerned about you. - Terri M.

lindam272 | @lindam272 | Jul 4, 2017

In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)

Cindy, I take a 250mg every day along with Rifampin and Ethambutol. I was started out on those 3 in December/Jan, giving it about 10 days in between meds as I began them. Linda M

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