(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.

cila | @cila | Jul 16, 2017

Thanks Terri, I will check it on google or ask the pharmacist. They said on the packet is coughing is one of the side effect. Cila.

cila | @cila | Jul 16, 2017

In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)

Hi tdrell, when you saw Dr. Huitt how many days is your appt. at NJH? I have an appt. on the sept. 20-29 did you stay there that long? I'm a little bit nervous b/c is out of my state. I don't know what to expect. Thanks! Cila.

Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017

In reply to @cila "Thanks Terri, I will check it on google or ask the pharmacist. They said on the..." + (show)

@cila Cila,
whenever I take my first few puffs of my inhaled tobramycin, it always starts my
into a coughing spell. But, it usually subsides after a few minutes.

Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017

In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)

@cila Cila,
was it hard to get an appt at NJH? If they have openings close to the time you
are going, you can ask if they can schedule your appts closer together to make
it fewer days that you are there. When I went to the Mayo for the first time to
get lots of testing, I think it took only 4 full days. It took me two weeks of
testing to go through the pre-qualifying tests for a lung transplant. I have
called Mayo in the past and asked them if they could condense my appts so that I
am not paying for so many hotel nights. The schedulers don't always think about
the fact that you are coming from out of town. They are usually happy to oblige
if they are not slammed patients and that is the only openings they have. Big
rule of thumb when dealing with medical is 'It never hurts to ask'.

heathert | @heathert | Jul 16, 2017

In reply to @cila "Hi Catherine, when you inhale amikacin did you do coughing while your inhaling it? Also my..." + (show)

Hi @cilla, I am on inhaled Amakacin and yes I did cough when inhaling at first, just have a sip of water. I also lost my voice, my doc said to have a few days off the Amakacin then try again, washing your mouth out with water after the Amakacin and also have a Strepfen (strepsil with iboprofen) after the amakacin , it worked reallty well. It will get easier in time. The Amakacin has got rid of alot of my MAC so far, so worth persisting.

heathert | @heathert | Jul 16, 2017

In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)

Hi @tdrell I have had carpet tunnel operations on both wrists, so if you have any questions , dont hesitate to ask.

Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017

In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)

@tdrell Terri, of the 22 people that I have written down to keep track of
on this forum, 6 were nurses, 3 were teachers, 13 unknown professions. I feel
like there have been other teachers and nurses post on this forum, but I have
not written them into my book. I am seeing a pattern though, a lot of people
with MAC have worked in a facility where they would come into contact with lots
of other people, many of them being sick. It is years of exposure to patients,
and kids coming to school with colds, flues, and who knows what else. I have a
theory, that these institutions have stringent janitorial guidelines and have
used some pretty strong cleaning agents and that perhaps that caused some
strains of resistant MAC - a stronger MAC. Follow me? I am not writing this to
get anybody stirred up, I just have an analytical mind. I may ask the NTM
Foundation if they are interested in these statistics. But, I have a feeling
they are probably already aware.

Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017

In reply to @cila "Hi Catherine, when you inhale amikacin did you do coughing while your inhaling it? Also my..." + (show)

@heathert Heather, thank you for that suggestion of 'Strepfen', that is
good to know. -Terri M.

Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017

In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)

@heathert Heather,
did you get your carpel tunnel from your profession? I started to get it in my
right hand from my job as an electrical systems designer. I'd spend 10 hrs a day
drafting on the computer. I went on disability right at the time that I started
to develop the C.T. It took yrs for my hand and wrist to stop hurting.

Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017

In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)

@tdrell Terri,
I caught my MAC in Tucson, I lived there for 20 yrs. Arizona is one of the five
HOT SPOTS in our country for MAC.

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