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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
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@jentaylor,
Hi Jen! Your words gave me goosebumps. I am so happy about your new mind-set
because you are the one I was the most concerned about. No progressive step
forward is too small. I don't know if you saw my post about my last Dr visit
this past Tues; but my lung function improved by 4%. I now have 44% lung
function. My Dr said not to dismiss that small number because 4% in the opposite
direction would mean looking at a lung transplant. When I joined a cardio class
six months ago, I set out to surprise and amaze my Dr. on my next visit. Mission
accomplished! He was admittedly shocked because I have been steadily losing lung
function at every visit for years. This past visit was the first time EVER that
I did not hear "Your lung function has declined a little more." Exercise is key.
The other thing I wanted to mention is ATTITUDE. Girl, it is everything! My Dr.
commented on that too. He told me I was amazing, and that he doesn't see very
many patients with 44% lung function get up and go like I do. For the most part,
I pay no attention to my illnesses except to take care of myself and stay on my
treatment plan. I hope today finds you determined and happy. Many Hugs, Terri
M.
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4 Reactions@jentaylor Jen,
every other month when I am on the Tobramycin, my breathing treatments come to 4
hours a day! (2 hours a day the other off months) It is time consuming, so
I have my nebulizer stationed next to my computer desk. I use my neb time to
answer e-mails and chat with all of you. It makes good use of time.
I told my Dr that the saline treatment wasn't bringing anything up. It is
because my lungs are crystal clear at the moment (another way I shocked my Doc
last Tues). He said it is important to continue the saline anyway. It also acts
as a preventative, it thins the mucous. When the mucous is thin, there is less
thick, sticky stuff for the MAC and other bugs to breed in. Stay the course
Girlfriend! -Terri M.
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1 Reaction@unicorn No Crista, I do not use Albuterol anymore. My Dr replaced it with
Levabuterol, another airway opener. Had to switch because of my heart. The
albuterol would make it race and sometimes it would not stop. Plus it made me so
jittery. I neb the Levabuterol first, then the saline right behind it. I suppose
I could combine the two together and get my treatment done quicker. Will have to
ask the pharmacist if that is ok. I hope it is - thanks for the
tip!
@tdrell Terri,
I had pain in both knees about six months ago so bad that it kept me awake at
night. It felt like two rats were gnawing on my kneecaps! I was put on a
ten day prednisone taper, I think it started at 40 mg the first day. It knocked
it out. So far, so good. Plus, I have been on many sites and learning about
foods that cause inflammation and avoiding or minimizing how much of that I will
eat. Also, have been working to balance my ph levels.
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2 Reactions@tdrell Amen to that Terri! My lung function numbers made my getting
disability automatic. When going through that process the doctors involved
recommended I leave the workforce due to stressors and needing to avoid
communicable illnesses i.e. colds, flu, etc. They said "You will last longer if
you go on disability." I am glad I did because I have needed the free time to go
to all of my doctor visits, (some of which have taken two full weeks of testing)
No employer would have tolerated me needing so much time off for medical care
and sick days anyway. Nowadays, my energy levels are sometimes zero. That is
when I am most grateful that I don't have to try to drag myself off to
work.
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2 Reactions@contentandwell,
Hi there! I too suffered migraines most of my adult life (hormone related I am
sure) I used Imitex, which worked well, then I took Maxalt which worked even
better and faster.
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1 Reaction@tdrell Terri,
I think we all have GERD just about. It seems to go hand in hand with
Bronchiecstasis.
@maryjo2sell Happened
to me too. I even got quarantined for two weeks because they thought it was
TB!
@maryjo2sell I
have been in exactly your same shoes. Have you had a recent sputem test for
psuedomonas? That is what made me hack like that for yrs! (along with
MAC) I was put on tobramycin and all coughing went away after one month of
being on it. I have been cough free for 8 months now and lungs are crystal
clear. Dr said Toby doesn't kill MAC just pseudomonas. I take Cipro for the MAC.
Until you can get that tested and cleared up, my go to remedy is Breath Easy Tea
by Traditional Medicinals. It can be hard to find, but I have had luck getting
it at Krogers. It is NOT in the coffee and tea Isle. You have to look in their
natural food isle. The tea has licorice root as first ingredient. that is very
beneficial. it also contains eucalyptus leaf, bitter fennel fruit, pluerisy
root, and other good things. It has worked great for me. It opens the airways,
calms inflammation, and minimizes the phlegm. When the inflammation is knocked
down, the other problems quite down too. I hope you give it a try. Please let me
know if you do and if it helped at all. Big Hug! - Terri M.
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1 Reaction@windwalker, Terri I SO agree with you! Hugs! Katherine