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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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@katemn Katherine,
I love that "How do you eat an elephant?' phrase! Will have to store that one in
my memory bank. I am sure it will come in handy one day.
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1 Reaction@katemn Per
your 'weather patterns affecting our conditions' discussion. For the last thirty
years when I would become ill due to the barimetric pressure changes, i.e.
storms rolling in etc. people thought I was nuts and making it up. When I first
learned that it does affect us, I was relieved that it wasn't just me being an
idiot. Same goes for smells that send my lungs into an uproar. Especially when
the oven or toaster over is turned on. If any residue on the bottom starts to
heat up, I cough continueously and I have to leave the room. My hubby still
thinks that is all in my head.
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2 Reactions@katemn, @unicorn Christa's transformation didn't escape my notice
either. We watched her go from fearful and beaten down by her varied health
issues, to being stronger in dealing with her health and advocating for
others. You know, it truly is a gift we witness here; when we see how we help
one another. For some, it is particularly amazing because they are so very ill
themselves and yet still put forth the energy to contribute. Hugs &
gratitude to all of you! Terri M.
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2 ReactionsHello Andree. I feel like you leaving a cold, damp environment is a very good idea. I was constantly getting lung infections in Virginia, not to mention achy joints. There is something about that damp, penetrating cold that tends to settle in the lungs and bring on infections. I moved the beach in SC and have been healthier for it.Good luck with your move! - Terri M.
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1 Reaction@auntnanny Hi
Jan! I am curious and keeping a poll. What did you do for a living? Thank you,
Terri M.
Hi all
Haven't been on here for awhile.
Saw my infectious disease Dr today.
She wants me to get a second opinion at the Mayo clinic here in Minnesota just an one and half hours from here. I have been testing positive for mycobacteria abscesses for a year now. Had several CT scans throughout the year the last was a little better then the one before.
She said treatment May include a couple of IV's. I would administer myself. I have done IV's on myself before but was hoping for oral or inhalation medications.
Have others here had to do IV's.?
Really do not want to do this route.
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1 Reaction@pfists I think the Mayo clinic will answer your questions...I'm interested in the natural improvement you're making without meds; think it's a good sign you don't need'em, and Mayo will give you good advice on that. As for IV vs. specifically oral...I'll be thrilled if I can avoid the stomach-killing oral drugs and do IV! Inhaled is best as it's most targeted,
Hi Julia, if you still go to Florida, there is a wonderful Mayo clinic there in Jacksonville. From what I just read of your posting, You and I have had similar medical experiences. I seems we were both mismanaged because the drs we saw really weren't that schooled in treating bronchiecstasis. Your voice may be raspy due to GERD/acid reflux. The minute I mentioned the severe burning I had in my esophagus, the dr at Mayo immediately ordered up a scan for it. The scan showed I had acid corrosion that was eating away tissue at the bottom of my esophagus. I had complained about that burning for yrs to my GP and various pulmonologists and NOT one even mentioned acid reflux or prescribed a med for it! In old medical records; it was discovered that I had bronchiecstasis about 15 yrs ago. No one even mentioned it to me!!! I just learned of it four yrs ago. Getting GOOD medical care is critical, as is knowing how to take care of yourself with this disease. This forum will be very helpful to you as well. So glad that you found us! -Terri M.
I was an executive secretary for an oil company for 6 years until I was expecting first child. Then, I taught music privately and in local school system for 27 years. Married a farmer/rancher and have lived with the same old cowboy 54 years. Lots of cattle and many, many acres of wheat, corn, soybeans, milo, etc. I also have bred and shown labradors for 30 years now. Have finished almost 40 champions and continue to do the breeding program. And..... I have a real estate business in town. Yes, I'm old..... time goes very fast.
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1 ReactionJust sayin...... when I went to Mayo's originally, my voice was quite hoarse and one of the tests they immediately did was with a voice specialist to see if vocal cords were damaged. It was a very nice lady and when she first looked, she said she couldn't even see my vocal cords because there was so much phlegm covering them. I drank lots of water and she could finally get a look at them but said they were perfect. No damage at all. Mayo's will probably check out the raspy voice and give you good news too
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