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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@windwalker...gross quota for the day. Haha. Sadly, the man was very unobservant of his animal. You can always tell an animal has a tape as you see “little rice kernels” on their butts or on anything they lie upon. Smoochin’ the pooch is not a good idea. (Just kiss their heads to show ya love them.) 😘
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2 ReactionsAlll I know is the doctor said to never bring birds in your home. Not good for humans. People that work in chicken places get this disease as well. I wished I had known too. My husband did not clean the cage like he should have and it was awful.
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2 ReactionsFruits, veggies, bone broth. I take bone broth capsules. Also turmeric capsules is good to take.
I looked it up and you can get this disease from birds feces over a number of years of inhaling the dried particles in the air if your immune system is compromised. I am allergic to cats and I have a cat, but take allergy pills. You can also get his disease from dirt and water.
what about chicken manure on plants...
@bevmac, @cindyrue, Chicken manure on plants.....gross! Best to avoid that. Remember, any foreign particles of any kind can be harmful to your lungs, especially if you have bronchiectasis.
No! Chickens are a source for MAC and other yucky stuff. Vegetable gardeners are cautioned by food safety experts to keep chickens and their droppings out of the garden. Yes, I know your Grandma always let her free-range chickens scratch in her gardens, but that was before we knew a lot about antibiotic resistant bacteria, ecoli, etc...
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1 ReactionHi All, I was wondering if anyone on here has ever heard of, or used, an “Aerosure Medic+ Breathe Easier” device? I’m in Australia right now and I see it for sale at the local chemist (pharmacy), and I’m wondering if it would be worth buying here since I don’t believe it’s sold in the US. It is a battery operated IMT (Inspiratory Muscle Training) and oscillating PEP (Positive Expiratory Pressure) device for use by COPD and bronchiectasis patients. Seems like it might be a battery powered version of an Aerobika. Any thoughts are appreciated, especially from anyone in Australia who may be using it. I’m leaving in 3 days so I don’t have much time to decide.
Thanks
Gina
If it isn’ too expensive, I would
personally be excited to give it a try.
In fact, I wish I could! If you do get it, please let us know what you think.
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1 Reaction@ginak Hey girl! How is Australia? You can try Googleing that product and add the word 'reviews' and then see what others think of that product. @megan123 Jennifer has a very good nebulizer. Hers is super fast.