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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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Terrific! Unfortunately and as usual, this study is not being conducted in the US... we must advocate more loudly to get our own country off its national ass and take MAC as seriously as to other advanced nations....
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1 Reaction@boomerexpert Absolutely correct! My own doctor is very interested in these studies! When I participated in that study several months ago, that was one thing I tried to make perfectly clear! Maybe I should have said it the way you just did!! 🙂
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1 Reaction@windwalker hi question do you know while in remission is there anything to take on a daily bases for protection against another brakeout especially bf the flu season that previous set mine off
you'll have more opportunities...and yes, docs are quite competitive and don't like knowing that other countries are ahead of us
@beverly1945 Hi Beverly. My doctor has me on Cipro for 10 days every other month. And then om Tobramycin for 28 days every other month. i am on these as a preventative measure. Plus, I get a flu shot every year by Oct 1. Then. i avoid stores and restaurants during the winter holiday season. I don't like to take the risk of picking up germs at those times. Wash hands A LOT!
@irene5, @boomerexpert Subtle neuropsychiatric and neurocognitive changes in hereditary gelsolin amyloidosis (AGel) amyloidosis is a great read from U of Helsinki hospital. Also, Oral Health for Hereditary Gelsolin Amyloidosis.
Thank you!
@oldkarl Not sure what all that means, but thanks!
@boomerexpert It is simple. If you get hereditary Gelsolin Amyloidosis, you will, as part of it, get an "amorphous (shapeless) deposit of dead protein prions (cells) in the top of your head. This will make you depressed and easily angered. It will affect everything you do. The source is the Gelsolin program and clinic at the University of Helsinki in Finland. Finland is apparently where Gelsolin started, and the Vikings spread it around the world.
@jms64 I have the same kind of chest pain too. Chest discomfort, tightness and pressure... not a good sign. Mine followed by some coughing up blood and hospital stay...