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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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I'll have to look for that book. My husband is the one that has been diagnosed with MAC and bronchiectasis, but he doesn't cough. He does have a lot of mucus in his throat. I, however, have had a chronic cough for at least 20 years. I have been to a pulmonologist and all the suggestions he had have not worked - nasal irrigation, fluonase, ranitidine, elevated pillow for sleeping. I have been tested for asthma, and that did not yield any results (albuterol did not help). I know I have chronic post nasal drip. Perhaps this book will have the answers which have eluded me.
@irene5, Irene, all of his books are great. I especially like '8 weeks to optimal health'.
@ling123 I swear it is a mystery where that mucous comes from! I would get it in my throat every time I'd eat sweets or bread.
Everyone looks at me like I am nuts when I bring up the throat thing.
@windwalker It sure is a mystery to me, Terri. I only cough when there is too much mucus and the throat gets irritated. I could be coughing nonstop for a long time at one time and no cough at all for hours or even most of a day at another time. I've had this problem for years, in the neighborhood of 20 I'd say. I do also get more and thicker mucus when I eat sweets sometimes. But there is no consistent pattern to tell me which factors are definitely causes for the mucus. So I just decided that it must have been a combination of multiple things. For the past few days, I rarely coughed and haven't had too much mucus. Go figure. I know at some point, it will be showing its ugly head again. It always does. I'm too used to it to be too upset about it.
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1 ReactionHa, ha... @jkiemen Nobody I know can relate to my situation either. Sometimes I would all of a sudden notice that nobody around me in the office is doing this throat clearing thing and wonder what they think of hearing my noise every few minutes.
@lindam272 , I wonder if there will be any new info there. Or rather; will it be any different than what was discussed last spring expo in D.C.
@jkiemen what about your liver? Me too throat mucus. I have tried many things the NAET has reduced it a lot but every time I was eating or drinking wine, oily, fatty, sugary food I had some mucus. I would take Milk thistle that the Doctor prescribe me .
It is a brown liquid check (hübner milk thistle on web) that really helped. When they found out that I was aspiring liquid, then I had to thicken my liquid with Simply Thick now we’re talking it took care of the mucus. I had my galbladder taken out also.
Food has a lot to do with it! Keep looking you will find your solution do not give up! We can live a normal life!
@windwalker I agree with you Terri
Thank you so much. I will definitely check that one out!