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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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@heathert the probiotic only give you good bacteria to kill the bad one. No secondary effects! Use a good one!
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2 Reactions@jkiemen I agree with you! It is by trying that we will keep our lungs more healthy because they haven’t been successful with there study! The research is also a trial. They experiment just like we do. I am glad doing it with natural medicine instead the
the big 3 with all its secondary effects. I am happy with my success! Nick
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1 Reaction@windwalker yes my brother had a double lung transplant because he had both pulmonary fibrosis. His lungs was all hardened by the disease. He was a strong smoker and was expose to diesel fume. He had his transplant for 10 years and pass away 2years ago.
He fought very hard to stay alive. After his transplant his wife was still smoking outside or in the basement but the toxins was all in the house. People who smoke around you is very bad for people with lung disease. I have a lot of problem understand why
people are given permission to smoke around the pool. It doesn’t matter if you smoke outside the darn toxins is in the air and you have problem breathing. We can’t eat outside a restaurant because smoker try to kill us because they are permitted to smoke
outside a restaurant. What a pity we are paying for those who don’t care for there life! Nick!
@flib i have a very stupid question? Do you have pain on top of your feet above the toes? Or under your feet where your palm is? Nick
@nick52 Awe....I am so sorry that you lost your brother. He did well to stay alive for ten yrs after his transplant. It is the most difficult of transplants. What year did he have his transplant? Did he have it done in Canada?
@pfists Ha! I was thinking of breaking out the sterling goblets that were handed down from my grandparents! And start drinking from them.
@alleycatkate Kate, that was an interesting read about the filtering pots. I wonder how much they are? If I ever go on 'Naked and Afraid', that will be my object of choice to bring along. LOL! Seriously, I can imagine they are quite useful in some parts of the world.
@yayaaz Renee, I was on doxycycline for three yrs without any side-effects. I hope your aunt can tolerate it.
I am interested in opinions about my husband beginning to take the big 3. He has severe COPD, Bronchiectasis, a left lower lobe collapsed lung, he is on oxygen, he is an anemic, weight is down to 114, diabetes type 2, which does not cause him any problems and heart disease with one stint. I wonder if he is strong enough to begin the treatment. However, ID doctor ordered the prescriptions and wants him to begin Monday.
@nick52 Could you please elaborate on how much you use and how you prepare the ginger. Please make it a recipe for "how to prepare ginger for dummies"! Thank you.