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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 have had ringing in my ears since taking the big three, it is a listed side effect. I stopped medications a year ago, and it has not gone away.
@luvocean. You won’t know if you din’t try! It will help detox your liver so it is a win win worth a try! It could also be something else causing the ringing the ear. It could be tinnitus or ....
Milk Thistle is a flower and it detox your liver. It really worked for me and others I know who tried it. Check the web it is a brown bottle . Check the web Hübner Milk Thistle
@nick52 - thanks for the milk thistle info. I will look for the picture of it in my mailbox. Or if you just have the brand name I can look it up.
Nan
Antibiotic is hard on the liver. Those who are taking them maybe should consider taking it once a day or drink Dandelion herb tea to detox.
@unicorn - I have been off the big three also for about 10 months and my ringing in the ears has not gone away either. Nan
Here’s the link for Milk Thistle : http://www.huebner-vital.de/en/prod-lebergalle-mariendistel-l-tonikum.html
I have try the capsule it doesn’t work as well. This one was recommended by my Health Doctor
@nick52 ,Thank you for the information on ringing in the ears. Its been so loud, it's distracting for A year now. It started when I started the big 3. Ive been to my ear, nose , and throat doctors and they sent me to hearing and balance specialist. They said there was nothing they could do because the medication was important in sustaining life and my hearing could always be fixed later.
They wanted to see me in six months, but i thought that we should be monitored closer than that. I will definitely try milk thisle.
Thanks again ,
Becky
@chinasmom , doctors do not study that. My mother in law had pain in her arms shoulder on the right side the same side of her liver. I told her that it could be her liver but her doctor gave her so much pills. We ask her doctor who says it has nothing to
do with her liver. Three years later she had cancer of the liver. We ask the oncologist if the pain in her shoulder was related to her cancer and he said YES! See what I mean! Good luck!
The ear ringing is because of azithromycin. I get it also.