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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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Yes can anyone recomnend what to do im using prohibitcs and nystatin
You can get rid if mac without antibitics it wont go away
Probiotics such as Lactobacillus acidophilus help
@ling123 glad!
Thank u im using it do you know how long im so tired of being sick
I am using Jarrow Formulas Jarro-Dophilus EPS, 5 Billion Cells Per Capsule ordered from Amazon. One of our other members recommended it because the National Jewish Hospital MAC center recommended. I think it has 4 different types of probiotic in it. Seems to agree with me.
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2 ReactionsI have not taken any probiotics. But I plan on looking into it. The information on them provided by people on this site is very helpful.
One dr told me its lack of progestrone really could believe he would say that
@lindam272 - I'm going to try the criptolepsis and biden. @pfists (Sheri) has actually been taking these two herbs for awhile so I'm kind of following her lead. I read parts of the book about two months ago and its fascinating and scary at the same time. I believe there was also one more herb that can be taken also but I can't remember the name. I haven't ordered anything yet but I will soon. It's unbelievable the amount of knowledge this man has on herbs. I've been off the big 3 since last April and I don't want to ever have to do them again if I don't have to. Nan
@pfists - Thanks so much for your info. I haven't actually bought the herbs yet but I'm going to. I hope I get the results you do! Nan