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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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Thank you so very much. Exactly what they are saying happened to me. Kaiser would not provide a referral for 2nd opinion for my MAC/BE, despite the fact Kaiser has NO experts in these conditions. I was told, if I had Medicare it would have been covered. But since I had the advantage plan, I had to get permission from my dr who gave me some cockamamie excuse as to why it was not allowed. Your article sealed the deal...I am dumping the advantage plan!
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2 ReactionsIs this topic still open? I see only older posts.
Hello, and welcome to Mayo Connect. This post is very active - to see the most recent activity in any Connect discussion, move up the page, above the first post, click the drop-down box and select "Newest to Oldest"
What brought you to visit us?
Sue
I was diagnosed in November 2021. My symptoms have been minimal until the past three months, when I seemed to be sick almost half the time. I’ve never been on antibiotics, but I think it’s time. I see Dr. Aksamit at Mayo but it’s very hard to get into him. Right now I’m set up to see a fellow sometime in August but I wonder how to get help before then.
Where is a drop down box? Can you send a screenshot?
I'm not good at this, so I'm calling on my fellow mentor @johnbishop - can you help with this?
Thanks,
Sue
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1 Reaction@dvinje - Here is a screenshot that shows the dropdown box just below a discussion in the lower right corner. By default it is set to Oldest to Newest but you can change to your preference when viewing a discussion.
Thank you!
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1 ReactionI was diagnosed with pulmonary MAC about 4 years ago and took Abx for 1 year. Found by bronch but never had any sputum production. Now I had an upper respiratory infection in December 22 that never lef my lungs get back to normal. Now I am 2 weeks post Covid with tons of sputum production. I am on a zpack and duoneb at home seems to be helping. Hope this is just a reoccurrence of bronchiectisis and not MAC.
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2 ReactionsHello @rosnat, I am answering you within a different discussion that is more current, so others are more likely to see and reply.
You wrote, "Hello my name is Rose I was just diagnosed with Mac about 1 month ago. I am 73 and I also have COPD. My dr. who is infectious disease Dr. put me on Clarithromycin 500mg 2 x a day and Rifampin 2 a day but for 7 days a week. Only after two days my stomach is a mess and also am having trouble falling asleep at night since starting these meds. It feels like what they call restless leg syndrome and I never had that before. I take 5mg of Ambien each night, have been for years because of insomnia . My question is most everyone is saying they are taking 3 different drugs not 2 and they only have to take them 3 days a week. Does anyone else have to take them everyday and he said I will be taking them for 2 years.? I can not imagine feeling this bad for years. He said my CT looked good other than the COPD no lesions or nodules so we caught it right away. Is anyone else having trouble with their legs when they go to bed or unable to fall asleep?"
I am really curious about your doctor's choice as well. It sounds like perhaps protocols are different for people with COPD. Or the specific strain of MAC you have may have been shown to respond better to this regimen. Or he may not have a great deal of experience with treating MAC infections.
Can you ask him why he chose the options he did? Feel free to refer to this document to learn more about treatment protocols:
https://www.lung.org/lung-health-diseases/lung-disease-lookup/nontuberculous-mycobacteria/learn-about-nontuberculosis-mycobacteria
Or to this treatise if you enjoy wading through scientific documents :
https://ntminfo.org/wp-content/uploads/2020/07/NTMguidelines2020.pdf
As always, the members here are happy to support you, and help answer questions, but some need to be addressed directly to your doctors.
Sue
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