(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

lauraadam2425 | @lauraadam2425 | Jul 30, 2023

In reply to @sueinmn "Hello @rosnat, I am answering you within a different discussion that is more current, so others..." + (show)

@sueinmn

Hello @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

Jump to this post

I was on the big 3 for 9 months but had eye problems so they took me off ethambutol. I continue to take azirhromycn and rifampin. I have had restless leg for years and finally have found a med that works. I took 4mg of ropinirole at supper time. Four months ago it was not enough as if I sat down for a period of time during the day the restless leg would start. I didn't want to take my 4mg does of meds during the day as it made me sleepy. So now I take 1 mg of ropinirole as needed during the day and 4mg at supper time. I believe sleepless leg is hereditary as my brother has it and I suspect my father had it as well.

rosnat | @rosnat | Aug 2, 2023

In reply to @dixer "I live in ocala FL" + (show)

I live in Ocala as well My sputum came back positive for Mac and they have sent me to a pulmonologist here and an infectious disease dr. At this point I am not happy about the regimen after reading everyone else's. I am going to try to find a specialist at Shands as well. I know they have a MAC clinic but I wasn't able to get in on first try. I'm going to keep trying now that I see what the locals offer. I will post if I have any success.
Rose

kwi | @kwi | Aug 3, 2023

In reply to @rosnat "I live in Ocala as well My sputum came back positive for Mac and they have..." + (show)

Just remember that MAC is slow growing. Doctors who aren’t very familiar with MAC read the treatment guidelines which I think now say to start treatment right away. Unless you are very sick, you are probably okay waiting until you see a doctor that is knowledgeable and experienced in dealing with bronchiectasis and MAC. I was recommended treatment right away, but I waited until I was able to get into NJH and get their assessment. I am not on antibiotics at this time. I hope I won’t ever have to be but if I do, then I want to be monitored by a doctor who specializes in MAC.

babykay | @babykay | Aug 3, 2023

I was diagnosed in 2001 with MAC and have been on Mucinex. Doesn't help me at all

maryjanechilds | @maryjanechilds | Aug 3, 2023

In reply to @lauraadam2425 "I was on the big 3 for 9 months but had eye problems so they took..." + (show)

Hi Laura,
Thanks for your post. Please tell me the symptoms you had when you began to develop eye problems from the ethambutol?

Sue, Volunteer Mentor | @sueinmn | Aug 3, 2023

In reply to @rosnat "I live in Ocala as well My sputum came back positive for Mac and they have..." + (show)

If you are looking for a new doc, and haven't been able to get into your "first choice" try to do a little pre-interviewing before starting - in my world, this means to get the appointment through the corporate "appointment center" then, with the doctor's name in hand, start looking up their on-line profiles. Follow this with calling their location directly - this can be hard to do, but worthwhile, and ask to talk to their nurse or PA or respiratory therapist about how much MAC they treat. If they are not sure, they can always ask the doc. That is how I found my ID doc, who led me to the right pulmonologist.
Sue

rosnat | @rosnat | Aug 3, 2023

In reply to @sueinmn "If you are looking for a new doc, and haven't been able to get into your..." + (show)

Thanks for the information. My pulmonologist here in Ocala won't interfere with what the Infectious Disease doctor ordered. I'm not too crazy about that I would like to have his opinion not for him to just be loyal to another doctor. But I'll try what you said and see what I come up with

lauras1949 | @lauras1949 | Aug 17, 2023

In reply to @katemn "Hello Elaine, good to hear from you! It is good for new people to hear that..." + (show)

Hello, @kateman-
Your post from 2016 was very informative. I've been on the 3 antibiotics: rifampin, azithromycin and ethambutol for just 2 1/2 months and was wondering if I could go ahead with cataract surgery I'd like to have. While doing cursory research on ethambutol and vision, I seemed to be finding that the incidence of problems goes up with the dosage. Mine is 400mg daily, which seems high, according to what I've read. I'm waiting to get an answer back from my doctor. But it helps to hear you warn us to "be very aware."
LauraS1949

lauras1949 | @lauras1949 | Aug 17, 2023

In reply to @maryjanechilds "Hi Laura, Thanks for your post. Please tell me the symptoms you had when you began..." + (show)

From one Laura to another!
I have been on the usual 3 antibiotics for 2 1/2 months, with no obvious problems. But in considering getting cataract surgery, I did a bit of research on ethambutol and vision... and now I'm concerned. Seems it takes a while to develop, and the higher the dosage, the greater the risk. I'm taking 400mg daily, which seems high according to what I've read. I'm waiting to hear back from my doctor. Meanwhile, I'm very interested in your experience and I wonder as MJ does: what were your symptoms and when did they start?
Thanks so much and wishing you the best! LauraS1949

Sue, Volunteer Mentor | @sueinmn | Aug 18, 2023

In reply to @lauras1949 "Hello, @kateman- Your post from 2016 was very informative. I've been on the 3 antibiotics: rifampin,..." + (show)

I'm sorry to say that Kate is no longer with our group. As for the cataract surgery, I just had that conversation with my eye doc. I am not currently on antibiotics, but she said if I was, we would stop the Ethambutol for about a month before surgery, and 2-3 months afterwards. Apparently this is the protocol, at least in my clinic. The ID doc, pulmonologist and ophthalmologist are all part of the same large group.
Sue