1. < MAC & Bronchiectasis

(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.

ginak | @ginak | Aug 15, 2018
In reply to @boomerexpert "@vestafit you go girl! Get what you know you need...do not depend on the medical community..." + (show)
@boomerexpert

@vestafit you go girl! Get what you know you need...do not depend on the medical community to do it for you.

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@vestafit Hi, I’m in NYC also. What Dr were you seeing? I see Dr. Kamelhar. He hasn’t put me on any antibiotics either. He says that’s the last resort if we can’t control it with lung clearance exercises. I take a good probiotic and Isotonix. I also have bronchiectasis, which many others on this sight have, and acid reflux. Where do you go to the NTM meetings?
Gina K

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1 reply
yayaaz | @yayaaz | Aug 15, 2018
In reply to @jkiemen "Inhaled Amikacin." + (show)
@jkiemen

Inhaled Amikacin.

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I thought it was injection only?

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america | @america | Aug 15, 2018
In reply to @america "@vestafit! I am also learning so much and enjoying every step. I am really happy to..." + (show)
@america

@vestafit! I am also learning so much and enjoying every step. I am really happy to hear your story how you got your saline. This is great news!!!

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Hi vestafit, I am doing good. It’s a struggle everyday for me and it’s because I also have RA and Sjogrens. I did use antibiotics for six months but got very sick and I stopped. It’s been 3 years and no me antibiotics.. I do feel very tired a lot but I’m not going to let this beat me. Good news in two weeks I see a doctor at Mayo Clinic and I’m so excited for that. I live in Tampa Fl and the Clinic is four hours away. I am looking forward to meeting great doctors and learning much more. Thanks Rita.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 15, 2018
In reply to @mobmcb "my husband had a bad case of pneumonia in 2013 while in federal custody,they almost ley..." + (show)
@mobmcb

my husband had a bad case of pneumonia in 2013 while in federal custody,they almost ley him die. he had so much fluid in his right lung he had to stay sitting up,Finally he was take to hospital where they inserted tubes to drain the fluid. He came home 2014 after 6 months he begin slowly to get sick . he receives medical care thru the VA ,his primary care doctor would treat each symptom with a pill, he went from 200lbs too 136 when his lung Dr. ordered a sputum test it was then he said he has MAI.we started the 3 antibiotics they said he would take for up to 18 months, its been 4 years he still takes them, every 2 or 3 months his torso will get so hot you can barely touch him, his lung Dr. sends him levoquin to take for 3 weeks. I am searching for answers on how too save him, his lung Dr. said he can never stop taking these antibiotics or the MAI will just explode says all we are doing is holding it at bay.
he spends more time in the bed than anything else.
I just happen on this site and hoping for some enlightment and guidance.

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@mobmcb Hi there, and welcome to our group. I am sorry to hear that your husband got so ill while incarcerated. It is hard, I would imagine, to get the best in medical care while in there. Getting the PROPER care now is crucial. My doctor has me on antibiotics for life. His theory is that he is treating my bronchiectasis which is inviting the mac. I have been on rotating monthly antibiotics since 2013. This treatment plan has been life-changing for me. I was so sick for years prior to this treatment plan that my dr. wanted me to consider a lung transplant. I feel like a normal human being again aside from waves of fatigue. There is a wealth of info in our threads (conversations) and also topics on the Discussion Board that can give you lots of info. Please tell your husband that it is possible to feel better again. He will have to be diligent with staying on a good treatment plan and avoid catching colds and flu. There is a section on the Discussion Board about changes to make to avoid reinfection (or adding to the existing bacterial load) Please feel free to ask me questions or share what you would like. When we share our tid-bits about this disease, we are putting together a collective puzzle. I know your husband is feeling pretty tough right now and I am sure it is hard for you to witness it. I feel for him, I really do. Is there anything you can think of that you'd like ask?

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mobmcb | @mobmcb | Aug 15, 2018
In reply to @mobmcb "my husband had a bad case of pneumonia in 2013 while in federal custody,they almost ley..." + (show)
@mobmcb

my husband had a bad case of pneumonia in 2013 while in federal custody,they almost ley him die. he had so much fluid in his right lung he had to stay sitting up,Finally he was take to hospital where they inserted tubes to drain the fluid. He came home 2014 after 6 months he begin slowly to get sick . he receives medical care thru the VA ,his primary care doctor would treat each symptom with a pill, he went from 200lbs too 136 when his lung Dr. ordered a sputum test it was then he said he has MAI.we started the 3 antibiotics they said he would take for up to 18 months, its been 4 years he still takes them, every 2 or 3 months his torso will get so hot you can barely touch him, his lung Dr. sends him levoquin to take for 3 weeks. I am searching for answers on how too save him, his lung Dr. said he can never stop taking these antibiotics or the MAI will just explode says all we are doing is holding it at bay.
he spends more time in the bed than anything else.
I just happen on this site and hoping for some enlightment and guidance.

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What is bronchiectasis? He has emphysema and his right lung is in very bad shape and cause a him pain, I asked his doctor about taking it out he said if he did that all infection would be in his left lung? He also said that he did not think my husband would survive a lung transplant.where do I find the discussion board you referred to
It would be nice if someone could explain to me how he got this horrific disease

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 15, 2018
In reply to @mobmcb "my husband had a bad case of pneumonia in 2013 while in federal custody,they almost ley..." + (show)
@mobmcb

my husband had a bad case of pneumonia in 2013 while in federal custody,they almost ley him die. he had so much fluid in his right lung he had to stay sitting up,Finally he was take to hospital where they inserted tubes to drain the fluid. He came home 2014 after 6 months he begin slowly to get sick . he receives medical care thru the VA ,his primary care doctor would treat each symptom with a pill, he went from 200lbs too 136 when his lung Dr. ordered a sputum test it was then he said he has MAI.we started the 3 antibiotics they said he would take for up to 18 months, its been 4 years he still takes them, every 2 or 3 months his torso will get so hot you can barely touch him, his lung Dr. sends him levoquin to take for 3 weeks. I am searching for answers on how too save him, his lung Dr. said he can never stop taking these antibiotics or the MAI will just explode says all we are doing is holding it at bay.
he spends more time in the bed than anything else.
I just happen on this site and hoping for some enlightment and guidance.

Jump to this post

@mobmcb The Discussion Board tab is underneath the picture that comes up when you first go to the mac and bronchiectasis group. You have to go to the list of groups and find the 'Mac and bronchiectasis' group, there is where you will find the tabs. The first tab says 'Discussion' The more you poke around this Connect site, the more you learn how to use it. I will see if I can dig up some info of interest to you until you can navigate your way around it. Be back to you in a bit.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 17, 2018
In reply to @mobmcb "my husband had a bad case of pneumonia in 2013 while in federal custody,they almost ley..." + (show)
@mobmcb

my husband had a bad case of pneumonia in 2013 while in federal custody,they almost ley him die. he had so much fluid in his right lung he had to stay sitting up,Finally he was take to hospital where they inserted tubes to drain the fluid. He came home 2014 after 6 months he begin slowly to get sick . he receives medical care thru the VA ,his primary care doctor would treat each symptom with a pill, he went from 200lbs too 136 when his lung Dr. ordered a sputum test it was then he said he has MAI.we started the 3 antibiotics they said he would take for up to 18 months, its been 4 years he still takes them, every 2 or 3 months his torso will get so hot you can barely touch him, his lung Dr. sends him levoquin to take for 3 weeks. I am searching for answers on how too save him, his lung Dr. said he can never stop taking these antibiotics or the MAI will just explode says all we are doing is holding it at bay.
he spends more time in the bed than anything else.
I just happen on this site and hoping for some enlightment and guidance.

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Hi @mobmcb,
Let me help you navigate this website. Mayo Clinic Connect is categorized in groups. Here are 2 groups that I encourage you to follow.
> MAC & Bronchiectasis https://connect.mayoclinic.org/group/mac-bronchiectasis/
> Caregivers https://connect.mayoclinic.org/group/caregivers/

If you click the link to each of these groups, you will see the discussions related to each.
Learn more about how to follow groups, manage your notification preferences and other tips here: https://connect.mayoclinic.org/get-started-on-connect/

I'm glad you joined this group.

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heathert | @heathert | Aug 22, 2018
In reply to @windwalker "Got great news today! Got my sputem test results back today; NO significant presence of any..." + (show)
@windwalker

Got great news today! Got my sputem test results back today; NO significant presence of any mycobacterium or fungal things growing.

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@windwalker Terri, that is fantastic, from lung transplant to wellness, have you had a ct scan to see any changes for the better(if MAC caused permanent damage ie bronch) How long and at what intensity do you exercise a day? Thanks Heather

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Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 23, 2018

New question - How do you avoid weight loss on MAC antibiotic therapy?
I was recently diagnosed with bronchiesctasis and sent to a pulmonologist by my primary physician. The cause was a seemingly endless asthma attack with a violent, productive cough that lasted for many months. He did many tests and cultures and diagnosed & treated pseudomonas for 2 months (4 courses of antibiotics (levaquin/tobramycin) and the cough continued. When I saw him for a followup, he apologetically told me I have MAI, and due to the cough, bronchiectasis and the lung damage showing on my CT scan, he felt it needed to be treated.
Enter the big 3 antibiotics - Rifampin, Ethambutol & Clarithromycin. He patiently spent time talking to me about the therapy and side effects, had suggestions about using live-culture yogurt & probiotics, and advised me to do my own research while waiting to start (had to finish Levaquin). He & his nurse were great at answering follow-up questions, but here is one for the group.
I began this journey at age 66, 5'2" tall and weighing 116 pounds, and I know I need to stay above 110# to feel okay. I also cannot eat any wheat products or tree nuts. The first 10 days of therapy is going well except intermittent nausea and slight diarrhea. But I have lost 3 pounds already without being sick, and I know from experience that there will be side effects from using antibiotics long-term. Any suggestions for maintaining my weight? I cannot tolerate Ensure and most products like that, which my doc suggested, so it's not an option. I also cannot eat any wheat products or tree nuts. Any suggestions for maintaining my weight?

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17 replies
Flib | @flib | Aug 23, 2018
In reply to @sueinmn "New question - How do you avoid weight loss on MAC antibiotic therapy? I was recently..." + (show)
@sueinmn

New question - How do you avoid weight loss on MAC antibiotic therapy?
I was recently diagnosed with bronchiesctasis and sent to a pulmonologist by my primary physician. The cause was a seemingly endless asthma attack with a violent, productive cough that lasted for many months. He did many tests and cultures and diagnosed & treated pseudomonas for 2 months (4 courses of antibiotics (levaquin/tobramycin) and the cough continued. When I saw him for a followup, he apologetically told me I have MAI, and due to the cough, bronchiectasis and the lung damage showing on my CT scan, he felt it needed to be treated.
Enter the big 3 antibiotics - Rifampin, Ethambutol & Clarithromycin. He patiently spent time talking to me about the therapy and side effects, had suggestions about using live-culture yogurt & probiotics, and advised me to do my own research while waiting to start (had to finish Levaquin). He & his nurse were great at answering follow-up questions, but here is one for the group.
I began this journey at age 66, 5'2" tall and weighing 116 pounds, and I know I need to stay above 110# to feel okay. I also cannot eat any wheat products or tree nuts. The first 10 days of therapy is going well except intermittent nausea and slight diarrhea. But I have lost 3 pounds already without being sick, and I know from experience that there will be side effects from using antibiotics long-term. Any suggestions for maintaining my weight? I cannot tolerate Ensure and most products like that, which my doc suggested, so it's not an option. I also cannot eat any wheat products or tree nuts. Any suggestions for maintaining my weight?

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@sueinmn I have not taken the antibiotics and yet have lost 26 lbs. I've 5' 7 so I'm skinny and trying hard not to go below a 100. I can't eat dairy so milk shakes etc are out I don't have much appetite but I do eat three meals a day. It seems no matter how hard I try, I can't gain or stop the loss. I'll be interested in other replies. Flib

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