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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 2, 2019
In reply to @flib "Thanks, Terri. Another good day. Not as thrilling as yesterday's energy but a pretty normal day...." + (show)
@flib

Thanks, Terri. Another good day. Not as thrilling as yesterday's energy but a pretty normal day. That is, I could breathe and run errands and make a meal. Yippee!

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@flib Glad to hear you are having another good day. I had a great energy day yesterday, actually got a lot done. Today, I am struggling to breathe. My husband came home today and said "By the way, we are having a small Super Bowl party tomorrow." I wanted to strangle him. I do not do things like that without asking him first. The people coming have small children and as of today; I cannot imagine having the energy to entertain them. (Let alone prep food for a crowd.) I pray that I feel differently by tomorrow. Grrrr!

REPLY
1 reply
bevmac | @bevmac | Feb 2, 2019
In reply to @windwalker "@bevmac Hi Bev. Welcome to our site. You can click on my picture and read about..." + (show)
@windwalker

@bevmac Hi Bev. Welcome to our site. You can click on my picture and read about my treatment plan. My plan works for me, but understand, it cannot work for everybody. It would depend on the sevetity of your disease, the specie of mac, and your suseptibility results. I hope you are taking the time to read over past posts and scroll through the topics in our discussion board. I am sorry that you have mac, but glad that you have joined our group. Let me know if I can help with any questions you may have. Are you able to navigate this site alright?

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Thanks for your post Windwalker. I am beginning tomorrow with the meds. I will only know how things turn out as I begin and see how the treatment affects me. So pleased to know others have walked this road - none of my friends or family have had anything like this situation. I will be reading all posts and staying as positive as I can. I may be 75 but have 5 kids and 14 grandkids and I feel I have a lot more life to live. I am single and am able at present to take care of myself. In Australia at my age we have a great Aged Care program - where I can get home help and transport etc. I also have spiritual beliefs and friend support emotionally.

REPLY
phyllistamara | @phyllistamara | Feb 2, 2019

am going to start azithromycin,Rifabutin,and Ethambuton for MAC. I also have Bronchiectasis
Wish I knew others who took these drug to help with this disease to quell My fears

REPLY
3 replies
bevmac | @bevmac | Feb 2, 2019

Hi Phillistamara, I too am beginning tomorrow to take clarithromycin 250 mg, ethambutol and Rifampicin tomorrow - and taking these drugs Monday, Wednesday and Friday. It is great to have this page to share stories and pass on info.

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1 reply
deborahwolf | @deborahwolf | Feb 2, 2019
In reply to @conniewright "I am 68. First round when I was 60 and 61. Second round at 66 and..." + (show)
@conniewright

I am 68. First round when I was 60 and 61. Second round at 66 and 67. We are all different when it comes to the meds, heaven knows. I have been lucky with no lasting effects. They also convert me to negative right away. But the MAI keeps coming back. At 68 there are things I am willling to do and things I am not. I will not lose my eyesight or hearing for this disease. I will also not spend half my time on a picc line. I never wanted to live to be old, old. I am not adjusting well to old age and always knew I wouldn't. I don't outwardly exhibit that, but my happy act is just that- an act. I think my dr. at Tyler, TX will send me to Dr. Mitchell for surgery this time. I am willing to do that with a few months of meds before and after. If that will give me 8 or 9 more good years I am content. If I have to lose my hearing to do that, I refuse to live those years in isolation and a complete nuisance to everyone. We all are masters of our bodies, not the doctors. My doc and I each know our limits and work together. I have post polio syndrome- possibly why I have MAC- so my legs are getting worn out. I am not fit at all. You are lucky you can really exercise. But I am like you. Keep thinking a new treatment will come out after all these years. Research seems pitiful.

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@conniewright I feel the same way about taking the medications for MAC and risking my vision and hearing. Shortness of breath and occasional fatigue are my only symptoms and for now am willing to live with that. I will wait and see if the disease and/or symptoms progress.

REPLY
unicorn | @unicorn | Feb 2, 2019
In reply to @conniewright "I am 68. First round when I was 60 and 61. Second round at 66 and..." + (show)
@conniewright

I am 68. First round when I was 60 and 61. Second round at 66 and 67. We are all different when it comes to the meds, heaven knows. I have been lucky with no lasting effects. They also convert me to negative right away. But the MAI keeps coming back. At 68 there are things I am willling to do and things I am not. I will not lose my eyesight or hearing for this disease. I will also not spend half my time on a picc line. I never wanted to live to be old, old. I am not adjusting well to old age and always knew I wouldn't. I don't outwardly exhibit that, but my happy act is just that- an act. I think my dr. at Tyler, TX will send me to Dr. Mitchell for surgery this time. I am willing to do that with a few months of meds before and after. If that will give me 8 or 9 more good years I am content. If I have to lose my hearing to do that, I refuse to live those years in isolation and a complete nuisance to everyone. We all are masters of our bodies, not the doctors. My doc and I each know our limits and work together. I have post polio syndrome- possibly why I have MAC- so my legs are getting worn out. I am not fit at all. You are lucky you can really exercise. But I am like you. Keep thinking a new treatment will come out after all these years. Research seems pitiful.

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Hi Connie, I hate getting old also! I was so cute, was was. Well at least I'm thin and look great in jeans, thanks to the MAC. I'd like 10 years also. That's what I figure I have left, 10 good years. Maybe good. Yes research is pitiful, but there is some hope from AIT Pharmaceuticals. They are developing inhalants with the Israelis. They are for cystic fibrosis and COPD but they mention mycobacterials also. Just hang in there an watch great stuff on netflix, Oh, and Winter is Coming!!! xo

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2 replies
ConnieW. | @conniewright | Feb 2, 2019
In reply to @phyllistamara "am going to start azithromycin,Rifabutin,and Ethambuton for MAC. I also have Bronchiectasis Wish I knew others..." + (show)
@phyllistamara

am going to start azithromycin,Rifabutin,and Ethambuton for MAC. I also have Bronchiectasis
Wish I knew others who took these drug to help with this disease to quell My fears

Jump to this post

Do not let yourself suffer from the meds. I could not take Rifabutin at all, but do beautifully with Rifampin which is the sister. Squawk if one of them is making you sick. They can change it out and they should or get a new doctor. My doctor in Tyler would never have let me suffer or be in bed from the drugs. I read where these poor patients spent a year on the couch. Ridiculous and not necessary.

REPLY
1 reply
Havah | @londonritt | Feb 2, 2019
In reply to @unicorn "Hi Connie, I hate getting old also! I was so cute, was was. Well at least..." + (show)
@unicorn

Hi Connie, I hate getting old also! I was so cute, was was. Well at least I'm thin and look great in jeans, thanks to the MAC. I'd like 10 years also. That's what I figure I have left, 10 good years. Maybe good. Yes research is pitiful, but there is some hope from AIT Pharmaceuticals. They are developing inhalants with the Israelis. They are for cystic fibrosis and COPD but they mention mycobacterials also. Just hang in there an watch great stuff on netflix, Oh, and Winter is Coming!!! xo

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Thanks for sharing the info.about AIT

REPLY
bevmac | @bevmac | Feb 2, 2019
In reply to @conniewright "Do not let yourself suffer from the meds. I could not take Rifabutin at all, but..." + (show)
@conniewright

Do not let yourself suffer from the meds. I could not take Rifabutin at all, but do beautifully with Rifampin which is the sister. Squawk if one of them is making you sick. They can change it out and they should or get a new doctor. My doctor in Tyler would never have let me suffer or be in bed from the drugs. I read where these poor patients spent a year on the couch. Ridiculous and not necessary.

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thanks for this information conniewright

REPLY
alleycatkate | @alleycatkate | Feb 2, 2019
In reply to @windwalker "@flib Glad to hear you are having another good day. I had a great energy day..." + (show)
@windwalker

@flib Glad to hear you are having another good day. I had a great energy day yesterday, actually got a lot done. Today, I am struggling to breathe. My husband came home today and said "By the way, we are having a small Super Bowl party tomorrow." I wanted to strangle him. I do not do things like that without asking him first. The people coming have small children and as of today; I cannot imagine having the energy to entertain them. (Let alone prep food for a crowd.) I pray that I feel differently by tomorrow. Grrrr!

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@windwalker ...I say strangle him and be done with it! haha.

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