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.

1478 | @1478 | Jan 15, 2018

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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18 replies
heathert | @heathert | Jan 15, 2018

@tamela Welcome. What you are going through sounds horrible , I hope that you have a better journey ahead and everything heals up well. If you have any questions about the meds or anything else please ask the group. Between us we have alot of knowledge.

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Jo Ann K | @jkiemen | Jan 15, 2018
In reply to @tamela "I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day..." + (show)
@tamela

I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day before Thanksgiving the bacteria buried itself deep in the lobe so antibiotics would not have worked. Since surgery I have splatters here and there on other parts of the lung so I’m starting my cocktail of antibiotics today. I will mention that the surgery is the most invasive and painful a body can go through. The ribs from being separated are beyond painful along with cut nerves and muscle. It’s the middle of January and I’m still in a lot of pain it takes a toll on you mentally and physically. I do not get much accomplished I can do a pad of laundry and I’m them worn out. The incision for what ever reason busted back open so I have a nurse come 2 times a week plus my husband does all the work because it has to be changed and packed 2 times daily. I really suggest you be persistent with your doctors about how deep MaC has gone into any part of lung before surgery. It’s been brutal.

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Did they tell you what type of MAC Bacteria you had? That sounds like you have been through allot. Had you been coughing or had lung issues for some time before your were diagnosed? Are you from a prone areal of the country?

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Jo Ann K | @jkiemen | Jan 15, 2018
In reply to @mac5ia "In my 12 year MAC journey I have recently reached the stage where I must start..." + (show)
@mac5ia

In my 12 year MAC journey I have recently reached the stage where I must start medications. I have GI track problems when taking antibiotics. What types of nutrition changes have any of you made to tamp down the GI difficulties?

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Jarrow's Formula

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nick52 | @nick52 | Jan 15, 2018
In reply to @1478 "wow, This is good to know! My mother want into the hospital at 7000 ft because..." + (show)
@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

Jump to this post

@1478 welcome! OMG that is a major operation.  I feel so bad for you.  My brother a both lung transplant and it was a long major operation but I think that was worst.  He caught a bacteria and needed to have surgery a second time within a month.  He nearly

died then.  Take good care and see a nutritionist to get the proper vitamine to get your immune system on a high performance again.  I will keep you in my prayer to get well soon!

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tdrell | @tdrell | Jan 15, 2018
In reply to @tamela "I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day..." + (show)
@tamela

I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day before Thanksgiving the bacteria buried itself deep in the lobe so antibiotics would not have worked. Since surgery I have splatters here and there on other parts of the lung so I’m starting my cocktail of antibiotics today. I will mention that the surgery is the most invasive and painful a body can go through. The ribs from being separated are beyond painful along with cut nerves and muscle. It’s the middle of January and I’m still in a lot of pain it takes a toll on you mentally and physically. I do not get much accomplished I can do a pad of laundry and I’m them worn out. The incision for what ever reason busted back open so I have a nurse come 2 times a week plus my husband does all the work because it has to be changed and packed 2 times daily. I really suggest you be persistent with your doctors about how deep MaC has gone into any part of lung before surgery. It’s been brutal.

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@tamela.....was there any consideration to a closed lobectomy? You poor dear! I Apache for you. Tdrell

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Jen_b | @jenblalock | Jan 16, 2018
In reply to @tamela "I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day..." + (show)
@tamela

I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day before Thanksgiving the bacteria buried itself deep in the lobe so antibiotics would not have worked. Since surgery I have splatters here and there on other parts of the lung so I’m starting my cocktail of antibiotics today. I will mention that the surgery is the most invasive and painful a body can go through. The ribs from being separated are beyond painful along with cut nerves and muscle. It’s the middle of January and I’m still in a lot of pain it takes a toll on you mentally and physically. I do not get much accomplished I can do a pad of laundry and I’m them worn out. The incision for what ever reason busted back open so I have a nurse come 2 times a week plus my husband does all the work because it has to be changed and packed 2 times daily. I really suggest you be persistent with your doctors about how deep MaC has gone into any part of lung before surgery. It’s been brutal.

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@tamela I'm so sorry you have gone through what you have! I hope the pain stops soon and you get your life back. Do you mind sharing where you had your surgery. I went to National Jewish last year and they talked about surgery because of lesions in my lungs but I feel fine so said I will wait and see if I get reinfected (MAC eradicated for now). Best to you and I hope you feel better soon!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 16, 2018
In reply to @tamela "I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day..." + (show)
@tamela

I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day before Thanksgiving the bacteria buried itself deep in the lobe so antibiotics would not have worked. Since surgery I have splatters here and there on other parts of the lung so I’m starting my cocktail of antibiotics today. I will mention that the surgery is the most invasive and painful a body can go through. The ribs from being separated are beyond painful along with cut nerves and muscle. It’s the middle of January and I’m still in a lot of pain it takes a toll on you mentally and physically. I do not get much accomplished I can do a pad of laundry and I’m them worn out. The incision for what ever reason busted back open so I have a nurse come 2 times a week plus my husband does all the work because it has to be changed and packed 2 times daily. I really suggest you be persistent with your doctors about how deep MaC has gone into any part of lung before surgery. It’s been brutal.

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@tamela, Hi Tamela, and welcome to our group. Gosh, I am so sorry to hear about you needing surgery and still suffering with pain. I amsure I can speak for all of us in sending you a great big cyber hug. When you are feeling up to it, I'd like to know more about your circumstances with this disease. Surgery in less than a year after diagnosis sounds unusual. Do you think you had been sick with MAC for quite some time prior to March of 2017, and were just never properly diagnosed?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 17, 2018
In reply to @mac5ia "In my 12 year MAC journey I have recently reached the stage where I must start..." + (show)
@mac5ia

In my 12 year MAC journey I have recently reached the stage where I must start medications. I have GI track problems when taking antibiotics. What types of nutrition changes have any of you made to tamp down the GI difficulties?

Jump to this post

@mac5ia, Welcome to our online support community. I am so glad that you found us. Taking probiotics seems to be key for keeping your GI straight while on the antibiotics. You must wait two hours after and before you take your antibiotics to take the probiotics. Otherwise, the antibiotics just kill off the good bacteria before it can get into your system. Many have said that taking the rifampin on an empty stomach works best for them. You can tweak your medication schedule so that it suits your tolerance. I hope you have no trouble with it. What part of the country do you live? I like to keep track of where mac is rearing it's ugly head.

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nick52 | @nick52 | Jan 17, 2018

@coleen can you tell me if I can read email send privately

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