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.

Terri Martin, Volunteer Mentor | @windwalker | Oct 18, 2018
In reply to @jasmine321 "I was diagnosed with bronchiectasis in 2012. Had MAC in 2013 and took 3 antibiotics for..." + (show)
@jasmine321

I was diagnosed with bronchiectasis in 2012. Had MAC in 2013 and took 3 antibiotics for a year. My pulmonologist ordered sputum culture last week because I’ve been having dry and sometimes productive coughs for a month. I have MAC again. My chest X-ray looks worse than the last one taken 3 years ago. What can you say about lung lavage?

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@jasmine321 Hi Jasmine, welcome to our Connect group. Well, that is certainly disheartening news after having been on those antibiotics for a year. I believe you when you say you have mac again, but I am curious how your dr. got such a fast diagnosis? It takes 6-8 weeks to culture a sputem sample and you mentioned that you had the sputem test done last week. Have you had a chance to read over some of our older posts or read our topics in the Discussion Board? It is located on the 'Mac and Bronchiectasis' home page. There is a wealth of info in our threads (conversations). My next reply to you will be about lavages.

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1 reply
Terri Martin, Volunteer Mentor | @windwalker | Oct 18, 2018
In reply to @jasmine321 "I was diagnosed with bronchiectasis in 2012. Had MAC in 2013 and took 3 antibiotics for..." + (show)
@jasmine321

I was diagnosed with bronchiectasis in 2012. Had MAC in 2013 and took 3 antibiotics for a year. My pulmonologist ordered sputum culture last week because I’ve been having dry and sometimes productive coughs for a month. I have MAC again. My chest X-ray looks worse than the last one taken 3 years ago. What can you say about lung lavage?

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@jasmine321 There several members on thos site who were treated successfully with lavage. @pfist (Shari) I believe is one of them. Are you familiar with the procedure? I know that it is done with bronchoscopy and they squirt a small amount of saline into your lung and then suction it out. It is a lung cleanse of sorts to remove phlegm (and with it, mycobacterias) and mucous plugs. It is sometimes used for people who have the type of mac that causes cavities in the lung. How confident are you that your doctor knows how to treat this disease? Do you know what specie of mac you have?

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Terri Martin, Volunteer Mentor | @windwalker | Oct 18, 2018
In reply to @america "Hi Terri! I have done more in the past 3 days than I have done in..." + (show)
@america

Hi Terri! I have done more in the past 3 days than I have done in past few months! It’s really great to feel alive again. I am so grateful for the choice of medication and a wonderful doctor! For this group and Mayo! But special thanks to you Terri! You have been the biggest help.

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@america Wow girl, you made my night! It's all about proper care and attitude. Big hug!

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irene5 Irene Estes | @irene5 | Oct 19, 2018
In reply to @windwalker "@jasmine321 There several members on thos site who were treated successfully with lavage. @pfist (Shari) I..." + (show)
@windwalker

@jasmine321 There several members on thos site who were treated successfully with lavage. @pfist (Shari) I believe is one of them. Are you familiar with the procedure? I know that it is done with bronchoscopy and they squirt a small amount of saline into your lung and then suction it out. It is a lung cleanse of sorts to remove phlegm (and with it, mycobacterias) and mucous plugs. It is sometimes used for people who have the type of mac that causes cavities in the lung. How confident are you that your doctor knows how to treat this disease? Do you know what specie of mac you have?

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@windwalker888 Terri I had lavage done - no success for MAC removal, but I am just one person.

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2 replies
jasmine321 | @jasmine321 | Oct 19, 2018
In reply to @windwalker "@america Wow girl, you made my night! It's all about proper care and attitude. Big hug!" + (show)
@windwalker

@america Wow girl, you made my night! It's all about proper care and attitude. Big hug!

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My doctor is a very good pulmonologist. He told me he is considering bronchoscopy. My sputum culture is growing Mac aveum. From what I learned, treatment is a cocktail of antibiotics, around 3, and duration of treatment is at least 12 months. I guess recurrence is always a possibility.

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Jo Ann K | @jkiemen | Oct 19, 2018

@jasmine321 Mine grew the same. I started the Antibiotics about 2.5 years after the diagnosis. I am on month 11 of treatment. I think my Pulmonologist would like up to 18 months if tolerated. He says the bacteria is so slow growing that you need long term antibiotic to catch all the bacteria in its various stages when susceptible. So far tolerating with occasional stomach aches and fatigue. I am still working full time with it.

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1 reply
jasmine321 | @jasmine321 | Oct 19, 2018
In reply to @jkiemen "@jasmine321 Mine grew the same. I started the Antibiotics about 2.5 years after the diagnosis. I..." + (show)
@jkiemen

@jasmine321 Mine grew the same. I started the Antibiotics about 2.5 years after the diagnosis. I am on month 11 of treatment. I think my Pulmonologist would like up to 18 months if tolerated. He says the bacteria is so slow growing that you need long term antibiotic to catch all the bacteria in its various stages when susceptible. So far tolerating with occasional stomach aches and fatigue. I am still working full time with it.

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Are you taking anything like probiotics, to help prevent effects of long term antibiotics?

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boomerexpert | @boomerexpert | Oct 19, 2018

@jasmine321 always, and from only a wellness center or natural food store...not the poor quality stuff found at the supermarket or drug stores...

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1 reply
jasmine321 | @jasmine321 | Oct 19, 2018
In reply to @boomerexpert "@jasmine321 always, and from only a wellness center or natural food store...not the poor quality stuff..." + (show)
@boomerexpert

@jasmine321 always, and from only a wellness center or natural food store...not the poor quality stuff found at the supermarket or drug stores...

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Thank you. I’ll follow your advice

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ameliar | @ameliar | Oct 21, 2018
In reply to @Paula_MAC2007 "I was diagnosed with MAC in Feb 2008 (after having intermittent symptoms for 3 years that..." + (show)
@Paula_MAC2007

I was diagnosed with MAC in Feb 2008 (after having intermittent symptoms for 3 years that got progressively worse). For 4 yrs, 3 months (Feb 2008 - April 2012), I was on the 3 standard drugs for MAC . I had some side effects from the drugs but gradually they went away or I learned how to deal with them. If my routine got out of whack (like on vacation) I suffered.

Over the years, I grew to feel like my old self - although as a high energy person, I was somewhat sluggish from the medication. Last April, I negotiated with my pulmonologist to go off the drugs. What a relief! Was like a weight had been lifted . . . I felt much lighter and less sluggish. While my MAC was not gone, my lesions had shrunk over the years of antibiotics. I considered the MAC as hibernating or resting!

Eight months later (December 2012) I began experiencing the cough (which at times results in spasms) and tiredness. Since Feb, I have been on two different antibiotics from my Internist - to rule out a severe sinus infection. No dice! Yesterday (March 2013) I saw my pulmonologist who, before assuming it is MAC and resuming the meds, wants to do a lung lavage and CT scan. Will do this within the next two weeks.

Incidentally, my Internist did a lot of blood workup recently and my Vitamin D is very low. Am now taking 50,000 IU for 12 weeks and then repeat the tests. My pulmonologist yesterday mentioned there is some connection between Vitamin D and lung issues but it's not real concrete yet.

So my MAC appears to no longer be 'resting'.

I will follow this blog with great interest. I live in Wisconsin, in the part of the upper Midwest where MAC is found. Yet MAC is not found in some other Great Lake states. Sure is a mystery.

I WOULD LOVE TO GET IN A STUDY WITH OTHERS WITH MAC!!!!!

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I have recently been diagnosed with MAC.. Interesting... my Vit D level has been very low and I have just been prescribed 50,000 units one time a week. Did your Vit D level return to normal after this regiment? I am sorry to hear your MAC has returned.

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