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.

jr2366 (Jennifer) | @jr2366 | Dec 18, 2020
In reply to @rvan "JR , what were your symptoms prior to your diagnosis ?" + (show)
@rvan

JR , what were your symptoms prior to your diagnosis ?

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I was sick had a bad cold Which got worse and when I went for X-rays dr told me I had pneumonia back in dec 2019. I went On antiobiotics , predisone 3 times went I went for ct scans , xrays , pet scans, A lung biopsy that hurt a lot and bronchoscopy This All determined Mac lung disease I’ve been through a crazy year also found new pulmonologist where I live and now I’m on Arikayce 3 days now

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 19, 2020
In reply to @rvan "JR , what were your symptoms prior to your diagnosis ?" + (show)
@rvan

JR , what were your symptoms prior to your diagnosis ?

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Welcome, @rvan. Have you been diagnosed with MAC or do you suspect you might have it?

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3 replies
rvan | @rvan | Dec 19, 2020
In reply to @colleenyoung "Welcome, @rvan. Have you been diagnosed with MAC or do you suspect you might have it?" + (show)
@colleenyoung

Welcome, @rvan. Have you been diagnosed with MAC or do you suspect you might have it?

Jump to this post

I suspect I might , will know better after a bronchoscope in the new year 🙁

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irene5 Irene Estes | @irene5 | Dec 19, 2020
In reply to @jr2366 "Hi Irene so I saw a pulmonologist since last December I was sick with pneumonia I..." + (show)
@jr2366

Hi Irene so I saw a pulmonologist since last December I was sick with pneumonia I then took several rounds of Antiobiotics predisone and several xrays Cat scans pet scans lung biopsy and even bronchoscopy at Sloan In August all in one year ugggh to see why my scans were coming back as something was inflamed inside lung and I had a nodule that’s was Little larger than 1st few scans . I’ve done it all they determined it is Mac, so I took all my scans to a pulmonologist where I live and he read my scans and paperwork and said I need to be on arikayce for 12-18 months so I’m on this for 3 days now I have a ways to go . I also have lung pain right side I told my dr that as well, he said yes that can happen Irene please get back to me thanks you’ve been helpful to me I feel alone in this but now I see there’s others. Thanks Irene

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@jr2366 You are never alone with this group Jennifer! Lung nodules with nodular MAC are common and a sign of inflammation. The Arikayce plus the BIg 3 ( 2 in my case) has resolved my largest nodule. Irene

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Jennifer | @megan123 | Dec 19, 2020
In reply to @jr2366 "Thank you so much I was just told filtered water from my refrigerator is good as..." + (show)
@jr2366

Thank you so much I was just told filtered water from my refrigerator is good as long as you change the filter and I wash my vegetables with boiled water. I also was told to clean my shower head with with bleach or vinegar. And if you’re cannot remove it put a bag around it with the liquid in it . I’m so new to all this I’m trying to learn this as I go along. Let’s keep in touch we will learn from each other . I take Arikayce everyday through a mini nebulizer. I have to do this for 1 year to 18 months , Not happy about this I only started 3 days ago but I have to in order to get rid of this MAC thanks so much for your input Jennifer

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@jr2366..Hi there...please be careful drinking water from your fridge..it holds slot of MAC bacteria, including Absessus..if you are filtering make sure you have a 0.2 micron filter attached..I’d still be nervous to drink water from my fridge

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ginak | @ginak | Dec 20, 2020
In reply to @jr2366 "Thank you so much I was just told filtered water from my refrigerator is good as..." + (show)
@jr2366

Thank you so much I was just told filtered water from my refrigerator is good as long as you change the filter and I wash my vegetables with boiled water. I also was told to clean my shower head with with bleach or vinegar. And if you’re cannot remove it put a bag around it with the liquid in it . I’m so new to all this I’m trying to learn this as I go along. Let’s keep in touch we will learn from each other . I take Arikayce everyday through a mini nebulizer. I have to do this for 1 year to 18 months , Not happy about this I only started 3 days ago but I have to in order to get rid of this MAC thanks so much for your input Jennifer

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@jr2366 Hi Jennifer, about the filtered water from fridge. There was a discussion on here a while back about this with research articles that state, filtered water from fridge is NOT safe, no matter how much you change your filters. I’m sorry I don’t know how to go back and find it, maybe someone else can jump in who remembers. Because the fridge holds water in the line close to the motor which keeps it at an optimum temperature to colonize.
Also, the filters have to be able to filter to .2 micros, (I think). The discussion also included water coolers and coffee makers like Keureg and such. I hope other members who remember this discussion will add to this post.
Perhaps things have changed in the past 4 years and I haven’t kept up to date.
Gina

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1 reply
ginak | @ginak | Dec 20, 2020
In reply to @jr2366 "Hi Sue I was sick back in December 2019 and every X-ray and ct scan I..." + (show)
@jr2366

Hi Sue I was sick back in December 2019 and every X-ray and ct scan I took it showed fuzziness in my scans, inflamed so My pulmonologist put me on antiobiotics 3 rounds of it and predisone pills did repeat ct scans and they were showing nodule slightly larger still inflamed so they decided to do a lung biopsy so I did that dr recommend surgery to cut out nodule that was slightly larger I said no way Im Going to Manhattan to Sloan Because now I’m feeling pain so I did I went in To do this last August to see what was going on and for a second opinion thank god I did , dr told me let’s do a bronchoscopy so I did that and that’s when he said it was MAC I then followed up with another pulmonologist where I live Cause my first one I didn’t trust and My new pulmonologist he said take Arikayce so it’s been 3 days on it so far Praying I get better he says I need to be on this for 12-18 months I had training today for it to make sure I was doing it correctly when I clean unit and if I’m using nebulizer correctly. Write me back sue if you could thanks how are you feeling tell me about your experience as well I’m glad we can chat with each other I feel little better that we could do this . Thanks

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@jr2366 Your story sounds a lot like mine. Except I had that lung surgery at NYU to cut out the nodule and do the biopsy. It was very painful, especially every time I coughed! That’s how MAC/MAI was diagnosed. I’ve never gone on any meds because my yearly CT scans show the nodules “wax and wane” and are relatively small, also, aside from the cough, I have no symptoms from MAC.

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1 reply
lindam272 | @lindam272 | Dec 20, 2020

@jr2366 You can search this site for keywords by clicking on the magnifying glass at the top of the page and typing the word you want to search. It will bring up all times it was mentioned.
Filtered water from the refrigerator is one of the highest sources of NTM because of the warmth the mechanism in the refrig generates to bring you cold water and ice. I never drink anything but bottled water no matter where I am and I never use ice anymore.
Potting soil is another high source of NTM so I always wear a mask now when potting plants. There are many sources of information by Googling NTM, MAC, bronchiectasis, etc. This forum is an incredibly good source and will lead you to other sources as well by reference. There were just 19 pages when I found this connection. So grateful for everyone who has provided information! @lindam272

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jr2366 (Jennifer) | @jr2366 | Dec 21, 2020
In reply to @colleenyoung "Welcome, @rvan. Have you been diagnosed with MAC or do you suspect you might have it?" + (show)
@colleenyoung

Welcome, @rvan. Have you been diagnosed with MAC or do you suspect you might have it?

Jump to this post

Colleen I’ve been diagnosed with MAC

REPLY
jr2366 (Jennifer) | @jr2366 | Dec 21, 2020
In reply to @ginak "@jr2366 Hi Jennifer, about the filtered water from fridge. There was a discussion on here a..." + (show)
@ginak

@jr2366 Hi Jennifer, about the filtered water from fridge. There was a discussion on here a while back about this with research articles that state, filtered water from fridge is NOT safe, no matter how much you change your filters. I’m sorry I don’t know how to go back and find it, maybe someone else can jump in who remembers. Because the fridge holds water in the line close to the motor which keeps it at an optimum temperature to colonize.
Also, the filters have to be able to filter to .2 micros, (I think). The discussion also included water coolers and coffee makers like Keureg and such. I hope other members who remember this discussion will add to this post.
Perhaps things have changed in the past 4 years and I haven’t kept up to date.
Gina

Jump to this post

Thanks Gina I guess my Kerig is a no no

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