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.

cowboy1997 | @cowboy1997 | Nov 14, 2016
In reply to @tdrell "boomerexpert....awesome news....and bronchoscopy is not bad....especially if he/she does alot of them...keep us posted ...good for..." + (show)
@tdrell

boomerexpert....awesome news....and bronchoscopy is not bad....especially if he/she does alot of them...keep us posted ...good for you !!!tdrell

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Katherine what website would I go to for Reflux Surgery and Stimulater for Fecal Incontience? Thanks

REPLY
Kathryn S Wilbur | @kwilbur | Nov 14, 2016
In reply to @kwilbur "I haven't been contributing as much to this forum as I am in limbo about my..." + (show)
@kwilbur

I haven't been contributing as much to this forum as I am in limbo about my lung condition. I spent half a day in the hospital expecting to have a biopsy of a nodule 9 mm - only to be sent home because the radiologist was afraid of hitting the wall of my lung and my having a collapsed lung. While at the hospital, I had another cscan done and the nodule had gotten small 7 mm , the size it was in June.

Oddly enough, I have stopped coughing up phlegm too - or very little. I was getting sick alot at the beginning of the school year which was treated with antiobiotics. Then I had the flu shot and I really don't know what is going on other than I do know I have bronchiecticus which is a constant.

I am able to keep up with a long school day, but don't do any work once I am home - about 6 p.m. Today I pressure washed my house - well with a light weight Home Depot system and a hose - and was able to keep up a strong pace for six hours. I only pray I stay on this path.

I know I have to remain vigilant but spending every day worrying is a waste of quality life. I was already in a mindset that I had lung cancer which now I truly doubt. It's not worth worrying about possible outcomes until they are a fact. I wish you all good health and stamina as we head into the holiday season. Kathryn

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Thanks so much. That was quite an experience, being ready, prepped for a biopsy and then sent home. $4,000 later!

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Katherine, Alumni Mentor | @katemn | Nov 14, 2016
In reply to @tdrell "boomerexpert....awesome news....and bronchoscopy is not bad....especially if he/she does alot of them...keep us posted ...good for..." + (show)
@tdrell

boomerexpert....awesome news....and bronchoscopy is not bad....especially if he/she does alot of them...keep us posted ...good for you !!!tdrell

Jump to this post

Cowboy, I really did not know an answer for you so went higher up to my "boss" .. this is the response I got .. hope it is helpful! Hugs to you! Katherine

Recommend that he join the conversations in the Digestive Health group
https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/
Where there are several discussion happening on these topics. Kanaaz (@kanaazpereira) is the moderator of that group and will help get him connected.

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imeehaigt | @imeehaigt | Nov 14, 2016

Katherine, I dont have cataract.
Anyway I just watch the video of National Jewish about NTM and Bronchaectasis indeed it is verg helpfull and informative. I learned the importance of airways clearance. Anyone who used Aeobika? Pls let me know if this device ia effective. Im not sure if this is available here in the philippines but Im planning to buy one.

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12 replies
tdrell | @tdrell | Nov 14, 2016
In reply to @tdrell "boomerexpert....awesome news....and bronchoscopy is not bad....especially if he/she does alot of them...keep us posted ...good for..." + (show)
@tdrell

boomerexpert....awesome news....and bronchoscopy is not bad....especially if he/she does alot of them...keep us posted ...good for you !!!tdrell

Jump to this post

Katemn....the re the refridg water question is off my list for NJH tdrell

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imeehaigt | @imeehaigt | Nov 14, 2016
In reply to @imeehaigt "Hi @tdrell I work in a call center. I only had CT scan, xray, afb culture,..." + (show)
@imeehaigt

Hi @tdrell I work in a call center. I only had CT scan, xray, afb culture, sputum culture and broncoschopy. I dont smoke and dont have asthma. When I was diagnosed with bronchaectasis in 1997 my pulmo never explained to me he just based his diagnosis on xray and afb culture and I took anti TB drug for almost 3 years. I was never diagnosed TB but he said the treamemt is same as TB. After 1 month of taking meds I stopped coughing and seldom had cough for 10 years I though everything was OK I was cured. It started back when I started to work in a call center I suspect that since I work on night shift and having trouble sleeping on daytime my immune system begun to drop thats why I got an NTM. Im planning to find a day shift job to see if this will help. THANKS!

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@tdrell I just watch the video and thank you soo much!!! Im planning to share it with my previous pulmonologist.

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tdrell | @tdrell | Nov 14, 2016
In reply to @kwilbur "I haven't been contributing as much to this forum as I am in limbo about my..." + (show)
@kwilbur

I haven't been contributing as much to this forum as I am in limbo about my lung condition. I spent half a day in the hospital expecting to have a biopsy of a nodule 9 mm - only to be sent home because the radiologist was afraid of hitting the wall of my lung and my having a collapsed lung. While at the hospital, I had another cscan done and the nodule had gotten small 7 mm , the size it was in June.

Oddly enough, I have stopped coughing up phlegm too - or very little. I was getting sick alot at the beginning of the school year which was treated with antiobiotics. Then I had the flu shot and I really don't know what is going on other than I do know I have bronchiecticus which is a constant.

I am able to keep up with a long school day, but don't do any work once I am home - about 6 p.m. Today I pressure washed my house - well with a light weight Home Depot system and a hose - and was able to keep up a strong pace for six hours. I only pray I stay on this path.

I know I have to remain vigilant but spending every day worrying is a waste of quality life. I was already in a mindset that I had lung cancer which now I truly doubt. It's not worth worrying about possible outcomes until they are a fact. I wish you all good health and stamina as we head into the holiday season. Kathryn

Jump to this post

Colleenyoung....please see my above correction...tdrell

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 14, 2016
In reply to @kwilbur "I haven't been contributing as much to this forum as I am in limbo about my..." + (show)
@kwilbur

I haven't been contributing as much to this forum as I am in limbo about my lung condition. I spent half a day in the hospital expecting to have a biopsy of a nodule 9 mm - only to be sent home because the radiologist was afraid of hitting the wall of my lung and my having a collapsed lung. While at the hospital, I had another cscan done and the nodule had gotten small 7 mm , the size it was in June.

Oddly enough, I have stopped coughing up phlegm too - or very little. I was getting sick alot at the beginning of the school year which was treated with antiobiotics. Then I had the flu shot and I really don't know what is going on other than I do know I have bronchiecticus which is a constant.

I am able to keep up with a long school day, but don't do any work once I am home - about 6 p.m. Today I pressure washed my house - well with a light weight Home Depot system and a hose - and was able to keep up a strong pace for six hours. I only pray I stay on this path.

I know I have to remain vigilant but spending every day worrying is a waste of quality life. I was already in a mindset that I had lung cancer which now I truly doubt. It's not worth worrying about possible outcomes until they are a fact. I wish you all good health and stamina as we head into the holiday season. Kathryn

Jump to this post

Brilliant. Thank you for following up @tdrell.

REPLY
tdrell | @tdrell | Nov 15, 2016
In reply to @kwilbur "I haven't been contributing as much to this forum as I am in limbo about my..." + (show)
@kwilbur

I haven't been contributing as much to this forum as I am in limbo about my lung condition. I spent half a day in the hospital expecting to have a biopsy of a nodule 9 mm - only to be sent home because the radiologist was afraid of hitting the wall of my lung and my having a collapsed lung. While at the hospital, I had another cscan done and the nodule had gotten small 7 mm , the size it was in June.

Oddly enough, I have stopped coughing up phlegm too - or very little. I was getting sick alot at the beginning of the school year which was treated with antiobiotics. Then I had the flu shot and I really don't know what is going on other than I do know I have bronchiecticus which is a constant.

I am able to keep up with a long school day, but don't do any work once I am home - about 6 p.m. Today I pressure washed my house - well with a light weight Home Depot system and a hose - and was able to keep up a strong pace for six hours. I only pray I stay on this path.

I know I have to remain vigilant but spending every day worrying is a waste of quality life. I was already in a mindset that I had lung cancer which now I truly doubt. It's not worth worrying about possible outcomes until they are a fact. I wish you all good health and stamina as we head into the holiday season. Kathryn

Jump to this post

Colleenyoung....thanks for the "Brilliant" Far from it....just shows a faulty memory on my part corrected with a search by Dr Google
Tdrell

REPLY
Katherine, Alumni Mentor | @katemn | Nov 17, 2016

@margaretg

Hello Margaret, Welcome! I am SO glad you found our Forum! I hope you don’t mind if I answer you on our Forum page rather than a private message .. because we have found that sharing with each other really HELPS each other!

I SO understand the fear when you are first diagnosed with MAC and that you must go on the antibiotics. When I was first diagnosed I was just terrified .. in part because I found ZERO places like this Forum to help me through the process of understanding the disease I had just been diagnosed with .. plus just what the journey ahead looked like. That was really why I made that initial post to Mayo in 2011.

Margaret, I really encourage you .. as you have the time and energy to read the past pages of this Forum .. you will learn SO much about your disease .. plus your journey ahead. Plus you will find so many kind positive people here who are sharing your journey right now .. some ahead .. some finished .. but we are all on the same journey! I would especially encourage you to read an article I just recently happened upon .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. I have put the link below:
GOOD INFO http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
PLUS MORE GOOD INFO: http://maclungdisease.org/frequently-asked-questions

Since you have not started your meds yet .. I would recommend that you request that you start ONE antibiotic at a time for ONE WEEK .. or at LEAST 4 days before adding a second antibiotic .. so you can tell EXACTLY which/what antibiotic is causing ANY potential side effect and you can isolate it .. hopefully watching for a side effect dwindling etc. THEN introduce a SECOND antibiotic. Frankly WE are in the driver’s seat in our own lives .. our own bodies. Take charge and request that type of schedule if you want it! Plus .. has your doctor told you to get the below baseline testing? If you read back you will see them .. but I will repeat them in case you don’t get to the reading right away:
RECOMMENDED TESTING:
1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin - CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY

So Margaret .. again Welcome .. and keep coming back! Sending you a Hug in this tough time .. we all know what you are going through! Katherine

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