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.

Katherine, Alumni Mentor | @katemn | Jun 6, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

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@ruhdesb, I sent your post to Colleen .. I'm sure she will take care of it .. AND perhaps let us know why you could not take care of it? Hope all will go well for you! Katherine

REPLY
Barbara Ann | @bschaper2 | Jun 6, 2017

Hi, all, I was diagnosed with MAC infection in January while in the hospital with double pneumonia in January (24 days in, then 9 days in February for pseudomonas). I am just north of Orlando, 67 years old. Who is a good physician to request at Mayo Clinic in Jacksonville? Also, someone on here is from Orlando, going to a physician there for treatment but I cannot find the posting again. Katherine, you are such a good person and resource, thank you. And the posting here really made me think so thank you all for posting. My ID and my pulmonary physicians haven't suggested anything beyond asthma meds, nebulizer and the 3 drugs (500 mg azithromycin, 400 mg ethambutol, 300 rifampin 3 x week). I have to tell you, while in the hospital, my nebulizer mouthpiece was never cleaned, just thrown in a bag for the next visit. I did write up a page on myself but decided just to briefly post this instead. Recommendation on a ID physician, please? Orlando person, are you still out there?

Thanks - Barb

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tdrell | @tdrell | Jun 7, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

Jump to this post

Windwalker/Terri M....amazingly the local ID Dr and Pulmonologist wanted me to immediately begin the 3 antibiotics.....I had to switch to a new local Pulmonologist who agreed with NJH That I did not need Antibiotics.... also the original Pulonologist was hostile that I had sleep study at NJH tdrell

REPLY
Barbara Ann | @bschaper2 | Jun 7, 2017
In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

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Hi, Katherine and all here - I have had no problem with taking the 3 drugs for the last 90 days but have had problem with some drugs in the past, so it really makes sense what you say, thank you. With reading all your information here, I have ordered the mask, the sterilizer, and the bags for the microwave from Amazon and they are being shipped. Do you ever use your nebulizer or Aerobik mouth pieces more than once? I also do the Airlife spirometer with the Aerobik 3 times a day which I hope is enough -- now taking mouth pieces off both and cleaning. I will be replacing my hot water heater which is about 20 years old next week and I did get a new refrigerator 2 weeks ago so I assume that it doesn't have MAC growing in it yet. This site is great, the people here are so supportive. Thanks - Barb

REPLY
JK | @contentandwell | Jun 7, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

Jump to this post

@tdrell I have just about had it with most of my local doctors. I am so dismayed, who I thought was great and caring initially, seem not to be all now. I liked him but now I think I really have to change.
JK

REPLY
terryb1 | @128128terry11t | Jun 7, 2017
In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

Jump to this post

I just read that drinking water from filtered water from refrigerator is not recommended. It has something to do with the warmth created by the machinery in the unit needed to filter the water; the critters thrive in that environment. I started to drink spring water-- not sure that is the answer. I am rinsing the aerobika and nebulizer in distilled water after soaking in regular warm sudsy regular water. Wondering if that (using distilled water to rinse) is necessary. Would appreciate others' thoughts. Thanks to Katherine I, too, have the mask, the sterilizer, and the bags. Katherine: you could have a new career -- advisor to anyone with MAC. You would eventually have all persons with MAC world-wide. Terry

REPLY
Barbara Ann | @bschaper2 | Jun 7, 2017
In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

Jump to this post

Terry - what about ice cubes, do you make them from spring water? I know that might be a dumb thing to ask, but I use a lot of ice cubes. Thanks - Barb

REPLY
terryb1 | @128128terry11t | Jun 7, 2017
In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

Jump to this post

I just read it so haven't even thought that far. Now that I do, I would make them from spring water NOT the refrigerator water. Another thought: I want to look into getting a shower head gizmo (don't know what to call it) for my bathtub in order to wash and rinse my hair. Anyone have a recommendation? I have been taking showers and might as well go "all in" (well there is no such thing in fighting MAC) and return to the old days of using a tub. When traveling, I will use showers-- don't trust the tub to be clean! No such thing as a dumb question if there were, I would be Queen of asking them. Terry

REPLY
lindam272 | @lindam272 | Jun 7, 2017
In reply to @lindam272 "So I called my doctor's office and said that I wanted a chest xray done. It's..." + (show)
@lindam272

So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M

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I haven't seen any previous xrays since being diagnosed, only CT scans. I know I have had them done, back when I had Valley Fever in 2008 and I think I had one done somewhere in between then and now. I had 2 nodes in my left lung in the 2008 one. I feel better so wanted to see if it would show improvement on the xray. I thought it would be helpful mentally if I saw improvement as I continue to take these meds.

REPLY
lindam272 | @lindam272 | Jun 7, 2017
In reply to @lindam272 "So I called my doctor's office and said that I wanted a chest xray done. It's..." + (show)
@lindam272

So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M

Jump to this post

I will mention this at my appt. I had a culture taken a couple of months ago but it was just on the day I went in for my bloodwork - not 3 days in a row.

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