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.

unicorn | @unicorn | Jun 10, 2017
In reply to @unicorn "Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably..." + (show)
@unicorn

Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably had it since the 70's. I've taken the meds for a few years, but disease always comes back, and the meds are barely tolerable now. Went to new doc at Mass. General who put me on a nebulizer breathing salt water vapor and albuterol, instead of taking meds. I think it just causes all the mucus to come up so one is less prone to infection. i actually haven't started it yet. i'vebeen off
pills for 5 months and am coughing up blood again. Seriously, so scary I just want a death pill, who wants to live like this?? I am 70 so I am sure that is a factor. xo hope all doing better!

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Well I'm going to go buy dessert! I don't think cholesterol is much of an issue anymore! Yes, i hope a cure is coming down the pipeline but I've been told the emphasis seems to be more on Hiv now. I'm not giving up.

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Katherine, Alumni Mentor | @katemn | Jun 10, 2017
In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)
@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

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@unicorn .. Christa I know well what you mean .. I initially lost 18% of my body weight .. I now kind of feel I am "skin and bones" .. not the attractive woman I feel I have always been .. BUT what is .. IS. I say my 3 "gratitudes" every morning and every night! ALL you have to do is look around you to be VERY clear how blessed we really are! Focus on what we HAVE AND ARE .. NOT what is not!! Keep up your good work and keep coming back .. we are here for you! Hugs! Katherine

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unicorn | @unicorn | Jun 10, 2017
In reply to @internalmeddoc "I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI...." + (show)
@internalmeddoc

I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI. Would just like to mention that a sputum sample to detect MAC (AFB stain) is just an initial probe and not nearly enough to detect this disease in most cases, even when such sputum samples are repeated 3 or more times which is a good idea. Culture (AFB culture) is better and bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples. MAC/MAI is not always an easy disease to detect. Hope this helps.

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Ok good to know, I thought now coughing up blood so what is the point of clearing mucus, but will keep it up. My doc wants me to do 1/2 hour of aerobics a day, plus nebulizer (with albuteral and salt water vapor) then acapella.

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unicorn | @unicorn | Jun 10, 2017

ha I know, everyone asks me if I model, like I am this thin on purpose! Stopped taking pills for 6 months, probably why coughing up blood again. i started pills again this morning, so hello cramps and weight loss. Going to doc soon.

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1 reply
Katherine, Alumni Mentor | @katemn | Jun 10, 2017
In reply to @internalmeddoc "I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI...." + (show)
@internalmeddoc

I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI. Would just like to mention that a sputum sample to detect MAC (AFB stain) is just an initial probe and not nearly enough to detect this disease in most cases, even when such sputum samples are repeated 3 or more times which is a good idea. Culture (AFB culture) is better and bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples. MAC/MAI is not always an easy disease to detect. Hope this helps.

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@unicorn .. Christa .. just MY opinion .. but I think the acapella is useless .. not nearly as effective as the Aerobica. Use my info and get the Aerobica .. as you get used to this system .. let me know and I'll share with you the system Mayo Clinic set me up with .. hooking up my Aerobica AND my saline nebulizer .. works slick! YES.. DO the aerobics!! Great for lung hygiene! This is just my opinion! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jun 10, 2017
In reply to @unicorn "ha I know, everyone asks me if I model, like I am this thin on purpose!..." + (show)
@unicorn

ha I know, everyone asks me if I model, like I am this thin on purpose! Stopped taking pills for 6 months, probably why coughing up blood again. i started pills again this morning, so hello cramps and weight loss. Going to doc soon.

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@unicorn .. Christa If you start the antibiotics .. use the one at a time schedule in past pages .. easier on your system! And don't forget the probiotics! Hugs! Katherine

REPLY
unicorn | @unicorn | Jun 10, 2017
In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)
@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

Jump to this post

Katherine, you said the blood comes and goes. all my docs say to go in the hospital when i bleed, but when i did, they just put me on an IV and gave me TB antibiotics until they ruled out TB then I went home. This morning I did not go in, I just dont want to . I don't think there is anything they can do. Do you always go in the hospital? or do you wait it out? I'm not asking what to do, just what others do. thanks xo

REPLY
Katherine, Alumni Mentor | @katemn | Jun 10, 2017
In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)
@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

Jump to this post

@unicorn .. Christa all I can say is YOU must be the judge. When I say MY blood comes and goes .. that is BECAUSE MINE is minor .. blood clots the size of say a nickle .. blood fresh and old colored sputum .. I am NOT talking about excessive blood! Mine frightened me in the beginning until I was told it was merely a symptom of the Bronchiectasis .. Dr. Aksamit asked me to DEFINE it .. a teaspoon .. etc. I have NEVER had even a teaspoon of blood .. so YOU must be the judge. Hope that helps you .. BUT I have to run to the ER enough with my husband .. I don't have ANY desire to run there for myself unless really NEEDED! When we DO go to ER .. the automatic procedure IS IV and antibiotics .. typical procedure!! You be your own best judge! Hugs! Katherine

REPLY
unicorn | @unicorn | Jun 10, 2017
In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)
@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

Jump to this post

Ok Katherine, mine wasn't much of a bleed this morning, but if it is a lot, I might go in. I will ask my docs if it is due to bronchiectasis or MAC. Not sure if the pills help the bronch but I feel better taking them if I bleed. I will try pills til I see the docs again. thanks xo

REPLY
Katherine, Alumni Mentor | @katemn | Jun 10, 2017
In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)
@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

Jump to this post

@unicorn .. Christa ONLY YOU know your body as well as you .. NOT me .. not your doctors .. YOU follow your own best instincts .. YOUR gut feeling! We will support you every step of the way .. we're rooting for you! Hugs! Katherine

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