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.

heathert | @heathert | Sep 21, 2017

Thanks @kiemen very interesting article, so good to know there are smart people out there trying to find us a cure.

REPLY
1 reply
Jo Ann K | @jkiemen | Sep 22, 2017
In reply to @heathert "Thanks @kiemen very interesting article, so good to know there are smart people out there trying..." + (show)
@heathert

Thanks @kiemen very interesting article, so good to know there are smart people out there trying to find us a cure.

Jump to this post

We should ask our MD’s about this article

JoAnn K

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nick52 | @nick52 | Sep 23, 2017
In reply to @auntnanny "I'm not sure if this is the place to post but..... hopefully some will have answers..." + (show)
@auntnanny

I'm not sure if this is the place to post but..... hopefully some will have answers for me. I have bronchiectasis and went through a "flare" -- took clindamycin as that had been the last antibiotic used but this time, it really didn't seem to work. I contacted Mayo's and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I'll fax this report to Mayo's Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you.....

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I love kumbucha too.

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nick52 | @nick52 | Sep 23, 2017
In reply to @ginak "Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps..." + (show)
@ginak

Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps no one has been posting that much any more. Just checking in to be sure I'm still connected.
Thanks
Gina K

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Does anyone has pain in the back where lungs are upper part?  

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nick52 | @nick52 | Sep 23, 2017
In reply to @maryjo2sell "Hi Terri- Just hard to find time to do everything lately. Seems by the time you..." + (show)
@maryjo2sell

Hi Terri- Just hard to find time to do everything lately. Seems by the time you do the nebulizer an hour has gone by. I do the laundry, shop for groceries, clean the house, take care of my grand daughter and clear the lungs about 2PM. Pretty much ends the day except for dinner and dishes.
Far as fungus, had a couple colonies of exophiala, had the streptococcus and haemophilus influenzae. It seems that the strep and the influenza have a tendency to go together. Since that time, I took doxy, levoquin and keflex so something knocked them out because they did not show up in the next sputum sample.
I read my oxygen level before going to bed and if it is below 95% i use the oxygen for awhile. I have to admit it does help me sleep better. So far I have not had to have a nighttime reader.
Just rereading your post and see you had mentioned the "exophaila". The doctor also did not mention it to me but It did not show up again so probably killed it with ABX. I would figure they do not want to freak us out too much by mentioning that we also have a "black fungus" growing in our lungs! Especially if they feel the ABX will knock it out. They cultured the mycobacterium and it did not grow, so that was great news.
At the moment, feeling pretty good. I am like you though, waiting for the humidity and heat to go down. Being outside in it is difficult on the breathing.
Love the air conditioning!!!!
Fondly, Mary Jo

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Oh wow In. Palm Arbor . It would be nice to meet you this winter boomerexpert!

REPLY
nick52 | @nick52 | Sep 23, 2017
In reply to @maryjo2sell "Hi Terri- Just hard to find time to do everything lately. Seems by the time you..." + (show)
@maryjo2sell

Hi Terri- Just hard to find time to do everything lately. Seems by the time you do the nebulizer an hour has gone by. I do the laundry, shop for groceries, clean the house, take care of my grand daughter and clear the lungs about 2PM. Pretty much ends the day except for dinner and dishes.
Far as fungus, had a couple colonies of exophiala, had the streptococcus and haemophilus influenzae. It seems that the strep and the influenza have a tendency to go together. Since that time, I took doxy, levoquin and keflex so something knocked them out because they did not show up in the next sputum sample.
I read my oxygen level before going to bed and if it is below 95% i use the oxygen for awhile. I have to admit it does help me sleep better. So far I have not had to have a nighttime reader.
Just rereading your post and see you had mentioned the "exophaila". The doctor also did not mention it to me but It did not show up again so probably killed it with ABX. I would figure they do not want to freak us out too much by mentioning that we also have a "black fungus" growing in our lungs! Especially if they feel the ABX will knock it out. They cultured the mycobacterium and it did not grow, so that was great news.
At the moment, feeling pretty good. I am like you though, waiting for the humidity and heat to go down. Being outside in it is difficult on the breathing.
Love the air conditioning!!!!
Fondly, Mary Jo

Jump to this post

Is Palm Harbor in Pinellas county? We live in Largo

REPLY
boomerexpert | @boomerexpert | Sep 23, 2017
In reply to @maryjo2sell "Hi Terri- Just hard to find time to do everything lately. Seems by the time you..." + (show)
@maryjo2sell

Hi Terri- Just hard to find time to do everything lately. Seems by the time you do the nebulizer an hour has gone by. I do the laundry, shop for groceries, clean the house, take care of my grand daughter and clear the lungs about 2PM. Pretty much ends the day except for dinner and dishes.
Far as fungus, had a couple colonies of exophiala, had the streptococcus and haemophilus influenzae. It seems that the strep and the influenza have a tendency to go together. Since that time, I took doxy, levoquin and keflex so something knocked them out because they did not show up in the next sputum sample.
I read my oxygen level before going to bed and if it is below 95% i use the oxygen for awhile. I have to admit it does help me sleep better. So far I have not had to have a nighttime reader.
Just rereading your post and see you had mentioned the "exophaila". The doctor also did not mention it to me but It did not show up again so probably killed it with ABX. I would figure they do not want to freak us out too much by mentioning that we also have a "black fungus" growing in our lungs! Especially if they feel the ABX will knock it out. They cultured the mycobacterium and it did not grow, so that was great news.
At the moment, feeling pretty good. I am like you though, waiting for the humidity and heat to go down. Being outside in it is difficult on the breathing.
Love the air conditioning!!!!
Fondly, Mary Jo

Jump to this post

@nick52 indeed just as is Largo...surprised you haven't heard of Palm Harbor!

REPLY
boomerexpert | @boomerexpert | Sep 23, 2017
In reply to @maryjo2sell "Hi Terri- Just hard to find time to do everything lately. Seems by the time you..." + (show)
@maryjo2sell

Hi Terri- Just hard to find time to do everything lately. Seems by the time you do the nebulizer an hour has gone by. I do the laundry, shop for groceries, clean the house, take care of my grand daughter and clear the lungs about 2PM. Pretty much ends the day except for dinner and dishes.
Far as fungus, had a couple colonies of exophiala, had the streptococcus and haemophilus influenzae. It seems that the strep and the influenza have a tendency to go together. Since that time, I took doxy, levoquin and keflex so something knocked them out because they did not show up in the next sputum sample.
I read my oxygen level before going to bed and if it is below 95% i use the oxygen for awhile. I have to admit it does help me sleep better. So far I have not had to have a nighttime reader.
Just rereading your post and see you had mentioned the "exophaila". The doctor also did not mention it to me but It did not show up again so probably killed it with ABX. I would figure they do not want to freak us out too much by mentioning that we also have a "black fungus" growing in our lungs! Especially if they feel the ABX will knock it out. They cultured the mycobacterium and it did not grow, so that was great news.
At the moment, feeling pretty good. I am like you though, waiting for the humidity and heat to go down. Being outside in it is difficult on the breathing.
Love the air conditioning!!!!
Fondly, Mary Jo

Jump to this post

Would love to! Contact me here when you're ready for a get together cocktail!

REPLY
nick52 | @nick52 | Sep 23, 2017
In reply to @maryjo2sell "Hi Terri- Just hard to find time to do everything lately. Seems by the time you..." + (show)
@maryjo2sell

Hi Terri- Just hard to find time to do everything lately. Seems by the time you do the nebulizer an hour has gone by. I do the laundry, shop for groceries, clean the house, take care of my grand daughter and clear the lungs about 2PM. Pretty much ends the day except for dinner and dishes.
Far as fungus, had a couple colonies of exophiala, had the streptococcus and haemophilus influenzae. It seems that the strep and the influenza have a tendency to go together. Since that time, I took doxy, levoquin and keflex so something knocked them out because they did not show up in the next sputum sample.
I read my oxygen level before going to bed and if it is below 95% i use the oxygen for awhile. I have to admit it does help me sleep better. So far I have not had to have a nighttime reader.
Just rereading your post and see you had mentioned the "exophaila". The doctor also did not mention it to me but It did not show up again so probably killed it with ABX. I would figure they do not want to freak us out too much by mentioning that we also have a "black fungus" growing in our lungs! Especially if they feel the ABX will knock it out. They cultured the mycobacterium and it did not grow, so that was great news.
At the moment, feeling pretty good. I am like you though, waiting for the humidity and heat to go down. Being outside in it is difficult on the breathing.
Love the air conditioning!!!!
Fondly, Mary Jo

Jump to this post

No problem! Thanks boomerexper!

REPLY
maryjo2sell | @maryjo2sell | Sep 24, 2017
In reply to @maryjo2sell "Hi Terri- Just hard to find time to do everything lately. Seems by the time you..." + (show)
@maryjo2sell

Hi Terri- Just hard to find time to do everything lately. Seems by the time you do the nebulizer an hour has gone by. I do the laundry, shop for groceries, clean the house, take care of my grand daughter and clear the lungs about 2PM. Pretty much ends the day except for dinner and dishes.
Far as fungus, had a couple colonies of exophiala, had the streptococcus and haemophilus influenzae. It seems that the strep and the influenza have a tendency to go together. Since that time, I took doxy, levoquin and keflex so something knocked them out because they did not show up in the next sputum sample.
I read my oxygen level before going to bed and if it is below 95% i use the oxygen for awhile. I have to admit it does help me sleep better. So far I have not had to have a nighttime reader.
Just rereading your post and see you had mentioned the "exophaila". The doctor also did not mention it to me but It did not show up again so probably killed it with ABX. I would figure they do not want to freak us out too much by mentioning that we also have a "black fungus" growing in our lungs! Especially if they feel the ABX will knock it out. They cultured the mycobacterium and it did not grow, so that was great news.
At the moment, feeling pretty good. I am like you though, waiting for the humidity and heat to go down. Being outside in it is difficult on the breathing.
Love the air conditioning!!!!
Fondly, Mary Jo

Jump to this post

Hi Terri .Sorry I took so long to reply! Evacuated, then tried to return home, but no water or electric so headed back to a hotel. But condo is fine. Thank goodness. Glad your place was okay! Did not look good there for awhile.
Guess the excitement and travel did not do well for me. Ended up getting sick and had to bring in my big guns- Levoquin and prednisone. But they helped!
Just curious- on another site, another Bronch person just moved to Vegas for drier air. She lived in South Carolina, very humid. She said she already felt better and less sputum. Would love it if anyone knew if this could help? I looked all over the internet but did not find any proof. Wouldn't less "stuff" be fabulous?
Thanks for your thoughts Terri!
Fondly, Mary Jo

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