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.

nick52 | @nick52 | Sep 21, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

Jump to this post

It was recommended that I drink no tab water. I ask the  Dr yesterday about pseudomonas and he said Pseudomonas is a bacteria in water. Do you know where you get pseudomonas? I had never heard about it. Me I had radiation. That could be the cause. I didn&apos;t

want to take radiation but my husband kind of insisted but I never took the Tamoxifen ( the anti estrogen.  I took Primerose Oil and still do. Did you had that bacteria?

REPLY
ling123 | @ling123 | Sep 21, 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

Jump to this post

@nick52 I know that bronchiectasis is irreversible/incurable. But I'm not sure that is the case with MAC. MAC is a bacteria infection. If your sputum test comes back negative for MAC, I would consider it being cured. But that does not mean you won't get re-infected. When you are diagnosed with bronchiectasis, you are very vulnerable for all kinds of bacterial infections. You may get MAC again, or you may get other types of infections. This may go on and on for the rest of your life. Maybe that is what the nurse meant by it staying for life. So you definitely need to clear out the mucus from your lungs as much as possible. Coughing may be annoying to you and others around you, but that is one way to expel mucus that is accumulated in your bronchial tubes. The sticky mucus is a hot bed for trapping various types of bacteria. @windwalker/Terri has suggested using a nebulizer and you are taking Clear Lung to resolve this issue. I think both are great suggestions that I will give them a try very soon.

REPLY
Jo Ann K | @jkiemen | Sep 21, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

Jump to this post

 

 

What do you drink instead of water/

Jo Ann

 

REPLY
ling123 | @ling123 | Sep 21, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

Jump to this post

@nick52 I don't know whom your question was directed to. For myself, I never had pseudomonas.

REPLY
nick52 | @nick52 | Sep 21, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

Jump to this post

Sorry Long I thought you had.

REPLY
nick52 | @nick52 | Sep 21, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

Jump to this post

Distilled water from the store.

REPLY
nick52 | @nick52 | Sep 21, 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

Jump to this post

What is Nebulizer?

REPLY
boomerexpert | @boomerexpert | Sep 21, 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 Hey fellow Floridian...I live in Palm Harbor!

REPLY
ling123 | @ling123 | Sep 21, 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

Jump to this post

@nick52 Take a look at this site: https://en.wikipedia.org/wiki/Nebulizer
Your pulmonary doctor should be able to prescribe one for you if you need it.

REPLY
irene5 Irene Estes | @irene5 | Sep 21, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

Jump to this post

My doctor at Vanderbilt says that as physicians become more knowledgeable about this disease, they will not be hesitant to treat it.

REPLY
View MoreView Less
Please sign in or register to post a reply.