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.

Jo Ann K | @jkiemen | Sep 20, 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

 

On My CT there were tree-bud and nodules.  I am not familiar with Clear Lung

Jo Ann

 

REPLY
nick52 | @nick52 | Sep 20, 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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Auntnanny!

I feel like asking you :Have you tried clear lungs to keep your lungs clear and probiotic non dairy. Antibiotic destroys your  good bacteria also you know, you need to give your body good soldier to fight the bad as my doctor says.

I feel sad for you. All these problem. Take care of yourself. Don&apos;t take probiotic at the same time 4 hours before or after your antibiotic.  It is very safe! 

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 20, 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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@maryjo2sell Hi Mary Jo. I just returned from being evacuated from 'Irma'. It did not hit our town, although we were supposed to have a direct hit originally. I hope that you stayed safe and that your home is alright. PLEASE let me know how you are doing. You are in my thoughts, Terri

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nick52 | @nick52 | Sep 20, 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

Have you had a bronchoscopy to confirm it is negative?  

REPLY
Kay Strand | @kaystrand | Sep 20, 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

Nick
I tnihk the decision to treat MAC is based on a 3 pronged approach.sputum, how you feel and CT scan. A cavity showed on my scan and I was positive, not many symptoms. But cavities are treated aggressively. So is widely spread nodules maybe. So, the CT is a piece of the decision. Maybe your was clear.
Kay

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nick52 | @nick52 | Sep 20, 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

Hi Jo Ann, 

Clear lungs is an herbal med to clear lungs when it is congested. You can take one per day for prevention. It can be bought at a natural store or vitamine store. 

Ridge crest herbals(check on internet) it is efficient for me.

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ling123 | @ling123 | Sep 20, 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 Thanks for the information about Clear Lungs. Never heard of it before. Will definitely look into it. Just hope it helps expel the mucus and not just prevents it from coming up. The latter is actually bad for those of us with bronchiectasis because the excessive mucus accumulated in the bronchial tubes will trap bacteria and cause infections. The excess mucus needs to come out however you do to make that happen is helpful.

REPLY
nick52 | @nick52 | Sep 20, 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

Dear Ling 

I have tree buds, and bronchiestasis and nodules. I did the same no antibiotics but has lots of mucus. I have done the food allergy treatment NAET (check on internet) that has cut my mucus 90% I had mucus a little in my throat after

certain meal.it doesn&apos;t last long.  I cook all my food. Sugar, oil bothers a little bit but I am doing good with my clear lungs and probiotic non diary Dr Ahhiro. Thanks for your response! Appreciated

REPLY
Jennifer | @megan123 | Sep 20, 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

Cavities are not always treated aggressively.  Depends on so many factors.  My cavity reduced in size, so they will closely monitor it.

REPLY
pamelasc | @pamelasc1 | Sep 20, 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.....

Jump to this post

Hello - I had a very bad case of pseudemonas and it was treated with Levofloxacin (500 MG once a day for 10 days - it cleared up in 2 weeks. Hope this helps, Pamela in Boston

REPLY
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