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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 18, 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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@nick52, have you had a bronchoscopy?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 18, 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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@pfists Shari, OMG, 8 times with pseudomonas! Are you kidding me? Could you maybe be re-infecting yourself from something in your immediate environment?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 18, 2017

@kaystrand Great questions for @tdrell to take to NJH for the seminar.

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8 replies
heathert | @heathert | Sep 19, 2017
In reply to @lindam272 "If anyone is interested, here is the information on a webinar taking place tomorrow that addresses..." + (show)
@lindam272

If anyone is interested, here is the information on a webinar taking place tomorrow that addresses the practical points of NTM:

Nontuberculous Mycobacteria - Practical Points

As part of NTM Lung Week at the ATS, and in conjunction with PAR partner, NTM Info & Research, the American Thoracic Society presents a live webinar on Thursday, September 14th, 2017 at 2:00 p.m. ET titled "Nontuberculous Mycobacteria - Practical Points."

Register Now!

We are so fortunate to have Kevin Fennelly, MD, MPH, of the National Heart, Lung & Blood Institute (NHLBI) presenting this year. If you are a patient, family member, caregiver, physician or researcher, please don't miss this informative webinar.

Click on this link to register for the webinar:
https://attendee.gotowebinar.com/register/5428471810444967170
After registering, you will receive a confirmation email containing information about joining the webinar.
View System Requirements

Linda M

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@tdrell Hi It seems that pseudonomous is part and parcel of MAC quite often, I would like to ask the confrence if that is so and if MAC patients should have sputum checked often for pseud and other nasties, even if they do not have MAC colonising at the moment. Thanks Terri, Heather 🙂

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pfists | @pfists | Sep 19, 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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@windwalker
Yes it seems maybe once a year pseudomonas showes up maybe it was 6 times in the last 8 yrs. But if its catched early the meds work well. Usually you will cough up green phlegm with it.
Pseudomonas can be cultured in a couple of days and when treated quickly it doesn't seem to be such a problem.
I think it kinda stays in your system not sure. I also get aspergillus to show up frequently in sputum but they don't treat it always unless they think its colonizing. Because they say its in the air we breath so unless its colonizing they don't treat it.
Glad your back Terri!

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nick52 | @nick52 | Sep 19, 2017
In reply to @joan912 "My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big..." + (show)
@joan912

My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big 3, but later told him not to take any, if he won't take all 3. He had a bad reaction to Rifabutin, which caused chest pains. He asked if there was a substitute for that, but apparently not.

He had 2 CT Scans, one in March, the second in May. The second did show some improvement, but also diagnosed bronchiectasis, which the first Scan did not. He asked for another one this month. Now his doctor told him that he doesn't need another CT Scan at all, and, if anything, he could have a Chest X-ray. A chest X-ray cannot diagnose bronchiectasis so, to me, her response is outrageous. His doctor seems to be very ineffective and doesn't seem to care about his well-being. She never asks how he is, nor offer any solutions to his constant sputum. I'm afraid to ask for another pulmonologist at Kaiser, because I'm afraid they will back each other up, or at least not contradict each other.

Does anyone have experience with Kaiser? My husband wants to see numerous other pulmonologists in other cities and wants me to take time off from work (let alone spending a lot of money since it will all be out of pocket), to make appointments for him (he doesn't work). I simply cannot do so, since I have no backup for my job. I'm willing to travel to one place, maybe Mayo Clinic in Rochester, MN.

If I can stay local, does anyone have a recommendation for a well-respected, knowledgeable MAC doctor in the Bay Area of California?

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Did your husband take Clear Lungs! there is a lot of radiation in CTscan that is probably why your Dr dosn't want to take another one. The clear lung clears the sputum!

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nick52 | @nick52 | Sep 19, 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

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Sutton, how do they test you to know if you are positive or negative to the MAC

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shelby | @suttonmac2009 | 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

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I had a bronchoscopy done in the hospital. They can do a sputum test but it's not as accurate. I think if the sputum test is positive for MAC that's all they need but if it negative, they like to make sure with a bronchoscopy.

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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

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Dear Sutton,
I had sputum test which was negative! I have a broncho this friday. This is how they found out that I had a MAC by a lab analysis when I had a bronco. I have no symptom other than coffin sputum once and a while specially after a meal. I don't under why every one seem to be on antibiotics who has a Mac. I do not take antibiotic because my MAC specialist said there is a lot of secondary effect and they use that only as a last ressource. He says if my symptom gets worst and I have breathing problem then we will have to consider taking it. From what I read is everyone is put on antibiotics on this site and i wonder if it is because they all have secere symptom. I do not take antibiotic but my specialist recommended a professional probiotique. So I take Clear lungs 1 to 2 cap a day and 2 professional probiotic a day. I am doing really good with that. I have hardly sputum now and no synptoms.
I have another questions! When you have your ctscan do they see "tree in bud appearances" and nodules?
This might sound as a stupid questions but I wonder if everyone with a MAC has those. I have all my reports so I can read what they found. Thank you for your collaborations!

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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

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Sorry - coughing

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