(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 group.

@sueinmn

It sounds like you are doing everything right. Not everyone produces much mucus. My daughter has nearly none unless she has a cold. Unless your lungs are crackling, I don't think I would be too worried.
Have you discussed this with your docs?

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Thank you for setting my mind at rest. I have appt on the 19th with ID doctor. I am going to ask if I should be at 7% saline and about the Glutathione. I purchased the Aerobika and hope this helps a the Alcapala not doing much. So you know of there is a difference with the Arykace versus the Tobramycin? Thanks for answering as I feel so overwhelmed by all these meds.

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@poodledoc

Hello Helen @helenrivera You might try Airway Clearance to help bring up the mucous/sputum. For me this includes Nebulizing 7% saline in AM and 3% in PM. Aerobica device 2-3 times throughout the day. Once daily usually late morning I will do postural drainage (you can put that in the search bar at the top of this page and you will find many helpful things to try), then manual percussion on my chest followed by huff coughing then regular coughing and I almost always get up 1-3 tsp of sputum. Luckily I have been off antibiotics for almost 2 years and I have no symptoms other than the cough. My yearly CTs and breathing tests are all stable. I read your history and I see your case is more complicated but I really think the airway clearance will help you. I would invite you to view the following youtube video by Dr McShane.

Good luck to you, Bill

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Thank you Bill. I will start using a Aerobika this week as I ordered one. I am using a Message Gun and the Alcapala but little to nothing. Watching the video now. Thank you and prayers you stay off these meds. God Bless

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Hi Group. I'm on day 11 of inhaled Tobi. The more the treatment goes on my cough seems to get worse–makes throat sore. The amount of yellow, green, brownish sputum has increased. Seems like all this coughing could be making my bronchiectasis worse, i.e. damaging…. Sorry I'm rambling. It seems when I think I've got the treatment figured out I cough more. Anyway, let me ask this question. When you cough up anything of color–not pale stuff either but real color and thick, does that indicate there is infection still in my lungs? And, is it a case when I'll always cough up something? I do realize we're all different and this disease just confirms that for sure. God bless us all.

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@fdixon63

Hi Group. I'm on day 11 of inhaled Tobi. The more the treatment goes on my cough seems to get worse–makes throat sore. The amount of yellow, green, brownish sputum has increased. Seems like all this coughing could be making my bronchiectasis worse, i.e. damaging…. Sorry I'm rambling. It seems when I think I've got the treatment figured out I cough more. Anyway, let me ask this question. When you cough up anything of color–not pale stuff either but real color and thick, does that indicate there is infection still in my lungs? And, is it a case when I'll always cough up something? I do realize we're all different and this disease just confirms that for sure. God bless us all.

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Yes, the colored sputum is evidence of infection. The fact that you are coughing it up is a good thing – getting the bacteria and it's safe hiding place out of your lungs. Coughing is not going to damage your lungs, but it can give you sore ribs.
What are you doing for airway clearance to 1) thin the mucus (e.g. saline or Mucinex) and 2) move the mucus (e.g. Aerobika, postural drainage, etc)?
Sue

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@fdixon63

Hi Group. I'm on day 11 of inhaled Tobi. The more the treatment goes on my cough seems to get worse–makes throat sore. The amount of yellow, green, brownish sputum has increased. Seems like all this coughing could be making my bronchiectasis worse, i.e. damaging…. Sorry I'm rambling. It seems when I think I've got the treatment figured out I cough more. Anyway, let me ask this question. When you cough up anything of color–not pale stuff either but real color and thick, does that indicate there is infection still in my lungs? And, is it a case when I'll always cough up something? I do realize we're all different and this disease just confirms that for sure. God bless us all.

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@fdixon63…I agree with Sue on this. Coughing is important for clearing out the mucous where the bacteria was hiding. Your meds are working. I like postural drainage once or twice a day with comfort pillows to control the pain. Soothing teas such as throat coat help and Mucinex has always thinned the mucous for me. With my nebulizer tx and postural drainage, I have been MAC free for years and rarely have an exacerbation. You will get there, but the infected mucous has to come out first.

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@poodledoc

Hello Helen @helenrivera You might try Airway Clearance to help bring up the mucous/sputum. For me this includes Nebulizing 7% saline in AM and 3% in PM. Aerobica device 2-3 times throughout the day. Once daily usually late morning I will do postural drainage (you can put that in the search bar at the top of this page and you will find many helpful things to try), then manual percussion on my chest followed by huff coughing then regular coughing and I almost always get up 1-3 tsp of sputum. Luckily I have been off antibiotics for almost 2 years and I have no symptoms other than the cough. My yearly CTs and breathing tests are all stable. I read your history and I see your case is more complicated but I really think the airway clearance will help you. I would invite you to view the following youtube video by Dr McShane.

Good luck to you, Bill

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Hi Poodledoc
I have the same nebulizing routine. Do you know if there are any long term side effects of inhaling the hypertonic saline?

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@sueinmn

Yes, the colored sputum is evidence of infection. The fact that you are coughing it up is a good thing – getting the bacteria and it's safe hiding place out of your lungs. Coughing is not going to damage your lungs, but it can give you sore ribs.
What are you doing for airway clearance to 1) thin the mucus (e.g. saline or Mucinex) and 2) move the mucus (e.g. Aerobika, postural drainage, etc)?
Sue

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My usual airway clearance is twice a day 7% SC, once with aerobika attached. Exercise has gone by the wayside because of the heat. I tried postural drainage but it's too much because of my GERD. I've never thought of using the aerobika alone. Is it that useful? That would be great for travel–could do in a car. I also take NAC 600 mg twice a day. I've seen it posted that many use Mucinex. Do you use it all the time or just when there is exacerbation? Is that doctor recommended or just OKed? Would Mucinex be good to take at bedtime or late afternoon so could get stuff up before going to sleep or use in AM. Gosh, I have a lot of questions.
You are my Guru Sue. Thanks much to @egayle187 as well.
@fdixon63

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I too produce very little mucus each day. Ever since I started using 7% saline in the am followed by the Aerobika then 3% in the late afternoon again followed by the Aerobika. I also use Albuterol 2 or 3 times a day and walk every morning. I still take the Big 3 but hope to stop taking them after I get 2 more negative sputum samples.

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@fdixon63

My usual airway clearance is twice a day 7% SC, once with aerobika attached. Exercise has gone by the wayside because of the heat. I tried postural drainage but it's too much because of my GERD. I've never thought of using the aerobika alone. Is it that useful? That would be great for travel–could do in a car. I also take NAC 600 mg twice a day. I've seen it posted that many use Mucinex. Do you use it all the time or just when there is exacerbation? Is that doctor recommended or just OKed? Would Mucinex be good to take at bedtime or late afternoon so could get stuff up before going to sleep or use in AM. Gosh, I have a lot of questions.
You are my Guru Sue. Thanks much to @egayle187 as well.
@fdixon63

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Mucinex – well…my current pulmonologist said she is not sure it does me much good, but…
I have taken guaifenesin for almost 40 years, twice a day. It originally was to help thin the secretions that were building up in my ears and sinuses, causing me up to 10 ear and/or sinus infections per year. When I got tubes in my ears at age 35, the fluid that was in my ear was actually thick enough to clog the opening & need to be flushed out by the doc. The ENT, who ended up treating 3 generations of my family, assured me it was not harmful to take guaifenesin all the time, and I have had no ill effects that I know of.

Because Mucinex is pricy, even when ordered in quantity on-line, I have tried to cut back or quit it a time or two. Not my best decision – each time it has resulted in an ear infection or increased lung congestion.

So, if you still feel that your mucus is thick, in spite of NAC and saline, it would be worth a try. I mention Mucinex by name brand because I use the long-acting 600mg guaifenesin-only formulation, and they have a stranglehold on the patent for that. Most generics on the market must be taken every 4-6 hours – too much bother for me. There are many versions of Mucinex that contain other ingredients – decongestants, cough suppressants, etc – these are not OK for long-term use.

Sue

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@jcwest211

Hi Poodledoc
I have the same nebulizing routine. Do you know if there are any long term side effects of inhaling the hypertonic saline?

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jc @jcwest211 I have done tons of research on this and have never come across any bad long term side effects. Short term side effects could include direct irritation to your airways, causing more coughing or just that feeling of irritation in which case you should lower the % saline from say 7% to 3% at least temporarily.

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@sueinmn

Yes, the colored sputum is evidence of infection. The fact that you are coughing it up is a good thing – getting the bacteria and it's safe hiding place out of your lungs. Coughing is not going to damage your lungs, but it can give you sore ribs.
What are you doing for airway clearance to 1) thin the mucus (e.g. saline or Mucinex) and 2) move the mucus (e.g. Aerobika, postural drainage, etc)?
Sue

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Hello Sue, I have a question regarding colored sputum. Since my productive cough started over 8 years ago the color of my sputum has always remained the same, after negative or positive sputum cultures, or even after long term multiple antibiotics, always the same light tan color. I always ask any new doctors (multiple) their opinion, most will respond with no big deal or it is just from the inflammatory process itself, not necessarily evidence of an active infection. Have you been told that any color other than clear is a sign of infection? Thanks Bill

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@poodledoc

Hello Sue, I have a question regarding colored sputum. Since my productive cough started over 8 years ago the color of my sputum has always remained the same, after negative or positive sputum cultures, or even after long term multiple antibiotics, always the same light tan color. I always ask any new doctors (multiple) their opinion, most will respond with no big deal or it is just from the inflammatory process itself, not necessarily evidence of an active infection. Have you been told that any color other than clear is a sign of infection? Thanks Bill

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@poodledoc My specialist says the coloured sputum (mine is yellow or green) it is caused by the bronchiectasis inflamation. I would like to hear any other ideas also.
Thanks
Heather

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