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.

Flib | @flib | Sep 7, 2018
In reply to @alleycatkate "@flib Hi Flib...I am pretty new to this but go by this from a bronchiectasis.site...pretty simple...." + (show)
@alleycatkate

@flib Hi Flib...I am pretty new to this but go by this from a bronchiectasis.site...pretty simple. They even have a video but here is the site and the nebulizing info: : http://bronchiectasis.com.au/physiotherapy/techniques/inhalation-therapy-via-a-nebuliser

Sit in a well-supported chair with a neutral lumbar spine – this enhances the function of the diaphragm and the pelvic floor and minimises musculoskeletal stress (Fig. 1)

Use a mouthpiece *, if possible, and place it well into the mouth on top of the tongue

Instruct the patient to breathe in slowly, with varied inspiratory volumes

Hold the breath briefly before exhaling

Continue until the nebuliser bowl is empty

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Thank you. The thing that confuses me is blowing back into the mouthpiece and into the nebulizer. I've also read to never return the mist to the nebulizer.

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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 7, 2018
In reply to @megan123 "@windwalker....I totally agree with boomer expert...our partners need to be apart if this journey, so bringing..." + (show)
@megan123

@windwalker....I totally agree with boomer expert...our partners need to be apart if this journey, so bringing him to all appts from here on....men r wired differently to women, and when they here it first hand from a specialist, they’ll understand it better...

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@megan123 Hi Jennifer. He has gone to every appt with me. He knows. He just wasn't thinking at the time. I reminded him again. I may talk to the mom of the kids and explain it to her. That way, she will think before asking us the next time. They are are building a house and she has constant errands..... I don't mind watching her kids, but we are coming into cold and flu season.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 7, 2018
In reply to @heathert "@windwalker I have read that you should eat it raw but squashed producing Allicin. Lets just..." + (show)
@heathert

@windwalker I have read that you should eat it raw but squashed producing Allicin. Lets just say that I often smell of garlic now.

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@heathert Gosh girl! I don't know if I could stand myself if I ate raw garlic. No kisses for you! LOL

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1 reply
Suzie2017 | @suzie2017 | Sep 7, 2018
In reply to @windwalker "@suzie2017 Suzie, I am sorry to hear that your husband is having such a rough time...." + (show)
@windwalker

@suzie2017 Suzie, I am sorry to hear that your husband is having such a rough time. I know it is hard on you too. The pseudomonas can be treated not using any of the BIG 3. In fact, I don't think the Big 3 kills pseudomonas. One single antibiotic can treat that. I did nebulized tobramycin to get rid of it. I felt better in 30 days. I still nebulize the tobramycin every other month to keep it away. Someone else on this site took another single antibiotic and got rid of it as well. I will poke around and see who posted that and what they took. My Mayo clinic dr put me on a single, but alternating antibiotics for life. I have had only one infection since 2013, and that was pseudomonas. I got over that in one month on the tobramycin. It sounds like your husband needs to be on continuous monthly antibiotics indefinitely. (Not one of the BIG 3) His lungs are sick and damaged and therefore will always be prone to infections. Perhaps you can discuss that with his doctor. Note: when I do alternating antibiotics in pill form; it is only for 10 days a month. Thank you for the update on your dear husband. I hope he is feeling better before long.

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Thank you for your response Terri. My husband has been off all antibiotics for nearly 1 month now. He has gained 3 pounds and he is eating very well. He is still lacking energy and sleeping about 14 hours out of a 24 hour day. The doctors are saying that is due to the infections (Mac and pseudomonous). However, the pseudomonous must be lurking in the background for now because he has not had a flair up since the end of July. The ID doctor wants to begin the Big 3 again but we want to hold off for at least 2 months so that my husband can get stronger. The ID doctor is indicating that he will give him 1/2 the dosage and only 5 days per week. Do you ever wonder if the ID doctors get some sort of kick back from the pharmaceutical companies for getting their patients to purchase the big 3 antibiotics?

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2 replies
oldkarl | @oldkarl | Sep 7, 2018
In reply to @megan123 "@windwalker....I totally agree with boomer expert...our partners need to be apart if this journey, so bringing..." + (show)
@megan123

@windwalker....I totally agree with boomer expert...our partners need to be apart if this journey, so bringing him to all appts from here on....men r wired differently to women, and when they here it first hand from a specialist, they’ll understand it better...

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I just noticed something while reading this line. It may be helpful for whomever started it. Apparently there are at least a couple kinds of bronchiectasis. One is Chronic. For quite some time, Mayo clinic and other clinics and schools have said that Chronic Bronchiectasis is almost a certain obligate positive sign of some forms of Amyloidosis. I know I have it, and I have some form of Gelsolin, apparently. I have talked with others who have been diagnosed with Chronic Bronchiectasis, and also with various forms of Amyloidosis. gelsolin, AL, HATTR, Multiple Myeloma, LECT2, even Alzheimer's. Also others which I have forgotten. Two things. Write down your conversations with others who share any part of your diagnosis. You never know when yours or their disorder will catch up to the other's, and you will wish you could remember who it was so you could go back and ask more. Also, Some things are never their own background disease, like Chronic Bronchiectasis.

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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 7, 2018
In reply to @flib "Thank you. The thing that confuses me is blowing back into the mouthpiece and into the..." + (show)
@flib

Thank you. The thing that confuses me is blowing back into the mouthpiece and into the nebulizer. I've also read to never return the mist to the nebulizer.

Jump to this post

@flib No, you don't exhale back into the mouthpiece. It's almost like smoking.

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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 7, 2018
In reply to @suzie2017 "Thank you for your response Terri. My husband has been off all antibiotics for nearly 1..." + (show)
@suzie2017

Thank you for your response Terri. My husband has been off all antibiotics for nearly 1 month now. He has gained 3 pounds and he is eating very well. He is still lacking energy and sleeping about 14 hours out of a 24 hour day. The doctors are saying that is due to the infections (Mac and pseudomonous). However, the pseudomonous must be lurking in the background for now because he has not had a flair up since the end of July. The ID doctor wants to begin the Big 3 again but we want to hold off for at least 2 months so that my husband can get stronger. The ID doctor is indicating that he will give him 1/2 the dosage and only 5 days per week. Do you ever wonder if the ID doctors get some sort of kick back from the pharmaceutical companies for getting their patients to purchase the big 3 antibiotics?

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@suzie2017, I am no doctor, but I feel like given his weakened state, they should only tackle the pseudo with one drug. I don't know all of the specifics of what is going on with him; but that is my gut feeling about it. I am glad to hear that he has put some weight back on.

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1 reply
Jo Ann K | @jkiemen | Sep 7, 2018
In reply to @suzie2017 "Thank you for your response Terri. My husband has been off all antibiotics for nearly 1..." + (show)
@suzie2017

Thank you for your response Terri. My husband has been off all antibiotics for nearly 1 month now. He has gained 3 pounds and he is eating very well. He is still lacking energy and sleeping about 14 hours out of a 24 hour day. The doctors are saying that is due to the infections (Mac and pseudomonous). However, the pseudomonous must be lurking in the background for now because he has not had a flair up since the end of July. The ID doctor wants to begin the Big 3 again but we want to hold off for at least 2 months so that my husband can get stronger. The ID doctor is indicating that he will give him 1/2 the dosage and only 5 days per week. Do you ever wonder if the ID doctors get some sort of kick back from the pharmaceutical companies for getting their patients to purchase the big 3 antibiotics?

Jump to this post

@suzi2017 The Big 3 are pretty much generic so I don't think they would get a kickback. It seems that most of them hold off until they are needed. I actually wish I would have started sooner to have avoided the amount of change that took place in my lung and would have prevented further damage. I don't like taking them but my CT started to improve after the 6 month recheck.

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Suzie2017 | @suzie2017 | Sep 7, 2018
In reply to @windwalker "@suzie2017, I am no doctor, but I feel like given his weakened state, they should only..." + (show)
@windwalker

@suzie2017, I am no doctor, but I feel like given his weakened state, they should only tackle the pseudo with one drug. I don't know all of the specifics of what is going on with him; but that is my gut feeling about it. I am glad to hear that he has put some weight back on.

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Right now he is not taking any antibiotics whatsoever. His doctor said he will not treat the pseudo until it flairs up again. He was (about 3 -4 weeks ago) receiving Zosin by IV for pseudo. Right now he is doing well except for fatigue. I know that another flair up is probably around the corner but I will enjoy him feeling pretty good for now.

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Flib | @flib | Sep 7, 2018
In reply to @windwalker "@flib No, you don't exhale back into the mouthpiece. It's almost like smoking." + (show)
@windwalker

@flib No, you don't exhale back into the mouthpiece. It's almost like smoking.

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@terri. Thank you. The smoking analogy is very helpful.

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