(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@lindam272 Thank you Linda. Those are excellent tips!

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@sophie1019 Sophie, I was put on 500 mg doxycycline 2x a day for 10 days on alternating months. Drug is changed to 500 mg 2x day of ciprofloxacin for 10 days on the off months. I did this treatment for three years. It kept me healthy during that time with the exception that I caught pseudomonas at the end of the third year. Then, the doxy was switched to inhaled tobramycin. The pseudomonas was cleared after one month on the toby. I will be seeing my Mayo dr in June and see if he wants me back on the old regimen. My lungs are severely damaged so I have to be on antibiotics for life.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@nick52 aFib is atrial fibrillation-it’s an irregular heart beat that can cause a stoke. As they explained it to me, there are times the heart doesn’t have a full beat, it just flutters. This can cause a clot to form in the heart which could then get pushed out when there is a full beat. I was first put on a blood thinner to protect against that, which is what I thought caused, or contributed to the coughing up blood. I have had an ablation procedure which fixed the aFib so no more blood thinner. But I have read bronchiectasis can cause coughing up blood.
I don’t take any type of probiotics. I thought that was only to help your stomach if you were on antibiotics. To be honest, I don’t really watch what I eat. I should be better about that, and I have tried but I go back to my old ways and eat what I want. I do notice dairy, gluten, tomatoes and sauce do cause more mucus and more throat clearing, but, I still eat those things. Just not as often. I have also had a video fluoroscopy to check my swallow. Everything was normal and I do not aspirate any food or liquid. I’m pretty sure the bronchiectasis came from many years of smoking and growing up in a family of smokers which damages the lungs.
The Aerobika is a breathing device. You blow into it and it flutters, and vibrates the bronchial tubes to help move the mucus out. Sometimes it works, sometimes not. But I still do it twice a day, total 50 breaths in 5 different positions.
Who knows what’s best to do? I don’t think the doctors are even sure. Whatever works for each person and hope for the best.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@suzie2017 I agree. I often say it’s like a science fiction disease. Who could believe you can’t drink water, or shower, or swim. It’s like being allergic to water!! I’m sure there are “conspiracy theorists” who would think it is some kind of government plot. Who knows!

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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Thank you for responding…

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@ginak Ha ha! I am such a weirdo. That conspiracy theory actually did cross my mind! I guess the mega rich don't want to take us to Mars with them!! LOL

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@ginak I'm reading your response to Nick's post and chuckling about what you said about food. I'm the say way. I know I should watch what I eat to reduce production of mucus. But I just can't do it. My pulmonary doctor did order a procedure done to see if I had GERD. The answer is no. So I continue eating what I like to eat and settle for tolerating the excess mucus in the process. I love food. So it is all worth it for me.

Liked by ginak

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@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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Hi @megan123
Here are the links to the conversation you had with Katherine and others about swimming and pools.

– Swimming in chlorinated swimming pools https://connect.mayoclinic.org/discussion/swimming-in-chlorinated-swimming-pools/

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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Here's the link to the discussion about prevention:
– How To Prevent Re-Infection of MAC/MAI https://connect.mayoclinic.org/discussion/how-to-prevent-re-infection-of-macmai/

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@colleenyoung Thank you Colleen! I copied it and saved it to my notepad.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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Thank you very much Teri. Our primary physician is going to refer us to an infectious disease doctor.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@ginak!  Thanks for your response.  My husband have aFib and git the same treatment as you had except he didn’t get ablation. Can you explain the procedure for ablation.  I think I know what it is but not sure. Maybe you may want to try something to control

the mucus. I know it is had to stay away from food you crave for lol ! Bronchiectasis can be cause by excess of mucus getting to your lungs according to my doctor for Infection of MAC .  That is why we need to have a diet with little mucus forming food. Bronchiectasis

is the reason why we catch organism like the MAC. We are more prone to catch organism from soil, water, dust etc.  Being a smoker doesn’t help for sure.  

Thanks for explaining   Aerobika .  I know what it is . We use that I think in hospital after a surgery to help the lung to work at its full capacity.  Live happily Gina! 

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@suzie2017 Very good. I hope the I.D. doctor can devise a good plan. Will you please keep us posted?

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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He has never really had back problems. However, in the past few months he has had some discomfort in the lower back and in the middle. He also has a small amount of fluid in the lungs which could cause the pain.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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@suzie2017 yes if he has fluid on his lung it could cause pain in his back.  The fluid on his lung can make him very tired also. Has he tried Clear lung the blue battle to clear his lung.does the Dr know what causes fluid on his lungs.  Clear lung is a mix

if herbs to help clear the congested lungs. What about his digestion and does he have a lot of mucus (clearing throat)? Have a lovely day! The sun is shining here. Life is crazy good!

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