(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

@sueinmn Hi Sue my dad and my dads relitives both had lung issues , which they passed away from, I and we all have 1 CF gene along with my children. I think that CF gene has alot to answer for with our lungs. We also have Gerd sinus and allergies/non allergic probs like change of temperature. I definitly think you are on the right track. not fun

@bevmac

– – I have a hole in my lung big enough to put your thumb inside with thick edges. So will continue with antibiotics – does positive thinking help with side effect of medication. 🤣🤣🤣 Any thoughts on those of you who have walked the path.

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@bevmac Yes, positive thinking and determination do definitely help.
The Big 3 drugs can be brutal for some. But for many the side effects are not too bad. (I expected a bit of a battle to fight this thing! LOL).
The decision to give the drugs a go is yours. But with lung cavities, it's getting a bit more more important to at least try them for a few months if you can. You might have some (smaller) side effects that everyone gets from the disease as well as from the drugs. And I've found that many things that were a problem in the first month or two start to settle down a bit more after a while and you can live with them. Having periodic eyesight checks, liver function tests and hearing tests helps to monitor things.
My lung doctor specialises in NTMs. She gets me to take the drugs in stages in the evening, so I watch TV or sleep through most of the side effects. For example: 6pm Rifampicin, 8pm Ethambutol with my evening meal, and 10pm Azithromycin just before bed. She also recommends taking a good probiotic every morning with a prebiotic (Inulin) as well. So far that's really helped with gut issues and prevented diarrhea. I also take Vitamin D and frequently inhale pure Tea Tree Oil (Melaleuca essential oil) — the research supports using these things to fight mycobacteria.
I'm in Australia too — Brisbane. But no matter what country we live in, you've come to the right place. This forum site is the best because the people are so nice and helpful and responsive.
Lots of luck and courage to you

@brigby

@unicorn thanks for your honesty. I may have to decide soon whether to start the 3 pill regimen or not, and my gut is sensitive anyway. I’m 57. Waiting for culture results…. and praying.

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I have a terribly sensitive gut. Have trouble with most things other than Tylenol. Still stupified that I do so well on the meds. I started them a week apart both times which helps immensely. And again, if your doctor is willing to let you suffer with them and not keep tweeking, you have the wrong doctor. My doctor in Texas is invested in seeing that I have the best life possible at all times. When he tried a new med on me and it put me to bed, I called him and he said "Throw that damn stuff away. You can't be like this."

@tdrell

@conniewright…..if you want to hear and see the surgery you would have as well as see and hear Dr Mitchell….got to you tube to John MItchell MD "when Antiotics are not enough" I have heard and seen him speak at NJH NTM workshop…impressive….and also in the audience were a number of people he had done the surgery on….looking and feeling well….coincidently sat at lunch with some of them…they were living active lives and looked great. tdrell

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Tdrell….There is no way to thank you enough for directing me to that video. It has confirmed my position that I need to just get this done. Dr. Mitchell is obviously "brains on wheels" and has this surgery down to a fine science. I have no hesitation putting myself in his hands. The video confirmed it. So much info on there otherwise also. Again, thanks a million!!

Liked by tdrell

@bevmac

Hi Phillistamara, I too am beginning tomorrow to take clarithromycin 250 mg, ethambutol and Rifampicin tomorrow – and taking these drugs Monday, Wednesday and Friday. It is great to have this page to share stories and pass on info.

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it's nice to have someone closer to my ago to relate to as we are both starting on this journey at a later age than most. I am 80 and you name it I have have it! I am worried about my vision most of all….I guess time will tell

@sueinmn

Hi unicorn. My daughters, both nurses, one in an ER, and my doc have assured me there is no risk of transmission to my little grandkids. The only restriction my doc gave me was to stay away from my transplant patient cousin until I have 2 clean sputum cultures. That's because he is immunosuppressed. In fact, I am far more likely to catch a virus or infection from one of them.

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@sueinmn thank you

@conniewright

Tdrell….There is no way to thank you enough for directing me to that video. It has confirmed my position that I need to just get this done. Dr. Mitchell is obviously "brains on wheels" and has this surgery down to a fine science. I have no hesitation putting myself in his hands. The video confirmed it. So much info on there otherwise also. Again, thanks a million!!

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@conniewright …thanks for positive feedback on Dr Mitchell. The video is a few years old…so he has done even more of the surgeries since this was made. I have heard him 3 times at annual NTM workshop at NJH in Denver and continue to be impressed with him…as well as all of the NTM care team there. Just back from annual visit to NJH …each time my admiration for the place grows. Tdrell

@sueinmn

Hi unicorn. My daughters, both nurses, one in an ER, and my doc have assured me there is no risk of transmission to my little grandkids. The only restriction my doc gave me was to stay away from my transplant patient cousin until I have 2 clean sputum cultures. That's because he is immunosuppressed. In fact, I am far more likely to catch a virus or infection from one of them.

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I was living with a parrot for 13 years and when my immune system went down, i got this disease. The dr. told my husband to get that bird out of our home and bring hazmat in. He said no human should bring a bird into their home. I am finding that being around sick people is not good for me. When i get a cold, it turns into much more and i get so sick. Because i dont look sick, people do not take me seriously. I am fighting upper respiratory infection now and it is awful. I am so tired and weak. We have to eat things that help our immune system.

Hi dear! I have a bird for the pass years! He’s a Conure and he’s wonderful. Now after I read your post I’m concerned about my heath. I would break my daughter s heart if I have to give him up. Thank for the information.

@ @cindyrue, What are some of the food you eat to help your immune system. Reason I ask, my wife is immune system is suppressed, tired and weak all the time.

That was one of the first things I was asked at diagnosis. Have you been around birds? Apparently, MAC is associated environmentally with birds. I had a homing pigeon as a child, and my aunt, who I spent many summers with in New York State, had two really cool parakeets. Something to think about I guess.

@cindyrue

I was living with a parrot for 13 years and when my immune system went down, i got this disease. The dr. told my husband to get that bird out of our home and bring hazmat in. He said no human should bring a bird into their home. I am finding that being around sick people is not good for me. When i get a cold, it turns into much more and i get so sick. Because i dont look sick, people do not take me seriously. I am fighting upper respiratory infection now and it is awful. I am so tired and weak. We have to eat things that help our immune system.

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@cindyrue, @america
..Your posts are interesting. I have never heard of a connection of MAC with birds.??? Wondering if other folks on this site have heard that from any Doctors at Mayo Clinic or NJH? Also wanted to mention to Cindyrue that my Dr at Mayo told me that I should have on hand a script and 3 refills for a good antibiotic (other than the ones used in the treatment of the big 3) for any flares. I too have a somewhat weakened immune system so when I get sick it often goes into pneumonia or bronchitis. He did not want me to waste the time going to a Dr…but to start an antibiotic immediately so that it didn't get bad. This also makes me feel mentally so much more secure.
Kate

@alleycatkate

@cindyrue, @america
..Your posts are interesting. I have never heard of a connection of MAC with birds.??? Wondering if other folks on this site have heard that from any Doctors at Mayo Clinic or NJH? Also wanted to mention to Cindyrue that my Dr at Mayo told me that I should have on hand a script and 3 refills for a good antibiotic (other than the ones used in the treatment of the big 3) for any flares. I too have a somewhat weakened immune system so when I get sick it often goes into pneumonia or bronchitis. He did not want me to waste the time going to a Dr…but to start an antibiotic immediately so that it didn't get bad. This also makes me feel mentally so much more secure.
Kate

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@cindyrue MAC (I think) Has latin word for birds in it Mycobacterial AVIUM intracellulare. I was asked about being around birds also grandparents had chickens. So maybe that was source. I got double pneumonia when 5 so bronchiectasis probably set in and maybe the chickens contributed. Could have been so many thngs.

AVIA

Hi all
There are some serious diseases carried by birds Histoplasmosis is one.
Another Bird Fanciers Lung BFL.
I stay clear of birds but I do like to watch them at my bird feeder outside my window though.

Here is a list I found online:

Cryptococcosis (Cryptococcus neoformans) …

Histoplasmosis (Histoplasma capsulatum) …
Mycobacterium avium complex (MAC, Avian Tuberculosis) …

Parrot Fever (Psittacosis; Chlamydiophila psittaci)

So it looks as if MAC Avian TB is Also carried from birds.

Take care
Shari

I have had this for four years, now coughing up blood? Is this common in alpha one and mai cases?

Liked by brigby

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