(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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@alleycatkate @windwalker @nick52 @jkiemen and everyone listening: I, too am asymptomatic, but even for those who are not, here are the steps I've taken to reduce or eliminate my chances for constant reinfection, and to promote better lung health:

1.I've installed a whole-house water filter of 0.2 microns (recommended by NJ) which filters out all bacteria/viruses, including MAC;
2.I get accupuncture treatments targeting my lungs (and my RA for those with autoimmune disorders)
3.I use Allertrex natural inhaled respiratory support (helps with flares)
4.I avoid hot tubs and public pools

I was dx'd in 2016 but docs think I've had MAC for a while prior to. CAT scans show that although new areas emerge, old areas have healed, so it just moves around rather than spreading. Of course I cannot statistically attribute my continued lack of symptoms and infection jumping vs. growing to these preventive methods I've adopted, but know they make sense, and truly believe they've helped.

Hope they help you, too.

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@suzie2017

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

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@boomerexpert I just love it when I read where patients are proactively trying their best to be well again!

Liked by tdrell, alleycatkate

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@suzie2017

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

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@alleycatkate You go girl!!

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@suzie2017

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

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@alleycatkate I am happy that you are not suffering from symptoms of mac infection. Those of us who do or have can tell you it can get very bad. I would def look for a new dr. Your dr may not seem to care perhaps because he doesn't know much about mac. That is not uncommon. You also need to find a good Infectious Disease dr. You need one to work with a good pulmonologist. If you need help finding one nearest to you, I can try to help. You can also go to http://www.ntminfo.org and ask them for help with that also. I can tell you from my own experience; that I went years with pulmonologists never giving me a sputum test. Mac and pseudomonas ate away much of my lung tissue. My lung function steadily dropped year after year. I was always told it is COPD and given asthma meds. I now have 37% of lung function left. Am I angry about the improper care? You betcha! Those drs had my medical records with the history of mac in them! And still never tested to see if it had come back. I didn't know any better at that time to ask for sputem tests. I do now! I started treatment at Mayo in 2013 and they have halted the downhill progressive path I was on. I didn't do the BIG 3 that is typically used. Mine is less toxic and fewer days of taking meds. Like you, I don't like taking meds. But, sometimes the benefit outweighs the negative. I am asymptomatic now and have put my weight back on that I had lost. (142lbs down to 116) Please find a knowledgible docter! Hugs -Terri

Liked by tdrell, alleycatkate

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@suzie2017

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

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@alleycatkate It is important to have in your possession; your lab results for mac. Keep it in it's own file. You will see why that is important as the years roll by. Ask that doctor what colony size your's is and what strain of mac it is, and what did the suseptibility test show? If he cannot answer these questions, then he is not the doctor for you. That is why you need a copy of the lab results. Your own hard copy can show you if it was even a complete lab test. Some local labs do not automatically do a suseptibilty test or test for strain of mac. Your thoughts?

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Doc was excellent. I was on antibiotics for 1 1/2years, then on an iv drip from October of 2017 until march of this year. I have no symptoms and was taken off med even though I still have a very, very small amount. Hang in there. Things will get better, I promise…..

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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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@sophie1019 Hi Sophie. I just finished a round of prednisone yesterday. Ironically not for my lungs as usual, but for a pinched nerve in my back. It is indeed great stuff! I don't know if I have a cavity or what in my right lung. All I know is, my entire right middle lobe is completely shot. They told me there isn't even any blood supply going to that area.

Liked by tdrell

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@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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@1478 Hi there. I am hoping the discovery of that new 'crisper' gene will help us.

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My husband takes a large Musinex pill every evening to help loosen his mucous. The pill, we call a horse pill, is huge and sometimes he has trouble swallowing it. Does anyone else take something similar to Musinex that is easier to swallow but still works well to loosen secretions?

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@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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What is the new “crisper” gene?

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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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I was on rifampin, Zithromax and ethambutol for 3 weeks then sensitivities came back from lab and I was advised to stop rifampin and start rifabutin. After taking rifabutin on a Monday and that nightI woke up achy and with chills and low grade fever. Felt tired and lethargic the next day-vomited once. My MD thought it may have been a virus so advised to stop all antibiotics for two weeks and resume. After taking on Mon and Wednesday, again woke up with some achiness and low grade fever. Did not feel as bad as previously-but not good! I am now just taking Zithromax until I see my dr the 25th.
Any thoughts on ways folks have had success taking rifabutin?

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@suzie2017

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

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@windwalker Thank you …I will get my results immediately from the pulmonologist. I already know he is not for me because of his unwillingness to talk to me. I have very limiting insurance and will have to check if I can go outside my hmo for a new Dr. I need to check this but would truly welcome your help in finding another pulmonologist and infectious disease Dr. I may just need to change my insurance come December so I can have more flexibility. Can you recommend any good Dr.s in W. Palm or Ft Lauderdale, Stuart or Melbourne? I live in Vero Beach so even Orlando would work well. I would call and see what insurance they accept and switch policy's come open season. I got no information from my Dr. other than I am asymptomatic with MAC. I am happy to hear you are now asymptomatic also!! It sounds like you have been through the ringer with this disease….but you must be doing something Right and your upbeat attitude probably gets you there!! Thanks again. Katie

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@suzie2017

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

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@boomerexpert …Thank you for your advice. It sounds as though you are being very careful. Does the MAC often just move or does it typically grow? When it starts growing is that when the Dr's want to start the cocktails? Do folks stay asymptomatic for long periods of time? Sorry…I know so little. The accupuncture sounds like a good idea as does the whole house water filter. I wonder about living with several cats in my bedroom and the dander…Perhaps an electronic air filter would be beneficial or would you think that might be overkill? I am not sure if the dander would exacerbate the condition. Finding this chat group is a God Send!! Thanks…Katie

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@suzie2017

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

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Terri….I would be so upset with the treatment…or the lack of treatment that you received from your past Dr's. How awful!! I agree…a good Dr is worth their weight in gold…..and I am right there with you on your mindset about meds. I freak thinking about doing the big three…I hope not to go there!!

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@suzie2017

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

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I am across the state from you in Sebring, FL. We go to an excellent Infectious Disease Doctor by the name of Dr. Lascon. Our Pulmonologist is also good but extremely busy. His name is Dr. Wong.

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