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.

Katherine, Alumni Mentor | @katemn | Apr 13, 2017
In reply to @becky33 "I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis,..." + (show)
@becky33

I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis, Mo. Have only seen him 1 time last Oct but his nurse has kept in good contact with me since my first visit. He ordered all the usual pulmonary tests that I had before ordered by my pulmonologist and then Dr. Anderson ordered the sputum test and when it came back positive, he then had me do 2 more 20 days apart to make sure they came back positive and they did. He started me on the Big 3 antibiotics Jan 20th and I go back to him April 28th and have appointment for more testing the morning before I see him. His nurses name is Anne Ellis and if I call her, she either answers or gets back to me within an hr. I ask my questions and she gets back to me within 3 hrs . So far I'm happy with him as I feel better than I have in yrs. I can actually breathe. I have the aches and pains of body ache and terrible hot flashes all night and I'm very fatigued but I can breathe. He also ordered a Smart Vest and I believe that has helped a lot. I do it 2 times a day. I do intend to ask Dr. Anderson how many MAI patients he's treating. According to his nurse Anne, he will start monthly sputum tests, and blood work to check my kidneys and liver when I see him again. Will also be asking him about hearing and vision testing at that time. I am a winter Texan and have been gone from the St. Louis area since Dec so that is why he hasn't started the other testing according to his nurse. My pulmonologist referred me to an infectious dr who put me on infusions every 8 hrs for 2 wks and when that didn't stop the coughing his office got me into Dr. Anderson at Washington University. Took from July to Oct to get into see him and that was with the infectious dr's office making the appointment. If you want his #, I can give it to you.

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@chinasmom, Becky, thanks for jumping in to support Becky33, I agree .. what a journey she has had! You gave her some great advice .. thank you!

In terms of your situation .. you said " I just finished a round of ciprofloxacin for a pseudomonas aureus and don't think it helped much."
Becky, I will be honest with you. When I as diagnosed with MAC .. on 4-5 antibiotics for thirty months .. I was SO focused on getting better .. healthy again .. I hardly even noticed that my medical records ALSO said that I had Bronchiectasis. It was ONLY months later when I had settled back into my life that I started googling Bronchiectasis that I realized that DARN .. I have a SECOND serious disease. The reason I am pointing this out is NOT to scare you .. BUT as you know .. I am big on "Knowledge is Power" .. so I now want you to educate yourself to your Bronchiectasis. Google it. Just ONE that will come up is:
http://www.resmedjournal.com/article/S0954-6111(16)30131-7/fulltext

I am pointing this out because I also just ended a 28 day 2x a day regime of Cipro for Pseudomonas that I don't think "took". So just today I took a sputum culture for a smear and culture .. a follow up. That is what I'd advise you also to do. Bronchiectasis is NOT anything to fool with. Hope this is helpful .. not scary. Hugs! Katherine

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Katherine, Alumni Mentor | @katemn | Apr 13, 2017
In reply to @beatitnow "Thank you to everyone for the advice earlier on my "fluttering" in my lower abdomen. It..." + (show)
@beatitnow

Thank you to everyone for the advice earlier on my "fluttering" in my lower abdomen. It has pretty much stopped for the last part of the day, so hopefully it will stay that way. 🙂

We are a military family and we currently live in Montana, but we are moving to Illinois in June. We hope to be there for the rest of our lives because my husband will retire most likely in 2 years. (And, my pulmonary doctor is in St. Louis which is 25 minutes away.) Yay!!

We are leaving tomorrow to fly to St. Louis to go house hunting. WE ARE MOST LIKELY GOING TO BUILD A HOUSE, SO......

1) DOES ANYONE HAVE ANY RECOMMENDATIONS ON ITEMS THEY WOULD BUY TO INSTALL IN A NEW HOUSE THAT WOULD HELP PREVENT MAC/MAI AS MUCH AS POSSIBLE?....Like a special water treatment system, bath shower heads, etc. What have you all done to increase prevention at your houses?

2) WHEN YOU ALL FLY, DO YOU WEAR A SURGICAL MASK TO PREVENT YOURSELF FROM CATCHING GERMS? I really don't "want" to, but I am curious what most of you do.

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@ijustdontbreathewell, I also installed what I was told was the highest level air cleaning equipment on our furnace/CA because of all my coughing .. I also added room air cleaners .. I feel that has really helped my coughing. Coughing is IMPORTANT to get the sputum up so that it does not become a breeding ground for the mycobacterium .. BUT NOT 24/7 as it felt like it was becoming! I still practice my "lung hygiene" twice a day making sure I get up as much sputum as I can but not the continuous coughing I was doing! Good for you!

It terms of "If you fly wearing a mask you will need a doctor's note, that you are not contagious but are preventing breathing in germs from others potentially or they can refuse to let you board." That was interesting .. I have never had that issue .. BUT I usually don't put on my mask until I am in my seat .. just for convenience sake. Think I will get one just in case .. good idea! Thanks for your ideas! Katherine

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Katherine, Alumni Mentor | @katemn | Apr 13, 2017
In reply to @boomerexpert "Hey all...check this out...https://bronchiectasisnewstoday.com/2017/04/04/reducing-bonchiectasis-lung-infections-by-removing-antibodies-from-bloodstream/?utm_source=BRO+E-mail+List&utm_campaign=eee151230d-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-eee151230d-72041969 - far more research taking place in Europe than here...will also post..." + (show)
@boomerexpert

Hey all...check this out...https://bronchiectasisnewstoday.com/2017/04/04/reducing-bonchiectasis-lung-infections-by-removing-antibodies-from-bloodstream/?utm_source=BRO+E-mail+List&utm_campaign=eee151230d-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-eee151230d-72041969 - far more research taking place in Europe than here...will also post in "we must advocate for ourselves" thread. This is the type of thing we must bring to the attention of our providers and ask why such state of the art research is not being conducted here...

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@chinasmom, Thank you Becky for you kind words! I agree with you .. I have REALLY learned a lot in that newsletter about our shared disease! Truthfully because in the beginning I was SO focused on getting healthier with my MAC I didn't even realize how serious the Bronchiectasis was .. hmmm! So I am really glad for that resource! Hugs to you! Katherine

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Katherine, Alumni Mentor | @katemn | Apr 13, 2017
In reply to @boomerexpert "Hey all...check this out...https://bronchiectasisnewstoday.com/2017/04/04/reducing-bonchiectasis-lung-infections-by-removing-antibodies-from-bloodstream/?utm_source=BRO+E-mail+List&utm_campaign=eee151230d-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-eee151230d-72041969 - far more research taking place in Europe than here...will also post..." + (show)
@boomerexpert

Hey all...check this out...https://bronchiectasisnewstoday.com/2017/04/04/reducing-bonchiectasis-lung-infections-by-removing-antibodies-from-bloodstream/?utm_source=BRO+E-mail+List&utm_campaign=eee151230d-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-eee151230d-72041969 - far more research taking place in Europe than here...will also post in "we must advocate for ourselves" thread. This is the type of thing we must bring to the attention of our providers and ask why such state of the art research is not being conducted here...

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@ijustdontbreathewell, , 'do you have the link please, I would like to read through it" you did not use an @ so not sure what link you are referring to? Let us know and we will help you. Katherine

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Katherine, Alumni Mentor | @katemn | Apr 13, 2017
In reply to @debymacc "I would love to add to this discussion or chat with either of you. I was..." + (show)
@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

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Hello @fflowhplar, Welcome! What is your first name .. more personal. What is your diagnosis? You are SO lucky to get into Dr. Aksamit .. he is so darn busy and popular! You are so right .. he is the kindest .. nicest man .. I have been going to him since 2007 and have found him to be so compassionate. Are you starting on the antibiotics yet? Keep us posted .. we have all walked this walk! Hugs to you! Katherine

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Katherine, Alumni Mentor | @katemn | Apr 13, 2017
In reply to @jh "I was dx'd with MAC in 1998. During the diagnosis process I was subsequently infected with..." + (show)
@jh

I was dx'd with MAC in 1998. During the diagnosis process I was subsequently infected with another more serious infection during a bronch.
I was on 3 to 6 antibiotics for 8 years. After 2 years I no longer tested positive (sputum) for the MAC.

After surgery to remove the lobe with the other, more serious infection, I have neither.

Good nutrition, daily EXCERCISE via workouts on my tread mill to keep lungs clear, have been key. Basically, I never let it interfere with my life. Yes, sometimes I was tired particularly after my morning 'cocktail' of meds, but my husband was good at gently coaxing me on, and I would eventually get over the 'hump' and enjoy an active day.

Also key, get an adjustable bed. They are expensive, but necessary so that you don't sleep flat, I waited years, and found I should have followed my Dr.s instructions immediately. Also, eat light at night.

but really, the huffing, puffing excersize 4 days a week, keeps the lungs clear and seems to have been (and still is) my biggest help other than the meds.

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@donut .. Donna did you ever get an answer on this question? Still interested? We started a new discussion .. why don't you repost it there?! Hugs! Katherine

https://connect.mayoclinic.org/discussion/good-mac-doctor/
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Katherine, Alumni Mentor | @katemn | Apr 13, 2017
In reply to @melissa23 "Hello my comrades with MAC. I am Active Duty military and frustrated with my limited access..." + (show)
@melissa23

Hello my comrades with MAC. I am Active Duty military and frustrated with my limited access to answers about my infection.

I had a >21mm PPD in 2011 along with gross reading CT Scans and misread chest x-rays. For three months in 2011 I was treated for Latent Tuberculosis then released from treatment after I demanded a QuantiFERON TB test which came back negative for TB.

In 2014, my body finally deteriorated to the point that my neurologist addressed my persistent cough and ordered an AFB sputum culture – Positive for Mycobacterium avium. My doctors act as if they have never seen the manifestation of this infection. My CT Scans have revealed “reticulondular, interstitial, pleuroparenchymal opacities in both lung apices” and x-rays range in readings from “mild, bilateral nodular changes in the lung apices” and “biapical pleural thickening”, to “the lungs are normal in appearance without evidence of active disease”. It seems that “normal” was much easier to deal with than the potential of missing the infection back in 2011.

I am currently on 2 antibiotics (azitrthromycin 500mg 3xs a week and rifampin 600mg 3xs a week) and have been since FEB 2015, yet sputum cultures continue to come back Postive.

Has anybody out there had AFB cultures to determine if the MAC is in their Blood & Urine?

Had anybody out there had their M. avium subspecies identified?

To aggravate matters more, I am told that the MAC is not in my lungs. My doctors are thinking of discontinuing the “toxic” antibiotic treatment. Over the past three years I have developed SVT, Raynaud’s disease, migraines, levido reticularis, vulvudynia, unspecified diffuse connective tissue disease and now I have left-side-facial muscle pain/droop and similar pain/swelling/immobility in my right hand.

I have asked the Military to Please send me to see Dr. Timothy Aksamit at the Mayo Clinic.

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@melissa23, Melissa, I've thought of you so often .. wondering how you are .. if you have time could you check in and just let us know how you are doing? Sending you a hug! Katherine

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Katherine, Alumni Mentor | @katemn | Apr 13, 2017

Dear All, I was looking for something else but found this .. thought t was interesting so thought I'd share! Knowledge is Power! Hugs! Katherine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4823187/
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tdrell | @tdrell | Apr 14, 2017

Katherine....I skimmed thru this....need to read it a zillion more times.....it tells me alitbif smart people from here and other countries are viewing NTMs and analyzing how to treat the various ones thanks for posting you amazing detective terrid

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