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.

boomerexpert | @boomerexpert | Apr 10, 2017

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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10 replies
Katherine, Alumni Mentor | @katemn | Apr 11, 2017

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1 reply
Katherine, Alumni Mentor | @katemn | Apr 11, 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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Boomer, I read the same thing .. those of us with Bronchiectasis absolutely should be subscribing to: Receive our FREE Weekly Newsletter. I totally agree and sent the below email to Dr. Aksamit at Mayo Clinic .. if/when he answers I will share his answer .. because PART of the article says: The next step is to do longer-term studies to investigate whether an earlier intervention, with slightly less aggressive therapies, could help prevent disease progression in patients.” That MATTERS to me since I have now been diagnosed with three bacteria including Pseudomonas aeruginosa bacterium. Hugs! Katherine

Dr. Aksamit, Obviously I am very concerned about this new issue of Pseudomonas aeruginosa bacterium .. just battling with MAC .. now fighting Bronchiectasis! I read the below article re: Removing Antibodies from Bloodstream May Reduce Chronic Lung Infections in Bronchiectasis .. and wondered if Mayo Clinic is working on this? If it is a current option for me? Thanks for your help! Katherine Fink #

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-72040541
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boomerexpert | @boomerexpert | Apr 12, 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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It is...but issue is US doing such research, not UK speeding it up...we must get this info in front of our docs and ask them to push for such research here.

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becky33 | @becky33 | Apr 12, 2017
In reply to @katemn "Good MAC Doctor? Posted by @chinasmom in MAC & Bronchiectasis, 2 hours ago I have been..." + (show)
@katemn

Good MAC Doctor?
Posted by @chinasmom in MAC & Bronchiectasis, 2 hours ago
I have been searching for either an infectious disease doctor or a pulmonary doctor in the St .Louis Missouri area to treat MAC. It's exhausting work. I currently have pulmonary doctor with a prescription pad and an infectious disease student.
Please help if you know of a good one.
Becky

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@chinasmom Becky, I am going to move your Post to the Main MAC page .. hoping you might get more answers there. Yikes it must be SO frustrating to have that kind of experience with your doctor! "an infectious disease student" .. is that at a teaching hospital? .. and no luck just googling doctors in the area? Hope someone jumps in with some help! Hugs! Katherine

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Dr. Adam Anderson M>D. Assistant Prof of Medicine, Division of Pulmonary and Critical Care Medicine at Washington University in St. Louis School of Medicine is my MAI Dr. His phone is 314 454 8763 and address is 4523 Clayton Ave. St. Louis, Mo. 63110. To schedule an appointment use 314 454 38917. His nurse is Anna Ellis at 314 273 1457. I was just diagnosed in Jan and been on the 3 meds since Jan 20th 2017. Also, Dr. Anderson ordered me a Smart Vest which I believe has helped a lot. Go back to him on April 28th to start all the routine testing MAI patients get. Will post what all he orders after I see him. If he doesn't order vision/hearing etc I will be asking him for them. Know he's doing kidney and liver as he told me that.

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tdrell | @tdrell | Apr 12, 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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BEcky33....all your drs sound good....did they also do a CAT scan?? what did it show if they did one? Two more questions:
1.do you cough less in texas where I assume it is dry?
2.do you have Gerd and Sleep Apnea? Terrid

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fflowhplar | @fflowhplar | 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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MAC no cough. I am also at Mayo with Dr Aksamit, after being at NJ Denver. He is very kind and understanding. No frightning prognosis.

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chinasmom | @chinasmom | 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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@boomer , thanks for looking out for all of us. There is great information in " Bronchiectasis News Today". Spent alot of time there yesterday because I am always looking for something i can give my family so they can try to have some understanding of what we are going through. They have a search engine where you can put in topics and it will bring up articles about your topic. They highlight words and topics that will link you to more information and they have a print option so, my printer was humming yesterday. They also suggest articles at the bottom of the page and I found one yesterday about a doctor describing chronic illness. I highly recommend it. That artcle has a link to that doctors blog with very lighthearted and funny stories. Everyone should check it out. Thanks for the link and for all you do.
Becky

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chinasmom | @chinasmom | 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...

Jump to this post

@katemn , I found such great information at Bronchiectasis News Today. I printed a lot of articles about our disease to give to family and friends. I saw an article at the bottom about a doctors view of chronic illness , its a must read for everyone she has a link to her blog about all chronic diseases. Thanks for advocating for us and for doing all you do.
Becky

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