(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 | Mar 9, 2017

In reply to @ilgrp4e "So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds..." + (show)

@128128terry11t .. Terry , I am really glad you jumped in with this advice .. too often we sit back .. BUT this kind of help may help MANY others .. thank you so much! I also had not heard of a pulmonologist using TWO weeks between the meds .. GREAT idea! If you don't mind I am going to add this to my File Cabinet .. just full of good advice .. again .. thank you! Hugs! Katherine

Katherine, Alumni Mentor | @katemn | Mar 9, 2017

In reply to @ilgrp4e "So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds..." + (show)

by @heathert, Hey Heather what kind of magic wand do YOU have! I just WISH I was clear of that nasty Pseudomonas Aeruginosa bacteria! Dr. Aksamit says Pseudomonas Aeruginosa is like MAC .. you can "treat it but cannot cure it" .. but HOPEFULLY after 28 days of 2x a day of Cipro .. I will be stabilized like I have been with MAC since May 2014! Even today after just 3 pills of Cipro I feel somewhat better .. not ready to run any races .. but not in bed either! YEAH! I know it is from all the positive energy I have been feeling from all my wonderful Forum members .. feels all warm and fuzzy! Thank you ALL! Katherine

Katherine, Alumni Mentor | @katemn | Mar 9, 2017

@128128terry11t .. Terry GOOD LUCK .. hope all goes well .. with your positive attitude I think it will! Sending you a hug! Katherine

Katherine, Alumni Mentor | @katemn | Mar 9, 2017

In reply to @katemn "Sputum Test Results Posted by @windwalker in MAC & Bronchiectasis, 18 hours ago Hi ALL! Good..." + (show)

@beatitnow .. Amy, hope you don't mind if I jump in re "how many clear sputum samples does your doctor want in order to go off the drugs?" According to Dr. Aksamit you must have twelve months of consecutive negative sputum cultures to stop antibiotic treatment. Hope this helps your understanding. Hugs! Katherine

Katherine, Alumni Mentor | @katemn | Mar 9, 2017

In reply to @boomerexpert "I'd been undergoing acupuncture for a few months...wasn't sure if it was helping but I was..." + (show)

Good job Boomer .. thank you! Katherine

irene5 Irene Estes | @irene5 | Mar 9, 2017

In reply to @ilgrp4e "So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds..." + (show)

So relieved to hear you are feeling a bit better Katherine. Hopefully every day you will get better and stronger. Irene

heathert | @heathert | Mar 9, 2017

In reply to @ilgrp4e "So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds..." + (show)

@katenm I wish I did have a magic want and could fix everybody, how wonderful that would be. Hope the cipro stabilises you quick smart! I had a post come up saying clear of mac psudo and something else, it was probably from someone else, woops.

Colleen Young, Connect Director | @colleenyoung | Mar 9, 2017

In reply to @katemn "Dear All, Just read a really interesting article on Bronchiectasis .. not saying it was fun..." + (show)

Hi @gaylejean,
Actually, @windwalker did offer a response to your first question related to neuroendocrine tumors (NETs) and MAC. She said "No. MAC is an opportunistic mycobacterium that attacks people with weakened immune systems due to various disease situations."

However, Gayle, I'll use the words that @katemn often uses. Don't put the cart before the horse, especially since you don't have Pulmonary NETs. I couldn't find any literature in a Google search that suggests people with NETs are predisposed to getting MAC. Please don't add MAC to your worries unnecessarily.

If you are concerned, don't hesitate to talk to you cancer care team at Mayo. We have specialists at Mayo Clinic like Dr. Charles Thomas who specialize in lung infections as well as lung cancer, including the biology of neuroendocrine lung carcinoma, which includes pulmonary typical and atypical carcinoid tumors, large cell neuroendocrine, and small cell lung cancer.

Did your oncologist suggest that you monitor for MAC symptoms?

Colleen Young, Connect Director | @colleenyoung | Mar 9, 2017

In reply to @katemn "Dear All, Just read a really interesting article on Bronchiectasis .. not saying it was fun..." + (show)

@gaylejean, we look forward to seeing you back in the "Carcinoid cancer" disucssion in the NETs group http://mayocl.in/2cK4PdN

Terri Martin, Volunteer Mentor | @windwalker | Mar 9, 2017

In reply to @ilgrp4e "So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds..." + (show)

<br><br><br><br><br>Hello. I am sorry to hear that your mom is going through all of this. <br>Sounds like a miserable time of it. There is an alternate drug antibiotic <br>called tobramycin. It is inhaled with a nebulizer. Please tell your mom we <br>all wish her well.<br> <br><br>

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