(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.

xfirerose | @xfirerose | Dec 13, 2018

In reply to @xfirerose "@windwalker" + (show)

@windwalker thank you very much. I will look into this ASAP.

anniepie | @anniepie | Dec 16, 2018

In reply to @windwalker "@anniepie Supposedly taking a Niacin suppliment is supposed to ease or get rid of tinnitis. I..." + (show)

@windwalker Thanks so much for this -- I will try the Niacin for the tinnitus.
Happy Christmas to you Terri

prelle1 | @prelle1 | Dec 18, 2018

In reply to @anniepie "@summer33 I have seen only my GP/primary carer. Having difficulty getting in touch with the Specialist..." + (show)

Does anyone know of a doctor’s name or names that you might refer me ? I have been going to MD Anderson and they just refuse to follow up or give any treatment options. I was put in the Big 3 in 2009 and did well but they never even did a CT scan or any sputum cultures when i finished the drugs and they never even explained any side effects regarding eyes or hearing so I have been pretty much in my own . I am so fatigued that I am considering myself to be an invalid and did not know what to do. I found your blog and I am so thankful to all of you and now I realize how shabbily I have been treated at MDA . I was so ignorant I didn’t even know you should have a C.T. scan or sputum cultures . I will go anywhere to see someone who might treat me will a little dignity and caring. I am in Houston . Thank you!

egayle187 | @egayle187 | Dec 18, 2018

@prelle1...You have been treated shabbily and deserve dignity and caring. We are here for you. I live too far away to recommend drs, but believe you will hear soon from someone who can help. Fatigue saps us of the energy to fight for ourselves. Can you get into see someone who will order bloodwork right away? There may be delays getting to see the pulmonary specialists at the best places like Mayo Clinic.
Anemia, vit D, thyroid, infection.....many more causes that can be fixed quickly. These are often associated with lung problems. (I've had them all)
Don't feel bad about not knowing what to ask for...so many doctors have not kept up with the best practices for MAC.
Good luck. You will get some answers soon.

anniepie | @anniepie | Dec 18, 2018

In reply to @prelle1 "Does anyone know of a doctor’s name or names that you might refer me ? I..." + (show)

@prelle1 I agree completely with @egayle187 -- you and all of us deserve dignity and caring, and treatment from doctors with knowledge and expertise in NTMs including MAC. Diagnoses with NTMs have increased and are set to overtake diagnoses of Tuberculosis in the future, so it's about time there was more awareness and knowledge in the medical profession. And we need them to be kind and thorough as well.
I wish you luck with getting much better medical care soon.
This is a long-shot, and I don't know what he is like, but there's an international medical expert on NTMs and MAC at the University of Texas in Austin -- Dr Richard J Wallace. Have a look at this link: https://www.maclungdisease.org/richard-j-wallace-jr-m-d/ . He doesn't take patients at the moment, but I'm pretty sure that contacting his clinic at the University of Texas Health Science Center would help you get referred to a doctor with the right expertise. (Address: 11937 US HWY 271, Tyler, TX 75708, USA, (903) 877-8953 ). There's also a web page on how to become a patient at UT Health: https://www.maclungdisease.org/how-to-become-a-patient-at-uthsct/ . It sounds like you don't have all the test history they normally need but explain that to them, explain what has been happening to you, and take all the information on your medical history and treatment that you can get hold of.
Please let us know how you are going. Good luck! Annie

Helen | @helem | Dec 18, 2018

In reply to @anniepie "@windwalker Thanks so much for this -- I will try the Niacin for the tinnitus. Happy..." + (show)

I read somewhere that the time release Niacin can cause liver problems... might want to check that out

spencersok | @spencersok | Dec 18, 2018

In reply to @prelle1 "Does anyone know of a doctor’s name or names that you might refer me ? I..." + (show)

@prelle1 I am going to suggest you google pulmonologist in your area. The majority of their staff will talk to you without you first making an appointment. If you can’t find someone, PM me and I will help you...

boomerexpert | @boomerexpert | Dec 18, 2018

@prelle1 I Googled "top rated medical center Houston and here's the results: https://www.google.com/search?client=firefox-b-1&q=top+rated+medical+center+Houston recommend you start with these...and so sorry you had such a terrible doc...it is incumbent upon us to do our own research and advocacy...glad you are doing so now.

anniepie | @anniepie | Dec 18, 2018

In reply to @helem "I read somewhere that the time release Niacin can cause liver problems... might want to check..." + (show)

@helem Thanks Helen I will check this

Terri Martin, Volunteer Mentor | @windwalker | Dec 19, 2018

In reply to @prelle1 "Does anyone know of a doctor’s name or names that you might refer me ? I..." + (show)

@prelle You can go the the website http://www.ntminfo.org for a list of doctors in your area that are certified in the care of MAC and Bronchiectasis.