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.

Elaine | @laneyk | Sep 4, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

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If your chest X-rays are negative, they will have to rely on sputum cultures. I guess if you can produce a collection, they will have to get from bronchoscope. <br><br>

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boomerexpert | @boomerexpert | Sep 4, 2016

<br><br>Best non-invasive test is CAT scan or MRI - will show light areas in the<br>lungs that can indicate bronchiectasis and MAC..<br><br>

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jilligirl | @jilligirl | Sep 4, 2016

I have had a CAT scan, an MRI, a PET scan and a lung biopsy. I got the results Friday which is mycobacterium avium intracellulare. My doctor started me on 5 antibiotics for 18 months, which I take Monday, Wednesday, and Friday. Seems like it will be a long haul.

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heathert | @heathert | Sep 4, 2016

Hi jilligirl, what antibiotics are you on?

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jilligirl | @jilligirl | Sep 4, 2016

right now I am taking Rifampin, Ethambutol, and Azithromycin. I pick up 2 more on Wednesday but I don't know what they are yet.

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cathyt | @cathyt | Sep 4, 2016
In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)
@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts... Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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I too have been diagnosed with Mac. I've been on meds for six months. I had a CT scan few weeks ago. Dr really didn't give me a straight answer if the same or worse. He was more concerned with my PFT test stating my chest was a lot tighter which I haven't noticed. How soon can you tell if meds are working? Do you see an infectious dr in addition to a pulmonary dr?
I'm wanting to find someone who specializes in Mac. I live in Lake Mary Fl

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heathert | @heathert | Sep 4, 2016

wow jilligirl, thats a few, please let me know what they are when you get them. I was on big 3 only 3 days a week for 18 mths but I feel that I should have been on more as it diddnt do a great deal so now doing daily and adding amakacin. I always fing the docs dont give much information away easily, you really have to be direct and get the answer you want. I also have intracellulare.

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heathert | @heathert | Sep 5, 2016

I thought this was very interesting, alot of MAC types grow in biofilms, so make them resistant to antibiotics as they cannot penetrate them, this article has found a way to breakdown those biofilms so that antibiotics can work again .wonder if anything has happened with this lately as it was a while ago http://aac.asm.org/content/54/5/2112.full

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 5, 2016
In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)
@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts... Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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Cathy, there are quite a few Floridians on this forum who can make a recommendation. I'm tagging @dixer @boomerexpert @coylemel333. You can also call Mayo Clinic Jacksonville for recommendations http://mayocl.in/1mtmR63

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boomerexpert | @boomerexpert | Sep 5, 2016
In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)
@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts... Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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If asking me, yes.

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