(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 | Jul 3, 2017

@freedom25 .. Patty, you said " I have been trying to read a lot not only here, there is conflicting info it seems." .. our Forum is PRIMARILY for support for each other and information/data gathered from ACTUAL experiences of each individual Member of our Forum.

It is my opinion that if you want to do further research .. that is is VERY important NOT to randomly read from the internet .. BUT to ONLY read from knowledgeable and trusted sources such as Mayo Clinic.com, John Hopkins, Cleveland Clinic, National Jewish etc. There is SOOO much junk out there that I know it terrified me when I was diagnosed with MAC in 2007 .. SO be VERY careful where/what you read! Hugs to you! Katherine

Patty, below from my File Cabinet .. I do not have a recommendation in NJ .. but I'll give you what I have:
DOCTORS-NYC From membe @ehliny: outstanding pulmonary doctor in NYC: Dr. Louis de Palo at Mt. Sinai Respiratory Clinic: (212) 241-5656. I also have a first-rate GERD doctor in Dr. Jonathan Aviv, 210 East 86th St: 212-722-5570. Dr. de Palo is not quick to prescribe antibiotics if you don't show full range of MAC symptoms. Dr Aviv (and I) believe there is a strong association between gastric reflux and lung disorders. I have a lot of confidence in both these physicians. Dr. Timothy Aksamit at MAYO Rochester had also recommended a NYC doctor for MAC, Dr. Doreen Adrizzo Harris, at NYU Pulmonary Medicine.

DOCTOR-FINDING A GOOD INFECTIOUS DISEASE DOCTOR https://www.ntminfo.org/patients/physician-referral-list move down the page to YOUR STATE

terryb1 | @128128terry11t | Jul 4, 2017

In reply to @katemn "@freedom25 .. Patty, you said " I have been trying to read a lot not only..." + (show)

Another good NYC doctor (worked with Dr. Huitt at NJ) is Dr. David Posner (pulmonologist) 178 E. 85th St. 212 737-0470 Terry

ginak | @ginak | Jul 4, 2017

In reply to @freedom25 "Thank you for your replies. I have been trying to read a lot not only here,..." + (show)

Hi Patty, I'm in New York City. I was diagnosed in Dec 2016 with MAI and bronchiectasis. I checked out the American Lung Association website and the NTM website for Drs. I just started going to Dr. Kamelhar at NYU. He was one of the recommended Drs. I suggest you check on line also and see if you find a Dr near you, or maybe someone else on here can suggest a Dr they have used.
Gina K

Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2017

In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)

@bschaper2 Happy
4th Barb! How are you doing these days? I am doing pretty good. Just finishing
up two hrs of breathing treatments. Then, will go prepare food for company this
afternoon. I hope today finds you happy and breathing well. - Terri
M.

Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2017

In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)

@bschaper2 Hi
Barb. You can go to the CDC website and find out if you can send a water sample
for testing. I feel like you could. I once sent in a small jar of house dust to
them to make sure it did not contain asbestos. It cost around $30.00 (or less)
We were doing a major remodel on our home in Az on a house built in 1951. All of
the ventilation pipes were wrapped in plastered asbestos. The report came back
negative and they listed what they did find. It was mostly cellulose from the
very old carpet that was in there. Let us know what you find out. - Terri
M.

Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2017

In reply to @jentaylor "Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2..." + (show)

@jentaylor

Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2 months. I was seen at Mayo in Minnesota over a 2 week period. I received so much info from all of the evaluation. I have been overwhelmed & scared & I have been trying to process all of this on my own. It hasn't been going to great so I'm trying to reach out & thought what a better group to talk to than others who are going through similar life experiences. After have a positive MAC culture from my bronchial washings, I was told that I had MAC & need to be treated. Previously (Sept. 2016) they diagnosed me with bronchiectasis. Nothing was seen on my CT scan or X-ray that showed the colonies seen from MAC. One of the big reasons I was going to Mayo was to get an expert opinion from Dr. Askamit. After Dr. Askamit read through my many, many, many records over a course of 10 years, since I first got sick, he concluded that at this time I may have MAC but it should not be treated at this time because it does not appear on a CAT scan. I must tell you that I was shocked by his response as it was completely different than my pulmonologist locally. And to be honest, I seem to have met the criteria to be considered to have MAC & to start treatment. I have many underlying illnesses & it's so hard to sort out what is what. Dr. Aksamit said to wait until it is seen on a CT scan. I have very mixed feelings about this. I am concerned that I should just wait until I become more infected to start treatment. Personally, I'd rather treat it BEFORE it gets worse. I guess I'm the only one who things that. My local pulmonologist changed his mind & decided not to start treatment at this time. Don't get me wrong, I do NOT want take all of these meds that can cause such grief & danger!!! I also don't want to just sit around & wait for things to get worse!!! Am I wrong in thinking that?? I value your opinion. Oh, and I have had the bronchiectasis diagnosis since Sept 2007 based on CT scan but now, when Dr. Askamit looked at a different CT scan, he said he didn't see that. I'm SO confused. I know one thing to be true...I'm in a mess of a health situation with multi system dysfunctional & disease. I am sick every day of my life for 10 years now & without an underlying diaganosis of what disease I have in the lungs. They said I would not make past 2 years but here I am, 10 years later, alive & trying my absolute best to lead as much of a normal life as possible...mostly for my family. I'm back to a point where I am requiring supplemental oxygen again. I had been able to breath on my own for the past 3 years. What changed? We don't know. I go into respiratory failure several times a year resulting in hospitalizations. We still can't answer the question of why my lungs don't convert oxygen from the air I breath in??? Anyway, I apologize for rambling on. I have been so withdrawn & sad, scared & lonely since receiving all of this new information. I also learned I have stage 1 heart failure & other metabolic syndrome that leaves me as the "perfect storm for a cardiac event" as the physician stated it. I ended up at Johns Hopkins a couple weeks ago with an excellent cardiologist who is trying to help my sort things out. My weight is a contributing factor to my alveolib hypoventilation &
We discussed having the stomach sleeve procedure to help me loose weight. There is so much on my mind & I apologize that I just rambeled on without even diving the long note into paragraphs!!! That's just how my mind has been lately. I am in NO way trying to ask for self-pity...I'm just trying to get through my reality of day to day life the best that I can & with the most quality that I can. I'm just so confused right now. Oh, I had another bronch done on Wed. & we sent the washings for culture & this will probably be the ultimate testing to see if the washing show positive for MAC. We won't know for 6 weeks! Again, I welcome your feedback... thanks for taking the time to read this!

Jump to this post

@jentaylor Jen,
did you wear the mask while at the Mayo too? I see lots of patients do that,
particularly the transplant patients.

Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2017

In reply to @jentaylor "Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2..." + (show)

@jentaylor

Jump to this post

@jentaylor Also
wanted to add that most Asian people in large cities ALWAYS wear a mask in
public to keep from catching/spreading illness. Especially since they tend to
get SARS there.

Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2017

In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)

@jentaylor The easy asthyma diagnosis makes me angry too.

Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2017

In reply to @afcardieri "Hi! I'm new here, diagnosed last January, and my name is Filis. Thank you for this..." + (show)

@jentaylor
XXOXXOX - Terri M.

Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2017

In reply to @katemn "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..." + (show)

@katemn So,
what does 'FEW' mean on your lab reports?

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