(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

Terri Martin, Volunteer Mentor | @windwalker | May 28, 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!

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Absolutely!

Terri Martin, Volunteer Mentor | @windwalker | May 28, 2017

In reply to @jennifernicole "Many of the people posting on here seem to know more that some of the doctors..." + (show)

Jen, those descriptive words you used to describe your scan sounds more like bronchiecstasis than MAC. Do you know if you have that also? The two usually go hand -in-hand. I was told at the conference in D.C., that to get a truly accurate account on whether you are truly infected with MAC is to have THREE sputem samples taken in the mornings of three consecutive days, from a deep cough.. Refridergerate them until you can get them to the lab, and tell the lab all three are only an hour old; or else they won't take them. Even our best Gold Standard institutions don't do this, but that may be changing in the future. You can also request that it be done that way. Everyone has MAC in their lungs, the thing is to find out if they are colonizing.

JK | @contentandwell | May 28, 2017

In reply to @jennifernicole "Hello, I have been reading through these posts for the past several weeks and have learned..." + (show)

@ginak I hope you can avoid it for awhile. Thankfully so far my Barrett's has not been terribly advanced so all I do for it is take omeprazole (prilosec). The more I read about taking those drugs the more I worry though because they say they can lead to Alzheimer's. I am looking forward to my endoscopy to see what state my esophagus is in now. I am hoping it has somehow improved.
JK

Terri Martin, Volunteer Mentor | @windwalker | May 28, 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

Hello Jen, we are all here for you, and we really DO care! - Hugs Terri
M.

Terri Martin, Volunteer Mentor | @windwalker | May 28, 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

Hi Jen, yes....me again. I replied to one of your posts earlier this evening. I am hoping it did not come off as trite. After reading this post to Katherine; I have a better understanding of how much you are dealing with. Did not know you were battling diabetes too on top of everything else. Or that you were hospitalized recently with respiratory failure. Good God woman, who could fault you for feeling so desperate? Dealing with chronic illness is tough. I am sure you are tired of feeling sick and tired. I sure hope you get answers soon to what is going on with your lungs. My heart and prayers go out to you. - Terri M.

Terri Martin, Volunteer Mentor | @windwalker | May 28, 2017

In reply to @jennifernicole "Hello, I have been reading through these posts for the past several weeks and have learned..." + (show)

Good luck with your endoscopy!

Terri Martin, Volunteer Mentor | @windwalker | May 28, 2017

In reply to @ginak "Hi @jentaylor I'm sure no one here thinks you're asking for pity! We're all on this..." + (show)

Jen, I am pretty sure collective prayers have kept me alive over the years.
Believe me, many of us on here never underestimate their power. We will add you
to our list. -Terri M.

Terri Martin, Volunteer Mentor | @windwalker | May 28, 2017

In reply to @ginak "Hi @jentaylor I'm sure no one here thinks you're asking for pity! We're all on this..." + (show)

Gina, you are absolutely right. Having support from this group and the lung
transplant group at the Mayo has eased my fear considerably.

21042 | @21042 | May 28, 2017

In reply to @jennifernicole "Many of the people posting on here seem to know more that some of the doctors..." + (show)

Paula, i agree. The CT scan gives the doctor a base. I, too, had a large nodule on my lungs and was diagnosed with MAC after a sputum culture and put on the 3 big antibiotics. My doctor wanted another CT scan 2 months later, before she did a biopsy to see if it was cancer, which she didnt think it was. The second CT scan showed the size of the nodule had shrunk by 2/3. What a difference. She showed it to my husband and I and it was unbelievable. The meds are working and I'm now back to going to the gym and singing in the choir at church. Amazing that i have more air in my lungs than I've had in a long while. For the first month, it was bad with the nausea and i almost gave up, but my advice to anyone is "dont quit". It gets better. I was also diagnosed with bronchiectisis 23 years ago. Thats under control with nebulizer treatments twice daily. I'm 75 years old, but i can honestly say I can keep up with anyone 25 years younger. Never give in. Ever.!!! Kathi ( 2-10-42)

Terri Martin, Volunteer Mentor | @windwalker | May 28, 2017

In reply to @pamelasc1 "This is a question for Linda who wrote: "but had to stop from last Nov through..." + (show)

Josephine, ask your dr for more details. What is showing up on your
radiology image may be bronchiecstasis or scarring that is not likely to
change. Regular sputem tests should prove if the MAC is under control.

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