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.

lindam272 | @lindam272 | Jun 1, 2017

One more thing - I also plan on asking for a CT scan when I go back to my ID doc in July. It will have been just over 6 months from my diagnosis and previous scan. Does that seem right? Can you tell the difference this soon on the scans if there is progress? Linda

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3 replies
Katherine, Alumni Mentor | @katemn | Jun 1, 2017
In reply to @lindam272 "Thank you! I had my hearing tested Jan 10th but then forgot. The audiologist was supposed..." + (show)
@lindam272

Thank you! I had my hearing tested Jan 10th but then forgot. The audiologist was supposed to send a reminder card and never did so I just went back today. Very miniscule changes so all is good. I have been getting my eyes checked at the opthamologist every 4-6 weeks but will go quarterly now since all appears stable. I have the vision test app on my phone to use in between visits. Thanks so much! Linda

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@lindam272, Linda .. what is the name of your app .. and how did you find it .. it would be useful info for my File Cabinet. I think you mentioned before but I didn't make note of it. Hugs! Katherine

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Katherine, Alumni Mentor | @katemn | Jun 1, 2017

@lindam272, Linda, ask but I kind of think not .. the doctors are concerned about radiation .. more likely they will do an Xray. I just had a CT scan .. had not had one done since 2014. They definitely can see changes in the Xray though .. ASK TO SEE where the changes are .. and ask for an explanation of where/what! Remember .. "Knowledge is Power"! WE are in the driver's seat .. understand the changes in your disease process. Linda, thank you for all your hard work while I am healing .. good job .. keep it up .. I have up and down days .. mostly down so keep up the good work .. ALL OF YOU .. named or NOT! Hugs to all! Katherine

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2 replies
lindam272 | @lindam272 | Jun 1, 2017
In reply to @anr38 "they aren't checking my hearing on Azythromiacin?! They just had me feel out a survey regarding..." + (show)
@anr38

they aren't checking my hearing on Azythromiacin?! They just had me feel out a survey regarding my hearing now, but they have never said anything about checking it. I had to get my eyes checked for a baseline of my vision before i started this antibiotic. how about you? how long have you been on this antibiotic and how do you feel on it? Its causing me problems going to sleep.

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@anr38 - You should be getting your hearing checked. Katherine's guidelines indicated quarterly. I had mine checked shortly after I began the drugs (started drugs in Dec - checked hearing 1/10) but then forgot until just this week. So I went 6 months without testing. My vision was tested every 4-6 weeks but we are now going quarterly since everything has been stable. I have an app on my phone for vision testing that I will do in between.

I've been pretty good on these drugs. The Rifampin is the hardest for me but it's been tolerable. It seems like the worst part for me is headaches. I haven't had any problems going to sleep but I take all mine before noon or 1:00 for that very reason. Linda

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lindam272 | @lindam272 | Jun 1, 2017
In reply to @lindam272 "Thank you! I had my hearing tested Jan 10th but then forgot. The audiologist was supposed..." + (show)
@lindam272

Thank you! I had my hearing tested Jan 10th but then forgot. The audiologist was supposed to send a reminder card and never did so I just went back today. Very miniscule changes so all is good. I have been getting my eyes checked at the opthamologist every 4-6 weeks but will go quarterly now since all appears stable. I have the vision test app on my phone to use in between visits. Thanks so much! Linda

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Katherine, It doesn't have a name. I just went to the app store on my phone and typed in vision test and picked a free one. That is what is says under the icon on my phone screen - "vision test." There is a visual acuity test, a color blindness test, a test for astigmatism and something else. It's a good way to keep track in between dr visits.

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lindam272 | @lindam272 | Jun 1, 2017

Katherine, That makes sense. I'll ask for an xray. I had him show me the changes when I saw him on my first visit and he compared CT scans to one I had done a couple of years before for something else. I agree that we have to arm ourselves with as much knowledge as we can. Katherine, I'm grateful I've been able to help a little while you have been down. I am so grateful to everyone on this forum for all the help I have received. I want to give back as much as I can. I'm praying for your healing and your husband's healing! Linda

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Katherine, Alumni Mentor | @katemn | Jun 1, 2017

@lindam272 Linda, thanks .. I have added the app info to my File Cabinet! Hugs to all! Katherine

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 1, 2017
In reply to @jennifernicole "Hello, I have been reading through these posts for the past several weeks and have learned..." + (show)
@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn't clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn't have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Touché, Katherine! And that's how it should be. We're glad you're taking care of yourself.

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chinasmom | @chinasmom | Jun 1, 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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Ditto!!!!!have a wonderful day connect people!!! You are all loved!!!
Becky

REPLY
chinasmom | @chinasmom | Jun 1, 2017
In reply to @jennifernicole "Hello, I have been reading through these posts for the past several weeks and have learned..." + (show)
@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn't clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn't have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

Jump to this post

Im sorry i haven't been able to help with others. Im just having a hard time keeping and catching up. I hate it that someone may feel that no one is here for them. Thanks to everyone for being here for each other. Your stories are all worth telling and you deserve answers. We all do. Stay strong everyone. The answers will come.
You are all loved!
Becky

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