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.

jr2366 (Jennifer) | @jr2366 | Dec 17, 2020
In reply to @Paula_MAC2007 "I was diagnosed with MAC in Feb 2008 (after having intermittent symptoms for 3 years that..." + (show)
@Paula_MAC2007

I was diagnosed with MAC in Feb 2008 (after having intermittent symptoms for 3 years that got progressively worse). For 4 yrs, 3 months (Feb 2008 - April 2012), I was on the 3 standard drugs for MAC . I had some side effects from the drugs but gradually they went away or I learned how to deal with them. If my routine got out of whack (like on vacation) I suffered.

Over the years, I grew to feel like my old self - although as a high energy person, I was somewhat sluggish from the medication. Last April, I negotiated with my pulmonologist to go off the drugs. What a relief! Was like a weight had been lifted . . . I felt much lighter and less sluggish. While my MAC was not gone, my lesions had shrunk over the years of antibiotics. I considered the MAC as hibernating or resting!

Eight months later (December 2012) I began experiencing the cough (which at times results in spasms) and tiredness. Since Feb, I have been on two different antibiotics from my Internist - to rule out a severe sinus infection. No dice! Yesterday (March 2013) I saw my pulmonologist who, before assuming it is MAC and resuming the meds, wants to do a lung lavage and CT scan. Will do this within the next two weeks.

Incidentally, my Internist did a lot of blood workup recently and my Vitamin D is very low. Am now taking 50,000 IU for 12 weeks and then repeat the tests. My pulmonologist yesterday mentioned there is some connection between Vitamin D and lung issues but it's not real concrete yet.

So my MAC appears to no longer be 'resting'.

I will follow this blog with great interest. I live in Wisconsin, in the part of the upper Midwest where MAC is found. Yet MAC is not found in some other Great Lake states. Sure is a mystery.

I WOULD LOVE TO GET IN A STUDY WITH OTHERS WITH MAC!!!!!

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Hi Paula I was wondering how you are now with Mac I was just diagnosed with MAC 2 weeks ago I’m now on medication for it it’s an inhaler I take through a nebulizer I’m new to all this and very nervous at the same time I’m scared actually is there anything you can help me to feel better

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mammie3 | @mammie3 | Dec 18, 2020

I was recently diagnosed with MAC. I've read that the bacteria can grow in your plumbing. Has anyone had their water tested, or do you drink bottled water to be safe?

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3 replies
kathyhg | @kathyhg | Dec 18, 2020

We got a reverse osmosis system and buy distilled water if we aren’t home. There have been other good suggestions on this forum too.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Dec 18, 2020
In reply to @mammie3 "I was recently diagnosed with MAC. I've read that the bacteria can grow in your plumbing...." + (show)
@mammie3

I was recently diagnosed with MAC. I've read that the bacteria can grow in your plumbing. Has anyone had their water tested, or do you drink bottled water to be safe?

Jump to this post

It can -@windwalker do you still have the water testing link? We operate under the assumption that we have no NTM in our pipes. Because we have all copper plumbing and a tendency to form "pink slime" (methylobacter) which doesn't coexist with NTM, we haven't tested. Stomach bacteria and acid kill mycobacteria, so unless you have GERD and aspirate the water, probably not much risk there.

Aerosolized mist, as from a steamy shower or hot tub, is a bigger risk for infection. The way to deal with this is to keep the water heater at about 140F, which kills the bacteria, and run hot water through the pipes for a couple minutes (venting steam with fan/open window) before turning to temp for shower. Also use a showerhead that doesn't form a mist, but rather much larger drops, sometimes called a rainfall shower. Some here also disinfect the showerhead periodically with vinegar.

Sue

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tdrell | @tdrell | Dec 18, 2020
In reply to @mammie3 "I was recently diagnosed with MAC. I've read that the bacteria can grow in your plumbing...." + (show)
@mammie3

I was recently diagnosed with MAC. I've read that the bacteria can grow in your plumbing. Has anyone had their water tested, or do you drink bottled water to be safe?

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Mammie3... I drink bottled spring water and make own ice with it. My rationale is that
-SE wisconsin where I live is considered a “hotspot” for NTM.
-I have severe GERD and aspirate what’s in my tummy into my lungs hence how I have had MAC in lungs several times.
Lots more on water/plumbing on Nationaljewish.org YouTube videos workshops on YouTube by expert Dr Falkingham.
People with well water usually are safe to drink it. Tdrell

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1 reply
Jennifer | @megan123 | Dec 18, 2020
In reply to @mammie3 "I was recently diagnosed with MAC. I've read that the bacteria can grow in your plumbing...." + (show)
@mammie3

I was recently diagnosed with MAC. I've read that the bacteria can grow in your plumbing. Has anyone had their water tested, or do you drink bottled water to be safe?

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@mammie3.... I boil my water for 10 minutes, to kill MAC.. there is still MAC in bottled water, but far less

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jr2366 (Jennifer) | @jr2366 | Dec 18, 2020
In reply to @tdrell "Mammie3... I drink bottled spring water and make own ice with it. My rationale is that..." + (show)
@tdrell

Mammie3... I drink bottled spring water and make own ice with it. My rationale is that
-SE wisconsin where I live is considered a “hotspot” for NTM.
-I have severe GERD and aspirate what’s in my tummy into my lungs hence how I have had MAC in lungs several times.
Lots more on water/plumbing on Nationaljewish.org YouTube videos workshops on YouTube by expert Dr Falkingham.
People with well water usually are safe to drink it. Tdrell

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Thank you so much I was just told filtered water from my refrigerator is good as long as you change the filter and I wash my vegetables with boiled water. I also was told to clean my shower head with with bleach or vinegar. And if you’re cannot remove it put a bag around it with the liquid in it . I’m so new to all this I’m trying to learn this as I go along. Let’s keep in touch we will learn from each other . I take Arikayce everyday through a mini nebulizer. I have to do this for 1 year to 18 months , Not happy about this I only started 3 days ago but I have to in order to get rid of this MAC thanks so much for your input Jennifer

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3 replies
jr2366 (Jennifer) | @jr2366 | Dec 18, 2020
In reply to @irene5 "@jr2366 welcome to this knowledgeable and caring group. I am sorry you were diagnosed with MAC..." + (show)
@irene5

@jr2366 welcome to this knowledgeable and caring group. I am sorry you were diagnosed with MAC but glad you found Mayo Connect. I don’t know much, but I know Arikayce is taken after other treatments didn’t work or the patient was unable to tolerate the Big 3 as the medications are called. Arikayce requires training with a nurse and is very expensive. I have never heard of someone being “ put” on Arikayce. It’s a big deal! I had to fill out paperwork with my ID doctor and be ok’d by the company for the trial. And then I had to be be trained virtually by a nurse on how to use it. You said your doctor “put” you on it. Are you seeing an ID doctor? I read your posting like four times to make sure I read it correctly. When I was first diagnosed with MAC I went to a pulmonologist and then an infectious disease doctor. I am perplexed. Do you have symptoms? Again- welcome. You will find lots of answers here. irene5

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Hi Irene so I saw a pulmonologist since last December I was sick with pneumonia I then took several rounds of Antiobiotics predisone and several xrays Cat scans pet scans lung biopsy and even bronchoscopy at Sloan In August all in one year ugggh to see why my scans were coming back as something was inflamed inside lung and I had a nodule that’s was Little larger than 1st few scans . I’ve done it all they determined it is Mac, so I took all my scans to a pulmonologist where I live and he read my scans and paperwork and said I need to be on arikayce for 12-18 months so I’m on this for 3 days now I have a ways to go . I also have lung pain right side I told my dr that as well, he said yes that can happen Irene please get back to me thanks you’ve been helpful to me I feel alone in this but now I see there’s others. Thanks Irene

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2 replies
rvan | @rvan | Dec 18, 2020
In reply to @jr2366 "Hi Irene so I saw a pulmonologist since last December I was sick with pneumonia I..." + (show)
@jr2366

Hi Irene so I saw a pulmonologist since last December I was sick with pneumonia I then took several rounds of Antiobiotics predisone and several xrays Cat scans pet scans lung biopsy and even bronchoscopy at Sloan In August all in one year ugggh to see why my scans were coming back as something was inflamed inside lung and I had a nodule that’s was Little larger than 1st few scans . I’ve done it all they determined it is Mac, so I took all my scans to a pulmonologist where I live and he read my scans and paperwork and said I need to be on arikayce for 12-18 months so I’m on this for 3 days now I have a ways to go . I also have lung pain right side I told my dr that as well, he said yes that can happen Irene please get back to me thanks you’ve been helpful to me I feel alone in this but now I see there’s others. Thanks Irene

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JR , what were your symptoms prior to your diagnosis ?

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2 replies
jr2366 (Jennifer) | @jr2366 | Dec 18, 2020
In reply to @sueinmn "Hi Jennifer, I will repeat Irene's welcome to Mayo Connect. We are a community of people..." + (show)
@sueinmn

Hi Jennifer, I will repeat Irene's welcome to Mayo Connect. We are a community of people living with a great variety of conditions. We share our experiences and help each other along the way. We are not medical professionals, and do not give medical advice, but do talk about our challenges and successes.

I agree with Irene that it sounds unusual to begin treatment with Arikayce, can you please tell us about your symptoms, how you were diagnosed and what the doctor told you about this treatment?
Sue

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Hi Sue I was sick back in December 2019 and every X-ray and ct scan I took it showed fuzziness in my scans, inflamed so My pulmonologist put me on antiobiotics 3 rounds of it and predisone pills did repeat ct scans and they were showing nodule slightly larger still inflamed so they decided to do a lung biopsy so I did that dr recommend surgery to cut out nodule that was slightly larger I said no way Im Going to Manhattan to Sloan Because now I’m feeling pain so I did I went in To do this last August to see what was going on and for a second opinion thank god I did , dr told me let’s do a bronchoscopy so I did that and that’s when he said it was MAC I then followed up with another pulmonologist where I live Cause my first one I didn’t trust and My new pulmonologist he said take Arikayce so it’s been 3 days on it so far Praying I get better he says I need to be on this for 12-18 months I had training today for it to make sure I was doing it correctly when I clean unit and if I’m using nebulizer correctly. Write me back sue if you could thanks how are you feeling tell me about your experience as well I’m glad we can chat with each other I feel little better that we could do this . Thanks

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