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.

nick52 | @nick52 | May 20, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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Suzie medication can confuse his mind.  It is not Alzeimer. Specially antibiotic gives you a fuzzy head. You feel confuse.  I know it does to me when I take it. Do not worry Sue! Nick

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nick52 | @nick52 | May 20, 2018
In reply to @suzie2017 "My husband had his bronchoscope yesterday. The report shows terms that I am not familiar with...." + (show)
@suzie2017

My husband had his bronchoscope yesterday. The report shows terms that I am not familiar with. The doctor came out to talk to me but rattled on so fast and I was unable to compare what he said to the report. Here are some of the phrases in the report. Left lower lobe collapsed lung and pushing against the heart, abnormal left main stem bronchus (report goes on to say the same thing about right, left upper, left lower, right upper right middle and right lower lobes) including the subsequent. Washings were obtained in the entire tracheobronchial tree and return was cloudy. Doctor used the words “milky” and said it could represent a new infection. Area of chronically inflamed mucosa was found throughout the tracheobronchial tree. Mucous was copious, green, mucopurulent and thick, underlying mucosa is friable, extrinsic compression was found in the left lower lobe segment. No attempt to do TBBrushing of LLL segment due to friable bronchial mucosa (must mean blood). Does all of this point to end of stage COPD?

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@suzie2017 check the secondary on his antibiotic you will understand more.  I read that collapsed lung is treatable even with chest physiotherapy! Ask another doctor. Nick

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lauriefrancis | @lauriefrancis | May 20, 2018

@nick52 @windwalker I just visited my Mom. We talked about milk thistle. I asked when she noticed the bloating in her stomach. My guess is about 3 years ago. But her gaĺl bladder surgery was 7 yrs ago.
She has also had other surgery in her abdominal area over the years. So how long after surgery can a person develop and adhesion? And what is the treatment? What is the diagnostic protocol?
Also re milk thistle what dose should be administered?
I told my Mom you're praying for her. We are very grateful.

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4 replies
Suzie2017 | @suzie2017 | May 20, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

Jump to this post

My husband was diagnosed with Alzheimer’s about 2 years ago.

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chinasmom | @chinasmom | May 20, 2018
In reply to @1478 "wow, This is good to know! My mother want into the hospital at 7000 ft because..." + (show)
@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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@windwalker, I believe it was called vascular and interventional radiology. Where they cauturize, burn, the blood vessels from inside to get the bleeding under control in the lungs. Hope you are staying well an staying strong!
Becky

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cammerzell | @cammerzell | May 20, 2018
In reply to @1478 "wow, This is good to know! My mother want into the hospital at 7000 ft because..." + (show)
@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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What probiotic do you recommend?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 20, 2018
In reply to @1478 "wow, This is good to know! My mother want into the hospital at 7000 ft because..." + (show)
@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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@chinasmom Hi Becky! I am doing vety well lung-wise. My back had bad pinched nerve. How are you? Thank you so much for posting this info. I tell you, we have the best community here! I made hard copy notes of it in my notebook.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 20, 2018
In reply to @1478 "wow, This is good to know! My mother want into the hospital at 7000 ft because..." + (show)
@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

Jump to this post

@nick52 ?

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gaelawree | @gaelawree | May 20, 2018
In reply to @gaelawree "Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I..." + (show)
@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

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@nick52, Hi Nick thanks for the welcome. I had a bronchoscopy & was diagnosed just last Friday. I also have aspergillis infection in the lungs. I do feel confident with my doctor, he tracked this down, most docs just want to give pills for symptoms. I have thyroid disease & Hoshimoto’s which is an autoimmune disease. I was also on high doses of Motrin for about three years for herniated disk, & then frozen shoulder. I went through a 9 months naturopathic protocol for the thyroid & Hoshimoto’s which worked very well, also cost nearly $4k. I know this is going to mess that progress up & I’ll have to do that over again. I do work in a garden & I also work with horses & there’s lots of dirt in doing that. I’m also allergic to dust & have asthma, what a mess. I’ve been using Advair & Flonase & Proair(albuteral). I see my doctor to talk about the MAC on Thursday. I’ll know what the plan is after that.

REPLY
gaelawree | @gaelawree | May 20, 2018
In reply to @gaelawree "Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I..." + (show)
@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

Jump to this post

@windwalker, I do have confidence in my Pulmonary doctor, he worked at finding the problem, most docs want to give you meds for symptoms. I will be seeing him Thursday to ask questions & Hear what he thinks we can do.

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