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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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 | Mar 6, 2018
In reply to @killelea "Hello, I'm new to all of this( both the illness and the internet group). I was..." + (show)
@killelea

Hello, I'm new to all of this( both the illness and the internet group). I was diagnosed with MAC 6 months ago. I'll go for the 6 month checkup soon. I'm 74 and female. former smoker. I guess I have the profile. I'd welcome any good sources for study or any good suggestions about how to fight it. Thank you.

Jump to this post

@lainey. Sorry to hear all of it.  I would like to tell you that if you have oesophagus issues you may want to request a video deglutition xray.  (See on the internet video deglutition)

I had MAC, lots ofMucus , bronchiectasis, and asphagia.  When i had my video deglutition xray they found out I had asphagia, according to the radiologist it is the cause of my bronchiectasis. I took the professionnal Dr Ohirra probiotic trying to get ride

of the MAC .  When I had a bronchoscopy (wash of the lungs) in september, the lab results said no More bacteria or MAC. Now I have to thicken my liquid to prevent the liquid to go on my lungs.  I am very happy with Dr Ohirra probiotics.  I know that I do not

have any mucus since I use these probiotics and thicken my water.  

I agree with you that we must have faith in God to guide us to the right treatment for healing Lainey!  Stay healthy! nicole

REPLY
Jo Ann K | @jkiemen | Mar 6, 2018
In reply to @killelea "Hello, I'm new to all of this( both the illness and the internet group). I was..." + (show)
@killelea

Hello, I'm new to all of this( both the illness and the internet group). I was diagnosed with MAC 6 months ago. I'll go for the 6 month checkup soon. I'm 74 and female. former smoker. I guess I have the profile. I'd welcome any good sources for study or any good suggestions about how to fight it. Thank you.

Jump to this post

I am starting my 4th month and was doing pretty well other than recent development of palpitations. I hope I can make it to at least 14 months of treatment and get the results you are having

REPLY
nick52 | @nick52 | Mar 6, 2018

@killelea Welcome to the group. A short version of my case.
I was diagnosed with Bronchiectesis (2009)and MAC (2014) in along with some related esophagus issues called dysphagia (2017) . I have never taken the antibiotic cocktail. My main problem was the mucus. Since I’ve been diagnosed with asphagia in 2017 after a video deglutition xray I have to thicken my liquid because it was the caise of my bronchietasis. I am also taking Dr Ohirra professionnal probiotic and had a bronchoscopy in september 2017 to wash the lungs and I do not have the MAC anymore. Since I am thickening my liquid and take those strong probiotic I have no more mucus. If you take the cocktail you may want to keep your immune system strong by taking probiotic 4 hours before or after the antibiotic is ver safe not to interfere. Put your faith in God to guide you to the best solution to stay healthy!

REPLY
15 replies
liliane | @liliane | Mar 6, 2018
In reply to @killelea "Hello, I'm new to all of this( both the illness and the internet group). I was..." + (show)
@killelea

Hello, I'm new to all of this( both the illness and the internet group). I was diagnosed with MAC 6 months ago. I'll go for the 6 month checkup soon. I'm 74 and female. former smoker. I guess I have the profile. I'd welcome any good sources for study or any good suggestions about how to fight it. Thank you.

Jump to this post

Sorry to hear about your palpitations. Which meds are you on?
Many of us with MAC/MAI also have asthma. When I developed palpitations it was because of Dulera , my asthma prevention inhaler. Switching asthma meds did the trick. Speak with your physician about what could be causing your palpitations.
Best wishes on your long road to wellness.

REPLY
killelea | @killelea | Mar 6, 2018

thank you for your response - I'm just learning as much as I can and praying about how to use all the good ideas.

REPLY
2 replies
Jo Ann K | @jkiemen | Mar 6, 2018

Keep up the prayers. We all can do that.

REPLY
1 reply
Jane S. Brown | @macjane | Mar 6, 2018
In reply to @killelea "thank you for your response - I'm just learning as much as I can and praying..." + (show)
@killelea

thank you for your response - I'm just learning as much as I can and praying about how to use all the good ideas.

Jump to this post

I think all responses from group all demonstrate such caring people.

REPLY
Jane S. Brown | @macjane | Mar 6, 2018
In reply to @jkiemen "Keep up the prayers. We all can do that." + (show)
@jkiemen

Keep up the prayers. We all can do that.

Jump to this post

Great idea!

REPLY
lainey | @lainey | Mar 7, 2018
In reply to @nick52 "@killelea Welcome to the group. A short version of my case. I was diagnosed with Bronchiectesis..." + (show)
@nick52

@killelea Welcome to the group. A short version of my case.
I was diagnosed with Bronchiectesis (2009)and MAC (2014) in along with some related esophagus issues called dysphagia (2017) . I have never taken the antibiotic cocktail. My main problem was the mucus. Since I’ve been diagnosed with asphagia in 2017 after a video deglutition xray I have to thicken my liquid because it was the caise of my bronchietasis. I am also taking Dr Ohirra professionnal probiotic and had a bronchoscopy in september 2017 to wash the lungs and I do not have the MAC anymore. Since I am thickening my liquid and take those strong probiotic I have no more mucus. If you take the cocktail you may want to keep your immune system strong by taking probiotic 4 hours before or after the antibiotic is ver safe not to interfere. Put your faith in God to guide you to the best solution to stay healthy!

Jump to this post

Please tell me how to deal with thick liquids. How do you get enough water to meet the daily requirement? The thick gel water is gross. I’m trying to stay hydrated but can not do thin liquids and literally gag trying to get the gell- water down. I’m supposed to drink over 60 ounces of water per day. How can you stand it?!

REPLY
lainey | @lainey | Mar 7, 2018
In reply to @unicorn "I have the hiatal hernia also. I got it when I was taking the MAC pills,..." + (show)
@unicorn

I have the hiatal hernia also. I got it when I was taking the MAC pills, which is common. I think it may be related. I dont take any acid reducers because they are so bad for you but use gravity, and life alterations, exercise, good foods, eating low fat and early, etc. I'v found the symptoms come and go. Now I barely feel my stomach coming up but 2 months ago everything caused it, I find if I can go to sleep fast, when I wake up in night, all symptoms are gone and I can stretch out almost flat! love that. I wear a mask and avoid sick people, we have to. I'm going for doc appt. in hospital and wearing mask for sure. Going on cruise to mexico with Redhats and bringing mask! Might paint red lips on it haha Christa

Jump to this post

Cool idea! Thanks for the encouragement Sounds like you are making the best of it with a Can- Do attitude!

REPLY
View MoreView Less
Please sign in or register to post a reply.