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.

carla1196 | @carla1196 | Jan 23, 2018
In reply to @suzylulu "I am restarting the drugs for MAC. - Ethambutol, rifampin, clarithromycin. Was on the big 3..." + (show)
@suzylulu

I am restarting the drugs for MAC. - Ethambutol, rifampin, clarithromycin. Was on the big 3 several months ago but got so sick had to be taken off. So we are trying again-3 times a week. Are there any suggestions on best time of day to take and typical side effects. Thanks everyone.

Jump to this post

@suzylulu, I am on the 3 antibiotics now for the past 8 months. I did have to go off the Ethambutol last month due to having such difficulty breathing. So far the only other real side effect I have is horrific body pain and joint pain. I am sure that is from the antibiotics as well but you do what you need to do to try to get threw this. I take Clarithromycin 500 mg 2 times a day and I also take Rifampin 300 mg 2times a day. I also take morphine and oxycodone for the pain. If I can be of any help please text me.
I wish you the very best

REPLY
boomerexpert | @boomerexpert | Jan 23, 2018
In reply to @windy935 "My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011--and probably..." + (show)
@windy935

My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011--and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks--no change. So I had an MRI--I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.

I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me--the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.

I am happy to be in touch with others who have MAC and know it occurs more in women than in men.

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@windy935 I too have MAC, Bronch, in addition to RA...Lung exercises are crucial and helpful...I do cardio to the extent I can so I'm accelerating my breathing...whatever works for you!

REPLY
Jo Ann K | @jkiemen | Jan 23, 2018
In reply to @suzylulu "I am restarting the drugs for MAC. - Ethambutol, rifampin, clarithromycin. Was on the big 3..." + (show)
@suzylulu

I am restarting the drugs for MAC. - Ethambutol, rifampin, clarithromycin. Was on the big 3 several months ago but got so sick had to be taken off. So we are trying again-3 times a week. Are there any suggestions on best time of day to take and typical side effects. Thanks everyone.

Jump to this post

I had pain with rifabutin and was changed to rifampin and that helped. Maybe it's the rifampin as it is in the same class

REPLY
Jo Ann K | @jkiemen | Jan 23, 2018
In reply to @suzylulu "I am restarting the drugs for MAC. - Ethambutol, rifampin, clarithromycin. Was on the big 3..." + (show)
@suzylulu

I am restarting the drugs for MAC. - Ethambutol, rifampin, clarithromycin. Was on the big 3 several months ago but got so sick had to be taken off. So we are trying again-3 times a week. Are there any suggestions on best time of day to take and typical side effects. Thanks everyone.

Jump to this post

I notice on my pill days water seems to taste different

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Jo Ann K | @jkiemen | Jan 23, 2018
In reply to @suzylulu "I am restarting the drugs for MAC. - Ethambutol, rifampin, clarithromycin. Was on the big 3..." + (show)
@suzylulu

I am restarting the drugs for MAC. - Ethambutol, rifampin, clarithromycin. Was on the big 3 several months ago but got so sick had to be taken off. So we are trying again-3 times a week. Are there any suggestions on best time of day to take and typical side effects. Thanks everyone.

Jump to this post

I take rifampin on an empty stomach and Azithromycin and ethambutol with food. I have to tell you all. It has taken be 62 years and the big 3 to clear up my adult acne breakouts. Not the way I had hoped to get rid of it.

REPLY
nick52 | @nick52 | Jan 23, 2018
In reply to @suzylulu "I am restarting the drugs for MAC. - Ethambutol, rifampin, clarithromycin. Was on the big 3..." + (show)
@suzylulu

I am restarting the drugs for MAC. - Ethambutol, rifampin, clarithromycin. Was on the big 3 several months ago but got so sick had to be taken off. So we are trying again-3 times a week. Are there any suggestions on best time of day to take and typical side effects. Thanks everyone.

Jump to this post

@ mac5ia , thanks for sharing with us! We can all relate to what you are experiencing. Chobani greek Yogurt may not be such a good idea since it has probitotic and it give you good bacteria and the antibiotic kills them. You must ght want to check with a drug specialist like a pharmacist it can interfere with your antibiotic but it would be a good idea to take a good strong probiotic in the morning to give yourself good bacteria. It is so important when you take antibiotic. It will also take good care of your gut! My doctor recommend it when I take antibiotic for any infections. Keep taking good care of yourself! I have never taken these antibiotic instead I take Clear Lung when I feel my lung might have an issue to cough the mucus and use aDr Ohirrah probiotic. We will send you good vibes of energy! You can get rid of it with your courage! Xxoox

REPLY
nick52 | @nick52 | Jan 23, 2018
In reply to @windy935 "My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011--and probably..." + (show)
@windy935

My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011--and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks--no change. So I had an MRI--I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.

I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me--the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.

I am happy to be in touch with others who have MAC and know it occurs more in women than in men.

Jump to this post

@windy935 Dear Mariah You are in the right team ! We all have our little thing to keep ourself healthy! It is nice to share what we do since it work good for us doesn’t mean it will work for others. The only way to know is to try it the same way we try whatever doctors recommend. As boomerexpert says Lung ecercises is crucial and cardio help keep my breathing normal for me too! I have never taken the antibiotic cocktail when I saw the specialist doctor for the MAC but i have done some research and find Clear Lung by Ridgecrest to clear the mucus in my lungs! I tried it and it worked for me. I also use a good strong probiotic to keep my immune system strong to fight the bad bacteria . My lung docor have also done 2 broncoscopy one on 2014 when they found the MAC and one this fall confirming no more MAC. My doctor said broncoscopy washes the tree bud and clean it from whatever goes in because it is dilated I felt really good after. We must do everything possible to keep ourself healthy. I thank god everyday for the great doctors I have in Canada in a very small province NB. They have a lot of knowledge. With your determination and your courage you will be able to find the right medication for you. Keep up the good work taking care of yourself!

REPLY
nick52 | @nick52 | Jan 23, 2018
In reply to @suzylulu "I am restarting the drugs for MAC. - Ethambutol, rifampin, clarithromycin. Was on the big 3..." + (show)
@suzylulu

I am restarting the drugs for MAC. - Ethambutol, rifampin, clarithromycin. Was on the big 3 several months ago but got so sick had to be taken off. So we are trying again-3 times a week. Are there any suggestions on best time of day to take and typical side effects. Thanks everyone.

Jump to this post

@sysylulu, i have never taken the big cocktail but when I take antibiotic I try to take them at or supper time so I can take my probiotic in the morning not to interfere and to prevent too much side effects. You are the only one who can find the best time. Probiotic will give you good bacteria but you need a 30 billions and more to keep your immune system strong. Home many doctors are recommending them. (Specially since the C difficile where elder people were dying from)

REPLY
boomerexpert | @boomerexpert | Jan 24, 2018

Call for comments to the FDA! https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/64/The-FDA-NEEDS-to-Hear-from-You
Here's what I emailed to the bunch of em' listed (using the guidelines given at the site above):

"I have bronchiatisis and MAC (and RA…but who’s counting…). Current treatment for bronch (and MAC) is grueling, toxic to the system, and very old school (piling on more heavy antibiotics as what the medical community has currently doesn’t work well anymore…).

I understand you have refused to approve Linhaliq (I am not associated with Aradigm), an inhaled version of ciprofloxacin that has already undergone several clinical trials. Something that could work far better without toxically engaging the rest of my system in treatment (as is the case w/current oral treatments – nausea; extreme fatigue, significant weight loss), and I understand you won’t approve it for reasons such as:
• concern over antibiotic resistance over time (do you think that won’t happen with current treatment protocol?)
• the question wasn’t posed properly (you’d approve for reduction in frequency of exacerbations vs. prolonging initial onset)
• time to first exacerbation is not considered the most appropriate outcome for the bronchiectasis population as it may not adequately reflect whether patients truly do better and feel better on the new treatment (a treatment that extends the time before first exacerbation would be very welcome….we’ll be happy to partake in another clinical trial to prove that with it we can stay well longer).
This shows a significant lack of patient focus, since we need something better than the current treatment devised 25 years ago…and we don’t care in which way it works best, we care that it’s been shown to work.

I, as one of the millions of us w/bronch (many like me with MAC as well)…and the number is growing exponentially…have watched as little meaningful research is done to devise 21st century treatments (that we know can be easily created with just the will to do so) while losing lung function, and getting sicker rather than better (given the current treatment is as bad as the infection). I implore you to reconsider, and do whatever it takes to get us something – this year - that works better than a decades’ old treatment. As I’m sure you hear daily, our lives are literally counting on it.

Thank you.
Terri Benincasa"

Hope all will write...comment period closes Friday.

REPLY
15 replies
unicorn | @unicorn | Jan 24, 2018
In reply to @boomerexpert "Call for comments to the FDA! https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/64/The-FDA-NEEDS-to-Hear-from-You Here's what I emailed to the bunch of em'..." + (show)
@boomerexpert

Call for comments to the FDA! https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/64/The-FDA-NEEDS-to-Hear-from-You
Here's what I emailed to the bunch of em' listed (using the guidelines given at the site above):

"I have bronchiatisis and MAC (and RA…but who’s counting…). Current treatment for bronch (and MAC) is grueling, toxic to the system, and very old school (piling on more heavy antibiotics as what the medical community has currently doesn’t work well anymore…).

I understand you have refused to approve Linhaliq (I am not associated with Aradigm), an inhaled version of ciprofloxacin that has already undergone several clinical trials. Something that could work far better without toxically engaging the rest of my system in treatment (as is the case w/current oral treatments – nausea; extreme fatigue, significant weight loss), and I understand you won’t approve it for reasons such as:
• concern over antibiotic resistance over time (do you think that won’t happen with current treatment protocol?)
• the question wasn’t posed properly (you’d approve for reduction in frequency of exacerbations vs. prolonging initial onset)
• time to first exacerbation is not considered the most appropriate outcome for the bronchiectasis population as it may not adequately reflect whether patients truly do better and feel better on the new treatment (a treatment that extends the time before first exacerbation would be very welcome….we’ll be happy to partake in another clinical trial to prove that with it we can stay well longer).
This shows a significant lack of patient focus, since we need something better than the current treatment devised 25 years ago…and we don’t care in which way it works best, we care that it’s been shown to work.

I, as one of the millions of us w/bronch (many like me with MAC as well)…and the number is growing exponentially…have watched as little meaningful research is done to devise 21st century treatments (that we know can be easily created with just the will to do so) while losing lung function, and getting sicker rather than better (given the current treatment is as bad as the infection). I implore you to reconsider, and do whatever it takes to get us something – this year - that works better than a decades’ old treatment. As I’m sure you hear daily, our lives are literally counting on it.

Thank you.
Terri Benincasa"

Hope all will write...comment period closes Friday.

Jump to this post

Right on sistah!! So beautifully written, and so true. Give em hell....

REPLY
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