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.

Moderator
Colleen Young, Connect Director | @colleenyoung | May 5, 2021
In reply to @saaa "Tomo medicamento oral - Azitromicina, Etambutol e Rifampicina e implantarei um cateter PICC para receber amicacina..." + (show)
@saaa

Tomo medicamento oral - Azitromicina, Etambutol e Rifampicina e implantarei um cateter PICC para receber amicacina intravenosa 3 vezes por semana, por 3 meses. Gostaria, por gentileza, de saber mais sobre alguem que tenha utilizado este protocolo e outras opções. Vejo que estão usando alguns medicamentos inalados. Gostaria de saber algo sobre tal protocolo.

English translation
I take oral medication - Azithromycin, Ethambutol and Rifampicin and I will implant a PICC catheter to receive intravenous amikacin 3 times a week, for 3 months. I would like to know more about someone who has used this protocol and other options. I see that they are using some inhaled medications. I would like to know something about such a protocol.

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Saaa, please see this discussion for more experiences from others:
- Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC https://connect.mayoclinic.org/discussion/drug-therapy/

Saaa, consulte esta discussão para obter mais experiências de outros:
- Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC https://connect.mayoclinic.org/discussion/drug-therapy/

REPLY
hauoli | @halford | May 6, 2021
In reply to @sueinmn "Well, I haven't been to NJH but I understand the feeling of having one's life altered...." + (show)
@sueinmn

Well, I haven't been to NJH but I understand the feeling of having one's life altered. Trust me, you will settle into a routine and it gets easier.
Hang in there.
Sue

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Thanks for replying. I keep trying to listen to my body and mind and to gather as much information as I can since I have to live with Bronchiectasis and MAC. So its breathing and eating healthy exercise and expelling sputum. Ill hang in there.

REPLY
saaa | @saaa | May 6, 2021

Obrigada pela acolhida. É muito importante manter nos conectados, compartilhando e dando suporte a cada um do grupo.

REPLY
Dianne | @dpselmark | May 10, 2021
In reply to @halford "My pulmonologist said that I have bronchiectasis and MAC. So for 4 months he has me..." + (show)
@halford

My pulmonologist said that I have bronchiectasis and MAC. So for 4 months he has me on a nebulizer two times a day. One is a saline solution 3% and budesonide .5%. I also have the aerobika that I use when I feel a cough. What my schedule is to walk for an hr in the morning around 6am, then do an hr of yoga. I find the poses that are inverted to release the most phlegm. Then I have some breakfast. Then I begin the nebulizers that takes close to an hr. Its all around 11-11.30 before I do anything else. Then towards evening I try to have dinner at 6pm and then being the second round of my nebulizers. I try like you to stop eating and drinking 3 hrs before going to sleep. I probably have that threat of acid reflux. The Dr. did recommend going to National Jewish Health for the best treatment. Did you go to National Jewish Health?
You are so helpful. Thank you.

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Interesting for at NJH they advised not using Nebulizer except with two-3 hours after eating. My routine is to use before breakfast and early evening before dinner. Their recommendations are based on danger of food aspirations.

REPLY
3 replies
hauoli | @halford | May 10, 2021

Wow, thank you for telling me this. It makes sense what you told me. My Dr. gave me no directions. I can switch and do like you, before eating. All of this takes so much time. Food aspirations, yes! I have been trying to find anyone that has been through a program at NJH,
have you? If so is it worth going to being that I live in Hawaii. Thank you so much!

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Mentor
Sue, Volunteer Mentor | @sueinmn | May 12, 2021
In reply to @dpselmark "Interesting for at NJH they advised not using Nebulizer except with two-3 hours after eating. My..." + (show)
@dpselmark

Interesting for at NJH they advised not using Nebulizer except with two-3 hours after eating. My routine is to use before breakfast and early evening before dinner. Their recommendations are based on danger of food aspirations.

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Interesting. In all my years using a nebulizer, I have never heard that, or experienced any aspiration. My main concern has always been to fit nebulizing into my day, but I will probably try to do it before breakfast and/or dinner.
Sue

REPLY
1 reply
Dianne | @dpselmark | May 12, 2021
In reply to @sueinmn "Interesting. In all my years using a nebulizer, I have never heard that, or experienced any..." + (show)
@sueinmn

Interesting. In all my years using a nebulizer, I have never heard that, or experienced any aspiration. My main concern has always been to fit nebulizing into my day, but I will probably try to do it before breakfast and/or dinner.
Sue

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Interesting difference. They did a test which I had a tiny place where aspiration could occur and I do have Gerd. However, it is included in overAll guidelines.

REPLY
Dianne | @dpselmark | May 12, 2021
In reply to @dpselmark "Interesting for at NJH they advised not using Nebulizer except with two-3 hours after eating. My..." + (show)
@dpselmark

Interesting for at NJH they advised not using Nebulizer except with two-3 hours after eating. My routine is to use before breakfast and early evening before dinner. Their recommendations are based on danger of food aspirations.

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For me going to NJH was a terrific decision. What we deal with...MAC+other bacteria that come amd visit plus bronchial issues are rare for doctors I have visited with in San Antonio. I did not want a doctor who only see MAC patients a few a year...I wanted advice from someone who saw patients like me all day every day. Well worth it. They now work with my local doctors as a team!

REPLY
1 reply
migizii | @migizii | May 12, 2021
In reply to @dpselmark "Interesting for at NJH they advised not using Nebulizer except with two-3 hours after eating. My..." + (show)
@dpselmark

Interesting for at NJH they advised not using Nebulizer except with two-3 hours after eating. My routine is to use before breakfast and early evening before dinner. Their recommendations are based on danger of food aspirations.

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@migizii in reply to hauoli......these are the same directions I was given by my pulmonologist from Mayo, Rochester.

REPLY
1 reply
hauoli | @halford | May 13, 2021
In reply to @dpselmark "For me going to NJH was a terrific decision. What we deal with...MAC+other bacteria that come..." + (show)
@dpselmark

For me going to NJH was a terrific decision. What we deal with...MAC+other bacteria that come amd visit plus bronchial issues are rare for doctors I have visited with in San Antonio. I did not want a doctor who only see MAC patients a few a year...I wanted advice from someone who saw patients like me all day every day. Well worth it. They now work with my local doctors as a team!

Jump to this post

Thanks Dianne, that would be worth going to NJH if they would work with my pulmonologist here in HI. Ill give it some serious thought. I took your advice and nebulize before eating or 3 hrs later and it does seem to make a slight difference. Grateful for your sharing

REPLY
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