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.

rconn602 | @rconn602 | Dec 27, 2017
In reply to @judyem "i have been on the triple ABT therapy for 14 months now for MAC/bronchiectasis. In the..." + (show)
@judyem

i have been on the triple ABT therapy for 14 months now for MAC/bronchiectasis. In the last a couple of months I developed a rash and the itchiness is driving me crazy. I went to 2 dermatologists, an allergist/immunologist and to my pulmonologist. I had 2 biopsies, and did a lot of blood work but they could not find a cause of the rash. I tried Anti Itch Cream, a cream with steroids in it, prednisone, etc and it still persists. The dermatologist thought it might be medication-related as did the allergist. My allergist took the lead and told me to eliminate one of the antibiotics (Rifamkin) as 66% of people have the side effect of a rash. Then if the rash does NOT go away, he will eliminate the Ethambutol to see if that is the cause. I am hesitant to do so. I had him call my pulmonologist to discuss but he is on vacation. The allergist said to me that I have been on the treatment for 14 months. Who really knows if 14 months is not as effective as 18 months. They have not done more recent research to know that. So.. I am a little conflicted. I did not take the Rifamkin last night, as I can't continue on like this either. I live in New York and believe I have an excellent medical team on Long Island. Any suggestions?

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Thank you..I will do some research.

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Sophie | @sophie1019 | Dec 27, 2017
In reply to @maggie56 "So happy yet scared to have found this site and your experience & knowledge. After 5..." + (show)
@maggie56

So happy yet scared to have found this site and your experience & knowledge. After 5 yrs of coughing and hacking , my newest pulmonalogist has told me,just last week I have Mac Of course it scares me,,, yet I want to take on the best attitude to face it. 2 yrs ago an infectious disease Dr prescribed Cefadroxil ,,, it threw me into Sjogrene symptoms, a celiac diagnosis, weight loss. It's been a real battle since. I dread the idea of the protocol for this Mac as its antibiotics, which I've had so much of already and the gut is so damaged. How does one take these and heal the gut? Anyhow, I feel blessed to have found others who understand as with most things, unless you experience it you don't know....... Thank you, Margaret

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Hi, I have been dealing with Mac since June of 2016. I have taken the antibiotics, now I am also on an iv drip. I work everyday, don't feel bad at all. This has been a long, long journey....

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Jo Ann K | @jkiemen | Dec 27, 2017

I am glad you feel good. How long do you have to be on the IV drip. Did they say what strain of MAC you have?

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Sophie | @sophie1019 | Dec 27, 2017

Yes I was told, but can't remember the name. How are you feeling????

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2 replies
Sophie | @sophie1019 | Dec 27, 2017

I'm not sure how long I will be on the drip. I have had the PIC line in since October 6, 2017.. I am waiting for blood tests to come back to see how meds are wearing on body....

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Jo Ann K | @jkiemen | Dec 27, 2017
In reply to @sophie1019 "Yes I was told, but can't remember the name. How are you feeling????" + (show)
@sophie1019

Yes I was told, but can't remember the name. How are you feeling????

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I am not feeling too bad since they changed from Rifabutin to Rifampin. I consider myself lucky so far. I hope it continues to go like this.  I think I am a little less tired the last couple days. I actually look
forward to taking my meds because I feel that I am actually doing something about the condition.
 
 

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maggie56 | @maggie56 | Dec 27, 2017

I have been replying to your helpful & caring inputs but it's not letting me post them. Maybe later .....

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3 replies
Jo Ann K | @jkiemen | Dec 27, 2017

Sometimes it doesn't let me reply either.

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5 replies
ling123 | @ling123 | Dec 27, 2017
In reply to @jkiemen "Sometimes it doesn't let me reply either." + (show)
@jkiemen

Sometimes it doesn't let me reply either.

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@maggie56 and @jkiemen I don't have problem replying to any postings. Have you checked to see if you are still logged in? Sometimes I get kicked out and have to re-login in order to reply to a particular posting.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 27, 2017
In reply to @jkiemen "Sometimes it doesn't let me reply either." + (show)
@jkiemen

Sometimes it doesn't let me reply either.

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Hi @maggie56 and @jkiemen, both of your replies appeared in the thread. Have you tried clicking VIEW & REPLY in the email notification, and then posting when on the website?

I think Ling might be right, that you need to login. Let me know if you're still having issues posting. You can send me an email using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

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