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.

judyem | @judyem | Dec 22, 2017
In reply to @windwalker "@Judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If..." + (show)
@windwalker

@judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If it does persist, you may want to have it biopsied for MAC. In rare instances, it can spread to your skin. I don't mean to alarm you, it most likely is not that, but you should be aware. I feel for you, there is nothing worse than persistant itching. I got terrible hives from a sulpha medication once and thought I would go insane from the constant, intense itching over every square inch of my body. You can try taking a bath with one cup vinegar and one cup Epsom salt. Soak awhile. Those two things together draw toxins out of your body and soothe the skin. I do that occasionally; it is very refreshing if nothing else. I hope that you can still manage to enjoy the holidays, BIG HUG!

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I did have it biopsied but I doubt they were looking for MAC. They thought it mite be a skin reaction to gluten, so they tested for that; the biopsy was negative for gluten, parasites, infection but I don't know if they would have said looked for MAC. I have to check that out.

REPLY
judyem | @judyem | Dec 22, 2017
In reply to @maryjo2sell "Katherine, no words for how badly I feel that you are feeling so poorly! Hopefully your..." + (show)
@maryjo2sell

Katherine, no words for how badly I feel that you are feeling so poorly! Hopefully your visit will provide some answers! Please stay in touch with the group and let us know how you are doing! Fondly, Mary Jo

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Thank you! I will keep you posted. Have a great holiday!

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ginak | @ginak | Dec 22, 2017
In reply to @maryjo2sell "TO THE GROUP! I receive emails from Bronchiectasis today and there was one that was very..." + (show)
@maryjo2sell

TO THE GROUP! I receive emails from Bronchiectasis today and there was one that was very important to us as a whole! PLEASE READ THIS! There is a FDA decision on a new drug to treat bronchiectasis and NTM. They want our input but we only have a short time to write in. Please go to https://bronchiectasisnewstoday.com and look for the section on FDA and Linhaliq. It will show you the story and how to write into the FDA and the Advisory committee. The more people who input, the better. We have a very unknown and ,to me, ignored disease. We need all the help we can get to fight infections and stay alive and well. The drug would particularly help with PSEUDOMONAS AERUGINOSA, which right now it very difficult to treat! Just please read the story. Have a wonderful holiday season . Fondly, mary Jo

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I’m glad you were able to put the link, I received an email about it, and took the pictures of the email to share.
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tdrell | @tdrell | Dec 22, 2017
In reply to @heathert "Hi all here are the latest guidelines ontario. Interesting http://www.publichealthontario.ca/en/eRepository/Best_Practices_for_Pulmonary_NTM.pdf" + (show)
@heathert

Hi all here are the latest guidelines ontario. Interesting
http://www.publichealthontario.ca/en/eRepository/Best_Practices_for_Pulmonary_NTM.pdf

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Heathert thanks for posting this article..... interesting .....one statement I have never seen before... NTM Patients will have to be monitored for all their lives.
In May...the 17, 2018 in San Diego.... American Thoracic Society and NTMINFO.Org will be having a joint conference. I believe the ATA will publish current NTM treatment guidelines.
Tdrell

REPLY
nick52 | @nick52 | Dec 26, 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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I have a question for all of you. Are you sensitive to scents like cigarette smoke, cleaning stuff etc.. what happened when you are exposed?

REPLY
nick52 | @nick52 | Dec 26, 2017
In reply to @windwalker "@Judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If..." + (show)
@windwalker

@judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If it does persist, you may want to have it biopsied for MAC. In rare instances, it can spread to your skin. I don't mean to alarm you, it most likely is not that, but you should be aware. I feel for you, there is nothing worse than persistant itching. I got terrible hives from a sulpha medication once and thought I would go insane from the constant, intense itching over every square inch of my body. You can try taking a bath with one cup vinegar and one cup Epsom salt. Soak awhile. Those two things together draw toxins out of your body and soothe the skin. I do that occasionally; it is very refreshing if nothing else. I hope that you can still manage to enjoy the holidays, BIG HUG!

Jump to this post

Hi Windwalker,
If i am right to live in Florida. It would be nice if we can get together after the holidays! We are in Largo now.

REPLY
tdrell | @tdrell | Dec 26, 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?

Jump to this post

Nick52....currently fortunately am not exposed to cigarette smoke....when I was.....I would get a headache and sore throat and the next day would have a cold. Tdrell

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