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.

ling123 | @ling123 | 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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@nick52 I'm definitely sensitive to some scents. Cigarette smoke is one of them. Perfume is worse, especially the musky type. I feel dizzy and my heart would pound very hard. Sometimes I would have trouble breathing. Cleaning solutions don't seem to bother me much, though.

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terryb1 | @128128terry11t | 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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Some scents give me a headache (especially perfume). Sometimes I may not smell something but I start to cough. Only way to stop it even when I may have left the area is to take a lozenge.

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Jo Ann K | @jkiemen | 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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When I use Hand Sanitizer it makes me cough

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Jo Ann K | @jkiemen | Dec 27, 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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For those of you who are Christians, read about the Miraculous Medal. We all say we are praying for each other to get better. When medications, and early clinical trials are not yet ready for us, we resort to allot of praying. Praying for healing, prayers for our MD's to give us good care, prayers there will be a new treatment soon, prayers for the researchers. We just have to keep praying.

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irene5 Irene Estes | @irene5 | Dec 27, 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 for writing that! God bless you real well!

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Sophie | @sophie1019 | Dec 27, 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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I totally agree. I always pray for complete healing, we just have to have faith that God will heal us...

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judyem | @judyem | Dec 27, 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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Thanks for the guidelines. It looks like the Antibiotic therapy treatment is the same as previously recommended. They do not say the length of treatment. Is it still 18 months?

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maggie56 | @maggie56 | Dec 27, 2017

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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4 replies
unicorn | @unicorn | 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 Margaret. Yes the antibiotics are terrible on the gut. I have been off them for a year and gut much better, but still cannot put weight on. Kind of leaves you with IBS. though I rarely get cramping anymore. I quit drugs because too rough on my system. MAC getting worse off of them, so I am hanging on hoping someone will come up with a less damaging solution. Hopong for some sort of inhalant that doesnt affect organs so much. xo

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ling123 | @ling123 | 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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@maggie56 So sorry to hear that you are experiencing problems with antibiotics that you are taking. I have never been on antibiotics. So I can't give you any valid advice or pointers. But I do hope that others on the site who have been on the drugs can provide you with helpful insights. People here have different diagnoses, different health problems and different experiences with antibiotics. But one thing we have in common is that we all have to face the disease and the fear head on and try our best to live as happy a life as we possibly can. Sharing our experiences and our feelings on this site definitely help all of us achieve that goal. Hope you'll find the answer you are looking for.

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