(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@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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@heathert

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

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@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?

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@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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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.

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@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….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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@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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@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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@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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@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.

Liked by pfists, maggie56

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@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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@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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@heathert

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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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 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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