(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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

@windwalker

@heathert, I hope you will always be with us on this Mayo site. I would miss you too much if you left. I mean it. You and I go way back already. Having a disease with so many uncertainties; it is nice to have the constant of having our familiar comrades. That goes for the rest of you 'long timers'. You know who you are! Sending my love and appreciation out to all of you.

Jump to this post

@windwalker Thanks so much Terri I would miss all of you also if I left, so I will not be leaving.. You and I definitely go way back ,along with others on this site, you are all like family to me and have helped me no end along the way. Being able to help others with MAC-MAI is also wonderful, I know how I felt when I was diagnosed, so scary. Right back at cha with the love and appreciation!!!!!!

REPLY
@sounder27

Windwalker. Thanks so much for your good wishes. I have had a little setback with the Arikayce treatment. After 10 days I spiked a fever for 2 days with a rusty/Smokey cough and headache that lasted about a week and a half. Pulmonologist wasn’t sure if it was a reaction to the Arikayce or a virus. He advised that I wait until symptoms subsided and then try the Arikayce again which I will be doing this week.

Jump to this post

@sounder27 All the best with restarting the Arikayce, hopefully it was a virus.

REPLY
@ling123

@sounder27 I also have trouble with coughing when I'm lying down. But once I fall asleep, coughing stops. I have water by my bedside at all times to try to lubricate my throat. Very annoying. Wish it would stop.

Jump to this post

@sounder27 How long have you had these allergies for , just while you have had MAC or longer

REPLY
@heathert

@sounder27 How long have you had these allergies for , just while you have had MAC or longer

Jump to this post

Heathert. I was diagnosed with bronchiectasis and Mac about 5 years ago after a cat scan for a possibly perforated esophagus. I had been coughing and short of breath for a year or so, which was attributed to post nasal drip and my afib. As far as the allergies go, I’ve had them for many years …well before I was diagnosed with Mac. Especially have trouble in large gatherings when people wear colognes. I also have sensitivities to foods and many antibiotics. I use fragrance free everything…soaps, detergents, and all natural clothing and bedding. Unfortunately, my condo has carpeting in the bedrooms and it is a costly proposition to put in hardwood floors. Won’t be doing that for awhile.

REPLY

@sounder27 thank you for that. Everything else complicates what is causing what. Very tricky for us.

REPLY
@boomerexpert

@ling123 For what reason do you not do another round of allergy shots?

Jump to this post

I have gone through the "build-up" phase and the "maintenance" phase. The whole process took about 5 years to complete. I don't believe you can repeat it and receive better or even same result. And I doubt the doctors would even let me repeat it. I understood from get go that the treatment might or might not work and, even if it worked, it might not last forever.

REPLY
@heathert

@windwalker Thanks so much Terri I would miss all of you also if I left, so I will not be leaving.. You and I definitely go way back ,along with others on this site, you are all like family to me and have helped me no end along the way. Being able to help others with MAC-MAI is also wonderful, I know how I felt when I was diagnosed, so scary. Right back at cha with the love and appreciation!!!!!!

Jump to this post

Thanks Heather @heathert for planning to stick by us. You've meant a lot to us too — hugs!

Liked by heathert

REPLY
@sounder27

Ginak. That’s certainly something to think about. I have coughed unproductively until I gag and my nose runs!! It seems to be especially bad when I’m trying to fall asleep…so annoying. Also I do have many allergies to things such as perfumes, dust, going outside in winter etc. This training may be worth a try.

Jump to this post

@ginak thanks very much for the info about Behavioral Cough Suppression Therapy (BCST) training. This cough is really, really frustrating sometimes. (Sometimes I have coughed so hard I have to wear an incontinence pad in case I wet myself — that's never ever happened to me before! It's very undignified, laugh)

Liked by ginak

REPLY
@heathert

@sounder27 All the best with restarting the Arikayce, hopefully it was a virus.

Jump to this post

Has anyone had Clofazimine before? What was it like?
My pulmonologist / thoracic specialist has taken me off Rifampin because it was interacting too much with all my heart, thyroid and cholesterol drugs. It's being replaced by Clofazimine, which I have to start tomorrow night, with the Azithromycin and Ethambutol.

REPLY
@anniepie

@ginak thanks very much for the info about Behavioral Cough Suppression Therapy (BCST) training. This cough is really, really frustrating sometimes. (Sometimes I have coughed so hard I have to wear an incontinence pad in case I wet myself — that's never ever happened to me before! It's very undignified, laugh)

Jump to this post

Hi Anniepie!! I went to physical therapy to help my coughing and incontinence but when it came down to it I was just coughing so much and so hard all the time (I use to go through a Big box of Kleenex) in a day for the last year until I started therapy in August —5 antibiotics—3 oral and 2 IV’s for 2 months. I wore a # 6 Always—-bladder discreet pad —-I now just continue with a much lighter pad because I don’t want an accident and I believe that coughing is a good thing to get that stuff out of your lungs. Good luck—to all of my sweet confidantes —thanks for sharing❤️—I HATE coughing🥵🥵🥵 Judy

Liked by tdrell

REPLY
@anniepie

Has anyone had Clofazimine before? What was it like?
My pulmonologist / thoracic specialist has taken me off Rifampin because it was interacting too much with all my heart, thyroid and cholesterol drugs. It's being replaced by Clofazimine, which I have to start tomorrow night, with the Azithromycin and Ethambutol.

Jump to this post

I have been on Clofazamine for about a month and a half now and I have not had any problems with it —I live in Florida so I have a tan so if it’s coloring my skin I don’t know I haven’t had any kind of reactions with it at all.☺️🤞🤞🤞🤞🤞 I always take it with food like it says.

REPLY
@sounder27

Windwalker. Thanks so much for your good wishes. I have had a little setback with the Arikayce treatment. After 10 days I spiked a fever for 2 days with a rusty/Smokey cough and headache that lasted about a week and a half. Pulmonologist wasn’t sure if it was a reaction to the Arikayce or a virus. He advised that I wait until symptoms subsided and then try the Arikayce again which I will be doing this week.

Jump to this post

So sorry that it might be Arikayce. I'm doing fairly well on it 3x a week with lots if bad shortness of breath for a couple of hours afterwards. Best of all, no pseudomonas or Klebsiella in the October sample. I hope you can use it and it works for you.

REPLY
@anniepie

@ginak thanks very much for the info about Behavioral Cough Suppression Therapy (BCST) training. This cough is really, really frustrating sometimes. (Sometimes I have coughed so hard I have to wear an incontinence pad in case I wet myself — that's never ever happened to me before! It's very undignified, laugh)

Jump to this post

@anniepie Our constant coughing is certainly very annoying to us and to others. If I cannot stop coughing at bedtime or during a catscan procedure. I use sore throat spray to numb the sensation in my throat temporarily. Our coughs are certainly a good thing as they clear our lungs. I also have bladder leaks too and have to tell the lab people I need to take my sputum cup to the bathroom to which they inform me they don't need a urine sample. I have to laugh when I tell them they will get a urine sample on the chair if i cannot take it into the bathroom and sit on the toilet while I try to forcefully cough to get anything out. More times than not I take my cup home because I cannot get any sputum out.
I went straight from period pads to bladder leak pads and early menapause. I have no shame in saying that. I did try natural remedies and many pessarys. I take hormone replacement and that was the only thing that helped with my menopause symptoms.
I also wear a mask every time I leave my home and to take my dog out it helps keep the cold air or the pollen or other irritations out of my lungs . And I glove up to go to the store, doctor's appointments, Pharmacy and friends and families homes. I am mostly a home body now with my Huntington's Disease symptoms preventing me from driving. Most of the time I have disability resources for getting me to my doctors appointments. I got dizzy and had unexplained fevers so my pulmonary doctor admitted me for observation and IV Antibiotics and breathing treatments for 6 days. Afterwards I reciveved home care for two months. I was afraid of getting dizzy while driving. I haven't had a dizzy spell since April. I am dependent on a walker now because of my Huntington's unsteady gait… I am unashamed to wearing a bladder leak product and you should be too. As much as we cough its a necessity. Happy Halloween everyone!!!

REPLY

One of the major reasons I like implementing twice daily airway clearance protocols (I use 3% hypertonic saline via nebulizer) is that I get my coughing episodes over with in two “sittings”! The rest of my day and night are virtually coughless!

REPLY
@rits

So sorry that it might be Arikayce. I'm doing fairly well on it 3x a week with lots if bad shortness of breath for a couple of hours afterwards. Best of all, no pseudomonas or Klebsiella in the October sample. I hope you can use it and it works for you.

Jump to this post

Rits. When you say 3 times a week…do you mean every other day or 3 days on and 4 days off. Just curious… nurse and pharmacy told me I needed to take it every day. It is hard to fit it into my schedule with getting ready for work and all. I appreciate you feedback. Candy

REPLY
Please login or register to post a reply.