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.

terryb1 | @128128terry11t | Mar 9, 2017

Just started the last antibiotic of the three and so far, okay. Fingers crossed; too soon to know anything for sure. Will keep all in the loop.

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4 replies
heathert | @heathert | Mar 9, 2017
In reply to @ilgrp4e "So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds..." + (show)
@ilgrp4e

So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds for her rheumatoid arthritis. She just started taking the antibiotics for the myobacterium but is getting fever up to 103, nausea, diarhea which is making her incontinent, uncontrollable chills, sweats, rapid heart beat and shortness of breath. All side effects since she started taking pills. Had to go to er and the doctors said nothing's wrong w her. I'm sure this are from the meds. Waiting on her infectious disease doctor to call her back. Has anyone had to stop the antibiotics from having these side effects? Is there other kind to help treat? I'm freaking out for my poor mom. I need all the help or advice I can have. We are in Chicago so if anyone knows of anything please tell.
Thanks

Jump to this post

@kaystrand I have read Kathryn has Pseud

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heathert | @heathert | Mar 9, 2017
In reply to @tdrell "Katherine....we all are sending our positive vibes that you will feel better soon. Did i recall..." + (show)
@tdrell

Katherine....we all are sending our positive vibes that you will feel better soon. Did i recall you saying you sat near someone ill while on a trip? Terrid

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@katemn, Hope you are feeling much better soon, you have done so much to help all of us, wish we could help you!

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heathert | @heathert | Mar 9, 2017
In reply to @ilgrp4e "So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds..." + (show)
@ilgrp4e

So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds for her rheumatoid arthritis. She just started taking the antibiotics for the myobacterium but is getting fever up to 103, nausea, diarhea which is making her incontinent, uncontrollable chills, sweats, rapid heart beat and shortness of breath. All side effects since she started taking pills. Had to go to er and the doctors said nothing's wrong w her. I'm sure this are from the meds. Waiting on her infectious disease doctor to call her back. Has anyone had to stop the antibiotics from having these side effects? Is there other kind to help treat? I'm freaking out for my poor mom. I need all the help or advice I can have. We are in Chicago so if anyone knows of anything please tell.
Thanks

Jump to this post

now read Kathryn is clear of bugs, yay!

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Katherine, Alumni Mentor | @katemn | Mar 9, 2017
In reply to @katemn "Dear All, Just read a really interesting article on Bronchiectasis .. not saying it was fun..." + (show)

@hopeful33250, Theresa thank you SO much for jumping in on this .. our group just didn't have a clue what this meant .. again .. many thanks! Katherine

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beatitnow | @beatitnow | Mar 9, 2017
In reply to @128128terry11t "Just started the last antibiotic of the three and so far, okay. Fingers crossed; too soon..." + (show)
@128128terry11t

Just started the last antibiotic of the three and so far, okay. Fingers crossed; too soon to know anything for sure. Will keep all in the loop.

Jump to this post

128128terry....Is your name Terry, so I can just say that? 🙂 What order did you start the antibiotics, and did you start them each one week apart? Did your doctor or nurse tell you how long it might be if you are going to have "side effects" to the medicine? Thank you!!! My name is Amy, by the way. 🙂

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jillnc | @jillnc | Mar 9, 2017

Hi Amy. I haven't commented yet, but I'm on the 3 meds for MAC. Hoping to be off in August if all goes well. My ID dr said I should be on meds for 12 months from a clear culture. I started my meds all at once. I was on a low dose of predisone for something else and as I was weened off that I developed a itchy rash. Took me off 2 of the three and introduced 1 at a time and sure enougg ethambutol was the culprit. I was desentized to the drug and am now back on it. First day I took the 3 meds I felt nausea because I took a couple together. Dr recommended spreading them out so next day I did and all was better. I also took a probiotic to help with any loose stools which I still had a little bit, but dr told me to give it a couple weeks for body to adjust. May will be 1 yr I've been on meds. Also because of ethambutol I went mo thly to an opthmologist to have eyes examined. So far ao good and he's not seeing me again till august. He said normally he doesn't see issues, but has seen 1 case of toxicity before from the ethambutol. My ID drs were the ones suggest I get monthly eye checks. You will do fine and if not there are always different options. You always have options (might not like them) and EVERYTHING is ALWAYS temporary. Good luck.

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cila | @cila | Mar 9, 2017
In reply to @ilgrp4e "So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds..." + (show)
@ilgrp4e

So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds for her rheumatoid arthritis. She just started taking the antibiotics for the myobacterium but is getting fever up to 103, nausea, diarhea which is making her incontinent, uncontrollable chills, sweats, rapid heart beat and shortness of breath. All side effects since she started taking pills. Had to go to er and the doctors said nothing's wrong w her. I'm sure this are from the meds. Waiting on her infectious disease doctor to call her back. Has anyone had to stop the antibiotics from having these side effects? Is there other kind to help treat? I'm freaking out for my poor mom. I need all the help or advice I can have. We are in Chicago so if anyone knows of anything please tell.
Thanks

Jump to this post

I remember when i start my meds I got very sick, cramping on my stomach, shortness of breath, everything that can go wrong. I almost stop taking them but tried different time taking them and my body got used to it now. I'm on meds now for 9 months and sometimes I still fell that side effect once in a while but not like the first time I started. It will get better and I will pray for your Mom and everyone in this forum. God Bless you all ! We need to look at the bright side and keep our body healthy. Hugs to all of you! Cila

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cila | @cila | Mar 9, 2017
In reply to @tdrell "Katherine....we all are sending our positive vibes that you will feel better soon. Did i recall..." + (show)
@tdrell

Katherine....we all are sending our positive vibes that you will feel better soon. Did i recall you saying you sat near someone ill while on a trip? Terrid

Jump to this post

Hi Katherine, I'm sending my love and prayer for you to get better soon.

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lindam272 | @lindam272 | Mar 9, 2017

Hi, Amy and all, I started my meds mid-December, taking Azithromycin, Ethambutol and Rifampin every day. I started each about 10 days apart and take them at different times of the day. I had to shift them around a couple of times but finally found a good schedule that works for me: Rifampin as soon as I wake up 6;30-7 (on empty stomach) along with a probiotic, then Azithromycin at 9:00 a.m. (I was taking an hour earlier but was causing acid reflux), then Ethambutol at noon. I now take my vitamins with dinner since they have to be 4 hours away from my other meds. I have my eyes checked every couple of months and have an app on my phone, on the advice of my opthamalogist, so I can check my vision weekly using the app. I also have my hearing checked every few months. The Azithromycin can effect hearing and the Ethambutol can effect your eye sight so it's important to monitor them while on the meds. I am one of the "lucky" ones who didn't have many bad side effects. The first few days on each of the meds were a little sketchy with cramping and just generally not feeling well, but my body adjusted quickly. The Rifampin is the worst for me so I have some mornings when I just want to lay down for a few minutes and then will feel better. I also found myself about 6 weeks into the Rifampin, feeling a generally apathy about life and realized it was a side effect of the drug so had a stern talking with myself and pulled myself out of it. Just hang in there. I pray that you don't have any serious side effects. Just know this group is here for you. I'm not sure where I would have been without them! Blessings, Linda

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