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.

beatitnow | @beatitnow | 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

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I am just curious...how long has she been on the meds? I have to start these meds on Tuesday. Thank you for your information. And, I really hope your mom starts to feel better and you all get some answers.

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lindam272 | @lindam272 | Mar 9, 2017
In reply to @katemn "Dear All, As I have said to Colleen .. it is much easier for me to..." + (show)
@katemn

Dear All,
As I have said to Colleen .. it is much easier for me to give than to receive .. as such I am oh so aware of the caring and support you all feel for me .. but truthfully it sometimes makes my journey more difficult for me if your support is more than just a silent hand over heart message of positive energy .. know that I will receive that positive energy and become stronger for it .. energized by my dear Forum. That is what I need from you right now .. not the need for me to return any actual posts of support and caring .. I know you care without your posts.

That said I have some news to convey. I have been very ill since February 5. At times too ill to reply to your posts .. and as Colleen told me .. the Universe knew .. and there were NO POSTS during that early period! It was too funny! Finally toward the end of that silent period one unnamed member said .. to paraphrase .. "Why, with no posts for so long .. I thought everyone had been cured of MAC!" So for those 9 days it was pretty rough. Since then, my only activity has been to answer my Mayo Connect. Your posts have been my "happy place" .. even though many of you are going through tough times .. we all remind ourselves of "the journey" .. it's downs .. BUT it's many UPS!

I finally got an appointment at Mayo Clinic in Rochester for March 7 due to a cancellation.

So the news:
Yesterday was a tough day. Today is a better day. Yesterday I saw Dr. Timothy Aksamit at Mayo Clinic who I have a world of confidence in. The news was not great .. can always be worse .. good news was that my MAC has NOT returned! BUT it turns out that as a result of my compromised immune system and my Bronchiectasis .. I have developed a different bacteria .. Like Mac .. it is not curable .. only treatable. .. called Pseudomonas Aeruginosa. Several of our MAC & Bronchiectasis members have the same bacteria.

Dr. Aksamit is going to first try 500 mg Cipro 2x a day for 28 days .. which I have heard referred to as a "cannon" antibiotic .. hopefully that will "stabilize" this new bacteria as my MAC has been stabilized since May 2014.

If the Cipro does not work .. then I go on a 28 day on 28 day off cycle of an inhaled antibiotic called Tobramycin. Obviously I am hoping the Cipro works!

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Katherine, Sorry to add one more, but it is good for you to learn to receive anyway! So sorry to hear that you are sick. You are in my prayers for complete healing - pronto!! You have blessed me and others beyond measure with this discussion group and we need you! That being said, take care of you first. We aren't going anywhere!

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Kay Strand | @kaystrand | 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

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From Kay S.
Hi all, it's been awhile. I'm wondering what's wrong w Kate? There's so much on this blog I can't find anything except she's sick? Please someone let us know how she's doing?
Also,to ilg4pe
Your mom should try to hang in there. I had all those side effects but after a full month was much better. I started them slowly and one at a time and I was still sick. I've had 2 negative cultures and am going to meds 3 days per week as my cat scan is greatly improved. Fingers crossed I'll be done w drugs in August. Then hoping I stay clear-
The article on survival rates w Bronchiacstasis really was a downer. I guess we need info but that article was not about MAC and if I'd known that it was something I not about MAC I would not have read. I just worry!

Anyway, sharing some thoughts and being honest. All take care.

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ilgrp4e | @ilgrp4e | Mar 9, 2017
In reply to @boomerexpert "I'd been undergoing acupuncture for a few months...wasn't sure if it was helping but I was..." + (show)
@boomerexpert

I'd been undergoing acupuncture for a few months...wasn't sure if it was helping but I was symptom free, after all.... After 3 weeks, I'm feeling worse so it was helping more than I understood. I have a highly skilled practitioner who is handling both my lung issues and my RA... Find someone exceptional and you'll feel better. Practitioner's proficiency is the key.

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Can you ask the doctor if he knows any in Chicago? My mom has Ra and bronchiactisis along with the myobacterium avium. She's getting all the bad side effects and not sure what's going to happen

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ilgrp4e | @ilgrp4e | 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

So there is hope. 😉

REPLY
ilgrp4e | @ilgrp4e | 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

Almost 2 weeks. So she started with the first pills the first few days then the second then the 3rd. She did this to see which ones would give her side effects. Nurses said it was OK to do that. Actually it's smart so that the Dr knows which oness.

REPLY
beatitnow | @beatitnow | 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

Kay S, I have to start taking the meds this Tuesday. So, you were sick for one month, but then you got better after the month? I'm just curious as to how to handle this if I get sick. I hope you stay clear also!! And, I agree that article was depressing, but I think we need to learn to "go with" the more positive stuff we hear. Like how to take care of our body to continue to help our lungs be strong, along with a positive attitude that God will get us through, and live each day and try not to let this condition "rule" us. We can do this! 🙂

REPLY
terryb1 | @128128terry11t | 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

Had side effects. Then Denver and my pulmonologist took me off all meds to make sure nothing else was going on. My pulmonologist suggested that I re-start the meds one at a time. I went on first one for two weeks (pulmonologist suggested that it be for two weeks); then a second for two weeks; and then a third for two weeks. New at this but hopefully this is helpful. I also decided that it was time to go on an anti-anxiety pill to help with the "nervousness" and all that it entails. Went to a psychiatrist and am on lorazepam (anywhere from .5 to 1 mg). That is extremely helpful. No shame in that at all; proud of myself for admitting that I needed that kind of assistance. Wishing you better days.

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beatitnow | @beatitnow | Mar 9, 2017
In reply to @katemn "Sputum Test Results Posted by @windwalker in MAC & Bronchiectasis, 18 hours ago Hi ALL! Good..." + (show)
@katemn

Sputum Test Results
Posted by @windwalker in MAC & Bronchiectasis, 18 hours ago
Hi ALL! Good news to share. Got my last sputum test results yesterday. All Clear! No organisms found!! Yay!!! That is especially great news to me because I tend to get three different kinds. MAC, pseudomonas, and aspergillums

@windwalker Terri, I am posting this on the Main Forum .. BECAUSE I want you to get ALL the congratulations you so well deserve!! I am SO happy for you! YEAH!! Way to go girl! Big Hugs to you! Katherine

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Terri, I am very excited for you....I hope they remain clear your whole life!! Question...I have to start the big 3 this Tuesday (yes, I am scared)...1) did you have side effects from the meds? 2) how many clear sputum samples does your doctor want in order to go off the drugs?

REPLY
beatitnow | @beatitnow | 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

128128terry....How are you doing on the medication? How long have you been on?

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