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.

LauraL856 | @laural856 | Jul 26, 2017
In reply to @laural856 "Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps...." + (show)
@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today - when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD - can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Wow! Thank you so much for compiling all of this info, Linda. This is so helpful. I will copy and paste and start a file for my mom. I'll encourage her to check out this forum - I think it would be extremely beneficial to her. I think it will do wonders for her to know that she is not alone. Thanks again!

Laura

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unicorn | @unicorn | Jul 26, 2017
In reply to @laural856 "Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps...." + (show)
@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today - when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD - can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Hi Laura: I had to take the pills 3 days a week. I spread them out during the day to go easier on my system. If I got nausea, i ate something and it always went away. The azithromyacin was the worst because it caused cramping and the runs. I lost a lot of weight.
Because of gerd, I did not eat much at night, tried to take the last pill by 5 pm. I lasted about a year and a half and then my system could no longer tolerate. I was so tired all the time, and I got every symptom they warned about, every one! Now I just use the nebulizer, followed by half hour of aerobics, supposed to help mucous clearance. Good luck, not sure what is worse, the disease or the pills! xo

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Bonniewhite56 | @bonniewhite56 | Jul 27, 2017
In reply to @laural856 "Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps...." + (show)
@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today - when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD - can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Question? Did you have Gerd before you started the meds or did they cause the Gerd ? Feel like I'm on verge of vomiting quite often. Is it azithromyacin, which I am on. Thanks

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Bonniewhite56 | @bonniewhite56 | Jul 27, 2017
In reply to @laural856 "Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps...." + (show)
@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today - when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD - can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Thanks for your detail of what and when you take the meds. So helpful. I don't know what I don't know. Thank u

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unicorn | @unicorn | Jul 27, 2017
In reply to @laural856 "Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps...." + (show)
@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today - when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD - can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Hi Bonnie: I think the pills may have caused the gerd, but I also discovered I had a very small hiatal hernia, which also causes it. But now off pills, and gerd almost gone. Have to be careful at night but I was never much of a dinner eater. if I do eat dinner I make sure I am moving for at least an hour after. Now I use motion and gravity to get rid of gerd, and it works, no pills at all, low fat. common sense diet. xo

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irene5 Irene Estes | @irene5 | Jul 27, 2017
In reply to @laural856 "Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps...." + (show)
@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today - when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD - can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Bonnie - This is Irene. I had GERD first - at least I think so, because there is always the possibility we didn't know we had MAC until we knew! The azithromycin is the substitute for clarithromycin which doctors say causes side effects. Perhaps you can switch. However, I suspect it is one of the other two.

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Bonniewhite56 | @bonniewhite56 | Jul 27, 2017
In reply to @laural856 "Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps...." + (show)
@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today - when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD - can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Thank you everyone. All your comments help in understanding all of this happening to my body. Bonnie

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 27, 2017
In reply to @laural856 "Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps...." + (show)
@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She's been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today - when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD - can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Hi Bonnie. Please feel free to continue to ask questions or add comments; it just might help another newcomer. - Hugs Terri M.

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Katherine, Alumni Mentor | @katemn | Jul 27, 2017

Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that I would like to resign effective immediately as Volunteer Mentor of the " MAC & Bronchiectasis Mayo Connect". I feel @windwalker Terri is working very hard currently as well as all the wonderful members jumping in to help her keep the Forum alive and well.

I want to thank All Members for a wonderful experience .. it has been one of the most rewarding volunteer efforts of my life. I received MUCH more than I ever gave. I feel very comfortable departing as any Newcomer has been given instructions in https://connect.mayoclinic.org/discussion/file-cabinet-information-from-katherine/

to find any knowledge/wisdom that I may have been able to impart while I was the Volunteer Mentor. As new information becomes available .. Terri and the others will add it to the Forum. I have every confidence that the MAC & Bronchiectasis Mayo Connect will be alive and well just as long as it is needed!

Farewell to all .. thank you for the opportunity to serve you. I am sending Big Hugs and positive energy! Katherine

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10 replies
lindam272 | @lindam272 | Jul 27, 2017

Katherine, You will be in my prayers. Thanks for the helpful tip here. That is invaluable in finding the information to help others. You have been the most remarkable mentor ever and we will do our best to follow in your footsteps offering encouragement to others. Blessings, Linda

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