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.

Suzie2017 | @suzie2017 | May 26, 2018
In reply to @suzie2017 "I took my husband to the Infectious Disease Doctor yesterday. He said there is no way..." + (show)
@suzie2017

I took my husband to the Infectious Disease Doctor yesterday. He said there is no way to correct his collapsed left lung because it was caused by excessive secretions. He said the secretions will continue. He is holding off on prescribing the MAC treatment until he gets the report from Colorado on the secretions that were extracted during the bronchoscopy. One report has come back already showing he has pseudonymous again. He is now on Cippro and the ID Doctor wants to wait until the Cippro is gone plus 7 days before he begins the treatment. He also said he wants to see all of the medicine bottles (there are many) so he can do a good analysis to make sure the MAC treatment will not interfere with his current regiment. My husband was fully dressed and weighed in at 115. He lost 3 pounds in 2 weeks. He is very thin and weak.

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I have started preparing him mid-morning, mid afternoon and evening snacks. It is still very surprising, but he eats very well. I search for snacks on Pinterest and other sites but seeing a dietician is also a very good idea. Thank you.

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Jennifer | @megan123 | May 26, 2018
In reply to @gaelawree "Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I..." + (show)
@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

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So true...

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 26, 2018
In reply to @gaelawree "Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I..." + (show)
@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

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@heathert, You are so very welcome. I appreciate that you (and others) are regulars on here. You ALL are part the success here that makes this a great community. You all are so good about catching newcomers that I miss and add good input with the information. I keep hoping that our conversations change to NEW therapies that work, or I AM CURED forever!! I pray that stem cell therapy gets to the point where we can reverse the damage of bronchiectasis. I am thinking of going to the World NTM conference in D.C. again this July to see if any new info is out there. -Terri

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 26, 2018
In reply to @lauriefrancis "@nick52 @windwalker I just visited my Mom. We talked about milk thistle. I asked when she..." + (show)
@lauriefrancis

@nick52 @windwalker I just visited my Mom. We talked about milk thistle. I asked when she noticed the bloating in her stomach. My guess is about 3 years ago. But her gaĺl bladder surgery was 7 yrs ago.
She has also had other surgery in her abdominal area over the years. So how long after surgery can a person develop and adhesion? And what is the treatment? What is the diagnostic protocol?
Also re milk thistle what dose should be administered?
I told my Mom you're praying for her. We are very grateful.

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@lauriefrancis Hi there. Prayers for Nina are still on. Your family is never far from my thoughts. -Terri

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heathert | @heathert | May 26, 2018
In reply to @gaelawree "Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I..." + (show)
@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

Jump to this post

@windwalker Oh I AM CURED FOREVER would be wonderful as we would all be cured on here, hope I see the day soon! Let us know how the NTM confrence in D.C. goes, fingers crossed.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 26, 2018
In reply to @suzie2017 "I took my husband to the Infectious Disease Doctor yesterday. He said there is no way..." + (show)
@suzie2017

I took my husband to the Infectious Disease Doctor yesterday. He said there is no way to correct his collapsed left lung because it was caused by excessive secretions. He said the secretions will continue. He is holding off on prescribing the MAC treatment until he gets the report from Colorado on the secretions that were extracted during the bronchoscopy. One report has come back already showing he has pseudonymous again. He is now on Cippro and the ID Doctor wants to wait until the Cippro is gone plus 7 days before he begins the treatment. He also said he wants to see all of the medicine bottles (there are many) so he can do a good analysis to make sure the MAC treatment will not interfere with his current regiment. My husband was fully dressed and weighed in at 115. He lost 3 pounds in 2 weeks. He is very thin and weak.

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@suzie2017 Hi Suzie. If your husband goes into pulmonary rehab ,a nutritionist comes with it. You can add ice-cream to powdered protein shakes to pack on some calories. Add mayonnaise or sour cream to mashed potatoes and cheese on top! People with breathing deficits require 10 times more calories as healthy people. We burn more just trying to breathe. (coughing a lot will also burn up your calories) We have to fatten your man up!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 26, 2018

@flib Hi there! You already are nebulizing sodium chloride. Here is your post from April 24: " I'm eighty-one. I use a nebulizer with a saline solution my doctor prescribed. It really helps. I only did one antibiotic for less than half a year and loss hearing as a result. Amazon has an easy to use nebulizer, Light to hold in the hand and it's quiet. It's an ultra sonic not a compressor. It cost about 26 dollars. I'm also on oxygen at night. A pain in the neck but I'm use to it now and it does make a difference. I've had mac and bronc since 2010 and I am still functioning. I drive, run errands, visit run my own life. ." NOTE: saline and sodium chloride are the same thing. It is a salt solution. This solution is beneficial because it thins the mucous making it easier to get up, plus it makes it inhospitable to bacteria. You probably grew up gargling warm salt water for a sore throat and had a cold coming on. By doing so, it was soothing and killed germs. It is the same concept for your lungs. I hope you are continuing with using it. How are you doing?

REPLY
Suzie2017 | @suzie2017 | May 26, 2018
In reply to @suzie2017 "I took my husband to the Infectious Disease Doctor yesterday. He said there is no way..." + (show)
@suzie2017

I took my husband to the Infectious Disease Doctor yesterday. He said there is no way to correct his collapsed left lung because it was caused by excessive secretions. He said the secretions will continue. He is holding off on prescribing the MAC treatment until he gets the report from Colorado on the secretions that were extracted during the bronchoscopy. One report has come back already showing he has pseudonymous again. He is now on Cippro and the ID Doctor wants to wait until the Cippro is gone plus 7 days before he begins the treatment. He also said he wants to see all of the medicine bottles (there are many) so he can do a good analysis to make sure the MAC treatment will not interfere with his current regiment. My husband was fully dressed and weighed in at 115. He lost 3 pounds in 2 weeks. He is very thin and weak.

Jump to this post

My husband has been in pulmonary/cardiac rehab for about 6 months and no one has said anything about a nutrionist. I really like that idea. I have been loading him up with calories. Last night we had chili with sour cream and cheese and also Texas Toast. He has a dish of ice cream every night. He eats really well but the pounds keep coming off. He is doing well over the weekend so far. Our son came in from Colorado to surprise him. Thank you for the good tips. Hope you are doing well this weekend also.

REPLY
Flib | @flib | May 26, 2018

Thank you so much. It takes a while to master the vocabulary.

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13 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 26, 2018
In reply to @flib "Thank you so much. It takes a while to master the vocabulary." + (show)
@flib

Thank you so much. It takes a while to master the vocabulary.

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@flib It Does. So, are you still nebulizing your saline? Are you doing alright?

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