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.

boomerexpert | @boomerexpert | Jul 9, 2018
In reply to @jkiemen "@america You came to the right place. We all understand about the disease and all have..." + (show)
@jkiemen

@america You came to the right place. We all understand about the disease and all have similar but yet different stories and severity of illness. It impacts your physical and emotional health. Some of us are on the Medications, some tolerate and others do not. Tell us more about yourself. How did you discover it, how advanced was it, what meds where you on?. What are you doing for treatment now?

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@windwalker @unicorn Terri, appreciate your determination but that's a veeeewy long drive...anyone else live closer to DC?

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boomerexpert | @boomerexpert | Jul 9, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@jkiemen I advise avoiding all dairy...creates inflammation and phlegm...there's nut and soy mild alternative products that are yummy

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 9, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@america Weight loss is one of the signs of active mac or pseudomonas infection. I lost 26 lbs due to pseudomonas. That was in 2015. I started on tobramycin in the spring of 2016. The weight has been returning (+14 lbs). I am trying not to gain all of it back; I like where it is now. Weight gain or loss is a great indicator for your health. I hope you can get yourself to where you are gaining also.

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nick52 | @nick52 | Jul 9, 2018
In reply to @jkiemen "@america You came to the right place. We all understand about the disease and all have..." + (show)
@jkiemen

@america You came to the right place. We all understand about the disease and all have similar but yet different stories and severity of illness. It impacts your physical and emotional health. Some of us are on the Medications, some tolerate and others do not. Tell us more about yourself. How did you discover it, how advanced was it, what meds where you on?. What are you doing for treatment now?

Jump to this post

@windwalker I wish I could spend more than 182 days in US but the US laws doesn’t allow me more than 182 days.  I would attend that conference.  Can you send me the link for the cilybus.  I hope one of us will attend. Nick

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Flib | @flib | Jul 9, 2018

Weight loss is one of my big concerns. I don't tolerate dairy well plus it increases mucus...so I just ignore people who tell me to drink milk shakes. I have very little appetite, do best with breakfast, so eating is more a chore than a pleasure. Any suggestions would be welcomed.

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14 replies
Suzie2017 | @suzie2017 | Jul 9, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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Weight loss also occurs with severe-end of stage COPD. My husband is down to 114. He has COPD, broncoactasis and MAC. Sometimes it is difficult to know what is causing the symptoms.

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Milagro103 | @milagro103 | Jul 10, 2018
In reply to @milagro103 "Has anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor..." + (show)
@milagro103

Has anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor have tested my husband they find no disease. The only thing they found was a slow growing bacteria mycobacterium ventiflavum. There is no treatment he is just on oxygen and Cellcept .6liters resting 8 walking 10 excercising. They gave him the TB meds but he became very ill. I wonder if a second opinion at the Mayo Clinic would help.

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thanks. We are the Mayo Clinic right now !

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Milagro103 | @milagro103 | Jul 10, 2018
In reply to @katemn "@milagro103, do you have a first name .. more personal. I googled "mycobacterium ventiflavum" .. what..." + (show)
@katemn

@milagro103, do you have a first name .. more personal. I googled "mycobacterium ventiflavum" .. what I came up with was "Mycobacterium lentiflavum" are you sure you have the correct spelling? If I was sitting in your shoes AND my spelling is correct .. I would do some reading on the below google search .. EDUCATE YOURSELF .. so you can become your husband's advocate! My husband has many health issues .. so I know all about the need to be a spousal health advocate! Get to researching .. then ABSOLUTELY if I was sitting in your shoes I would be looking for a second opinion. AFTER you have researched the below .. AND done some reading of the back pages of our back pages of this Main Forum .. why? BECAUSE ALL the mycobacterium strains share very similar issues .. journeys .. and you will learn a LOT! After you have done this .. please feel free to come back with any questions .. we have ALL been on this same journey .. we will walk this journey with you! Sending you a hug .. I know it is a tough time! Katherine
https://www.google.com/search?q=mycobacterium+ventiflavum&oq=mycobacterium+ventiflavum&aqs=chrome..69i57j0l5.886j0j4&sourceid=chrome&ie=UTF-8

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Thanks everyone, My name is Eva btw!,, We are at the Mayo Clinic right now I am so impressed with this group of providers. Katherine, it is the correct spelling and I have researched. That is why I was asking. The problem is they DO NOT know what the bacteria is and cannot characterize the type of ILD based on biopsies and a surgery where they took a pieces of each lobe of the worst lung and studied it layer by layer. I feel hopeful with this new doc at least she listened. I will let you all know what the results are.

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nick52 | @nick52 | Jul 10, 2018
In reply to @flib "Weight loss is one of my big concerns. I don't tolerate dairy well plus it increases..." + (show)
@flib

Weight loss is one of my big concerns. I don't tolerate dairy well plus it increases mucus...so I just ignore people who tell me to drink milk shakes. I have very little appetite, do best with breakfast, so eating is more a chore than a pleasure. Any suggestions would be welcomed.

Jump to this post

@flib that sound more like a congested liver.  You have nothing to lose trying the milk thistle from HÜbner or any liquid one.  Follow the portion on the bottle.  You can also drink dandelion tea after a meal. If your liver isn ‘t working well it is hard to

digest diary and bike stays in your stomach.  That is possible Flib!

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boomerexpert | @boomerexpert | Jul 10, 2018
In reply to @katemn "@milagro103, do you have a first name .. more personal. I googled "mycobacterium ventiflavum" .. what..." + (show)
@katemn

@milagro103, do you have a first name .. more personal. I googled "mycobacterium ventiflavum" .. what I came up with was "Mycobacterium lentiflavum" are you sure you have the correct spelling? If I was sitting in your shoes AND my spelling is correct .. I would do some reading on the below google search .. EDUCATE YOURSELF .. so you can become your husband's advocate! My husband has many health issues .. so I know all about the need to be a spousal health advocate! Get to researching .. then ABSOLUTELY if I was sitting in your shoes I would be looking for a second opinion. AFTER you have researched the below .. AND done some reading of the back pages of our back pages of this Main Forum .. why? BECAUSE ALL the mycobacterium strains share very similar issues .. journeys .. and you will learn a LOT! After you have done this .. please feel free to come back with any questions .. we have ALL been on this same journey .. we will walk this journey with you! Sending you a hug .. I know it is a tough time! Katherine
https://www.google.com/search?q=mycobacterium+ventiflavum&oq=mycobacterium+ventiflavum&aqs=chrome..69i57j0l5.886j0j4&sourceid=chrome&ie=UTF-8

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@milagro103 Eva...very glad you got to Mayo...they're very good and throrough

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