(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

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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@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

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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@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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@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.

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@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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@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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@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.

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@flib It will be hard to put on weight as long as there is active infection going on. When my weight was rapidly falling off of me, I drank dairy- free powdered protein shakes. I would add frozen blueberries to it and put in in my Ninja blender. I would also add mayonaise, sour cream and butter to mashed potatoes to add calories. Eat many snacks. If you are totally animal product free, you will have to Google some ideas.

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Hello All..I have come across an excellent article from National Jewish Health on how to reduce exposure to Non Tuburculous Mycobacterium. Talks about no humidifiers, no refrigerator door water, raising hot water heater temperatures…etc. Very instructive of ways to avoid this bacteria and worth a read. https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx

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@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.

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Thanks Terri. Today I drank almost two shakes, thought I'd burst. Honestly, I could eat a lettuce leaf and feel full. I'll have to see if I can find some science as to why so much weight is lost with an active infection.

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@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.

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@flib Hi Flib….Dense foods like avocados. Lately when I am lazy I mix up "Garden of Life" Raw Protein Vanilla powder with a little cashew milk and tiny bit of banana in the blender. Great source of protein. Load up on Quinoa with sauteed veggies with olive oil. I like to start my day with Steel cut oats with a nut based milk, some frozen blueberries or fresh fruit and some crushed nuts on top. Beans and sunflower seeds are great toppers for your salads. When I get real lazy I pop in an Amy's vegan meal…non gmo and streamlined for any allergy or ethical preferences. Bon Appetite!! Go for the Dense Foods!! Oh…snacks of sliced apples (organic) with almond butter.

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@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.

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Thanks Nick. I'll order the milk thistle now and I'll try the tea.

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@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.

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@flib From what I have read, for some reason, mac causes malabsorbtion.

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@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.

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@alleycatkate, Thanks for stepping up with these healthy suggestions!

Liked by alleycatkate

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@alleycatkate

Hello All..I have come across an excellent article from National Jewish Health on how to reduce exposure to Non Tuburculous Mycobacterium. Talks about no humidifiers, no refrigerator door water, raising hot water heater temperatures…etc. Very instructive of ways to avoid this bacteria and worth a read. https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx

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@alleycatkate There is a list posted on the Discussoon Board about all of the ways to avoid catching mac and avoiding reinfection. I feel like people are not visiting the Discussion board where there is a wealth of info. But, on the other hand, this post is a great intro for newcomers, & reminder for us 'old-timers'. I am delighted, Kate, that you are digging for info.!

Liked by claudiabrende

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@windwalker …Thank you…I have never seen the Discussion Board…I will check it out!

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