(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

@america

Hi Terri and everyone! It’s been so long since I’ve been here. But I just want to say that I am doing great!!! I have been so much better for the last 2 months!!! I hope you all are doing good or getting better every day. Hugs to all Rita.

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@america Great to hear from you Rita. Good news — hugs to you too

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@alleycatkate

@anniepie ..Hi Annie…you may hate my suggestion but it is how I control my high cholesterol without any medication…It brings my very high numbers down to just borderline. Cut out all animal products, all dairy products…all fat except a good 1st press extra virgin olive oil. (hard to find a real one but California Olive Ranch extra virgin is one at Walmart and Costco's own brand, Kirkland extra virgin olive oil is another…cold pressed) If you can eliminate all of those foods with processed oils/butters/fats and animal meat/fat, you should be able to bring your numbers down naturally. It may seem drastic especially if you have a typical American diet…but you will be healthier too. My x endocrinologist fired me cause I refused statins. Not only did I control my cholesterol levels naturally, but my (Graves disease) hyperthyroidism also resolved itself. So…haha no need for my pushy Doctor!! 🙂 Good luck …I hope you can get it worked out. Kate

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@alleycatkate Thanks Kate — yes I haven't had a good/nice endocrinologist yet — laugh. Annie

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@anniepie Hi Annie…It occurs to me that my last message to you was probably not helpful…as it was a severe approach to reducing your cholesterol levels naturally…What if you gave up the red meat and milk products and incorporated the really good foods that lower cholesterol…like nuts, berries, dark chocolate, steel-cut oatmeal, whole grains, avocados…legumes and veggies and fatty fish like salmon, herring, tuna? I think you could get results like that. Sorry…I usually lean over forward or lean over backward with very little middle ground. Hope you are doing well. Kate

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@alleycatkate

@anniepie Hi Annie…It occurs to me that my last message to you was probably not helpful…as it was a severe approach to reducing your cholesterol levels naturally…What if you gave up the red meat and milk products and incorporated the really good foods that lower cholesterol…like nuts, berries, dark chocolate, steel-cut oatmeal, whole grains, avocados…legumes and veggies and fatty fish like salmon, herring, tuna? I think you could get results like that. Sorry…I usually lean over forward or lean over backward with very little middle ground. Hope you are doing well. Kate

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You may look into the keto diet because it does lower cholesterol naturally it sounds like a wild thing but if you read the book by Dr. Annette Bosworth MD. It’s very interesting. I am on it now since it is supposed to decrease inflammation. I feel more energetic too.

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@judyhodgern

You may look into the keto diet because it does lower cholesterol naturally it sounds like a wild thing but if you read the book by Dr. Annette Bosworth MD. It’s very interesting. I am on it now since it is supposed to decrease inflammation. I feel more energetic too.

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Get me out of your mailing list!

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@america

Hi Terri and everyone! It’s been so long since I’ve been here. But I just want to say that I am doing great!!! I have been so much better for the last 2 months!!! I hope you all are doing good or getting better every day. Hugs to all Rita.

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Wonderful news!!

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@fmenglannd3

Get me out of your mailing list!

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Hi @fmenglannd3
Currently you have selected to follow the MAC & Bronchiectasis and receive an email everytime a new post is made. You can change your email notification settings to no longer receive emails. See instructions here: https://connect.mayoclinic.org/get-started-on-connect/

If you need further assistance with this, please email me using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

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@alleycatkate

@anniepie Hi Annie…It occurs to me that my last message to you was probably not helpful…as it was a severe approach to reducing your cholesterol levels naturally…What if you gave up the red meat and milk products and incorporated the really good foods that lower cholesterol…like nuts, berries, dark chocolate, steel-cut oatmeal, whole grains, avocados…legumes and veggies and fatty fish like salmon, herring, tuna? I think you could get results like that. Sorry…I usually lean over forward or lean over backward with very little middle ground. Hope you are doing well. Kate

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@alleycatkate No problem Kate. Actually I already have a really good diet with all the things you say and have done for many years. Unfortunately I still had the high cholesterol. It seems to be a problem with Hashimotos Hypothyroidism. It was under control with treatment for many years until I started the Rifampin. Now it's very high and it's risky to have for a long period of time. If I find out about any other options from a cardiac review I will let people know. Hugs, Annie

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@america

Hi Terri and everyone! It’s been so long since I’ve been here. But I just want to say that I am doing great!!! I have been so much better for the last 2 months!!! I hope you all are doing good or getting better every day. Hugs to all Rita.

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@america Yay!! So glad to hear that! You ARE a shining star! Stay well my friend. You are one more feather in Mayo Clinic's cap. Big hug!

Liked by anniepie

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@lorifilipek

@windwalker I've been holding steady without needing antibiotics. I'm exercising most every day and working in the yard in Michigan as my "meditation." The dirt doesnt' seem to be bothering me (yet). How are you? Are you still bicycling?

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@loribulger Hi Lori. Sorry for this delay, this post got by me somehow. I have not been bicycling due to extreme heat and humidity. I will resume as soon as the weather improves. We are house sitting the whole month of November in Palmetto Bluff S.C. It is a gorgeous area with beautiful homes and it is a nature conservancy w/miles of bike trails It is the ideal place to ride. How are you? Have you been able to work on your landscaping?

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@windwalker Hi Terri. (I'm guessing you meant me.) I've seen pictures of Plametto Bluff (the 2018 HGTV Smart Home was in that subdivision). It looks like heaven on earth! Hope you have lots of fun there. I've been in a bit of a lull with the landscaping. We've been getting lots of rain.

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I just wanted to post an update for the records. I was sick for about a year (beginning in 2017); before I was finally diagnosed with mycobacterium avium in 2018. I was/am being treated at MD Anderson Cancer Center in Houston because when the first few CT Scans and PET scan of my lungs showed so many lesions and tumors – everyone feared cancer first. MD Anderson worked very closely with Mayo Clinic to come up with the final diagnosis after a brochoscopy and samples were tested. I was immediately put on breathing treatments with a nebulizer twice a day; and of course – the "big 3" antibiotic regimen 3 times per week.
My last few sets of scans have shown no new infection areas and I have not had a negative sputum test in over 1 year! My doctor is going to take me off of the "big 3" in one more month!!! WOO-HOO!!! And I can lower my breathing treatments from twice a day to once a day!!!!
I just wanted everyone out there to know that there is hope for beating this horrible infection/disease!!! Stick with the program and be very diligent!
Before this happened, I was a very, very active and healthy 58 year old! I can't wait to get back to my regular work-outs and start to get my life back to normal! Keep up the good work everyone!
Sally

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sallykuni — thank you for posting such a positive note. I think we sometimes feel there is no end to it and perhaps you are showing us bright days

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@sallykuni

I just wanted to post an update for the records. I was sick for about a year (beginning in 2017); before I was finally diagnosed with mycobacterium avium in 2018. I was/am being treated at MD Anderson Cancer Center in Houston because when the first few CT Scans and PET scan of my lungs showed so many lesions and tumors – everyone feared cancer first. MD Anderson worked very closely with Mayo Clinic to come up with the final diagnosis after a brochoscopy and samples were tested. I was immediately put on breathing treatments with a nebulizer twice a day; and of course – the "big 3" antibiotic regimen 3 times per week.
My last few sets of scans have shown no new infection areas and I have not had a negative sputum test in over 1 year! My doctor is going to take me off of the "big 3" in one more month!!! WOO-HOO!!! And I can lower my breathing treatments from twice a day to once a day!!!!
I just wanted everyone out there to know that there is hope for beating this horrible infection/disease!!! Stick with the program and be very diligent!
Before this happened, I was a very, very active and healthy 58 year old! I can't wait to get back to my regular work-outs and start to get my life back to normal! Keep up the good work everyone!
Sally

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what a grueling few years, @sallykuni… congrats on your on-going recovery!

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@fmenglannd3

Get me out of your mailing list!

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Kind of mean of fremglannd3. Just reporting what I read.

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