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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

sallykuni | @sallykuni | Oct 17, 2019

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

REPLY
1 reply
auntnanny | @auntnanny | Oct 17, 2019

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

REPLY
boomerexpert | @boomerexpert | Oct 17, 2019
In reply to @sallykuni "I just wanted to post an update for the records. I was sick for about a..." + (show)
@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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judyhodgern | @judyhodgern | Oct 17, 2019
In reply to @fmenglannd3 "Get me out of your mailing list!" + (show)
@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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alleycatkate | @alleycatkate | Oct 18, 2019
In reply to @anniepie "@alleycatkate No problem Kate. Actually I already have a really good diet with all the things..." + (show)
@anniepie

@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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Thanks @anniepie. I hope you can find a good solution.

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1 reply
america | @america | Oct 18, 2019
In reply to @windwalker "@america Yay!! So glad to hear that! You ARE a shining star! Stay well my friend...." + (show)
@windwalker

@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!

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Thanks Terri!! It’s a great feeling to be well again! Mac is negative and pseudomonas also! My new doctor is great and I’m just enjoying this moment. It’s amazing how life Could be at times so sick when it feels like you never going to get better. But hope and pressing on is what helps and never giving up! I don’t know what tomorrow may bring but for the moment I’m just in a place where I’m content and happy to feel alive again. After being in the hospital for a week with pneumonia and it was scary! I’m so blessed to be well and tested negative!! I do still have Bronchiectasis but it’s really not slowing me down. Dr Johnson has me on some daily meds and it has been working great. So be encouraged everyone there is HOPE!!!! Hugs to Terri who has been a my motivator!!! Hugs to all Rita

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3 replies
kathyhg | @kathyhg | Oct 18, 2019

Thanks for the positive message! I can relate to feeling hopeless (and overwhelmed). I’ve relied on this forum for information since diagnosed with Mac in early 2019.

As far as my experience goes, I was on the Big 3 for 6 months, until I developed side effects. I saw a wonderful Mac specialist and was started on a nebulizer with lung clearing exercises and the Aerobika every morning and I’m off medication for now. I was positive for Mac at my last visit but finding this helpful in managing symptoms for now. I’m sure I’ll be back on medications one day but trying to keep myself well as long as I can.

Thanks again!

REPLY
heathert | @heathert | Oct 18, 2019
In reply to @america "Thanks Terri!! It’s a great feeling to be well again! Mac is negative and pseudomonas also!..." + (show)
@america

Thanks Terri!! It’s a great feeling to be well again! Mac is negative and pseudomonas also! My new doctor is great and I’m just enjoying this moment. It’s amazing how life Could be at times so sick when it feels like you never going to get better. But hope and pressing on is what helps and never giving up! I don’t know what tomorrow may bring but for the moment I’m just in a place where I’m content and happy to feel alive again. After being in the hospital for a week with pneumonia and it was scary! I’m so blessed to be well and tested negative!! I do still have Bronchiectasis but it’s really not slowing me down. Dr Johnson has me on some daily meds and it has been working great. So be encouraged everyone there is HOPE!!!! Hugs to Terri who has been a my motivator!!! Hugs to all Rita

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@america that is fantastic news!! I am in the same boat after around 5 years, stop the meds in a month and a half, scary but exciting!

REPLY
1 reply
sounder27 | @sounder27 | Oct 18, 2019
In reply to @america "Thanks Terri!! It’s a great feeling to be well again! Mac is negative and pseudomonas also!..." + (show)
@america

Thanks Terri!! It’s a great feeling to be well again! Mac is negative and pseudomonas also! My new doctor is great and I’m just enjoying this moment. It’s amazing how life Could be at times so sick when it feels like you never going to get better. But hope and pressing on is what helps and never giving up! I don’t know what tomorrow may bring but for the moment I’m just in a place where I’m content and happy to feel alive again. After being in the hospital for a week with pneumonia and it was scary! I’m so blessed to be well and tested negative!! I do still have Bronchiectasis but it’s really not slowing me down. Dr Johnson has me on some daily meds and it has been working great. So be encouraged everyone there is HOPE!!!! Hugs to Terri who has been a my motivator!!! Hugs to all Rita

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America. So wonderful that you are feeling great. I am cheering for you!! It’s so good to hear such positive news. Candy

REPLY
anniepie | @anniepie | Oct 19, 2019
In reply to @america "Thanks Terri!! It’s a great feeling to be well again! Mac is negative and pseudomonas also!..." + (show)
@america

Thanks Terri!! It’s a great feeling to be well again! Mac is negative and pseudomonas also! My new doctor is great and I’m just enjoying this moment. It’s amazing how life Could be at times so sick when it feels like you never going to get better. But hope and pressing on is what helps and never giving up! I don’t know what tomorrow may bring but for the moment I’m just in a place where I’m content and happy to feel alive again. After being in the hospital for a week with pneumonia and it was scary! I’m so blessed to be well and tested negative!! I do still have Bronchiectasis but it’s really not slowing me down. Dr Johnson has me on some daily meds and it has been working great. So be encouraged everyone there is HOPE!!!! Hugs to Terri who has been a my motivator!!! Hugs to all Rita

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Hi Rita @america. So glad to hear all of this news. Please stay in touch with all of us

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