(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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

@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

Jump to this post

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

Liked by anniepie

REPLY
@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!

Jump to this post

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

REPLY

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
@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

Jump to this post

@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
@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

Jump to this post

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

REPLY
@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

Jump to this post

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

Liked by america

REPLY
@heathert

@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!

Jump to this post

@heathert Fastastic news for you too! Yes I know it must be a bit scary for the future — maybe you could try things like intermittent high vitamin D or other things to help protect you in future after tyhe meds stop.
You've been a wonderful help to me Heather. i hope you can stay in contact with us in future. Hugs and thanks from Annie

Liked by america

REPLY
@alleycatkate

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

Jump to this post

Thanks Kate @alleycatkate — I'm still getting more results from the cardiologist. Apparently there are other things that might help get the very high cholesterol down when the meds knock everything out — eg. antibody therapy, but it's expensive and hard to get. We'll see what happens in the next few weeks. Hugs, Annie

Liked by alleycatkate

REPLY
@anniepie

@heathert Fastastic news for you too! Yes I know it must be a bit scary for the future — maybe you could try things like intermittent high vitamin D or other things to help protect you in future after tyhe meds stop.
You've been a wonderful help to me Heather. i hope you can stay in contact with us in future. Hugs and thanks from Annie

Jump to this post

@anniepie Thank you so much. I will be trying some vitamins, I wish there was some sort of protocol to follow tho. I will definitely stay on mayo and help where I can. Hugs to you too Annie

REPLY
@anniepie

Thanks Kate @alleycatkate — I'm still getting more results from the cardiologist. Apparently there are other things that might help get the very high cholesterol down when the meds knock everything out — eg. antibody therapy, but it's expensive and hard to get. We'll see what happens in the next few weeks. Hugs, Annie

Jump to this post

@anniepie Good luck. I hope the cardiologist will be helpful to you. Please update us.
🤗 Kate

Liked by anniepie

REPLY
@anniepie

Thanks Kate @alleycatkate — I'm still getting more results from the cardiologist. Apparently there are other things that might help get the very high cholesterol down when the meds knock everything out — eg. antibody therapy, but it's expensive and hard to get. We'll see what happens in the next few weeks. Hugs, Annie

Jump to this post

What is the connection between the Big 3 and high cholesterol? I hadn’t heard of that.
Thanks,

REPLY

@kathyh The only connection I know of is the effects of both on the liver. One of the big three is of particular concern for the liver, and since most cholesterol meds increase liver enzymes, it can be problematic to take both. I was given the choice of being on cholesterol meds or off while on the Big 3. I chose off. (Irene5)

REPLY

Thanks!

REPLY
@kathyhg

What is the connection between the Big 3 and high cholesterol? I hadn’t heard of that.
Thanks,

Jump to this post

Hi Kathy @kathyhg. The Big 3 don't cause high cholesterol. The problem is that Rifampicin can, for some people, interact with anti-cholesterol drugs, making those drugs stop working. As a result, because the anti-cholesterol drugs stop working, people with a cholesterol problem before they took the Big 3, can find they have high cholesterol again. That's what happened for me. I hope this expalantion helps, Annie

REPLY

Hi All, just some info I read about for anyone suffering from the chronic cough that comes with MAC. Not talking about the productive cough to rid the lungs of excess mucus, but the annoying, constant cough that sometimes even leads to gagging. I just read an article in the ASHA Leader. (That’s the professional magazine for Speech Language Pathologists.) When The Coughing Won’t Stop, November 2019. It talks about receiving Behavioral Cough Suppressant Therapy, (BCST), from a Speech Language Pathologist, (SLP), that specializes in voice and upper airway disorders and has received additional training in BCST. I AM an SLP and have never heard about this before. I found it very interesting. 80% of patient’s benefit from BCST therapy to learn how to control and minimize the coughing that interferes with everyday life. They talk about the cause being hypersensitivity to outside stimuli; perfume, smoke, dust, change in air temps, talking, laughing, etc., and can also occur in certain areas of the brain. Hypersensitivity can also be caused by coughing! So coughing makes us cough more! Only problem is physicians are not aware of this therapy, (surprise), so they don’t know to recommend it, AND there aren’t many SLPs trained or educated in it. I thought everyone would find it interesting and there may be some who would really benefit from this type of therapy.
Gina K

REPLY
Please login or register to post a reply.