(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

@boomerexpert

I’ve done some research on MAC/MAI reinfection, as the notion makes sense to me…if, for instance, I was infected via my water (through the mist in the shower, most likely culprit), if I eliminate the bacteria from my water system, at least I can keep the matter from worsening. To that end, I found this from Nat’l Jewish titled “Ways to Reduce Exposure to MAC Bacteria” https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx
I have as a result raised temp of the hot water heater to 135 (the level required to kill the bacteria in the hot water), and am purchasing a whole-house filtration system at the 0.2 microns filtering level they recommend for the complete filtering out of all bacteria, plus a UV cartridge that first keeps the bacteria from reproducing before they are filtered out, total cost (before installation) about $300, to eliminate the bacteria in all household water.
Hope this is helpful to all…

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Thanks for all the info Boomerexpert! Can you share where you found the filter? I have been looking online but haven’t found anything so it would be great to look at what you found. Thanks. Janet

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@mimi68

Thank you for your response and concern. I wondered about another test that would be faster, as I really have trouble coughing up enough to get the sample, then once I get it to the lab it takes 12 weeks for the results. I think I’ll call the office and talk to his nurse about this. Maybe there’s an issue with the insurance (I have medicare), not sure. Have you had any side effects from the meds yet? Are you taking all 3 antibiotics and 3 days a week, or every day? I wish you luck with them and hope you can get over this infection and feel good soon.

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Hello @sophie1019,
Where are you being treated in Wisconsin and who is your pulmonologist? Just wondering.
Paula

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Sorry Folks, but the reality is that BIG money has chased cancer for years without a cure .. fund raisers .. an incredible amount of money for research. The pharmaceutical companies have absolutely NO interest in the tiny population of MAC/Mai patients .. that is our reality. We are an “orphan disease” which would yield zero profits in terms of what they are looking for. THAT is our truth. So am I going to beat my head against the wall with the small amount of energy I have .. NOPE!

For myself I know that for my best health and recovery it is important that I ” put ALL my energy into what I can control .. and let go of what I cannot control”. To me that means focusing on putting my energy into living my life as happily and healthily as I possibly can each and every day .. giving thanks for my blessings each day .. and NOT focusing on what I CANNOT control .. which is the outside world of big business .. pharmaceutical companies that only care about profits etc. To me peace and serenity are primary in my life .. AND a caring supportive environment on this Forum. Let’s all focus on the positive in our lives .. remembering those around us who have it SO much worse! Let’s count our blessings each and every day. Go in peace. Katherine

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@katemn

Sorry Folks, but the reality is that BIG money has chased cancer for years without a cure .. fund raisers .. an incredible amount of money for research. The pharmaceutical companies have absolutely NO interest in the tiny population of MAC/Mai patients .. that is our reality. We are an “orphan disease” which would yield zero profits in terms of what they are looking for. THAT is our truth. So am I going to beat my head against the wall with the small amount of energy I have .. NOPE!

For myself I know that for my best health and recovery it is important that I ” put ALL my energy into what I can control .. and let go of what I cannot control”. To me that means focusing on putting my energy into living my life as happily and healthily as I possibly can each and every day .. giving thanks for my blessings each day .. and NOT focusing on what I CANNOT control .. which is the outside world of big business .. pharmaceutical companies that only care about profits etc. To me peace and serenity are primary in my life .. AND a caring supportive environment on this Forum. Let’s all focus on the positive in our lives .. remembering those around us who have it SO much worse! Let’s count our blessings each and every day. Go in peace. Katherine

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@katemn, I just LOVE your reply about BIG money going into cancer treatments & cure for years. And now with the aging population, a lot more money is going into the anticipated upcoming explosion in Alzheimer’s disease. So I’ll take my 3 antibiotics, do my breathing exercises, get plenty of rest, think positive . . . and thank heaven I only have NTM/MAC which has been very treatable for me since 2007. Yep, I count my blessing EVERY DAY — honest! I have very little to complain about.

Paula

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Paula, LOVE you .. we are truly kindred spirits!! Honestly all I have to do is look around me .. just open my eyes to realize just how blessed I am .. how LITTLE I have to B—ch about!! I can hear .. I can see .. I can walk .. I can breath .. I can laugh .. I can love .. SO many things that so many others are unable to do! Ok .. so I can’t do them all so perfectly now that I am 73 .. so WHAT!! SO glad to hear from you . you just keep rolling along and letting me hear your positive input from time to time. Our Forum NEEDS your positive energy!! Sending you a Big Hug! Katherine

Liked by judy1940

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@katemn

Paula, LOVE you .. we are truly kindred spirits!! Honestly all I have to do is look around me .. just open my eyes to realize just how blessed I am .. how LITTLE I have to B—ch about!! I can hear .. I can see .. I can walk .. I can breath .. I can laugh .. I can love .. SO many things that so many others are unable to do! Ok .. so I can’t do them all so perfectly now that I am 73 .. so WHAT!! SO glad to hear from you . you just keep rolling along and letting me hear your positive input from time to time. Our Forum NEEDS your positive energy!! Sending you a Big Hug! Katherine

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Thanks Katherine. LIFE IS GOOD!

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@katemn

Sorry Folks, but the reality is that BIG money has chased cancer for years without a cure .. fund raisers .. an incredible amount of money for research. The pharmaceutical companies have absolutely NO interest in the tiny population of MAC/Mai patients .. that is our reality. We are an “orphan disease” which would yield zero profits in terms of what they are looking for. THAT is our truth. So am I going to beat my head against the wall with the small amount of energy I have .. NOPE!

For myself I know that for my best health and recovery it is important that I ” put ALL my energy into what I can control .. and let go of what I cannot control”. To me that means focusing on putting my energy into living my life as happily and healthily as I possibly can each and every day .. giving thanks for my blessings each day .. and NOT focusing on what I CANNOT control .. which is the outside world of big business .. pharmaceutical companies that only care about profits etc. To me peace and serenity are primary in my life .. AND a caring supportive environment on this Forum. Let’s all focus on the positive in our lives .. remembering those around us who have it SO much worse! Let’s count our blessings each and every day. Go in peace. Katherine

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I see Dr. Kenneth Presberg at Froedtert Hospital in Milwaukee. He is teaches and also sees patients. He is a wonderful doc, very thorough and very knowledgeable.

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@katemn

Sorry Folks, but the reality is that BIG money has chased cancer for years without a cure .. fund raisers .. an incredible amount of money for research. The pharmaceutical companies have absolutely NO interest in the tiny population of MAC/Mai patients .. that is our reality. We are an “orphan disease” which would yield zero profits in terms of what they are looking for. THAT is our truth. So am I going to beat my head against the wall with the small amount of energy I have .. NOPE!

For myself I know that for my best health and recovery it is important that I ” put ALL my energy into what I can control .. and let go of what I cannot control”. To me that means focusing on putting my energy into living my life as happily and healthily as I possibly can each and every day .. giving thanks for my blessings each day .. and NOT focusing on what I CANNOT control .. which is the outside world of big business .. pharmaceutical companies that only care about profits etc. To me peace and serenity are primary in my life .. AND a caring supportive environment on this Forum. Let’s all focus on the positive in our lives .. remembering those around us who have it SO much worse! Let’s count our blessings each and every day. Go in peace. Katherine

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Hello Sophie,
I see Dr. Lipchick also at Froedtert! Small world, isn’t it!

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Hello Rose,
I just returned to town .. sorry not to get back to you sooner. I hope you don’t mind but I am going to post this on our Forum and I really encourage you to join and read back on the previous posts. I think you will learn a lot about our shared journey and will find very nice supportive people who really understand what you are going through.

No, I understand there is not truly a “cure” .. but I have been “stable” since May 2014. That is just GREAT that you do not cough and are able to be active .. that means you are able to keep those lungs healthy!

I also went at one time to the University of Miami .. which doctor do you see .. just curious?

The link to our Forum that you can read and find good information on is:
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=9
Rose, hope to see you there soon posting away! Sending you a hug! Katherine
____________________________________

Hi
I have MAC disease and i have been on antibiotics since 2004. I don’t see any cure or hope for one. The good news is i don’t cough and i am active. My doctor is at University of Miami and he is pretty good. I also have been to the National Jewish Hospital in Denver. On top of my Mac , i have CF. Rose

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@katemn

Sorry Folks, but the reality is that BIG money has chased cancer for years without a cure .. fund raisers .. an incredible amount of money for research. The pharmaceutical companies have absolutely NO interest in the tiny population of MAC/Mai patients .. that is our reality. We are an “orphan disease” which would yield zero profits in terms of what they are looking for. THAT is our truth. So am I going to beat my head against the wall with the small amount of energy I have .. NOPE!

For myself I know that for my best health and recovery it is important that I ” put ALL my energy into what I can control .. and let go of what I cannot control”. To me that means focusing on putting my energy into living my life as happily and healthily as I possibly can each and every day .. giving thanks for my blessings each day .. and NOT focusing on what I CANNOT control .. which is the outside world of big business .. pharmaceutical companies that only care about profits etc. To me peace and serenity are primary in my life .. AND a caring supportive environment on this Forum. Let’s all focus on the positive in our lives .. remembering those around us who have it SO much worse! Let’s count our blessings each and every day. Go in peace. Katherine

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It sure is!!! Don’t you think thsee are s ok me of the best doctors in the world! !! Ive been seeing him since 2000..

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@heathert

I agree that if the scientists had some money to put into this they may find the answer quite soon, there is enough of us with this for the pharmaceutical companies to look into this a bit more. Wish I knew how to get this ball rolling. My doc said there is no new medicines in the pipeline just rehashing of the old antibiotic meds. We need new antibiotics to be produced, and not just for MAC, it has been in our news alot.

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@heathert and @katemn, some astounding good news came out of a scientific conference this week: A new antibiotic — so powerful it destroys MRSA — has been isolated from cells in the human nose! At this juncture, it is a promise not a reality; it will take a couple of years to develop it as a medication. But it is an amazing discovery.

Think of it, the most powerful antibiotic known to medicine is made naturally in the forefront of our respiratory system! For starters, you might Google the word “lugdunin” which is the name of the antibiotic substance that has been isolated. Here are two web site stories on the discovery and its disclosure this week:

http://www.sciencemag.org/news/2016/07/new-antibiotic-found-human-nose

http://www.nature.com/news/the-nose-knows-how-to-kill-mrsa-1.20339

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@katemn

Sorry Folks, but the reality is that BIG money has chased cancer for years without a cure .. fund raisers .. an incredible amount of money for research. The pharmaceutical companies have absolutely NO interest in the tiny population of MAC/Mai patients .. that is our reality. We are an “orphan disease” which would yield zero profits in terms of what they are looking for. THAT is our truth. So am I going to beat my head against the wall with the small amount of energy I have .. NOPE!

For myself I know that for my best health and recovery it is important that I ” put ALL my energy into what I can control .. and let go of what I cannot control”. To me that means focusing on putting my energy into living my life as happily and healthily as I possibly can each and every day .. giving thanks for my blessings each day .. and NOT focusing on what I CANNOT control .. which is the outside world of big business .. pharmaceutical companies that only care about profits etc. To me peace and serenity are primary in my life .. AND a caring supportive environment on this Forum. Let’s all focus on the positive in our lives .. remembering those around us who have it SO much worse! Let’s count our blessings each and every day. Go in peace. Katherine

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I just hope that this is still a forum that people will feel comfortable coming to if they have a bad day or are frustrated or need to vent. It’s a perfect place to get a pick me up. We shouldn’t judge anyone on how they choose to take their journey. We can offer advice, help, support and suggestions but in the end we all will do it our own way. Who am I to say my way is the correct way? I just want this to be a safe, feel good place. No judgements. Janet

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@katemn

Sorry Folks, but the reality is that BIG money has chased cancer for years without a cure .. fund raisers .. an incredible amount of money for research. The pharmaceutical companies have absolutely NO interest in the tiny population of MAC/Mai patients .. that is our reality. We are an “orphan disease” which would yield zero profits in terms of what they are looking for. THAT is our truth. So am I going to beat my head against the wall with the small amount of energy I have .. NOPE!

For myself I know that for my best health and recovery it is important that I ” put ALL my energy into what I can control .. and let go of what I cannot control”. To me that means focusing on putting my energy into living my life as happily and healthily as I possibly can each and every day .. giving thanks for my blessings each day .. and NOT focusing on what I CANNOT control .. which is the outside world of big business .. pharmaceutical companies that only care about profits etc. To me peace and serenity are primary in my life .. AND a caring supportive environment on this Forum. Let’s all focus on the positive in our lives .. remembering those around us who have it SO much worse! Let’s count our blessings each and every day. Go in peace. Katherine

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I agree, I’ve never had a bad doc or nurse or experience there … quite the opposite, many many great — some funny — experiences there. My primary care doc is also just fabulous!

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@katemn

Sorry Folks, but the reality is that BIG money has chased cancer for years without a cure .. fund raisers .. an incredible amount of money for research. The pharmaceutical companies have absolutely NO interest in the tiny population of MAC/Mai patients .. that is our reality. We are an “orphan disease” which would yield zero profits in terms of what they are looking for. THAT is our truth. So am I going to beat my head against the wall with the small amount of energy I have .. NOPE!

For myself I know that for my best health and recovery it is important that I ” put ALL my energy into what I can control .. and let go of what I cannot control”. To me that means focusing on putting my energy into living my life as happily and healthily as I possibly can each and every day .. giving thanks for my blessings each day .. and NOT focusing on what I CANNOT control .. which is the outside world of big business .. pharmaceutical companies that only care about profits etc. To me peace and serenity are primary in my life .. AND a caring supportive environment on this Forum. Let’s all focus on the positive in our lives .. remembering those around us who have it SO much worse! Let’s count our blessings each and every day. Go in peace. Katherine

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Gee, I sure hope that people feel comfortable posting here, no matter if they’re having a bad day, good day, or just an ‘off’ day. This is the place to ask questions, vent, get support and encouragement, help others, etc. I’m sorry if I led anyone to feel that I was judgmental.

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@heathert

I agree that if the scientists had some money to put into this they may find the answer quite soon, there is enough of us with this for the pharmaceutical companies to look into this a bit more. Wish I knew how to get this ball rolling. My doc said there is no new medicines in the pipeline just rehashing of the old antibiotic meds. We need new antibiotics to be produced, and not just for MAC, it has been in our news alot.

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Wow thats fantastic, science is so amazing, very interesting article.Thanks predictable

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