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(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 group.

Sophie | @sophie1019 | Jul 28, 2016
In reply to @katemn "Sorry Folks, but the reality is that BIG money has chased cancer for years without a..." + (show)
@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

Jump to this post

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..

REPLY
Martin Jensen, Volunteer Mentor | @predictable | Jul 28, 2016
In reply to @heathert "I agree that if the scientists had some money to put into this they may find..." + (show)
@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.

Jump to this post

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

REPLY
JanetJ | @justjanet | Jul 28, 2016
In reply to @katemn "Sorry Folks, but the reality is that BIG money has chased cancer for years without a..." + (show)
@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

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | Jul 28, 2016
In reply to @katemn "Sorry Folks, but the reality is that BIG money has chased cancer for years without a..." + (show)
@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!

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | Jul 28, 2016
In reply to @katemn "Sorry Folks, but the reality is that BIG money has chased cancer for years without a..." + (show)
@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

Jump to this post

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.

REPLY
heathert | @heathert | Jul 28, 2016
In reply to @heathert "I agree that if the scientists had some money to put into this they may find..." + (show)
@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.

Jump to this post

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

REPLY
Katherine, Alumni Mentor | @katemn | Jul 28, 2016
In reply to @heathert "I agree that if the scientists had some money to put into this they may find..." + (show)
@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.

Jump to this post

Thanks predictable! Just prior to my travels I saw my internist to renew my travel prescriptions .. I always travel with various prescriptions when I am out of the country. She spoke of doctor’s current concern about “supper bugs” that have become resistant to most antibiotics because doctors are over prescribing antibiotics just to keep patients happy .. frankly.

This would certainly give the medical community another arrow in their quiver for those “super bugs” .. even if not for any of our particular diseases. Good news no matter! Hope it comes about in a shorter time than two years!

REPLY
Katherine, Alumni Mentor | @katemn | Jul 28, 2016
In reply to @katemn "Sorry Folks, but the reality is that BIG money has chased cancer for years without a..." + (show)
@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

Jump to this post

Janet, I think you know my heart by now .. if ever I have NOT made you feel safe or feel good .. it was not my intent. I am very glad you spoke from your heart .. and I am hearing you. Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jul 28, 2016
In reply to @sophie1019 "Thanks for your response. I notice that of I take the meds one at a time,..." + (show)
@sophie1019

Thanks for your response. I notice that of I take the meds one at a time, maybe 10 to 15 minutes apart ( per doctor’s order)
with a piece of dry toast, I have no stomach issues at all. Maybe that will help. I also have an eye doctor’s appointment on july 21 to get my eyes checked. I was also told to download a colorblindness app on my phone to keep my colorblindness in check. I have only been on the meds for approximately 3 weeks, got a long way to go.

Jump to this post

Thank you, Sophie! That is GREAT information to add to our Forum’s “file cabinet” of knowledge for current and future seekers of knowledge on our shared journey! Don’t forget that these pages are read by all the new people who are just beginning the journey .. who are just thirsting for knowledge on just how to handle all the little details of this journey. Everything we can add that can help them on their way is wonderful!

This Forum truly IS like a MAI/MAC “FILE CABINET” on how to deal with the disease. The tips and help we have found that help us .. will help those In the future! It is US .. “playing it forward”! Keep up the good work! Hugs to all! Katherine

Sophie, the only thing I would add is: don’t drive yourself crazy with “testing frequently”. It I like weighing yourself every day when on a diet .. will make yourself crazy! I would ask your doctor .. but my guess is that if you choose a day of the week and check weekly .. that would be sufficient! Due Diligence but not becoming your disease!

REPLY
Sophie | @sophie1019 | Jul 29, 2016
In reply to @sophie1019 "Thanks for your response. I notice that of I take the meds one at a time,..." + (show)
@sophie1019

Thanks for your response. I notice that of I take the meds one at a time, maybe 10 to 15 minutes apart ( per doctor’s order)
with a piece of dry toast, I have no stomach issues at all. Maybe that will help. I also have an eye doctor’s appointment on july 21 to get my eyes checked. I was also told to download a colorblindness app on my phone to keep my colorblindness in check. I have only been on the meds for approximately 3 weeks, got a long way to go.

Jump to this post

Thanks for reminding me not to let the virus define me but let me define the virus. And for those out there who are just starting this journey, lay your hands on your body and ask God to heal whatever ails you. God can heal and he will answer prayer. I feel great. One of my friends told me yesterday, “you look great”. I feel great also. I exercise regularly, I changed my diet, and I PRAY often…… and I will continue to prayer for those, who like me are just starting out on this our journey and that we will be at peace with whatever decision we make about our health and life. Have a good morning…….

REPLY
Martin Jensen, Volunteer Mentor | @predictable | Jul 29, 2016
In reply to @heathert "I agree that if the scientists had some money to put into this they may find..." + (show)
@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.

Jump to this post

@katemn, The war against antibiotic-resistant bacteria took another big step yesterday. The US and UK announced a partnership to spend $350 million over 5 years in speeding up discovery, development, and distribution of new antibiotics. This comes on the heels of last week’s disclosure of a new antibiotic that kills MRSA; it is called “lugdunin” and is formulated naturally in the human nose!

The new partnership includes the US Department of Health and Human Services and the US National Institute of Allergy and Infectious Diseases. For Britain, it is their Wellcome Trust and the AMR Center. Headquarters will be at Boston University’s School of Law.

The HHS is working on nine new antibiotics that could move into the market over the next three years. The project plans to work every year on 20 candidate drugs that can defeat resistant bacteria. Here are links to more info:
http://www.bu.edu/today/2016/carb-x/https://www.washingtonpost.com/news/to-your-health/wp/2016/07/28/major-global-partnership-to-speed-antibiotic-development-launched/

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | Jul 29, 2016
In reply to @heathert "I agree that if the scientists had some money to put into this they may find..." + (show)
@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.

Jump to this post

@predictable, this is such uplifting news for many … not just those of us with NTM or MAC/MAI. Thanks for sending this info.

REPLY
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