(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.

@jentaylor

Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2 months. I was seen at Mayo in Minnesota over a 2 week period. I received so much info from all of the evaluation. I have been overwhelmed & scared & I have been trying to process all of this on my own. It hasn't been going to great so I'm trying to reach out & thought what a better group to talk to than others who are going through similar life experiences. After have a positive MAC culture from my bronchial washings, I was told that I had MAC & need to be treated. Previously (Sept. 2016) they diagnosed me with bronchiectasis. Nothing was seen on my CT scan or X-ray that showed the colonies seen from MAC. One of the big reasons I was going to Mayo was to get an expert opinion from Dr. Askamit. After Dr. Askamit read through my many, many, many records over a course of 10 years, since I first got sick, he concluded that at this time I may have MAC but it should not be treated at this time because it does not appear on a CAT scan. I must tell you that I was shocked by his response as it was completely different than my pulmonologist locally. And to be honest, I seem to have met the criteria to be considered to have MAC & to start treatment. I have many underlying illnesses & it's so hard to sort out what is what. Dr. Aksamit said to wait until it is seen on a CT scan. I have very mixed feelings about this. I am concerned that I should just wait until I become more infected to start treatment. Personally, I'd rather treat it BEFORE it gets worse. I guess I'm the only one who things that. My local pulmonologist changed his mind & decided not to start treatment at this time. Don't get me wrong, I do NOT want take all of these meds that can cause such grief & danger!!! I also don't want to just sit around & wait for things to get worse!!! Am I wrong in thinking that?? I value your opinion. Oh, and I have had the bronchiectasis diagnosis since Sept 2007 based on CT scan but now, when Dr. Askamit looked at a different CT scan, he said he didn't see that. I'm SO confused. I know one thing to be true...I'm in a mess of a health situation with multi system dysfunctional & disease. I am sick every day of my life for 10 years now & without an underlying diaganosis of what disease I have in the lungs. They said I would not make past 2 years but here I am, 10 years later, alive & trying my absolute best to lead as much of a normal life as possible...mostly for my family. I'm back to a point where I am requiring supplemental oxygen again. I had been able to breath on my own for the past 3 years. What changed? We don't know. I go into respiratory failure several times a year resulting in hospitalizations. We still can't answer the question of why my lungs don't convert oxygen from the air I breath in??? Anyway, I apologize for rambling on. I have been so withdrawn & sad, scared & lonely since receiving all of this new information. I also learned I have stage 1 heart failure & other metabolic syndrome that leaves me as the "perfect storm for a cardiac event" as the physician stated it. I ended up at Johns Hopkins a couple weeks ago with an excellent cardiologist who is trying to help my sort things out. My weight is a contributing factor to my alveolib hypoventilation &
We discussed having the stomach sleeve procedure to help me loose weight. There is so much on my mind & I apologize that I just rambeled on without even diving the long note into paragraphs!!! That's just how my mind has been lately. I am in NO way trying to ask for self-pity...I'm just trying to get through my reality of day to day life the best that I can & with the most quality that I can. I'm just so confused right now. Oh, I had another bronch done on Wed. & we sent the washings for culture & this will probably be the ultimate testing to see if the washing show positive for MAC. We won't know for 6 weeks! Again, I welcome your feedback... thanks for taking the time to read this!

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@Paula_MAC2007, Paula and @barbjh, Barb, this is just me .. but I not give a HOOEY what anyone thinks .. friends, strangers, neighbors .. after what I have been through in the past few months .. ALL I care about is MY quality of life!! NOT the stares OR alarm of other people .. it is MY LIFE .. MY BODY .. MY HEALTH .. just MY opinion .. but I am going to wear my Cambridge quality mask when I am traveling .. working with soil .. or around people I feel may be ill .. WHENEVER I feel a potential health risk. I am feeling a bit better right now .. and I NEVER want to go through what I went through February to May EVER again. If my Cambridge mask can help me even a little bit .. I could care less what ANYONE thinks! Just my opinion but I'm going to lay it out there after what I've gone through. I don't give one flying leap what doctors are currently saying .. they change their minds with the winds! Perhaps strongly worded .. but that is how I feel. Hugs to all! Katherine

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@afcardieri

Hi! I'm new here, diagnosed last January, and my name is Filis. Thank you for this info. I'm also concerned about MAC in bottled water, is it safe to drink and to make ice? What about ice and drinks at restaurant fountains? My doc told me a mixture of vinegar and water kills MAC on surfaces, faucets, etc. anyone else told this? How do you have the water tested for MAC? Thank you-all the best, Filis

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My sentiments exactly.
 

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@jentaylor

Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2 months. I was seen at Mayo in Minnesota over a 2 week period. I received so much info from all of the evaluation. I have been overwhelmed & scared & I have been trying to process all of this on my own. It hasn't been going to great so I'm trying to reach out & thought what a better group to talk to than others who are going through similar life experiences. After have a positive MAC culture from my bronchial washings, I was told that I had MAC & need to be treated. Previously (Sept. 2016) they diagnosed me with bronchiectasis. Nothing was seen on my CT scan or X-ray that showed the colonies seen from MAC. One of the big reasons I was going to Mayo was to get an expert opinion from Dr. Askamit. After Dr. Askamit read through my many, many, many records over a course of 10 years, since I first got sick, he concluded that at this time I may have MAC but it should not be treated at this time because it does not appear on a CAT scan. I must tell you that I was shocked by his response as it was completely different than my pulmonologist locally. And to be honest, I seem to have met the criteria to be considered to have MAC & to start treatment. I have many underlying illnesses & it's so hard to sort out what is what. Dr. Aksamit said to wait until it is seen on a CT scan. I have very mixed feelings about this. I am concerned that I should just wait until I become more infected to start treatment. Personally, I'd rather treat it BEFORE it gets worse. I guess I'm the only one who things that. My local pulmonologist changed his mind & decided not to start treatment at this time. Don't get me wrong, I do NOT want take all of these meds that can cause such grief & danger!!! I also don't want to just sit around & wait for things to get worse!!! Am I wrong in thinking that?? I value your opinion. Oh, and I have had the bronchiectasis diagnosis since Sept 2007 based on CT scan but now, when Dr. Askamit looked at a different CT scan, he said he didn't see that. I'm SO confused. I know one thing to be true...I'm in a mess of a health situation with multi system dysfunctional & disease. I am sick every day of my life for 10 years now & without an underlying diaganosis of what disease I have in the lungs. They said I would not make past 2 years but here I am, 10 years later, alive & trying my absolute best to lead as much of a normal life as possible...mostly for my family. I'm back to a point where I am requiring supplemental oxygen again. I had been able to breath on my own for the past 3 years. What changed? We don't know. I go into respiratory failure several times a year resulting in hospitalizations. We still can't answer the question of why my lungs don't convert oxygen from the air I breath in??? Anyway, I apologize for rambling on. I have been so withdrawn & sad, scared & lonely since receiving all of this new information. I also learned I have stage 1 heart failure & other metabolic syndrome that leaves me as the "perfect storm for a cardiac event" as the physician stated it. I ended up at Johns Hopkins a couple weeks ago with an excellent cardiologist who is trying to help my sort things out. My weight is a contributing factor to my alveolib hypoventilation &
We discussed having the stomach sleeve procedure to help me loose weight. There is so much on my mind & I apologize that I just rambeled on without even diving the long note into paragraphs!!! That's just how my mind has been lately. I am in NO way trying to ask for self-pity...I'm just trying to get through my reality of day to day life the best that I can & with the most quality that I can. I'm just so confused right now. Oh, I had another bronch done on Wed. & we sent the washings for culture & this will probably be the ultimate testing to see if the washing show positive for MAC. We won't know for 6 weeks! Again, I welcome your feedback... thanks for taking the time to read this!

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ok, thank you Terri!
 

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@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

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Terri, I too was told for years that I had asthma mainly because once it
starts on one medical record, the following doctors just assume that first
diagnosis was correct. I did not have asthma, and PFT show no improvement with
albuterol.
 

REPLY
@afcardieri

Hi! I'm new here, diagnosed last January, and my name is Filis. Thank you for this info. I'm also concerned about MAC in bottled water, is it safe to drink and to make ice? What about ice and drinks at restaurant fountains? My doc told me a mixture of vinegar and water kills MAC on surfaces, faucets, etc. anyone else told this? How do you have the water tested for MAC? Thank you-all the best, Filis

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The frequency is every six months.
 

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@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

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OMG! Well, I am gratefull that I am in their system and seen on a regular
basis. I am sorry that you are having a tough time getting in; keep calling and
ask about any cancelations. Keep trying because you never know if they hire more
doctors in the near future to fill the demand.
 

REPLY
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

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@katemn Katherine, I don't follow all of the messages in this thread, there is such an abundance of them and since it is not something that is a problem for me I can't take the time, but I occasionally check them out.
This post is scary! This could be in my water and coming out in the shower? Around here the only concern in the water I have heard about prior to this is radon. I live in NH, the "granite state" and many homes are built on top of granite. Somehow that gives off radon. If in your water radon can be really harmful when aerated, as in cause cancer. It can also be in the air in your home. Expensive procedures must be undertaken when it is found.
So now I have another concern. I will need to get our water checked for this. This "MAC/MAI" sounds miserable.
Thanks for the info.
JK

REPLY
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

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@windwalker this is so frustrating how these things get on our record and live there forever. I am trying to get corrections made on my portal record now because I do plan to change doctors so when a new doctor gets my information I would like it to be correct. It has been so frustrating trying to get my PCP to make these changes but I have accomplished getting a couple of them corrected.
JK

REPLY
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

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@contentandwell, JK .. as the saying goes "Forget about it!". You can ALSO be struck by lightening .. get run over by a kangaroo .. who know all the catastrophes that can befall us! MAC/MAI is JUST one of them .. AND you would be well aware of it if it were to befall you .. WHEN you are advised of .. AFTER an Xray or SOMETHING shows up medically. Until that time .. STOP worrying about it! The MOST important thing you can do is stay healthy .. eat right .. exercise and stay serene! Hugs to you! Katherine

From my File Cabinet:
I LOVED THIS NOTE OF SANITY FROM MEMBER @maryjo2sell .. Mary Jo .. Just to join the discussion I think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don't think any of us truly know how we got our NTM. (non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live. (p.s. p.s. from Katherine .. After I read Mary Jo's note I thought about I had just been to a movie the night before .. had a soda out of THEIR faucet with IT'S biofilm and had ice cubes from THEIR machine .. had not even thought about it! Plus had dinner at a restaurant before that .. just think about that .. heavens protect us!! Mary Jo is SO correct in bringing sanity to our conversation!)

REPLY
@jentaylor

Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2 months. I was seen at Mayo in Minnesota over a 2 week period. I received so much info from all of the evaluation. I have been overwhelmed & scared & I have been trying to process all of this on my own. It hasn't been going to great so I'm trying to reach out & thought what a better group to talk to than others who are going through similar life experiences. After have a positive MAC culture from my bronchial washings, I was told that I had MAC & need to be treated. Previously (Sept. 2016) they diagnosed me with bronchiectasis. Nothing was seen on my CT scan or X-ray that showed the colonies seen from MAC. One of the big reasons I was going to Mayo was to get an expert opinion from Dr. Askamit. After Dr. Askamit read through my many, many, many records over a course of 10 years, since I first got sick, he concluded that at this time I may have MAC but it should not be treated at this time because it does not appear on a CAT scan. I must tell you that I was shocked by his response as it was completely different than my pulmonologist locally. And to be honest, I seem to have met the criteria to be considered to have MAC & to start treatment. I have many underlying illnesses & it's so hard to sort out what is what. Dr. Aksamit said to wait until it is seen on a CT scan. I have very mixed feelings about this. I am concerned that I should just wait until I become more infected to start treatment. Personally, I'd rather treat it BEFORE it gets worse. I guess I'm the only one who things that. My local pulmonologist changed his mind & decided not to start treatment at this time. Don't get me wrong, I do NOT want take all of these meds that can cause such grief & danger!!! I also don't want to just sit around & wait for things to get worse!!! Am I wrong in thinking that?? I value your opinion. Oh, and I have had the bronchiectasis diagnosis since Sept 2007 based on CT scan but now, when Dr. Askamit looked at a different CT scan, he said he didn't see that. I'm SO confused. I know one thing to be true...I'm in a mess of a health situation with multi system dysfunctional & disease. I am sick every day of my life for 10 years now & without an underlying diaganosis of what disease I have in the lungs. They said I would not make past 2 years but here I am, 10 years later, alive & trying my absolute best to lead as much of a normal life as possible...mostly for my family. I'm back to a point where I am requiring supplemental oxygen again. I had been able to breath on my own for the past 3 years. What changed? We don't know. I go into respiratory failure several times a year resulting in hospitalizations. We still can't answer the question of why my lungs don't convert oxygen from the air I breath in??? Anyway, I apologize for rambling on. I have been so withdrawn & sad, scared & lonely since receiving all of this new information. I also learned I have stage 1 heart failure & other metabolic syndrome that leaves me as the "perfect storm for a cardiac event" as the physician stated it. I ended up at Johns Hopkins a couple weeks ago with an excellent cardiologist who is trying to help my sort things out. My weight is a contributing factor to my alveolib hypoventilation &
We discussed having the stomach sleeve procedure to help me loose weight. There is so much on my mind & I apologize that I just rambeled on without even diving the long note into paragraphs!!! That's just how my mind has been lately. I am in NO way trying to ask for self-pity...I'm just trying to get through my reality of day to day life the best that I can & with the most quality that I can. I'm just so confused right now. Oh, I had another bronch done on Wed. & we sent the washings for culture & this will probably be the ultimate testing to see if the washing show positive for MAC. We won't know for 6 weeks! Again, I welcome your feedback... thanks for taking the time to read this!

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@katemn so glad to hear you are doing better, Im like you, you gotta do what you gotta do. I have ordered my cambridge mask and should be recieving it soon. Hugs Heather

REPLY
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