(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

@katemn

@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa

Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.

Please check in so I don’t worry about you .. just a short note to let me know your current status.

I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!

I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier

https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier–Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate

held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine

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I am saying and feeling more gratitudes especially this week after being able to work for a month now and so much more. It is amazing the peace I am feeling knowing that I don’t have to work myself so hard. I have always been very driven, measuring my day by how much I have accomplished. I still don’t know whether or not I have MAC – but the symptoms and cscans seem to point there on top of the bronchiectasis. My friends are now more understanding that I don’t talk much on the phone and don’t push myself to be everywhere all the time. Have a great weekend. (I am going to start by watching a French cooking movie!) And friends are going to help me do lawn work the next weekend. God Bless, right?

REPLY
@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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Apportee…you asked if you cough alot with MAC….for 2 years…before i was diagnosed from the washings from a bronchoscope which grew the cursed MAC…..every evening from 5 pm for 2 to 5 hours I would cough ,wheeze and bring up lots of thick..white or clear.mucus….which tested in a routine culture…negative. I heard Dr Daley an NTM specialist at National Jewish…comment that MAC mucus is Clear to white.terrid

REPLY
@katemn

@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa

Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.

Please check in so I don’t worry about you .. just a short note to let me know your current status.

I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!

I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier

https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier–Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate

held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine

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Be not afraid of a bronch! I had one…put you under so not conscious…you wake up and it’s over! The worst part was sleeping of the anesthesia…not bad!

REPLY
@katemn

@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa

Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.

Please check in so I don’t worry about you .. just a short note to let me know your current status.

I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!

I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier

https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier–Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate

held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine

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Thank you Katherine, I was feeling better I thought but today I felt the shortness of breath and the heavy presure on my chest. I think is the MAC disease but my Dr. thinks is my acid reflux. I do a little bit of house work and I’m catching my breath. Sometimes I wonder if the meds I’m taking are working. Anyone has this problem and taking more than 3 x a week? The Unison and the Magnesium are alright with the meds? I will try to find another meds to take for cholesterol. Cila.

REPLY
@katemn

@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa

Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.

Please check in so I don’t worry about you .. just a short note to let me know your current status.

I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!

I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier

https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier–Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate

held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine

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I’ve had hot flashes during the day and at night ever since I started menopause. They are less frequent now, at night I usually have at least one hot spell. I just kick the covers off until I cool off. My pj aren’t wet from sweat. My Dr always asks me if I have night sweats. I’ve told him what happens to me. He says mine aren’t considered night sweats. He says with a night sweat you wake up so wet from sweat that you have to get up and change pjs.
Lisa @tutti

REPLY
@katemn

@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa

Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.

Please check in so I don’t worry about you .. just a short note to let me know your current status.

I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!

I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier

https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier–Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate

held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine

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I had the night sweats before I was diagnosed with MAC. This was one of my first symptoms. I had hot flashes when I was taken off estrogen, so much that I asked to put back on. They were miserable, but was different from night sweats. When I had those, I would wake up so wet I would have to change clothes and at times change bed linens. These got more infrequent as treatment for MAC continued.

REPLY
@katemn

@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa

Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.

Please check in so I don’t worry about you .. just a short note to let me know your current status.

I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!

I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier

https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier–Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate

held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine

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Cila, Unison and Magnesium have always been on my med list as “over the counter” and Dr. Aksamit has never mentioned anything so I think all is well .. it has worked for me .. that is all I can say. You might also talk to your doctor about trying a different Gerds med? I know I had to try several before I found the one that worked well for me. Hugs to you! Katherine

REPLY
@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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Apportee (do you have a first name?) .. I might add to Terri D. that in addition to the clear/white mucus .. I also have light to dark yellow spots in the middle of the mucus at various times. Dr. Aksamit doesn’t seem to be too alarmed .. just asks me the size and darkness of the yellow spots. I only add this so people won’t be too alarmed if they see yellow in their sputum. It SHOULD be reported to your doctor .. BUT do not get too worried. it has happened to me all along for years .. and I am still hopping along! Hugs to all! Katherine

REPLY
@katemn

@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa

Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.

Please check in so I don’t worry about you .. just a short note to let me know your current status.

I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!

I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier

https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier–Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate

held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine

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Thanks Katherine, and also thanks to Jill, Nan, and TerriD for sharing your experiences with me. I appreciate it. I had my appointment with the respiratory specialist this morning and was surprised that he recommended no bronchoscopy and no treatment for MAC, although that is what he suspects I have, because I am fairly healthy and don’t really have symptoms that are affecting my functioning. Even though I have bronchiectasis, he said that any further damage to my lungs as the result of MAC would be at the rate a glacier grows, i.e. extremely extremely slow, and that the treatment is worse than anything he suspects I would experience with the MAC and it is sometimes not successful. Has anyone else had this response from a specialist?

REPLY
@katemn

@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa

Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.

Please check in so I don’t worry about you .. just a short note to let me know your current status.

I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!

I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier

https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier–Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate

held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine

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Fran, I hardly know what to say. I have been pondering this since last night. Even went through all your past posts. Your situation is complex living in Canada where I am not very familiar with your medical options but I understand they are more limited than in the USA.

Bull that the treatment is worse than anything he suspects you would experience with the MAC and “sometimes not successful” .. what a ninny! .. you know from reading our Forum that we all are surviving and MOST of us THRIVING .. phooey to him! Sorry .. but sound like dollar savings to me .. just my opinion .. sorry.

This is just ME .. but even if I felt just GREAT .. but with what you have told us .. I don’t think I could sleep well at night until/unless I had gotten a second opinion from a Pulmonologist who specialized in MAC .. and/or had numerous MAC patients in the past 12 months. Who had done a bronchoscopy for me .. had the results cultured .. done a CT scan AND then gathered all the resulting information .. AND THEN had told me I did not need MAC treatment. I would THEN do a little dance of joy and go on with my life again feeling just great! But this is just me with my doing my “due diligence” and being a toughie!

I do not know if your financial situation allows you to travel to the USA for obtaining a second opinion? If not .. I just did the good old google! Google it YOURSELF .. and educate yourself to your Canadian options!! You may have to be your OWN best advocate .. be assertive .. in a nice positive way .. remember .. you get more with honey than vinegar .. BUT also remember “The squeaky wheel gets the oil”!! NOBODY cares about your body more than you do .. AND you are given but one body in this lifetime .. if YOU don’t take care of it .. WHO will?!

I just googled: CANADIAN MEDICAL RIGHTS TO A SECOND OPINION. I came up with .. that you might research:

https://www.cmpa-acpm.ca/-/when-a-patient-seeks-a-second-opinion

http://healthydebate.ca/personal-health-navigator/youre-doctor-wont-send-second-opinion

and then research you need to google the above statement some more .. AND then get moving with your due diligence .. IF that is what works for you .. AND that is what you want to do. It is YOUR life and your journey .. only you can decide the direction you want to take. We will all be there for you whatever you decide to do. Hugs to you! Katherine

REPLY
@katemn

@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa

Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.

Please check in so I don’t worry about you .. just a short note to let me know your current status.

I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!

I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier

https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier–Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate

held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine

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Katemn….bravo to your response to Fran!!!

REPLY
@katemn

@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa

Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.

Please check in so I don’t worry about you .. just a short note to let me know your current status.

I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!

I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier

https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier–Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate

held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine

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Terri, you know me .. I can only speak from my heart. Can’t fake it! Hugs to you! Katherine

Liked by tdrell

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@katemn

@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa

Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.

Please check in so I don’t worry about you .. just a short note to let me know your current status.

I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!

I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier

https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier–Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate

held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine

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Hello @fransky,

The respiratory specialist you saw today SUSPECTS you have NTM or MAC, and recommended no bronchoscopy and treatment for MAC. It seems you don’t have a definitive diagnosis. Did he tell you on what he based this probable diagnosis? What did he use to get this conclusion? If it’s not concrete evidence, I would ask for more testing to be sure. Could be several other things besides NTM.

For those actually diagnosed with NTM or MAC and not having symptoms – like you – not being started on treatment is pretty common. Did you know that many people contract NTM or MAC and get over it without treatment? That many people get it, don’t even know we have it, our bodies adjust and we get over it. So we don’t all need treatment (thankfully!) And yes, there is slow growing NTM, fast growing NTM as well as many types.

With a CONCRETE DIAGNOSIS of NTM or MAC, I can understand why your respiratory specialist would take a ‘wait and see’ approach, with your having no symptoms. Offhand, I don’t know what other health problems you have or the medical care in Canada. But I would ask your respiratory specialist for a ‘game plan’ . . . will you be watched for symptoms? at what point would treatment be warranted? will you get a CT scan again in a year to compare the growth or shrinkage of NTM, etc etc. Just my 2 cents worth!

Take care, and let us know what follow-up you get. Seems you need more discussion with your respiratory specialist or a 2nd opinion.
Paula

REPLY
@katemn

@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa

Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.

Please check in so I don’t worry about you .. just a short note to let me know your current status.

I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!

I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier

https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier–Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate

held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine

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Thanks so much for your thoughtful response, Katherine. It means a lot to me. I have been a little muddled this weekend, trying to think things through. I do have a lung functioning test coming up, and a follow up with my infectious disease specialist, so he may have a different opinion than the respiratory specialist. I will see what transpires from that. but in the meantime, am focusing on trying to stay as healthy as possible. I appreciate being part of this site and the connections made. I feel very supported.

REPLY
@katemn

@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa

Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.

Please check in so I don’t worry about you .. just a short note to let me know your current status.

I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!

I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier

https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier–Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate

held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine

Jump to this post

Hello Fran, so glad you are seeing you ID specialist .. make up a list of questions based on your thoughts and concerns and then do your due diligence. Make copious notes when you see him .. tell him exactly what the other doctor told you .. AND why that concerned you. Tell him what/how you would like to proceed FOR YOUR peace of mind .. see if the two of you are on the “same page” and he is willing to do what it takes to make sure you are at peace with your situation.

Please let us know how the appointment goes .. this may be your best shot at getting a good answer .. so do your level best to be well prepared. Frankly I have found on our Forum that many of our members have educated themselves about our disease to a greater degree than some of the doctors they have visited! So read up and know what tests and procedures would give you peace of mind .. and push for what you feel you need ..IF you feel you need them! You absolutely do NOT want unwarranted tests or procedures .. just the right and necessary ones. You are SO right about focusing on staying as healthy as possible until your appointment .. eat well .. exercise as much as you are able .. be kind to yourself .. and seek serenity! Sending you a hug! Katherine

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