(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

@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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Hi Irene, it helps to have someone understand & “get it” & doesn’t try to minimize it…thank you! It’s also good to hear someone else say, “yes, wait” on starting treatment until either another positive culture &/or it’s seen on a CT scan. Ok, will do. Thanks you, Irene!

REPLY

Hi @jentaylor I’m sure no one here thinks you’re asking for pity! We’re all on this same road, just at different points. I always say, “A burden shared, is a burden lightened.” (I’m not sure if I made that quote up or I read it somewhere and it stuck with me! Lol) But in any case, I believe the more people we share our burdens with the more people we have offering prayers for us. I hope and pray you find answers soon and can receive the treatment that helps you.

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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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Please All .. jump in and help .. support Jen in all the loving caring ways I know our Community is capable of .. I know you can do it!! Hugs to All! Katherine

Jen, I CANNOT tell you just HOW glad I am to hear from you .. I have been SOOOO worried about you .. my final plea to your husband was my cry in the dark .. truthfully I was afraid you had passed away and we would never even know about it. I do not have words to say to tell you how badly I feel about all you have been through .. all I can tell you is you know I care from all that has been in the past .. I will just keep sending you positive energy and hugs. I will try to write more later but know I am thinking of you. Many Hugs! Katherine

Liked by chinasmom

REPLY
@ginak

Hi @jentaylor I’m sure no one here thinks you’re asking for pity! We’re all on this same road, just at different points. I always say, “A burden shared, is a burden lightened.” (I’m not sure if I made that quote up or I read it somewhere and it stuck with me! Lol) But in any case, I believe the more people we share our burdens with the more people we have offering prayers for us. I hope and pray you find answers soon and can receive the treatment that helps you.

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Hi @ginak, I love that saying of “sharing burdens”…it does certainly “lighten” the heaviness of our burdens when we share it with others. I also believe in the power of prayer, how ever that may look like for people of all religions or without religion. The private school that my daughter attends (on a scholarship) is Quaker & they say, “I hold you in the light”. Like I said I agree with you, the more prayers, the better! Thank you for reframing this idea of me feeling like I’m coming across as having self-pity which holds me back from sharing with others. You have made me feel much better about sharing…thank you!

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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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Hi @colleenyoung, thank you for taking the time to read all of my feelings & validating that “it’s ok”! I felt such heaviness while writing it & I just didn’t have it in me to organize my thoughts & like you said, I felt good to just “dump”. I often (well pretty much always) hold back from expressing my feelings, especially fear. I do this especially with my family because they tell me that they can’t handle the fear themselves. I have a couple of friends I can go to (via phone, or texts since they live far away). So, pretty much I only speak of my feelings when I’m in my therapy sessions. Therapy is such an awesome, safe place to feel my feelings & know that it’s ok…she is a great therapist that I’ve been going to for a long time so she knows me so well! I see her 2 days a week. It finally dawned on me to try & reach out to you all on Connect. When I’m depressed & scared, I withdrawal. I’m trying to get past that, fight that, by reaching out to you all. So thank you for your responses. It means SO much, really!!! It’s also really helpful to hear your responses/educated opinion on waiting to treat until it’s seen on a CT Scan. Thank you, @colleenyoung

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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!

Jump to this post

Oh, sweetest Katherine, you are so dear!!! You hold a special place in my heart! While at Mayo, I went into respiratory failure & ended up in the hospital. I was on my on in the hospital, scared & alone. I was then discharged & continued with the Mayo expierence. It was such a trying visit & I was simply overwhelmed! I learned SO much about what’s going on with me & wow, it’s craziness! How could do much be wrong!?!?! And how do I manage all of this?!? I need so many interventions! I’m apparently at a great risk to have a coronary event in the near future. I’m apprently the “perfect storm” as they phrased it. I didn’t know that I had the dystolic dysfunction, stage 1 heart failure. I learmed I have bronchomalacia in addition to the bronchiectasis along with retaining carbon dioxide & alveoli hypoventilation. Of course I have the hypogammaglobulinanemia which means I’m deficient in IgG for which IVIG (IV infusion of antibodies) every two weeks.

It’s too much for me to handle! Then since coming home, for whatever unkown reason, my previously controlled blood sugar, now is uncontrolled even with high doses of insulin! I’m talking about my fasting blood sugar this morning 279 today!!!! And while at Mayo, we discovered that my pulse ox has been as low as 71% which meant is still means that I need to be wearing oxygen! I HATE wearing oxygen! Everybody looks at you, wondering what’s wrong with me, especially since I’m s relatively young age (42). It’s just a huge sign to me, that I’m “sick”! I don’t want to be “sick”!!!!!

I just haven’t had it in me to share my feelings or what all is wrong with anyone…I’m just now feeling the strength to share with others including my own family & friends. Ben & I started marriage counseling so that I could talk about my fear in a safe place with my husband with the help of a therapist.

I truly apologize @katemn, for being so distant & leaving you to wonder & worry. It’s not right of me to do this to my friends. I’m trying to compose a summary of all that I learned at Mayo to post on my gofundme update page. So many people helped me to get to Mayo & I feel terrible that I haven’t let them know the result of the trip. I’m working on it now. So much came from the trip & it’s SO much to explain it all… I know it’s not necessary but there are many that genuinely care & they want to know because they care.

Thank you, Katherine for being so genuine & caring! And thank you for asking others for help to support me! You are great!!!! Much love, Jen

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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My heart goes out to you. What you are doing seems to be keeping you alive, so that’s one positive note. Keep doctoring and seek patience. shalom!
DAvid

REPLY

@jentaylor Hello Jen,

I can hear the discouragement in your posting, and I’m sorry for your situation. It’s one thing to ‘maybe’ have a diagnosis, or when several doctors disagree … but it’s quite another when you feel really crummy for such a long time! You have my sympathies.

Reinforced at the NTM conference last week was this — that doctors don’t agree on things, especially on NTM (of which MAC is only one) – they don’t agree on whether to treat, or how to treat, or even how to diagnosis it. Heck, there isn’t even a CDC or NIH standard ‘approved’ drug for treatment! We are still using the ‘old’ TB drugs to treat NTM/MAC. I tell myself to remember this the ‘practice’ of medicine, after all. That’s one thing that makes this disease so confusing and frustrating to patients. There’s not one set of universal standards. Or even two sets!

I can only offer you my sympathies and offer what I would do if I were you in regard to NTM/MAC. Since you’ve seen your local pulmonologist as well as Dr. Askamit, I would follow his lead. Dr. Askamit doesn’t feel its right to start on the drugs, probably because your CAT scan doesn’t show evidence of NTM/MAC. Unless you are really ill from NTM/MAC and have manifestations of it, then I’d follow his advice and keep going for follow-up care to see what’s happening to your lungs. The drugs are very powerful, for some people the treatment is worse than the disease. And it’s unknown what the drugs will do to our bodies long-term or will we become resistant to them. NTM/MAC does go away in some people without treatment. That’s the head-scratcher. Why? Lots of things to think about.

Another thought … opening up your lungs and strengthening them is something each patient should try to do. That’s something I wasn’t real keen to hear 10 years ago when finally diagnosed. I’m a software developer, working at a computer 10-12 hrs a day, and I wasn’t much of an exerciser but painfully began walking every day. Little steps at first. It was difficult since I couldn’t walk a block due to lack of lung function. Your weight may be an impediment, at least at first — but ask your doctor if you could try to walk one block each day and build up your lungs. Then over time try to increase the distance and time. If you keep with it, it will make you feel better. Women on this blog with NTM/MAC will attest to that!

Best wishes to you. Let us know how you are doing over the next weeks, as you go forward.
Paula

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@pamelasc1

This is a question for Linda who wrote: “but had to stop from last Nov through Feb of this year when my MAC was so bad. Once I was on my meds for a couple of months and felt I could breathe again”. What were the meds you were on for those few months and when you wrote that your MAC was bad, what were your symptoms? It is good to know that one can control the MAC by taking meds for only two months, versus going back to the 18 month regimen of the Big Three meds… I just finished up with the 18 month regimen and so far so good. Pamela

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@josephene, you write you’ve “been on 3 big meds for 12mths with no radiology improvement..anyone else experienced this?” Yes, me. This is not unusual, rather quite common I think. Were you ill 12 months ago before going on the drugs? And how do you feel now compared to 12 months ago? That’s what doctors will also consider.

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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@lindam272, @windwalker & others —

RE the benefits of exercise … 10 years ago when my pulmonolgist told me to start walking and doing Pilates or Yoga each week, I thought he was crazy. I could barely do this ‘6 minute walk’ with a nurse each week I saw him. I was so into ‘mental exercise’ — I developed computer software all day — and now physical exercise? And getting into the ‘tight’ pants and tops to exercise made me laugh! Hah, not me! Boy did I learn from that! I started slowly at my Employer’s employee wellness class with 2 older people (our other co-workers in the class were in their 20s or 30s). We laughed and laughed since it was obvious we struggled, but didn’t care. Today I try to take a Pilates and/or Yoga class 5-6 days a week (sometimes both in the same day), and walk each day. It has made a HUGE difference to my lungs (only one lung is working well now) and to my overall well being.

Yippee to @windwalker for doing cardio each week!! What an accomplishment! And it’s fabulous that @lindam272 has joined the Y with it’s Silver Sneakers. This is the part of managing and getting well having NTM/MAC that doctors’ cannot charge an office visit for, or that drugs companies don’t get paid for. This is the part we can do for ourselves.

Blessings to all. The benefits of exercise . . . keep moving, as much as each of us is able to do!
Paula

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Many of the people posting on here seem to know more that some of the doctors I have encountered. Can anyone share what evidence of MAC/MAI on a cat scan includes? Is it nodules, ground glasz opacities, tree in bud (all things on my report but not sure if that is consistant). I was diagnosed witj MAI through lavage washings but i don’t know if it is the reason I am having issues or whether whatever issues i have been having made me vulnerable to the MAI …

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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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Thanks, David!

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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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Jen, you know you have a special place in my heart .. that I have followed your journey from the beginning .. was SO concerned when I didn’t hear from you after your last posts. You KNOW you are now in the right place .. that you have returned home to Connect at last .. that our caring Community will be there for you on the rest of your journey just as it was in the past. You just have to stick with us now that you have returned!

I found Ben by following your Facebook page .. Jen .. he sounds like one heck of a guy .. you give him a hug for me and tell him I think he is just great! From Momma .. couples counseling is an EXCELLENT idea .. but he is a really good Dad .. AND he has stuck with you though “sickness and in health” .. give the guy a break?! One piece of advice I would give you .. my husband and I say “Our kids love us .. our grandkids love us .. but at 3 in the morning .. it is just you and ME Babe!”. ALL marriages have their ups and downs .. you just have to tough it out in the downs .. ESPECIALLY ages 45 to 55 .. but in the end .. NOBODY will share all the memories with you like Ben will .. just how cute your daughter was when she was waddling around in diapers at age 2 .. just think of all the memories you have shared .. don’t lose all those years. Give each other a break .. count to ten .. go back and remember WHY you fell in love with each other .. reach back to the happy times. You CAN find them again. I’m rooting for you!

Jen, I have read through the various posts from our Members .. I really can’t add any additional words of wisdom .. merely second their good advice. ESPECIALLY the advice that TOMORROW you make the DEFINITE decision to grab that oxygen tank and walk just ONE block! Then add ¼ block as you are able! Jen, this is coming from MOMMA! Who gives a flying leap if ANYONE looks at you funny with you walking with your oxygen tank!! Jen, WHO DO YOU ALLOW TO GIVE YOU OPINIONS OF YOURSELF????? YOU are the ONLY one who KNOWS WHO YOU ARE!! Phooey on anyone/everyone who give you a funny look .. who gives a darn! ALL you should be concentrating on is getting healthier .. increasing your lung function!! THAT IS ALL! By darn if @windwalker, Terri with her lungs waiting for a double heart transplant .. goes to the gym with HER oxygen tank .. who are you and me to worry about “looks”?! NOPE!!

Also Jen, have you purchased and are USING? If not .. GET IT!!: from my File Cabinet
Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com https://www.youtube.com/watch?v=p7FAFY4PsQY PURCHASE: https://smile.amazon.com/Expand-A-Lung-Breathing-Fitness-Exerciser/dp/B00JWTRA5I/ref=sr_1_1_a_it?s=digital-text&ie=UTF8&qid=1496000894&sr=8-1&keywords=Expand-A-Lung+Breathing+Fitness+Exerciser Read the reviews and how to use at https://www.amazon.com/Expand-A-Lung-Breathing-Fitness-Exerciser/dp/B00JWTRA5I
https://bronchiectasisnewstoday.com/2017/01/10/aerobika-device-shows-promise-treating-bronchiectasis-copd-exacerbations/?utm_source=BRO+E-mail+List&utm_campaign=198910888f-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-198910888f-71558577
Jen, sending you a Big Hug and glad to see you back! Katherine

Liked by chinasmom

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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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Oh @jentaylor what alot for you to get your head around,I really feel for you. You have already proved the doctors wrong by 8 years and if you can get your head in the right place you can carry on doing so. Dont know if you have tried meditation, but it is really amazing and can help you with this. I have heard that Dr Askamat is a great doctor, but maby you he needs to send you for a up to date ct scan now for him to review rather thasn going by past scans. I wish there were doctors who specialised in everything that could sort it all out for you at once. Please take care and keep in touch, sending you hugs and well wishes.

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@jennifernicole

Many of the people posting on here seem to know more that some of the doctors I have encountered. Can anyone share what evidence of MAC/MAI on a cat scan includes? Is it nodules, ground glasz opacities, tree in bud (all things on my report but not sure if that is consistant). I was diagnosed witj MAI through lavage washings but i don’t know if it is the reason I am having issues or whether whatever issues i have been having made me vulnerable to the MAI …

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@jennifernicole, you asked “Can anyone share what evidence of MAC/MAI on a cat scan includes?”. Evidence of MAC/MAI? A scan is not direct evidence, I believe, since you need tissue/mucous from your lungs to be ‘evidence’.

Here’s my story, when I was diagnosed 9-10 years ago. I had a chest x-ray that was not good, my fabulous young internist immediately sent me for a CAT scan. It too was not good & alarmed her – I had 4 nodules on one lung and a scattering of something in the other; if I recall correctly, several were the size of the first joint on my thumb. Within 3-4 days I was in to see a pulmonologist. We spent an hour talking about me, my lifestyle & uneventful health history, and looking at my CAT scans. He said “I see women like you every day that have scans that look like this, and they have lung cancer.” I was an administrator at a local university, and I think the doctors took that to mean give me all the information I could ever want – also, I asked tons of questions. Based on my lifestyle and unusual symptoms, after an hour of discussion he said it could be 4-5 different things that are showing up in the scans. A few days later, I had a lung biopsy of tissue and mucous from areas of my lung — the only way to determine it was not cancer. The pulmonologist called me that evening to say one specimen was growing bacteria like crazy (a very good sign, we felt); but any malignancy diagnosis would be a few days to come. Since then, over the past 9-10 years, I’ve had one more bronchoscopy and 2 lung lavages (washes). So I believe CAT scans are a diagnostic tool and can show symptoms of something — and after an affirmative diagnosis, CAT scans can measure increase/decrease in size of the nodules or lesions, etc.

Just my 2 cents worth.
Paula

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