1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal "file cabinet" on MAC/MAI!  Go to it!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Katherine, Alumni Mentor | @katemn | Jan 24, 2017
In reply to @ginak "Thank you Terri, I'm going to check those out. I'll also continue to read through these..." + (show)
@ginak

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

Jump to this post

@windwalker .. Terri, I am so sad for you I could just cry .. it is just so wrong. But what can we do? Just deal with what life hands us .. what is .. IS .. as the kids say 'Sh..t happens'. But what a rip!! BAD doctors .. genetic issues .. doing the best we can at the time .. rough. I'm just glad you are here now among us who will be here for you .. helping you along the way .. supporting you in any way we can. Just wish you didn't have to be .. but we are here. Hugs Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 24, 2017
In reply to @ginak "Thank you Terri, I'm going to check those out. I'll also continue to read through these..." + (show)
@ginak

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

Jump to this post

@windwalker .. Terri, so sad, we all do what we think is best at the time .. but so sad that you are not looking at a lung transplant because of the damage done to your lungs. Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 24, 2017
In reply to @ginak "Thank you Terri, I'm going to check those out. I'll also continue to read through these..." + (show)
@ginak

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

Jump to this post

@irene5 Irene .. "And what we don't know to ask we don't ask!! " THAT IS SO TRUE!!!!!! I love the saying "When we know better .. we do better" .. and now Terri is living with the consequences of a lung transplant because of lousy doctors!! Makes me SOOOO mad! But we can all now be there for @windwalker, Terri as she fights this thing! Hugs, Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 24, 2017
In reply to @katemn "@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you..." + (show)
@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to "private message" .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said 'The whole is greater than the sum of its parts.' .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

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@windwalker, Terri, the report I was referring to .. the gene I have .. interesting that BOTH you and I have it .. AND that Dr. Aksamit was interested! :
Alpha-1 Antitrypsin Deficiency The alpha-1 antitrypsin (AAT) protein protects the body, especially fragile lung tissues, from the damaging effects of a powerful enzyme called neutrophil elastase that is released from white blood cells. In AAT deficiency, a genetic mutation reduces levels of the protective protein in the bloodstream. AAT deficiency can lead to chronic obstructive pulmonary disease (COPD), specifically emphysema, and liver disease. Smoking, which can inhibit what little AAT protein an affected person does have, increases the risk of lung disease.

..Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 24, 2017
In reply to @katemn "@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you..." + (show)
@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to "private message" .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said 'The whole is greater than the sum of its parts.' .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

Jump to this post

@windwalker, Terri, I commend you .. ONLY through research at the "Big Box' medical institutes will there be established a LINK between MAC and genes!! By sharing your journey with MAYO Clinic .. they ABSOLUTELY CAN learn from you for the benefit of ALL of us with MAC .. and all other lung issues .. thank you! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 24, 2017
In reply to @katemn "@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our..." + (show)
@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit "Reply" to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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@pamelasc1, Pamela this is REALLY a question for your doctor! I have really been on very different routines .. from monthly when I was on the antibiotics to quarterly .. to now only when I see Dr. Aksamit. Really across the board .. that is why you should direct this to your doctor .. it will really depend on their judgment. Hope this helps! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 24, 2017
In reply to @katemn "@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our..." + (show)
@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit "Reply" to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

Jump to this post

@jillnc .. Jill, this is ALL about 'due diligence' and being your OWN best advocate! I personally would NOT feel comfortable with 'said only if I felt the symptoms again. ' Personally I would upon ending antibiotic treatment request a 6 month follow up appointment with a sputum culture and Xray .. IF that still showed me as being 'stable' .. then I'd be fine with another 6 month OR maybe even 12 month follow up .. BUT merely ME deciding to play doctor and making treatment decisions!! No way!! These mycobacterium critters are sneaky buggers .. and we do NOT want to end up like Terri needing a lung transplant because doctors did NOT do their 'due diligence' .. SORRY .. but unfortunately we as patients must do our OWN 'due diligence' at times .. it is OUR OWN bodies .. and NOBODY cares about our bodies as much as we do! Sorry if I sound a bit preachy .. but I've just seen too much .. heard too much NOT to be an advocate! Hope I'm not stepping on any toes! Hugs! Katherine

REPLY
jillnc | @jillnc | Jan 24, 2017
In reply to @katemn "@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our..." + (show)
@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit "Reply" to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

Jump to this post

No toes damaged here 🙂 thank you for your opinion and you are correct about not wanting to have a lung transplant. I also have a restrictive lung disease I'm dealing with as well from sjogren's syndrome so my lungs are really taking a hit this last year. Thankfully there are meds available and the MAC ones appear to be working and just started one for the lung disease so we will see. I'm thinking someone will always be looking at my lungs in one way or another. Take care.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 24, 2017
In reply to @ginak "Thank you Terri, I'm going to check those out. I'll also continue to read through these..." + (show)
@ginak

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

Jump to this post

<br><br><br><br><br>I am trying my best to not ever need that transplant. I have made a lot of <br>lifestyle changes. Plus, I try to stay current on medical info too. My journey <br>isn't sad to me anymore, I have gone through the steps and grieved the loss <br>of  2/3 of my lungs, if you met me, you'd have no idea I even had health <br>issues. I still go like a bat out of hell sometimes. (but then I have to <br>rest for two days LOL!)<br> <br><br>

REPLY
Katherine, Alumni Mentor | @katemn | Jan 24, 2017
In reply to @ginak "Thank you Terri, I'm going to check those out. I'll also continue to read through these..." + (show)
@ginak

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

Jump to this post

@windwalker, Terry, LOVE your attitude .. just can't keep that girl down!! Hugs to you! Katherine

REPLY
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