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.

boomerexpert | @boomerexpert | Jun 26, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

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If this helps...I was a business owner and local radio personality when RA got so bad I had to go on disability and a forced retirement...and it took 3 years to finally get disability...I understand the transition and the loss of identity, but decided early on that my work is not all I am...my training, intelligence, and personality are no different. I joined groups of like-minded people on issues/areas of interest to me, and am thriving. You will, too!

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jentaylor | @jentaylor | Jun 26, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

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@jkiemen Hi, Jo Ann & welcome! You have found a fantastic group!!! ~Jen 🙂

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Jo Ann K | @jkiemen | Jun 26, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

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I am glad I found it. I have already been learning allot from the posts.

 

I am pretty scared right now because I feel helpless. As a nurse, I spend allot of time helping people but feel I  am not doing any thing to help myself. Just

waiting and watching.

I am glad I  found the group.

Jo Ann

 

REPLY
Katherine, Alumni Mentor | @katemn | Jun 26, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

@jkiemen .. Jo Ann .. PLEASE do not be so afraid! We ALL have been down this road .. we will be with you hand in hand now .. throughout this journey of yours .. our SHARED journey .. we have ALL been down this SAME road as you have now started. We ALL were scared like you are right now. BUT you will find IF .. as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side.

Jo Ann, what is REALLY important .. the reason you feel "helpless" right now is BECAUSE of your lack of knowledge about our shared disease. That is WHY it is SO good you have found us .. AND why you must read the past pages. Yes, some of it is redundant .. BUT there is SO much good information there. AND what you will absolutely find .. I PROMISE you .. is LOSING that fear .. that sense of helplessness. Why? BECAUSE "Knowledge is Power" as we say here .. PLUS you will absolutely learn HOW to be your OWN best advocate!

Please do keep coming back .. ask any questions you have .. we will be here for you .. you will find really kind supportive people here who will support you through this journey. Sending you a Big Hug in this tough time. Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jun 26, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

@jkiemen, Jo Ann, since you are new to Connect .. Dr Aksamit is an internationally known expert on MAC/Bronchiectasis at Mayo Clinic, Rochester MN .. so I thought I would answer you from my Trusty File Cabinet! Hugs to You! Katherine

ANTIBIOTIC .. TREAT OR NOT TREAT
Dr. Aksamit and have since 2007 .. from working with him I get a strong sense that the decision to start or NOT start antibiotic for a doctor is like putting a BIG puzzle together .. the components are CHANGES IN: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. my responses to his VARIOUS medical questions. He then puts it all together and decides if I need to come back in 3 mos .. 6 mos .. 12 mos. It ALL depends on the changes .. ie progression of the disease .. and ONLY the doctor can put that puzzle together! But THAT is the importance of proper frequency of follow up appointments .. the mycobacterium is a sneaky critter that needs to be watched and followed!

REPLY
Katherine, Alumni Mentor | @katemn | Jun 26, 2017
In reply to @katemn "@windwalker, Terri I am answering you on the Main Forum because the info on your salt..." + (show)
@katemn

@windwalker, Terri I am answering you on the Main Forum because the info on your salt treatment is REALLY good info to have on our Main Page .. PLUS I am just SOOOO excited for you!! YEAH!! You are SUCH a trooper .. one of my personal heros with your oxygen tank at the gym etc!! You absolutely deserve every single good thing that happens for you!! I am so very proud of you!! You go girl!! I am sending you one BIG hug! Katherine

++++++++++++++++++++++++++++++++++++++++++++

update on my recent Mayo visit.
Posted by @windwalker, 5 minutes ago
Hello! I left my Mayo visit on Tuesday on cloud nine. I found out that I had raised my lung function to 44%, up from 40%. My Dr was totally AMAZED since I suffer from a progressive disease. We figured it was due to the antibiotic and salt treatment regimen and my cardio classes. He said that 4% doesn’t sound like much, but 4% in the other direction (down) starts to put me in the lung transplant category. Mainly because it would mean I am still steadily progressing downward. I cannot tell you how disheartening it has been; to go to my check-ups every six months and be told that I am consistently losing lung function. I had said to my husband when I joined the gym six months ago that I was going to amaze my doctor, and I DID!

I asked about the new drugs that are in trials right now, and he said he expects them to be approved and out within six months to a year Hooray!!! I do know that the inhaled Cipro is one of them. I forgot the name of the other, but it is one that was mentioned at the NTM convention. He said that staying on the salt treatments is critical to keep good lung hygiene. Those of you doing this, stay with it. Those of you who are not, ask your dr to prescribe it. Hope everybody is doing well. Hugs – Terri M.

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@jkiemen, Jo Ann, get started reading the back pages .. many of your questions will be answered .. a WEALTH of Knowledge is at your fingertips .. as you gain knowledge .. you will gain in confidence .. get started! You can't get to college until you have gone through K-12 .. we have all been on your journey .. together! A good use of your time. Hugs! Katherine

In terms of nebulizing .. From My File Cabinet:

REPLY
Katherine, Alumni Mentor | @katemn | Jun 26, 2017
In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)
@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

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@windwalker Terri, the opinion of ONE doctor re: colonizing:
One colony certainly suggests very little MAC in the sputum. When the lab says "few" it usually indicates 2-10 colonies. I did not ask her what "Many" meant! Someone should ask the same thing of THEIR doctor: One colony/Few/Many .. what is THEIR definition. It would be interesting to see what different doctors say!

By the way .. most recent sputum culture box I got for mailing in from Mayo Clinic, Rochester MN had the check option for:
3 times; EACH DAY FOR 3 DAYS, at least 1 teaspoon each day

INTERESTING! You said at the 2017 Conference this was going to be the "new Gold Standard" .. Hmmm ,, maybe Mayo has already started it??! Hugs to all! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jun 26, 2017
In reply to @unicorn "Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably..." + (show)
@unicorn

Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably had it since the 70's. I've taken the meds for a few years, but disease always comes back, and the meds are barely tolerable now. Went to new doc at Mass. General who put me on a nebulizer breathing salt water vapor and albuterol, instead of taking meds. I think it just causes all the mucus to come up so one is less prone to infection. i actually haven't started it yet. i'vebeen off
pills for 5 months and am coughing up blood again. Seriously, so scary I just want a death pill, who wants to live like this?? I am 70 so I am sure that is a factor. xo hope all doing better!

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@unicorn, So glad you're here Christa .. keep us posted! BUT keep in mind those darn mycobacteria critters do NOT run away .. keep up with your check ups with a GOOD Infectious Disease doctor .. we're here for you! Hugs to you! Katherine

REPLY
unicorn | @unicorn | Jun 26, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

Hi Jo ann, I know, super scary, but it has happened to me 5 times, twice bad, and it always stops.

REPLY
unicorn | @unicorn | Jun 26, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

Also, If you have MAC, I don't think levoquin helps. They see bloody caugh as an infection but it is probably the MAC colony getting too close to a capillary and weakening and bursting it. Just make sure(and I know you know this) get the blood out! so no clotting.

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