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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 22, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

Jump to this post

@irene5 I
suffered migrains too pre-menopause. I took a drug called MAXALT, it was a
miracle drug. It would always work inside of 20 minutes.
 

REPLY
jentaylor | @jentaylor | Jun 23, 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

@windwalker Terri M, thanks for saying that! I've been working hard everyday to change my thinking & attidtude surrounding having an illness & what it means to be living with a diagnoses that the physician refer to as "terminal". What does that mean & how does that shape the way I think & how do I move forward & lead a purposeful life despite ANY diagnoses.

The big talk with our dear Katherine really impacted me. I'm trying very hard to re-shape my thinking & not let the illness (of which I have many) define ME. I started Pulmonary Rehab 3 days a week & when I'm there, I wear oxygen to exercise. It is finally getting me to drop some of my own self-conscious, negative self talk that I do when I wear (or don't wear) my oxygen in front of others. It's been empowering & freeing me a little to know that I CAN actually exercise & meet a goal. We started at 11mims on the treadmill & go up 1 min at a time. It doesn't sound like much but it's a challenge for me & boy do I feel good accomplishing it!!! I've gained 25 lbs with this most recent infection & treatment with high doses of prednisone. I'm trying to stop beating myself up over it & move forward, treating my body with kindness & practice my own "due diligence" & treat my body with respect & take better care of it with exercise, mindful, more sensible, & more nutritious eating. I'm by no means great or even that "good" but it's a start, a step in the right direction. I'm trying to empower myself with the great education & great words of wisdom here. I'm trying to be more intentional & trying to take responsibility for my thinking/behavior/self-talk/inner dialogue. One step at a time, one day at a time. The only thing getting in the way of me, is myself! It's so true! Thanks for mentioning it Terri M!
Best, Jen

REPLY
jentaylor | @jentaylor | Jun 23, 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.

Jump to this post

@windwalker Terri M, I'm glad you guys are bring this up... my instruction from Mayo & in coordination with my home PCP & Pulm, was to do Saline neb AM & PM. Folllowed by a dueo neb (Xopenoex & Ipatropium Bromide) AM & PM but ADD a MID-DAY one with a dueo neb followed by Budesonide. (That comes out to almost 1 1/2 hr - 2 hours of time doing nebs per day!) My local pulm Dr (who really has NO clue with what to do for me!!!!!!) said to me at my the last appointment, "if you don't clear mucg mucous with the nebs, stop doing them". I since then have not been diligent to sticking with the prescribed treatment. After reading these posts, I'm going to re-start the treatment regime. I also used to spend 1 hour a day with the Smart Vest but it really didn't help loosen up/mobilize any secretions for me so I stopped (Dr aware).
Best, Jen

REPLY
tdrell | @tdrell | Jun 23, 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

Boomerexpert....most interesting re the biopsy showing the RA when blood tests did not.....also that your RA is in tendons and connective tissues not joints!! what type of Dr figured this out? tdrell

REPLY
tdrell | @tdrell | Jun 23, 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

Cindyrnc, even though i retired from full time teaching job 11 years ago, I vividly remember the high level of stress ( I loved it but it was total stress on my body) NO wonder our immune systems are reacting....even years later in my case.Not sure what would have happened had we not had summers off to do some recharging. Tdrell

REPLY
tdrell | @tdrell | Jun 23, 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

Windwalker....whereas I have had aches and pains in various joints over the years, never symetrical which I have been feeling these past weeks!! I am allergic to all NSAIDS so tyelenol is the only thing to take and has no effect....hands are worst....will start with new hand Dr in July cause having numbness etc no doubt carpal tunnel and or ganglion which i have hx of...arrgh tdrell

REPLY
Katherine, Alumni Mentor | @katemn | Jun 23, 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

@jentaylor, Jen, I am SO proud of you! "Mama Bear Katherine"!

REPLY
unicorn | @unicorn | Jun 23, 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.

Jump to this post

Hi I am doing saline and albuterol nebulizer, starting today. But my doc said only have to do 20 minutes, then exercise half hour. I was so encouraged reading your (windwalker) about improved lung function. Do you have albuteral with saline?

REPLY
Cindy Courtney | @cindyrnc | Jun 23, 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

Tdrell,

Thank you so much for your encouraging words.

Cindy

 

 

REPLY
ling123 | @ling123 | Jun 23, 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

Oh my, @contentandwell. If you are taking immunosuppressants, it really can be a bit worrisome for infections such as MAC. I'm so sorry that you are having to deal with so much. It's so unfortunate and unfair that we need meds to take care of our ailments only to find out that they may be the cause of us catching something else. It's a difficult path that you and some of the others on this site are on. That's why it is very important that we must be mentally and emotionally strong so we can face and try to deal with the lousy hand that we are dealt with. I hope you'll find comfort, encouragement and helpful information from some of the people here who have walked in your shoes and share your experience. Take care.

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