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!

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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:
- 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.

Jo Ann K | @jkiemen | Jul 3, 2017
In reply to @katemn "@waterboy, do you have a first name .. more personal. I am answering you on the..." + (show)
@katemn

@waterboy, do you have a first name .. more personal. I am answering you on the MAC/Bronchiectasis Main Page BECAUSE we have quite a few Members with "Alpha1 antitripsyn deficiency" including myself .. I have: ALPHA-1 antirypsin heterozygosity, Z allele. If you use the magnifying glass up above putting in "Alpha antitripsyn" you will be able to find our various members with this issue. I WELCOME your information below .. thank you!

You say "I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own." Why don't you begin a discussion on this yourself under: https://connect.mayoclinic.org/groups/ .. you could contact Colleen Young to see if there is enough interest .. I am not really sure how/if this is possible but worth a shot. Sending you a hug! Katherine
++++++++++++++++++++++++++=

Posted by @waterboy, 52 minutes ago
I am a 67 yr old male with moderate COPD and am also an Alpha1 antitripsyn deficiency patient. Alpha 1 is a genetic disorder that effects the production of an enzyme in your liver that protects your lungs. You can be checked for free. It is somewhat rare, lucky me, 1/2500 people are Alphas. I have completed one study at Mayo in the Mindful Breathing Center concerning home exercising for COPD patients and am in another in the Morgan Stanley building… I strongly suggest you check them out… Pulmonary Research Center centering on Beta Blockers to reduce exacerbations. I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own.

Jump to this post

What site did you find for testing?

 

Jo ANN

 

REPLY
Katherine, Alumni Mentor | @katemn | Jul 3, 2017
In reply to @katemn "@waterboy, do you have a first name .. more personal. I am answering you on the..." + (show)
@katemn

@waterboy, do you have a first name .. more personal. I am answering you on the MAC/Bronchiectasis Main Page BECAUSE we have quite a few Members with "Alpha1 antitripsyn deficiency" including myself .. I have: ALPHA-1 antirypsin heterozygosity, Z allele. If you use the magnifying glass up above putting in "Alpha antitripsyn" you will be able to find our various members with this issue. I WELCOME your information below .. thank you!

You say "I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own." Why don't you begin a discussion on this yourself under: https://connect.mayoclinic.org/groups/ .. you could contact Colleen Young to see if there is enough interest .. I am not really sure how/if this is possible but worth a shot. Sending you a hug! Katherine
++++++++++++++++++++++++++=

Posted by @waterboy, 52 minutes ago
I am a 67 yr old male with moderate COPD and am also an Alpha1 antitripsyn deficiency patient. Alpha 1 is a genetic disorder that effects the production of an enzyme in your liver that protects your lungs. You can be checked for free. It is somewhat rare, lucky me, 1/2500 people are Alphas. I have completed one study at Mayo in the Mindful Breathing Center concerning home exercising for COPD patients and am in another in the Morgan Stanley building… I strongly suggest you check them out… Pulmonary Research Center centering on Beta Blockers to reduce exacerbations. I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own.

Jump to this post

@windwalker, Terri, interesting that most of your doctors TESTED you for Alpha-1 or asked you about it!! In 2007 to about 20l5 my Mayo doctor said ZIP about it .. I WAS THE ONE you said I was genetically Alpha-1 per my 23andMe testing .. BUT he then showed interest! HMMM .. ALL doctors need to get behind this! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jul 3, 2017
In reply to @robynmar "Hi, I'm new to this forum. I was first diagnosed with MAC in 2001 and was..." + (show)
@robynmar

Hi, I'm new to this forum. I was first diagnosed with MAC in 2001 and was treated with the 3 antibiotics and prednisone for a year. I recovered, but now it is back. I had radiation in 1988 for stage 4 breast cancer which pretty much destroyed my left lung. I beat the cancer but the radiation made my lung vulnerable. This year I was first diagnosed with chronic bronchitis, then bronchiectasis, and COPD. I'm still waiting for the lab report for the MAC bacteria. My symptoms are lots of mucous, extreme fatigue, loss of appetite, periodic low fever and chills. I am now 89 years old and trying to learn to live with this. I mostly sleep a lot. The doctor says he won't treat me because of the severity of the antibiotics. Also, I read that a recurrence is very hard to cure. I live close to Stanford, but they seem to be working with Amikacin (antibiotic) which has serious side effects. They have been running clinical trials. I might ask for a referral to them if I thought they could help minimize my condition. I'm hoping that a minor antibiotic might help. Does anyone have any information about someone in my position? The Kaiser doctor says that the MAC won't kill me but pneumonia would. So I am staying close to home. Thanks for any input. Robyn

Jump to this post

@robynmar, Robyn Welcome to our Connec Forum .. so glad you found us! I can only tell you that I did inhaled Amikacin for thirty months for my MAC .. at age about 70 .. did my "Due Diligence" .. got the proper testing and was able to stabilize the mycobacterium. I have now been stabilized since 2014 .. I answered you with a Member's recommendation for a doctor at Stanford .. hope you find that helpful! I would ABSOLUTELY get myself there for a second opinion!! I would recommend you read the past pages of our Forum to educate yourself to our shared MAC disease .. YOU must be your OWN best advocate .. and you cannot do it until/unless you have educated yourself to your options! Read .. then come back to us with any questions you might have .. we are here for you! Hugs to you! Katherine

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | Jul 3, 2017
In reply to @milagro103 "Has anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor..." + (show)
@milagro103

Has anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor have tested my husband they find no disease. The only thing they found was a slow growing bacteria mycobacterium ventiflavum. There is no treatment he is just on oxygen and Cellcept .6liters resting 8 walking 10 excercising. They gave him the TB meds but he became very ill. I wonder if a second opinion at the Mayo Clinic would help.

Jump to this post

Hello @milagro103 - Paula

I don't know about mycobacterium ventiflavum, but there are over 150 subspecies of NTM now.
Here's some info on the disease you ask about.
http://www.wow.com/wiki/Mycobacterium_lentiflavum?s_chn=31&s_pt=aolsem&s_gl=US&s_dto=d&v_t=aolsem
http://www.sciencedirect.com/science/article/pii/S0163445305002549
https://en.wikipedia.org/wiki/Mycobacterium_lentiflavum

REPLY
Patty | @freedom25 | Jul 3, 2017

Hi everyone,I really appreciate all of the info.here. I was just Dx with MAC a week ago. I started meds daily and I assume they are the big three? (Clarithromycin, Rifabutin and Moxifloxacin) I am scared and it's good I found this site. I have COPD/Emphysema (Alpha 1 neg). I was hospitalized for 6 days for pneumonia in April and have thought I was getting better. They did a bronchoscopy and it took a long time for the culture to come back. I saw my Dr. for a follow up and we made an appointment with an ID two days later. Started the meds right away. (I tend to trust Dr.s and she is in contact with my Pulm. Dr. I trust him as he has been treating me for years). I'm not one who can get the sputum out for the most part. When I do it is clear with a spot of yellow ( the same as others have reported). The next day after starting the meds. I vomited and there was blood, the next day again the same thing just not as much.I called the Dr. and she saw me the next day. She changed the way I take them and added Zofran and she said to try that and call her b/c she may need to adjust the dosage. It helped, but, my appetite is terrible and I have already lost weight over the past year. I am an alarming 86 pounds (now mind you I have always been thin, weighing right around 100 lbs). Today I have pain in my lower back and a fever. (worried about my kidneys though I have never had issues with them or any other health issues). I am 52 years old. I am worried in general I went from taking no pills to feel like that is all I do now is take meds. In general I feel worse since I started the meds. Once I get further along with Tx. I will be more positive I'm sure or at least back to living my life at least I hope. Right now they want me to rest. I don't know what that means as I am one who is always on the go, was working 2 jobs prior to this. Now out of work already 3 months and they are saying 3 more. Luckily my job is cooperating for now, been there 12 years yet, I wonder if I will ever get back to it. (I am a Group Home manager of two residences for severe mentally ill adults).
I apologize for this long post, but from reading all the post you might not mind since it's my first time here. Thank you !!! - Patty

REPLY
3 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 3, 2017
In reply to @katemn "@waterboy, do you have a first name .. more personal. I am answering you on the..." + (show)
@katemn

@waterboy, do you have a first name .. more personal. I am answering you on the MAC/Bronchiectasis Main Page BECAUSE we have quite a few Members with "Alpha1 antitripsyn deficiency" including myself .. I have: ALPHA-1 antirypsin heterozygosity, Z allele. If you use the magnifying glass up above putting in "Alpha antitripsyn" you will be able to find our various members with this issue. I WELCOME your information below .. thank you!

You say "I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own." Why don't you begin a discussion on this yourself under: https://connect.mayoclinic.org/groups/ .. you could contact Colleen Young to see if there is enough interest .. I am not really sure how/if this is possible but worth a shot. Sending you a hug! Katherine
++++++++++++++++++++++++++=

Posted by @waterboy, 52 minutes ago
I am a 67 yr old male with moderate COPD and am also an Alpha1 antitripsyn deficiency patient. Alpha 1 is a genetic disorder that effects the production of an enzyme in your liver that protects your lungs. You can be checked for free. It is somewhat rare, lucky me, 1/2500 people are Alphas. I have completed one study at Mayo in the Mindful Breathing Center concerning home exercising for COPD patients and am in another in the Morgan Stanley building… I strongly suggest you check them out… Pulmonary Research Center centering on Beta Blockers to reduce exacerbations. I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own.

Jump to this post

@katemn
They really do.
 

REPLY
irene5 Irene Estes | @irene5 | Jul 3, 2017
In reply to @freedom25 "Hi everyone,I really appreciate all of the info.here. I was just Dx with MAC a week..." + (show)
@freedom25

Hi everyone,I really appreciate all of the info.here. I was just Dx with MAC a week ago. I started meds daily and I assume they are the big three? (Clarithromycin, Rifabutin and Moxifloxacin) I am scared and it's good I found this site. I have COPD/Emphysema (Alpha 1 neg). I was hospitalized for 6 days for pneumonia in April and have thought I was getting better. They did a bronchoscopy and it took a long time for the culture to come back. I saw my Dr. for a follow up and we made an appointment with an ID two days later. Started the meds right away. (I tend to trust Dr.s and she is in contact with my Pulm. Dr. I trust him as he has been treating me for years). I'm not one who can get the sputum out for the most part. When I do it is clear with a spot of yellow ( the same as others have reported). The next day after starting the meds. I vomited and there was blood, the next day again the same thing just not as much.I called the Dr. and she saw me the next day. She changed the way I take them and added Zofran and she said to try that and call her b/c she may need to adjust the dosage. It helped, but, my appetite is terrible and I have already lost weight over the past year. I am an alarming 86 pounds (now mind you I have always been thin, weighing right around 100 lbs). Today I have pain in my lower back and a fever. (worried about my kidneys though I have never had issues with them or any other health issues). I am 52 years old. I am worried in general I went from taking no pills to feel like that is all I do now is take meds. In general I feel worse since I started the meds. Once I get further along with Tx. I will be more positive I'm sure or at least back to living my life at least I hope. Right now they want me to rest. I don't know what that means as I am one who is always on the go, was working 2 jobs prior to this. Now out of work already 3 months and they are saying 3 more. Luckily my job is cooperating for now, been there 12 years yet, I wonder if I will ever get back to it. (I am a Group Home manager of two residences for severe mentally ill adults).
I apologize for this long post, but from reading all the post you might not mind since it's my first time here. Thank you !!! - Patty

Jump to this post

It is scary! It is alarming (the weight loss)! It is the same for me. But here you will find support, understanding, and a wealth of information.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 3, 2017
In reply to @freedom25 "Hi everyone,I really appreciate all of the info.here. I was just Dx with MAC a week..." + (show)
@freedom25

Hi everyone,I really appreciate all of the info.here. I was just Dx with MAC a week ago. I started meds daily and I assume they are the big three? (Clarithromycin, Rifabutin and Moxifloxacin) I am scared and it's good I found this site. I have COPD/Emphysema (Alpha 1 neg). I was hospitalized for 6 days for pneumonia in April and have thought I was getting better. They did a bronchoscopy and it took a long time for the culture to come back. I saw my Dr. for a follow up and we made an appointment with an ID two days later. Started the meds right away. (I tend to trust Dr.s and she is in contact with my Pulm. Dr. I trust him as he has been treating me for years). I'm not one who can get the sputum out for the most part. When I do it is clear with a spot of yellow ( the same as others have reported). The next day after starting the meds. I vomited and there was blood, the next day again the same thing just not as much.I called the Dr. and she saw me the next day. She changed the way I take them and added Zofran and she said to try that and call her b/c she may need to adjust the dosage. It helped, but, my appetite is terrible and I have already lost weight over the past year. I am an alarming 86 pounds (now mind you I have always been thin, weighing right around 100 lbs). Today I have pain in my lower back and a fever. (worried about my kidneys though I have never had issues with them or any other health issues). I am 52 years old. I am worried in general I went from taking no pills to feel like that is all I do now is take meds. In general I feel worse since I started the meds. Once I get further along with Tx. I will be more positive I'm sure or at least back to living my life at least I hope. Right now they want me to rest. I don't know what that means as I am one who is always on the go, was working 2 jobs prior to this. Now out of work already 3 months and they are saying 3 more. Luckily my job is cooperating for now, been there 12 years yet, I wonder if I will ever get back to it. (I am a Group Home manager of two residences for severe mentally ill adults).
I apologize for this long post, but from reading all the post you might not mind since it's my first time here. Thank you !!! - Patty

Jump to this post

@freedom25 Welcome
to our forum Patty! I think that most of us on this thread has experienced
weight loss from MAC. I dropped from 142 down to 116. I was losing a pound a
week! That is when I knew something was wrong.  I had MAC twice, not much
weight loss with that, but had pseudomonas a. the last infection. That is the
one that caused me to drop lbs. After 9 mos of treatment, I am now up to 128
lbs. I am too tired at the moment to go into my treatment journey and I
don&apos;t want to confuse you with questioning yours. I suggest that you keep
reading backwards through all of our posts and I assure you that you will learn
a lot. In a nutshell, you have to be extremely knowlegible about this disease,
because many of the &apos; BEST &apos; doctors are not. Some seem to be, but still are
not. It is not because they are ignorant, it is because it is complicated
disease. There are lots of variables with each patient. My doctor at the Mayo
does not believe in running straight to the big three drugs upon the newly
diagnosed. He does not believe it to be a one size fits all treatment. So many
doctors think that way. ( I ) believe it is because they are not that
experienced in treating MAC. My doctor was a little horrified that so many first
time first time infections are being immediately treated with three very strong
antibiotics. I have never been on the big three, I am not seeing any difference
in the return rate of the MAC between myself and others taking that big load of
antibiotics. Just food for thought, and all the more reason to do your
homework.  - Terri M.
 

REPLY
Katherine, Alumni Mentor | @katemn | Jul 3, 2017
In reply to @freedom25 "Hi everyone,I really appreciate all of the info.here. I was just Dx with MAC a week..." + (show)
@freedom25

Hi everyone,I really appreciate all of the info.here. I was just Dx with MAC a week ago. I started meds daily and I assume they are the big three? (Clarithromycin, Rifabutin and Moxifloxacin) I am scared and it's good I found this site. I have COPD/Emphysema (Alpha 1 neg). I was hospitalized for 6 days for pneumonia in April and have thought I was getting better. They did a bronchoscopy and it took a long time for the culture to come back. I saw my Dr. for a follow up and we made an appointment with an ID two days later. Started the meds right away. (I tend to trust Dr.s and she is in contact with my Pulm. Dr. I trust him as he has been treating me for years). I'm not one who can get the sputum out for the most part. When I do it is clear with a spot of yellow ( the same as others have reported). The next day after starting the meds. I vomited and there was blood, the next day again the same thing just not as much.I called the Dr. and she saw me the next day. She changed the way I take them and added Zofran and she said to try that and call her b/c she may need to adjust the dosage. It helped, but, my appetite is terrible and I have already lost weight over the past year. I am an alarming 86 pounds (now mind you I have always been thin, weighing right around 100 lbs). Today I have pain in my lower back and a fever. (worried about my kidneys though I have never had issues with them or any other health issues). I am 52 years old. I am worried in general I went from taking no pills to feel like that is all I do now is take meds. In general I feel worse since I started the meds. Once I get further along with Tx. I will be more positive I'm sure or at least back to living my life at least I hope. Right now they want me to rest. I don't know what that means as I am one who is always on the go, was working 2 jobs prior to this. Now out of work already 3 months and they are saying 3 more. Luckily my job is cooperating for now, been there 12 years yet, I wonder if I will ever get back to it. (I am a Group Home manager of two residences for severe mentally ill adults).
I apologize for this long post, but from reading all the post you might not mind since it's my first time here. Thank you !!! - Patty

Jump to this post

@freedom25 Patty, I am REALLY glad you found us! Welcome! It sounds like you have been blessed to have found doctors you feel comfortable with .. AND work well with you! Changing the regimen to meet your needs .. GREAT! Most of us lost weight .. I lost 18% of my body weight .. part of the game. For me a GOOD thing was to start drinking a product called the "Bolthouse Farms Protein Plus Chocolate" .. it had 30grams of protein .. in the refrigerated section of the grocery store .. at $3.69 not cheap but with the most protein and least sugar I felt it was worth it for my health. (Best price I found 6/19 at Walmart $1.94) .. because my appetite just wasn't there .. I drank that!

Patty, you may be new to MAC .. but trust me .. we have ALL been on this journey .. all of us at a different point .. but all on this shared journey .. we are here to help you .. support you in any way we can. We have "been there .. done that". Know how scary it is in the beginning .. BUT have come through that time .. KNOW there is a light at the end of the tunnel. Know what that light is? Knowledge! Knowledge is POWER! Knowledge is learning to advocate for yourself. Knowledge is TAKING BACK your power over your health care! How do you do that? By reading through the past pages of our Forum! Many pages? Phooey .. you will read a book for pleasure .. you won't read the past pages of this Connect Forum to educate yourself to our shared MAC disease?! Yes, of course you will! Then as you read .. feel free to come back with ALL your questions .. we are here for you EVERY step of the way. We know where you are right now .. how you feel .. how tough it is .. BUT we also know where you are going .. AND how you are going to get there!! BECAUSE we HAVE DONE IT!! We will walk this walk with you .. just keep coming back with your questions ,... concerns .. cares. We will be here. Sending you a hug in this tough time! Katherine

REPLY
Patty | @freedom25 | Jul 3, 2017

Thank you for your replies. I have been trying to read a lot not only here, there is conflicting info it seems. The Dr. said they were afraid of my resistance to Zithro and I am allergic to another. My pneumonia encompassed my entire upper right lobe and it still is present on my Ct scan. I will talk to my Pulm again, and continue to read. I live in NJ so anyone who may know a Dr. let me know.
I will consider a second opinion Thanks.

REPLY
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