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 2, 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 made them decide to test for that? 

 

Aurora Cardiovascular Services/Electrophysiology

146 E Geneva Square

Suite G

Lake Geneva, WI 53147

 

2801 West KK River Parkway

Suite 777

Milwaukee, WI 53215

 

Phone: 262-249-5430/Fax 262-249-5437

 

REPLY
Bill | @waterboy | Jul 2, 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

Somehow, after I was diagnosed with COPD.... I ran across alpha1, found a way to be tested for free.... so I sent in my sample and it came back positive, then had to have a blood draw sent to them to confirm it.

REPLY
robynmar | @robynmar | Jul 2, 2017

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

REPLY
3 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 2, 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 Hi
Robyn. I know that inhaled cipro has been in clinical trials and looks very
promising. It is supposed to be released in the next six-12 months. Not sure,
but you may have to go to somewhere like Stampford to get that trial. - Terri
M.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 2, 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,
you can also ask about the regimen you and I have discussed before at your next
appt.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 2, 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

@waterboy So what does this mean for you? are you learning all that you can
about it?
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 2, 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

@jkiemen As of recent times, all pulmonologists are supposed to test you
for Alpha-1 deficiencency. It is supposed to be protocal.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 2, 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

@jkiemen  Most Drs that I have seen in the last 7 yrs have
tested  me for Alpha-1 or asked me about it. But the results are now in my
records so I don&apos;t have to worry about that anymore.
 

REPLY
luvocean | @luvocean | Jul 2, 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

I wondered about this. I just assumed they just knew from cbc tests or exams.

REPLY
luvocean | @luvocean | Jul 2, 2017
In reply to @lindam272 "Has anyone ever experienced this medicine or the disease as a contributing factor to Eustachian tube..." + (show)
@lindam272

Has anyone ever experienced this medicine or the disease as a contributing factor to Eustachian tube dysfunction? I have that in my right ear so just wondered. Never had a problem until a few months ago. Linda M

Jump to this post

Interesting. I am having a lot of sinus pain, infection and ringing in my ears.

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