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.

Katherine, Alumni Mentor | @katemn | Jul 6, 2017
In reply to @lindam272 "So I called my doctor's office and said that I wanted a chest xray done. It's..." + (show)
@lindam272

So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M

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@unicorn .. Christa this is JUST me .. but if a member is deciding between purchasing an Acapella OR an Aerobika .. I would vote for the Aerobika EVERY time .. it is SOOO effective at getting up the mucus .. so much more than the Acapella. I have put on our Forum a resource for about $60 that I have had good luck with twice. This is just my opinion and experience. Hugs to all! Katherine

REPLY
ling123 | @ling123 | Jul 6, 2017
In reply to @imeehaigt "Just last Sunday I did exercised at home and did my daily deep breathing excercise. As..." + (show)
@imeehaigt

Just last Sunday I did exercised at home and did my daily deep breathing excercise. As Ive said before its been over a month that I stopped producing sticky phlegm since I started to excercise everyday. When I cleared my lungs and tried to expel sputum I noticed a blood in my sputum I got alarmed again and was thinking of taking anti biotics. I am pretty sure that I dont have lung infection since I can always feel if there is an infection I usally smell something different or have difficulty breathing. There is a possibility that this only happened because I forced to cough. So decided to stay calm and observe it I did not take antibiotics, instead I continued to take 1 gloves or garlic and drink fresh aloe vera. This is an experiment lol I dont want to use antibiotics if it is not necessary. So far im still feeling good and no blood now in my sputum. I will let you know if what will happen next. I know this is kinda risky but my body and mind is telling that I dont need those meds this time. Happy 4th to everyone!

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I agree with Katherine. I drink a lot of water all day long but still have sticky phlegm. We do need to drink plenty of water but sticky phlegm is the name of the game for sure. I've had it for over 20 years. Drive me crazy but manage to live with it.

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Katherine, Alumni Mentor | @katemn | Jul 6, 2017
In reply to @lindam272 "So I called my doctor's office and said that I wanted a chest xray done. It's..." + (show)
@lindam272

So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M

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@unicorn .. Christa good advice from your doctor! But personally I would recommend the Aerobika over the Acapella for being more effective at getting the sticky mucous UP and out of the lungs .. just my personal experience and opinion. I put info on getting the Aerobika for about $60 on our Forum. Hugs! Katherine

REPLY
JK | @contentandwell | Jul 6, 2017
In reply to @imeehaigt "Just last Sunday I did exercised at home and did my daily deep breathing excercise. As..." + (show)
@imeehaigt

Just last Sunday I did exercised at home and did my daily deep breathing excercise. As Ive said before its been over a month that I stopped producing sticky phlegm since I started to excercise everyday. When I cleared my lungs and tried to expel sputum I noticed a blood in my sputum I got alarmed again and was thinking of taking anti biotics. I am pretty sure that I dont have lung infection since I can always feel if there is an infection I usally smell something different or have difficulty breathing. There is a possibility that this only happened because I forced to cough. So decided to stay calm and observe it I did not take antibiotics, instead I continued to take 1 gloves or garlic and drink fresh aloe vera. This is an experiment lol I dont want to use antibiotics if it is not necessary. So far im still feeling good and no blood now in my sputum. I will let you know if what will happen next. I know this is kinda risky but my body and mind is telling that I dont need those meds this time. Happy 4th to everyone!

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@windwalker Terri, neither my husband or I care for much garlic, nor do our closest friends. My husband is of Italian heritage and his parents didn't use garlic either! People have this impression that Italians eat a lot of garlic but when we have been in Italy none of the restaurants smelled heavily of garlic like many Italian restaurants do here. There are some we have walked into here and walked right back out of because the smell immediately assaulted us. I do actually like some garlic, I mainly do not like that for about three days after eating I feel like it's coming out of my pores.
JK

REPLY
imeehaigt | @imeehaigt | Jul 6, 2017
In reply to @imeehaigt "Just last Sunday I did exercised at home and did my daily deep breathing excercise. As..." + (show)
@imeehaigt

Just last Sunday I did exercised at home and did my daily deep breathing excercise. As Ive said before its been over a month that I stopped producing sticky phlegm since I started to excercise everyday. When I cleared my lungs and tried to expel sputum I noticed a blood in my sputum I got alarmed again and was thinking of taking anti biotics. I am pretty sure that I dont have lung infection since I can always feel if there is an infection I usally smell something different or have difficulty breathing. There is a possibility that this only happened because I forced to cough. So decided to stay calm and observe it I did not take antibiotics, instead I continued to take 1 gloves or garlic and drink fresh aloe vera. This is an experiment lol I dont want to use antibiotics if it is not necessary. So far im still feeling good and no blood now in my sputum. I will let you know if what will happen next. I know this is kinda risky but my body and mind is telling that I dont need those meds this time. Happy 4th to everyone!

Jump to this post

Thanks @windwalker i usually dont chew it i just pinch it and leave it for about 10 to 15 minutes and swallow it like capsule. I usally take it as soon as I wake up in the morning. Its been a year that i did not take antibiotics and whenever I feel like having sore throught I take it 2x a day.

REPLY
imeehaigt | @imeehaigt | Jul 6, 2017
In reply to @imeehaigt "Just last Sunday I did exercised at home and did my daily deep breathing excercise. As..." + (show)
@imeehaigt

Just last Sunday I did exercised at home and did my daily deep breathing excercise. As Ive said before its been over a month that I stopped producing sticky phlegm since I started to excercise everyday. When I cleared my lungs and tried to expel sputum I noticed a blood in my sputum I got alarmed again and was thinking of taking anti biotics. I am pretty sure that I dont have lung infection since I can always feel if there is an infection I usally smell something different or have difficulty breathing. There is a possibility that this only happened because I forced to cough. So decided to stay calm and observe it I did not take antibiotics, instead I continued to take 1 gloves or garlic and drink fresh aloe vera. This is an experiment lol I dont want to use antibiotics if it is not necessary. So far im still feeling good and no blood now in my sputum. I will let you know if what will happen next. I know this is kinda risky but my body and mind is telling that I dont need those meds this time. Happy 4th to everyone!

Jump to this post

I agree the smell is horrible thats why i dont chew it and make sure to brush and gargle with mouthwash. Also im worried too that my sweat will smell like garlic lol. Im just thinking of the benefits that I get whenever I take it.

REPLY
unicorn | @unicorn | Jul 6, 2017
In reply to @lindam272 "So I called my doctor's office and said that I wanted a chest xray done. It's..." + (show)
@lindam272

So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M

Jump to this post

totally agree, my acapella does nothing

REPLY
JK | @contentandwell | Jul 6, 2017
In reply to @imeehaigt "Just last Sunday I did exercised at home and did my daily deep breathing excercise. As..." + (show)
@imeehaigt

Just last Sunday I did exercised at home and did my daily deep breathing excercise. As Ive said before its been over a month that I stopped producing sticky phlegm since I started to excercise everyday. When I cleared my lungs and tried to expel sputum I noticed a blood in my sputum I got alarmed again and was thinking of taking anti biotics. I am pretty sure that I dont have lung infection since I can always feel if there is an infection I usally smell something different or have difficulty breathing. There is a possibility that this only happened because I forced to cough. So decided to stay calm and observe it I did not take antibiotics, instead I continued to take 1 gloves or garlic and drink fresh aloe vera. This is an experiment lol I dont want to use antibiotics if it is not necessary. So far im still feeling good and no blood now in my sputum. I will let you know if what will happen next. I know this is kinda risky but my body and mind is telling that I dont need those meds this time. Happy 4th to everyone!

Jump to this post

@imeehaight Definitely the sweat and in the shower stall I can't stand the smell of myself.
JK

REPLY
boomerexpert | @boomerexpert | Jul 6, 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
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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.

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Looks like it got lost from the original post to which I replied...! I was referring to testing for Alpha-1 deficiencency

REPLY
Katherine, Alumni Mentor | @katemn | Jul 6, 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

@boomerexpert, I am NOT an expert .. NOR a doctor but when I noticed on my genetic testing on 23andMe (a website that tests I think 1% of my genetic code) showed: "Detected mutation" is: PI*Z .. the most severe mutation .. increased risk for COPD. I then showed this report to Dr. Timothy Aksamit who showed a great interest in this genetic mutation and requested a copy of the report. Then in 2017 I met with Mayo Clinic Dr. Dulohery who notes in her bio: Interests Chronic obstructive pulmonary disease, Bronchiectasis, Alpha-1 antitrypsin deficiency, Asthma, Nontuberculous mycobacterial pulmonary disease.

I found it very interesting that an area of interest for her was: Alpha-1 antitrypsin deficiency. In correspondence she said: " If your testing indicated the Z mutation, we should complete full alpha-1 antitrypsin deficiency testing to determine which genes you have and if the level is low. I have added to blood work to your evaluation in July."

So @boomerexpert NOT being an expert I can only tell you .. a Mayo Clinic Doctor appears to be VERY interested in giving me FURTHER testing since my 23andMe testing DOES indicate the Z mutation. What all this means I do not have a clue since I am not a doctor nor an expert. I DO hope to gain further knowledge from Dr. Dulohery in coming months as it relates to my MAC and Bronchiectasis which I will share with our Connect Community. Katherine

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