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 | 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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@ling123
Ling, you are right about that! Bless all on this site who helps and holds up
another.
 

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

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I agree Ling, get it immediately, it is easy and painless. My doc said 20 min. of breathing nebulizer, then half hour of some sort of aerobics, then acapella, gets stuff up and out.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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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@imeehaigt I
used to consume garlic on a regular basis for health, plus I love it. I would
have to listen to my husband whine about smelling it on me for DAYS. He hates
garlic and says the smell makes him nauseous. But yes, it is very beneficial to
good health. I may take up eating it again and watch tv upstairs away from him.
LOL!    - Terri M.
 

REPLY
unicorn | @unicorn | 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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Hi imeehaight: Sometimes I am afraid to cough because of blood also, but I do to get stuff out. if I cough really deep, it hurts, and I think blood will come, but most of time it does not. My doc said sticky phlegm from not drinking enough water.

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

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Hi Ling, so great that you are playing tennis! I think that is bringing up the mucous, which is good. Get it out! Drink tons of water for thinning mucous also. I wish I could Jog, but skeletal structure bad, so I swim but hard to get heartrate up in the pool. Love what it is doing to my arms though. xo

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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 Hi
Crista! So glad to hear you are swimming. Keep moving girl!!  Hugs - Terri
M.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 6, 2017
In reply to @freedom25 "Thank you for your replies. I have been trying to read a lot not only here,..." + (show)
@freedom25

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.

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Hi Patty. Please keep us posted on how you are doing and what they are doing for you. Hope you are feeling better soon. - Terri M.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 6, 2017
In reply to @freedom25 "Thank you for your replies. I have been trying to read a lot not only here,..." + (show)
@freedom25

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.

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Did you get the referral of a dr in NJ posted by terrib1 ?

REPLY
ling123 | @ling123 | 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

@unicorn You are so right about exercise and mucus. I don't have it when I play tennis. I think the quick breathing when I run around the court helps move it around instead of it being stuck in my bronchi. So sorry you have lost so much weight, although I wish I could lose a little. Mind you, I'm not overweight. But you know how it is when you hit a certain age. The fat only grows where you don't want it. LOL. Swimming is good though. The movement of the arms also helps working your lungs. Even though you don't feel like your heart rate goes up when swimming, it does only that you can't feel it as much when you are floating and not bearing weight. And more importantly, swimming is whole lot easier on your knees than jogging.

REPLY
Katherine, Alumni Mentor | @katemn | 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

@unicorn .. Christa and @imeehaigt Imee .. YES drinking LOTS of water is VERY beneficial .. but you will ALWAYS have sticky mucus .. it is a symptom of our disease. Personally I have a HUGE red glass that I keep beside me to remind me to drink lots of water .. and to refill .. but I STILL have sticky mucous .. it is the name of the game .. so don't flog yourself that you are not drinking enough water. Just keep trying to do it! Hugs! Katherine

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