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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 5, 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

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Please add your doctor recommendations to this discussion so that others can find your recommendations easily. cc @unicorn

Good MAC Doctor? http://mayocl.in/2paMbB7

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 5, 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 Ni
how ma Ling. Two things you said about yourself sent up a red flag for me; that
is that you cough up blood sometimes (that is not normal & can indicate a
small localized infection), and that you cough up lots of thick phlegm. I know
you are putting off antibiotic use for as long as possible, but I feel like you
should at least be on the nebulized saline treatment. It will loosen and thin
the mucous so that it comes up easier. Since I have been doing it for almost a
yr now, my rails and wheezing have gone away. And my lungs are cystal clear.
Some of the credit goes to the tobramycin that I also nebulize for pseudomonas.
It is just saline, salt water, it will not hurt you. But it can do you a world
of good.
 

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 5, 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 This
is just me, I would not wait until Sept to discuss getting a prescription for
the sodium Chloride 7% inhalable solution (saline). It really is not a big deal.
He can send the scrip for it straight to your pharmacy. If you do not own a
nebulizer, have him write a script for that too so insurance will cover it. Can
be purchased over the counter as well. Sept is two months away. That is two
months of gunk gathering in your lungs that MAC and pseudomonas, or any other
specie of mycobacterium can take up residence.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 5, 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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@katemn What
Linda said is true about the Mayo doing x-rays mostly, and CT scan sparingly. My
doctor explained that CT scans are extremely strong and put out a ton of
radiation. Radiation is cumulative, meaning it adds up and stays in your body.
Too much radiation damages DNA and can cause cancer. I was reading an article
last night that was in the Washington Post about that too. In fact, someone on
this forum had posted the link, probably Linda, not sure. A doctor in that
article said that &apos;No medical treatment is all the way &apos;good&apos; for you. All will
have some degree of damage. They decide when they treat if the slight damage is
better than not treating a disease."
 

REPLY
Katherine, Alumni Mentor | @katemn | Jul 5, 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 and @windwalker .. Ling I just have agree with Terri .. I was on 3% and didn't feel it was helping enough .. I contacted my doctor and requested 7% .. it was so simple .. prescription was faxed to my pharmacy and boom it was taken care of! If you need nebulizer and compressor info just let me know. Just know that both Terri and I have down this road before .. AND gotten nasty critters in our lungs as a result .. if we didn't care about you we wouldn't be bothering! Hugs to you!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 5, 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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@katemn &
@ling123 True story Ling, we DO care!  -
Terri
 

REPLY
Katherine, Alumni Mentor | @katemn | Jul 5, 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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@windwalker Terri, very good reminder and information .. thank you! Hugs! Katherine

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 5, 2017
In reply to @katemn "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..." + (show)
@katemn

Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine

SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"

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@katemn
Thank you for that info Katherine. Boy! I would just love to be in the lab
and see all of that stuff! I have always been intrigued with microscopic
things in general.
 

REPLY
imeehaigt | @imeehaigt | Jul 5, 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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Thanks @katemn, i do have bronchaectasis and the blood is just a stain in mucus that was last sunday only. Ive been deligently doing my regular check ups and lab test my lab test result last jan was negative of NTM. As of now im not taking any meds except for my multi vitamins I continued to produce sticky phlegm and I noticed that it stopped when I started to exercise everyday. My doctor is very far from here so he prescribed me a reserve antibiotics in case I cough up blood. As of now I feel like there are lots of phlegm in my lungs but Im afraid to cough it out since I might cough blood. But im doing Ok still going to work everynight.
Hugs and kisses to everyone

REPLY
ling123 | @ling123 | Jul 5, 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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@windwalker Thank you very much for your concern. I have been coughing up thick mucus for over 20 years. It is very annoying. But it has not prevented me from living a normal, active life. I don't have problems with breathing. No wheezing, either. I've in my 60's but still able to play tennis 2-3 times a week all year round. That's how active and healthy I am. I believe the mucus is caused by brochiectasis, which is the cause for me catching MAC eventually. But other than coughing up blood twice (first time pretty heavy, second time very light) in the past 2.5 years, I continue to feel fine. No other health problems with my lungs or other organs. But I do agree with you that I should look into how to improve my mucus situation. I will definitely look into getting the Aerobika that Katherine has recommended. I will also ask my doctor about the possibility of getting help with mucus thinning when I go to my appointment with him in September.

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