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 5, 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 Gina, were you put on the BIG THREE antibiotics? How are you doing now? - Terri M.

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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@katemn and @windwalker, thank you both for caring. Very much appreciated. I will definitely take your suggestions to heart and seriously look into acquiring the necessary equipment to help with the mucus situation.

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Katherine, Alumni Mentor | @katemn | 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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@imeehaigt .. imee, when you say " I feel like there are lots of phlegm in my lungs but I'm afraid to cough it out since I might cough blood." Imee, I hate to bug you BUT IF you had been doing YOUR "due diligence" and READING the past pages of our Forum .. you would ALREADY know "lots of phlegm in my lungs" is a TERRIBLE breeding ground in your LUNGS for all kinds of mycobacterium AND bacteria .. AND your unbased fear of some blood is going to potentially lead you to some WAY WORSE things like MAC/MAI and serious Bronchiectasis! Mama Katherine is telling you .. WAKE UP!! Your fear is NOT based on logic .. you SHOULD be afraid of NOT doing "Lung Clearance" like we talk about on our Forum! Get all that mucus OUT of your lungs .. do NOT worry about the blood!! I am going to give you more information on the blood below .. BUT you need to get reading the past pages .. Knowledge is Power .. it TAKES AWAY fear! Take heart .. we WILL be here for you .. President Roosevelt said "the only thing we have to fear is fear itself" .. sending you a Big Hug! Katherine

From my File Cabinet:
BLOOD/BLEEDING- BRONCHIECTASIS Coughing up of blood (hemoptysis) is common because the damaged airway walls are fragile and have increased numbers of blood vessels. Hemoptysis may be the first or only symptom of Bronchiectasis.

you said "I noticed a blood in my sputum I got alarmed again" .. I can only tell you .. the first time I spoke with my Mayo doctor about coughing up blood .. he REALLY did not react much at all .. his response "What was the quantity .. a quarter cup .. a tablespoon .. a teaspoon?" Hmmm! Mine was merely at different times a blood clot perhaps the size of less than a dime .. and/or the sputum MIXED with blood .. NEVER the quantity he was speaking of! So my question to you is judge by the quantity of blood and the frequency. Then evaluate from some of the information I am going to give you below from my File Cabinet. Keep us posted .. let us know what your thoughts are after you have evaluated. Hope you find this helpful! Hugs to you! Katherine

From Member @colapyrus, Jan I have also had hemoptysis (Hemoptysis is the coughing up of blood or blood-stained mucus from the bronchi, larynx, trachea, or lungs) – several times this past year. It usually lasts about 15 minutes and then stops on its own. When I was at NJH in May they said it will stop about 80% of the time on its own and 20% of the time you need some help. In my case I was told to lie on my right side (because my bronchiectasis is in my right middle lobe)

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 Sounds
good Ling. I knew you were in pretty good shape, we just want to keep you that
way! If you can play tennis, then you are doing great my friend.
 

REPLY
ling123 | @ling123 | 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!

Jump to this post

@imeehaigt , if you feel that there is a lot of phlegm in your lungs, you need to try your best to get it out. Keep it in will cause the bacteria to be caught in your lungs. That is how a lot of people get MAC. Since you have been tested negative for NTM, you really want to keep it that way. I try to cough it out throughout the day everyday. If you are afraid of coughing up blood or being too noisy, you can use the equipment that has been recommended on this forum by several people to thin the phlegm so it comes out more easily. Do whatever you have to, just not keep the phlegm in your lungs. Ling

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!

Jump to this post

Thanks @ling123 and @katemn, I agree on what you said Katherine I am actually doing it everyday, but these past days since I started to have blood stain in my mucus that was the time that I did not do my daily routine to expel mucus everyday. Im still doing my daily deep breathing excercise. I will do what you say to make sure to clear my lungs everyday I just make to always have tranexamic acid ready in case I will cough up blood. I HOPE NOT. I continued taking fresh gloves of garlic everyday this is my daily antibiotics lol. Good night 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 Thanks again. It's so great to know that there are people I have never met who care about me and understand where I'm coming from when I talk about my conditions. This is a unique type of comradery that we can't find anywhere else, not even with our families and friends who don't have the same health problems that we do.

REPLY
ling123 | @ling123 | 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!

Jump to this post

@imeehaigh, my experience tells me that trying to clear the phlegm out of your lungs should not cause the bleeding. When you cough up blood, something is going on in your bronchi to cause it. So if there is blood, it will try to come out whether you cough or not. Don't be too concerned about seeing blood. It is pretty common with people who have brochiectasis and/or MAC. It should be pretty short lived.

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 you directed this to Terri .. BUT that is what we ALL get from our Community .. our family and friends care about us but they just plain CANNOT "get it" .. they have NOT walked this walk .. ONLY we who have been on this very same journey can understand .. and truly care about the progress .. or non progress as we go along .. AND reach out a helping hand IF we are just ONE step ahead on that journey for a Newcomer .. giving back "Playing it forward"! That is what we do/give to each other! That is what makes our Community so vibrant .. so loving .. so giving .. AND why I am SO proud to be a part of this Connect! Yes, we DO care about you! Hugs to you! Katherine

REPLY
maryjo2sell | @maryjo2sell | 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 want to add that i spoke with Aerobika early in their release. My original one would " stick" and not vibrate. They immediately sent me a new one and couldnt have been nicer. They did tell me that after cleaning please use distilled water to rinse thoroughly so Aerobika would last longer and not stick. Mary jo

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