(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 group.

@macinpa

Hi Sue, Is your 3x's a week maintenance or normal dosage? My Doctor usually does it daily for 6 months, confirm negative follow-up cultures, then convert to 3 days a week. He also said he increases the Ethambutol dose when going to 3 days. He also mentions that 3 times is for patients with less significant "burden" of MAI. I don't really know what my burden is other than I don't have symptoms and never have. My MAC was found by change with a CT Scan of my abdominal area. Thanks, MACinPA

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I am no longer on antibiotics. My initial Rx was for 3 times a week, which I believe is the usual protocol. When my MAC didn't improve after 12 months, and my lung CT got even worse, it was increased to once a day.
Sue

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@woot

Hi Helen,
Aerobika does help if you use it the right way. Watch YouTube demonstrations. I’m using it now as I write to you, hooked up to my nebulizer cup so I can do both at the same time. My doctor showed me how to connect them. Also a YouTube to show that. National Jewish Dr feels strongly you need Aerobika along with nebulizing 7% saline twice a day. Think of it as your job is Airway Clearance. Good luck.
Linda

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Hi Linda! I am sitting here doing the exact same thing with my Aerobika. Cheers!

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@helenrivera

Hello Terri, I am using about 2 times a day but haven't been consistent. Not sure how I feel feel about the Aerobika as I don't feel anything… I am hoping with everything I am on something will help to get my sputum moving. Thanks for responding…

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Hello Helen. I was bringing up clear sputem before using the aerobike. Ever since I started using the Aerobika; nothing comes up. I think it may be coincidental though. At any rate, I do like how it vibrates my airways; it's like getting a lung massage. I just wish the sputem would come out.

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@fdixon63

Terri. I am (for the first time) doing the Tobi for two weeks on, two weeks off. On the three times I've done it before it was always for 28 days. I always have lost my voice on day three but with gargling salt water I can sorta get back to a growly voice after a week. Thanks again for all the good info. There is an old saying, "A wise man knows it is better to learn off the bumps from someone else's head." That's what we do here.

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I love that saying!

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@helenrivera

Hello Terri, I am using about 2 times a day but haven't been consistent. Not sure how I feel feel about the Aerobika as I don't feel anything… I am hoping with everything I am on something will help to get my sputum moving. Thanks for responding…

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Helen, you have to huff hard through the device to get it to flutter. You take a deep breath in, hold a few seconds and then HUFF, or blow hard on the exhale. You should hear and feel the vibration.

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@windwalker

Hello Helen. I was bringing up clear sputem before using the aerobike. Ever since I started using the Aerobika; nothing comes up. I think it may be coincidental though. At any rate, I do like how it vibrates my airways; it's like getting a lung massage. I just wish the sputem would come out.

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Hello, I don't feel the vibration in my lungs. I feel the vibration on the devise. Am I doing something wrong?

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@salynn

I have wondered about this myself. Mine has remained a sickly green (except when brown, pink, or red from old or fresh blood) for the last 8 months, and I have wondered if that would ever change. From what I have been able to ascertain, the answer to whether colored sputum indicates chronic inflammation from bronchiectasis or active infection is yes. In other words, either can cause it. The color comes from white blood cells (particularly neutrophils) or their breakdown products. This can occur with chronic, non-infectious inflammatory conditions, like bronchiectasis, or with infections. From reading through posts, it sounds like there is tremendous variability from person to person as to what their "typical" sputum color is. My sense is that it is important to be alert to changes (for example, changing from clear to yellow or green), as these may suggest something new, but, for some, the sputum may stay colored, even in the absence of an active infection due to the ongoing inflammation. Just my two cents.

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Hello salynn @salynn I agree with your assessment that sputum color can vary greatly from one person to another and may indicate infection and/or inflammation. My own sputum has remained the same over my entire coughing medical history (light brown). I would prefer to have clear sputum but I have learned to just not worry about it. Unless it were to change colors and I started showing symptoms.

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@marthamac

Those symptoms sound a lot like the current Covid variant. Be sure to get tested and consider Paxlovid if positive!

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Thank you. Not COVID thank goodness. The horrible itchiness stopped know my nose is a bit irritated and runny. Nothing like a few days ago. When you said COVID I thought well maybe now not sure what the cause is. Thank you and God Bless us all.

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@sueinmn

Hello – I took Rifampin for over 18 months, and found it difficult to tolerate, as do quite a few people in this group. Aside from a little staining, it had no effect on my gums. The discoloration took nearly a year to go away.
But, I did look it up here: https://www.mayoclinic.org/drugs-supplements/rifampin-oral-route/side-effects/drg-20065839?p=1
Bleeding gums are considered serious enough to bring to the attention of your doctor, and it sounds like you did that. There is also a VERY long list of meds which can interact badly with Rifampin, so if you are/were using them, it could have had an extra impact. If the gum recession progresses now that you are off Rifampin, or you are very concerned, you could consult a periodontist.
It would be great if you let us know what you learn.
Sue

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I have been taking Atorvaststin 10mg daily for several months. I notice lately that my gums bleed in some areas when I floss and brush. I have taken statin medication 20mg before (about 2 yrs. Ago) but discontinued when I started having nose bleeds. I did not notice any problems when I did this and the nose bleeds stopped. The directions on the bottle carry a warning about stopping the drug. I am considering stopping again. What kind of health problems could I expect if I did this? Has anyone had any experience with using Diametaceous Earth as a supplement to control cholesterol?

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@tinear

I have been taking Atorvaststin 10mg daily for several months. I notice lately that my gums bleed in some areas when I floss and brush. I have taken statin medication 20mg before (about 2 yrs. Ago) but discontinued when I started having nose bleeds. I did not notice any problems when I did this and the nose bleeds stopped. The directions on the bottle carry a warning about stopping the drug. I am considering stopping again. What kind of health problems could I expect if I did this? Has anyone had any experience with using Diametaceous Earth as a supplement to control cholesterol?

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As you have learned, all medications and have side effects and interact with one another. I think you and your doc need to do a risk benefit assessment, and possibly find an alternative. In the meantime do not stop abruptly unless instructed.

As for the diatomaceous earth, every link touting its use is by someone promoting or marketing it. The conclusion by medical professionals is that it is interesting but not yet proven. I personally would not eat dirt unless prescribed by a doc who knows me and can show clear scientific proof for doing it. Maybe you can find a true scientific study to participate in., one done by a university or teaching hospital.
Have you talked to the doctor yet?

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Regarding the color of sputum, currently mine is either yellowish, or white foamy. I have MAC and Bronchiectasis. Does the yellow sputum indicate that the bug is active such that I should keep taking antibiotics or anyone experience similar sputum but can stay free from antibiotics? I’d like to hear your thoughts. Thanks!

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@caontm

Regarding the color of sputum, currently mine is either yellowish, or white foamy. I have MAC and Bronchiectasis. Does the yellow sputum indicate that the bug is active such that I should keep taking antibiotics or anyone experience similar sputum but can stay free from antibiotics? I’d like to hear your thoughts. Thanks!

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Hi, I have these colored sputum all the time. After exercise and yoga especially. Then I nebulize and its sort of a clean up what sputum is left for the most part. I dont take antibiotics and my doctors encourage to rid my lungs of bacteria, this is what it is. I have been doing this for two years. I guess the good news is that my condition is not getting worse. My doctor said if it get worse, Ill have to have antibiotics. Good luck, Hal

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