(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.

@fdixon63

Hi Group. I'm on day 11 of inhaled Tobi. The more the treatment goes on my cough seems to get worse–makes throat sore. The amount of yellow, green, brownish sputum has increased. Seems like all this coughing could be making my bronchiectasis worse, i.e. damaging…. Sorry I'm rambling. It seems when I think I've got the treatment figured out I cough more. Anyway, let me ask this question. When you cough up anything of color–not pale stuff either but real color and thick, does that indicate there is infection still in my lungs? And, is it a case when I'll always cough up something? I do realize we're all different and this disease just confirms that for sure. God bless us all.

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fdixon, I used the inhaled toby for many years and it would make me feel worse for the first three weeks. Then, by the end of week four, I would see much improvement and the cough would cease. I was on the toby every other month, and I remember saying to myself whenever I would first start the treatment; "It is always worse before it gets better." I feel like the increase in color that you see in your sputem may be due to the toby bringing up gunk from way down within your airways.

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@helenrivera

Thank you Bill. I will start using a Aerobika this week as I ordered one. I am using a Message Gun and the Alcapala but little to nothing. Watching the video now. Thank you and prayers you stay off these meds. God Bless

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Hello Helen. I finally ordered an aerobika a few months ago. It still isn't bringing anything up for me, but, I do like the way it vibrates my airways. I am hoping that it is doing some good that I am unaware of. Please let me know how it works for you.

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@fdixon63

Hi Group. I'm on day 11 of inhaled Tobi. The more the treatment goes on my cough seems to get worse–makes throat sore. The amount of yellow, green, brownish sputum has increased. Seems like all this coughing could be making my bronchiectasis worse, i.e. damaging…. Sorry I'm rambling. It seems when I think I've got the treatment figured out I cough more. Anyway, let me ask this question. When you cough up anything of color–not pale stuff either but real color and thick, does that indicate there is infection still in my lungs? And, is it a case when I'll always cough up something? I do realize we're all different and this disease just confirms that for sure. God bless us all.

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fdixon, I used the inhaled toby for many years and it would make me feel worse for the first three weeks. Then, by the end of week four, I would see much improvement and the cough would cease. I was on the toby every other month, and I remember saying to myself whenever I would first start the treatment; "It is always worse before it gets better." I feel like the increase in color that you see in your sputem may be due to the toby bringing up gunk from way down within your airways. I also want to mention that when I first went on the toby; I lost my voice for weeks. After several months of toby use, all side affects went away and I could nebulize the med with ease.

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@windwalker

fdixon, I used the inhaled toby for many years and it would make me feel worse for the first three weeks. Then, by the end of week four, I would see much improvement and the cough would cease. I was on the toby every other month, and I remember saying to myself whenever I would first start the treatment; "It is always worse before it gets better." I feel like the increase in color that you see in your sputem may be due to the toby bringing up gunk from way down within your airways. I also want to mention that when I first went on the toby; I lost my voice for weeks. After several months of toby use, all side affects went away and I could nebulize the med with ease.

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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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In reply to @windwalker "Hi Heather!" + (show)
@windwalker

Hi Heather!

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Hi Terri 🙂

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Hi everyone, has anyone experienced runny and itchy nose. It came in suddenly and if yes what has worked as I feel miserable also a very bad headache. Taking 800 mg of ibuprofen and it takes the edge off. On all 3 MAC Antibiotics and Aryikace. Please anyone

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@windwalker

Hello Helen. I finally ordered an aerobika a few months ago. It still isn't bringing anything up for me, but, I do like the way it vibrates my airways. I am hoping that it is doing some good that I am unaware of. Please let me know how it works for you.

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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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@helenrivera

Hi everyone, has anyone experienced runny and itchy nose. It came in suddenly and if yes what has worked as I feel miserable also a very bad headache. Taking 800 mg of ibuprofen and it takes the edge off. On all 3 MAC Antibiotics and Aryikace. Please anyone

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

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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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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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@macinpa

SueinMN….thank you for replying. I've been going back in the posts trying to find you.
I started my first treatment on May 14th. All three at once. I lasted for two weeks, then the nausea started, plus fevers, body aches, fatigue, I voice even changed. My bloodwork was all over the place….especially my heart and liver. I was thinking Covid or Flu. My Doctor went to Canada on a vacation so I went to the ER. It was neither. I stopped taking the Big 3 immediately and it took nearly two weeks to get back to a somewhat normal life. I told my doctor I really couldn't start again until after the 4th of July. We were having company and I had one more wedding cake to make and couldn't be sick. Also, requested that we do it different, like I've been reading on this website. Start with one for a week, then add a second for a week, then add the third. I have no symptoms of MAC. It was found by chance with a CT scan of my abdomen. I'm going to take them at nighttime and see how it goes. If possible I would like to keep communicating with you. I can send you my e-mail address if that's allowed. Next question? Do patients talk with an Infectious Disease Specialist in addition to their Pulmonary Doctor? Thank you again, MacInPa

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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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