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.

janskallerud | @janskallerud | Apr 12 11:51am
In reply to @janskallerud "I just saw this comment about drinking tea. I've perhaps missed an earlier conversation about tea,..." + (show)
@janskallerud

I just saw this comment about drinking tea. I've perhaps missed an earlier conversation about tea, but would really like to know what kind of tea and where to get it. I'm short on sleep due to the whistling and wheezing sounds when I lie down to sleep and am wondering if the tea would be helpful for that?
Thank you for any suggestions you may have.
Jan Skallerud

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I should have added that I have Bronchiectasis, but have not been diagnosed with MAC.
Jan Skallerud

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irenea8 | @irenea8 | Apr 13 8:43am
In reply to @jw87 "Has anyone tried mullein leaf extract for MAC and bronchiectasis? I recently read that it can..." + (show)
@jw87

Has anyone tried mullein leaf extract for MAC and bronchiectasis? I recently read that it can clear all the mucus from your lungs.

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https://www.amazon.com/dp/B0C3WSXPFG?psc=1&ref=ppx_yo2ov_dt_b_product_details
I just ordered this. Not sure about the Ginseng however. Too stimulating. But have used Mullein before and it helped a lot sometimes and other times not at all.

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1 reply
nonamebrand | @nonamebrand | Apr 13 10:47am

I did research on that new drug you are taking and nothing I read was good ..way too many serious side effects ..I think I'd be a bit concerned and supposedly only for people who have done the big three and it didn't work .I really should have tried to go to NJC but unfortunately the expense was too great financially so I'm stuck with four Infectious disease Drs who just compare notes ..

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sweethighland | @sweethighland | Apr 13 4:15pm
In reply to @irenea8 "https://www.amazon.com/dp/B0C3WSXPFG?psc=1&ref=ppx_yo2ov_dt_b_product_details I just ordered this. Not sure about the Ginseng however. Too stimulating. But have used..." + (show)
@irenea8

https://www.amazon.com/dp/B0C3WSXPFG?psc=1&ref=ppx_yo2ov_dt_b_product_details
I just ordered this. Not sure about the Ginseng however. Too stimulating. But have used Mullein before and it helped a lot sometimes and other times not at all.

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https://herbalteatherapy.com/blogs/news
you can order from here too. Given to me by the raspatory therapist Elizabeth from the youtube channel.

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kagilb | @kagilb | Apr 14 3:02pm
In reply to @dinaj22 "I travel with a drizzle pot. Foldable silicone pot with a heating element built in. Boils..." + (show)
@dinaj22

I travel with a drizzle pot. Foldable silicone pot with a heating element built in. Boils quickly. Super compact. Just enough capacity for pari or ombra nebulizer cup, aerobika and salbutamol puffer sleeve. Source distilled water from ship or first store you can get to. Drizzle pot comes with different plugs so works in Europe and NA. Travel with multiple sets equipment if you can. So important to keep clearing every day. Suspect your Respirologist would highly reco staying on your medication. It’s a pain but might be best for you in the long run. Sorry just replying now. I learned about drizzle pots here and have been eternally grateful for the advice. So many great tips from our community here. All the best! D

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I travel with microwave steam bags, but not all hotels have microwaves and boats don't for safety reasons. On the last two ocean cruises I was able to get a plug in tea pot from the crew to boil water. We are going to France in 2 weeks which will include hotels and a river cruise and I bought a Drizzle Pot to take. It folds down to just several inches and weighs less than 2 #. I tested it out at home and was satisfied. It can hold a Sprint Pari neb and Aerobika at the same time. Have a good trip!
K

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avalosc3211 | @avalosc3211 | Aug 13 10:13pm
In reply to @katemn "Hi Kathy! So glad you got in! I always make sure to set my next appointment..." + (show)
@katemn

Hi Kathy!
So glad you got in! I always make sure to set my next appointment while I am there for a 3 month follow up if needed as he is hard to get into.

I hope you like him as much as I do .. as far as I am concerned he just "walks on water"! At my age I've dealt with a lot of various doctors over the years .. without a doubt he has been the most caring, watchful and on the ball I've ever had. Of course as in all medicine you MUST be your own advocate .. EDUCATE yourself .. keep in mind that NO ONE knows your body as well as you do .. question until you are satisfied that you understand etc.

Hope your appointment goes well! If you are interested .. from various sources I put together a form to take to appointments to remind me of what questions to ask. If you are interested I could email it to you .. you could then adapt it to your own needs. Email me if you are interested .. I think you have my personal email.
Best regards,
Katherine (Kate is just my anonymous name!)

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Hi Kate,
I was diagnosed 1 year ago with MAC. I am very interest in your form to take to appointments, I struggle with what to ask since this is all new to me. If you could share this with me I would be most appreciative. I would also be interested with what meds you are taking that are not making you ill. That is so good to hear. I have put off treatment from the horror stories I have heard about how sick the meds can make you feel. If you don't mind sharing, please email me. Thank you in advance for your time and help. Warm Regards. C

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1 reply
scratssun | @scratssun | Aug 14 11:02am
In reply to @avalosc3211 "Hi Kate, I was diagnosed 1 year ago with MAC. I am very interest in your..." + (show)
@avalosc3211

Hi Kate,
I was diagnosed 1 year ago with MAC. I am very interest in your form to take to appointments, I struggle with what to ask since this is all new to me. If you could share this with me I would be most appreciative. I would also be interested with what meds you are taking that are not making you ill. That is so good to hear. I have put off treatment from the horror stories I have heard about how sick the meds can make you feel. If you don't mind sharing, please email me. Thank you in advance for your time and help. Warm Regards. C

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Other than weight loss, I have tolerated the big 3 with no side effects since December 2023. I, too, was apprehensive but am very satisfied that I chose to take the meds.

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2 replies
Nancy C | @nac1 | Aug 14 2:31pm
In reply to @scratssun "Other than weight loss, I have tolerated the big 3 with no side effects since December..." + (show)
@scratssun

Other than weight loss, I have tolerated the big 3 with no side effects since December 2023. I, too, was apprehensive but am very satisfied that I chose to take the meds.

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And did the meds clear up the sputum and coughing?

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1 reply
scratssun | @scratssun | Aug 14 11:15pm
In reply to @nac1 "And did the meds clear up the sputum and coughing?" + (show)
@nac1

And did the meds clear up the sputum and coughing?

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Yes coughing no longer a problem--gone thank goodness 😊. I did not have a sputum issue so I'll have a broncoscopy to determine results in December.

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1 reply
lindabourassai | @lindabourassai | Aug 15 11:36am

I have MAC which was diagnosed in 2016. I am unable to tolerate the big 3 or Arykace as they cause me to be bedridden. I went to National Jewish Hospital in Denver where they did all of the tests possible but did not find anything useful. Since I cant tolerate the meds the only treatment they suggested that I do was To nebulize with 7% salt. Has anyone else had the same diagnosis and treatment?

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