(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

Can someone tell me whether the Breathe East tea referred to is the brand called Traditional Nedicinals? Tough night so surfing for products!

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@mrf5629

Can someone tell me whether the Breathe East tea referred to is the brand called Traditional Nedicinals? Tough night so surfing for products!

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Yes, Beth, the tea is made by Traditional Medicines. I am so sorry that you had a tough night. I think we can all relate to that. Was there a specific symptom that kept you awake?

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@windwalker

Yes, Beth, the tea is made by Traditional Medicines. I am so sorry that you had a tough night. I think we can all relate to that. Was there a specific symptom that kept you awake?

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Thank yoy!

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@windwalker

Yes, Beth, the tea is made by Traditional Medicines. I am so sorry that you had a tough night. I think we can all relate to that. Was there a specific symptom that kept you awake?

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Dear friends, can somebody help me with advice ?
Unfortunately I had to stop all my TB meds today. I've developed rapidly worsening Long QT (now in the 'severe' range) and Hypokalemia from the Azithromycin and Clofazimine.
I tried so hard to be a very compliant patient over the past 2 years, but have to stop now even though I still haven't got rid of the MAI. I just can't seem to make it to the finish line!
Has anyone else gone through this ? Do you have any advice for me ?
This site has been quiet for a while, but I think of you all, and I hope somebody can help me and all of us
Anniepie x

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@anniepie

Dear friends, can somebody help me with advice ?
Unfortunately I had to stop all my TB meds today. I've developed rapidly worsening Long QT (now in the 'severe' range) and Hypokalemia from the Azithromycin and Clofazimine.
I tried so hard to be a very compliant patient over the past 2 years, but have to stop now even though I still haven't got rid of the MAI. I just can't seem to make it to the finish line!
Has anyone else gone through this ? Do you have any advice for me ?
This site has been quiet for a while, but I think of you all, and I hope somebody can help me and all of us
Anniepie x

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@anniepie I am so sorry you are dealing with these other health issues arising from the meds. That is a problem with MAC/MAI. It is difficult to get rid of for many of us, and the drugs to accomplish that are harsh. The suggestion I will make is to talk to your ID doctor about Arikayce. It is inhaled and, therefore, goes directly to your lungs. It is for people like you and others who have not responded to conventional treatment or can’t tolerate the other meds alone. It is worth asking about. irene5

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@anniepie What a difficult path many are on with lung infection. I have no suggestions but hope you are able to find a solution. Good luck to you. Kate

Liked by migizii, anniepie

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Good morning Anniepie, Don’t give up hope! I had to stop all of my meds after 6 months because of side effects. That was about a year ago and I have been using the nebulizer, along with Aerobika and manual percussion twice a day since then. I started with 3% but transitioned to 7% after reading about it here. I also made significant dietary changes, started taking supplements (that I read about here and had confirmed by my naturopath) and made more of an effort to get cardio and strength building exercise every day so I could challenge my lungs and strengthen my body. It is much more work and effort than taking the big 3 but my health is better now and my viral count is consistently lower. I’m grateful that my heart rhythm has gone back to normal but I still have hearing loss and tinnitus.

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@sueinmn

Usually two, sometimes just one. I find it helps loosening mucus and with shortness of breath. My husband drinks it too, but adds a bit of honey.
Sue

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Hi Sue. I am back on the tea myself. I find it very helpful.

Liked by Brenda R., anniepie

REPLY
@anniepie

Dear friends, can somebody help me with advice ?
Unfortunately I had to stop all my TB meds today. I've developed rapidly worsening Long QT (now in the 'severe' range) and Hypokalemia from the Azithromycin and Clofazimine.
I tried so hard to be a very compliant patient over the past 2 years, but have to stop now even though I still haven't got rid of the MAI. I just can't seem to make it to the finish line!
Has anyone else gone through this ? Do you have any advice for me ?
This site has been quiet for a while, but I think of you all, and I hope somebody can help me and all of us
Anniepie x

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Anniepie, I am with Irene on this, perhaps ask your dr about Arikayce. There are quite a few of our members here that have gone on that med with success. Please keep me in the loop as to what your dr has to say about it.

Liked by anniepie

REPLY
@anniepie

Dear friends, can somebody help me with advice ?
Unfortunately I had to stop all my TB meds today. I've developed rapidly worsening Long QT (now in the 'severe' range) and Hypokalemia from the Azithromycin and Clofazimine.
I tried so hard to be a very compliant patient over the past 2 years, but have to stop now even though I still haven't got rid of the MAI. I just can't seem to make it to the finish line!
Has anyone else gone through this ? Do you have any advice for me ?
This site has been quiet for a while, but I think of you all, and I hope somebody can help me and all of us
Anniepie x

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I'm sorry you had to stop the meds after working so hard to get rid of the MAC, but there is hope. If you are still symptomatic, I suggest you do ask about Arikayce as suggested. I also had to stop the meds due to side effects while still positive last winter, but I no longer had symptoms. So using 7% saline nebs and airway clearance seems to have kept me on a decent track. I also use "Breathe Easy" tea every day to help keep my lungs clear, nebulize levalbuterol when short of breath, and do daily exercises and walking to keep my lungs strong.
Good luck in finding a regimen that will work for you.
Sue

REPLY
@sueinmn

I'm sorry you had to stop the meds after working so hard to get rid of the MAC, but there is hope. If you are still symptomatic, I suggest you do ask about Arikayce as suggested. I also had to stop the meds due to side effects while still positive last winter, but I no longer had symptoms. So using 7% saline nebs and airway clearance seems to have kept me on a decent track. I also use "Breathe Easy" tea every day to help keep my lungs clear, nebulize levalbuterol when short of breath, and do daily exercises and walking to keep my lungs strong.
Good luck in finding a regimen that will work for you.
Sue

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Can you please tell me what Arikayce is? My local Doc.'s do not want to treat the MAC saying it's very hard to get rid of and the side effects from meds would be too hard on me. But maybe Arikayce is an alternative I do not know about. Please advise

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In reply to @mrf5629 "Thank yoy!" + (show)
@mrf5629

Thank yoy!

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Hello MAC friends, Also, Traditional Medicines makes an organic Peppermint tea that helps keep my lungs open all day. I sip it throughout the day.

Liked by Brenda R.

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@janrn1

Can you please tell me what Arikayce is? My local Doc.'s do not want to treat the MAC saying it's very hard to get rid of and the side effects from meds would be too hard on me. But maybe Arikayce is an alternative I do not know about. Please advise

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@janrn1 Arikayce is an inhaled liposome suspension of amikacin. Amikacin is an antibiotic that has been around for quite some time. When you inhale Arikayce, the liposomes containing the medicine travel into your lungs. Once inside your lungs, they release the medicine to fight MAC/MAI. It is a different yet effective way to fight the disease. Arikayce is in a phase three clinical trial. It is an FDA approved treatment plan in patients who did not respond to a combination antibacterial drug treatment alone. I have been on this med along with two of the Big 3 since June. irene5

Liked by Brenda R., anniepie

REPLY
@windwalker

Anniepie, I am with Irene on this, perhaps ask your dr about Arikayce. There are quite a few of our members here that have gone on that med with success. Please keep me in the loop as to what your dr has to say about it.

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Thanks Terri and thanks so much everyone else.

Yes I will try to get onto Arikayce — that was planned anyway for a few months time. But I think I will have to take something else as well.
I might go back on the Ethambutol. (Still scared a bit every time I take it. But the heart problems that happened with the Macrolides — Azithromycin and Clarithromycin — and with Clofazimine freaked me out).

Has anyone ever tried Bedaquiline??? It's a TB drug but in more recent studies it appears also to work with MAC and with Intracellulare in particular.

You're all so kind — I can't thank you all enough for being there for me.
Virtual hugs, Annie x

REPLY
@sueinmn

I'm sorry you had to stop the meds after working so hard to get rid of the MAC, but there is hope. If you are still symptomatic, I suggest you do ask about Arikayce as suggested. I also had to stop the meds due to side effects while still positive last winter, but I no longer had symptoms. So using 7% saline nebs and airway clearance seems to have kept me on a decent track. I also use "Breathe Easy" tea every day to help keep my lungs clear, nebulize levalbuterol when short of breath, and do daily exercises and walking to keep my lungs strong.
Good luck in finding a regimen that will work for you.
Sue

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Breathe easy tea have any side effects.

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