(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

Have had bronchiectasis almost 27 years, MAC which I seemed to have kicked for now, some 6-10. When went into nightly sweats, frequent shortness of breath, lost about 15 pound (& am thin) 3 years ago – after years of antibiotics with every little exacerbation – & the cocktail was prescribed I'd had enough, went "alternative," have had peaceful 3 years tho now need some adjustments around colloidal silver. But seem to have kicked MAC for now – nothing in last sputum test. anyway, I've depended on healthy diet, whatever exercise could do & as frequently as could do it; herbs like olive leaf extract, pau d'arco, lots other supplements. I think it generally good idea not to depend strictly on "allopathic" medicine, expand your horizons, if can afford it, check into naturopathy, homeopathics, etc. As I learned to do, then forgot, around cancer which I had (ovarian) from 20s to 30s, now MUCH older. – Blessings, good luck all!

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@heathert

@anniepie not me, I felt good on it. Heather

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Hi Heather, Diane and Irene (@heathert @goatlady @irene5 ), I'm just letting you know that I'm not able to take Arikayce anymore and have stopped it after seeing my pulmo yesterday.
I was only 3 months in with this drug and it's just bad luck, but I got some heavy side effects and they were realy getting too difficult for me, so it had to stop.
First the tinnitus and hearing loss I got with the big 3 became worse on hearing tests after the Arikayce, then lung trouble and breathlessness got a lot worse every day too.
I'm very disappointed because I was really hoping it would help me, and I was really trying to tough it out.
But I guess I'm also feeling relieved to stop it now too.
I hope the worsened lung problems recover as much as possible in the next few months. Louder tinnitus and more hearing loss is permanent unfortunately, but I guess it's just the price we have to pay sometimes,
I hope that Arikayce helps for.all of you who are able to take it much more safely than me — I wish the very best of luck to you.
Annie x

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@anniepie

Hi Heather, Diane and Irene (@heathert @goatlady @irene5 ), I'm just letting you know that I'm not able to take Arikayce anymore and have stopped it after seeing my pulmo yesterday.
I was only 3 months in with this drug and it's just bad luck, but I got some heavy side effects and they were realy getting too difficult for me, so it had to stop.
First the tinnitus and hearing loss I got with the big 3 became worse on hearing tests after the Arikayce, then lung trouble and breathlessness got a lot worse every day too.
I'm very disappointed because I was really hoping it would help me, and I was really trying to tough it out.
But I guess I'm also feeling relieved to stop it now too.
I hope the worsened lung problems recover as much as possible in the next few months. Louder tinnitus and more hearing loss is permanent unfortunately, but I guess it's just the price we have to pay sometimes,
I hope that Arikayce helps for.all of you who are able to take it much more safely than me — I wish the very best of luck to you.
Annie x

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@anniepie So sorry to hear that Annie, hopefully that 3 months on it has done some good for you, does your Dr have another plan. Take care Heather

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@anniepie

Hi Heather, Diane and Irene (@heathert @goatlady @irene5 ), I'm just letting you know that I'm not able to take Arikayce anymore and have stopped it after seeing my pulmo yesterday.
I was only 3 months in with this drug and it's just bad luck, but I got some heavy side effects and they were realy getting too difficult for me, so it had to stop.
First the tinnitus and hearing loss I got with the big 3 became worse on hearing tests after the Arikayce, then lung trouble and breathlessness got a lot worse every day too.
I'm very disappointed because I was really hoping it would help me, and I was really trying to tough it out.
But I guess I'm also feeling relieved to stop it now too.
I hope the worsened lung problems recover as much as possible in the next few months. Louder tinnitus and more hearing loss is permanent unfortunately, but I guess it's just the price we have to pay sometimes,
I hope that Arikayce helps for.all of you who are able to take it much more safely than me — I wish the very best of luck to you.
Annie x

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Annie I am sorry you had to discontinue the Arikayce. I totally understand. Don’t beat yourself up about it. We all do the very best we can with this, and sometimes our bodies just say,” no bueno.” C’est la guerre! I’d say, “That’s life” , but MAC is more of a war. The good news is you gave it a try. It didn’t work for you. Someday, God willing, there will be a cure for this relentless disease. Irene

REPLY
@anniepie

Hi Heather, Diane and Irene (@heathert @goatlady @irene5 ), I'm just letting you know that I'm not able to take Arikayce anymore and have stopped it after seeing my pulmo yesterday.
I was only 3 months in with this drug and it's just bad luck, but I got some heavy side effects and they were realy getting too difficult for me, so it had to stop.
First the tinnitus and hearing loss I got with the big 3 became worse on hearing tests after the Arikayce, then lung trouble and breathlessness got a lot worse every day too.
I'm very disappointed because I was really hoping it would help me, and I was really trying to tough it out.
But I guess I'm also feeling relieved to stop it now too.
I hope the worsened lung problems recover as much as possible in the next few months. Louder tinnitus and more hearing loss is permanent unfortunately, but I guess it's just the price we have to pay sometimes,
I hope that Arikayce helps for.all of you who are able to take it much more safely than me — I wish the very best of luck to you.
Annie x

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Annie what I should say is someday, God willing, there will be a tolerable cure! Irene

REPLY
@anniepie

Hi Heather, Diane and Irene (@heathert @goatlady @irene5 ), I'm just letting you know that I'm not able to take Arikayce anymore and have stopped it after seeing my pulmo yesterday.
I was only 3 months in with this drug and it's just bad luck, but I got some heavy side effects and they were realy getting too difficult for me, so it had to stop.
First the tinnitus and hearing loss I got with the big 3 became worse on hearing tests after the Arikayce, then lung trouble and breathlessness got a lot worse every day too.
I'm very disappointed because I was really hoping it would help me, and I was really trying to tough it out.
But I guess I'm also feeling relieved to stop it now too.
I hope the worsened lung problems recover as much as possible in the next few months. Louder tinnitus and more hearing loss is permanent unfortunately, but I guess it's just the price we have to pay sometimes,
I hope that Arikayce helps for.all of you who are able to take it much more safely than me — I wish the very best of luck to you.
Annie x

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I only lasted 3 days. The tinnitus was deafening and I had horrible diarrhea that lasted months. I had high hopes for it also, but I knew almost immediately that this wasn't going to work for me. I am so sorry that you had such a bad experience with it also. Sending prayers your way.
Diane

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@goatlady

I only lasted 3 days. The tinnitus was deafening and I had horrible diarrhea that lasted months. I had high hopes for it also, but I knew almost immediately that this wasn't going to work for me. I am so sorry that you had such a bad experience with it also. Sending prayers your way.
Diane

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Thanks Diane @goatlady, your thoughts and prayers mean a lot to me. Annie x

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@irene5

Annie I am sorry you had to discontinue the Arikayce. I totally understand. Don’t beat yourself up about it. We all do the very best we can with this, and sometimes our bodies just say,” no bueno.” C’est la guerre! I’d say, “That’s life” , but MAC is more of a war. The good news is you gave it a try. It didn’t work for you. Someday, God willing, there will be a cure for this relentless disease. Irene

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Thanks very muc Irene @irene5 – hugs to you, Annie x

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@heathert

@anniepie So sorry to hear that Annie, hopefully that 3 months on it has done some good for you, does your Dr have another plan. Take care Heather

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Hi Heather @heathert thanks for caring. Yes my pulmo doctor has suggested another clinical trial. But it's an early phase trial and who knows if it will work as well, with fewer problems for me, Unfortunately at the moment, something else has come up with my health and that needs to be investigated now. I don't know if I will be eligible. We'll see, Hugs, Annie x

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@anniepie

Hi Heather @heathert thanks for caring. Yes my pulmo doctor has suggested another clinical trial. But it's an early phase trial and who knows if it will work as well, with fewer problems for me, Unfortunately at the moment, something else has come up with my health and that needs to be investigated now. I don't know if I will be eligible. We'll see, Hugs, Annie x

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oh Annie so sorry to hear something else has come up, life always throws us curve balls unfortunately, I hope it turns out to be nothing for you, I had a lump in my thryoid last year, which was a real worry but it turned out to be a cyst, these things can be so scary, I feel for you.. Good that there is another trial for MAC, do you know the name of it.I wish you all the best to be eligable to get into the trial . Take care and keep in touch, Hugs Heather

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@heathert

oh Annie so sorry to hear something else has come up, life always throws us curve balls unfortunately, I hope it turns out to be nothing for you, I had a lump in my thryoid last year, which was a real worry but it turned out to be a cyst, these things can be so scary, I feel for you.. Good that there is another trial for MAC, do you know the name of it.I wish you all the best to be eligable to get into the trial . Take care and keep in touch, Hugs Heather

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Thanks very much Heather @heathert.

It is the USA BeyondAir Clinical Trial (Nitric Oxide) based in Australia at Greenslopes Private Hospital in Brisbane. (It is also being run in the USA).

(I don't know if I will be eligible now — it could take a few months to sort out what's happening with this new health problem).

In earlier studies, Nitric Oxide has been shown to kill NTM and some other bacteria and break through biofilm.

The Gallipolli Research Centre at Greenslopes Private Hospital is managing it in Australia. It is strictly ONLY for medically-treated but Refractory (Unresponsive) NTM infections, and I think also for Cystic Fibrosis or COPD patients with unresponsive infections.

But I think this clinical trial is only based in two places: in Brisbane Australia and in the USA.

For participation in the trial in Australia, I think you'd need to live in Brisbane for a while because the trial requires you to become an admitted patient in the Greenslopes Private Hospital (free of cost) for 1 week. Then for two weeks, use BeyondAir's special nitric oxide machine 4 times each day (@40 minutes each time). Then use that machine twice per day (@40 minutes each time) for around 2 or 3 months..

A general phone number for Gallipoli Research Centre in Brisbane, Australia, is +61 7 3394 7284 if you need more information.

Hugs to you across the ditch, Annie x

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@anniepie

Thanks very much Heather @heathert.

It is the USA BeyondAir Clinical Trial (Nitric Oxide) based in Australia at Greenslopes Private Hospital in Brisbane. (It is also being run in the USA).

(I don't know if I will be eligible now — it could take a few months to sort out what's happening with this new health problem).

In earlier studies, Nitric Oxide has been shown to kill NTM and some other bacteria and break through biofilm.

The Gallipolli Research Centre at Greenslopes Private Hospital is managing it in Australia. It is strictly ONLY for medically-treated but Refractory (Unresponsive) NTM infections, and I think also for Cystic Fibrosis or COPD patients with unresponsive infections.

But I think this clinical trial is only based in two places: in Brisbane Australia and in the USA.

For participation in the trial in Australia, I think you'd need to live in Brisbane for a while because the trial requires you to become an admitted patient in the Greenslopes Private Hospital (free of cost) for 1 week. Then for two weeks, use BeyondAir's special nitric oxide machine 4 times each day (@40 minutes each time). Then use that machine twice per day (@40 minutes each time) for around 2 or 3 months..

A general phone number for Gallipoli Research Centre in Brisbane, Australia, is +61 7 3394 7284 if you need more information.

Hugs to you across the ditch, Annie x

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Hi Annie, I hope you get to go into the nitric oxide trial soon, breaking through the biofilm sounds great. Thank you so much for the information on it. I do not get tested again for 6 months so I would probably miss it also and like you say it is really for Aussies, not that I would mind living there for a bit!
I hope your new health issue is going well for you and I wish you all the best with it. Keep in touch and take care.
Huge Heather the Kiwi.

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