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!

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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 Support Group.

unicorn | @unicorn | Jun 13, 2018
In reply to @yayaaz "My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It..." + (show)
@yayaaz

My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It was not as serious until recently. She was diagnosed with MAI/MAC a couple of days ago and will see her doctor tomorrow for treatment. Her doctor told her Medicare/Medicaid won’t cover the treatment. The doctor will send a letter asking for a hearing to allow her to have the medicines needed. Do you have any other ideas that might be helpful? She will not have the money to pay out of pocket for the lengthy treatment.
Also, I’m concerned how she will withstand the treatment.
Thank you for listening and for your help.

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Pivotal study expected to commence in the fourth quarter of calendar year 2019

NEW YORK, June 13, 2018 (GLOBE NEWSWIRE) -- AIT Therapeutics, Inc. (OTC:AITB), a clinical-stage medical device and biopharmaceutical company focused on developing inhaled Nitric Oxide (NO) for the treatment of patients with respiratory conditions including serious lung infections and pulmonary hypertension, today announced positive top line results from its Nitric Oxide in Bronchiolitis (NO-BRO) Pilot study. Given these positive results, a pivotal study is expected to commence in the fourth quarter of calendar year 2019.

“Nitric oxide has once again been shown to improve the condition of patients with lung infections when delivered at a high concentration,” said Steven Lisi, Chairman and Chief Executive Officer of AIT Therapeutics. “Our pivotal study in bronchiolitis patients, anticipated to start in the fourth quarter of calendar year 2019 and to complete in the second quarter of calendar year 2020 in the United States, will be performed using our proprietary nitric oxide generator and delivery system. Reducing length of hospital stay in bronchiolitis patients benefits not only the patient and the parents, it reduces cost to the hospital as well.”

REPLY
heathert | @heathert | Jun 13, 2018
In reply to @yayaaz "My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It..." + (show)
@yayaaz

My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It was not as serious until recently. She was diagnosed with MAI/MAC a couple of days ago and will see her doctor tomorrow for treatment. Her doctor told her Medicare/Medicaid won’t cover the treatment. The doctor will send a letter asking for a hearing to allow her to have the medicines needed. Do you have any other ideas that might be helpful? She will not have the money to pay out of pocket for the lengthy treatment.
Also, I’m concerned how she will withstand the treatment.
Thank you for listening and for your help.

Jump to this post

Great that the nitric oxide is doing so well but so far away, wish it was this year.

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lindam272 | @lindam272 | Jun 13, 2018

Ugh! Just received a call from my doc that my 5/30 culture came back showing Pseudomonas Aeruginosa growth. He is starting me on inhaled tobrymicin along with my normal saline neb treatments 2x day. Seriously not happy right now. Linda

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5 replies
auntnanny | @auntnanny | Jun 13, 2018

lindam272 I just did a sputum test and results are the same as yours. I'm on 500 oral cipro. I have taken this previously (late last year) and it worked very well. Am hoping for the same results this time. Best to you and I've read tobrymicin is an excellent drug. Have not yet used that one.

REPLY
2 replies
heathert | @heathert | Jun 13, 2018

Sorry to hear that @lindam272 and @auntnanny. Good to hear that oral Cipro does the trick and im sure tobrymicin will do also.

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Jo Ann K | @jkiemen | Jun 13, 2018
In reply to @lindam272 "Ugh! Just received a call from my doc that my 5/30 culture came back showing Pseudomonas..." + (show)
@lindam272

Ugh! Just received a call from my doc that my 5/30 culture came back showing Pseudomonas Aeruginosa growth. He is starting me on inhaled tobrymicin along with my normal saline neb treatments 2x day. Seriously not happy right now. Linda

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@lindam272 I am sorry to hear that. Just when you think things are going OK.

REPLY
nick52 | @nick52 | Jun 13, 2018
In reply to @yayaaz "My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It..." + (show)
@yayaaz

My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It was not as serious until recently. She was diagnosed with MAI/MAC a couple of days ago and will see her doctor tomorrow for treatment. Her doctor told her Medicare/Medicaid won’t cover the treatment. The doctor will send a letter asking for a hearing to allow her to have the medicines needed. Do you have any other ideas that might be helpful? She will not have the money to pay out of pocket for the lengthy treatment.
Also, I’m concerned how she will withstand the treatment.
Thank you for listening and for your help.

Jump to this post

@yayaaz wow! Bronchiectasis is dangerous to catch bacteria.  I have bronchiectasis and a MAC but never taken any antibiotic for it because my Dr says it hasn’t proven successful. I got rid of my MAC with natural product such as PROBIOTICS, to get more good

bacteria to fight bad ones, Clear lung to help decongest my lungs.  You want to try to thicken her liquid since it is very commun on elderly to swallow liquid in the lung tube.  Check on the internet for deglutition video on you tube. It might give you more

clues.  Dr do not explore that too often so you and her would know. The radiologist told me bronchiectasis can be cause by deglutition problem. Check it out! Nick

REPLY
yayaaz | @yayaaz | Jun 13, 2018
In reply to @yayaaz "My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It..." + (show)
@yayaaz

My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It was not as serious until recently. She was diagnosed with MAI/MAC a couple of days ago and will see her doctor tomorrow for treatment. Her doctor told her Medicare/Medicaid won’t cover the treatment. The doctor will send a letter asking for a hearing to allow her to have the medicines needed. Do you have any other ideas that might be helpful? She will not have the money to pay out of pocket for the lengthy treatment.
Also, I’m concerned how she will withstand the treatment.
Thank you for listening and for your help.

Jump to this post

Thank you Nick.
I will check it out. Today the doctor said he was not going to put my aunt on the medications he wanted to. He said he was going to research some other things for her. My aunt has multiple myeloma as well, and doesn’t want treatment for that as she is 89 years old. However, I will definitely check out the probiotic angle.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 14, 2018
In reply to @auntnanny "lindam272 I just did a sputum test and results are the same as yours. I'm on..." + (show)
@auntnanny

lindam272 I just did a sputum test and results are the same as yours. I'm on 500 oral cipro. I have taken this previously (late last year) and it worked very well. Am hoping for the same results this time. Best to you and I've read tobrymicin is an excellent drug. Have not yet used that one.

Jump to this post

@auntnanny

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 14, 2018
In reply to @lindam272 "Ugh! Just received a call from my doc that my 5/30 culture came back showing Pseudomonas..." + (show)
@lindam272

Ugh! Just received a call from my doc that my 5/30 culture came back showing Pseudomonas Aeruginosa growth. He is starting me on inhaled tobrymicin along with my normal saline neb treatments 2x day. Seriously not happy right now. Linda

Jump to this post

@lindam272 Hi Linda. It really stinks to get that kind of news. Please try not to stress too much about it, for most of us; pseudomonas is easy to knock out. The tobramycin and saline nebs should take care of it. Will this be your first time on tobramycin?

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