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.

tdrell | @tdrell | Jan 10, 2018
In reply to @boomerexpert "@tdrell @jkiemen et al: Whether or not the Israeli NO study was successful (and I believe..." + (show)
@boomerexpert

@tdrell @jkiemen et al: Whether or not the Israeli NO study was successful (and I believe it was more so than stated here, either result leads to the clear indication of how much more research is needed...NJH is very disappointing with their focus on everything but MAC/NTM's...Do you have contact info for this Dr. Daly so we can contact him en masse?

Jump to this post

@boomerexpert....I see my ID dr ...Dr Huitt for 1 year follow up at NJH ON January 29....if folks want to send questions for me to ask her....please send. Tdrell

REPLY
grannyred | @grannyred | Jan 10, 2018
In reply to @grannyred "Hi. I am new to all of this and trying to understand everything. I am waiting..." + (show)
@grannyred

Hi. I am new to all of this and trying to understand everything. I am waiting for a new sputum test result and the worse is the waiting. I have not started any medications as yet as my doctor wants to see the new results before proceeding. I am very happy to have found this group as I always feel that knowledge is power but it can also be scary. Thank you all for your words of kindness and wisdom on this disease Anne

Jump to this post

I had a sputum test a year ago which showed MAC. Six months later it was negative. The doctors that I had at that time never discussed the results with me. I changed doctors and he told me all about the disease and ordered new sputum tests which I did this week. Now I am waiting for the results which should take 7 weeks. Previous doctor said I have bronchietasis and treated for only that. I am hoping new tests look ok. Of course, I am anxious. I cough a lot!!!
Thanks for the response
Anne

REPLY
terryb1 | @128128terry11t | Jan 11, 2018
In reply to @boomerexpert "@tdrell @jkiemen et al: Whether or not the Israeli NO study was successful (and I believe..." + (show)
@boomerexpert

@tdrell @jkiemen et al: Whether or not the Israeli NO study was successful (and I believe it was more so than stated here, either result leads to the clear indication of how much more research is needed...NJH is very disappointing with their focus on everything but MAC/NTM's...Do you have contact info for this Dr. Daly so we can contact him en masse?

Jump to this post

@tdrell Thank you for the opportunity to ask a question. What is the best way to clean and rinse aerobika and nebulizers? Must we rinse in either distilled or boiled water?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 11, 2018
In reply to @jkiemen "I get palpitations after eating and at times at night. It might be good to ask..." + (show)
@jkiemen

I get palpitations after eating and at times at night. It might be good to ask your MD for a heart monitor to wear and capture the episodes. I used one a while back but I was having them before I started the medications too. It happens off and on.

Jump to this post

@jkiemen , Hi Jo Ann, sometimes GERD can cause the heart palpitations. Mine used to cause it all of the time. Once I got the reflux under control, my heart has been well behaved.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 11, 2018
In reply to @jkiemen "Nov 27 17 AIT Therapeutics, Inc. announced that preliminary results from its NO-NTM Phase 2 study..." + (show)
@jkiemen

Nov 27 17
AIT Therapeutics, Inc. announced that preliminary results from its NO-NTM Phase 2 study in Nontuberculous Mycobacteria (NTM) targeting patients suffering from Mycobacterium Abscessus Complex (MABSC) indicate that the primary endpoint of safety was met, with no NO-related serious adverse events (SAEs) observed. The safety data, along with positive results in other key parameters, drive AIT’s decision to move the program forward and plan for a potential pivotal trial to begin in the United States in the second half of 2018. All patients in the trial were refractory to the standard-of-care for MABSC and had underlying cystic fibrosis. Patients were treated with inhaled NO in addition to background antibiotic therapy at the physicians’ discretion. NO was delivered at a concentration of 160ppm for 30 minutes intermittently for 21 days (5 times per day for 14 days and then 3 times per day for a subsequent 7 days), after which no further NO treatments were provided. As per the protocol, all patients will be followed for 81 days. Nine patients were enrolled in the study and all have completed the 21-day dosing schedule. Data presented below are through Day 51 (30 days post completion of treatment) for the endpoints of 6-minute walk (6MW) and forced expiratory volume (FEV1). The primary endpoint of safety, as well as the endpoints of mycobacterium abscessus (M. abscessus) load in sputum and quality-of-life (QoL), assessed at Day 21. The Company anticipates having all data collected by the end of the first quarter of 2018. The Company plans to continue developing its inhaled NO therapy for this indication and expects to begin enrollment in a potential pivotal study in the U.S. in the second half of 2018. With the proprietary NO generator technology, the Company believes it has the ability to deliver inhaled NO to the patient at home, beyond the 21-day treatment period used in the current trial. https://www.bloomberg.com/research/stocks/private/snapshot.asp?privcapId=266763185

Jump to this post

@jkiemen , Jo Ann, I have read on the NIH website that the NO does work, it is just too expensive to administer it. Bottom line is: it is not profitable.

REPLY
ling123 | @ling123 | Jan 11, 2018
In reply to @grannyred "Hi. I am new to all of this and trying to understand everything. I am waiting..." + (show)
@grannyred

Hi. I am new to all of this and trying to understand everything. I am waiting for a new sputum test result and the worse is the waiting. I have not started any medications as yet as my doctor wants to see the new results before proceeding. I am very happy to have found this group as I always feel that knowledge is power but it can also be scary. Thank you all for your words of kindness and wisdom on this disease Anne

Jump to this post

@grannyred I believe the coughing is the result of bronchiectasis, not of MAC. MAC is a mystery to me. People with healthy organs and immune system can have the bacteria live in their bodies and not be bothered by them. Even when people get infections from them, some can later on be tested negative without going through the drug regimen. How did your previous doctor treat you for bronchiectasis?

REPLY
joan912 | @joan912 | Jan 11, 2018
In reply to @grannyred "Hi. I am new to all of this and trying to understand everything. I am waiting..." + (show)
@grannyred

Hi. I am new to all of this and trying to understand everything. I am waiting for a new sputum test result and the worse is the waiting. I have not started any medications as yet as my doctor wants to see the new results before proceeding. I am very happy to have found this group as I always feel that knowledge is power but it can also be scary. Thank you all for your words of kindness and wisdom on this disease Anne

Jump to this post

My husband was first diagnosed with MAC, and then bronchiectasis. It turns out the bronchiectasis is fairly mild. He has never had a cough, though he does have excess sputum production. He has also much greater fatigue, which seems to be his most major complaint.

REPLY
ling123 | @ling123 | Jan 11, 2018
In reply to @boomerexpert "@franthony You just did! And welcome! And if you wish to post a reply to someone..." + (show)
@boomerexpert

@franthony You just did! And welcome! And if you wish to post a reply to someone specifically, just do what I did here and start with their @name

Jump to this post

@boomerexpert For us to get MAC from soil, isn't it because we inhale the bacteria that get into the air by soil being disturbed, like when gardening? Or is it through touching, such as after gardening you forget to wash your hands? But the latter does not make too much sense to me.

REPLY
grannyred | @grannyred | Jan 11, 2018
In reply to @grannyred "Hi. I am new to all of this and trying to understand everything. I am waiting..." + (show)
@grannyred

Hi. I am new to all of this and trying to understand everything. I am waiting for a new sputum test result and the worse is the waiting. I have not started any medications as yet as my doctor wants to see the new results before proceeding. I am very happy to have found this group as I always feel that knowledge is power but it can also be scary. Thank you all for your words of kindness and wisdom on this disease Anne

Jump to this post

i was given a nebulizer with sodium chloride solution, a flutter device and told to huff cough. That's it. Ct scans were clear so the last contact he had with me was feb 2017. That's why I got s new medical plan. This new possibility is very scary right now. Can't wait to see what the sputum tests show. Waiting is awful. Thanks for the info above. With this group I don't feel so alone!

REPLY
boomerexpert | @boomerexpert | Jan 11, 2018
In reply to @boomerexpert "@franthony You just did! And welcome! And if you wish to post a reply to someone..." + (show)
@boomerexpert

@franthony You just did! And welcome! And if you wish to post a reply to someone specifically, just do what I did here and start with their @name

Jump to this post

@ling123 unknown although makes the most sense...but what is known is the main distinguishing factor of MAC vs TB is that TB is spread person to person via air thus the reason for the reporting requirement vs MAC contracting via inhaling water vapor and somehow via soil...apparently how one gets it determines how "dangerous" it's considered vs the harm it does...goofy, eh?

REPLY
View MoreView Less
Please sign in or register to post a reply.