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.

Jo Ann K | @jkiemen | Jan 10, 2018
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

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I am in Walworth County Wisconsin. Please tell him all about the Studies with Nitric Oxide and there was the one being done in Germany to attack the mycobacterial cell wall to get the antibiotics in there better. I am sure they do allot of research. Keep us posted.

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tdrell | @tdrell | Jan 10, 2018
In reply to @jkiemen "I wrote the FDA and the CDC. The CDC to see why they can't track this..." + (show)
@jkiemen

I wrote the FDA and the CDC. The CDC to see why they can't track this better and feed the information to the drug and device companies. They use Nitric Oxide for Pulmonary Hypertension. Would the Pulmonologist work with a Cardiologist to use it off label?? I don't know. There are compassionate use programs but the Device and Drug company have to agree too. Is there any place in Europe that is actively doing something???? We need more advocates. It seems like Jewish National and the University of Texas are the major players in this. Does anyone go there that knows how to get us the data we need or how to get into a program if research is our only new option right now.

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@jkiemen ...at October NTM workshop for patients at NJH, I asked Dr Daley and panel re Nitric Oxide and their thoughts...he seemed tepid ...quoted Israeli study which if I recall was 1 person after use had no NTM... the other still had it! Tdrell

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tdrell | @tdrell | Jan 10, 2018
In reply to @unicorn "Hi all: Just wondering if anyone else is experiencing rapid and erratic heartbeat? I am afraid..." + (show)
@unicorn

Hi all: Just wondering if anyone else is experiencing rapid and erratic heartbeat? I am afraid the MAC, and MAC pills, gerd, and hiatal hernia (caused by the pills) did something to my heart. I think it is all related and it is scary.
At night, when I lay down, and my tummy wants to crawl up into my throat, my heart gets affected I think. Rapid erratic beating and seems to be getting worse. No one in my family has had heart attacks, but no one else had this disease. I know I should go to cardiologist but I don't want anything else wrong with me!! Enough is enough. Cheers, Christa

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@unicorn...are you avoiding sleeping on stomach and right side? Part of Gerd precautions. Also use several pillows or elevate head of bed.
Of course do all the recommended Cardiac suggestions!! Tdrell

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Jo Ann K | @jkiemen | Jan 10, 2018

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

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3 replies
tdrell | @tdrell | Jan 10, 2018
In reply to @unicorn "Hi all: Just wondering if anyone else is experiencing rapid and erratic heartbeat? I am afraid..." + (show)
@unicorn

Hi all: Just wondering if anyone else is experiencing rapid and erratic heartbeat? I am afraid the MAC, and MAC pills, gerd, and hiatal hernia (caused by the pills) did something to my heart. I think it is all related and it is scary.
At night, when I lay down, and my tummy wants to crawl up into my throat, my heart gets affected I think. Rapid erratic beating and seems to be getting worse. No one in my family has had heart attacks, but no one else had this disease. I know I should go to cardiologist but I don't want anything else wrong with me!! Enough is enough. Cheers, Christa

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@jkiemen....I use OTC Zantac....150mg for my GERD first thing in morning and at night sometimes. I use TUms and Gaviscon chewable for break Thru indigestion as needed. But I also am monitored by my Cardiologist once or twice a year to be sure the chest pain is not cardiac since I had a cclised coronary artery 3 years ago....my symptom for that was extreme fatigue. Tdrell

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pkayh | @pkayh | Jan 10, 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.

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excellent suggestion to see an MD about wearing a heart monitor to check on palpitations.
Pat

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boomerexpert | @boomerexpert | Jan 10, 2018

@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?

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7 replies
unicorn | @unicorn | Jan 10, 2018
In reply to @unicorn "Hi all: Just wondering if anyone else is experiencing rapid and erratic heartbeat? I am afraid..." + (show)
@unicorn

Hi all: Just wondering if anyone else is experiencing rapid and erratic heartbeat? I am afraid the MAC, and MAC pills, gerd, and hiatal hernia (caused by the pills) did something to my heart. I think it is all related and it is scary.
At night, when I lay down, and my tummy wants to crawl up into my throat, my heart gets affected I think. Rapid erratic beating and seems to be getting worse. No one in my family has had heart attacks, but no one else had this disease. I know I should go to cardiologist but I don't want anything else wrong with me!! Enough is enough. Cheers, Christa

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thank you, It's ok I don't take any other drugs

REPLY
unicorn | @unicorn | Jan 10, 2018
In reply to @unicorn "Hi all: Just wondering if anyone else is experiencing rapid and erratic heartbeat? I am afraid..." + (show)
@unicorn

Hi all: Just wondering if anyone else is experiencing rapid and erratic heartbeat? I am afraid the MAC, and MAC pills, gerd, and hiatal hernia (caused by the pills) did something to my heart. I think it is all related and it is scary.
At night, when I lay down, and my tummy wants to crawl up into my throat, my heart gets affected I think. Rapid erratic beating and seems to be getting worse. No one in my family has had heart attacks, but no one else had this disease. I know I should go to cardiologist but I don't want anything else wrong with me!! Enough is enough. Cheers, Christa

Jump to this post

Yes I do it all, doesn't matter anymore

REPLY
boomerexpert | @boomerexpert | Jan 10, 2018
In reply to @jkiemen "I wrote the FDA and the CDC. The CDC to see why they can't track this..." + (show)
@jkiemen

I wrote the FDA and the CDC. The CDC to see why they can't track this better and feed the information to the drug and device companies. They use Nitric Oxide for Pulmonary Hypertension. Would the Pulmonologist work with a Cardiologist to use it off label?? I don't know. There are compassionate use programs but the Device and Drug company have to agree too. Is there any place in Europe that is actively doing something???? We need more advocates. It seems like Jewish National and the University of Texas are the major players in this. Does anyone go there that knows how to get us the data we need or how to get into a program if research is our only new option right now.

Jump to this post

We must all lobby the CDC and NJ

REPLY
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