(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.

@alleycatkate

@pfists. Hi Sharri...I have pulled up and have been reading all of your past posts as I am interested in the Bidens and Cryptolepsis for preventative measures. I am asymptomatic for MAC....just diagnosed about month ago. I see you went from pos to negative. Do you still feel that you are getting great results with these two tinctures?? Any more you can say about them? I also noticed you mentioning licorice and, shoot, now I forgot the other one but it sounded like it was for Gerd? I am have my shopping cart sitting with the two tinctures and thought I would touch base with you before I ordered. I am feeling like a bit of a maniac with ordering many alternative measures...but, if they bring success, why not? I've always gone the alternative route anyway. Thanks for any input. Kate

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@alleycatkate the little flapper thing lol I like that ! I know you understood what I meant .  Use the good one. I think you can only get it on the internet. It is made in Canada. 

https://goodnessme.ca/products/hubner-milk-thistle-500ml. I haven’t find it in the United State. Take the right one. Nick

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@boomerexpert where to you get your CBD oil

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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Hi, @boomerexpert - Are you using CBD oil for your MAC or RA? If MAC, how does that help? I have wondered about it and haven't heard anyone using it for issues like ours until now. Thanks! Linda M

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@boomerexpert - Hi there! I have Bronch, MAC avium in lungs, NTM abscessus in sinuses. Have not had to start 3 drug regimen. Can I ask you what does the CBD oil help with?

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@brigby as you've noted I also have RA...CBD reduces inflammation...if you know you have inflammation as a result of your lung conditions, this will help.

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Anyone...Question on Clear Lung by Ridgecrest. Do most using this preparation use it continually or do you just use as needed for breathing difficulties, colds, excess phlegm... etc? Thanks for thoughts on this.

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@boomerexpert -Thank you so much. God Bless you and keep you well.

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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Thanks so much Unicorn. I feel really happy to hear and know that I’m not alone. I also have RA and Sjogrens and it’s tough to deal with so many things at the same time. But I know it’s going to get better with time and talking with you all. I’m so excited to be a part of this. I would love to try anything new so I’m open to new ideas. Thanks.

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@jkiemen

@america You came to the right place. We all understand about the disease and all have similar but yet different stories and severity of illness. It impacts your physical and emotional health. Some of us are on the Medications, some tolerate and others do not. Tell us more about yourself. How did you discover it, how advanced was it, what meds where you on?. What are you doing for treatment now?

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Thanks nick52

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@jkiemen

@america You came to the right place. We all understand about the disease and all have similar but yet different stories and severity of illness. It impacts your physical and emotional health. Some of us are on the Medications, some tolerate and others do not. Tell us more about yourself. How did you discover it, how advanced was it, what meds where you on?. What are you doing for treatment now?

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AIT Therapeutics Announces Human and In-Vitro Nitric Oxide Data to be Presented at the 3rd Annual World Bronchiectasis Conference

Two presentations to highlight the direct killing effect of nitric oxide and the use of the nitric oxide generator and delivery system as a potential therapy for Mycobacterium abscessus complex (MABSC) lung infection

NEW YORK, June 27, 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 that in-vitro data as well as data from a compassionate use study will be presented at the 3rd Annual World Bronchiectasis Conference being held at Georgetown University in Washington, D.C. on July 12-14, 2018.

“The nitric oxide used to treat the cystic fibrosis patient with refractory MABSC came from our proprietary NO generator and delivery system. Our in-vitro data provide valuable confirmation of the direct killing power of NO,” said Steven Lisi, Chairman and Chief Executive Officer of AIT Therapeutics. “With our NO generator and delivery system successfully used in a real-world setting, we are well on our way to effectively treat patients in their homes for chronic, severe, refractory bacterial lung infections.”

The first poster, entitled: “High-Dose Inhaled Nitric Oxide as a Potential Therapy Against Mycobacterium abscessus Lung Infection in Cystic Fibrosis,” demonstrates the antibacterial activity of exogenous NO against multi-drug resistant Mycobacterium abscessus clinical strains in vitro.

The second poster, entitled: “Treatment of Refractory Mycobacterium abscessus Lung Infection with Inhaled Intermittent Nitric Oxide,” demonstrates inhaled nitric oxide was associated with clinical improvement but not microbiologic improvement in a cystic fibrosis patient with refractory Mycobacterium abscessus infection and may be a viable treatment option.

Both posters will be available for viewing on Friday, July 13 at 11:45 a.m. to 1:20 p.m., and then again from 3:45 p.m. to 5:00 p.m.

About Mycobacterium abscessus complex (MABSC) of the Lungs
MABSC is the most aggressive and difficult to treat species of nontuberculous mycobacteria (NTM). There are currently no approved treatments for MABSC. Current standard-of-care is a cocktail of antibiotics that often proves to be ineffective with severe adverse effects. Most patients suffering from MABSC have an underlying disease, such as cystic fibrosis or chronic obstructive pulmonary disease (COPD). The median survival of those suffering from MABSC is less than 5 years.

About Nitric Oxide (NO)
Nitric Oxide (NO) is a powerful molecule proven to play a critical role in a broad array of biological functions. In the airways, NO is believed to play a key role in the innate immune system at concentrations of approximately 200 ppm. In vitro studies suggest that NO possesses anti-microbial activity not only against common bacteria, both gram-positive and gram-negative, but also against other diverse organisms including mycobacteria, fungi, yeast and parasites, and has the potential to eliminate multi-drug resistant strains.

About the 3rd Annual Bronchiectasis Conference
The Conference is a focused, cutting-edge gathering of the world’s experts on bronchiectasis and nontuberculous mycobacterial lung infections. Highlights of the conference include presentations of the most up to date research on disease mechanisms in bronchiectasis, including new understandings on the role of inflammation, infection and the microbiome. Clinical topics will include sessions on the diagnosis and treatment of bronchiectasis and NTM infections, including small group, case-based presentations specifically aimed at understanding the role of airway clearance, anti-inflammatory treatments and antibiotics.

About AIT Therapeutics Inc.
AIT Therapeutics Inc. is a clinical-stage medical device and biopharmaceutical company using nitric oxide (NO) to treat respiratory and other diseases. The Company is currently applying its therapeutic expertise to treat lower respiratory tract infections that are not effectively addressed with current standards of care, as well as pulmonary hypertension, in various settings. AIT Therapeutics is currently advancing its revolutionary NO Generator and Delivery System in clinical trials for the treatment of bronchiolitis and severe lung infections such as nontuberculous mycobacteria (NTM). For more information, visit http://www.AIT-Pharm.com.

Forward-Looking Statement
This press release contains “forward-looking statements.” Forward-looking statements include statements about our expectations, beliefs, or intentions regarding our product offerings, business, financial condition, results of operations, strategies or prospects. You can identify such forward-looking statements by the words “expects,” “intends,” “plans,” “projects,” “believes,” “estimates,” “likely,” “goal,” “assumes,” “targets” and similar expressions and/or the use of future tense or conditional constructions (such as “will,” “may,” “could,” “should” and the like) and by the fact that these statements do not relate strictly to historical or current matters. Rather, forward-looking statements relate to anticipated or expected events, activities, trends or results as of the date they are made. Because forward-looking statements relate to matters that have not yet occurred, these statements are inherently subject to risks and uncertainties that could cause our actual results to differ materially from any future results expressed or implied by the forward-looking statements. These forward-looking statements are only predictions and reflect our views as of the date they are made with respect to future events and financial performance. Many factors could cause our actual activities or results to differ materially from the activities and results anticipated in forward-looking statements, including risks related to: our approach to discover and develop novel drugs, which is unproven and may never lead to marketable products; our ability to fund and the results of further pre-clinical and clinical trials; obtaining, maintaining and protecting intellectual property utilized by our products; our ability to enforce our patents against infringers and to defend our patent portfolio against challenges from third parties; our ability to obtain additional funding to support our business activities; our dependence on third parties for development, manufacture, marketing, sales, and distribution of products; the successful development of our product candidates, all of which are in early stages of development; obtaining regulatory approval for products; competition from others using technology similar to ours and others developing products for similar uses; our dependence on collaborators; and our short operating history. We undertake no obligation to update, and we do not have a policy of updating or revising, these forward-looking statements, except as required by applicable law.

CONTACT
Steven Lisi, Chief Executive Officer
AIT Therapeutics, Inc.
Steve@AIT-Pharm.com

Bob Yedid
LifeSci Advisors, LLC
Bob@LifeSciAdvisors.com
(646) 597-6989

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