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Posts (6)

Aug 8, 2017 · Good MAI diagnostic/treatment facilities in MAC & Bronchiectasis

You could apply to the NIH (Bethesda) to be a part of their study of bronchiectasis and NTM. Several of the best physicians in the country are there. Another very experienced research physician / pulmonologist is at Georgetown University, Anne O’Donnell. You are in a good area to find great physicians. Look on NTMinfo.org, go to patient tab, then to physician referral.

Aug 4, 2017 · Good MAI diagnostic/treatment facilities in MAC & Bronchiectasis

The following physician is an expert in this condition. She was recently in Washington DC at a patient / physician conference for our condition. I saw her speak. I know she is very involved. If you haven’t gone on NTMinfo website, (physician referral) it is a good place to view your options. Penn Lung Center is listed as well.

Lankenau Medical Center
100 Lancaster Avenue, MOB West, Suite 230
Wynnewood, PA 19096
Tel 610-642-3796

Jun 21, 2016 · I was recently diagnosed with Bronchiectasis. in MAC & Bronchiectasis

Wow, your doctors are prescribing some very holistic things…garlic and turmeric, thats awesome. I take turmeric and eat a lot of garlic. I’m a big believer in boosting the immune system. Since I don’t know how progressed your bronchiectasis is, it’s hard to advise and I’m not a doctor. Sounds like you have some good docs. I would definitely step up the exercise to clear out your lungs and boost your immune system, and, I would ask your doctors about pulmonary clearance. I am a big believer in pulmonary hygiene. I think this might help prevent bronchiectasis progression. Get the gunk out of your airways so it can’t start an infection which in turn leads to bronchiectasis progression. My opinion.

Jun 20, 2016 · I was recently diagnosed with Bronchiectasis. in MAC & Bronchiectasis

Hi Katherine, No please share. I was a patient advocate / educator for 3 years in the Alpha-1 community. I know a bit about this disease, and, the other diseases that tag along with it….like bronchiectasis, MAC, etc. I HIGHLY recommend anyone with bronchiectasis, or NTM / MAC to be tested for Alpha-1 – it is a susceptibility factor for bronchiectasis and NTM. Almost all pulmonologist have access to free testing for Alpha-1 through the drug companies. They provide a free test kit and results. It costs nothing to the patient or the doctor. Ask for it. Please contact me by private message if you need help. I DO NOT work for any company. Can’t post my email as this site won’t allow it. Not sure why…..

Jun 20, 2016 · I was recently diagnosed with Bronchiectasis. in MAC & Bronchiectasis

I was fortunate to have been diagnosed early, 2006, at age 47, the bronchiectasis was mild to moderate, I was asymptomatic, but I had NTM/ MAC. A year later I got into a study at the NIH where I found out that I was also an Alpha (ZZ) Again, fortunately, pretty much asymptomatic for Alpha-1. I was on the cocktail of 3 – 4 antibiotics for over 6 years, but kept culturing positive for MAC and my bronchiectasis was starting to progress. I got into the clinical trial for Arikayce in 2013. I immediately started culturing negative for NTM. I highly recommend for anyone with NTM and not responding to the standard drugs to reach out to the 3rd phase of this clinical trial. You can call 866-825-3418 for information. I really believe inhaled therapy can be very effective.

Jun 20, 2016 · I was recently diagnosed with Bronchiectasis. in MAC & Bronchiectasis

Hi mmteach,
Pulmonary hygiene is very important with bronchiectasis as Katherine mentioned. Getting a nebulizer and inhaling hypertonic saline solution is very helpful in thinning secretions, coughing it out, preventing infection. I have bronchiectasis and had MAC. I try to do it at least once a day along with regular exercise. Also, as mentioned above by turtle, there is great info on the bronchandNTM360social site sponsored by the COPD foundation. I go there regularly. They also have a hotline you can call along with educational information on the site. The more we can educate ourselves, be our own advocates, the better our health. Hope this helps. Laura