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@katemn

@faithup
Sent on Sat, Mar 11, 2017 at 8:17 am

Hello Kate, I had been reading posts this morning. Im thrilled to find your blog. I do not routinely use social media. Therefore im not sure if I am connecting to the blog properly. If not please advise. I was diagnosed late December 2016. I have been on the 3 medications since New Years Day. I also have Sjogren's Syndrome. I am a nurse who has worked in a hospital setting x34 yrs. I read one can contract this from hospital water supllies (but who knows). I had also taken a supervisory role 2 yrs ago in which i was working 55-60+ hours per week. I believe i ran my autoimmune status crazy and weakened myself. I have now stepped down from my position to rest. I am startimg a part time position this week. I live in northwest Indiana. I spoke with one other MAC patient on the phone. She had it 7 years ago and has it again. She traveled to Jewish National in Colorado for care. I took a 4 week leave of absence at the beginning however lately i feel more tired at the present. I was taken off the Myambutol for two weeks due to hearing tones, fine motor shaking and locking onto a thought and dwelling on it. Now my infectious disease MD re-initiated the med stating its the best course. I do not cough up any sputum. I obtained an acapella valve to bresthe into with no results. I informed my infectious disease MD of this and he said i may not bring anything up. So much more to share. Will connect again. I hope all the Floridians feel better soon. Teach me how to enter the blog site. Thank you for your time and effort. P. S. I am following a "nutritarian diet" for the clean eating aspect. A book by author Dr. Joel Furhman has opened my eyes to many diet related health issues

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Dear @faithup .. do you have a first name .. more personal! I am SO glad you found us! I have moved your post to our main MAC and Bronchiectasis Forum because I want you to meet all our wonderful supportive and welcoming members! But also as you find time to read the past pages of the Forum you will find a wealth of information on our shared MAC disease .. tips and knowledge. You will be SO glad you learned more! Knowledge is power and truthfully by the end you are going to know more about our shared disease than a lot of doctors do!

I also do not use social media .. this is my one and only .. but it has been a life saver .. I have learned so much! You are correct .. NO ONE knows just how we get MAC .. and actually it doesn't matter .. all that matters is that you are being WISE in taking a less stressful work situation to take care of You! Jewish National is outstanding .. I go to Dr. Timothy Aksamit at Mayo Clinic, Rochester MN where there is also an outstanding team .. I have been blessed.

The Acapella did zero for me also. You said " I do not cough up any sputum. " I learned about the Aerobika airway clearance device here on the Forum. I have found it REALLY helpful in getting up the sputum. Remember .. the sputum can become a breeding ground for further mycobacterium. If I was you .. I would order one right away!

AEROBIKA
http://www.aerobika-therapy.com/order-today/
Members @decosmo and @maryjo2sell who have given great info about the Aerobika in the past.*Aerobika. I highly recommend it. I love mine. I have 2. They vibrate well to loosen the stuff and they are so much easier than an Acapella to clean. Always clean with distilled water or antibacterial dish soap and rinse VERY well. I have had mine for at least 2 years.

Also very helpful to increase lung capacity: Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com Read the reviews and how to use at https://www.amazon.com/Expand-A-Lung-Breathing-Fitness-Exerciser/dp/B00JWTRA5I

@faithup, tell us more about the " A book by author Dr. Joel Furhman has opened my eyes to many diet related health issues" .. we are big on sharing here on the Forum .. with the attitude "take what you need and leave the rest!"

@faithup, you said "Teach me how to enter the blog site." .. all you have to do now is when you receive this reply post .. just hit "View & Reply" .. the blue box at the bottom of the email .. and you will then be at HOME in our little supportive community! Sending you a welcoming Hug! Katherine

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Replies to "@faithup Sent on Sat, Mar 11, 2017 at 8:17 am Hello Kate, I had been reading..."

@katemn, first of all thank you for the time you take almost hourly to help everyone! You had mentioned the website to buy the Aerobika breathing device. There are several different types of things to buy on that website....which ones would be recommended. My name is Amy, and as I stated earlier this week, I will be starting the 3 meds on Tuesday. I currently have no inhaler of any kind, but my doctor is prescribing the Alcopella, which sounds like it may not be useful. Thank you for help once again! Amy