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1 day ago · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@ann0616…Welcome to the group.We're glad to hear you will be seeing a pulmonologist and hope that s/he is familiar with bronchiectasis and MAC. Prepare for your visit with copies of your records. If your medical journey is like mine, you have an asthma dr. a PCP and have visited emergency clinics often.Try to make a comprehensive narrative out of it. Also, I've found that the records don't always agree, so check the diagnoses. My clinic doesn't have any info from my specialists.Good luck and please keep us up-to-date.

1 day ago · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@cindyrue…I'd go with your gut on this one. Your intuition that there is more damage than just the bronchiectasis can give you the energy to make changes.
You need a thorough testing and diagnostic experience that National Jewish Hospital or Mayo Clinic can provide. If you are being followed by a pulmonologist, s/he is only concerned with the lungs. Get copies of all your records and CT scans so that whomever you consult will have all the information.
More info on your symptoms would help us help you. Could you describe your journey and symptoms?

Wed, Jan 2 6:09pm · Clearing of Mucus during/after an episode in MAC & Bronchiectasis

@jengelage…postural drainage is very helpful…there are pictures online which shows many positions, but knowing where the damage is located will help you choose position…my damage is lower right lobe and my position is left side to help mucus drain.

Dec 18, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@prelle1…You have been treated shabbily and deserve dignity and caring. We are here for you. I live too far away to recommend drs, but believe you will hear soon from someone who can help. Fatigue saps us of the energy to fight for ourselves. Can you get into see someone who will order bloodwork right away? There may be delays getting to see the pulmonary specialists at the best places like Mayo Clinic.
Anemia, vit D, thyroid, infection…..many more causes that can be fixed quickly. These are often associated with lung problems. (I've had them all)
Don't feel bad about not knowing what to ask for…so many doctors have not kept up with the best practices for MAC.
Good luck. You will get some answers soon.

Dec 4, 2018 · Legs hurt so bad in MAC & Bronchiectasis

@summer 33
I took the medicines with food and was on them for 14 months. I also took probiotics every day.

Dec 3, 2018 · Legs hurt so bad in MAC & Bronchiectasis

@summer33 … I found relief with acupuncture after using the big 3 for 14 months to get rid of MAC. No pain killers needed now. It is worth trying-I travel 60 miles to get it.

Dec 2, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@america…yes, also tooth erosion and vocal chord damage in my experience. Check out Dr. Jamie Koufman's work with chronic cough. She has several acid reflux books.

Dec 1, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@extratiredalway …It will get better.Listen to your body. Rest when you are tired. You may have to cut back on activities until the MAC has been wiped out, but you will feel better.After awhile I felt better on non-med days and planned my schedule accordingly.Please search through the discussion groups; they will help you find others with similar situations. I've been free of MAC for 4 years now and off oxygen, too.