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Posts (134)

Sun, Jan 6 2:45pm · Big 3 and weight loss in MAC & Bronchiectasis

@erawl I am not on antibiotics and I am loosing weight. I'm 5'7" and weight 100 lbs. No appetite. I've tried counting calories but I cannot eat 3500 calories a day, which, I believe, is the number to gain a pound. I have trouble with dairy so eating pints of ice cream just makes me feel sick. Flib

Sun, Jan 6 2:36pm · Big 3 and weight loss in MAC & Bronchiectasis

@heathert What aare fortasip drinks. I continue to loose weight and have very little appetite.

Nov 23, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@hydrang3e I also ordered from N. Zealand. Took a while.Then I was home to sign for the delivery…wound up having to make trips to two different post offices, no luck and then the postman arrive again at my door and I was home. Pain in neck (being polite
however, the cough drops work. Amazon has a brand called Strephils….not as effective. I know now to order several boxes at a time to save on postage and time. Flib

Nov 20, 2018 · Have Bronchiectasis, recently diagnosed with pseudomonas in MAC & Bronchiectasis

@terri, I went to see a neurologist for my feet. She gave me a blood test, including vitamin B 6. Turns out my b6 level was so high it was toxic. It takes a year or two to eliminate…it is not soluble and gets stored in muscles. She told me to check labels, especially energy drinks which almost always have a lot of B6. That was about 7 months ago. I had a recent test; had to be sent to a lab in Virginia as B6 testing is not a routine blood works test. Three weeks later I got the results. I think a normal range was like 1.2 to 2.1…mine was 126. Really high. I'm wondering what a B protein is. High B6 is one of the causes of peripheral nephropathy. My primary doctor, very knowledgeable
had never herd of B6 toxicity. Just wondering if any Mayo buddies have vitamin or protein problems. Flib

Nov 18, 2018 · Working and holding a job while suffering from NTM (MAC) in MAC & Bronchiectasis

@haiku I too find all the coughing embarrassing That plus fatigue keeps me away for many social interactions. I hate the mucus, most especially when I get into bed, longing to sleep and I start coughing. I have to get up and bend over to help drain the mucus, sometimes 2or3 times. This happens most nights and takes the pleasure out of going to bed.I nebulizer twice a day, helps some. My cat scan regularly show very little progression of the MAC…I guess it's the bronchiectasis, in part that is causing the coughing. No body seems to really know..

Nov 11, 2018 · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@sueinmn My doctors say the same, you can pick up MAC any place, especially if you have bronc. I live in Cleveland. My garden now is all potted plants and I hire someone to tend them.

Nov 6, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@america It's so disappointing when your good days turn upside down because you're sick. Easy to feel angry and sometimes hopeless but if you plow ahead good days pop up again. This lousy disease requires a lot of attention and discipline. Took me forever to learn that. Hope you feel better soon.

Nov 3, 2018 · Hearing loss in MAC & Bronchiectasis

@heathert I loss some hearing in my left ear. My pulmonary doctor told me to stop taking the one drug I was on, arthomyacin. I had been on it less than half a year. The loss was rather quick. I noticed it but thought my ear was stopped up. After a week or so, I called her and she said get off the drug immediately. I did but the hearing never returned. She told me the med had killed nerves and not to expect it to get better. My concern now, many months later, is that it is getting worse. I'm having trouble knowing the direction of sounds and have to turn the volume up on tv. I'm having another hearing test later this month. I felt better on the med but I would trade that now for my hearing loss which is affecting my life. I think anyone who notices a change in hearing or sight, when on these drugs, should tell the doctors… don't be shy. .Flib