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1 day ago · COVID-19 in MAC & Bronchiectasis

@kathyhg …In addition to the usual protections for influenza, I avoid winter doctor visits and crowded areas. I no longer shake hands and use hand sanitizer in the car after visiting every site. If the community infections grow, I'll wear my mask everywhere and postpone visits with grandchildren until summer.


@lynn55.. I found relief from constant cough through acupuncture treatment of nerves. My Dr figured that half my cough was due to irritated nerves and the treatment worked. I use nebulizer asthma treatments and GERD treatments plus sleep upright. No exacerbations for 2 years.

Mon, Feb 3 7:29am · Weight gain while on MAC meds in MAC & Bronchiectasis

@tinaesims… Yes! My doctor says it's the steroids and hormones. I'm 71 and had constant lung infections over 5 years until I got a clear diagnosis of NTM and bronchiectisis and started sleeping upright to reduce acid reflux. I take 3 asthma meds in the nebulizer twice a day. I have PPIs and Zantac by prescription and special diet.I have hypothyroidism, too.
I went on many doctor approved diet and exercise programs and I gained weight. I eat very little and gain weight
.I've tried fasting and get low blood sugar trouble.
Finally Ive gone on the intermittent fasting diet that allows tea and coffee with cream or butter in fasting hours. It's called "Cruise control". No more drop in blood sugar and the weight is creeping off a few ounces a day. I lost 9 pounds in 5 weeks. It's Keto so I can only stay on it for three months.

I recommend getting thyroid levels checked first, then take a look at various fasting regimens.
I know how discouraging it is to have your weight out of your control. Don't give up! New solutions to our problems are being developed every day.

Wed, Jan 8 1:59pm · Acupuncture and chronic cough in MAC & Bronchiectasis

@tinaesims…I have had acupuncture treatments about once a week and found them very helpful. My cough had been constant, but is now rare at times other than postural drainage and nebulizer treatments. Cupping also helped when my lungs were full of fluid.


@lindham272…Hi Linda, I use Phillips respironics for 45 and 30 minutes a day. Medicare pays for one every 5 years, but I bought my own after it broke at 4 years.

Dec 8, 2019 · Tingling and numbness in arms and legs related to MAC? in MAC & Bronchiectasis

@kathyhg…I experienced all of the symptoms you mentioned in addition to chest pains and muscle spasms around the bra line. I found relief from acupuncture. My nerves become agitated and acupuncture worked to calm them. I still get numbness and muscle spasms, but they are not as strong or frequent. I also take magnesium. Has your sister had her O2 level checked while moving? Mine was fine while sitting in doctor's office, so I had no idea it dropped too low until my acupuncturist said my face showed lack of O2 and to get a test at doctor's office.After 2 yrs on O2 tanks, I am now breathing well on my own.

Aug 12, 2019 · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

@adah….I'm glad to hear you've found another doctor for your son. Some doctors are as biased and pessimistic about mental challenges as the ordinary citizen. Your advocacy for your son will help others. Is there a rare disease support group where you can share your story?

Jul 30, 2019 · MAC nodules in MAC & Bronchiectasis

@bennb023 …That's good to hear! Please tell us how you have managed this.