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Posts (97)

5 days ago · Ears, Nose, Throat, Arm??? in Infectious Diseases

@deedee2020 Well first off I’d like to say thank you for giving me my new favorite expression, “anywhoodles”. I am sorry to hear you are having these troubling symptoms. Have you done airway clearance for the day, both your lungs and sinuses?

Wed, Mar 11 10:31am · COVID-19 Coronavirus and Lung Health: What can you do? in COVID-19

@aeg73 Girl! I read your description of symptoms And couldn’t believe how many I share in common with you. I have Bronchiectasis, and I have m. Abscessus colonized in my sinuses and lungs, along with an ever growing list of various fungi & bacteria. I was diagnosed in 2015 following multiple pneumonias.

If it’s any help to you, I’ve been able to keep infections to about one per year since by daily use of an antibiotic and anti-inflammatory through my Navage nasal rinse device, as well as daily airway clearance using the vest, nebulizer with 7% saline and postural drainage in combination, as well as exercise. I still teach full time.

Like you I have also had the mysterious red ring of small bumps around my elbow, that came and went, they biopsied it and found nothing so called it “granuloma annulare”, the frozen shoulder, (always) neck problems, and now the pulsating muscle twitching/ spasms in my ribs on my sides and in my back non-stop for 1 month! The twitches are certainly not life threatening, and don’t keep me from sleeping, but MAN it gets old, and i have to think it’s a message from my body.

I would add gut issues, I experience at least 6 bad bouts of “gastroenteritis” a year. I started taking at least a Tbsp. of Miralax daily to keep things “moving”, and that barely does it.

– BTW Another patient commented she had the muscle twitches, and they found she had low magnesium. Praying for you and us all, Brenda.

Mon, Mar 9 7:31pm · COVID-19 Coronavirus and Lung Health: What can you do? in COVID-19

GREAT point. My “normal” basal body temp is 97.0, if I get to 98.3, I feel feverish. Try explaining that one to your average health professional! FINALLY Stanford University verified in a recent study average body temp is falling, and people who are very fit and healthy tend to have lower average body temp.

Mon, Feb 3 8:48am · My MAC and bronchiectasis treatment in MAC & Bronchiectasis

I started experiencing funny heart palpitations, so they had me wear a ZIO patch for 2 weeks, then had a radioactive isotope stress test. Thankfully it’s just tachycardia, and I am to ignore unless symptoms increase. I take Pulmicort 2x daily as an inhalant, and Gentamicin 1x daily, also as an inhalant. Have not had to start Big 3. I have m. Abscessus, MAC, MAI.

Thu, Jan 23 9:23am · It’s half past nine in Dallas in MAC & Bronchiectasis

At my house, we call it “Time to Make De Donuts”. Then when I finish, “I made De Donuts.” (Think Winchell’s Donut’s commercial, circa 1974.)

The only thing I hate more than 2x per day airway clearance, is being sick.

Fight on!!

Wed, Jan 15 10:35am · So many questions: How do I clean our home to prevent reinfection? in MAC & Bronchiectasis

Hugs to you both!! The caretaker role is a tough one!