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16 hours ago · The vagaries of this ailment: How MAC changes without fanfare in MAC & Bronchiectasis

Lol. I meant that you were strong willed, carrying on with your 7% despite its troublesome effects. Weakling me gave up and am using 3%. I'm going to try 7% again tomorrow morning because I want a goodly amount to send to Texas.

18 hours ago · Do I have to use the Aerobika on the highest setting? in MAC & Bronchiectasis

Hmm. I was told it was not covered by insurance – Medicare. My doctor told me an acappella she prescribed (similar device but not as good imo) was covered but I finally paid for it myself. My first aerobika was given to me by a pulmonologist when they first came out in 2014. I purchased a second one online. You don't need a prescription but if insurance will cover it then it makes sense to get one.

My decrepit lungs cannot do anything above the second lowest setting.

2 days ago · I can stop MAC antibiotics in June! in MAC & Bronchiectasis

I need to send a sputum sample to Dr McShane at Tyler. They sent me a "cup" with my info on it and a tin can which has a plastic biohazard container inside. The instructions are to take it to the post office and pay $3 to send it. I may be able to avoid the post office because we have a receiving room in my building and I have sent Fed Ex from there. I'm pretty sure I can send it through just about any carrier through them. I'm reluctant to even go to the receiving room during this plague but I need to have my sputum checked for what Dr. McShane calls "organisms".

I believe some (many) of you have sent samples to Mayo or elsewhere. Do you just send the tin can? Or do I need a US mail or Fed Ex envelope?

Any advice would be greatly appreciated. Thank you.

5 days ago · The vagaries of this ailment: How MAC changes without fanfare in MAC & Bronchiectasis

Thanks for the suggestion. Trust me, I have been through alternatives as well as cutting back on the amount of steroid, i.e. Symbicort has a formula with only half as much steroid but the full amount of bronchodilator. I have severe chronic bronchitis ( copd) which means severe airway inflammation. I cannot function at all without the steroid.

Even with the steroid, I am MAC free right now.

5 days ago · The vagaries of this ailment: How MAC changes without fanfare in MAC & Bronchiectasis

Sorry to hear this Thumper. You are one strong guy. I have a similar reaction to 7% which is why I do 3%. Even with 3%, after running for a bit, my nose and sinuses get plugged up and my eyes run. As soon as I stop, i cough a bit and then the shortness of breath kicks in which lasts until I take Symbicort about an hour later. My doctor hates that I take Symbicort because one of the drugs in it is a steroid and bacteria grow in steroids. But what good is it if I have no bacteria but I can't breathe? Once the Symbicort kicks in, I'm good to go until the next treatment. Bah! Humbug!

Wed, Mar 18 9:58am · I can stop MAC antibiotics in June! in MAC & Bronchiectasis

I lasted two doses of rifampin before having a very bad reaction. There are ongoing studies designed to show whether rifampin is necessary. My doctor told me that it was too late for her to enroll me in the study but she was so sure if the outcome that she did not substitute a third drug. Until the studies conclude whether rifampin is required, the protocol calls for three drugs.

I think most patients start with 3x per week but if that doesn't work after a period of time, we are moved to 7 days. Another drug like amakacin or more recently Arikayce may be added.

Good luck to you. I hope the drugs work quickly for you.

Wed, Mar 18 9:08am · I can stop MAC antibiotics in June! in MAC & Bronchiectasis

Hi all, i just received my test results for the sputum sample I left at my pulmonologist’s on January 29. Acid fast bacilli is negative and no growth for 42 days! I have been taking azithromycin and ethambutol 3x per week since March (2019) and had my first negative two months later in June. I took Arikayce 3x per week from August to December. I hadn’t been tested since October and my doctor had reduced my azithromycin dosage back then so this news is a relief!

If this darn virus horror is over by June, I am considering a road trip to Tyler to see Dr Mcshane who has treated me throughout my MAC ordeal when she was here in Chicago. Due to colon issues, flying would be a tremendous challenge.

It’s something to look forward to while I’m beating myself up for spending the last few days lying around. Except for walking the dog 3x a day, I’m staying home. You too? I have a thousand chores to do around here but am so lazy! Can’t get off my butt! I hope everyone is doing well. Thanks for all the support. Rita