New Diagnosis of MAC/MAI & I'm scared

@heathert Thanks! Do you make your own saline solution? If not, where do you get it? I've been making my own nasal flush solutions from sea salt and distilled water. (Btw, there were other aspects to the article, but they didn't seem as relevant to our discussion here.)

@tinaesims When I asked my pulmonologist about nebulizing he said absolutely not. Then I read Windwalker's message saying that her Dr thinks all MAC patients should nebulize 7% saline. I then found the above article that I posted along with a few others that I read and decided that I need to nebulize. Sometimes you will need to be your own advocate as some Doctors and nurses, though well intended, do not have the up to date information or are just plain wrong. I am a big proponent of research. Anyway, I decided my pulmonologist was dead wrong and began nebulizing. I cannot tell you what an immense difference it made in my breathing. I subsequently have made an appointment with Windwalker's Dr for a second opinion on my status... Sometimes you need to separate the wheat from the chaff. Good luck...Kate

@lorifilipek ...We could use you here in FL with our Red Tide and Algae Crisis...sounds like interesting work. Thanks for your summary on the article. I asked my GP to prescribe the hypertonic 7% saline solution. It comes in premeasured little pippets. (I used to make my saline solution for my nettie pot but would not know how to get a 7% solution for nebulizing) The pippets are great to use for nebulizing...no mess, correct salinity, pre measured and my insurance covers most all of it. I cannot tell you what a difference the nebulizing has made for my breathing. It also makes you cough and bring up some of those mucous plugs. Somehow my breathing is a lot easier since starting the practice twice a day. Kate

@lorifilipek I get a script from my specialist for the saline, much easier. I think your info from the article was spot on. 🙂

Amakacin Inhaled is approved by the FDA yipeee https://www.ntminfo.org/news/2018/09/fda-approves-arikayce/

@ling123 Excellent post Ling. I especially like the last sentence. I think a lot of our slowing down is not all on the disease's part; but, also just part of the aging process. From what I have seen from some members, the more active you are, the better you feel. It also makes your lungs stronger.

@alleycatkate Hi Kate! I want to hear all about your Mayo visit with Dr. Leventhal!

@windwalker ...Hi Terri...It was a GREAT appointment with Dr L at Mayo!! He says he calls you Terresa...not Terri...and, of course, he knows you and your case (though he did not speak to it). The weight of the world has been lifted from my shoulders. I have both mild MAC and mild Bronchiectasis. I need to have antibiotics on hand for flares (not ones used for the big 3 treatment) preferably something like augmentin & continue with my 2x a day nebulizing and a yearly check-up. My biggest takeaway from the appointment was for me to handle my acid reflux. If any here are not aware, most on this site have acid reflux which can aspirate into the lungs. Even if you do not think you have it, there can be "silent reflux"...so check it out...a clue to it is a constant clearing of the throat or a feeling of a lump in your throat. Maybe see a gastroenterologist. He did not like my treatment (Slippery Elm tea after dinner) as the most important thing is absolutely no eating 3 hours before laying down (including daytime naps) and no drinking in that time period except maybe a half a cup of water. The other biggie is not to sit straight up in bed or propped up with pillows when you feel it as you put pressure on the diaphragm. You need to be at an angle... The two fixes are either a block 4-6 inches thick under the legs of the bed at the head or buy a wedge and place it under the mattress....and no mention of drugs (thank the Lord....he is one of the first Dr's to not push drugs!!) I loved him and everything about him... He told me with a smile to relax and that I will outlive my husband. Oh, on the brief mention of that article I posted with 7% saline killing MAC in an in-vitro situation...he says he knows of no studies done that prove this so the premise was sort of dismissed. Thank you, Terrie, for your thoughts on the wonderful healing and considerate Dr at the Mayo Clinic!!

@alleycatkate Kate, thanks for all the useful information, including about 7% saline and GERD! (This website is a godsend!)

@alleycatkate Kate, regarding GERD, I’ve tried 2 different types of wedges for sleeping and ended up rejecting both. The first was the standard 2-foot long wedge that made me bend at the waist instead of at the hips, which was very uncomfortable. The second was a full bed wedge. It was only 3 inches at the head to an eighth inch at the foot. However, even with the mild slant, both my husband and I ended up sliding down the bed in our sleep, with our feet scrunched up at the bottom of the bed in the morning.

Your reminding me not to sleep on my right side also resulted in an hilarious experiment this morning. I typically fall asleep most quickly when my husband cuddles me by spooning. I’ve been sleeping on the right side of the bed (if facing up to the ceiling) for the 40 years of our marriage, so when we spoon, I’m lying on my right side. This morning while we were cuddling (not spooning), I remembered your post and I suggested we try cuddling by switching place on the bed, so that when we ended up spooning, I'd by on my left side. We would have made a great comedy on “Candid Camera!” Our arms were all akimbo trying to do the mirror image of what we’d been doing for so long. I almost ended up on the floor laughing so hard. (I think I’ll first try staying on the right side of the bed, but not spooning to fall asleep. 🙂 )

Regarding the Red Tide and blue-green algae in Florida, I'm not at all hopeful. If current industrial farming practices continue and the problems of climate change continue to be ignored, I expect things will only get worse. 🙁