Bronchiectasis: New Diagnosis

Irene, Your message bears repeating occasionally; I'm glad you just did. Don

Thank you - I knew there wasn’t a cure but thought there might be something to put it into remission. I have been doing the albuterol in my nebulizer and will ask about the sodium. I’m on Azithromycin 3 days a week. I’m also doing the clear lung capsules. Seems to help me cough if there’s something to cough up.

Hey kpost, I'll begin by making full disclosure: I'm have a galloping bias about the place of diet: after reading T.Colin Campbell's magnum opus The China Study in 2008 and after flirting with vegetarianism off and on since teenage, Campbell's book resulted in me forthwith becoming committed to a low-fat, whole-food, exclusively plant-based way of eating. Since then I've not knowingly eaten animal flesh or animal lactation products. Also, I use no cooking oils in my food prep. You can get all the fat you need from high fat foods like avoacados, olives, soy milk and so on.
You're on the right track ditching the dairy. I agree fully with your mother's position regarding medicines, though I part ways with her regarding supplements. Take Hippocrates lead and let your food be your medicine. Eat real food; pass the supplements. Our bodies have no more need for cow's milk than we do for giraffe, eland, tiger, or hippopotamus milk. Indeed humans are the only species to continue eating milk beyond weaning (and on top of that, the milk from another species).

Animal based foods place added burden on the human body since we're not well adapted by our evolutionary history to consume them in the abundance the average person does now. MAC AND BRONC place enough burden on our bodies, why up the ante by eating dead flesh? Don

@thumperguyYes, that is so true. A plant based diet is absolutely the way to go. When I was in college in the sixties there was a song by Melanie with the words, “ I don’t want nothin’ dead in me.” I became a lacto vegetarian at that time. I wish I had given up dairy, but I never did. Unfortunately, I spent the next several decades hanging over the sink eating off of peoples’s plates due to teaching and raising ten children. (Their plates - my husband always finished his:)) Good nutrition is key for us in this battle with MAC and Bronchiectasis. Had I known then what I know now I would have done things differently. I wish I had a remote and could press the rewind button on that one. We should all eat what is good for us and sugar shouldn’t be anywhere on that menu. Down the road I am thinking plant based might be the most appropriate diet for the planet and the human race. I do so love a Fribble from Friendly’s:). Irene5

As they say we are what we eat. I stopped eating meat, dairy,sugar and bread. I was only eating fruit and veg's I was determind to beat this. I lost 30 lbs. I stll have mac. I do the saline at 7% and I feel pretty good,touch wood. A freind wrote a book and it says our body can repair it's self if we give it the proper food. Since they pasturized milk they have made it hard to digest. Flour has so many chemicals now and has been genitically changed.Sugar is the worst. Meat we use abit of it but we cook it and our body has to get rid of all the waste. We just live with mac and do our best to survive eating properly really does help. garry

@garry Yes, that is so true. As a child we ate a small amount of raw meat with an onion slice and a bit of oil used in a Syrian dish my dad made. We ate tons of fresh fruit, but my dad had sprayed the trees and bushes with DDT!! I shudder when I think of that now. Everyone in my family has passed due to cancer. I am trying to beat those odds. The MAC meds are not pleasant, but I am persevering- fingers crossed and lots of prayer. (irene5)

Garry you said, "I still say chest xrays do not show mac." How about a CT scan? Pulmo ordered one for me a year or so ago. Read it along with the radiologist. The report to me was that my Mac had "improved."

@thumperguy Here is the explanation from my ID doc about the CT findings - the CT shows signs of the infection in the form of lesions, cavities and other damage. It also shows the extent and severity of the underlying bronchiectasis. The culture confirms the presence of a specific organism such as MAC, and can be further tested to see which drugs it is susceptible to. The repeat CT is used to determine if the signs of infection are improving, and may be used in conjunction with repeat sputum culture.
In my case, the lung CT clearly showed improvement, with the cavities and clouded areas gone. My cough was better, and my sputum clear so even though there is still MAC in my culture, the doc decided 18 months was enough of an antibiotic assault on my body.
So now I am in wait and watch mode, nebbing 7% saline in hopes of keeping the remaining MAC from growing. The CT will likely be repeated after a year of if my symptoms return.

Wishing you all the best, it's so good to read positive results for a patient of this disease. Blessings to you!

NavyLady, I recognize your problem, but I cannot do much about it but give some simple advice. First, make absolutely certain your medicfolks can read, at least on a 3rd grad level. Mayo-AZ sent one of my samples to Mayo-MN to have it tested for Amyloidosis. My blood kin have been diagnosed with MM, Carnetine, Lupus, Crohn's, etc.. Mayo-MN tested the samples for TTR, and found there was no evidence of TTR. That report was distributed across the country. However, about 20 clinics, labs, hospitals, etc, read and made decisions that Mayo had confirmed I had no Amyloidosis. The report only said I had no TTR, which means we could rule out about half the Amy types. Mayo-MN even said "We could not rule out other Light Chain Amyloidosis types such as multiple myeloma, Lupus, etc." Afterward, Willamette Samaritan, OHSU, SCCCA, Stanford, and even Mayo-AZ reportedly sent out reports that I had been cleared of Amy by Mayo-MN. Therefore, I must be psychosociophysiodystrophic, or, in more common language, nuts. So the first bit of info one should get from a lab or clinic, even at the Mayo rank, is the actual reading capability level of the staff.