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desperada (@desperada)

Untreated MAC

MAC & Bronchiectasis | Last Active: Aug 24, 2018 | Replies (85)

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@oldkarl All bronchiectasis cases are chronic and incurable. But I have trouble understanding how bronchiectasis and amyloidosis are related. I've had bronchiectasis for many years. But I know I don't have amyloidosis of any form. Besides, Gelsolin amyloidosis is mostly inherited and bronchiectasis is not.

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Replies to "@oldkarl All bronchiectasis cases are chronic and incurable. But I have trouble understanding how bronchiectasis and..."

@ling123 Hi Ling. Correction, bronchiectasis can be inherited. According to my Mayo doc; mine is ideopathic which means unknown origin or inherited. Dr said mine was genetic form. But, who really knows….

Hmm…. didn't know that, @windwalker Terri. Anyone in your family has/had bronchiectasis? I know mine was caused by being exposed to TB bacteria. Although I did not get TB, my lungs were permanently scarred. So far, none of my readings on bronchiectasis has suggested that it could be inherited. However, all the websites I have gone to have suggested that bronchiectasis is caused by damage to the airways, which is in turn caused by various health issues, some of which can indeed be inherited, such as cystic fibrosis, Crohn's disease, etc. Here is one of the web sites that I have looked at in the past. It says more or less the same about bronchiectasis as other places that I have found: https://www.nhlbi.nih.gov/health-topics/bronchiectasis

@ling123 I have not been diagnosed with MAC, but probably should have. I have, however, been diagnosed with chronic bronchiectasis, and with potful of lung disease which seems now to me to be the support of MAC. Depending on which Internet literature you read, both are either obligate-positive or otherwise related to some form of Amyloidosis, such as Crohns, Gelsolin, Apolipoprotein, Cystatin-C, AL, etc. These are mostly inherited, but some are secondary to something from outside such as Radon or Roundup to trigger their work.. What happens is that Amyloid dies after 2-4 hours, and after cloning itself a couple of times. It then forms little water-filled tubes called fibrils when the misfolded protein (Amyloid) dies, and deposits in various tissues around the body. Then these deposits attract foreign matter such as bacteria, or even useful stuff such as more water, and this interrupts your body function, lungs, brain, or whatever. As you say, NIH and Mayo have great material. The best I know of is Dr. Martha Grogan's video on Diagnosing Amyloidosis.

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