Untreated MAC

Posted by desperada @desperada, Aug 16, 2018

I have just been diagnosed with MAC and Bronchiectasis. I am already mostly deaf in one ear with RAGING tinnitus, I am plagued daily with horrific headaches, I have fibromyalgia, stenosis in the neck and spine and have vision problems. I also have anxiety disorder. I have had C-Diff four times from antibiotics, so my gut is pretty much ruined. EVERY SINGLE DAY is rife with suffering. I am not going to add suffering from these antibiotics that will be exacerbating every single affliction I have to the point of being totally intolerable. Taking these antibiotics scares me to death! The only thing that has stopped my trembling is the decision just to opt not take them. and believe me, the Pulmonologist just gave me brutal hell over MY decision. He was just mean, and I was crying more over his attitude, than having the actual sickness.
My husband just passed away in November, and we had no children. I haven't even finished dealing with his death, I'm still in bereavement therapy, and now i find myself having to plan for mine!
I am not willing to suffer the side effects of these totally toxic antibiotics. I have had a pretty good life. I am 71. No one lives forever.
I am really at peace and content to just enjoy the days I have, and I feel relieved I can just plan to get myself into Assisted Living and let things run their course.
I am totally fed up with the horrible care and berating I'm getting from my doctors with the exception of my PCP. I live in an area where the health care is not that great, and everyone just kind of gets by.
I am using CBD edibles and they actually suppress my coughing and keep me relaxed without being impaired.
My disease right now is not that debilitating, but I know that will be changing.
The thing I am finding out is that there is absolutely no predictability. No one knows how the disease progresses – each person is different. Not everyone "tolerates" the antibiotics, and not everyone has a positive outcome with them.
I have two little dogs – I walk them EVERY day – no matter how I feel. And it takes "activity" just taking care of myself on a daily basis.
I have never been a martyr. This is not a fight I want to participate in.
My support is practically nothing – I have to do the best I can completely on my own.
There are so many, many brave, driven people sharing their experiences here and I take huge comfort knowing this disease is not just mine and I am not being victimized or punished nor the only one going through this.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@desperada Hi, Desperada, I, too, have been diagnosed with Bronchiectasis, Chronic. NIH and Mayo (Morie Gertz) says that CB is almost an obligate sign for some forms of Amyloidosis, and probably also for Evans Syndrome. Mine is a Lite Chain form of Amyloidosis, Gelsolin, which does not usually show itself until around age 70-80. It is uncurable at this point, but miracle meds are coming out every week or so, such as patisiran, etc. City of Hope is usually a very good diagnostic clinic for this stuff. Anyway, I have been diagnosed with lots of stuff, including CB and MAC through the years. I also have a handful of cancers, so my prognosis is not good. But ask your hematologist to run a Bindings Site SERUM FreeLiteChain misfolded protein assessment for a clue. Anything over 2.00 mG/deciliter will give a strong clue, even obligate. Medicare, if you are covered, pays for that test.

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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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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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@alleycatkate, You rock girlfriend for finding and posting that list!

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@jkiemen

@tdrell I live near Milwaukee too and work in Milwaukee one day a week and other days in Lake Geneva. Can you tell me who your Pulmonologist is that yelled at you. I got yelled at when I went for a second opinion.. Just wondering if it is the same doc. There are 3 of us in the Milwaukee area now (that I know of)

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@jkiemen….the Pulmonologist who yelled at me for having the sleep study at NJH is a Dr ALi…..part of the Aurora system .Aside from that horrendous reaction, I found him thorough and up to date….even called to tell me that MAC was found on the bronchoscopy he had done. Tdrell

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@ling123

@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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@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….

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@ling123

@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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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

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@ling123

@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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@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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@oldkarl Thanks for the explanation. I understand that the diseases that you have listed can all possibly lead to bronchiectasis. Mine was caused by exposure to TB bacteria in childhood. Although I did not get TB, the bacteria ended up scarring my lungs and damaged my airways, leading to bronchiectasis.

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@tdrell Mine yelled at me related to the second opinion. He told me he was the area expert and if he got to a point that he felt was warranted, he would send me to National Jewish.

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@jkiemen

@tdrell Mine yelled at me related to the second opinion. He told me he was the area expert and if he got to a point that he felt was warranted, he would send me to National Jewish.

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@jkiemen Please get away from that P(*^ as fast as you can. His work is not to be trusted, and your life is in danger, I believe.

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