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.

@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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@oldkarl I did get the second opinion and the treatment was the same.

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@ling123

@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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@ling123 Actually, all the diseases I mentioned are part of the Amyloidosis Light Chain system. There are nearly 2,000 known variations on that theme. And bronchiectasis is just one of many results of the disease. I, too, have occasionally been diagnosed with TB, but it has never shown itself properly.

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@jkiemen

@oldkarl I did get the second opinion and the treatment was the same.

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@jkiemen That is sad, but it happens a lot, especially in larger but lower clinics.

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@ling123

@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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@oldkarl No, I have never had TB. Just being exposed to the TB bacteria. When I was diagnosed with MAC a few years back, they thought I might have TB. So they tested for both TB and MAC. Sputum samples came back positive for MAC, negative for TB.

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@oldkarl not sure what you mean by larger but lower clinics?

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