Extreme fatigue with MAC

Posted by src3acs @src3acs, Feb 26, 2018

Good Morning, I am new here so this may have been discussed before. I was diagnosed with MAC in 2012 after I was diagnosed with breast cancer. I had a biopsy and lung wedge resection…both confirmed the MAC. In 2015 I had a bronchoscope done which again confirmed the MAC and bronchiectasis. I have seen a Pulmonologist, infectious disease and my primary care doctor. Everyone seems up in the air whether to treat or not. They seem to be leaving the decision up to me. I don’t have a cough, I do have some shortness of breath occasionally but I am always tired. No matter how much I rest or sleep…..I am tired and sometimes exhausted after minor activity. Is fatigue a main symptom of the disease. Would treatment help my fatigue or make is worse. Thank you!

@prelle1 Where do you live? Are you restricted by any insurance to where you can be seen?

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@prelle1

I too had breast ca then developed MAC. I was put on the 3 Antibiotics in 2009. Did not receive any follow up or advice at MD Anderson where I was treated and decided myself to go off the meds after 9 months. Now in 2018 , my cough is back and the fatigue is extreme . I have basically had no treatment but for the icassiinalt Zithromax my GP was providing . I am basically a. Invalid now not really going out. I need some treatment and MD Andrrson won’t really treat. I am so glad to get to this site and all of you because I did not know anyone who had the disease except a guy who had part of his lung cut out. Where should I go for treatment ? Which is the best clinic and the best doctors. I was really ready to give up until I heard all of your voices! Thank you did much ! I had just felt so alone in this and the doctors I saw just didn’t want to get involved in this disease.

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@prelle1 Hi there. Welcome our group. Do you have a first name? Gosh, it sounds like you are having a rough time right now. How disheartening it is to not be able to get the proper care that you need. Now, more than ever, you will need to advocate for yourself. Mac infection is supposedly a rare thing and many doctors do not know how to properly treat it. First and foremost, we need to find you good medical care. May I ask what state you live in, & what town or city you live on? I can help you to locate a knowledgeable physician. Please do not get discouraged, help is out there; we just need to connect to the right dr.

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@jkiemen

@windwalker I am starting month 9 of the Big 3. Some days I feel good, some days tired. I am upset that I was declined for Life Insurance.

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@jkiemen, I hear you about the decline in life insurance. I was declined health insurance for many yrs until I got on Disability. Aggrevating!

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I was also diagnosed with MAC after Breadt Ca. In 2009. I was so sick that t had no choice but to go on the big 3 meds. It really helped me. I only stayed in for 9 months and wish I had done a year at least. I was able to get my life back and resume normal activities . After my breast ca treatment in 2009 I had gone to China and thinker now that is where I must have picked it up???
Now in 2018 I returned to China on a cruise. My MAC is back . This was a very bad decision for me . I had been getting progressively more tired now I can’t even do anything . I may be ready to start a course of the big 3 again .

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@windwalker

@prelle1 Hi there. Welcome our group. Do you have a first name? Gosh, it sounds like you are having a rough time right now. How disheartening it is to not be able to get the proper care that you need. Now, more than ever, you will need to advocate for yourself. Mac infection is supposedly a rare thing and many doctors do not know how to properly treat it. First and foremost, we need to find you good medical care. May I ask what state you live in, & what town or city you live on? I can help you to locate a knowledgeable physician. Please do not get discouraged, help is out there; we just need to connect to the right dr.

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Thx so much I have not been treated for 9 years and have been going it alone. Now because of my”invalid status” I need to do something . As I said I went in the3 meds 9 years ago I had pneumonia 3 x and couldn’t walk across the room . I had to help the doc with writing the script and he never even followed me up on the meds or told me about Any Eye problems etc. I went it alone . I was so sick so fast and recovering from ca that I just didn’t have time to think the med regime might be more difficult than what I was facing. I had no follow up. Now I am tired all the time my symptoms came back after I stupid cruise to china. I was seen at MDanderson and treated there. I have an appointment with infectious disease in a week . Thank you so much , my name is Ellen

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@windwalker

@prelle1 Hi there. Welcome our group. Do you have a first name? Gosh, it sounds like you are having a rough time right now. How disheartening it is to not be able to get the proper care that you need. Now, more than ever, you will need to advocate for yourself. Mac infection is supposedly a rare thing and many doctors do not know how to properly treat it. First and foremost, we need to find you good medical care. May I ask what state you live in, & what town or city you live on? I can help you to locate a knowledgeable physician. Please do not get discouraged, help is out there; we just need to connect to the right dr.

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Ellen houston tx

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@jkiemen

@prelle1 Where do you live? Are you restricted by any insurance to where you can be seen?

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Houston , no I have insurance and means

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@windwalker

@prelle1 Hi there. Welcome our group. Do you have a first name? Gosh, it sounds like you are having a rough time right now. How disheartening it is to not be able to get the proper care that you need. Now, more than ever, you will need to advocate for yourself. Mac infection is supposedly a rare thing and many doctors do not know how to properly treat it. First and foremost, we need to find you good medical care. May I ask what state you live in, & what town or city you live on? I can help you to locate a knowledgeable physician. Please do not get discouraged, help is out there; we just need to connect to the right dr.

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I am so brain fogged that I didn’t remembering posting one of my responses. Can you name a doc , I will go anywhere . It it best to go to Mayo in Fla or Az for this and who is the better treaters. I just feel so powerless.

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@ling123

@src3acs I suppose just because I don't have the problem with shortness of breath, it doesn't mean other people who have been diagnosed with MAC don't share your experience. Let's hope others in this group can provide more information on that front. When I was first diagnosed with MAC, I was also given the option of going on the drug treatment or not. After considering the pros and cons of the drug effects on the infection as well as on my body (other organs), I decided to wait and see. My pulmonologist agreed with me. Since the initial diagnosis, I have had chest X-rays and a CT scan. The results point to improvement. As a result my doctor thinks we should continue the wait-and-see path. There are so many people in this group who have the same diagnosis as you and me. Let's hope that there are others who also share your symptoms and are able to provide you with more reassuring answers to your questions.

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I have had bronchiectasis for 18 years and am at this point short of breath and have fatigue, but these things did not show up until about 3 years ago. I have had a cough right along, but on the whole did not suffer much until recently. So you may have many years before you develop these symptoms Who knows, by then there may be a cure ! I can still do 10 minutes 3 x a week on the treadmill (1.8 m/h) and 10 min. on the NuStep, which my pulmonogists strongly recommend.

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pkayh ….. thank you for an encouraging email from someone who has known they have it for 18 years. Would it be too personal if I asked how old you are? I'm almost 78 and wondering if you are a young lady?

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src3acs I'm very curious about the fatigue with this disease. I'm close to 78 and I don't know whether to blame fatigue on the disease or old age (or maybe both???) But….. regardless, it's there. I continue to do the best I can but I also continue to feel exhausted much of the time. To make it worse, I cannot sleep — so I get up as tired as I go to bed. I don't sleep in the daytime and really not more than 5-6 hours at night and even that is broken up into about 2-hour segments. Anyone know what to recommend for a night's rest????

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@auntnanny

src3acs I'm very curious about the fatigue with this disease. I'm close to 78 and I don't know whether to blame fatigue on the disease or old age (or maybe both???) But….. regardless, it's there. I continue to do the best I can but I also continue to feel exhausted much of the time. To make it worse, I cannot sleep — so I get up as tired as I go to bed. I don't sleep in the daytime and really not more than 5-6 hours at night and even that is broken up into about 2-hour segments. Anyone know what to recommend for a night's rest????

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I'm also 78 years old and just recently diagnosed with bronchiectasis. I saw the pulmonologist this week, he showed me my lung scans and said there are not very many areas. I don't know how much is enough to cause problems. My main problem is fatigue and shortness of breath. He has me taking a short regiment of Prednisone and an antibiotic for 10 days. I'm supposed to take three different sputum samples but I can't get anything coughed up. I can feel it's in my lungs and I wheeze but nothing will cough up. Does this disease progress or will it stop with the few that I have now? I also the breast cancer, chemo and radiation in 2013. I don't know whether to declare myself not serious or keep ahead of this. I see the pulmonologist again it two weeks, I was so overwhelmed with questions from the doctor that I forgot to ask if it progresses . He has also ordered a heart valve echo cardiogram but that won't happen until the end of December. Janice

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