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!

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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@prelle1

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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Hi Ellen. You have been through quite a lot. I am sorry for that for you. Like you I thought perhaps MAC found me on one of my six trips to China to complete adoptions, especially since we all enjoy the same recycled air on those long flights. (For you a cruise). I really don’t think mine came from those trips, and I think we could drive ourselves crazy trying to figure that piece out. So don’t beat yourself up about taking a cruise. MAC was my retirement “gift.” I think we are all somehow susceptible to it based on a compromised immune system. Wishing you patience. Go easy on yourself. Good luck with your decision about the Big 3. My body doesn’t like them very much so I have been on a different regimen after three Big 3 attempts. This doesn’t cure but “seems” to keep the MAC from progressing so quickly in my lungs. Take care. Irene5

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@windwalker

@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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@jkiemen Hi Jo Ann. I just read an interesting article about how to get around that life insurance rejection. You can have another family member or relative who is healthy buy the policy. They then can put it into a 'Trust' for you that names your beneficiaries. You can make the payments to your relative or family member that purchased the policy. A good Estate lawyer can help you with that. I am leaving my daughter a stock portfplio and real estate. Both are set up in a Living Will and Trust. So, that is another way to leave something to your beneficiaries if you can afford to. If you can buy a rental property, that is a good way to go while interest rates are low.

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Can you tell me if MAC is referred to as sarcoidosis. My records appear to be missing diagnosis from chart when I reacted to medicines. I was trying to get history from records in local records. Another doctor has MAC but can't find treatments (2) that ended up being stopped. I don't see MAC even after specific pulmonary test. I could be looking this up wrong.

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@macjane

Can you tell me if MAC is referred to as sarcoidosis. My records appear to be missing diagnosis from chart when I reacted to medicines. I was trying to get history from records in local records. Another doctor has MAC but can't find treatments (2) that ended up being stopped. I don't see MAC even after specific pulmonary test. I could be looking this up wrong.

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I forgot to say thanks. I will be seeing someone next month in Rochester – long ride but sounds like Mayo is way to go and grateful to all of you people and the support group. Jane Brown

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@macjane

Can you tell me if MAC is referred to as sarcoidosis. My records appear to be missing diagnosis from chart when I reacted to medicines. I was trying to get history from records in local records. Another doctor has MAC but can't find treatments (2) that ended up being stopped. I don't see MAC even after specific pulmonary test. I could be looking this up wrong.

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@macjane : MAC and sarcoid are two separate things although a person could have both. MAC is an OI (bacterial opportunistic infection) whereas sarcoid is an autoimmune disease. I only know know this because I have MAC, and my husband has stage 4 sarcoidosis. Irene5

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Irene, I have no idea of what stage of sarcoidosis I have. Has this affected him physically and emotionally? Thanks, Jane

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@macjane

Irene, I have no idea of what stage of sarcoidosis I have. Has this affected him physically and emotionally? Thanks, Jane

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Yes, hugely! Had we known then what we know now, I would have had him apply for disability. He retired in 2006 at age 60 because he could barely work three days a week. (Guidance counselor) We didn’t know there were stages to sarcoid either. It has affected everything for us. And I have MAC. Tis a lovely retirement- not! The odd thing is that our neighbor got sarcoid too and it affected different organ systems for him. He looked like he had AIDs. He (our neighbor) did receive psychological help with it. He was only in his forties. My husband’s quality of life is poor to say the least. It is sad. He says a lot more “wordy dirds” now because he is so frustrated. Breathing, coughing, eating, – all are difficult! And then he feels bad because he can’t help me. No fun going on- but every day above ground is still ok by me!

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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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Hi ain’t nanny, I think we all feel fatigue and exhausted with Mac. And sleeping is always difficult for me too. But have you tried melatonin? It works for me most of the nights and then again sometimes it does not. But it’s pretty safe. I would wake up every morning at 4:am or 5:am and that’s it. I am 63 and my mind feels like 40 but my body feels like 80. So hang in there it will get better. Rita

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I was so tired that I couldn’t walk across the room in 2008. Went on the 3 meds and seemed wonderful . Now the fatigue is back and I think I am going to try the meds again. I just don’t want to live with this quality of life. But then again I do want to live!!

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Hi, I'm new too and getting going with the learning curve. Yes fatigue certainly is a symptom more so when other medical issues are present. Ive found that building up on exercise and moving around helps. If you are positively diagnosed I would go on it in a jiff to try to nip it in the bud if you can. Take care.

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@jweisser

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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@jweisser Hi Janice. Have you had a recent CT Scan of your lungs? If not, ask for it to be done at your upcoming appointment. That is the best way to get a true picture of the health of your lungs. A good pulmonoogist office should have a saline nebulizing station to help you bring up sputem for testing. Mac and bronchiectasis disease is very fickle. For some people, it can progress, & be a very serious, even life-threatening disease. But, the majority of people will have it mildly and experience 'flare-ups' (bouts of lung infection). This is a disease that you will have to keep an eye on. Please read through our past posts and visit the Discussion Board on the group's home page. There is SO much info in our conversations. Are you able to navigate this site alright?

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@macjane

Can you tell me if MAC is referred to as sarcoidosis. My records appear to be missing diagnosis from chart when I reacted to medicines. I was trying to get history from records in local records. Another doctor has MAC but can't find treatments (2) that ended up being stopped. I don't see MAC even after specific pulmonary test. I could be looking this up wrong.

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@macjane Hello Jane. No, MAC and sarcoidosis is not the same thing. Mac is an infection caused by a mycobacterium (bacteria). Sarcoidosis, is thought to be an autoimmune disease that causes granular tumors anywhere in the body; typically in organs and lymph nodes. You mentioned NOTseeing mac indicated after your pulmonary test. That is because pulmonary tests test your lung function, not what is causing your issues. It sounds like you need to take more serious charge of your medical care. You may not even have mac, but only sarcoidosis. Ask for hard copies of all of your medical records for your own personal files. Do you know if your physician's practice offers a 'patient portal' where you can get online and read your medical records?

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