Extreme fatigue with MAC

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.

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.

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?

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????

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

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

@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.

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.

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

@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