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← Return to Extreme fatigue with MAC
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@src3acs, As far as treatment goes, different doctors have different ideas about how to treat mac/bronchiectasis. That is what makes it so frustrating for us patients. One thing for sure is, you must arm yourself with as much information as you can about it. That way you know what questions to ask and also things you can do to help your situation. I have been on this site since 2016. I have seen one person come back on here and say that she has gone through the Big 3 antibiotic regimen and is mac free and has been for years. We can speculate that others got better also and just left the site. I have asked that those who are concluding their treatment to please check back and let us know how they are doing. They can be the beacon of hope to others. @irene5, had once said that she wishes she had gotten the Big 3 antibiotics sooner because of lung deterioration. (that was you wasn't it Irene?) I cannot say for sure that my delay in a regimented treatment didn't cause my lungs to get to the point where they are at now, which is very low lung function. Please do not panic or get depressed because of your diagnosis. Everyone's experience with this is different. For example: look at @ling123, she is proof that we can have this disease at varying levels. For some it is a minor impairment, for others it can be deadly, and most of us are somewhere in the middle. There is a lot of good information on this site about dealing with this disease, how you get it, how you prevent re-infection, etc. Medical sites like Mayo Clinic, John Hopkins, and National Jewish Health are also good sources. It is important that you do the work to learn all that you can about. We are here for you!
Replies to "@src3acs, As far as treatment goes, different doctors have different ideas about how to treat mac/bronchiectasis...."
@ling123, True that, Ling! That is why it is important to do your saline inhalation twice a day! It is just good lung hygien!
@dmarks, I hate to say this, but the only surgeries I hear of ONLY come from Denver and Dr. Mitchell. I am seeing a pattern. Not only am I suspect, but the condition seems to come back on all patients who undergo this surgery.
@src3acs, NIH is up there near you. They are quite reputable and cutting edge.
@src3acs, Please, others who have completed the BIG 3 antibiotic treatment weigh in on this. I have not taken these antibiotics; so, I don't know If things improve or not, energy-wise. So far as I can see, those of us with negative sputem tests, never did regain the energy we once had. I have a few days where I might have a day of feeling normal and energetic. Mostly, I have to take stimulants to get me going. That is not ideal, but I begged my doctor for them. I told him that I felt my life wasn't worth living if I couldn't get off of the couch. This is not my proudest post, but it is my most honest.
@colleenyoung , please read this.
@windwalker Terri, I totally agree. I was not very active before taking up tennis in 2002. I do believe the frequent challenge to my lung capacity has really helped me dealing with bronchiectasis and MAC. Besides tennis, my husband and I travel to Wyoming every fall to hike the canyons in the Grand Teton National Park for the past 7 years. We have gone as high as 9,000+ feet above sea level. I do have trouble with the altitude and need a couple days to acclimate. But I'm glad I'm still able to do long hikes. I'm turning 65 in a couple of weeks There are women in my area who are in their 70s and 80s and are still playing tennis 2-4 times a week. So I think I can do the same. That is very encouraging to me. I hope I can keep going for as long as my body lets me. I'm not worried about my lungs as much as my knees. They are the ones that need to be babied.
Dear Terri @windwalker. I thank you for your honesty! This forum is a place to talk frankly and to be able to so without fear of being judged. We learn coping skills from each other, get information and support. But sometimes it just helps to say, "this sucks!" I invite you to lean on fellow members of the MAC group while we offer a virtual embrace.
@windwalker so sorry to hear that. your honesty will help others, thank you. @src3acs I have been and still are on the big 3, I definitly have more energy than before I took them, but some days the meds make me tired, that and menopause.
I have not completed the Big 3 yet, and my energy has not returned. But I am considered “elderly” now at 68. So maybe fatigue is expected. There is no shame in needing stimulants. The ID doctor insisted I use marijuana for my lack of appetite. I have my card but still haven’t used any! I’m sure I’ll get to it. I always taught my children whether at school or at home - need and want are two different things, just like fair is not equal - fair is everyone gets what they need!
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@ling123, I feel like you are doing as well as you are due to the fact that you have played tennis for years. Your lungs have got to be very conditioned. That may have been your saving grace.