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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...."
That was very well said!
@macjane Jane that is horrible mistreatment! Never give up on finding GOOD healthcare.
@dmarks Hi Debbie. Was wondering how you are doing. How is the clofazamine working? Are you feeling any better? I hope so. -Terri
@windwalker,Terry--Thank you for all of the information!! This site has been so helpful. I have had Bronchiectasis since childhood. When I get a cough, it has always been horrible and I get sicker and sicker until I get on an antibiotic. It then clears up. I'm very active, have always been a runner and love being outdoors. Last summer I started to feel fatigued ALL the time. Not coughing not sick, just tired. Then one evening, I felt like I couldn't catch my breath. I suspected it has something to do with my lungs. Long story short, they did a CT scan and found nodules. Pulm. doc. gave me option of try to treat (not knowing what it was) with antibiotics, or do bronch. I opted for broch, and they found the MAC. I'm REALLY glad they found it right away. Had I not had a history of bronchiectasis, I think it would have taken forever for them to figure it out, because I wasn't coughing and didn't feel sick--just SO tired. I'm a little over 6 months on the BIG 3, and have only had a few bad days when the extreme fatigue came back. Just did a scan last week, do not have results yet, but will definitely complete the 18 month regime. I hope and pray all the time they will find another treatment, because the thought of reinfection terrorizes me. I do think exercise helps me a lot. Some days I have to really push myself to do it, but in the long run it seems to really help. Thanks again for all you do! You REALLY are an inspiration!!
@lisanova Hi there, I agree with you exercise is key! Like you I’ve always been active, was an athlete through college and coached & taught PE for years. I have started suffering with extreme fatigue, too. Gotta keep fighting!
@lisanova I am glad you’ve joined our chat site! You will find out that many of us had different experience. Today my doctor spoke to me about young children getting bronchiectasis who can live with it without any effect of MAC. All of a sudden they do a bronco
and find you have a MAC.They happen to do a bronchoscopy and found it. I do not understand why they gave you the big 3 just because you were tired. Was there a lot of infections in your lungs. I have never taken the big 3 and when i had some coughing or
felt more tired when exercising I was taking Clear Lungs to clear my lungs and I would be ok! Windwalker is a better expert with antibiotic than me for sure. If you are on antibiotic you may want to consider taking High dosage of Probiotic to keep your defence
system with good bacteria because the antibiotic will destroy the good one also. Better be safe then sorry! Nick!
@alleycatkate & everyone! KATE as per our phone conversation here is the results! Yesterday was a very good day with good news! My pulmonary doctor gave me my result of the CTScan. My scan show a very stable and show nothing abnormal to a bronchiectasis lung.
Very glad ! To me it means whatever I do is working for now. The doctor explain that the micro nodules on the lungs is the dilatation of the tree buds and when it is infected the nodules are bigger on the scan. It is not showing any of it! He says that
he will recommend a CTScan in 2 years (yeah less radiation) but if I feel things aren’t going find to give a call to his secretary and he will take care of it right away . He gave me a prescription of Avelox (antibiotic) in case I start a cold or beginning
of congestion due to a cold I must take it for 7 days to prevent it. He has always done that because of my bronchiectasis is more prone to pneumonia. I have the best pulmonary doctor I could ask for. Thanks to him if I am doing so well because he has followed
me since 2009. He is cute lol and a sweetheart! He always take the time to talk and answer all my questions. I know one thing I LOVE THOSE DOCTOR OHIRRA’s PROFESSIONAL PROBIOTICS AND MY MILK THISTLE TO KEEP MY STOMACH Acid free! I THING IT IS A GOOD PREVENTION,
Have a nice day everyone! My divine energy is with you all! Nicole
@src3acs Hi there. I was just reading through some posts and came across tjis older one of yours. I am sorry I didn't get back to your question of who to see on the D.C. area. Was traveling that day and had a dental emergency. NIH and John Hopkins are two notable healthcare institutions. You have probably already found a doctor by now. How are things going for you now?
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Eight years ago my doctor and I agreed I would not do the antibiotics because I was not sick at all even though I had been diagnoised with Mac and Bronchiectasis. I had five good years of living my life, traveling etc. Since, I do feel sick; tired, short of breath, unable to make plans and follow through because I'm having a bad day. I do not regret my decision. I treasure those years of still feeling healthy. I am not on any antibiotics now as I was losing hearing as a result of them. My life is a daily challenge but I've got a routine that works for me. You will find that some people take the meds and come out doing fine and that others are miserable. There is no one answer and ultimately, the decision is yours. I have not had one doctor making it for me, and that's after seeing quite a few. I think age can be factored into the decision. Good luck.