Connect
← Return to Extreme fatigue with MAC
Discussion
Comment receiving replies
@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...."
I live in the Fredericksburg area of VA. Not far at all from N. VA. I was born and raised in Maryland. I have only been in VA for 4 years.
Terri....your very honest post made me tear up. It's so hard when you have energy and strength one day and the next day you are exhausted for no apparent reason. Again....fatigue and occasional shortness of breath are my only symptoms. I made an appointment to follow up with my pulmonologist since my fatigue is getting worse. I will see him on March 12th. My husband and I talk about my fatigue and he is very understanding....but I have been hiding it from the rest of my family and from work. Not sure how much longer I can continue to hide it.
Terri: I was truly amazed by the support I just started to receive from this wonderful group of people, I notice you are now in Fredericksburg which is next to King George. My husband's family is in that area. I find I get more tired fighting the weather which I find oppressive. Does the weather affect you especially in the spring and summer?
macjane....hello. I live in Fredericksburg VA. I do find the summer can be a little tough if the humidity is high. I also find I get out of breath when the weather is extremely cold. We've had a pretty mild winter here. Do you live close by?
I agree with you about the support on this site. In the short time (2 days) I've been on here I am learning so much. Wish I would have found this one sooner.
@ling123, Thank you Ling; that means a lot to me.
@macjane, Hello Jane. The weather always tormented my lungs, especially when I lived in Va. Whenever the barometric pressure would drop, so did my lung function. The air would get heavy and thick. I found it difficult to breathe in extreme humid air. Also, cold dampness of winter would bring on bronchietis, and cold air would cause my lungs to seize. I have moved to a coastal area in southern S.C. This move has been a great improvement to my health.
Last yr in March, I took Azithromycin 500 mg 3x’s a week @ noon, RifAMpin 300mg 3x’s a week in morning and Ethambutol 1200mg at night. I was very allergic to Azithro and medicine stopped. Started over with same med and ended up in ER with cluster headache and very high blood pressure. These meds did not help me.
@macjane , Are you on any antibiotics now?
No but on other meds given to me. The MAC was never discovered until 1 year ago after one misdiagnosis after another. I was told that I was a "liar" and that I had clearly was a heavy smoker. When two physicians tried to step in to speak with my PCP about the records and gross errors, he refused to even look at these. My medical records turned up "missing" when I changed to the University of Michigan. A request for records had been hand-delivered to my PCP's office months before.
Connect
@windwalker Terri, don't be too harsh on yourself. No matter how hard we try to be strong and independent, we all have times when we need help of some kind, actually any kind. to make us feel better. You have been through a lot. But you are still standing. I can tell that you are a fighter. Despite your own illness, you are still here trying to help others. I'm very proud of you.