1. < MAC & Bronchiectasis

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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 28, 2018
In reply to @windwalker "@src3acs, As far as treatment goes, different doctors have different ideas about how to treat mac/bronchiectasis...." + (show)
@windwalker

@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!

Jump to this post

@jkiemenHi Jo Ann. I keep wondering the same thing. Would testosterone help us? BTW, how are you doing? Are you feeling any better mentally?

REPLY
Jo Ann K | @jkiemen | Jul 31, 2018

@windwalker I am starting month 9 of the Big 3. Some days I feel good, some days tired. I am upset that I was declined for Life Insurance.

REPLY
1 reply
prelle1 | @prelle1 | Nov 26, 2018

I too had breast ca then developed MAC. I was put on the 3 Antibiotics in 2009. Did not receive any follow up or advice at MD Anderson where I was treated and decided myself to go off the meds after 9 months. Now in 2018 , my cough is back and the fatigue is extreme . I have basically had no treatment but for the icassiinalt Zithromax my GP was providing . I am basically a. Invalid now not really going out. I need some treatment and MD Andrrson won’t really treat. I am so glad to get to this site and all of you because I did not know anyone who had the disease except a guy who had part of his lung cut out. Where should I go for treatment ? Which is the best clinic and the best doctors. I was really ready to give up until I heard all of your voices! Thank you did much ! I had just felt so alone in this and the doctors I saw just didn’t want to get involved in this disease.

REPLY
1 reply
Jo Ann K | @jkiemen | Nov 26, 2018

@prelle1 Where do you live? Are you restricted by any insurance to where you can be seen?

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 26, 2018
In reply to @prelle1 "I too had breast ca then developed MAC. I was put on the 3 Antibiotics in..." + (show)
@prelle1

I too had breast ca then developed MAC. I was put on the 3 Antibiotics in 2009. Did not receive any follow up or advice at MD Anderson where I was treated and decided myself to go off the meds after 9 months. Now in 2018 , my cough is back and the fatigue is extreme . I have basically had no treatment but for the icassiinalt Zithromax my GP was providing . I am basically a. Invalid now not really going out. I need some treatment and MD Andrrson won’t really treat. I am so glad to get to this site and all of you because I did not know anyone who had the disease except a guy who had part of his lung cut out. Where should I go for treatment ? Which is the best clinic and the best doctors. I was really ready to give up until I heard all of your voices! Thank you did much ! I had just felt so alone in this and the doctors I saw just didn’t want to get involved in this disease.

Jump to this post

@prelle1 Hi there. Welcome our group. Do you have a first name? Gosh, it sounds like you are having a rough time right now. How disheartening it is to not be able to get the proper care that you need. Now, more than ever, you will need to advocate for yourself. Mac infection is supposedly a rare thing and many doctors do not know how to properly treat it. First and foremost, we need to find you good medical care. May I ask what state you live in, & what town or city you live on? I can help you to locate a knowledgeable physician. Please do not get discouraged, help is out there; we just need to connect to the right dr.

REPLY
3 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 26, 2018
In reply to @jkiemen "@windwalker I am starting month 9 of the Big 3. Some days I feel good, some..." + (show)
@jkiemen

@windwalker I am starting month 9 of the Big 3. Some days I feel good, some days tired. I am upset that I was declined for Life Insurance.

Jump to this post

@jkiemen, I hear you about the decline in life insurance. I was declined health insurance for many yrs until I got on Disability. Aggrevating!

REPLY
1 reply
prelle1 | @prelle1 | Nov 29, 2018

I was also diagnosed with MAC after Breadt Ca. In 2009. I was so sick that t had no choice but to go on the big 3 meds. It really helped me. I only stayed in for 9 months and wish I had done a year at least. I was able to get my life back and resume normal activities . After my breast ca treatment in 2009 I had gone to China and thinker now that is where I must have picked it up???
Now in 2018 I returned to China on a cruise. My MAC is back . This was a very bad decision for me . I had been getting progressively more tired now I can’t even do anything . I may be ready to start a course of the big 3 again .

REPLY
prelle1 | @prelle1 | Nov 29, 2018
In reply to @windwalker "@prelle1 Hi there. Welcome our group. Do you have a first name? Gosh, it sounds like..." + (show)
@windwalker

@prelle1 Hi there. Welcome our group. Do you have a first name? Gosh, it sounds like you are having a rough time right now. How disheartening it is to not be able to get the proper care that you need. Now, more than ever, you will need to advocate for yourself. Mac infection is supposedly a rare thing and many doctors do not know how to properly treat it. First and foremost, we need to find you good medical care. May I ask what state you live in, & what town or city you live on? I can help you to locate a knowledgeable physician. Please do not get discouraged, help is out there; we just need to connect to the right dr.

Jump to this post

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

REPLY
1 reply
prelle1 | @prelle1 | Nov 29, 2018
In reply to @windwalker "@prelle1 Hi there. Welcome our group. Do you have a first name? Gosh, it sounds like..." + (show)
@windwalker

@prelle1 Hi there. Welcome our group. Do you have a first name? Gosh, it sounds like you are having a rough time right now. How disheartening it is to not be able to get the proper care that you need. Now, more than ever, you will need to advocate for yourself. Mac infection is supposedly a rare thing and many doctors do not know how to properly treat it. First and foremost, we need to find you good medical care. May I ask what state you live in, & what town or city you live on? I can help you to locate a knowledgeable physician. Please do not get discouraged, help is out there; we just need to connect to the right dr.

Jump to this post

Ellen houston tx

REPLY
prelle1 | @prelle1 | Nov 29, 2018
In reply to @jkiemen "@prelle1 Where do you live? Are you restricted by any insurance to where you can be..." + (show)
@jkiemen

@prelle1 Where do you live? Are you restricted by any insurance to where you can be seen?

Jump to this post

Houston , no I have insurance and means

REPLY
View MoreView Less
Please sign in or register to post a reply.