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!

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Hi Irene5, I am asking anyone at this point if they had fatigue as a major symptom before starting treatment. I have told my husband it's hard for me to understand that I am ill with something when I don't feel sick. I just feel tired. For example….Saturday I watched my niece play college softball for 4 hours. I was so tired I was in bed by 8:30…..woke up at 8:20 the next morning……went to church with my family, had lunch and was back in bed by 1:30 telling my husband I just needed to rest for an hour. Next thing I know it's 4:30 in the afternoon. Got myself out of bed and was back in by 9pm. Today I am still tired but had to go to work. Some days I have energy…..others I just want to sleep. I am not depressed so I can't blame it on that.

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@src3acs

Hi Irene5, I am asking anyone at this point if they had fatigue as a major symptom before starting treatment. I have told my husband it's hard for me to understand that I am ill with something when I don't feel sick. I just feel tired. For example….Saturday I watched my niece play college softball for 4 hours. I was so tired I was in bed by 8:30…..woke up at 8:20 the next morning……went to church with my family, had lunch and was back in bed by 1:30 telling my husband I just needed to rest for an hour. Next thing I know it's 4:30 in the afternoon. Got myself out of bed and was back in by 9pm. Today I am still tired but had to go to work. Some days I have energy…..others I just want to sleep. I am not depressed so I can't blame it on that.

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Funny you say that – and not funny ha ha. I had just retired from 43 years of teaching and the doctor thought, perhaps, I was depressed. I guess that’s just a go to when people are tired. I was lucky a family member is a doctor and sent me for a CT scan. The fatigue is overwhelming as I am sure you know. I do know that the UMass doctors stress having a very good and nutritious diet. Hugs and prayers – it is frustrating because you are darned if you do and darned if you don’t! And there is no definitive answer. You have to do what is best for you and your family.

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@src3acs, Hi there, and welcome to our group. YES! MAC & Bronchiectasis definitely cause extreme fatigue. I combat it with .05 mg of Adderall, (I have ADD) I am prescribed 20 mg, but take only a quarter of the dose and I sometimes use ginsing with royal jelly (bee pollen) that comes in the little bottles. That gives you stamina to go all day without feeling hyped up. The days that I don't use these are spent on the couch all day. My spirit is rearing to go, but the body says "absolutely not". The first important thing I can tell you is; it is crucial that you see a doctor that knows a great deal about this disease. Most doctors are 'old school' and follow the same course of treatment. You also need to see a good Infectious Disease doctor. I was diagnosed in 2005 with MAC. (I had bronchiectasis also, but was never told that. It came up in old dr. reports that went back to 2001.) The doctor wanted me on the BIG 3 antibiotics, but I opted not to. I made that decision after getting a second and third opinion. Plus, I did my homework and found that the drugs can be toxic and hard on your other organs and only had 50% chance of working and that despite treatment; the mac comes back later eventually in many people. After refusing the usual treatment; I was put on Azithromycin and Ciprofloxacin for several months. That knocked the mac down to where I was no longer sick. I should have been routinely tested since 2005, but due to my ignorance and doctors not being on the ball, I was not tested again until 2013. During that eight years I was not treated or tested; my lung function slowly deteriorated. I believe that was due to bronchiectasis. I went to the Mayo Clinic in Jacksonville, Fl. where my doctor there had a different way to treat MAC. He put me on monthly doses of alternating antibiotics. I would do 10 days of ciprofloxacin one month and then 10 days on Doxycycline. I did that cycle for three years and I saw improvement in S.O.B. and no coughing. Today, I have good days and low energy days. I do not cough. My rate of decline is very slow, so am hoping we are slowing down the progression of bronchiectasis. Because this is getting long, I will start a new reply to you about getting treatment.

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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!

REPLY
@windwalker

@src3acs, Hi there, and welcome to our group. YES! MAC & Bronchiectasis definitely cause extreme fatigue. I combat it with .05 mg of Adderall, (I have ADD) I am prescribed 20 mg, but take only a quarter of the dose and I sometimes use ginsing with royal jelly (bee pollen) that comes in the little bottles. That gives you stamina to go all day without feeling hyped up. The days that I don't use these are spent on the couch all day. My spirit is rearing to go, but the body says "absolutely not". The first important thing I can tell you is; it is crucial that you see a doctor that knows a great deal about this disease. Most doctors are 'old school' and follow the same course of treatment. You also need to see a good Infectious Disease doctor. I was diagnosed in 2005 with MAC. (I had bronchiectasis also, but was never told that. It came up in old dr. reports that went back to 2001.) The doctor wanted me on the BIG 3 antibiotics, but I opted not to. I made that decision after getting a second and third opinion. Plus, I did my homework and found that the drugs can be toxic and hard on your other organs and only had 50% chance of working and that despite treatment; the mac comes back later eventually in many people. After refusing the usual treatment; I was put on Azithromycin and Ciprofloxacin for several months. That knocked the mac down to where I was no longer sick. I should have been routinely tested since 2005, but due to my ignorance and doctors not being on the ball, I was not tested again until 2013. During that eight years I was not treated or tested; my lung function slowly deteriorated. I believe that was due to bronchiectasis. I went to the Mayo Clinic in Jacksonville, Fl. where my doctor there had a different way to treat MAC. He put me on monthly doses of alternating antibiotics. I would do 10 days of ciprofloxacin one month and then 10 days on Doxycycline. I did that cycle for three years and I saw improvement in S.O.B. and no coughing. Today, I have good days and low energy days. I do not cough. My rate of decline is very slow, so am hoping we are slowing down the progression of bronchiectasis. Because this is getting long, I will start a new reply to you about getting treatment.

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Would you ever push for Cleveland Clinic? I am at the University of Michigan but could be old school.

REPLY
@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

Many thanks. I heard National Jewish Health in Denver is good. Somewhere I also heard Thomas Jefferson in Philadelphia is quite good as well.

REPLY
@windwalker

@src3acs, Hi there, and welcome to our group. YES! MAC & Bronchiectasis definitely cause extreme fatigue. I combat it with .05 mg of Adderall, (I have ADD) I am prescribed 20 mg, but take only a quarter of the dose and I sometimes use ginsing with royal jelly (bee pollen) that comes in the little bottles. That gives you stamina to go all day without feeling hyped up. The days that I don't use these are spent on the couch all day. My spirit is rearing to go, but the body says "absolutely not". The first important thing I can tell you is; it is crucial that you see a doctor that knows a great deal about this disease. Most doctors are 'old school' and follow the same course of treatment. You also need to see a good Infectious Disease doctor. I was diagnosed in 2005 with MAC. (I had bronchiectasis also, but was never told that. It came up in old dr. reports that went back to 2001.) The doctor wanted me on the BIG 3 antibiotics, but I opted not to. I made that decision after getting a second and third opinion. Plus, I did my homework and found that the drugs can be toxic and hard on your other organs and only had 50% chance of working and that despite treatment; the mac comes back later eventually in many people. After refusing the usual treatment; I was put on Azithromycin and Ciprofloxacin for several months. That knocked the mac down to where I was no longer sick. I should have been routinely tested since 2005, but due to my ignorance and doctors not being on the ball, I was not tested again until 2013. During that eight years I was not treated or tested; my lung function slowly deteriorated. I believe that was due to bronchiectasis. I went to the Mayo Clinic in Jacksonville, Fl. where my doctor there had a different way to treat MAC. He put me on monthly doses of alternating antibiotics. I would do 10 days of ciprofloxacin one month and then 10 days on Doxycycline. I did that cycle for three years and I saw improvement in S.O.B. and no coughing. Today, I have good days and low energy days. I do not cough. My rate of decline is very slow, so am hoping we are slowing down the progression of bronchiectasis. Because this is getting long, I will start a new reply to you about getting treatment.

Jump to this post

@macjane, Cleveland Clinic has an excellent reputation. You can go to their site and see if they have mac/bronchiectasis listed, or look up their pulmonary doctors in the directory and read about what they specialize in. The Mayo Clinic in Rochester is also known for treating mac.

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Again, thank you for your time. Our son lives just miles away from Cleveland Clinic.

REPLY
@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

Terri, thank you so much for your reply. I was diagnosed in 2012. I have seen 2 different Pulmonologist and 2 infectious disease doctors. They seem ready to treat until the do a follow CT scan and say we can wait. My husband thinks it's starting to effect my quality of life…..only due to the fatigue. I don't feel sick……so it's hard for me to rationalize the need for treatment when I don't feel sick. Not sure if I need to go to one of the centers that specialize in MAC/Bronchiectasis. I'm just so confused because I don't feel sick. I'm not sure if that makes sense to anyone. I live in VA…..very close to DC and not too far from Baltimore. Are you aware of any specialists in this area I could talk to.

REPLY
@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

Yes, it all is very confusing. I was diagnosed four years ago and immediately became a patient of National Jewish Health. I had had multiple bouts of walking pneumonia and finally a smart PA decided to do a CT scan and it was actually MAC all along. They traced it back to another CT scan 7 years prior that was misdiagnosed at an emergency room visit. So treatment was delayed that long. After going to NJH I decided to treat it aggressively with 18 months of antibiotics, I could not tolerate ethambutol so they switched me to inhaled amikacin. I had hearing loss and ringing in the ears. I also had two middle lobectomies in Denver by Dr. Mitchell. The surgeries went well and I finished up my meds and was MAC free for one year. It then raise its ugly head again. I do think it never goes away and sits in wait for the right opportunity to attack us again. Of course, I have bronchiectasis as well. I am not on the meds again except this time I am on a trial of clofozamine. All three times a week. I am headed back to NJH in two months and have monthly blood work for liver function. I too, am constantly tired…I also have a pain across my shoulder blades that comes at the end of the day when I am tired. Not sure what this is..Anyone have that. I get depressed as I just retired and want quality of life as we all do. I try to exercise yet am too tired at times. Happy to answer any questions and I live in California..cheers

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