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!

@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!

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@src3acs, NIH is up there near you. They are quite reputable and cutting edge.

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@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!

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@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.

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@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!

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@colleenyoung , please read this.

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@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!

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@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.

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@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!

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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.

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@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!

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@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.

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@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!

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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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@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!

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@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.

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@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!

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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.

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@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!

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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.

Liked by tdrell

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@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!

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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?

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@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!

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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.

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@src3acs….agree with you totally Re this group….amazing…supportive…knowledgeable …empathetic…,the list goes on. When you have time ( and energy) try to review from the start. When you do, you will come across links to various taped workshops given in the past Re NTM and treatment etc.
Also do you know about the site “NTMinfo.org”….interesting. With lots of links.
Questions /comments that I have after reading your messages and that of others
– have you had sputum cultures done…how many and their results?
-have you ever had a sleep study done to see if you have sleep apnea?
– are blood studies normal…do you have anemia?
– you mentioned cardiology… have you had a stress test and nuclear scan.,,,I ask cause 3 years ago I had extreme fatigue….BUT my EKG AND Stress test were normal…..my sharp cardiologist ordered

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@tdrell

@src3acs….agree with you totally Re this group….amazing…supportive…knowledgeable …empathetic…,the list goes on. When you have time ( and energy) try to review from the start. When you do, you will come across links to various taped workshops given in the past Re NTM and treatment etc.
Also do you know about the site “NTMinfo.org”….interesting. With lots of links.
Questions /comments that I have after reading your messages and that of others
– have you had sputum cultures done…how many and their results?
-have you ever had a sleep study done to see if you have sleep apnea?
– are blood studies normal…do you have anemia?
– you mentioned cardiology… have you had a stress test and nuclear scan.,,,I ask cause 3 years ago I had extreme fatigue….BUT my EKG AND Stress test were normal…..my sharp cardiologist ordered

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@src3acs….continuation…my iPad rebelled……my sharp cardiologist ordered a nuclear scan which showed an issue..cardiac catheterization showed that my right coronary artery was 99% blocked….stents put in…..heart damage avoided…half of energy returned but within a few months I had the cough appear.
-might you have allergies….If I recall from visiting our son……your area has lots of greens etc.
– where might you have caught the NTM? American Thoracic Society (ATS) has called various parts of country hot beds..
Florida,,,SE Wisconsin where I live…Oregon and Arizona I believe,,,,Hawaii.
Hot tubs….soil….shower heads…hot water heaters…on and on
Tdrell

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@tdrell ….hi there and thank you for your response. Lets see where to start. I had an echocardiogram on my heart almost a year ago. Did a sleep test over the summer…all normal. Just has blood work done 2 months ago all normal expect my Vit. D is low again and I do take supplements every day. No sputum cultures because a biopsy, then wedge resection, and bronchoscope all showed positive for MAC. Yearly CT show the MAC and bronchiectasis. Where the MAC came from I do not know. Starting at age 17 I had a spontaneous pneumothorax……again in my early 20's and I was a smoker at the time. Had surgery on both my lungs by the time I was 21. Had a few bouts with pleurisy, in my 20's and 30's and had pneumonia 3x in my 30's. Quit smoking 16+ years ago and I'm in my early 50's now. Spent some time in hot tubs in my 20's and I've been to Florida several times. Like you said there is the shower head and soil. Yes, it's very green where I live but I have never had allergies. Not to say I can't get them now. I have had shortness of breath for a year or so now and I use ProAir Respiclick when needed……the fatigue would come and go…..now it's here more often. By 2pm yesterday I wanted to crawl under my desk and take a nap. Today not as tired. I over sleep just about every morning! To be honest…sometimes I am just too tired to take a shower. Going for a pulmonology follow-up the 12th. Maybe I need a new pulm function test to see if there are any changes.

I will say I am happy to hear you caught the blockage in your heart before there was any damage.

I am so grateful for the responses I am getting from everyone. I will take a look around and see what other information I can find. Thank you!

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