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!

Just checking to see if I can get in.

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Jane,
Im so sorry to hear of all your going through. I can tell you of my experience with MAC that the exhaustion has had serious bouts to the point of barely wanting to or being able to move. My last bout of it I went off the big 3 as prescribed and it seemed to stop the cycle. I think only a pulmy with experience in MAC could tell you whether to get treated. I have a feeling its the meds that cause the fatigue .I could be wrong. ONly the truth is the meds are very strong and everyone has there ways of adapting/ or not, biologically that is. For me I think the meds cause the fatigue only if I get the flu and Im not on the meds I dont pick up again and usually its a sign that the bacteria are still lurking around. The other thing that helps with the fatigue is finding just the right balance of exercise and good solid rest are I think top priorities in steering clear of possible problematic side effects.
I hope you are under good care that you trust and keep up the work, its worth every moment.
Deborah

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@irene5

This is a tough one! In reading the other posts I ran across “ you can put off treatment if you want to.” That is a pretty standard answer when your symptoms are shortness of breath and extreme fatigue. Add loss of 18%body weight for me. The bottom line is that treatment is inevitable. If you wait – maybe – just maybe there will be a less toxic treatment. The reason many doctors leave treatment up to the patient is because the treatment is grueling for most. I have been on it three times and always have to be taken off the meds. Some people are able to tolerate them. Good luck with your decision.

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I was told there is the possibility that you can get over it on your own. My guess would be that would only be the case if a person had a mild case….but it’s just a guess. Is this not true?

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@ling123

MAC usually occurs hand-in-hand with bronchiectasis. We all know that the MAC bacteria exist everywhere. But only certain section of the population gets the infection while the rest are not affected. My understanding is that having bronchiectasis is one of the main causes of having MAC infection because our lungs are weekend by the disease and the damaged bronchial tube walls interferes with smooth travel of the phlegm up and down the tubes. When the phlegm gets trapped in the tiny pockets in the bronchial tube walls, the bacteria in the phlegm can fester. People with healthy lungs are unlikely to be infected for that reason. And for the same reason, we can be re-infected by the same bacteria even after being treated with drugs.

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What are the usual symptoms of bronchiectasis?

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@windwalker

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

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I went to their web page and found it to be confusing. I didn’t see anything about treating MAC. I must have navigated wrong???. And I did not see how you can get to see someone…. somehow it looked to me like it was all research.

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@debminuet

Jane,
Im so sorry to hear of all your going through. I can tell you of my experience with MAC that the exhaustion has had serious bouts to the point of barely wanting to or being able to move. My last bout of it I went off the big 3 as prescribed and it seemed to stop the cycle. I think only a pulmy with experience in MAC could tell you whether to get treated. I have a feeling its the meds that cause the fatigue .I could be wrong. ONly the truth is the meds are very strong and everyone has there ways of adapting/ or not, biologically that is. For me I think the meds cause the fatigue only if I get the flu and Im not on the meds I dont pick up again and usually its a sign that the bacteria are still lurking around. The other thing that helps with the fatigue is finding just the right balance of exercise and good solid rest are I think top priorities in steering clear of possible problematic side effects.
I hope you are under good care that you trust and keep up the work, its worth every moment.
Deborah

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@debminuet The meds knocked me out also for around 18mths then I adjusted a bit, still tired but able to do more, pretty bad, but worth it to this point. Take care

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@sylvermoon8

I went to their web page and found it to be confusing. I didn’t see anything about treating MAC. I must have navigated wrong???. And I did not see how you can get to see someone…. somehow it looked to me like it was all research.

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@sylvermoon8 I looked up NIH, and I guess they are strictly research. Not sure if they take patients in like Mayo does. They do have a number for patients wanting to be included in research. I received successful treatment at Mayo Clinic; but I know that they use my medical records for their research. Here is the number for patient intake at NIH. You can ask about treatment there, or ask for recommendations for nearby clinics that may be a spin-off from them. Here is the number: 1-800-411-1222

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@sylvermoon8

I went to their web page and found it to be confusing. I didn’t see anything about treating MAC. I must have navigated wrong???. And I did not see how you can get to see someone…. somehow it looked to me like it was all research.

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NIH is a federal government agency, whose charge is biomedical & public health research. In general, it sponsors studies done in other venues, or collects and analyzes data from studies, journals and reports. NIH is not (as far as I know) doing primary patient care, but through your physician you may be a participant in one of their studies. I look to NIH as a source for scientifically vetted information. Perhaps the previous poster was referring to "NJH," short for National Jewish Health, which is a big & well-respected provider of care for lung ailments, does a lot of research on the issues, and hosts an annual(?) conference on Bronchiectasis and related infections.

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@sueinmn

NIH is a federal government agency, whose charge is biomedical & public health research. In general, it sponsors studies done in other venues, or collects and analyzes data from studies, journals and reports. NIH is not (as far as I know) doing primary patient care, but through your physician you may be a participant in one of their studies. I look to NIH as a source for scientifically vetted information. Perhaps the previous poster was referring to "NJH," short for National Jewish Health, which is a big & well-respected provider of care for lung ailments, does a lot of research on the issues, and hosts an annual(?) conference on Bronchiectasis and related infections.

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I seem to be having some trouble navigating the bronchiectasis site lately, but wanted to share that I have been diagnosed for about three years and have not had MAC or NTM infections. I have had a couple illnesses that I became more sick than most people and required short antibiotic interventions. However, fatigue has been an issue that has overridden my life since this illness has taken hold of my life. It just happens to wax and wane in whatever nature it feels like taking……I concentrate on keeping everything as regular as I can-eating, sleeping, exercising (very lightly or I get exhausted)…..and I try to keep doing my twice daily treatments as regular as possible…..I am grateful for my “new normal” and all of you as you give me so many wonderful ideas and support!

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@migizii, sorry to hear you're having some challenges with navigating Connect. You can find helpful tips on how to use Connect here: https://connect.mayoclinic.org/get-started-on-connect/ Or write to us using this form https://connect.mayoclinic.org/contact-a-community-moderator/ I'm happy to help you get things figured out.

Migizii, it sounds like the fatigue you experience is unpredictable. Is that true or have you found patterns to the fatigue that make it easier to manage?

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@ethanmcconkey

@migizii, sorry to hear you're having some challenges with navigating Connect. You can find helpful tips on how to use Connect here: https://connect.mayoclinic.org/get-started-on-connect/ Or write to us using this form https://connect.mayoclinic.org/contact-a-community-moderator/ I'm happy to help you get things figured out.

Migizii, it sounds like the fatigue you experience is unpredictable. Is that true or have you found patterns to the fatigue that make it easier to manage?

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Thanks for your response, however it didn’t show up on my email account….sometimes they do and sometimes they don’t, even though I am “following” the group.” My fatigue is unpredictable and I do get good sleep. It’s frustrating especially as I’m still working full time…..I know if I don’t get enough sleep, the next day is extremely challenging. Also, I have to make sure I eat regularly and keep a balanced diet to ward off fatigue. I need to find some kind of exercise that is more consistent and enjoyable. I broke my foot, and it is now in the rebuilding stage so it’s still sore-making exercise uncomfortable (unless I’m in a therapy pool, but I don’t have access right now due to my work hours). I’m hoping to get some access next month🤞Thanks again for thinking of me…..I will also try doing a hard off on my tablet and then restart. Perhaps that will help!

Liked by Brenda R.

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@migizii

Thanks for your response, however it didn’t show up on my email account….sometimes they do and sometimes they don’t, even though I am “following” the group.” My fatigue is unpredictable and I do get good sleep. It’s frustrating especially as I’m still working full time…..I know if I don’t get enough sleep, the next day is extremely challenging. Also, I have to make sure I eat regularly and keep a balanced diet to ward off fatigue. I need to find some kind of exercise that is more consistent and enjoyable. I broke my foot, and it is now in the rebuilding stage so it’s still sore-making exercise uncomfortable (unless I’m in a therapy pool, but I don’t have access right now due to my work hours). I’m hoping to get some access next month🤞Thanks again for thinking of me…..I will also try doing a hard off on my tablet and then restart. Perhaps that will help!

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@migizii Sleep is the ball game for me! Especially when trying to work or watch grandkids!

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@migizii

Thanks for your response, however it didn’t show up on my email account….sometimes they do and sometimes they don’t, even though I am “following” the group.” My fatigue is unpredictable and I do get good sleep. It’s frustrating especially as I’m still working full time…..I know if I don’t get enough sleep, the next day is extremely challenging. Also, I have to make sure I eat regularly and keep a balanced diet to ward off fatigue. I need to find some kind of exercise that is more consistent and enjoyable. I broke my foot, and it is now in the rebuilding stage so it’s still sore-making exercise uncomfortable (unless I’m in a therapy pool, but I don’t have access right now due to my work hours). I’m hoping to get some access next month🤞Thanks again for thinking of me…..I will also try doing a hard off on my tablet and then restart. Perhaps that will help!

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Hi @migizii Just noticed that you are looking to get back to a “therapy” swimming pool. Pools are very high sources of mycobacterium.
Although you do not have NTMs now, bronchiectasis leaves you susceptible. I learned about pools and hot tubs being a source of infection from this Mayo site. https://www.google.com/url?sa=t&source=web&cd=12&ved=2ahUKEwiq5Zaf1MrkAhVrg-AKHdgjC-UQFjALegQIAxAB&url=https%3A%2F%2Fonlinelibrary.wiley.com%2Fdoi%2Fpdf%2F10.1046%2Fj.1365-2672.1999.00909.x&usg=AOvVaw2maBwknTQCas398E3gYMMF
Kate

Liked by lorifilipek

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@macjane

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

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Hi there Frustrating.I believe that if there’s a possibility that you could feel better and I definitely didafter I started the treatments and yes the medications can be rough —-but doesn’t mean that you’re going to get any of the side effects. I was scared but I actually have not had any SE’s and I’ve been on treatment for about five weeks of five anabiotic‘s and I don’t cough 95% as much as I did and I was going through a big Kleenex box every day😫😫 now I don’t ——-that to me was well worth the treatment I am still a little fatigued and tired if I do more than one “bigger” thing a day, but I can contend with that if I take a nap in the middle of the day. Good luck to you in decisions. A Good Dr who knows NTM well, is a Must!!!
I hope you will make a decision best for you!!!!
Sincerely Judy

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@migizii

I seem to be having some trouble navigating the bronchiectasis site lately, but wanted to share that I have been diagnosed for about three years and have not had MAC or NTM infections. I have had a couple illnesses that I became more sick than most people and required short antibiotic interventions. However, fatigue has been an issue that has overridden my life since this illness has taken hold of my life. It just happens to wax and wane in whatever nature it feels like taking……I concentrate on keeping everything as regular as I can-eating, sleeping, exercising (very lightly or I get exhausted)…..and I try to keep doing my twice daily treatments as regular as possible…..I am grateful for my “new normal” and all of you as you give me so many wonderful ideas and support!

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What is NTM? I want to know the whole words. Thanks.

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