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.

Jane S. Brown | @macjane | Jul 11, 2018
In reply to @macjane "Again, thank you for your time. Our son lives just miles away from Cleveland Clinic." + (show)
@macjane

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

Jump to this post

Terri, does anyone have a doctor that can recommend at Cleveland Clinic? I have been through nightmare here in SE MI.

REPLY
Jo Ann K | @jkiemen | Jul 11, 2018
In reply to @src3acs "@tdrell ....hi there and thank you for your response. Lets see where to start. I had..." + (show)
@src3acs

@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!

Jump to this post

@macjane You really need to get the VItamin D levels up with D3 or a shorter course or Ergocalciferol at high dose the maintain with D3. My infectious disease MD told me that is the best way to help your immune system. Not sure how low you are, but at least start taking something

REPLY
Jane S. Brown | @macjane | Jul 11, 2018
In reply to @src3acs "@tdrell ....hi there and thank you for your response. Lets see where to start. I had..." + (show)
@src3acs

@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!

Jump to this post

Thank you so much. Cannot get doctor to respond. Told depression can be problem with low level of Vitamin D.

REPLY
nick52 | @nick52 | Jul 11, 2018
In reply to @src3acs "@tdrell ....hi there and thank you for your response. Lets see where to start. I had..." + (show)
@src3acs

@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!

Jump to this post

@macjane if you take some kind of medications you may want to check the secondary effects of them.  You may be able to solve your irregular bowel with probiotic. I have experience it in the pass. 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 12, 2018
In reply to @macjane "Again, thank you for your time. Our son lives just miles away from Cleveland Clinic." + (show)
@macjane

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

Jump to this post

@macjane, Hopefully someone in our group might know of one. I can dig around and see what I can find out. Get back to you on this.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 12, 2018
In reply to @macjane "Again, thank you for your time. Our son lives just miles away from Cleveland Clinic." + (show)
@macjane

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

Jump to this post

@macjane, Jane, I found two at the Cleveland Clinic who are listed with NTMinfo.org as specialists that are experienced with treating bronchiectasis and mac. The first one is a young doctor: Elliot Dasenbrook, M.D. he got a 5 star rating, he is in Pulmonary /Critical Care his ph number is 216-445-6503. And 216-445-3082. The other pulmonologist is Bohdan Pichurko, M.D. same phone number as above. Cleveland Clinic takes just about all insurances. Good luck. Let me know what you find out.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 13, 2018
In reply to @macjane "Again, thank you for your time. Our son lives just miles away from Cleveland Clinic." + (show)
@macjane

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

Jump to this post

Hello @macjane

While I do not have the same health problem that you do, I also live in SE Michigan and went to Cleveland Clinic for vocal cord surgery several years ago. It is a great facility and I believe a second opinion there would be a good first step in dealing with your issues.

I'm wishing you well and hope to read more about how you are doing.

Teresa

REPLY
tdrell | @tdrell | Jul 14, 2018
In reply to @tdrell "@src3acs....agree with you totally Re this group....amazing...supportive...knowledgeable ...empathetic...,the list goes on. When you have time (..." + (show)
@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

Jump to this post

@macjane...wondering if your lack of sleep and nightmares are a result of a form of sleep apnea/obstruction. Google it....My sleep apnea was discovered by chance when l had the bronchoscopy for my cough. I had a subsequent sleep study that show my breathing stopped 43-47 times an hour. Whereas I did not have the typical symptoms....waking with headache. feeling groggy all day etc....l did have vivid dreams...ended up jumping out of bed several times to avoid being gunned down (in nightmare) etc.
Have been on CPAP for over a year now.. do not have those dreams anymore except when mask not fit.ting face correctly.
There are other reasons for vivid dreams....some medications may cause that....google insomnia. tdrell

REPLY
franthony | @franthony | Jul 26, 2018
In reply to @src3acs "Hi there...thank you for responding. I have had a PET scan, CT scan every year. Had..." + (show)
@src3acs

Hi there...thank you for responding. I have had a PET scan, CT scan every year. Had a bronch....blood work and had my heart check. Only MAC and Bronchiectasis results. My fatigue is far worse than my shortness of breath. My husband is convinced that my SOB is from the MAC and wants me to get treated. The doctors are usually ready to treat then my CT doesn't show change so they say.... "Well you can put off the treatment if you want to". I'm just confused. Do I or don't I need treatment. And....my main questions, is fatigue a big part of MAC? I understand you aren't a doctor. I guess I am venting and asking questions at the same time. Thank you 🙂

Jump to this post

@windwalker and others, I am curious as to whether others have had issues timing taking their pills. The first four weeks I took them first thing in the morning, which meant I had to wait to have my morning chai latte. So week 5 I set up the Rifampin and a covered glass of water on my bedside table (I discovered last year that my cat was enjoying drinking from my glass during the night!), and took those two pills in the wee hours of the morning. End result, I was so sick all that week, nauseated by late afternoon, unable to eat (yet I didn't even lose one single lb.), and so tired I was sleeping 12–14 hours each night. So week 6 I decided to have my chai latte when I get up, walk the dogs, keep busy for another hour, take pills, keep busy for another hour, then finally enjoy a hearty brunch. By week 7 I started feeling much better, and although I still can only do gardening or other physical tasks for two hours before I become too tired to carry on, at least I have begun to start accomplishing some things again.

Has anyone else had to adjust their MWF morning schedule due to side effects?

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 26, 2018
In reply to @src3acs "Hi there...thank you for responding. I have had a PET scan, CT scan every year. Had..." + (show)
@src3acs

Hi there...thank you for responding. I have had a PET scan, CT scan every year. Had a bronch....blood work and had my heart check. Only MAC and Bronchiectasis results. My fatigue is far worse than my shortness of breath. My husband is convinced that my SOB is from the MAC and wants me to get treated. The doctors are usually ready to treat then my CT doesn't show change so they say.... "Well you can put off the treatment if you want to". I'm just confused. Do I or don't I need treatment. And....my main questions, is fatigue a big part of MAC? I understand you aren't a doctor. I guess I am venting and asking questions at the same time. Thank you 🙂

Jump to this post

@franthony

Great idea about changing the timing of your meds (especially since it helped you feel better). You can always check with your prescribing doctor or your pharmacist to be sure that your timing of the pills will result in the best results, but I'm glad to hear that you are doing better now.

While I don't have MAC or other lung problems, I have adjusted the timing of my meds as well, and I've been told that as long as you take them at the same time every day that it is generally OK.

So, check with your pharmacist if you have any concerns about the medications' effectiveness and the timing of them.

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