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!

@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!

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@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

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@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!

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

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@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!

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@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. 

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@macjane

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

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@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.

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@macjane

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

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@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.

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@macjane

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

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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

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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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@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

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@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 🙂

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@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?

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@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 🙂

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

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@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.

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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.

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