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!

Hi everyone……..I had a follow up with my Pulmonologist and they went over my recent CT scan. No visible changes…..did mention some mucus plugged in the bronchiectasis. She wants be to use my inhaler 2x a day along with a flutter valve. I haven't been to the medical supply store yet to purchase. She showed me how it works. Does this really help? Again….I don't have a cough, just fatigue and some SOB.

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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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I had Mac and Bronc. for seven years before I started treatment. The first three or four years I was fairly normal but then the fatigue became extreme. I went on treatment but began to lose my hearing and came off the meds. Since then, I live with daily fatigue. Some parts of the day I can barely do anything, especially in the mornings. I've lost 20 pounds and look gaunt. But there is usually some part of the day when I'm less tired and can run errands and see friends. My scans show slow advancement of the MAC but I think the bronchiectasis has gotten worse. Fatigue, I've been told, is a primary condition of the disease. I am using a nebulizer with a saline solution to help clear my lungs daily. I find it difficult to do, being short of breath, but I do my best and it does help. I also have energy drinks handy and carry one with me on errands. I do not regret my decision to wait a long time before trying the drugs. I think the feedback on this forum is it's an individual decision…either way you are taking a chance.

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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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Are you on any medications at all. Is your sputum clear. Maybe some type of nebulized medication would help??

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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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@dmarks Hi Debbie. Was wondering how you are doing. How is the clofazamine working? Are you feeling any better? I hope so. -Terri

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@src3acs

Hi everyone……..I had a follow up with my Pulmonologist and they went over my recent CT scan. No visible changes…..did mention some mucus plugged in the bronchiectasis. She wants be to use my inhaler 2x a day along with a flutter valve. I haven't been to the medical supply store yet to purchase. She showed me how it works. Does this really help? Again….I don't have a cough, just fatigue and some SOB.

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@srs3acs Hello my fellow Virginian. Have been wondering how you are doing these days. Are you on meds now? Are you doing the nebulized saline treatments by chance?

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Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

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@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

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@cld120, Thank you for sharing that. Your post is right on time with something I was going to share tonight. I went for my annual wellness check-up today at the Mayo in Florida. Yes, I said wellness check-up. Am I well? Technically, no. I still have bronchiectasis and the propensity to be full blown infected with mac, pseudomonas, or any other kind of opportunistic organism. But! My x-rays look mostly unchanged, my oxygen levels have come up, my six minute walk is normal now, and I haven't coughed in two years. My pulmonologists generously gave me extra office time to ask him questions about mac and treatment amoung other lung related talk. We discussed the Big 3 antibiotic regimen. I asked him why he never suggested putting me on it. He said he would only put a patient on it if they had cavitary mac. (Pseudomonas can also cause cavities in the lungs) He said whenever he gets new mac patients that their previous dr had put them on the Big 3 & they are NOT cavitary, then he takes them OFF! He said the Big 3 is over-drugging. I asked him about my mac treatment (listen @rmason) he said "I am not treating your mac, never have. I am treating your bronchiectasis." I was blown away! I said "Wait, whaaaat?" He repeated it and explained. The alternating monthly antibiotics I take are actually a prophylaxis to keep any kind of infection from my lungs for the bronchiectasis. He said the mac recedes on it's own most of the time. The milder antibiotics I was put on; chased it down to a very small amount and the inhaled saline makes the lungs unsuitable for mac to inhabit. He said there is no cure currently for mac, we can only keep it at bay. It is like rust, it will return. Mac returns for the majority of people who have it, so there is no point in putting the Big 3 toxic drugs in your system. There are members who have posted that that is true from their own experience. Every single one of us should be nebulizing 7% sodium chloride 2x day. It is salt mist, harmless. and it is very effective for minimizing mac. He said it is all a crap shoot no matter what with mac treatments. I will share more tomorrow. What are your thoughts on this? @macjane

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@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

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@cld120 Do you do nebulized saline?

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@windwalker
This information is so interesting thanks for sharing!
I was never treated for the mycobacteria abcessus and it went away. I tested positive for a year then have tested negative for the last year… fingers crossed.
I do saline twice a day, the airway clearance vest daily and lots of herbs and supplements.
But we need to be diligent so this and other stuff doesn't return.

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@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

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This makes some sense, but I don’t think any physician in another facility is going to follow a recommendation for a medical treatment or regimen that has not been studied or published-I work in the medical field and know this to be true.

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@pfist Good morning. I am glad your mac receded on it's own. You are lucky with that. Mine just made me sick and cough non-stop for years. I had to go on some antibiotics at least. I am thrilled that you are doing the saline. We ALL need to be doing that.

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@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

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It is odd how some MD's tell you to hold off until you really need to on the BIG 3 and other's tell you to go on it. I am still waiting and waiting for the Nitric Oxide study results of a small study and the FDA to allow the company AIT Therapeutics to start their Inhaled Nitric Oxide treatment. Some people have also done Inhaled Amikacin and I have also heard of trying other antibiotics

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@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

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I also love how they scare us with the severity of the disease but in general, I feel this county and our CDC and FDA and pharma companies do not take this seriously and we are left to flounder.

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@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

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@rmason I remember you had said that in a previous e-mail to me, so I asked my dr if his. MAC treatment plan was published. That is when he said he isn't treating my mac , rather is treating my bronchiectasis. He said he has thought about publishing his outcomes. He then followed up with "his proof that his treatment plans work is by the successes like me." He also stated that the way he treats mac is a recipe they tend to follow there at Mayo. I told him that wasn't entirely true, that I have Connect members that go to Mayo and get put on the Big 3. The expression on his face was that of disappointment. He then said "I know, there are a couple of drs there still sticking to the old school way of treating it (at the Rochester Mayo). Pretty much, no drs at the Mayo in Florida would use the Big 3 to treat mac unless it was a severe and cavitary case. You are in charge of your own health and treatment. YOU can ask to try a different treatment plan and tell them you want to try specific drugs. State specifically what drugs you want to try. Most will work with you. Let me ask you this, does your dr have published success stories on using the Big 3?

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@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

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@jkiemen There is inhaled cipro too now, but I just use the pills.

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