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!

@soflo

@windwalker Terri or anyone I’ve been reading about Dr. Timothy Akasamit at Mayo in Minnesota. I live in South Florida can anyone recommend a Mac specialist here at the mayo in Florida? I’ve been on here for hours reading so much good information. I do believe I really need to be checked by a Doctor that specializes in this. Thanks again for any input.

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so true…

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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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@megan123 Hi Jen. I am not sure what these statements pertains to exactly.

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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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@src3acs Hi there! I share your frustration and amazement at how much sleep I require! My poor husband never knows how to plan for anything!

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@ling123

Hi @src3acs, I, too, was diagnosed with bronchiectasis and MAC over 3 years ago. I have not taken any drugs for MAC (there is no effective drugs for bronchiectasis). I don't know for sure if I'm still infected with MAC. But because my last chest X-ray indicated improvement in my lung conditions, I assume I'm no longer infected. Since there is no cure for bronchiectasis, the best we can do is to manage it in order to slow down the progression of the disease. I have not had any symptoms of shortness of breath or fatigue. Not even when I was first diagnosed. In fact I'm still physically very active, playing tennis 2-3 times a week without any of these problems. I'm not a doctor. But I suspect that the shortness of breath you are experiencing could cause the fatigue because of lack of oxygen in your blood. Is it possible that you might have other issues with your lungs besides bronchiectasis and MAC? Have your doctors looked into that possibility?

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I am always exhausted and have a cough almost all the time.

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@ling123

Hi @src3acs, I, too, was diagnosed with bronchiectasis and MAC over 3 years ago. I have not taken any drugs for MAC (there is no effective drugs for bronchiectasis). I don't know for sure if I'm still infected with MAC. But because my last chest X-ray indicated improvement in my lung conditions, I assume I'm no longer infected. Since there is no cure for bronchiectasis, the best we can do is to manage it in order to slow down the progression of the disease. I have not had any symptoms of shortness of breath or fatigue. Not even when I was first diagnosed. In fact I'm still physically very active, playing tennis 2-3 times a week without any of these problems. I'm not a doctor. But I suspect that the shortness of breath you are experiencing could cause the fatigue because of lack of oxygen in your blood. Is it possible that you might have other issues with your lungs besides bronchiectasis and MAC? Have your doctors looked into that possibility?

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@america…I had a constant cough for 5 years. It is exhausting and the antibiotics seemed to make me feel sicker. I understand where you are right now. Don't give up. This site has many suggestions.
I bought the book The Chronic Cough Enigma by Dr jamie Koufman. It has questions to point you to the right cause. Mine was acid reflux and I no longer have the constant cough, but I had to change my diet and sleep upright. The energy is returning, so it's worth it.

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@ling123

Hi @src3acs, I, too, was diagnosed with bronchiectasis and MAC over 3 years ago. I have not taken any drugs for MAC (there is no effective drugs for bronchiectasis). I don't know for sure if I'm still infected with MAC. But because my last chest X-ray indicated improvement in my lung conditions, I assume I'm no longer infected. Since there is no cure for bronchiectasis, the best we can do is to manage it in order to slow down the progression of the disease. I have not had any symptoms of shortness of breath or fatigue. Not even when I was first diagnosed. In fact I'm still physically very active, playing tennis 2-3 times a week without any of these problems. I'm not a doctor. But I suspect that the shortness of breath you are experiencing could cause the fatigue because of lack of oxygen in your blood. Is it possible that you might have other issues with your lungs besides bronchiectasis and MAC? Have your doctors looked into that possibility?

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@egayle if you had acid reflux and you still have to sit to sleep you may want to consider taking Milk Thistle from Hübner liquid formula.  It is a life saver. Sometime our liver doesn’t digest all the bile and it stays in the stomach more than it should and

milk thistle help a lot.  My husband was the same way and he is sleeping normal now and he takes it when need it now.  I make sure he takes one or two table spoon a week.  He lives normally now! Check the website for Hübner. Have a lovely day! Nick

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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,Terry–Thank you for all of the information!! This site has been so helpful. I have had Bronchiectasis since childhood. When I get a cough, it has always been horrible and I get sicker and sicker until I get on an antibiotic. It then clears up. I'm very active, have always been a runner and love being outdoors. Last summer I started to feel fatigued ALL the time. Not coughing not sick, just tired. Then one evening, I felt like I couldn't catch my breath. I suspected it has something to do with my lungs. Long story short, they did a CT scan and found nodules. Pulm. doc. gave me option of try to treat (not knowing what it was) with antibiotics, or do bronch. I opted for broch, and they found the MAC. I'm REALLY glad they found it right away. Had I not had a history of bronchiectasis, I think it would have taken forever for them to figure it out, because I wasn't coughing and didn't feel sick–just SO tired. I'm a little over 6 months on the BIG 3, and have only had a few bad days when the extreme fatigue came back. Just did a scan last week, do not have results yet, but will definitely complete the 18 month regime. I hope and pray all the time they will find another treatment, because the thought of reinfection terrorizes me. I do think exercise helps me a lot. Some days I have to really push myself to do it, but in the long run it seems to really help. Thanks again for all you do! You REALLY are an inspiration!!

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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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@lisanova Hi there, I agree with you exercise is key! Like you I’ve always been active, was an athlete through college and coached & taught PE for years. I have started suffering with extreme fatigue, too. Gotta keep fighting!

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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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@lisanova I am glad you’ve joined our chat site! You will find out that many of us had different experience. Today my doctor spoke to me about young children getting bronchiectasis who can live with it without any effect of MAC.  All of a sudden they do a bronco

and find you have a MAC.They happen to do a bronchoscopy and found it. I do not understand why they gave you the big 3 just because you were tired.  Was there a lot of infections in your lungs.  I have never taken the big 3 and when i had some coughing or

felt more tired when exercising I was taking Clear Lungs to clear my lungs and I would be ok! Windwalker is a better expert with antibiotic than me for sure.  If you are on antibiotic you may want to consider taking High dosage of Probiotic to keep your defence

system with good bacteria because the antibiotic will destroy the good one also. Better be safe then sorry!  Nick!

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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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@alleycatkate & everyone!  KATE as per our phone conversation here is the results! Yesterday was a very good day with good news!  My pulmonary doctor gave me my result of the CTScan. My scan show a very stable and show nothing abnormal to a bronchiectasis lung.

 Very glad ! To me it means whatever I do is working for now.  The doctor explain that the micro nodules on the lungs is the dilatation of the tree buds and when it is infected the nodules are bigger on the scan.  It is not showing any of it!  He says that

he will recommend a CTScan in 2 years (yeah less radiation) but if I feel things aren’t going find to give a call to his secretary and he will take care of it right away . He gave me a prescription of Avelox (antibiotic) in case I start a cold or beginning

of congestion due to a cold I must take it for 7 days to prevent it. He has always done that because of my bronchiectasis is more prone to pneumonia.  I have the best pulmonary doctor I could ask for.  Thanks to him if I am doing so well because he has followed

me since 2009. He is cute lol and a sweetheart! He always take the time to talk and answer all my questions. I know one thing I LOVE THOSE DOCTOR OHIRRA’s PROFESSIONAL PROBIOTICS AND MY MILK THISTLE TO KEEP MY STOMACH Acid free!  I THING IT IS A GOOD PREVENTION,

Have a nice day everyone!  My divine energy is with you all! Nicole

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@soflo

@alleycatkate Hi Kathy, I would this journey with you for sure!! As I said on my post to Terri, I too have to check on my HMO, I guess Mayo would answer that. I’m wondering how do we start this. Do we call Mayo directly? I asked Terri for some guidance on how to begin. Kathy, thankyou so much for sharing your daily routine. I am walking every night and I too will begin adding exercise to it. I’ve started my vitamin D again and will look into the one you mentioned. I said to Terry @alleycatkate how wonderful it would be if we start this trip and met her at Mayo. BTW, yeah my gp said I’m not symptomatic but I’m confused because I have sob, mucus(its not clear at times) and fatigue, so aren’t those symptoms? So I’ll have to discuss with him what he meant by that at my next appt…. I too want to be well and be proactive. As you said many different opinions and approaches are a little overwhelming and this is new to me so in the end I hope I know what I am doing. Please stay in touch and let me know what your next step is. Terri if you read this thank you so much for always responding. Hugs Dee

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@alleycatkate Hey friend, I'm so sorry it's been awhile since I've been on. So nice talking with you on the phone and yes if we can't go to the hospital together we will still go on this journey together. Thanks again. NY gals are cool ;)…I will be checking on which hospital to journey to. I will post when I know something so that others can get some info that may help them and lets talk soon…..xx Dee

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@windwalker Hi Terri, Its been awhile. I was having trouble login on but it was because I was doing it from my phone and just got very busy at work. How are you? Hope all is well. I'm waiting on to see if I visit Mayo or the Jewish Hospital in Denver. I will post if and when it works out for me. xx Dee

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