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!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 22, 2018
In reply to @jkiemen "@alleycatkate I think we have all been there, being told we have a life changing health..." + (show)
@jkiemen

@alleycatkate I think we have all been there, being told we have a life changing health issue then being told not to do anything. How can that be. We of course want to do something to help ourselves. Personally, I wish that I started the treatment earlier before the bacteria increased. I tried antioxidants the Bidens and Corelepsis that one of our members used but I did end up starting treatment. I got a second opinion and got the impression they may have continued to wait a bit. But nonetheless, I started treatment with the "Big 3" and I think stopping early could lead to resistance, so I would like to stick it out as long as I can. One MD told me the best thing for your immune system is to make sure your Vitamin D level is normal and supplement that. You should ask to have your Immune system tested, blood test.

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@jkiemen You know, @irene5 said the same thing; that she wished she had started the Big 3 sooner. I am wondering if you & Irene had started out sooner instead on the regimen I am doing now with alternating antibiotics; if that might have been a good thing? I am not trying to prove a negative; only that starting treatment earlier instead of waiting doesn't neccessarily have to mean treatment with the Big 3. (Posted for the benefit of the newly diagnosed mainly)

REPLY
alleycatkate | @alleycatkate | Jun 22, 2018
In reply to @soflo "@windwalker Terri or anyone I’ve been reading about Dr. Timothy Akasamit at Mayo in Minnesota. I..." + (show)
@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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@windwalker ...The time, energy and caring you put into all of us is actually sort of mind boggling...and You probably know more than most Drs on this disease! I am thinking that if I do not have an issue with changing insurance plans that I will be heading for Leventhal come January. It makes the most sense to me. Dr Michele Mayholtz, I know her ..could be the fall back. Thank you, Terri. Kate

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 22, 2018
In reply to @soflo "@windwalker Terri or anyone I’ve been reading about Dr. Timothy Akasamit at Mayo in Minnesota. I..." + (show)
@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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@alleycatkate You are welcome Kate. Thank you for the kudos. I have been researching this disease since 2005 in search of answers. My resource base has gotten a lot broader as doctors and researchers have been more aware of the growing prevelence of mac. Perhaps you can call Mayo's billing dept and ask them which insurance companies they have seen cover Mayo visits. Have you tried asking your insurance company for a waive in their policy if your physician would call in expressing that you have a rare orphan disease that requires a very good specialist? Or better yet, have your doctor call the insurance company and ask for a waiver.

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Jennifer | @megan123 | Jun 22, 2018
In reply to @soflo "@windwalker Terri or anyone I’ve been reading about Dr. Timothy Akasamit at Mayo in Minnesota. I..." + (show)
@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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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 23, 2018
In reply to @cld120 "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..." + (show)
@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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Brenda R. | @brigby | Jun 25, 2018
In reply to @src3acs "Hi Irene5, I am asking anyone at this point if they had fatigue as a major..." + (show)
@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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america | @america | Jun 26, 2018
In reply to @ling123 "Hi @src3acs, I, too, was diagnosed with bronchiectasis and MAC over 3 years ago. I have..." + (show)
@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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egayle187 | @egayle187 | Jun 27, 2018
In reply to @ling123 "Hi @src3acs, I, too, was diagnosed with bronchiectasis and MAC over 3 years ago. I have..." + (show)
@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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nick52 | @nick52 | Jun 27, 2018
In reply to @ling123 "Hi @src3acs, I, too, was diagnosed with bronchiectasis and MAC over 3 years ago. I have..." + (show)
@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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lisanova | @lisanova | Jul 4, 2018
In reply to @windwalker "@src3acs, As far as treatment goes, different doctors have different ideas about how to treat mac/bronchiectasis...." + (show)
@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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