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!

@hydrang3a

@windwalker …thank you for your reply…makes a lot of sense….I have Bronchiectasis too so I understand I will be dealing with repeated bouts of MAC….and repeated exposure to drugs to kill it. Do you currently have positive MAC cultures? If not what drugs are you taking to treat the Bronchiectasis? And aren’t you concerned about the damage to our bodies with all of these ,one term antibiotics?

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@hydrang3a Hi. I never did the Big 3 antibiotics. In 2013, I went on cipro and doxycycline for 10 days a month on alternating months. My mac tested neg after one year on it. I stayed on that regimen as a preventative measure for three yrs. I then caught pseudomonas in 2016 and got that treated w/tobramycin. That knocked it out after 30 days, plus, as a bonus knocked out the constant cough I had foe 10 yrs. I have been on the toby and cipro on alternating months ever since. I still test neg for mac and pseudo. That doesn't mean that I am cured, it just means there is no detectable amount. Though infection free: I still have bad fatigue that is due to having bronchiectasis.

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@hydrang3a

@windwalker ….I enjoy reading your comments about fatigue and this relentless disease. However I was surprised to see you suggesting a CT every 2-5 years……I understand you shouldn’t be exposed to too much radiation but to check the progression of this disease or hopefully to get encouraging news that the disease is receding wouldn’t you suggest biannual CT scans?

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@hydrang3a Biannual is as close together as they deem safe. I have not had one since 2016. I am doing so well, that my dr didn't feel that I needed it. My chest had zero crackles or wheezing.

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@windwalker

@hydrang3a Hi. I never did the Big 3 antibiotics. In 2013, I went on cipro and doxycycline for 10 days a month on alternating months. My mac tested neg after one year on it. I stayed on that regimen as a preventative measure for three yrs. I then caught pseudomonas in 2016 and got that treated w/tobramycin. That knocked it out after 30 days, plus, as a bonus knocked out the constant cough I had foe 10 yrs. I have been on the toby and cipro on alternating months ever since. I still test neg for mac and pseudo. That doesn't mean that I am cured, it just means there is no detectable amount. Though infection free: I still have bad fatigue that is due to having bronchiectasis.

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@windwalker I was not able to get in at Mayo. My insurance rep. called me and helped me get an appointment with UCLA. Because I coughed up a little blood my infectious Disease doc started me on 500 mg of azithromycin 3 days a week. After a month he wants to start on one of the other 3. Right away I felt very weak and had bad stomach pain. I am going to stay with it like the other brave people I have been reading about in this thread. Last time I was on azithromycin I started feeling better right away and it actually cleared up my gastrointestinal issues. Any recommendations on easing the intestinal pain and diahrea?

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@windwalker

@jweisser Ha! That is one thing I have noticed about most of us here on this site; we LOVE to garden! Be sure to wear gloves and mask when handling potting soil. It has billions of mac per teaspoon in it. I don't even handle it any more period.

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@terri M. I had a day yesterday with my pulmonologist, the nurse called on Thursday to say my sputum which I was never able to get a good specimen, was negative. I told her the fatigue has increased way more than ever before. She talked with the doctor, he said he wanted to see me the next day. He said my bronchiectasis does not appear to be bad enough to cause the fatigue I have. He looked back at old scans, back in 2015 and didn't see any difference in that time. He had the nurse take me walking and checked my oxygen, it dropped to 86 in just a few minutes, he put on oxygen and I walked more, oxygen slow coming back up. Sent me to the hospital for a chest ultra sound thinking it might be blood clot……it wasn't. Now he is going to do a heart valve echo next week. I suggested maybe I should lose some weight and get some exercise, he said that would probably help. Evidently I've had the bronchiectasis for a few years and he was most likely it will not progress anymore. I think he is leaning more toward heart valves instead of the bronchiectasis. I'm really lost since I'm new to the disease/condition. It must have been present in 2015 but no one ever mentioned it. So that's where I am, waiting for the heart scan/with bubbles?????? I still have no more energy. Thanks for listening. Janice

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@jweisser

@terri M. I had a day yesterday with my pulmonologist, the nurse called on Thursday to say my sputum which I was never able to get a good specimen, was negative. I told her the fatigue has increased way more than ever before. She talked with the doctor, he said he wanted to see me the next day. He said my bronchiectasis does not appear to be bad enough to cause the fatigue I have. He looked back at old scans, back in 2015 and didn't see any difference in that time. He had the nurse take me walking and checked my oxygen, it dropped to 86 in just a few minutes, he put on oxygen and I walked more, oxygen slow coming back up. Sent me to the hospital for a chest ultra sound thinking it might be blood clot……it wasn't. Now he is going to do a heart valve echo next week. I suggested maybe I should lose some weight and get some exercise, he said that would probably help. Evidently I've had the bronchiectasis for a few years and he was most likely it will not progress anymore. I think he is leaning more toward heart valves instead of the bronchiectasis. I'm really lost since I'm new to the disease/condition. It must have been present in 2015 but no one ever mentioned it. So that's where I am, waiting for the heart scan/with bubbles?????? I still have no more energy. Thanks for listening. Janice

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@jweisser I went through all of the heart tests, bubble test included. My heart is fine. I guess they have to check all possibilities. I swear, I can't help but wonder if our food isn't what is making us have this gawd-aweful fatigue. There seems to be no explanation for it. My infections are not active, my bronchiectasis isn't that bad…..so I don't understand the constant fatigue.

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@windwalker

@jweisser I went through all of the heart tests, bubble test included. My heart is fine. I guess they have to check all possibilities. I swear, I can't help but wonder if our food isn't what is making us have this gawd-aweful fatigue. There seems to be no explanation for it. My infections are not active, my bronchiectasis isn't that bad…..so I don't understand the constant fatigue.

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@terri M, You might be right about the food we eat. Way too many additives. I've just never had to contend with this kind of fatigue. When I'm sitting quilting or just relaxing I feel fine and think I can get up and do anything I want. Then once I do get up, I can only clean or cook for about 15 minutes until I'm totally wiped out. If nothing shows up on the tests, what in the world do you do? I have very bad body pain and I'm assuming that is just Fibromyalgia which I've had for years but I've never had the total fatigue. It's good to have someone to connect with. Thanks, Jan

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@windwalker

@jweisser I went through all of the heart tests, bubble test included. My heart is fine. I guess they have to check all possibilities. I swear, I can't help but wonder if our food isn't what is making us have this gawd-aweful fatigue. There seems to be no explanation for it. My infections are not active, my bronchiectasis isn't that bad…..so I don't understand the constant fatigue.

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I feel the same way most all of the time, although I rarely eat food that is processed. I try to fight through it, but it feels overwhelming sometimes.

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@jweisser

@terri M, You might be right about the food we eat. Way too many additives. I've just never had to contend with this kind of fatigue. When I'm sitting quilting or just relaxing I feel fine and think I can get up and do anything I want. Then once I do get up, I can only clean or cook for about 15 minutes until I'm totally wiped out. If nothing shows up on the tests, what in the world do you do? I have very bad body pain and I'm assuming that is just Fibromyalgia which I've had for years but I've never had the total fatigue. It's good to have someone to connect with. Thanks, Jan

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@jweisser I've got the same thing here; do anything for 15 mins and then am wiped out also. My husband makes fun of the way I do things. I do a little bit here, and a little bit there, until it gets done. It's all I can do. I used to to keep a super neat house. Now, it is impossible to keep every room straight at the same time. oh well….

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@windwalker

@jweisser I've got the same thing here; do anything for 15 mins and then am wiped out also. My husband makes fun of the way I do things. I do a little bit here, and a little bit there, until it gets done. It's all I can do. I used to to keep a super neat house. Now, it is impossible to keep every room straight at the same time. oh well….

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@windwalker I think I need to quit thinking along the lines of 38 and remember I'm 78. I used to clean my whole house in a morning (small house) and now I can't do it in a week. I'm still frustrated because my doctor doesn't think I should be this tired with as few areas in my lungs. This week should be the heart valve test. We haven't worked our way to my legs yet??? Maybe it's my legs refusing to move. I know it's not funny but if I don't laugh I cry.

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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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I suffered from Shortness of breath, severe fatigue, constant yawning, little energy , severe night sweats , then weight gain then severe hypothyroidism and literally severe low Gamaglobulin levels. In the quest for help and worry; I ended up in a severe depression . When I started coughing up blood and gasping, my internal medicine Dr . Demanded Pulmonologist do a bronchoscopy and Ct. I can’t even tell you how much the antibiotics saved my life. If I don’t get normal rest I will have some days that I am a little Short of breath but I had no choice and for me, I have my life back. I will always be on Levothroxin and Symbicort , IVIG monthly , but the meds were mandatory for me and well worth it in my case.

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@macjane

Many thanks. I heard National Jewish Health in Denver is good. Somewhere I also heard Thomas Jefferson in Philadelphia is quite good as well.

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I actually had my culture and sensitivity double checked with the Jewish Hospital in Denver. I also went to Mayo in Rochester.

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@ling123

MAC usually occurs hand-in-hand with bronchiectasis. We all know that the MAC bacteria exist everywhere. But only certain section of the population gets the infection while the rest are not affected. My understanding is that having bronchiectasis is one of the main causes of having MAC infection because our lungs are weekend by the disease and the damaged bronchial tube walls interferes with smooth travel of the phlegm up and down the tubes. When the phlegm gets trapped in the tiny pockets in the bronchial tube walls, the bacteria in the phlegm can fester. People with healthy lungs are unlikely to be infected for that reason. And for the same reason, we can be re-infected by the same bacteria even after being treated with drugs.

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I wasnt sick with lung diease before this infection thats what i do not understand

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