Extreme fatigue

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

You are right in essence. I don’t know of a single person who has been infected who got rid of it for the rest of their lives. I beg someone to please prove me wrong on this…it can go away for awhile…meaning you can receive negative sputum cultures for a few years but everyone I have spoken with has been reinfected later. How I wish I were wrong! If anyone knows of anyone who has received treatment and went on to live 20 more years without a reoccurrence please chime in.

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@hydrang3a My dr said he has seen cases go away permanently who were on my antibiotic regimen for at least 10 yrs, and they must not have bronchiectasis, and there is only a 30% chance that those patients won't see it return. Prognosis for those who have minimally damaged lungs. After coming off the BIG 3, bronchiectasis patients need to be on small doses of preventative antibiotics for life. Bronchiectasis damages lung tissue and leaves the lungs suseptible to bacterial infections. My dr always says "I am not treating your mac, I am treating your bronchiectasis."

Liked by ling123

@hydrang3a

You are right in essence. I don’t know of a single person who has been infected who got rid of it for the rest of their lives. I beg someone to please prove me wrong on this…it can go away for awhile…meaning you can receive negative sputum cultures for a few years but everyone I have spoken with has been reinfected later. How I wish I were wrong! If anyone knows of anyone who has received treatment and went on to live 20 more years without a reoccurrence please chime in.

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@hydrang3a My take on this issue is that, although the bacterial is prevalent and pretty much everybody can have exposure to it, not everybody will be infected. The reason is that those of us who have been infected are invariably suffering from some kind of underlying health problem that makes us susceptible to this particular infection and most of these underlying health issues are either very tough to cure or simply incurable, whereas the healthy people will not be affected by the exposure. So even if we are able to get rid of the infection through treatment, our underlying diseases will very likely to cause us to be re-infected and we end up being put in this vicious cycle. It sounds hopeless and depressing. But it doesn't have to be. We just have to be very diligent in avoiding the exposure to the bacteria while trying to stay on top of our existing health problems.

Liked by lorifilipek

@ling123 Your take is spot on! Irene

Liked by ling123

@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?

@ling123

@hydrang3a My take on this issue is that, although the bacterial is prevalent and pretty much everybody can have exposure to it, not everybody will be infected. The reason is that those of us who have been infected are invariably suffering from some kind of underlying health problem that makes us susceptible to this particular infection and most of these underlying health issues are either very tough to cure or simply incurable, whereas the healthy people will not be affected by the exposure. So even if we are able to get rid of the infection through treatment, our underlying diseases will very likely to cause us to be re-infected and we end up being put in this vicious cycle. It sounds hopeless and depressing. But it doesn't have to be. We just have to be very diligent in avoiding the exposure to the bacteria while trying to stay on top of our existing health problems.

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@hydrang3a

@hydrang3a I totally agree. If I had know about MAC (I have bronchiecstasis) I would not have been messing around digging up dirt and messing around with potting soil (research has proved that MAC is definitely found in potting soil).

@extratiredalway, Noooooo, I don't want to hear that about potting soil. That's my favorite thing to do, repot house plants and flowers in the summer. I'm still counting on mine not being that bad since the pulmonologist said I didn't have a lot of the bronchiectasis spots, but if that's the case why am I so very tired? Is it the suggestion after reading about what this really amounts to? Janice

@jweisser

@terri M, thanks for the information. I'm struggling to figure out all of the symptoms and how it's going. This was my first meeting with the pulmonologist, he spent at least 45 minutes with me checking my background etc. He has also ordered a heart valve echo to see if that is OK. It just takes a long time to get all of the tests completed. I'm trying to get some exercise in thinking the fatigue might be that I'm out of shape. It's very hard to do much walking when just plain old house work wears me out, even just getting showered and dress has me puffing. The doctor showed me my lung scan and said the number of bronchiectasis things, whatever they are, was not bad so I'm wondering if there is enough there to make me this fatigued. He had me take a 10 day series of Prednisone and an antibiotic which I've taken and been done with for a couple of weeks now. My PA had me use an inhaler which seemed to help sometimes but didn't make a big difference. I'm leaning toward just being fat and lazy, and out of shape. Although I do know there is something in my lungs, I just don't know how much it's contributing to my fatigue. Thanks for your help, I'm reading as many posts as I can to try to understand what is going on with me. Janice

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I question the same types of things as you do as the fatigue increases during my work week to the point of exhaustion on the weekends. It’s really hard to do any exercise at all when working but do try to push myself a little. It’s nice to hear others’ experiences as my pulmonologist doesn’t say much about my fatigue except to do the respiratory program twice a day instead of once a day.

@jweisser

@extratiredalway, Noooooo, I don't want to hear that about potting soil. That's my favorite thing to do, repot house plants and flowers in the summer. I'm still counting on mine not being that bad since the pulmonologist said I didn't have a lot of the bronchiectasis spots, but if that's the case why am I so very tired? Is it the suggestion after reading about what this really amounts to? Janice

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@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.

Liked by lorifilipek

@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.

@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.

@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?

@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

@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.

@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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