1. < MAC & Bronchiectasis

extreme constant fatigue

Posted by lilianna @lilianna, Sep 7, 2024

Has anybody experienced constant fatigue? I have bronchiectasis and have been treated for MAC. I used to have days of fatigue but recently it is every day and constant. I wake up, do the airway clearance, and then it comes again. I drag through the day, force myself to do things and live but I really have to lie down multiple times a day. My family doctor checked blood (fine), vit d3 (70 so OK, before was 40), magnesium (fine), and vit B12- low -started taking 1000mg every day. I eat healthy, take vitamins but Istill feel so miserable and unable or willing to do anything. My eyes are closing as soon as I sit down. I know from this forum it can be BE or from the meds (azythromycin, ethambutol and clofazimine the last 16 months). I used to have better and worse days before but since the time I had a viral infection in July it got so much worse. If you fell or felt the same what did you do? Thank you for your thoughts.

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reneemc | @reneemc | Dec 14, 2024

Yes, my experience is the same. I’ve been on antibiotics 20 months and can hardly function

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bayarea58 | @bayarea58 | Dec 14, 2024
In reply to @pled "I had a MAC infection in 2020. My pulmonologist and I decided to take a watch..." + (show)
@pled

I had a MAC infection in 2020. My pulmonologist and I decided to take a watch and wait approach, so I did not take meds. My symptoms were much as you described. I was losing weight, losing hair, coughing day and night (and pulling muscles) but not bringing anything up, dark circles under my eyes, no energy. I have relied on acupuncture for various issues in the past, so I decided t give it a go. My acupuncturist took one look at me and said, "You"re depleted." I thought that was the perfect word for how I felt. Acupuncture certainly did not cure my infection, but I did feel like I had more strength, like my body was giving me something to work with, like maybe things were starting to turn around. I'm not making any recommendations, just offering my own experience.

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@pled it sounds like your MAC infection is in the past. Did you spontaneously clear it or eventually treat it with the antibiotics?

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1 reply
blm1007blm1007 | @blm1007blm1007 | Dec 14, 2024

To all with extreme fatigue and other skin symptoms.
RE: Fatigue
Something to also consider. I mentioned in another post/thread my experience on antibiotics.....however....it was due to 24/7 IV liquid antibiotics needed for Legionella and Mycoplasma pneumonia at the same time. I developed extreme fatigue, and I mean extreme, after a period of time after having been off the antibiotics...... I developed Candida, fungal infection, affecting much of my entire system. I believe with not knowing, at that time, how antibiotics affect one and especially not knowing to take probiotics or staying away from high carbohydrates and sugar....I was, gradually, without knowing it...building within me, thrush and Candida. Some of us may have something started like that before even starting the antibiotics for BE/MAC due to other reasons and meds.
So, just food for thought about the fatigue via explaining my experience. There are probably multiple reasons for extreme fatigue but considering everything we can't rule out what we do know antibiotics can cause in our system. Our immune system can be compromised for different reasons, and meds, and cause us multiple problems, as we know

RE: BE/MAC
I have noticed some good changes in my skin, less dryness and flaky skin and I am sleeping better. I believe it may have to do with a lower bacteria load and or less inflammation in the system. Much, for me has gotten better and I think it has to do with both, lower bacteria load, less inflammation. Don't know for sure but those are two contributors to our BE/MAC problem.

I have not taken antibiotics for my BE/MAI and somewhat have not because of my previous experience with Candida throughout my system after the IV liquid antibiotics. I also am wanting to give myself a fair chance of seeing if all I am doing can help me without the antibiotics. I have had a low level MAI for the most part and no cavity. I am also very fortunate, I do not have any other immune system problem at this time and all blood tests and tests for other things come back unremarkable. Wait, not my cholesterol after Thanksgiving and the helpings of pumpkin ice cream. 🤣
Hope this helps in things to be aware of for us.
Barbara

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pled | @pled | Dec 15, 2024
In reply to @bayarea58 "@pled it sounds like your MAC infection is in the past. Did you spontaneously clear it..." + (show)
@bayarea58

@pled it sounds like your MAC infection is in the past. Did you spontaneously clear it or eventually treat it with the antibiotics?

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bay area58, I did not take antibiotics. I rely on nebulizing and mucinex twice daily, and a vibrating vest and postural drainage every day. It is time consuming, but I feel like I am living a pretty good life for a 76 year old. Travel a bit, take care of my chores without outside help, pursue friendships and hobbies, and get a couple of good walks with the dog each day. I"m not sure what else I could ask for.

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circleup | @circleup | Jan 30 9:14am
In reply to @kwi "I’ve had two periods of fatigue similar to yours. The first one was a year and..." + (show)
@kwi

I’ve had two periods of fatigue similar to yours. The first one was a year and a half ago. For a couple of months I was constantly laying on the couch, often sleeping. I’d cook, go lay down. Load the dishwasher, go lay down, sleeping a lot. After a couple months, I realized that it probably the medications I was on for a heart arrhythmia. I saw my cardiologist and he switched me from metoprolol to a different med. Helped so much. These past few months I’ve been experiencing being so very tired. What I didn’t get done in the morning, didn’t get done until after a two hour nap in the afternoon, if then. I hadn’t had a change in anything and finally dropped off a sputum sample for the pulmonologist. My results came back with heavy growth of Haemophilus influenzae. So he has put me on a 10 day antibiotic (not azithromycin).
Otherwise, I’m not receiving treatment my bronchiectasis or mac other than nebulizing 7% saline and doing airway clearance.

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MAI tx for the past six months, yes my fatigue is the same as yours, but the doctors dont seem to think its related. Went to the cardiologist, got a clean bill of health. I am on the verge of quitting my desk job! After work i go home and lay down, but not able to sleep. Household chores take me days to complete, lol. I just dont care anymore. DOnt know if the fatigue is related to the MAI or the drug regiment. No one seems to care. Thinking of getting a second opinion.

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circleup | @circleup | Jan 30 9:18am
In reply to @lilianna "For me antibiotics helped with cough. I stopped the nonstop coughing so bad that I was..." + (show)
@lilianna

For me antibiotics helped with cough. I stopped the nonstop coughing so bad that I was gagging. You will find relief when you start .I wish you the best. Stay strong waiting for the treatment. When I started the treatment my ID doctor made me start all three meds at the same time. 10 days later I had an adverse reaction and ended up in hospital for four days. When I restarted meds I went one antibiotic at a time with a week, 10 days space and it was the right way to adjust. I hope your id doctor is more couscous than mine was.

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i dont react well to drugs. My doctor was mad at me for spacing the meds out like i did. If i had a reaction how would i know which drug i was reacting to? Discovered i cant take the Ethambucol it hurt my optic nerve. The rifampin gives me chest pain and raises my BP. Now i only take the two meds with the help of my heart doctor trying to control my chest pain and BP issues.

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