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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soflo | @soflo | Jun 10, 2018

@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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9 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2018
In reply to @tdrell "@windwalker ...terri...what a terrible disapointment. I will think of you tomorrow and send the white light..." + (show)
@tdrell

@windwalker ...terri...what a terrible disapointment.
I will think of you tomorrow and send the white light that you make it!!! Terri ...tdrell

Jump to this post

@franthony, I will be in Mn by 4:00 staying at the Mayo Hilton. Are you near there?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2018
In reply to @soflo "@windwalker Hi Terri, I was responding all over the place earlier sorry about that but now..." + (show)
@soflo

@windwalker Hi Terri, I was responding all over the place earlier sorry about that but now I think I got it lol... responding to your questions I live in South Florida, I do have both mac/bronc and right now I have difficulty breathing at times, I don’t have a cough but I do cough up mucus in the morning, fatigue, brain fog, pains in my rib cage, and over the years most of the symptoms were blamed on menopause. Thank goodness for my cardiologist saw something on my lungs which started this journey. A CT of my lungs shows nodules. So I started the 3 antibiotic treatment for two weeks but as I said I don’t know that my body can handle
It. My doctor will understand when I tell him I should get a nebulizer saline flush? So Terri I am very nervous as to which path to take because I just don’t know. I want to be proactive and I’d like to know naturally what else I can do to keep my lungs healthy from deteriorating even more. This site is amazing and I am so happy to have stumbled upon you all 🙂

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@soflo, I am so glad that you found us too. This is a great commumity here. Good job, I am now getting your messages direct, but others can still see and read your posts. Which is a good thing, as other people may jump in with their thoughts. Nodules are not the same as cavities. Cavities are actual holes in the spongy lung tissue. Nodules are sort of like tumors. Those can come and go, they can get larger and smaller. I have 2 small ones that have remained unchanged for 20 yrs. They are not colonies, not sure what is inside of them. I will have to look into that. I was diagnosed in 2005 with mac and I was sick as a dog. The first dr wanted me on the 'Big 3', my gut feeling was not to do it. I got a second and third opinion. The two last drs said they wouldn't do it if it were them with mac. I chose not to because of the toxicity of those, plus, I was told it comes back 50% of the time. I didn't do any treatment at all which was a mistake (but I didn't know any better then). Consequently, my lungs did deteriorate further and I lost a lot of lung tissue. I feel like had I been treated like I have in the past five yrs and done nebulized saline; I would be in a whole lot better shape today. I will continue this conversation in a new text because this one is getting long. My next text is about my treatment plan that has been working...

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 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.

Jump to this post

@soflo, I swear by my pulmonologist at the Mayo in Jacksonville. His name is Dr. Leventhal. If you need help finding one closer to home; let me know.

REPLY
Jennifer | @megan123 | Jun 10, 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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Windwalker...the only thing that worries me is that the Mayo Clinic doesn't agree that it works, also mentioning the problems that it can cause...so much conflicting information....I bought it but haven't used it because of Mayo Clinic information

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2018
In reply to @soflo "@windwalker Hi Terri, I was responding all over the place earlier sorry about that but now..." + (show)
@soflo

@windwalker Hi Terri, I was responding all over the place earlier sorry about that but now I think I got it lol... responding to your questions I live in South Florida, I do have both mac/bronc and right now I have difficulty breathing at times, I don’t have a cough but I do cough up mucus in the morning, fatigue, brain fog, pains in my rib cage, and over the years most of the symptoms were blamed on menopause. Thank goodness for my cardiologist saw something on my lungs which started this journey. A CT of my lungs shows nodules. So I started the 3 antibiotic treatment for two weeks but as I said I don’t know that my body can handle
It. My doctor will understand when I tell him I should get a nebulizer saline flush? So Terri I am very nervous as to which path to take because I just don’t know. I want to be proactive and I’d like to know naturally what else I can do to keep my lungs healthy from deteriorating even more. This site is amazing and I am so happy to have stumbled upon you all 🙂

Jump to this post

@soflo, The saline is not a flush that I am talking about. Although there is a saline 'flush' procedure that involves a bronchioscope. It is kind of invasive; it requires a twilight anesthesia. I think it is called a bronchial wash. The saline treatment I am speaking of is a prescription of 7% sodium chloride. It comes in individual vials that you put into a nebulizer and inhale the mist. It irritates your lungs (it is upposed to) and causes you to cough up phlegm. It also thins the phlegm so that it comes up easier. Thin phlegm prevents mucous plugs and mac and others from colonizing our lungs. You will have to be proactive in your treatment because many drs don't know much about treating this disease. You may need to ask or demand some things when it comes to your treatment. Doing the saline nebs are just good lung hygiene and should be done by all of us with mac and/or bronchiectasis.

REPLY
franthony | @franthony | Jun 10, 2018
In reply to @tdrell "@windwalker ...terri...what a terrible disapointment. I will think of you tomorrow and send the white light..." + (show)
@tdrell

@windwalker ...terri...what a terrible disapointment.
I will think of you tomorrow and send the white light that you make it!!! Terri ...tdrell

Jump to this post

I live in St. Paul.

REPLY
soflo | @soflo | Jun 10, 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.

Jump to this post

@windwalker Terri thankyou you for so much great info. Please let me know you think is the difference between nodules and the colonies. Which nebulizer should I get? I would like to start it right away. Jacksonville is about three hours away but I would travel if I had to but if you can, please let me know of a pulmonologist who specializes In MAC closer to me. I live in palm beach county. I am close to a Mayo and Cleveland clinic. I just hope I haven’t done more harm than good by stopping the big 3 but I’m so afraid of what they would do to my body. Anything else you recommend to begin other than the saline inhaler? Ugh I just dont know what to listen to anymore. Thanks again.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 11, 2018
In reply to @soflo "@windwalker Hi Terri, I was responding all over the place earlier sorry about that but now..." + (show)
@soflo

@windwalker Hi Terri, I was responding all over the place earlier sorry about that but now I think I got it lol... responding to your questions I live in South Florida, I do have both mac/bronc and right now I have difficulty breathing at times, I don’t have a cough but I do cough up mucus in the morning, fatigue, brain fog, pains in my rib cage, and over the years most of the symptoms were blamed on menopause. Thank goodness for my cardiologist saw something on my lungs which started this journey. A CT of my lungs shows nodules. So I started the 3 antibiotic treatment for two weeks but as I said I don’t know that my body can handle
It. My doctor will understand when I tell him I should get a nebulizer saline flush? So Terri I am very nervous as to which path to take because I just don’t know. I want to be proactive and I’d like to know naturally what else I can do to keep my lungs healthy from deteriorating even more. This site is amazing and I am so happy to have stumbled upon you all 🙂

Jump to this post

@soflo, Good morning. I am at a medical conference of sorts today at the Mayo in Rochester., and I was talking to someone about 'Nodules'. I was told that just about everybody has nodules and that there is usually nothing to them.

REPLY
ling123 | @ling123 | Jun 11, 2018
In reply to @soflo "@windwalker Hi Terri, I was responding all over the place earlier sorry about that but now..." + (show)
@soflo

@windwalker Hi Terri, I was responding all over the place earlier sorry about that but now I think I got it lol... responding to your questions I live in South Florida, I do have both mac/bronc and right now I have difficulty breathing at times, I don’t have a cough but I do cough up mucus in the morning, fatigue, brain fog, pains in my rib cage, and over the years most of the symptoms were blamed on menopause. Thank goodness for my cardiologist saw something on my lungs which started this journey. A CT of my lungs shows nodules. So I started the 3 antibiotic treatment for two weeks but as I said I don’t know that my body can handle
It. My doctor will understand when I tell him I should get a nebulizer saline flush? So Terri I am very nervous as to which path to take because I just don’t know. I want to be proactive and I’d like to know naturally what else I can do to keep my lungs healthy from deteriorating even more. This site is amazing and I am so happy to have stumbled upon you all 🙂

Jump to this post

@windwalker So glad you have a chance to ask questions and share the expert answers with us. You are the perfect person for this job. So appreciate what you do.

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