Extreme fatigue with MAC

@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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@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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@src3acs....agree with you totally Re this group....amazing...supportive...knowledgeable ...empathetic...,the list goes on. When you have time ( and energy) try to review from the start. When you do, you will come across links to various taped workshops given in the past Re NTM and treatment etc.
Also do you know about the site “NTMinfo.org”....interesting. With lots of links.
Questions /comments that I have after reading your messages and that of others
- have you had sputum cultures done...how many and their results?
-have you ever had a sleep study done to see if you have sleep apnea?
- are blood studies normal...do you have anemia?
- you mentioned cardiology... have you had a stress test and nuclear scan.,,,I ask cause 3 years ago I had extreme fatigue....BUT my EKG AND Stress test were normal.....my sharp cardiologist ordered

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@tdrell ....hi there and thank you for your response. Lets see where to start. I had an echocardiogram on my heart almost a year ago. Did a sleep test over the summer...all normal. Just has blood work done 2 months ago all normal expect my Vit. D is low again and I do take supplements every day. No sputum cultures because a biopsy, then wedge resection, and bronchoscope all showed positive for MAC. Yearly CT show the MAC and bronchiectasis. Where the MAC came from I do not know. Starting at age 17 I had a spontaneous pneumothorax......again in my early 20's and I was a smoker at the time. Had surgery on both my lungs by the time I was 21. Had a few bouts with pleurisy, in my 20's and 30's and had pneumonia 3x in my 30's. Quit smoking 16+ years ago and I'm in my early 50's now. Spent some time in hot tubs in my 20's and I've been to Florida several times. Like you said there is the shower head and soil. Yes, it's very green where I live but I have never had allergies. Not to say I can't get them now. I have had shortness of breath for a year or so now and I use ProAir Respiclick when needed......the fatigue would come and go.....now it's here more often. By 2pm yesterday I wanted to crawl under my desk and take a nap. Today not as tired. I over sleep just about every morning! To be honest...sometimes I am just too tired to take a shower. Going for a pulmonology follow-up the 12th. Maybe I need a new pulm function test to see if there are any changes.

I will say I am happy to hear you caught the blockage in your heart before there was any damage.

I am so grateful for the responses I am getting from everyone. I will take a look around and see what other information I can find. Thank you!

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@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!

Jump to this post

@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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@src3acs, Hi there, and welcome to our group. YES! MAC & Bronchiectasis definitely cause extreme fatigue. I combat it with .05 mg of Adderall, (I have ADD) I am prescribed 20 mg, but take only a quarter of the dose and I sometimes use ginsing with royal jelly (bee pollen) that comes in the little bottles. That gives you stamina to go all day without feeling hyped up. The days that I don't use these are spent on the couch all day. My spirit is rearing to go, but the body says "absolutely not". The first important thing I can tell you is; it is crucial that you see a doctor that knows a great deal about this disease. Most doctors are 'old school' and follow the same course of treatment. You also need to see a good Infectious Disease doctor. I was diagnosed in 2005 with MAC. (I had bronchiectasis also, but was never told that. It came up in old dr. reports that went back to 2001.) The doctor wanted me on the BIG 3 antibiotics, but I opted not to. I made that decision after getting a second and third opinion. Plus, I did my homework and found that the drugs can be toxic and hard on your other organs and only had 50% chance of working and that despite treatment; the mac comes back later eventually in many people. After refusing the usual treatment; I was put on Azithromycin and Ciprofloxacin for several months. That knocked the mac down to where I was no longer sick. I should have been routinely tested since 2005, but due to my ignorance and doctors not being on the ball, I was not tested again until 2013. During that eight years I was not treated or tested; my lung function slowly deteriorated. I believe that was due to bronchiectasis. I went to the Mayo Clinic in Jacksonville, Fl. where my doctor there had a different way to treat MAC. He put me on monthly doses of alternating antibiotics. I would do 10 days of ciprofloxacin one month and then 10 days on Doxycycline. I did that cycle for three years and I saw improvement in S.O.B. and no coughing. Today, I have good days and low energy days. I do not cough. My rate of decline is very slow, so am hoping we are slowing down the progression of bronchiectasis. Because this is getting long, I will start a new reply to you about getting treatment.

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@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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