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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Brenda R. | @brigby | Jul 4, 2018
In reply to @windwalker "@src3acs, As far as treatment goes, different doctors have different ideas about how to treat mac/bronchiectasis...." + (show)
@windwalker

@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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@lisanova Hi there, I agree with you exercise is key! Like you I’ve always been active, was an athlete through college and coached & taught PE for years. I have started suffering with extreme fatigue, too. Gotta keep fighting!

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nick52 | @nick52 | Jul 4, 2018
In reply to @windwalker "@src3acs, As far as treatment goes, different doctors have different ideas about how to treat mac/bronchiectasis...." + (show)
@windwalker

@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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@lisanova I am glad you’ve joined our chat site! You will find out that many of us had different experience. Today my doctor spoke to me about young children getting bronchiectasis who can live with it without any effect of MAC.  All of a sudden they do a bronco

and find you have a MAC.They happen to do a bronchoscopy and found it. I do not understand why they gave you the big 3 just because you were tired.  Was there a lot of infections in your lungs.  I have never taken the big 3 and when i had some coughing or

felt more tired when exercising I was taking Clear Lungs to clear my lungs and I would be ok! Windwalker is a better expert with antibiotic than me for sure.  If you are on antibiotic you may want to consider taking High dosage of Probiotic to keep your defence

system with good bacteria because the antibiotic will destroy the good one also. Better be safe then sorry!  Nick!

REPLY
nick52 | @nick52 | Jul 5, 2018
In reply to @windwalker "@src3acs, As far as treatment goes, different doctors have different ideas about how to treat mac/bronchiectasis...." + (show)
@windwalker

@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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@alleycatkate & everyone!  KATE as per our phone conversation here is the results! Yesterday was a very good day with good news!  My pulmonary doctor gave me my result of the CTScan. My scan show a very stable and show nothing abnormal to a bronchiectasis lung.

 Very glad ! To me it means whatever I do is working for now.  The doctor explain that the micro nodules on the lungs is the dilatation of the tree buds and when it is infected the nodules are bigger on the scan.  It is not showing any of it!  He says that

he will recommend a CTScan in 2 years (yeah less radiation) but if I feel things aren’t going find to give a call to his secretary and he will take care of it right away . He gave me a prescription of Avelox (antibiotic) in case I start a cold or beginning

of congestion due to a cold I must take it for 7 days to prevent it. He has always done that because of my bronchiectasis is more prone to pneumonia.  I have the best pulmonary doctor I could ask for.  Thanks to him if I am doing so well because he has followed

me since 2009. He is cute lol and a sweetheart! He always take the time to talk and answer all my questions. I know one thing I LOVE THOSE DOCTOR OHIRRA’s PROFESSIONAL PROBIOTICS AND MY MILK THISTLE TO KEEP MY STOMACH Acid free!  I THING IT IS A GOOD PREVENTION,

Have a nice day everyone!  My divine energy is with you all! Nicole

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1 reply
soflo | @soflo | Jul 5, 2018
In reply to @soflo "@alleycatkate Hi Kathy, I would this journey with you for sure!! As I said on my..." + (show)
@soflo

@alleycatkate Hi Kathy, I would this journey with you for sure!! As I said on my post to Terri, I too have to check on my HMO, I guess Mayo would answer that. I’m wondering how do we start this. Do we call Mayo directly? I asked Terri for some guidance on how to begin. Kathy, thankyou so much for sharing your daily routine. I am walking every night and I too will begin adding exercise to it. I’ve started my vitamin D again and will look into the one you mentioned. I said to Terry @alleycatkate how wonderful it would be if we start this trip and met her at Mayo. BTW, yeah my gp said I’m not symptomatic but I’m confused because I have sob, mucus(its not clear at times) and fatigue, so aren’t those symptoms? So I’ll have to discuss with him what he meant by that at my next appt.... I too want to be well and be proactive. As you said many different opinions and approaches are a little overwhelming and this is new to me so in the end I hope I know what I am doing. Please stay in touch and let me know what your next step is. Terri if you read this thank you so much for always responding. Hugs Dee

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@alleycatkate Hey friend, I'm so sorry it's been awhile since I've been on. So nice talking with you on the phone and yes if we can't go to the hospital together we will still go on this journey together. Thanks again. NY gals are cool ;)...I will be checking on which hospital to journey to. I will post when I know something so that others can get some info that may help them and lets talk soon.....xx Dee

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soflo | @soflo | Jul 5, 2018
In reply to @soflo "@alleycatkate Hi" + (show)

@windwalker Hi Terri, Its been awhile. I was having trouble login on but it was because I was doing it from my phone and just got very busy at work. How are you? Hope all is well. I'm waiting on to see if I visit Mayo or the Jewish Hospital in Denver. I will post if and when it works out for me. xx Dee

REPLY
soflo | @soflo | Jul 5, 2018
In reply to @soflo "@alleycatkate Hi Kathy, I would this journey with you for sure!! As I said on my..." + (show)
@soflo

@alleycatkate Hi Kathy, I would this journey with you for sure!! As I said on my post to Terri, I too have to check on my HMO, I guess Mayo would answer that. I’m wondering how do we start this. Do we call Mayo directly? I asked Terri for some guidance on how to begin. Kathy, thankyou so much for sharing your daily routine. I am walking every night and I too will begin adding exercise to it. I’ve started my vitamin D again and will look into the one you mentioned. I said to Terry @alleycatkate how wonderful it would be if we start this trip and met her at Mayo. BTW, yeah my gp said I’m not symptomatic but I’m confused because I have sob, mucus(its not clear at times) and fatigue, so aren’t those symptoms? So I’ll have to discuss with him what he meant by that at my next appt.... I too want to be well and be proactive. As you said many different opinions and approaches are a little overwhelming and this is new to me so in the end I hope I know what I am doing. Please stay in touch and let me know what your next step is. Terri if you read this thank you so much for always responding. Hugs Dee

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@jkiemen Yes I will be getting #13 vaccine soon. Thks.... xx Dee

REPLY
soflo | @soflo | Jul 5, 2018
In reply to @soflo "@windwalker @alleycatkate @unicorn @nick52 @src3acs and some others who have shares with me. Hello all, I'm..." + (show)
@soflo

@windwalker @alleycatkate @unicorn @nick52 @src3acs and some others who have shares with me. Hello all, I'm so sorry for not responding. I have had difficulty posting and replying, I'm not sure what I was doing wrong but Katie showed me so hopefully I can continue to follow and post. You are all amazing and thank you for your wealth of info you have shared. I work so I can't be on as much as many of you but I will check in as much as I can. Thank you again it is much easier knowing we are all in this together. xx hugs Dee

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@windwalker ..Thanks friend. I am glad too and I will stay in touch. xx Dee

REPLY
soflo | @soflo | Jul 5, 2018
In reply to @nick52 "Everyone ! Do not forget the Webinar tomorrow at 1:00. If you haven’t registered yet do..." + (show)
@nick52

Everyone !
Do not forget the Webinar tomorrow at 1:00. If you haven’t registered yet do so first thing in the morning call. 866-253-2957. . It is an INTRODUCTION TO BRONCHIECTASIS AND NTM. Nick

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@nick52 missed it 🙁

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soflo | @soflo | Jul 5, 2018
In reply to @soflo "@windwalker Hi Terri, thanks again. I may look into Dr. Levanthal. I too have a not..." + (show)
@soflo

@windwalker Hi Terri, thanks again. I may look into Dr. Levanthal. I too have a not so good HMO. Do you think that will be a problem for me to see him with an HMO? Maybe I connect with @alleycatkate Kathy and we can go to Mayo together. How nice would it be to meet you there as well. Something like this would be so much easier supporting one another. Terri would I just call mayo directly and ask for an appointment with him. Any direction with this would be greatly appreciated and hopefully Kathy will see this post and we can connect and move forward. Hugs Dee

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@windwalker I'm checking into all of this now. Hope for the best! I will keep you posted.

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alleycatkate | @alleycatkate | Jul 5, 2018
In reply to @soflo "@alleycatkate Hi" + (show)

@windwalker ...Hi Terri...Not sure how I keep missing posts then stumbling over them weeks later?? Not much here...seeing my GP next week and will try to weedle a referral and recommendation to go out of network to see Dr Leventhal....If not, then I will have to wait till January for a new Doc and to change my insurance. Other than that....I am dosing...dosing...dosing. Using Psists antibacterial botanicals, (Bidens and Cryptolepsis), Nano Silver (colloidal silver), Clear Lung, Nebulizing 7%, Nicks Probiotic suggestion and a lot of supplements to boost my immune system. Also think I may have handled the Gerd as per Nick with the Ginger and Milk Thistle right before bed.(the vile bile!!) I am doing well and feeling positive!! Thank you!

How are you doing? Good energy and breathing? I hope your body gets better and better!! Question on the nebulizing...Someone mentioned her Doc said that 4% solution might be more appropriate for her (asymptomatic) rather than 7%. Do you think I should add a little distilled water or just go with the big guns? The 7% doesn't bother me. (sometimes twice, sometimes once a day) It doesn't seem to bring up much. Please tell Dr Leventhal to have no thoughts of retirement, please, until I get to his lotus feet. 🙂

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