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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alleycatkate | @alleycatkate | 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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@soflo...Will call this weekend....so much to talk about! Haha...be cool...be well. xxoo Kate

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 5, 2018
In reply to @soflo "@alleycatkate Hi" + (show)

@alleycatkate I can explain (sort of) the issue with missing posts. This is a known problem that recently popped up on Connect because the community has grown as has the volume of posts. Our email servers are over-taxed and we are currently changing our system to be more robust. The IT team promises that the new email server will be in place before the end of the month.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 6, 2018
In reply to @soflo "@alleycatkate Hi" + (show)

@alleycatkate , Hi. I got a chuckle from your last sentence. I have actually had that on my mind to tell Dr. Leventhal that he can NEVER retire! But, if he must, then he needs to train someone under him, so that his way of treating can go on. I have been absent somewhat from this forum due to having a molar pulled and TMJ pain. And now, as of last night and today; having SVT (heart arrhythmia) issues. On the bright side, I am breathing clear, no coughs, Oxygen levels are high; 95-97. But am more short of breath than usual. Thank you for asking about me. One of these days, all of us Florida & S.C. members should have a physical meet-up. Wouldn't that be fun?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 6, 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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@src3acs Hi there. I was just reading through some posts and came across tjis older one of yours. I am sorry I didn't get back to your question of who to see on the D.C. area. Was traveling that day and had a dental emergency. NIH and John Hopkins are two notable healthcare institutions. You have probably already found a doctor by now. How are things going for you now?

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alleycatkate | @alleycatkate | Jul 7, 2018
In reply to @soflo "@alleycatkate Hi" + (show)

@windwalker ...That would be great fun!! Is the SVT from the stress of your dental work? I wonder if we don't all need to sign up for mediation, yoga and a wonderful yearly vacation for our well being. I hope you feel better in short order, Terri.

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nick52 | @nick52 | Jul 7, 2018
In reply to @soflo "@alleycatkate Hi" + (show)

@alleycatkate I agree with you  that everyone should take meditation to calm the stress and keep our body in balance and any other exercices.  I’ve been doing all of these since 1986 after my big TMJ surgery!  It was so helpful to reduce the pain. Nick

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lisanova | @lisanova | Jul 8, 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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@nick52 Thanks for the info. I'll definitely look into high dose probiotic. I don't think they gave me big 3 because I was tired. I probably didn't put enough detail into previous explanation. When they did scan they found "innumerable (well over 100) tiny nodules. They were 1-4 mm and scattered throughout both lungs. They then did bronch. and thought they were caused by the MAC. My pulmonologist sent me to ID doc. and he thought I would be able to tolerate meds., so suggested I do the big 3. I did go to Mayo, just to get 2nd opinion and they agreed that was best route. I just got the results from my 6+ month scan and my pulm. said the nodules have decreased, so it appears the meds are working. I have not seen the written report yet, and am very curious about details (what number of nodules are now there?). I just did a spatum culture as well--waiting for results. My pulmonologist said it may come back neg. at some point and nodules would still show from scarring??? He has not worked much with this specific disease, so after reading a lot from this site, I am definitely going to go back to Mayo Rochester--I'm only about an hour and a half away. One thing I find so odd about this is why does it primarily effect women? Does anyone have any info. on this. Thanks Again!

REPLY
irene5 Irene Estes | @irene5 | Jul 8, 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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You are correct. It does seem to be gender specific for women although there are plenty of men with MAC. Men seem to have more of the cavitary type, whereas many women have the nodular variety. If you google MAC and women there are some good articles about it. I’d like to be able to google a cure!

REPLY
tdrell | @tdrell | Jul 8, 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!

Jump to this post

@lisanova...did the CAT scan show bronchiectasis? How fortunate to live so close to Mayo Clinic! Tdrell

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