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!

@soflo

@alleycatkate hi Kathy thanks for your response. I too felt as if I was hit by a truck when I received the news and I also do not trust many doctors. That’s why I am so happy I found this site. Can I ask you why you have decided to nebulize and your doctor said not to? I mentioned it to my GP and he said not to do anything yet. I just don’t want to be sitting around if I should be doing something. May I ask you how you supplement? I would love to start taking something natural for my immune system and for my lungs. This is new for me as well and I just have so many questions that is why I get confused and I don’t know what advice to listen to sometimes. Do you think at some point you may want to go to a Mac center like Mayo. Im waiting to see if Terri on this site can recommend doctor closer to me. I wish you great health as well. Please stay in touch I would love to know what you decide on doing moving forward. Hugs Dee

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@nick52 Hi Nicole. Like every other aspect of this lung disease; there are conflicting opinions on how to treat it. The use of saline can be especially helpful for mac/bronchiectasis to inhibit live organisms from growing. My mom had severe COPD and her dr had her move to Arizona from Virginia to help keep her lungs dry. Breathing air is easier when there is less humidity in it with that condition. There are many uncertainties with MAc/nrochiectasis disease. One thing I AM certain of is that Mayo doctors thoroughly investigate everything about your health and custom treat. They do not do cookie-cutter therapy like everyone else. That is what makes them the best.

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@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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@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 Thankyou so much for responding. Wow 7 months. I hope so much that it helps you. I did the 3 treatment for a couple of weeks and then stopped. I’m not sure if that was the right thing to do but I just started feeling ill. So now I’m just trying to learn as much as I can. I’m so happy for all of the information I‘m learning from this group. Thank you for sharing what you do to stay healthy. I’m trying be more active and healthier and as proactive as I can. I have follow-up appointments so we’ll see what they say . I get frightened and a little overwhelmed at times, I’m not gonna lie so the best thing I can do is just move forward and stay healthy and proactive and see what the next few weeks bring me after I see my pulmonologist again. Continued health and success with your treatment please keep posting I’d love to know how you are doing. Hugs Dee

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@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…I will private message you …just starting to check on insurance.

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@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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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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@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…It would be wonderful to journey there (Mayo) together…but if we are not able to because of our HMO's…Please keep in mind we can go on this journey together anyway. It was great talking and I feel really good about us both going forward and fighting this. Be cool (as NY gals can be) and positive….and Call anytime you feel like chatting. Be well. Kate

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@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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@soflo, Hello Dee. I am just glad that you found us. Feel free to check in on Connect when you can, or want to. I would imagine that working while battling this disease takes a lot out of you. Stay strong my friend! Hugs, Terri.

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@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, Thanks for posting this about the mac/bronchiectasis webinar.

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