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, 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

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

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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 missed it 🙁

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@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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@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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@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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@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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@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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@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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@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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@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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