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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auntnanny | @auntnanny | Jun 11, 2018
In reply to @soflo "@windwalker Terri or anyone I’ve been reading about Dr. Timothy Akasamit at Mayo in Minnesota. I..." + (show)
@soflo

@windwalker Terri or anyone I’ve been reading about Dr. Timothy Akasamit at Mayo in Minnesota. I live in South Florida can anyone recommend a Mac specialist here at the mayo in Florida? I’ve been on here for hours reading so much good information. I do believe I really need to be checked by a Doctor that specializes in this. Thanks again for any input.

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@windwalker888 Yes, thank you for all your posts and help on this forum

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 11, 2018

@soflo, First, you need to get your doctor to prescribe %7 sodium chloride and a nebulizer. My doctor has me on a bi-monthly treatment plan. One month I am on nebulized tobramycin, this kills pseudomonas and other bad bacterias that aren't specifically tested for. I do this med every other month. The months in between, I take 500 mg of cipro 2x a day for ten days. I also do inhaled symbacort, two puffs in the a.m. and two puffs in the evening. I also do inhaled albuterol or levalbuterol if heart races on albuterol. In a recent post of mine I had stated that my doctor is not treating my mac, but rather is treating the bronchiectasis. Treating that tends to cause the mac to recede. I am in meetings today and tomorrow, so I will have to get back to you on physician referrals. Be sure to be pro-active about asking for the sodium chloride. It is just saline in mist form. I am pretty sure it can't hurt you. So I don't think that should be an issue to get a script for it.

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alleycatkate | @alleycatkate | Jun 11, 2018

@windwalker If you are researching Dr's in S. Florida, I would really love a recommendation. W. Palm...Stuart, anywhere from Melbourne Beach going South if you come across a good one. . I am in Vero Beach and am in need of a new Dr. for MAC Thank you. I am seeing my GP this week to see if she will prescribe the nebulizer and 7% sodium Chloride so I can get going on that.

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3 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 11, 2018
In reply to @soflo "@windwalker Hi Terri, I was responding all over the place earlier sorry about that but now..." + (show)
@soflo

@windwalker Hi Terri, I was responding all over the place earlier sorry about that but now I think I got it lol... responding to your questions I live in South Florida, I do have both mac/bronc and right now I have difficulty breathing at times, I don’t have a cough but I do cough up mucus in the morning, fatigue, brain fog, pains in my rib cage, and over the years most of the symptoms were blamed on menopause. Thank goodness for my cardiologist saw something on my lungs which started this journey. A CT of my lungs shows nodules. So I started the 3 antibiotic treatment for two weeks but as I said I don’t know that my body can handle
It. My doctor will understand when I tell him I should get a nebulizer saline flush? So Terri I am very nervous as to which path to take because I just don’t know. I want to be proactive and I’d like to know naturally what else I can do to keep my lungs healthy from deteriorating even more. This site is amazing and I am so happy to have stumbled upon you all 🙂

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@ling123 Thank you Ling. I appreciate all of your contributions as well. It really does take a village.

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soflo | @soflo | Jun 11, 2018
In reply to @alleycatkate "@windwalker If you are researching Dr's in S. Florida, I would really love a recommendation. W...." + (show)
@alleycatkate

@windwalker If you are researching Dr's in S. Florida, I would really love a recommendation. W. Palm...Stuart, anywhere from Melbourne Beach going South if you come across a good one. . I am in Vero Beach and am in need of a new Dr. for MAC Thank you. I am seeing my GP this week to see if she will prescribe the nebulizer and 7% sodium Chloride so I can get going on that.

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@alleycatkate Hi I live in Palm Beach Gardens. I’m so happy to meet someone close by with something in common. I’m so happy to have found this support group and yes Terri is awesome. 🙂 Dee

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soflo | @soflo | Jun 11, 2018

@windwalker Hey Terri, I went to see my GP today and he supported my decision and stop being the big 3 after two weeks. He thinks we should wait right now for a nebulizer because he feels I’m not symptomatic? And he does not want me to inhale anything at this time and that he wants to discuss it again after I see my pulmonologist. Forgive me because I’m not sure if I am using correct medical terms. I’m going to see my Pulmonologist and my ID in two weeks and will discuss the saline nebulizer and if I should go on a lighter treatment. Thank you for the info about the nodules. I guess that’s good news? I’m confused because I’m not sure what symptoms I need to be on top of. My GP wants to monitor me to see if I start getting worse symptoms and wants to wait and see what my Pulmonologist says after my next visit before he reconsider a lighter treatment. So I guess I will wait to see what the pulmonologist says in two weeks. Thanks Dee

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3 replies
alleycatkate | @alleycatkate | Jun 11, 2018
In reply to @alleycatkate "@windwalker If you are researching Dr's in S. Florida, I would really love a recommendation. W...." + (show)
@alleycatkate

@windwalker If you are researching Dr's in S. Florida, I would really love a recommendation. W. Palm...Stuart, anywhere from Melbourne Beach going South if you come across a good one. . I am in Vero Beach and am in need of a new Dr. for MAC Thank you. I am seeing my GP this week to see if she will prescribe the nebulizer and 7% sodium Chloride so I can get going on that.

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@soflo ...Dee...I have been watching your current posts. I was recently diagnosed ...maybe a couple weeks ago. It is initially very confusing. I am just beginning to get a bit of a handle on this disease, thanks to this group. You are right...it feels good to have company. I am currently asymptomatic but am in need of a Dr as my present one just delivered the news on the phone and said he would see me next April. I hung up wondering what truck just ran me over. I think I may be very fortunate but not sure how long it can stay asymptomatic. I am glad you stopped your cocktail and see that you are also asymptomatic. On my initial apt with my pulmonoglogist, I asked about a nebulizer as I had seen so much on this post. He said no...no moisture. Frankly...I feel that you need to read as much as you can and make your own decisions. I will be nebulizing immediately...just as soon as I get over this darn cold and get out for a prescription from my GP. I have a trust issue with a lot of Dr's...and I believe it is warranted. I also usually just treat with herbs and natural remedies so the idea of that cocktail is appalling. So glad that you are in my neck of the woods...I am hoping to find a compassionate and good Dr. nearby. I wish you good health and good luck. Thanks for the hello...Kathy...

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Jane S. Brown | @macjane | Jun 11, 2018
In reply to @alleycatkate "@windwalker If you are researching Dr's in S. Florida, I would really love a recommendation. W...." + (show)
@alleycatkate

@windwalker If you are researching Dr's in S. Florida, I would really love a recommendation. W. Palm...Stuart, anywhere from Melbourne Beach going South if you come across a good one. . I am in Vero Beach and am in need of a new Dr. for MAC Thank you. I am seeing my GP this week to see if she will prescribe the nebulizer and 7% sodium Chloride so I can get going on that.

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Any support groups in SE Michigan? Thanks

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 11, 2018
In reply to @soflo "@windwalker Hey Terri, I went to see my GP today and he supported my decision and..." + (show)
@soflo

@windwalker Hey Terri, I went to see my GP today and he supported my decision and stop being the big 3 after two weeks. He thinks we should wait right now for a nebulizer because he feels I’m not symptomatic? And he does not want me to inhale anything at this time and that he wants to discuss it again after I see my pulmonologist. Forgive me because I’m not sure if I am using correct medical terms. I’m going to see my Pulmonologist and my ID in two weeks and will discuss the saline nebulizer and if I should go on a lighter treatment. Thank you for the info about the nodules. I guess that’s good news? I’m confused because I’m not sure what symptoms I need to be on top of. My GP wants to monitor me to see if I start getting worse symptoms and wants to wait and see what my Pulmonologist says after my next visit before he reconsider a lighter treatment. So I guess I will wait to see what the pulmonologist says in two weeks. Thanks Dee

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@soflo Please read this all of the way through. NIH is a super reliable source for info.This may help you with your treatment decision. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4749270/ click on this link to open.

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soflo | @soflo | Jun 13, 2018

@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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