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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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 20, 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, Thanks for posting this about the mac/bronchiectasis webinar.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 20, 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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@soflo, Hi Dee, You would have to call and ask about your insurance. I have a feeling that since it is an HMO, your insurance company may not let you out of network. You can request of your HMO doctor to call your insurance company and explain that what you have is a rare orphan disease that needs a highly qualified specialist. Also, you may be able to get a CT, chest X-ray, etc. at your HMO's and transfer it down to Mayo. But, if you choose that route; get an ok from the Mayo dr first to see if that is acceptable. Mayo likes to do their own tests for complete accuracy. Being a non-profit, they charge way less than private practice doctors, and can work with you on a payment plan. See what you can work out. Will you please get back to me on what you find out so that I can help others with this issue? Thanks!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 20, 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, Hi Dee. Yes, those are symptoms, especially for bronchiectasis. It sounds like you are not full blown infected yet with colonizing mac, but it most likely is in your future. I think my dr. (Dr. Leventhal) would find you to be the perfect candidate for preventative antibiotics vs the 'Big 3'. He only likes to use preventative measures when infection is not fully involved and save the big guns (Big 3) for serious infections. His theory is that if you use the big guns now, you have nothing to fall back on when and if the infection gets really bad later. From what I have read, antibiotics may not work on a reoccurring infection because the mac gets resistant. Good journals to look up are those by Dr. Askasamit of Mayo Clinic (he is quite active in mac research) and Dr. Joseph Falkinham. The latter is a researcher of mac at Virginia Tech. By reading all that you can about this bacterium; you will better understand what you are dealing with. -Terri

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Jo Ann K | @jkiemen | Jun 20, 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 Make sure you all get both of the pneumonia vaccines too.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 20, 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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@auntnanny Jan, you are most welcome!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 20, 2018
In reply to @cld120 "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..." + (show)
@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

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@rmason Yes! My doctor has def been successful in stalling the downward progression of my lungs deteriorating from bronchiectasis/mac. I watched my lung function graph go steadily down over the last 15 years. I am in a zone of being nearly needing a lung transplant. I am in the severe' range and have 37% lung fuction. I started treatment in 2013 at Mayo. After five yrs of going there; I am feeling and doing better than I had many, many years. Bronchiectasis is a progressive disease, the goal is to slow it down and keep infections from doing further damage.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 20, 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 Dee, I'd be curious as to what your doctors say on your next dr visit.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 20, 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

Jump to this post

@nick52 Hi Nicole. Did you sit in for the 1:00 webinar? If so, how was it?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 21, 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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@soflo and @alleycatkate here is a specialist who treats mac in Vero Beach. I found him through http://www.ntminfo.org. Michele Maholtz, MD – Pulmonary
3725 12th Court, Suite A
Vero Beach, FL 32960
Tel 772-567-0081. There is one more on Vero Beach as well. A woman. I will be back with her info.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 21, 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.

Jump to this post

@soflo and @alleycatkate Here is one more specialist for treating mac near you. Laurie Welton, DO – Infectious Disease, Internal & Travel Medicine
3735 11th Circle, Suite 201
Vero Beach, FL 32960
Tel 772-299-7009

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