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

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

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@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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@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 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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@jkiemen

@alleycatkate I think we have all been there, being told we have a life changing health issue then being told not to do anything. How can that be. We of course want to do something to help ourselves. Personally, I wish that I started the treatment earlier before the bacteria increased. I tried antioxidants the Bidens and Corelepsis that one of our members used but I did end up starting treatment. I got a second opinion and got the impression they may have continued to wait a bit. But nonetheless, I started treatment with the "Big 3" and I think stopping early could lead to resistance, so I would like to stick it out as long as I can. One MD told me the best thing for your immune system is to make sure your Vitamin D level is normal and supplement that. You should ask to have your Immune system tested, blood test.

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@jkiemen You know, @irene5 said the same thing; that she wished she had started the Big 3 sooner. I am wondering if you & Irene had started out sooner instead on the regimen I am doing now with alternating antibiotics; if that might have been a good thing? I am not trying to prove a negative; only that starting treatment earlier instead of waiting doesn't neccessarily have to mean treatment with the Big 3. (Posted for the benefit of the newly diagnosed mainly)

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@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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@windwalker …The time, energy and caring you put into all of us is actually sort of mind boggling…and You probably know more than most Drs on this disease! I am thinking that if I do not have an issue with changing insurance plans that I will be heading for Leventhal come January. It makes the most sense to me. Dr Michele Mayholtz, I know her ..could be the fall back. Thank you, Terri. Kate

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@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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@alleycatkate You are welcome Kate. Thank you for the kudos. I have been researching this disease since 2005 in search of answers. My resource base has gotten a lot broader as doctors and researchers have been more aware of the growing prevelence of mac. Perhaps you can call Mayo's billing dept and ask them which insurance companies they have seen cover Mayo visits. Have you tried asking your insurance company for a waive in their policy if your physician would call in expressing that you have a rare orphan disease that requires a very good specialist? Or better yet, have your doctor call the insurance company and ask for a waiver.

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