1. < MAC & Bronchiectasis

New Diagnosis of MAC/MAI & I'm scared

Posted by sueinoregon @sueinoregon, Sep 10, 2018

Hi, I am new to this site. I just got the results of my broncoscopy a week ago. First I was told I had Staph Aureus in my lungs & was put on Levaquin X 10 days. OK, Now she tells me I had MAI & I think the other one is MAC. Anyway, My pulmonologist said we are waiting for the sensitivity test to see if the bacteria in my sputum are sensitive to the antibiotics....or not....since now some strains are resistant. My name is Sue from Oregon and I am 61 years old with Sjogren's Syndrome, Rheumatoid Arthritis, Bronchiectasis, and now THIS. My RA & bronchiectasis are extensive with a lot of coughing and I am on a biologic immunosuppressive drug, infusion, for the RA. I read several posts at this site, looked up the side effects of the 3 meds my pulmonologist said she will put me on, scheduled an eye and hearing exam. This is scarey!!!! I'm already weary of my life having been turned upsidown in the last 4 years with my health struggles. (On SS disability now) I talk with a clinical psychologist every other week & she is helpful. Is it really helpful to talk about it online? Or does it just make one ruminate about it all the more? I'm not sure which it is. Please let me know if it has helped you cope, or not. Thanks.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

irene5 Irene Estes | @irene5 | May 5, 2020
In reply to @windwalker "Irene, my thumbs are getting totally ruined from using them to text on my phone. I..." + (show)
@windwalker

Irene, my thumbs are getting totally ruined from using them to text on my phone. I am trying to not get on my phone socially as much as I had been.

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Terri, I believe that. I absolutely positively can not text with my thumbs. One of my Chinese kids has no fingers on either hand - just one partial thumb with a titanium implant. I’m going to have to watch him text one of these days when he can come visit after covid19. On another note I’m starting the Arikayce soon. They called me yesterday because I had been on “hold” since February because of the virus.🤞🏻🙏🏻 Irene

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america | @america | May 5, 2020
In reply to @windwalker "I went off of all antibiotics 2 months ago. I took this initiative myself. I have..." + (show)
@windwalker

I went off of all antibiotics 2 months ago. I took this initiative myself. I have been on a bi-monthly regimen of ciprofloaxacin since 2013. I was mac free by 2014. I remained on the cipro as a deterrent all these yrs since with no problems. I had noticed that in recent times; it was giving me bad leg and foot cramps. Two months ago when I started on my usual cycle, the cramps were super severe, so I stopped taking it. It used to be that when I finished a med, I could go about 40 days with clear lungs and then they would start getting gummy again and knew it was time to go back on one. So far, my lungs have stayed clear for two months now. I am thinking it could be due to me isolating from the covid-19 and I am not exposing myself to too many strange germs. I do not recommend anybody do what I did. I do have an upcoming appt at Mayo in June and will see what my new dr has to say. Stay safe everyone!

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Hi Terri! Wow I think that’s amazing! I was happy when the dr told me to stop the Toby. But you did this and I think that is great. I am not on any meds for my lungs, I do albuterol 3 times a week. I am doing and trying meds for RA. All the best to you. Stay safe Rita

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lorifilipek | @lorifilipek | May 5, 2020
In reply to @windwalker "I went off of all antibiotics 2 months ago. I took this initiative myself. I have..." + (show)
@windwalker

I went off of all antibiotics 2 months ago. I took this initiative myself. I have been on a bi-monthly regimen of ciprofloaxacin since 2013. I was mac free by 2014. I remained on the cipro as a deterrent all these yrs since with no problems. I had noticed that in recent times; it was giving me bad leg and foot cramps. Two months ago when I started on my usual cycle, the cramps were super severe, so I stopped taking it. It used to be that when I finished a med, I could go about 40 days with clear lungs and then they would start getting gummy again and knew it was time to go back on one. So far, my lungs have stayed clear for two months now. I am thinking it could be due to me isolating from the covid-19 and I am not exposing myself to too many strange germs. I do not recommend anybody do what I did. I do have an upcoming appt at Mayo in June and will see what my new dr has to say. Stay safe everyone!

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@windwalker Terri, Great! Good luck with staying off the meds!

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kayskid | @kayskid | Jun 14, 2020

Hi Sue, I can relate to your fears. I have Sjogren's as well and I am so disapointed that my immune system has failed in this way. Since the MAC diagnosis I have needed to change my self image from "healthy senior" to "elderly female with multiple co-morbidities". It is disapointing, but, we have to move forward. Information helps. So does fellowship. This forum seems like a good start. Please keep posting. I will follow your posts.

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hydrang3a | @hydrang3a | Jul 21, 2021
In reply to @irene5 "@hydrang3a I am so sorry you had the flu. I am sure many of us live..." + (show)
@irene5

@hydrang3a I am so sorry you had the flu. I am sure many of us live in daily fear of getting that and/or Covid19. Did you get the flu or pneumonia shot? irene5

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I have been away from this blog since recovery from the flu summer 2020 and enjoying great health until May 2021. May began with Bloody nose, headaches, coughing, fatigue, chills, weakness and uncontrollable shivers….Recent CT and Broncoscooy smears and cultures test positive once again for AFB….now the wait begins again to isolate the kind of micro bacteria for ideal antibiotic combo. In 2018 was on 8 weeks daily IV Amikacin followed by 18 months big 3 orally and Arikayce. Cultures and health improved. Negative for NTM. However it’s back now with a vengeance. Pulmonologist who did broncoscopy said right lung had massive amounts of infection. I am miserable….sick with weakness, quivering, and highly emotional…can’t do what I need and want to do…trying hard to eat well and take at least a brief walk every day…but it is increasingly challenging and being inside this quivering body it is hard to keep a positive attitude, I am very sad and depressed. Need help.
Any words of advice for one who is very sick with NTM please.

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2 replies
irene5 Irene Estes | @irene5 | Jul 21, 2021

@hydrang3a I am so very sorry you are so miserable. Like you, I did pretty well on the meds and Arikayce. Then came May 2021! I have been struggling with similar symptoms. It is very frustrating. My ID doctor suggested pro and prebiotics which should enable my body to better utilize nutrients. I am so sick today I had to tell my grandson he couldn’t come over. I don’t have encouraging words except to say I understand. It is not an easy journey, and each of us is different. I pray there will be a cure for all of us soon. Just don’t give up and keep putting one foot in front of the other as much as possible. See if there is a good anti depressant you could take. It might help. Blessings and hugs, irene

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 21, 2021
In reply to @hydrang3a "I have been away from this blog since recovery from the flu summer 2020 and enjoying..." + (show)
@hydrang3a

I have been away from this blog since recovery from the flu summer 2020 and enjoying great health until May 2021. May began with Bloody nose, headaches, coughing, fatigue, chills, weakness and uncontrollable shivers….Recent CT and Broncoscooy smears and cultures test positive once again for AFB….now the wait begins again to isolate the kind of micro bacteria for ideal antibiotic combo. In 2018 was on 8 weeks daily IV Amikacin followed by 18 months big 3 orally and Arikayce. Cultures and health improved. Negative for NTM. However it’s back now with a vengeance. Pulmonologist who did broncoscopy said right lung had massive amounts of infection. I am miserable….sick with weakness, quivering, and highly emotional…can’t do what I need and want to do…trying hard to eat well and take at least a brief walk every day…but it is increasingly challenging and being inside this quivering body it is hard to keep a positive attitude, I am very sad and depressed. Need help.
Any words of advice for one who is very sick with NTM please.

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I am so sorry to hear you are back in this situation. Who will be treating you?I remember 2017, 2018 and 2019 when I was so sick. All I can think of to say to you and @irene5 is to hang in there!

What kind of airway clearance are you using to try to loosen things in your lungs?

If you are really down, maybe Irene's suggestion about an antidepressant is worth considering.

Do you have someone to help you with chores until you feel better?

Sue

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Barb | @1065408 | Jul 22, 2021
In reply to @hydrang3a "I have been away from this blog since recovery from the flu summer 2020 and enjoying..." + (show)
@hydrang3a

I have been away from this blog since recovery from the flu summer 2020 and enjoying great health until May 2021. May began with Bloody nose, headaches, coughing, fatigue, chills, weakness and uncontrollable shivers….Recent CT and Broncoscooy smears and cultures test positive once again for AFB….now the wait begins again to isolate the kind of micro bacteria for ideal antibiotic combo. In 2018 was on 8 weeks daily IV Amikacin followed by 18 months big 3 orally and Arikayce. Cultures and health improved. Negative for NTM. However it’s back now with a vengeance. Pulmonologist who did broncoscopy said right lung had massive amounts of infection. I am miserable….sick with weakness, quivering, and highly emotional…can’t do what I need and want to do…trying hard to eat well and take at least a brief walk every day…but it is increasingly challenging and being inside this quivering body it is hard to keep a positive attitude, I am very sad and depressed. Need help.
Any words of advice for one who is very sick with NTM please.

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So sorry for how badly you feel. Sending hope and prayers for “one day at a time” mentality that will eventually lead to “one week at a time”. It will get better. It’s a tough road, but you’ve got this.

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p44 | @p44 | Oct 13, 2022
In reply to @hydrang3a "@irene5 and @windwalker .,.i had both the flu shot and the pneumonia shots in October...got the..." + (show)
@hydrang3a

@irene5 and @windwalker .,.i had both the flu shot and the pneumonia shots in October...got the flu in March....was told later that the flu shot is only 50% prevention effective

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I got the senior dose flu shot Sept 20th,I am now in the 6th day of the worse flu case I gave had in 20years!!! I am 77 and basically healthy. So don't be to confident about the shot!!!

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