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.

@lnduh66

Thank you so much for all your responses and you have definitely eased my anxiety going into this procedure. This is a case where this whole thing came out of the blue to me. Almost 3 years ago I had bilateral mastectomies for breast cancer and in 6-month followup my oncologist ordered an abdominal CT to make sure there was no pancreatic involvement (due to an ATM gene mutation). Good news..no pancreatic cancer; the bad news…bronchiectasis with significant mucus plugging, differential includes MAI infection. This was followed up with an abdominal MRI (for a liver lesion) and then a HRCT. These all confirmed the diagnosis radiographically. I suppose the bronch is for identification of the infection or maybe to definitely rule out lung cancer, though he said it was not. I am so glad I was directed to this site, as you all made me feel better about facing the procedure tomorrow. Again, thank you!

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@Induh66 I'm Nan, not on here a whole lot but I do read everything and I wanted to let you know I had a bronchoscopy three years ago when I was first diagnosed with bronchiectasis and MAC and it was nothing. And I'm actually going in two days from now for another one and I know this sounds weird but I'm glad for it. I got the flu very bad last year and have now had a cough that resulted from it and has lasted a year so my doctor wants to go down there and take a look to see if he can find anything. I've been testing negative for MAC on the last two sputum tests but I think he wants to go a little deeper.

Liked by Brenda R.

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Once again, thank you all for the support with my anxiety issues about having my first bronchoscopy. The hospital staff was great. I was totally out for the whole procedure and don't remember a thing. Quite a bit of coughing in the evening, but nothing significant. Now… wait for the path report and the next step of my journey. Yes, this site does help.

Liked by Brenda R.

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@lnduh66

Once again, thank you all for the support with my anxiety issues about having my first bronchoscopy. The hospital staff was great. I was totally out for the whole procedure and don't remember a thing. Quite a bit of coughing in the evening, but nothing significant. Now… wait for the path report and the next step of my journey. Yes, this site does help.

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@induh66 Hi. I am glad your procedure went alright. I didn't want to say anything until after your bronchoscopy. I had one done in 2005 by a sadistic doctor who did NOT give me the twilight sedation for mine. She only gave me 5 mg of valium (which did nothing). It was the most horrifying experience I have ever had, and vowed that I would rather die than have another bronchoscopy. She had two orderlies hold me down while she did the procedure. She jammed the scope down into my lungs with such a force that it hit the end of my lung with a thud. I thought I'd go through the roof! Plus, the tube going down into your bronchial tube filled the entire space so that I had the sensation of suffocating, that is the point where the orderlies had to pin me down. I did not know at that time that you should be put under for that procedure. I hate to say this, but I think she did not like white people and took it out on me. I say that because my gut feeling felt that when I first consulted with her. I should have listened to that feeling and gone somewhere else. So, just clarifying for anybody getting a bronchoscope; twightlight sedation is supposed to be induced.

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@lnduh66

@windwalker That is great that you were able to control your acid reflux. I am curious at to what lifestyle changes you made for it to go away? I have been on omeprazole for years and would like to get off of it. I imagine I will have to give up my wine and chocolate for a start.

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@induh66 If you can take a break from the wine, even briefly will help. That will give the inflammation in your esophagus a chance to go down. Alcohol added to acid reflux is like throwing gasoline on a fire. There is a search box at the top of this page, you can type in 'acid reflux' or GERD and info should come up. The Mayo sight has info about modifying your lifestyle also. Main thing is; do not eat or drink anything except a little water 3 hours before bedtime. Elevating your bed 6" at the head of the mattress. Avoid acid forming foods, the site has a list of foods to avoid. My reflux was so bad that it was corroding my esophagus and I was on my way to having Barrett's Syndrome, which can lead to esophageal cancer. Be sure to look into acid reflux prevention; you will feel so much better!

Liked by lnduh66

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@windwalker

@induh66 Hi. I am glad your procedure went alright. I didn't want to say anything until after your bronchoscopy. I had one done in 2005 by a sadistic doctor who did NOT give me the twilight sedation for mine. She only gave me 5 mg of valium (which did nothing). It was the most horrifying experience I have ever had, and vowed that I would rather die than have another bronchoscopy. She had two orderlies hold me down while she did the procedure. She jammed the scope down into my lungs with such a force that it hit the end of my lung with a thud. I thought I'd go through the roof! Plus, the tube going down into your bronchial tube filled the entire space so that I had the sensation of suffocating, that is the point where the orderlies had to pin me down. I did not know at that time that you should be put under for that procedure. I hate to say this, but I think she did not like white people and took it out on me. I say that because my gut feeling felt that when I first consulted with her. I should have listened to that feeling and gone somewhere else. So, just clarifying for anybody getting a bronchoscope; twightlight sedation is supposed to be induced.

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Yes, i am so glad I did not hear that story before the procedure, Terri. Let this be a lesson to those undergoing in the future, conscious sedation and everything will be fine.

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@windwalker

@induh66 Hi. I am glad your procedure went alright. I didn't want to say anything until after your bronchoscopy. I had one done in 2005 by a sadistic doctor who did NOT give me the twilight sedation for mine. She only gave me 5 mg of valium (which did nothing). It was the most horrifying experience I have ever had, and vowed that I would rather die than have another bronchoscopy. She had two orderlies hold me down while she did the procedure. She jammed the scope down into my lungs with such a force that it hit the end of my lung with a thud. I thought I'd go through the roof! Plus, the tube going down into your bronchial tube filled the entire space so that I had the sensation of suffocating, that is the point where the orderlies had to pin me down. I did not know at that time that you should be put under for that procedure. I hate to say this, but I think she did not like white people and took it out on me. I say that because my gut feeling felt that when I first consulted with her. I should have listened to that feeling and gone somewhere else. So, just clarifying for anybody getting a bronchoscope; twightlight sedation is supposed to be induced.

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@windwalker …that is a horrific experience! I am gasping as I read it!! Sorry for your bad encounter with that stinker doc…and you are so right…the gut tells you what to do if you listen.

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Ha ha! I spoke too soon earlier. I breezed through the bronchoscopy on Tuesday, that evening and the next morning. Quite a bit of coughing but no sore throat. By Wednesday afternoon I felt sick and continually got worse over the next couple days. Just all-over aches and pains, no stuffiness or sore throat, mostly bone pain. Ended up in the doc office with a viral infection and PA put me on steroids for 5 days. Finally feeling a little better this morning. Don't know if I picked up a bug at the hospital or if it was already brewing before the scope. It was nasty whatever it was. While I was there, I was told the initial cultures were clear, but as you all know, it is the fungal report that is the key. He is sure I have it so, just have to wait for confirmation then referral to ID.

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@windwalker

@induh66 Hi. I am glad your procedure went alright. I didn't want to say anything until after your bronchoscopy. I had one done in 2005 by a sadistic doctor who did NOT give me the twilight sedation for mine. She only gave me 5 mg of valium (which did nothing). It was the most horrifying experience I have ever had, and vowed that I would rather die than have another bronchoscopy. She had two orderlies hold me down while she did the procedure. She jammed the scope down into my lungs with such a force that it hit the end of my lung with a thud. I thought I'd go through the roof! Plus, the tube going down into your bronchial tube filled the entire space so that I had the sensation of suffocating, that is the point where the orderlies had to pin me down. I did not know at that time that you should be put under for that procedure. I hate to say this, but I think she did not like white people and took it out on me. I say that because my gut feeling felt that when I first consulted with her. I should have listened to that feeling and gone somewhere else. So, just clarifying for anybody getting a bronchoscope; twightlight sedation is supposed to be induced.

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Oh my gosh Terri! My mom had an AWFUL experience, felt she was being waterboarded and has sworn she will never do it again, but NOTHING like that! I cannot even fathom!!!!!

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@kristiemlove

Oh my gosh Terri! My mom had an AWFUL experience, felt she was being waterboarded and has sworn she will never do it again, but NOTHING like that! I cannot even fathom!!!!!

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@kristiemlove, It sounds like your mom didn't have the twilight anesthesia either. Mine felt like waterboarding also. It was terrifying.

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@lnduh66

Ha ha! I spoke too soon earlier. I breezed through the bronchoscopy on Tuesday, that evening and the next morning. Quite a bit of coughing but no sore throat. By Wednesday afternoon I felt sick and continually got worse over the next couple days. Just all-over aches and pains, no stuffiness or sore throat, mostly bone pain. Ended up in the doc office with a viral infection and PA put me on steroids for 5 days. Finally feeling a little better this morning. Don't know if I picked up a bug at the hospital or if it was already brewing before the scope. It was nasty whatever it was. While I was there, I was told the initial cultures were clear, but as you all know, it is the fungal report that is the key. He is sure I have it so, just have to wait for confirmation then referral to ID.

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@induh66 Please keep us posted on what your results are. Hang in there!

Liked by lnduh66

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Hello everyone…I saw my new pulmonologist today and he prescribed the rifamprin and decreased my previous 1200mg a day ethambutol to 800mg. I finally feel a little relieved that I have the necessary medicines to help kill the infection. Frustrating I had to wait this long and the previous pulmonologist didn’t think it was needed. I still have yet to see an ID Doctor but the referal was made. What are the advantages of ID Doctor? Any questions I should ask them when I see them? Also anyone with Bronchiectasis what treatment if any helped you? Are inhalers a good idea? My new pulmonologist said that I have moderate Bronchiectasis and he agrees with the MAC infection diagnosis as well. I will be starting the Rifampin tomorrow. Anyone had any issues with this medicine? The other 2 seem to be ok for me so far. It’s been 28 days since starting the meds. Hope everyone had a good day today and ready for spring to arrive!

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@laura34 The advantage of having an ID doctor is that MAC is an infectious disease. An ID doctor will know (should know) more than the pulmonologist in terms of best treatments for MAC. Most pulmonologists don’t have MAC as a specialty. My pulmonologist and my ID doctor work together on my behalf. (Two heads are better than one!) (Irene5)

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@irene5

@laura34 The advantage of having an ID doctor is that MAC is an infectious disease. An ID doctor will know (should know) more than the pulmonologist in terms of best treatments for MAC. Most pulmonologists don’t have MAC as a specialty. My pulmonologist and my ID doctor work together on my behalf. (Two heads are better than one!) (Irene5)

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Thanks Irene. I am interested to see what the ID doctor has to say. I was a little skeptical being referred to ID considering they don’t specialize in the lungs but I guess it makes sense.

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Hi I am curious if anyone has ocular infection from the NTM MAC? I woke up today with eye pain and a red ring under my iris. It hurt enough to go to optometrist. She seems to think it’s from the infection. I was concerned it was from a side effect of the medication Ethambutol. It’s my right eye. Not itchy or runny just very painful and the red ring like where your iris meets the white part of eye. Has anyone else experienced this? I’m on steroids topical drops for now. I guess still take the Ethambutol for now too. Thanks
Laura

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Laura34…did the eye doctor do a culture from your eye?tdrell

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