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.

@laura34

Hi Sue… a little background on me. I am 34 in the military. Deployed 3 times to Iraq once to Afghanistan. Most likely got the broncheastasis from the burn pits as I am otherwise very healthy never smoked. Last 2-1/2 years I been coughing small amounts of blood so I thought I should finally tell the doc. They did chest X-ray and saw some abnormalities. Followed up by ct and found bilateral scarring on the lungs and multiple modules and cavities. They biopsied the suspicious nodule and diagnosed with MAC lung disease. My pulmonary doctor doesn’t seem to be very knowledgeable and referred me to infectious medicine doctor who I haven’t met with yet due to referral process. I’m trying to get second opinion from a different pulmonologist on everything. I’ve had no mention of treatment for the broncheastasis. My condition is getting worse by the day and my lungs feel like they are on fire. I’ve called twice asking about the medication prescribed with no answer. It is really disappointing. For now I am taking the ethambutol and arythromycin until I can get more answers. I just feel like time is not on my side and this isn’t doing what it needs to do to treat it. Thank you for the reply.

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Hi Laura,
I am not surprised that military docs are unfamiliar with bronchiectasis – it's probably not prevalent in their usual population The infectious disease doc is probably a good bet for treating MAC, but whether the underlying condition require treatment too is a question for pulmonology. Not too familiar with the referral process for active duty military, but you may need to be seen "outside the system" for someone with bronch expertise. Good luck and keep asking questions. PS – the good news is that MAC is a relatively slow-growing infection, so the 2 drugs may be okay to keep it from progressing while you work through the process. There are medications and therapies to manage the bronchiectasis itself, to slow progression of damage and make breathing easier. The "burning" makes me wonder what else is going on…

@sueinmn

Hi Laura,
I am not surprised that military docs are unfamiliar with bronchiectasis – it's probably not prevalent in their usual population The infectious disease doc is probably a good bet for treating MAC, but whether the underlying condition require treatment too is a question for pulmonology. Not too familiar with the referral process for active duty military, but you may need to be seen "outside the system" for someone with bronch expertise. Good luck and keep asking questions. PS – the good news is that MAC is a relatively slow-growing infection, so the 2 drugs may be okay to keep it from progressing while you work through the process. There are medications and therapies to manage the bronchiectasis itself, to slow progression of damage and make breathing easier. The "burning" makes me wonder what else is going on…

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Thanks Sue, the army doctor referred me to my current doctor who is a pulmonologist who did the bronch. My pulmonologist is referring me to the infectious medicine doctor to treat the MAC but unfortunately isn’t a lung specialist only infectious medicine. I asked my army doctor whom you’re right isn’t very familiar with this to refer me to a different pulmonologist who also specializes in complex lung infections which would also be able to provide a second opinion on everything hopefully. I hope the referral process is fast. Good to know it’s a relatively slow growing infection until I can meet with the new doctor. I will ask my current pulmonologist the questions you previously asked those are very good questions. Thanks again. I hope wherever you are in this process is going well for you! I’ll post an update once I know more. Have a good weekend.

@laura34

Hi Sue… a little background on me. I am 34 in the military. Deployed 3 times to Iraq once to Afghanistan. Most likely got the broncheastasis from the burn pits as I am otherwise very healthy never smoked. Last 2-1/2 years I been coughing small amounts of blood so I thought I should finally tell the doc. They did chest X-ray and saw some abnormalities. Followed up by ct and found bilateral scarring on the lungs and multiple modules and cavities. They biopsied the suspicious nodule and diagnosed with MAC lung disease. My pulmonary doctor doesn’t seem to be very knowledgeable and referred me to infectious medicine doctor who I haven’t met with yet due to referral process. I’m trying to get second opinion from a different pulmonologist on everything. I’ve had no mention of treatment for the broncheastasis. My condition is getting worse by the day and my lungs feel like they are on fire. I’ve called twice asking about the medication prescribed with no answer. It is really disappointing. For now I am taking the ethambutol and arythromycin until I can get more answers. I just feel like time is not on my side and this isn’t doing what it needs to do to treat it. Thank you for the reply.

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@laura34…..thank you so much for your service especially to dangerous war zones. Are you aware of National Jewish Health in Denver. They specialize in Mycobacterium Infections….but also have a section there called Deployment Related Lung Disease Program. According to info on Nationaljewish.org website….a description of that section says it is part of Veterans Choice Program. I went to NJH 2 years ago…..for second opinion….turns out the local treatment was totally incorrect. I just returned from 3rd annual follow up appt there….even more impressed. Take a look at their web site and put in the above section. Again….thank you for your service.. what branch? Tdrell

@tdrell

@laura34…..thank you so much for your service especially to dangerous war zones. Are you aware of National Jewish Health in Denver. They specialize in Mycobacterium Infections….but also have a section there called Deployment Related Lung Disease Program. According to info on Nationaljewish.org website….a description of that section says it is part of Veterans Choice Program. I went to NJH 2 years ago…..for second opinion….turns out the local treatment was totally incorrect. I just returned from 3rd annual follow up appt there….even more impressed. Take a look at their web site and put in the above section. Again….thank you for your service.. what branch? Tdrell

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Tdrell,
Thank you for the information. I will definitely look into that. Unfortunately I am stationed in Fort Drum which is in Upstate NY so not sure how I may get the chance to go there being active duty stationed in NY. Definitely worth looking into esp for the depolyment related specialty. I am helicopter pilot in the US Army. Going on 15 years now. Glad to hear you have peace of mind at the NJH. That is a relief in itself!

@laura34

Tdrell,
Thank you for the information. I will definitely look into that. Unfortunately I am stationed in Fort Drum which is in Upstate NY so not sure how I may get the chance to go there being active duty stationed in NY. Definitely worth looking into esp for the depolyment related specialty. I am helicopter pilot in the US Army. Going on 15 years now. Glad to hear you have peace of mind at the NJH. That is a relief in itself!

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@laura34……I would call or email the Deployment Related Lung Disease folks and see how to go about seeing them….and as Sueinmn said….MAC is slow growing. One other possibility might be that there is a connection in NYC I think.have you been on NationalJewish.Org web site? 15 years….again thank you thank you….helicopters have saved many lives in the war zones and you. Were in high danger areas and deserve the best care available now….tdrell

Diagnosed with bronchiectasis on HRCT a few weeks ago and bronchoscopy has been ordered for this coming Tuesday. I am SO nervous about it that I am making myself sick. I hate the idea of having my throat numbed and not being able to feel like I can swallow. I freak out when my dentist drips a little anesthetic down my throat when I have dental work done, so I cannot imagine how this might be, let alone the rest of the procedure. The pulmonologist has already said that there is infection and to expect the antibiotic regimen. Wish me luck!.

@lnduh66

Diagnosed with bronchiectasis on HRCT a few weeks ago and bronchoscopy has been ordered for this coming Tuesday. I am SO nervous about it that I am making myself sick. I hate the idea of having my throat numbed and not being able to feel like I can swallow. I freak out when my dentist drips a little anesthetic down my throat when I have dental work done, so I cannot imagine how this might be, let alone the rest of the procedure. The pulmonologist has already said that there is infection and to expect the antibiotic regimen. Wish me luck!.

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I am so sorry about your diagnosis. But please don’t be nervous it’s really not dangerous in anyway. I was so nervous when I had my done because I only have one vocal cord. But l told the doctor and he explained the whole procedure. It not going to hurt anything and you won’t feel any pain and before you know it’s done. I just want to encourage you! Wish you all the best and hugs to you! Rita

@lnduh66

Diagnosed with bronchiectasis on HRCT a few weeks ago and bronchoscopy has been ordered for this coming Tuesday. I am SO nervous about it that I am making myself sick. I hate the idea of having my throat numbed and not being able to feel like I can swallow. I freak out when my dentist drips a little anesthetic down my throat when I have dental work done, so I cannot imagine how this might be, let alone the rest of the procedure. The pulmonologist has already said that there is infection and to expect the antibiotic regimen. Wish me luck!.

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@induh66
A bronchoscope isn't any thing to dread…try not to worry. I have had probably 5 now. My Doctor has used them as a wash for me beside to get sputum samples. I also consider myself an anxious person. You are well sedated and don't really feel anything in your throat. For me I felt the liquid swishing in my lungs but wasn't really uncomfortable. I think my Dr uses more liquid because it's a wash for me. I have asthma and my bronchial tree has become blocked. I usually feel much better afterwards in my case because it opens my bronchial passages. Others on the forum will probably chime in on their experiences.
Best wishes!

@lnduh66

Diagnosed with bronchiectasis on HRCT a few weeks ago and bronchoscopy has been ordered for this coming Tuesday. I am SO nervous about it that I am making myself sick. I hate the idea of having my throat numbed and not being able to feel like I can swallow. I freak out when my dentist drips a little anesthetic down my throat when I have dental work done, so I cannot imagine how this might be, let alone the rest of the procedure. The pulmonologist has already said that there is infection and to expect the antibiotic regimen. Wish me luck!.

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When I went for my bronchoscopy I let the anesthetist know I was nervous and he explained the procedure clearly. He began the sedation and the next thing I remember was waking up and it was over. I didn’t feel or remember a thing.

@pfists

@induh66
A bronchoscope isn't any thing to dread…try not to worry. I have had probably 5 now. My Doctor has used them as a wash for me beside to get sputum samples. I also consider myself an anxious person. You are well sedated and don't really feel anything in your throat. For me I felt the liquid swishing in my lungs but wasn't really uncomfortable. I think my Dr uses more liquid because it's a wash for me. I have asthma and my bronchial tree has become blocked. I usually feel much better afterwards in my case because it opens my bronchial passages. Others on the forum will probably chime in on their experiences.
Best wishes!

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@Induh66 Hi, i agree with both @america and @pfists….nothing to worry yourself about!!! I have had 3 so far and was sedated and didn’t know anything that happened. Woke up and just had a little scratchy throat. I have been on the Big 3 antibiotics for 18 months now. Probably looking at going on the new approved inhaled Arikayce soon. Blessings to you on your test and please don’t stress yourself over this!! Let us hear from you afterwards!! Yaggi01

@lnduh66

Diagnosed with bronchiectasis on HRCT a few weeks ago and bronchoscopy has been ordered for this coming Tuesday. I am SO nervous about it that I am making myself sick. I hate the idea of having my throat numbed and not being able to feel like I can swallow. I freak out when my dentist drips a little anesthetic down my throat when I have dental work done, so I cannot imagine how this might be, let alone the rest of the procedure. The pulmonologist has already said that there is infection and to expect the antibiotic regimen. Wish me luck!.

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@induh66 Hello, and welcome to our group. I am curious, if they know you have bronchiectasis and an infection, and are planning to put you on the antibiotics; then what is the purpose of the bronchioscope?

@laura34

Hi…I’ve been recently diagnosed with MAC lung disease from a bronchoscopy. I was prescribed ethambutol and arythromycin. I have broncheastasis as well. Have a constant burning feeling in my lungs. It’s been 2 days since starting the antibiotics. I’m curious why my doctor didn’t prescribe the 3rd antibiotic called rifampin? Everything I read is saying it’s a hard infection to beat especially if you have damaged lungs from the broncheastasis. I am taking one pill of the arythromycin and 1200mg which is 3 pills of the ethambutol daily as well every day. Curious what everyone’s thoughts are on this if it sounds right? Not getting much answers from the doctor at the moment. I’m in the process of getting a new referal. Thanks for any reply’s.

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@laura34 Hi Laura. I was diagnosed in 2005 with mac and I declined the 3 drug regimen. I was put on a two week run of azithromycin and it knocked the infection down. I don't know if it went away because I was never tested again for it until I went to the Mayo Clinic in 2013. (That was negligent of my former pulmonologist, and I didn't know that I could have requested regular sputem testing) In 2013 I was put on two antibiotics. If you click on my picture here you can read about my treatment plan. My point is, is that a patient's treatment plan needs to be individualized. It is not a one treatment fits all. MAC disease in itself it difficult to treat effectively because it is constantly morphing and it's specie list is growing. Kind of like chasing the wind. Now, if you add to that a physician that is unfamiliar with treating this….and believe me, there are many that are (unfamiliar). It would really be helpful for you to go to the Discussion Board located on our group's main page. There is a list of topics there. It would serve you well to learn all that you can about mac. That way you will know what questions to ask your doctors and also you will be able to distinguish whether or not you are getting proper care. I too, want to extend my gratitude to you for your service. I cannot even imagine being in the throes of that middle east warfare.

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@laura34

Hi…I’ve been recently diagnosed with MAC lung disease from a bronchoscopy. I was prescribed ethambutol and arythromycin. I have broncheastasis as well. Have a constant burning feeling in my lungs. It’s been 2 days since starting the antibiotics. I’m curious why my doctor didn’t prescribe the 3rd antibiotic called rifampin? Everything I read is saying it’s a hard infection to beat especially if you have damaged lungs from the broncheastasis. I am taking one pill of the arythromycin and 1200mg which is 3 pills of the ethambutol daily as well every day. Curious what everyone’s thoughts are on this if it sounds right? Not getting much answers from the doctor at the moment. I’m in the process of getting a new referal. Thanks for any reply’s.

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@laura34 I wanted to add that I used to complain that my lungs burned all of time. My dr said there is no nerve endings in the lungs, therefore it wasn't them that was burning. The burning sensation turned out to be acid reflux. It was my esophagus and maybe part of my bronchial tree that burned from acid erosion. Once I treated that and made lifestyle changes; it went away. You having been exposed to burn pits may very well have damage from that. That was a great tip from Terri aka @tdrell about NJH having a special dept for service people.

Liked by tdrell

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!

@windwalker

@laura34 I wanted to add that I used to complain that my lungs burned all of time. My dr said there is no nerve endings in the lungs, therefore it wasn't them that was burning. The burning sensation turned out to be acid reflux. It was my esophagus and maybe part of my bronchial tree that burned from acid erosion. Once I treated that and made lifestyle changes; it went away. You having been exposed to burn pits may very well have damage from that. That was a great tip from Terri aka @tdrell about NJH having a special dept for service people.

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@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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