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.

@irene5

@cindyrue I am so sorry for you. I think the problem with doctors isn’t that they don’t care, but they are frustrated by this disease. Clearly the meds did not seem to help you but only made you more miserable. I guess then a doctor feels that the “cure is worse than the disease” so they decide to monitor it every six months. Maybe you could ask them about sending you out to National Jewish Health or a particular Mayo near you. Having had shingles doesn’t help either especially if you have post shingles pain (without the rash). Eating a nutritious diet is very important with MAC. I’m not an exercise kind of gal. Vacuuming is good enough for me. I am also so very sorry about your child. I can’t even imagine that pain. Praying for you. Some of us are sicker than others, but we are all in this together. (irene5)

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@irene5
what a lovely, caring response. Flib

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@cindyrue…I agree with irene5 and tdrell. You need facility that will treat the whole body. If you are unable to access the best as tdrell suggests, find a PCP or the lung doctor's PA who will spend more time listening.I also suggest you advocate for yourself by reading about Chronic Cough and suggest Dr. jamie Kaufman's book. In addition I have found more relief from my chinese Dr who practices acupuncture. She treats the whole body and was able to stop my nerve related cough. This may seem weird, but the Chinese believe that lung issues stem from sadness and it helps to get therapy for the terrible loss you've suffered.

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@egayle187

@cindyrue…I agree with irene5 and tdrell. You need facility that will treat the whole body. If you are unable to access the best as tdrell suggests, find a PCP or the lung doctor's PA who will spend more time listening.I also suggest you advocate for yourself by reading about Chronic Cough and suggest Dr. jamie Kaufman's book. In addition I have found more relief from my chinese Dr who practices acupuncture. She treats the whole body and was able to stop my nerve related cough. This may seem weird, but the Chinese believe that lung issues stem from sadness and it helps to get therapy for the terrible loss you've suffered.

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This is interesting. I also lost my son several years ago. I was and am still very sad. It is when I started getting sick with MAC.

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@irene5

@cindyrue I am so sorry for you. I think the problem with doctors isn’t that they don’t care, but they are frustrated by this disease. Clearly the meds did not seem to help you but only made you more miserable. I guess then a doctor feels that the “cure is worse than the disease” so they decide to monitor it every six months. Maybe you could ask them about sending you out to National Jewish Health or a particular Mayo near you. Having had shingles doesn’t help either especially if you have post shingles pain (without the rash). Eating a nutritious diet is very important with MAC. I’m not an exercise kind of gal. Vacuuming is good enough for me. I am also so very sorry about your child. I can’t even imagine that pain. Praying for you. Some of us are sicker than others, but we are all in this together. (irene5)

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Thank you. I pray every day and I could not survive without Jesus

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@egayle187

@cindyrue…I agree with irene5 and tdrell. You need facility that will treat the whole body. If you are unable to access the best as tdrell suggests, find a PCP or the lung doctor's PA who will spend more time listening.I also suggest you advocate for yourself by reading about Chronic Cough and suggest Dr. jamie Kaufman's book. In addition I have found more relief from my chinese Dr who practices acupuncture. She treats the whole body and was able to stop my nerve related cough. This may seem weird, but the Chinese believe that lung issues stem from sadness and it helps to get therapy for the terrible loss you've suffered.

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I did get counseling – Biblical Counseling and it helped me so much. I will get a second opinion.

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@xfirerose

This is interesting. I also lost my son several years ago. I was and am still very sad. It is when I started getting sick with MAC.

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So sad for your loss. The pain is indescribable. The loss changed everything. I think stress causes immune system to go down and that is what happened to me.

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@xfirerose

This is interesting. I also lost my son several years ago. I was and am still very sad. It is when I started getting sick with MAC.

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@xfirerose I agree, stress can bring on disease. I got my mac infection shortly after losing my dear father to lung cancer. My sister also came down with vitigilio at that time. Our immunity definitely dropped from the stress we were dealing with.

Liked by heathert, Jennifer

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@cindyrue

When i ask dr about the bones and digestive system, he says that is not what i do. I only do lungs. you need to talk to your pcp. It has been a hard journey. I started getting sick 2 years after my only child died. i exercised 4 days a week and started getting dizzy at classes and out of breath. I was diagnosed with just infections for first year til i got pneumonia and shingles. Then I was sent to specialist and he did sputum tests and found out it was micro bacterium avium intercellulare. I was then sent to a disease dr who made me go thru the tests again and i tested positive again. She then put me on 3 powerful antibiotics for almost a year, did blood work every month and then another ct scan to then tell me the meds did not work. She wanted to put me on more meds, but i declined. I suffered for months with stomach cramps, diarrhea and just so sick on the meds. So now i am with lung dr who says every 6 months. lets do another ct scan and talk about it then. I feel like dr does not care. I left his office last week crying.

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@cindyrue Hi Cindy. I know the frustration that you feel from not getting the treatment and support that you need right now. I have been in your shoes.There are other treatment options out there besides the Big 3 antibiotics. I hate calling them the Big 3 and want to find another name for that combo because they really aren't that powerful according to my doctor at Mayo Clinic. You can click on my photo icon and my bio will pop up and you can read how I was treated, and there are new inhalable antibiotics now available too. There is a wealth of information in our past conversations and on the Discussion Board located on the main Mac & Bronchiectasis group page. You must be your own best health advocate. Learn all that you can about this disease; not only on this site, but others like NJH.org, NIH.gov, NTMinfo.org etc. If you are too tired, upset, or sick to do this legwork, I understand. Feel free to pick my brain. I may not know the answers, but I can help you to try to find them. Hang in there, keep looking for what will make you well again. That goes for mental health also. Losing your child is a tough one, no words of comfort can fill that void. Some say counceling may teach you some coping skills to deal with the grief, I don't know. My daughter just lost her closest friend to suicide a few weeks back and I spent days listening to her cry and howl like a wild animal in grief. The pain of loss was unbearable. It was heart-breaking. I put her into counceling the next week and it is helping her. Stress and depression can cause weakness in your immune system, and then illness ensues; so please take care of yourself.

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@cindyrue

When i ask dr about the bones and digestive system, he says that is not what i do. I only do lungs. you need to talk to your pcp. It has been a hard journey. I started getting sick 2 years after my only child died. i exercised 4 days a week and started getting dizzy at classes and out of breath. I was diagnosed with just infections for first year til i got pneumonia and shingles. Then I was sent to specialist and he did sputum tests and found out it was micro bacterium avium intercellulare. I was then sent to a disease dr who made me go thru the tests again and i tested positive again. She then put me on 3 powerful antibiotics for almost a year, did blood work every month and then another ct scan to then tell me the meds did not work. She wanted to put me on more meds, but i declined. I suffered for months with stomach cramps, diarrhea and just so sick on the meds. So now i am with lung dr who says every 6 months. lets do another ct scan and talk about it then. I feel like dr does not care. I left his office last week crying.

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cindyrue….you have been through so much….if you can try and get into Mayo Clinic or National…they are the best…this support is an incredible support system both emotionally, and info..no that you are being heard and guided in this sometimes difficult journey of lufe💖

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Has anyone had this and if so could you share your journey, I am just starting and am very scared. Does the meds take this away or do we always have this

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@jkiemen

@ann0616 Kind of sounds like what I had happen. Generally healthy until a sudden case of pneumonia. Just completely out of the blue. It scars the heck out of you. I am the same age and also live in Wisconsin about 20 miles from Lake Geneva. I am seeing Pulmonary in Milwaukee at St Luke's and had another opinion at Froedert. I was diagnosed in 2015 and started treatment in 2017. My first dose was Nov 30, 2017. I have had several CT's along the way. Each time I have one I go into panic mode because I am scared. I have a CT scheduled for March to see if I can stop the meds. Now I developed a UTI so dealing with that. Nothing like being on and additional antibiotic and trying to find one that is not contraindicated with the BIG 3. (Azitromycin, Ethambutol and Rifampin) By the way I was thinking I may have been exposed when I went to a conference at the Monona Terrace as I was in the small closed room where they had the hot tub for a while.

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@jkiemen Hi Jo Ann. It's encouraging to hear that you're doing well on the meds and are finishing up your round of treatment. Can you tell me how they are testing to see if you are negative for the bacteria? My understanding is that they test sputum on a regular basis (monthly?) and once you achieve your first negative test, they recommend meds for another 12 months. If you can't produce sputum, do they have to do regular broncoscopies to get the culture?

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@megan123

cindyrue….you have been through so much….if you can try and get into Mayo Clinic or National…they are the best…this support is an incredible support system both emotionally, and info..no that you are being heard and guided in this sometimes difficult journey of lufe💖

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thank you Jennifer. I am going to try another lung specialist.

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@windwalker

@cindyrue Hi Cindy. I know the frustration that you feel from not getting the treatment and support that you need right now. I have been in your shoes.There are other treatment options out there besides the Big 3 antibiotics. I hate calling them the Big 3 and want to find another name for that combo because they really aren't that powerful according to my doctor at Mayo Clinic. You can click on my photo icon and my bio will pop up and you can read how I was treated, and there are new inhalable antibiotics now available too. There is a wealth of information in our past conversations and on the Discussion Board located on the main Mac & Bronchiectasis group page. You must be your own best health advocate. Learn all that you can about this disease; not only on this site, but others like NJH.org, NIH.gov, NTMinfo.org etc. If you are too tired, upset, or sick to do this legwork, I understand. Feel free to pick my brain. I may not know the answers, but I can help you to try to find them. Hang in there, keep looking for what will make you well again. That goes for mental health also. Losing your child is a tough one, no words of comfort can fill that void. Some say counceling may teach you some coping skills to deal with the grief, I don't know. My daughter just lost her closest friend to suicide a few weeks back and I spent days listening to her cry and howl like a wild animal in grief. The pain of loss was unbearable. It was heart-breaking. I put her into counceling the next week and it is helping her. Stress and depression can cause weakness in your immune system, and then illness ensues; so please take care of yourself.

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Thank you, Will be checking more. i know my immune system was compromised. I have started taking bone broth capsules. will see if that helps. I have had counseling with a biblical counselor and it helped me tremendously. I will go to my grave missing my beautiful daughter, but I know living here is different now. I want to help others, but i want to me well again. I am looking to find another lung doctor.

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@cindyrue

Thank you, Will be checking more. i know my immune system was compromised. I have started taking bone broth capsules. will see if that helps. I have had counseling with a biblical counselor and it helped me tremendously. I will go to my grave missing my beautiful daughter, but I know living here is different now. I want to help others, but i want to me well again. I am looking to find another lung doctor.

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@cindyrue I am glad that you are seeking another doctor. Good medical care is essential to treating this disease. I am also glad that the biblical counceler is helping you. ❤

Liked by cindyrue

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@ginak

@andyj I have also been diagnosed with MAC/MAI. I’ve been having CT scans since 2013 which have always shown nodules. I was also told COPD. I smoked for 22 years and my parents smoked since I was born. In Sept 2016, I was also diagnosed with AFib. I was put on blood thinners. In Oct I started coughing up large amounts of blood. Went to the ER and stopped the Eloquis. I wound up having an ablation to get the AFib under control, my heart felt like it was exploding and they couldn’t get it regular with medication. During that time, a CT scan showed a large nodule in my left lobe. After 6 trips to the ER for coughing up blood, that Dec I Had to have the nodule removed and a biopsy. Dr said good news – no cancer. BUT “you have MAC/MAI”. For as long as I can remember I have had a cough, mostly dry, sometimes mucus, and constant throat clearing. Ten+ years ago I was told it was from acid reflux and post nasal drip. I wish they had told me then that could be a cause Of lung issues. I have some shortness of breath; if I walk quickly and talk, carry heavy things, walk in the cold, but otherwise that’s it. (I think if I lost about 15 pounds that would improve.) Other than that, no other symptoms, so no antibiotics. I have a CT scan scheduled for this Friday, hopefully it will be stable and prayerfully some improvements. It seems the nodules come and go, grow and shrink. But I NEVER go in hot tubs and although I LOVE swimming, I will NEVER swim in an indoor pool. I find the air just too hard to breath and I think there’s just too much bacteria. No water or ice from fridge, I boil my water. I also garden with a mask. I try to take precautions where I can. Sorry this turned out so long, lol. Good luck in whatever you decide.

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Oh, my goodness – did it take that long for the MAC diagnosis? I appreciate your sharing and read every word. Have you provided sputum for lab analysis? Seems like a doc would be recommending antibiotic treatment. Sorry this reply took so long…I'm kind of in denial, but going to cardiologist today to discuss changing a medication that would interfere with MAC treatment. Hope your CT scan was informative in a positive way!

Liked by ginak

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