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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 2019
In reply to @andyj "Thanks, Terri...I'll check out 'hot tub lung' and look for a local lab that could test..." + (show)
@andyj

Thanks, Terri...I'll check out 'hot tub lung' and look for a local lab that could test the water. Will you kindly forward the site you mentioned? We've had drought restrictions on water usage the past few years in my area; hopefully this wet winter will ease that, and refilling the tub won't be so terribly costly! The suggestions regarding home care regarding water are certainly eye-opening. I wonder if the bio-film can adhere to copper pipes. Any idea on that?

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@andyj Supposedly, all bacteria cannot survive on copper. This can be a new topic to investigate. I have a theory that mac has become so prevelant with most plumbing going to pvc these days.. I do know that there are hospitals talking about installing copper on a lot interior surfaces like hall hand railings, door knobs, etc..to cut down on hospital borne illness.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 2019
In reply to @migizii "It is simply amazing how many things I’ve learned on this site......unfornately, I don’t do most..." + (show)
@migizii

It is simply amazing how many things I’ve learned on this site......unfornately, I don’t do most of them but will start doing some of them as I can bring my self to do them......grieving my old self....accepting my new self! Thanks so much everyone!

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@migizii Hi. Thank you for your feedback. Mayo Clinic (I am sure), and I, are glad to know that this site is helpful to those with health issues. I know it was a Godsend to me when I first found it.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 2019
In reply to @andyj "Thanks, Terri...I'll check out 'hot tub lung' and look for a local lab that could test..." + (show)
@andyj

Thanks, Terri...I'll check out 'hot tub lung' and look for a local lab that could test the water. Will you kindly forward the site you mentioned? We've had drought restrictions on water usage the past few years in my area; hopefully this wet winter will ease that, and refilling the tub won't be so terribly costly! The suggestions regarding home care regarding water are certainly eye-opening. I wonder if the bio-film can adhere to copper pipes. Any idea on that?

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@andyj Andy, here is the link if you are interested in getting your water tested. http://www.specialpathegenslab.com and fill out an application and a chain of command form. The cost of a mycobacterium test costs $150.00. I believe they test for a number of mac species, but I’d ask for specific ones for sure. I will look into that exactly with an e-mail to them. The woman I spoke to didn’t seem to know much about that part, she was basically a receptionist. It costs $30.00 to do an a. pseudomonas test. The cost difference is due to the fact that mycobacteriums are slow growing and they have to baby-sit that sample for weeks. Whereas pseudomonas grows faster and takes very little medium to grow it. I did more reading on pseudomonas because that is the last infection I had. It is found in water and soil, especially pond water. But, it is MOSTLY found on the surfaces of plants and sometimes on the coats of animals. I had given up digging in the garden and was mainly sticking to the pruning of our bushes. I think I will forego that also. (sad face). I was thinking that those of us with the ‘pink slime’ might want to verify that what we have is indeed Methylobactrium; because that would mean we have no others in our pipes. I will inquire to see if that one falls under the ‘mycobacterium’ umbrella or if we can have it individually tested for $30.00.

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1 reply
janovr | @janovr | Jan 22, 2019
In reply to @ginak "@andyj I have also been diagnosed with MAC/MAI. I’ve been having CT scans since 2013 which..." + (show)
@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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@ginak your reply states so many of my symptoms. After 3 years of doing what you are doing, I live a good life. I do suffer from acid reflux and my latest CT scan stated.....nodules due to aspiration.
I feel blessed to only have theses few symptoms .
@janovr

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ann0616 | @ann0616 | Jan 22, 2019

@windwalker Thanks so much for the wealth of information. I have lots of reading to do.

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migizii | @migizii | Jan 22, 2019
In reply to @windwalker "@migizii Hi. Thank you for your feedback. Mayo Clinic (I am sure), and I, are glad..." + (show)
@windwalker

@migizii Hi. Thank you for your feedback. Mayo Clinic (I am sure), and I, are glad to know that this site is helpful to those with health issues. I know it was a Godsend to me when I first found it.

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It has been an excellent resource and I am glad to be able to help, if just a little as I am new in this journey too. Take care!

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cindyrue | @cindyrue | Jan 23, 2019
In reply to @ethanmcconkey "Hi @cindyrue you may have noticed I moved your post to this existing discussion on new..." + (show)
@ethanmcconkey

Hi @cindyrue you may have noticed I moved your post to this existing discussion on new diagnosis of MAC/MAI so that you can read what others have said and how other have approached this disease.

I wanted to thank @egayle187 for responding to your post, and also introduce you to fellow members @windwalker @jkiemen and @margiebanks as they can offer support for handing these lung disease diagnoses.

Back to you @cindyrue what has your doctor said about the disease attacking your bones and digestive system? And as @egayle187 asked, what has your journey been with this disease?

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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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5 replies
cindyrue | @cindyrue | Jan 23, 2019
In reply to @egayle187 "@cindyrue...I'd go with your gut on this one. Your intuition that there is more damage than..." + (show)
@egayle187

@cindyrue...I'd go with your gut on this one. Your intuition that there is more damage than just the bronchiectasis can give you the energy to make changes.
You need a thorough testing and diagnostic experience that National Jewish Hospital or Mayo Clinic can provide. If you are being followed by a pulmonologist, s/he is only concerned with the lungs. Get copies of all your records and CT scans so that whomever you consult will have all the information.
More info on your symptoms would help us help you. Could you describe your journey and symptoms?

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I get out of breath easily and am tired alot. I cough every day and cough up green/yellow stuff. I am trying to exercise on treadmill every day if I can to keep up my endurance.

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irene5 Irene Estes | @irene5 | Jan 23, 2019
In reply to @cindyrue "When i ask dr about the bones and digestive system, he says that is not what..." + (show)
@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 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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2 replies
tdrell | @tdrell | Jan 23, 2019
In reply to @cindyrue "When i ask dr about the bones and digestive system, he says that is not what..." + (show)
@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 ....my heart goes out to you for all you have endured...will your insurance cover going for second opinions....either NJH or Mayo? Tdrell

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