New Diagnosis of MAC/MAI & I'm scared

@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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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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@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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@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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@andyj ....I vaguely recall hearing at NJH ...NTM workshop that copper pipes don’t form the bio films.....Also if one has a well vs municipal water.......usually there is protection from NTM.tdrell

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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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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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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!

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@andyj Before I had the nodule removed in 2016 no one mentioned MAC. That diagnosis came from the surgery at NYU. My pulmonologist told me about the antibiotics and asked me what i wanted to do. That’s when I began seeing Dr. Kamelhar in NYC. He ordered the sputum induction 6 months later. After the 3 days of samples, it still showed evidence of MAI/MAC. He then sent me for a swallow study, which showed everything normal and no aspiration. He doesn’t recommend the antibiotics. I have had no other symptoms since the original diagnosis in 2016. My most recent CT last week shows everything still the same. Nodules are “waxing and waning, some evidence of inflammation/infection consistent with NTM, bronchiectasis and COPD”. I look at that as good news. Although it’s not gone, it’s not any worse. I still feel good and continue to do my lung clearance twice a day and nebulize the saline once a day. I’ll see him again in the spring. I’m sure he’ll send me for additional sputum sample and we’ll see from there. The nodules are there, waxing and waning, since my first CT scan in 2013. Good luck on your journey with this. Everyone remains in my prayers.
Gina

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