New Diagnosis of MAC/MAI & I'm scared

@ling123 Thanks so much for your reply. I was so stressed two weeks ago because of the unknown but in a better place now. I have heard of Dr. Ferguson. Are you happy with him? I am seeing Dr. Anguiano. I know nothing about him. They wanted to get me in as quick as possible. I am not sure if he even has any knowledge of bronchiectasis. Like you, I don't have many symptoms right now. Again, thanks for the response. Means so much to me to hear from someone else with this diagnosis.

@windwalker888 Hi Terri. I was very stressed at first, but have calmed down and waiting to see a doctor next week to see where to go from here. I noticed that several people that responded to me are also from Wisconsin. I did not know about water pipes. Where in the discussion can I find the list? I just assumed it was from having measles, whooping cough and being raised on a farm. I live in a home that is nearly 100 years old. Do age of pipes make a difference? Thanks so much for the info.

@jkiemen I am amazed how many people here are from Wisconsin. I have calmed down so much since writing my first post. I am very anxious to see the doctor though and have a plan. I know so little about all of this. Interesting about Monona Terrace. How long were you in the room with the hot tub? It just makes me wonder about so many possible ways that I could have gotten this.

@windwalker888 Hi Terri. I was very stressed at first, but have calmed down and waiting to see a doctor next week to see where to go from here. I noticed that several people that responded to me are also from Wisconsin. I did not know about water pipes. Where in the discussion can I find the list? I just assumed it was from having measles, whooping cough and being raised on a farm. I live in a home that is nearly 100 years old. Do age of pipes make a difference? Thanks so much for the info.

@andyj Hello, and welcome to our group. I know the heartbreak of thinking of giving up something that you love to do. I feel certain that I caught my mac infection from our hot tub. We were in it every night. Hot tubs are a notorious hot bed for mac. This bacteria has become resistant to heat and chlorine. If you cannot give it up; at least use it without turning the jets on. The bubble's effervescence (mist) are what makes the mac airborne and easily inhaled. Also, empty and clean it more than usual. Try Googling 'Hot Tub Lung'. There are many articles about it. You can have the water tested also if it would ease your mind. I have a site of a specialty laboratory that can test it. We got rid of the hot tub after learning more about mac. I also avoid them at any resorts.

@andyj Hi, I see an NTM specialist in NYC at NYU. When I was first diagnosed in 2016, I asked him about going in the hot tub wearing a mask. He laughed, and said he “was never asked that question” and then said he wouldn’t recommend it, but, it’s up to me if I wanted to take the chance. I decided not to take the chance. Thankfully, I never had, and still don’t have, any symptoms of an active infection. I’ve never been on the antibiotics. I DO have lung nodules, which they watch with CT scans yearly, (or sooner if necessary depending on what shows up). I also have bronchiectasis so I use the Aerobika twice a day for lung clearance and I alternately nebulize .9% and 3% saline daily. I guess, ultimately, it’s up to you if you want to take that chance. I was also going to look into salt water hot tubs but never bothered. That might be something you could consider if you REALLY can’t give up the the hot tub. Good luck.

@ann0616 Here is more helpful info.How To Prevent Re-Infection

Causes in the home can be curtailed to some extent. Turn your hot water heater temperature up to 130 degrees (use caution with children in the house as this is a scalding temperature).Take a bath instead of a shower. The splashes and steam from the shower get inhaled. Remember your hot water tank and the shower head are the biggest offenders for harboring mac and/or other dangerous mycobacteriums. Your shower head should be soaked in vinegar every 6 months or less. It can be removed (ideally) and soaked, or a baggie with vinegar in it wire-tied over the shower head while still in place. It should be left soaking for at least thirty minutes.

Change water filters every two months or boil your drinking water. Do not use ice cubes that your freezer makes or drink the water from the door. That water sits in a bladder inside your refrigerator next to warming elements and breeds mac.

Avoid swimming pools, steam rooms, and hot tubs, and facials using steam. (I know, I just sucked all of the joy out of your life – I‘m sorry.) Avoid unnecessary visits to people in the hospital or nursing homes. These two places tend to harbor some of the very bad infectious bacterias like: m. abscessus, serratia marcescens, and most notoriously klebsiella pneumonia. These last three are particularly bad because they are hard to treat and are famous for being antibiotic resistant. There are new drugs on the horizon that seem to be promising for combating these, but have not been released by the FDA yet.

Thanks for your reply and info. I've thought of the mask idea too! Looks like you have the bronchiectasis (which I've just read about for the first time) diagnosis, but not MAC, and that you don't have any symptoms of active infection (what good news!). What prompted you to seek medical attention in 2016? I was bothered by several things which my PC doc sent me to specialist for: shortness of breath when walking uphill, weight loss, and sputum production which required 'clearing' daily and eventually became discolored. Initially I thought that A-Fib was causing shortness of breath, but after cardioversion and medication for A-fib last March, it didn't improve. I too have nodules and tree buds showing on CT scans going back 4-5 years but the doc suggested it might be COPD from 2nd hand smokers. Maybe the infection has been there for years!?!

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?

@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.