(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@sueinmn, When I ladt spoke to someone at special pathogen lab, the fee was quoted $150 to test for mac & included some other bacterias. There was a separate charge to test for pseodomonas. I don't remember what that fee was. They send one sterile sample container with instructions.

I'm new to this site and appreciate all the input from those contending with this disease! It's my understanding that the MAC exists in the showerhead itself. I was told to dismantle the showerhead once a week and soak it in vinegar. What I also read is that copper kills bacteria. Therefore, I replaced my shower hose and showerhead with copper. The hose is copper infused and the showerhead is solid copper. It's easy peasy to unscrew the head after every shower and drain it and let it air dry, also. I hope this helps! Tonni

@toni1132 Hi Tonni, Welcom to our group - as you already can see, there is a lot of information here, and a lot of links to other resources. I hope you find some answers that help you deal with your situation. Most of us here are trying to figure out how best to live with our diagnosis and still manage to have a life beyond it - we take varying levels of precautions depending on our level of illness and our circumstances.
I don't know about copper actually killing bacteria - at least mycobacteria (NTM). I believe studies show is that copper does not support the development of biofilm, where the NTM tend to colonize, the way plastic pipe does, but not it actually kills the NTM. That said, your cleaning and drying precautions, together with the copper itself, should help keep down the NTM growth to reduce your exposure.
Since NTM is EVERYWHERE, you cannot completely avoid it, simply minimize your exposure with reasonable precautions. For me that means no hot tubs, no long steamy showers, no digging in the dirt in my Texas yard that I share with chickens and wild birds (and avoiding the dust from it by keeping it covered with native plants) - all sources of aerosolized bacteria, which is the big risk. But I still travel, eat out, socialize (but not with sick people)...
Do you know the composition of the rest of the plumbing at your residence, whether it is copper, plastic or iron? Have you set your water heater to at least 140F to help prevent NTM from colonizing there?
Sue

Hi, Sue. Thank you for the welcome. I had read about pipes and the effect of copper. I'll try to find it and share the info. I have all copper in the house I'm in right now. I'm in the process of rehabbing my Chick's Beach house and it, too, is all copper. However, when I went to check progress last week, I saw the plumber did not use copper in the rehab job. He used some plastic pipe. Needless to say, that is not staying. I'm meeting the contractor tomorrow and will enlighten him ONE MORE TIME ! PS.... I will check my water heater temperature. Thank you for that !!
I'm curious. You mention your Texas yard that you share with chickens and wild birds. How in the world do you avoid the "dust"? I have two rescue parakeets and my daughter wants me to pass them onto another home. I was in the hospital this past weekend because I had a lung bleed which was somewhat substantial so I had to go to ER and they admitted me. The on call pulmonologist was in partnership with my usual pulmonologist and he too, was wonderful I asked him about my birds and he wasn't to happy to hear about them, but said he didn't want to end my love affair with them so the very least use a mask when I'm around the. What is your experience/knowledge? These are my two little friends and such good company.
Thank you for all your information! Regards. Toni

By the way.... question, I assuming the answer is no. Does anyone still use a waterpik? I used to use one all the time and now I'm wondering if this is a no no. Thank you for any responses. I'd like to know ….. Toni

@toni1132 Hi Toni, I soak my showerhead in a plastic container of neat vinegar for at least an hour then screw it back on. The American Thoracic Society suggests using neat bleach. But mycobacteria are resistant to bleach so I don't do that.
The research I've seen shows that mycobacteria grow especially well in showerheads -- much better than in taps etc. (Showerheads can have up to 4,000 times the number of mycobacteria than happens in prdinary running tap water in the same house!). So apart from drinking long-boiled water, very frequent cleaning of our showerheads is the best thing we can do. So I use a cheaper showerhead and replace the whole thing twice a year -- the vinegar causes some rusting around the shower holes.
P.S. Copper showerheads might help to control some bacteria but unfortunately won't help much to kill mycobacteria. The main thing is taking the shower head off and soaking it all in neat vinegar frequently.
Good luck, Annie

I’m curious about waterpolo as well as I quit using mine. Does anyone else have experience with them?

I’ve never heard of water polo—-WaterPik?

Has anyone ever developed chronic neutropenia caused by the Big 3 drugs? (Neutropenia = low neutrophils, low white blood cells).

This has really weakened my immune system, and I already have a primary immunodeficiency disease. Apparently it can happen sometimes with these drugs.

Now I've come diown with something new - or a few somethings - on top of the MAC/MAI, Off to the hospital tomorrow to see
Annie

Oops! That was a bad autocorrect on my phone and I didn’t notice it!
Waterpik!!!