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

Could you relate how iron is involved with MAC. Thanks, Flib

@flib It is very complicated but basically Mycobacterium requires iron for normal growth, we dont want them growing to fast or at all. Hope this helps. Heather

@heathert ...Thanks for the heads up on the iron. I will be asking for iron bloodwork next I visit my GP, since I am vegan too I did see this (not sure where) and thought it important.
"Iron is a double-edged sword. If we don’t absorb enough, we risk anemia; but if absorb too much, we may increase our risk of cancer, heart disease, and a number of inflammatory conditions. Because the human body has no mechanism to rid itself of excess iron, one should choose plant-based (non-heme) sources, over which our body has some control." 
Kate

Hello - I have a question about using a Britta water filter. Is there any reason NOT to use the Britta? Pam in Sudbury, MA

I have read that Mycobacterium has an affinity for charcoal which is in Britta filters. We use one in our house but change the filter monthly instead of 2 months that is recommended on the box. I would not get the "extended" filter that is available.

I was told not to use it at all. I didn’t know about Mac liking the charcoal filters but I was told that it takes about 2 weeks for Mac to colonize and therefore if could be worse to use it than just using plain tap water.
Perhaps others have opinions but we got rid of ours and got a reverse osmosis system instead - I’ve still heard concerns even about that but it’s the best we could do without buying plastic bottles of filtered water and creating more recycling/garbage.

@pamelasc1 Hi Pam - I was able to find one study that directly addressed charcoal water filters. Here is a link: https://www.atsjournals.org/doi/full/10.1513/AnnalsATS.201301-013FR.
Also, keep in mind the mycobacteria infects by aerosolized droplets being inhaled, not from being ingested, so you need to decide if using a Britta or similar device for drinking water is a risk you are able to tolerate. In my case, we use drinking water taps which we filter, and I force my husband to change them every month. I figure since MAC/NTM have been found in bottled water as well as tap/municipal water, the risk of having a filter is one I accept in order to have palatable water. I do, however, limit my exposure to water vapors - no hot steamy showers, run the fan, get out of the bathroom and dress in the bedroom while the vapor dissipates... And, sadly, stay out of and away from hot tubs (a social gathering place in our community.) And I use boiled water for cleaning our nebulizers and breathing devices.
By the way, do you have a well, or municipal water?
Sue

Hello, I just started med's for MAC last week yesterday took the next 2. Not a good night and day today. Will it get better. Not sure how long i;ve had it found it on Thanksgiving 2019.

@videlia As you will learn from reading the various threads here, everybody has a different experience with the antibiotics. If you haven't scanned through some of them, you might try - at the main MAC group page (https://connect.mayoclinic.org/group/mac-bronchiectasis/), you can scroll down and find some that interest you. I was on them for 18 months, and gradually my body learned to tolerate. I developed a system of taking them near bedtime because my days were too miserable if I did it in the morning. I also used ginger tea to ease my stomach, ate yogurt and took probiotics to protect my system. Other people develop other strategies for coping. If you experience loss of appetite and unwanted weight loss, you could try frequent small meals or snacks of protein-rich foods like nuts & cheese.
Did you receive any counseling from your doctor or pharmacist on what to expect, how to manage, etc? Were you given a name and phone number to contact with questions? In my case, the pulmonologist wasn't very helpful, but his nurse was wonderful, and always willing to answer questions and/or find information for me.

@alleycatkate It is all so tricky, I use floradix or floravital, which is a liquid iron made from fruit and veg, its great and tastes ok also.