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

Yes against women. Since most people that have it are women. I think if more men would have it, they might work harder at finding treatment. Somehow I feel like we aren't getting a fair amount of attention. I keep saying when someone famous get it, then attention will be paid to it.

My husband takes Musinex to loosen the phlem and he uses an aierbecca twice a day plus his nebulizer. We have never been told why he has fluid in his lungs. I am guessing it is because of congested heart failure or complications of COPD. I have asked what causes it but I was never given a good answer.

Thank you..read the posts.  Still not clear on outdoor pools, oceans, lakes etc... I remembered my conversations...it seems that outdoor pools aren't great as well...probably not as bad as indoor...salt water???

@nick52 and @suzie2017 Hello girls. According to the specialist that spoke at the 2016 NTM Conference in D.C. they said that the Gold Standard for Sputem testing for MAC; is to get a morning sample for three consecutive days. Private practice doctors do not do this, and my doctor at the Mayo clinic does not do this. The only ones that do it that I know of, is NJH (National Jewish Health). The reason they like to do three day sputem samples is to verify that the mac has definitely colonized. I guess the bacterial load can fluctuate daily unless it has a good foothold in the lung. That may be the reason some doctors like to take the 'wait and see' approach. Many doctors feel that a bronchoscopy is very invasive and not neccessary to get the sample. There are exclusions I would imagine.

@128128terry11t , 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.

@jkiemen Good question Jo Ann! Many people get caught up on the physical aspect of having mac and it's treatment. There is always the psychological side as well when dealing with a chronic illness. For me, when I was in the throes of active infection and feeling cruddy every single day; you can't help but constantly think about it. When my treatment plan started to work, I fixated less on it. You DO better, when you FEEL better. I also did a lot of visualization. I told myself daily that I am NOT sick, that is not who I am, I would repeat "I am normal" all of the time. I tell my body that this is unacceptable (to be sick) and that I am not having it! This is much easier to do when you are feeling better verses feeling miserable and hacking up your lungs all day .Jo Ann, I have adopted healthier lifestyle changes that have become second nature to me now; therefore, I don't need to be thinking of the disease so much. Let me know if you decide to try the visualization idea.

@nick52, many mycobacterium researchers disagree with your infectiologist. Many showerheads harbor mac inside of them. That can be harmless to most people, if you have bronchiectasis or a poor immune system; then you are susceptible to it colonizing your lungs if you breathe in the steam.

@windwalker Thank you. Nice summary. IF anyone has anything to add, it all is appreciated. Anybody out there have the filters for the shower??

@nick52, I have tree-in-bud and two small nodules.

My husband first got pseudomonous in July, 2017 and it was discovered through a sputum test. He was put on Cippro for several months but it never really cleared up. It is my understanding that the infection never really goes away. It apparently will flare up and then when you begin to recover it lingers in the background until the next flare up. My husband has 3 different infections and right now they are all well behaved until his next flare up. Patients are susceptible to pneumonia with pseudonymous or any other lung infection. I also think every person is different with lung infections. Symptoms for one person may be different than someone else and what works for one person (antibiotic) may not work for someone else. I hope you soon feel bettter.