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

I have a wate fall on.my shower head. Do you think that is okay. I cant get down in the tub, way too low...

Why aren't they giving you ethambutol and rifampin....less side effects

@nick52 My answer is similar to Ling. I also had no symptoms that I knew of, except constant throat clearing, excess mucus, coughing at night. In 2008, I was told that was from acid reflux. In 2014, I was diagnosed with lung nodules, also told from silent aspiration from acid reflux. In 2016, I was on blood thinner for aFib and I coughed up blood several times. At that time, they saw a large nodule on a CT scan that they wanted to biopsy. When I had the nodule removed, that was when I received my MAI and bronchiectasis diagnosis. I still have the same symptoms I originally had and no others. I, also, have not taken any antibiotics. I use the Aerobica twice a day to clear my lungs.

@ginak thanks for your response. Really appreciated! What is aFib ? According to the radiologist this summer who did a video deglutition xray in the fall of 2017 aspiration cause bronchiectasis. Have you considered taking probiotics. It would be great if we

can make our own research by taking the same probiotics.  I had a lot of mucus and I do not have any anymore.  Is it because of no MAC or is it because of my milk thistle and probiotics.  No more mucus, no more coughing nothing! My breath is very normal. I

am very careful on acidic food also since my doctor said that acid reflux can cause aspiration to the lung.  It could be the cause of our Bronchiectasis which is why we are more apt to catch bacteria or organism.  I never had blood but all the other symptoms

you had.  Your story sounds like my story except blood.  Aerobica is it working well? I do not take anything to clear lung right now because I have no symptoms. I swear by those probiotic of Dr Ohirra’s.  I was so miserable with clearing my throat all the

time. I believe  God guided me. thanks Gina! I will google aerobica! Nick 52

From reading many of the posts, I think MAC is the strangest infection I have ever heard of. Some people don’t have symptoms, some do, some people don’t take the strong antibiotics but take probiotics or milk thistle. Sometimes symptoms go away on their own. From what I am learning, MAC does not seem serious to most people. We are still waiting for an appointment with the Pulmonologist. Maybe he does not think it is serious either.

@suzie glad you will see the doctor.  Ask him if a part of the population have MAC without symptoms and live with it without problem?  Ask the Dr if an acid reflux stomach can get by aspiration to the lungs or can get to your lungs somehow if it is bad? 

Ask him if bronchiectasis can be caused by aspiration to the lung?

My doctor confirmed all these question to me by a Yes!

Good luck! Things will go well! We will send you good energy! Nick 

@suzie2017 Suzie, you are right about this. I'm not a doctor, but I have done fair amount of reading on it. MAC is everywhere but for majority of the population, the existence of these bacteria is not a problem. They are opportunistic bugs that most likely attack those whose immune system is in one way or another compromised by either chronic ailments or temporary ones. Also, if you have bronchiectasis although otherwise healthy, excess mucus produced on daily basis due to bronchiectasis can trap these bacteria and cause infection. Or if you have GERD, the bacteria can be aspirated into your lungs and cause infection. Because the causes are varied, the MAC infections are manifested in different ways for different people. For that reason, we all take different routes as far as treatment is concerned. Some of us, myself included, do not need or choose not to get treatment with strong antibiotics either because intolerance or because the condition resolves by itself without them. When I first came to this group, I was shocked how many different stories there were. Some had almost no similarity to my own. But at the end of the day, we are all facing the same bacteria and doing the best we can to fight them. This forum is a very educational and eye-opening place to be to get and share advice, pointers and support.

Nick, I will add your questions to my list. Do you think it is strange we have not heard from the doctor even though I sent him a message on Sunday asking if we should come in to talk about my husband’s new infection. We have heard nothing so far.

@suzie2017, Suzie, I have found that many pulmonologists in private practice are clueless when it comes to mac infections. You would be amazed at the number of them who have never even heard of it. They get lab results back for a positive infection and then prescribe a 10 day run with a broad spectrum antibiotic. They don't even have a suseptability test run to see which antibiotics will work. I am happy to see that you are reading and learning all that you can about this. Knowledge is power! Yes, this is a very freaky bacteria that we are dealing with. The fact that it constantly morphs; makes it all the more allusive. Please keep us posted on your husband. If you would, tell him that we care and are here for him. (And you also.)

@suzie did you had an appointment today with him. Are you talking about your family doctor? Have you talk to a doctor about his infection (MAC) Maybe you should call his office because he may not have opened his email.  Nothing is better then a phone call.

 The system here is different then the one in Canada. Windwalker knows more than i do about the American system.  Home we can’t email our Dr.  Maybe you should say instead we want an appointment with you regarding my husband lung infection.(don’t say “maybe

we should” be firm “we want “.  

Point of clarification Suzie  milk thistle is to help clearing the mucus in the throat and probiotic is to give your body good bacteria to fight the bad one. It will keep the immune system stronger to fight infection. XxNick