Bonnie, I had the same scenario with the repeated pneumonias. Only, I think now, that I may have have some kind of mycobacterium infections that went undiagnosed. None of the doctors ever did a sputem culture when I had 'pneumonia'. It finally dawned on me that something wasn't right because it just wasn't normal to be sick like that so often.

I live 21 miles north of you in Bluffton near Hilton Head. We should do lunch some time. This is the most comfortable climate that I have ever lived in. I am close enough to the beach that the soil is very sandy, therefore, rainwater drains away quickly and it never feels terribly damp to me. The winters are cool, but dry. I grew up in Virginia. The weather there was killing me!

Hi Jo Ann, most well water is free of MAC, hopefully your's is. If you could tell me what region you live in, (state & county) I will relay it to the researcher along with mine. His name is Joseph Faulkinham, III. He is at Virginia Tech. He has interesting clips from the 2017 Conference on YouTube. They are lengthy, but interesting. That is where I saw him say that he would be interested in knowing where this pinkish orange bacteria can be found. Thanks! Terri M.

Hi Sophie! Welcome to our forum! My experience was that I became extremely ill with MAC in March of 2007. I was told I had bronchitis, was treated for that, did not get better, then I was told I had pneumonia, was treated for that, still did not get better. Finally was diagnosed in August! It took five months for someone to finally give me a sputem test to see what I actually had! Then they did a bronchoscopy to make sure. I knew I had something God aweful back in March because I had pneumonia many times in my life along with other lung infections. None of those felt quite like this one. This one felt different, I knew it was something bad.

I live in Southeastern Wisconsin in Walworth County, rural with well water. The post office is Elkhorn Wisconsin near Lake Geneva. When I got ill, I was living

in the City of Delavan Wisconsin which is city water etc.

JO Ann

I wanted to let you all know, in case your MD’s have not checked. My ID that I saw for the first time, did IGG, IGM antibodies and my IGG came back low. I just

found that out myself by looking at my results. The MD has not discussed it with me yet.

I am wondering if any one else had them done.

JO Ann

I was diagnosed in June 2015 after having pneumonia. I had a bronchoscopy because I could not produce any sputum and that is how is was discovered. I currently

seen by a pulmonologist at St Luke’s.  They said it was MAI. I then had a biopsy of a nodule that also had MAI. I currently have not yet been treated with the 3 Antibiotics.  I did see an Infectious Disease MD on July 7, 2017 and he had me do some labs to

see if I had any Immune Deficiencies.

One of the 3 components came back a little low and have not yet been able to discuss the implications of that. But then when you go to the internet and looks

stuff up you can see all sorts of scary things. So, I hope to find out more about that..  When I was diagnosed, I was living in a condo with city water but one of the MD’s said that MAI is mostly from soil. So maybe I inhaled some dirt with it.  I really don’t

have much of a cough but usually feel like I have more post nasal drip and throat irritation type sensations.

Where are you being seen? How long have you been diagnosed and most importantly, how are you doing?

The ID person told me this area has allot of cases.

Jo Ann

I am being seen at Froedtert. I was diagnosed with mac last year in july by my pulmonogist. I am still on the "big 3", i had two areas in my lungs, one is gone and the other spot is still there. Well now i am seeing an infectious disease doctor, as a matter of fact, saw her today. She states that my pulmo doc sent my sputum test to denver. They are waiting for results to come back, which should be in about six weeks.once results come back, we will decide on a different treatment. I feel great, work every day and you would never know i had this nasty bug....

Thanks for sharing with me. How did you find out you had MAC. Are you having any side effects from the meds. My doctors keep telling me to hold off. Were you

having allot of symptoms?

They are telling me they want sputum to send to Denver to the National Jewish Hospital Center where they have the bigger center for this. I can’t seem to produce

any sputum.

Do they have allot of patients they follow there with MAC?

Jo Ann

Hi Jo Ann. I am not sure who you are directing this question to. In the future, it would work better to highlight the @ address of the person you are responding to and mention their name. Do you know how to log in to get onto the forum properly? I did it for the longest time just replying straight out of my e-mail. It doesn't work well that way. Let me know if you need help with that.

Now, to answer your questions: I went five months with several misdiagnosis' before a Pulmonologist at a research hospital found the MAC. My tests were by sputem and bronchoscopy. My doctor at the Mayo said he doesn't believe in putting patients on the BIG THREE meds right away on their first infection because he said 90% go away on their own. He'd rather watch the infection a bit before deciding to treat. That is because those drugs they use are hard on the body, especially the liver. A good pulmonologist should have the means to administer an inhalation method using 10% sodium chloride to force the mucous (sputem) up and out of your lungs to get the sample. National Jewish Health is one of the best institutions to have your sputem tested properly. They are also among the best for treating MAC. I hope this all helped. Feel free to ask all of questions you want, there are a lot of knowlegible people on this forum.

Terri M.

Jo Ann, I meant to add that just because MY doctor doesn't believe in treatment right off the bat with the BIG THREE drugs on first diagnosis, doesn't mean that is the absolute course. Doctor's opinions vary on that. This disease is kind of elusive in that many doctors are still trying to figure it out. My doctor doesn't believe in immediate treatment, whereas others may feel like treat it before it damages too much lung tissue. It really depends on the degree of infection I think.