Welcome @beatitnow, do you have a first name .. so much more friendly! I would suggest you try to ready the past pages of our Forum .. my thinking is we will read a 300 page book for pleasure .. we sure will read 30 pages of the Forum to understand our shared disease better! Make notes as you go .. personally I cut and paste to a Word Document .. then feel free to ask questions .. we have a wonderfully supportive community who will jump in and share their experiences .. they are just great! I just wish they had been here when I was diagnosed in 2007 .. wonderful people!

@beatitnow, when you read the back pages you will read .. it is my understanding that after the antibiotic treatment the mycobacterium is still there but is not "colonizing/growing" .. you become "stable" .. but not really "cured". That is why you need to have follow up appointments with your Infectious Disease doctor that include at least: a sputum culture/Xray/pulmonary tests. At least for me it began with quarterly check up .. lengthened to semi annual .. then to annual. With the understanding that YOU know your own body best AND you call for an appointment sooner if you feel something is wrong..

@beatitnow, we are a public Forum that is how Mayo Clinic Connect works best .. we all pitch in to help and support each other .. sharing tips, ideas of what works or doesn't work .. you will find this works just great! We are ALL on this shared journey together .. keep coming back .. we will be here for you every step of the way! Hugs to you in this tough time! (AND you WILL BEAT IT!) Katherine

Katherine, my name is Amy. Thank you for all your wonderful information. Has your MAC infection come back at all? If not, did your doctor wait the usual year after a negative sputum sample, or did you stay on meds longer after a negative sputum sample? Thank you!!!

@beatitnow .. Hi Amy, DEFINITELY .. I had to have a full 12 negative sputum samples .. without a positive one in between before I was taken off the meds! Then I was followed with quarterly sputum samples, Xray, pulmonary tests until my doctor felt I was well enough to go to bi annual and then annual. It is really important to go through the full process .. those mycobacterium are sneaky critters just lying in wait to pop up .. that is why it is so important even after you go off the meds to exercise .. eat healthy .. stay positive and do your aftercare appointments. Hope this helps you! Just remember we are all here on this our shared MAC journey! Hugs! Katherine

Are only the people who have pulmonary carcinoids getting MAC? My small intestine is affected. I asked my doctor if I needed to watch for MAC and he was totally thrown by my question.

<br><br><br><br><br>No. MAC is an opportunistic mycobacterium that attacks people with weakened <br>immune systems due to various disease situations. <br> <br><br>

@windwalker, good answer Terri, thank you! Personally I also think someday they are going to find there is a genetic factor. Why? Because BOTH my husband and I had compromised immune system .. have lived together for all these years under EXACTLY the same conditions .. I got MAC .. he DID not .. go figure! That is WHY I feel confident there is a genetic component ..

PLUS I have had some MINOR genetic work done and have found that I have the Alpha-1 Antitrypsin Deficiency

The alpha-1 antitrypsin (AAT) protein protects the body, especially fragile lung tissues, from the damaging effects of a powerful enzyme called neutrophil elastase that is released from white blood cells. In AAT deficiency, a genetic mutation reduces levels of the protective protein in the bloodstream. AAT deficiency can lead to chronic obstructive pulmonary disease (COPD), specifically emphysema, and liver disease. Smoking, which can inhibit what little AAT protein an affected person does have, increases the risk of lung disease.

I did not smoke a day in my life .. STILL got MAC! Hugs! Katherine

<br><br><br><br><br>You and I have discussed the Alpha-1 deficiency before. My mother died from <br>it at the age of 58. I am a 'carrier' of the gene and supposedly have enough of <br>the protective protein in my lungs; but my level is super close to the cusp of <br>not having enough. I can't help but wonder if it really isn't enough. You know? <br><br> <br><br>

It's no longer opportunistic...now hits folks with normal immune system...one of the many reasons research more urgently needed (not that it wasn't before, but now anyone can get it...)

<br><br><br><br><br>Really???! That's not good!<br> <br><br>