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

Diagnosed 6 months ago. Have occasional bouts of bloody cough. Do not have a chronic cough that keeps me up at night but it's obvious to others that I'm constantly clearing my throat coughing occasionally. I'm extremely fearful to go on the protocol & do not want my life to change completely. I live a fairly active life busy entertaining , playing golf and working as a hairstylist in my own business. What is the life expectancy from time of diagnosis with and without treatment?

Posted by @melrosedecosmo, 9 hours ago
Hi Justin, thanks for bringing my post back into the picture. I think it's an important one (obviously ;-), to research. I say this because I use steam cleaners in my home to kill viruses and germs with the goal of minimizing me getting sick. Also, I have eliminated most cleaning chemicals from my cleaning to reduce lung irritations. I made a call to the NTM website education department and had to leave a message. I will call them again on Monday and hopefully get through and will report their feedback.

Rosie, hope you don't mind if I answer on our main MAC Forum .. this is where I found the below info on steam cleaning .. hope it helps you! PLEASE share with us any information you get from NTM on this subject. We certainly want to do our due diligence .. but without going overboard. We have some very ill people on our Forum who just may not have the energy to all that is encouraged .. but at least we can let them know. Hugs! Katherine

Past Info on our Forum:
In terms of steam cleaning .. I also needed to have someone else clean house for me .. the various chemicals REALLY trigger my coughing .. even cough after she is gone until my air cleaners clean up my air! For me .. we downsized to a condo where we were unable to install wood flooring which would have been ideal. So researched and found a Berber type carpet that was based on recycled plastic bottles .. that could be steam cleaned every 2-3 weeks. Also invested in a VERY good HEPA vacuum cleaner .. have done everything I could think of being diligent because I also have 'Reactive Airway Disease" .. react to MANY things .. cough like crazy!
*another poster said: I steam clean my floors weekly

Hi @bruce668 , hope you are both doing ok,how did you get on at the infectious disease doctor?

Welcome, @gggolfs. I moved your message to the main discussion thread in the MAC group. Your fear of the MAC protocol will be familiar to many members sharing on this forum. I encourage you to read through the past messages to learn more. I'm confident other members, like @tdrell @kaystrand @cila @128128terry11t @Paula_MAC2007 @irene5, and of course @katemn, will chime in to share their experiences with treatment and living an active lifestyle.

Heres an article I just found, interesting, have a look. https://www.ncbi.nlm.nih.gov/pubmed/26513209

Dear @gggolfs, (do you have a first name .. so much more personal) .. so glad you found our Forum! It sounds like you are really going through a tough time! A lot to go through! I was diagnosed in 2007 and unfortunately due to lack of knowledge and information that can be found on this wonderful Forum I .. like you .. did not go on the antibiotic treatment until October 2011. I refused to go on the antibiotic treatment until I was diagnosed with a SECOND very serious mycobacterium .. MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES in 2011 when I absolutely NEEDED to go on the antibiotics to get rid of the now TWO mycobacteriums .. including the serious Abscesses second mycobacterium! I then in 2011 was on 4-5 antibiotics for thirty months due to the severity of my condition. I was on: : Azithromycin 250mg/Avelox 400mg/2-Rifampin (rifubutin) 300mg/Amikacin 2ml-inhaled and Ethambutol 800mg.

Due to my previous difficulty adjusting to drugs I chose to add just one antibiotic per week so that I would know which drug was/if caused a side effect. Yes I did have fatigue, sleep disturbance, loss of appetite .. BUT in time I could deal well with my life .. working out and living life! Now I have been “stable” on off ALL antibiotics since May 2014 .. so there IS life after the treatment!

I can only speak for myself .. but my "bloody cough" is a result of a second issue .. Bronchiectasis. As you read through the pages of our Forum you will find that it is common for Bronchiectasis and MAC to go 'hand in hand' .. kind of a chicken/egg thing. In our shared journey in these helpful pages you will find hints and wonderful support! It is important that you seek out a GOOD Infectious Disease doctor who is knowledgeable about MAC .. your constant clearing of your throat could be a sinus issue .. I know I use daily a Mayo Clinic prescription spray .. we MAC patients frequently have Gerds. ONLY a good Infectious Disease doctor will be able to put all these pieces together .. a MAC puzzle and give you good answers. BUT trust me .. THERE is NO worry about 'life expecancy' .. get that out of your mind!! If you get your act together .. read these pages .. educate yourself .. do your 'due diligence' .. act as your OWN best advocate .. life expectancy just will NOT be an issue! Since I went off the antibiotic treatment in May 2014 I have traveled all over the world .. had a ton of fun .. life is full and couldn't be better! Get your fanny in gear Girl! We are here for you!

I would suggest as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side. Please do keep coming back .. you will find really kind supportive people here who will support you through this journey. Sending you a Big Hug in this tough time. Katherine

Interesting indeed, thanks.
Yay...research...

@boomerexpert unfortunatly not for gram negitive, we need gram negitive drugs now! but yes yay research!

My first name is GG

@gggolfs, GG, Welcome, we're glad you're here! Keep coming back .. with any questions you might have or any concerns! Hugs! Katherine