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

Katemn....this booklet looks more detailed than the one we got from NTMInfo.org...will have to compare...thanks tdrell

Terri, you will note it is actually meant for doctors .. but frankly as you know I am big into due diligence! If there is something we don't understand in it .. we can google ANYTHING! But after all this time .. there really wasn't anything I didn't get .. just some really nice info! Really once stop shopping .. maybe too much info for a really new person .. but man I sure wish I'd had it early on! It would have helped me SOOO much! It would have answered so many questions I had .. I really just kind of stumbled upon it but certainly wanted to share it! Hugs to you! Big things coming up for you .. right? Katherine

Everything anyone needs to know in a compact, easy read. I'll use it as a kind of primer for them when others ask about my infection.

Katemn l could as an RN of 50 years understand it.....the Q and A did not bring up Ice...was surprised...wonder if studies done on it...
probably too much for new person...l made a file on my gmail "MAC" and put all articles etc into it...as sorta a library reference pile. so at end of this month will hear when appt in January is at NJ....l am hoping..otherwise l will call the scheduling person back....l was second she said on the list for the 10 day appt....meanwhile l am quitting my once a month retirement job so as to not worrying about when l have appts or if l go on the meds and won't feel well. ( I retired from my full time job 10 years ago) and kept this job as a reminder why l retired from full time!!! and l enjoyed doing it
ah well...l digress...will send....TDrell

Dear Katherine and all,
I have a question. I saw on the Jewish Conference videos that there are 10 MAC species and that we should know which "bug" we have. But when i mentioned that to my Pulmonologist this week, she said there is just one MAC species. Which is correct?
David1952

I believe there are multiple. not sure how  many,  but my ID Drs said I had the non colonized kind.  one of my cultures came back with a couple other MAC they said that they usually don't treat, and I believe they did not treat me for them.

David, I've had a tough day so didn't read the whole thing .. but you might take a look at .. a good reputable website! Also, BEANS to your Pulmonologist! What is why I always tell all of you to DO YOUR DUE DILIGENCE!! Educate yourself .. print things out .. take the print out to your doctor/pulmonologist .. unfortunately we sometimes have to educate them to get our best care .. OR get a more knowledgeable doctor .. one who knows our disease!! Sorry .. I'm tired tonight and can't believe a Pulmonologist would tell you that .. thank heavens you found our Forum and are smart enough to do your Due Diligence! Good for you! Hugs to you! Katherine

Nontuberculous mycobacterial pulmonary infections

https://www.ncbi.nlm.nih.gov › NCBI › Literature › PubMed Central (PMC)

by MM Johnson - ‎2014 - ‎Cited by 69 - ‎Related articles
Currently, there are more than 150 species of Mycobacterium and it is likely that more ... complex (MAC), a slow growing NTM that encompasses many subspecies .... right middle lobe due to mycobacterium avium intracellulare (MAI) infection.

Hi Terri, what did you mean about "Ice". That is a GREAT idea to have a file for just MAC and put articles in it as a reference library! Good idea! I use my Word .. copy and paste into it the same way. It is all in "the cloud". Heavens if I ever lost my Word Documents I would lose my lifetime memory at this point .. I sure can't remember all that stuff!

I agree, If you don't get that phone call .. call the scheduling person back. I feel the "nice" squeaky wheel gets the oil! That is just a part of our Due Diligence .. Not being put at the bottom of the List!

Even though you are quitting your retirement job .. look into some type of volunteer thing you can do .. on your own time .. at your own pace. I think it is SO important to keep active mentally and physically .. giving to others also reminds of us of our "gratitudes" .. reminds us there are others SO much worse off. For a time I found myself NOT doing that .. not good. Also there are in most cities something called MeetUp.com .. just google it. When I was in a bit of a doldrums .. my daughter in Hong Kong told me about it! It is all over the world. It is groups of people of all ages .. doing just about ANYTHING you can think of! I am involved in one here in my city called 50+ and it has women from probably 55 to 80. Doing just about anything you can think of .. I could literally be doing something every day of the week! Of course I don't since I don't have the time nor energy .. but they are a nice group of people. Some you like more than others .. but that is life! But the main thing ... is as you wait .. have some fun! Be kind to yourself! Sending you a hug! Katherine

hi Katemn,,,,,,l was referring to the ice l love to use from ice maker in freezer or in restaurants....but as l type this...a comment from the workshop at NJ came back to me...get out the old fashion ice trays and start to use....so l answered my own question.

appreciate your gentle notes re volunteer work.....very very involved with that...from political...to Red Cross...to book club....investment club...and now both grown kids live out west....plane visits only...so to see grandchild and pug have to have plane rides....also have options from snow time here to 3 sisters with houses in arizona....and loved the road scholar first trip l took in May and plan on more,,,and try to go daily to Nu step at the Y...and love to follow stocks and mutual funds and read business magazines,,,also volunteer usher with husband at nearbye community playhouse....the list goes on...but you are very sweet to offer options to prevent me from being an introvert....the one day a month job was really interfering more and more...and when the contract we were working under for the state was cancelled and a new company starts january 1....l knew that was a signal to exit....
but again....l thank you for your concern and feedback....tdrell

david 1952 listen to the microbiologist again. on the videos.....l think he said there were as of july now 171 species under NTM....Mycobacterium Avian complex is the MAC...the most common...but then there are the others such as abcessis.sp..l don't have them memorized....ask for a copy of the c culture from sputum or bronchial washing report...that should identify the type.
MAC is most common tdrell