@jentaylor
Same here Jen. Not dwelling, just curious. By the way, I too was diagnosed with
bronchiecstasis years before I was told. It surfaced in records retrieved from a
long ago doctor's office. I was upset that I was never told about it. It was in
records going back to 2000, but it took my Mayo doctor getting those old records
in 2013 to tell me about it. Oh well.........can only take care of the here and
now.
 

@tdrell I don't know why it wouldn't or couldn't be transmitted via human
to human. I don't want people on this thread getting overly concerned with that
tidbit. It was only mentioned that is was a 'possibility' on one of the videos I
was watching.
 

@tdrell Terri,
it is interesting to me that there are three confirmed Alpha-1 carriers on our
thread. I was instructed by my doctor to get my immediate family members tested
for the Alpha-1 gene. I got all of the kits in for them to do it, but they all
refused. I too have not taken the BIG THREE antibiotics for the MAC. I take
others, just not those. I am glad you are doing well enough to not have to go
back in for a year to be checked again. I got the same. I just had a six month
check-up. Doctor said I am maintaining, come back in a year. That is a great
feeling!!!
 

I wonder how may undiagnosed patients are out there. If they were to be diagnosed, then there may be enough concern to start looking at the treatment options,

get funding for more research and improve detection and outcomes.

I just can’t believe this is not more important. Do you think if more men had this condition than women, it would be of greater importance. And by the way,

when I discuss this with the physicians  I am tired of being told that “old women” get this condition.

It would be interesting if Dr Levanthal has some more recent studies and publications with his experience off the Big Three published

Jo Ann

@unicorn Crista,
I am not sure what video exactly it was because I watched so many late into the
wee hours. I want to say it was Charles Daley, MD from the National Jewish
Health videos. It was probably in the second one one the list.
 

@jkiemen Will
post when I can find it again.
 

The next time someone suggests that "old women" get this just say "No, it's just a growing up disease!" 🙂

@jkiemen According to many experts concerning NTM. They do believe it is
under-diagnosed. Many physicians don't even culture sputem when a patient goes
in for a chronic cough. They just tell them it is bronchietis and prescribe a
broad spectrum antibiotic. This happened to me for years until there was so much
lung damage that the doctor had to take notice and run tests. Funding for
research is hard to get because there are so few numbers of us reported. I know
they are trying to get a national registry going. Some data is collected through
Medicare on some known cases. The NTM Initative has started a registry. If
iinterested, you can add your name @ http://www.bronchandNTM360social.org
they are one of the partners that organized that conference in D.C. this
past spring.   I don't think that because this is primarily a
'women's' disease that it is not getting the attention it deserves. It
is considered an 'orphan' disease; which means there are very few reported
cases. Plus, it is just now starting to come to light now that more people
(doctors) are aware of it and more people are getting it.  -Terri
M.
 

I am seeing an ID physician next week and interested in what antobiotics are being used in your case if not the big three. I would like to discuss this at my

appointment.

SO I am gathering as much information for discussion as I can before that

Jo Ann

It’s not bad enough to have the condition but then be called an “old woman” mad be a little mad

Jo Ann