2017 NTM & Bronchiectasis Physician/Patient Conference

Hi @Paula_MAC2007, @dalec, @windwalker, @tdrell and @pamelasc1,

We're so anxious to hear your feedback about the conference. What was your most significant moment? What did you learn? Did you meet each other?

Hello All.
      Finally rested up from the trip. Was
delighted to meet Pam from our MAC community.We hung out at the conference.
Mainly, I was happy to see that researchers are anxious to learn more about
curing our disease. They presented an over-all look at our disease which was
nothing we haven't already posted about on this forum, such as the symptoms,
life with this disease, ways of catching it, ways we try to prevent getting more
mycobacterium in our systems, etc. The real gist of the conference was that they
want to form a registry of people who have MAC. They need real numbers affected
by this disease in order to get funding for research. Right now we fall under
'orphan' or 'rare' disease; therefore it doesn't get the attention or funding
that it deserves. They want us to register at http://www.bronchandntm360social.org I
have done so already. They also are looking for people to be in their
clinical studies. They have new drugs coming out, some are in the 'off lable'
phase which means they are still in clinical trials. The new drugs on the
horizon seem to be the nebulized types. Makes sense, deliver the drug directly
where it is needed - to the lungs.
     They had a doctor from Mayo (Dr Askamit) and also
a dr from the National Jewish Health, as well as other specialists around our
country. They had doctors from the U.K., Austalia, and a few other countries.
Collectively, they all agreed that higher doses for a longer period proved to
work best for treating MAC. National Jewish Health claims that they have 'cured'
a few cases where it hasn't returned at all. Did learn that the 'absessus'
variety of MAC is the worst. It is the hardest to cure. (prayers for Katherine).
Said that Tobramycin + another antibiotic for two weeks was an excellent
treatment choice. That is what I am on but for a longer dosing time. There is
much more on the meds used overseas and on the horizon. Text me separately if
you want more info. If any of you are taking any 'Novartis' drugs and need help
paying for them, they offer 'Novartis Compassion' to get drugs to you at no
cost. Clofazamine seems to be the golden drug of choice.
Most insurance will not cover it, but National Jewish Health has been known
to push it through.
     They said that most labs do not break down the
exact SPECIE of MAC, which also makes it harder to treat. Which I is why I only
go to research facilities for this disease, I am hoping they do that step. They
are trying to change the way places like Lab-corp etc., culture MAC
sputem. Plus, YOU can demand that your lab do that. It may cost extra and
insurance may not cover it. (it would be worth it to me to pay out of pocket).
We should all be diagnosed for the 'Disease' MAC by using THREE separate sputem
tests, because sometimes bacterial loads can change from day to day, and the
load determines if it is at disease status and need treatment. They suggest you
collect your specimen from a deep first morning cough from three consecutive
mornings and refridgerate the samples until you can get them to the lab.
They will keep up to a week. You will need to fib and tell the lab that you just
coughed it all up an hour prior or they will not take the samples.
     Learned that some MAC infections are localized
sometimes in the beginning of the disease and can be surgically removed with a
new technique that has 0% death rate and very low issues afterwards and does
cure the MAC.
     They stressed the importance of keeping your
nebulizing equipment clean by use of boiling or using bottle sterilizers. Clean
countertops and door handles etc. DO NOT USE BLEACH. Bleach actually
concentrates the MAC so don't use it. Use vinegar for surfaces and can fill
a baggie with it and twist tie it on your shower head for a soak every six
months. LUNG HYGIENE - super important. Recommended nebulized hypertonic
saline twice a day. Bad news, water filters of any kind only work for the first
two months, then they actually increase the MAC concentrations! Recommended
turning hot water heaters up to 120 or higher, they like them at 140. That the
tanks tested the highest for harboring the mycobacteria.
     Learned that regions with the highest incidence of
MAC are New Hampshire (had the most), Arizona (where I caught mine), Hawaii,
Florida, and California. Now you know where NOT to vacation. Just kidding. (sort
of)
     There was talk about gene sequencing,
immunoglobulins, and other things that went over my head. This conference will
be out on video at some point, for those of you interested. I am sure I left out
some things, but your questions may jar my memory. I also left some things out
because this post is getting lonnnnng.
      -Hugs     Terri M.
(Windwalker)
 

I knew I was forgetting something important! The possible reasons we get
re-infected! They said that re-infections occur because we are getting those
bugs from the same sources as before, i.e. if your hot water tank is full of
them, then you are continuously being exposed to the bugs. They also can
mutate over time and an antibiotic that worked before, may not work now. That is
what frustrates the medical community. The number of species keeps growing due
to mutation. I am sure doctors think they are chasing the wind. ALSO:
species of MAC differ from region to region. So, when one person
swears by a certain antibiotic that worked for them in Hawaii, it may not
work for someone in New Hampshire. Avium Bacterium is the most prevalent specie
in the U.S. but, there are now sub-species of that! Then, other strains are more
prevalent in other countries. So, we are battling a very tricky monster here.
Personally, I feel like genetics need to be unlocked in order to figure out why
we cannot deterr this beast while others can.
 

I'd like to add that my biggest boost from attending this conference was
having my husband hear a lot of what I say about MAC to him verified.
I don't think he really ever understood the severity and suseptibility and
fatigue that this disease entails. For years he thought I was exaggerating
things.
 

Colleen, my husband and I are still traveling around Virginia & North Carolina for the next few days. I'll post more when I get home in June. I did get to meet Dr. Aksamit from Minneapolis Mayo -- my pulmonologist said to say 'hi' to him since they know each other.

@windwalker, I echo your comment that you don't think your husband "...ever understood the severity and suseptibility and
fatigue that this disease entails." Straight from my mouth! For me, the ongoing fatigue has been the most debilitating, especially for a high energy person.

Amen sister! Running out of gas half way through the day blows me away.

I'm exhausted every day! Sometimes, I wake up, take a shower, then feel as if I can't do another thing until I lay down again!

Believe me, I feel you.......
 

I hear you girlfriend! I was always a high energy person. This totally goes
against my grain. I never complain and try to keep on going like normal. I
pulled it off for awhile, but now I listen to my body. It used to bother me that
I couldn't keep up in many aspects, even everyday life things: now, I accept it.
Hubby had not been so accepting. The more I sleep, the more he gets
it.......