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Paula_MAC-2007
@Paula_MAC2007

Posts: 131
Joined: Mar 24, 2013

2017 NTM & Bronchiectasis Physician/Patient Conference

Posted by @Paula_MAC2007, Feb 15, 2017

From NTM Info & Research, Inc.

2017 NTM & Bronchiectasis Physician/Patient Conference

Join us at a day-long CME-accredited conference on nontuberculous mycobacterial (NTM) lung disease and bronchiectasis, on Friday, May 19, 2017 at Georgetown University in Washington, D.C.

Sessions will cover a range of important topics on these two diseases taught by key opinion leaders from around the world, and the day will also feature Patient and Industry Panel Discussions.

Registration is FREE and breakfast and lunch will be provided. Space is limited so register early to reserve your spot!

Click here to register for the conference!

http://campaign.r20.constantcontact.com/render?m=1101618704496&ca=a3bfadb1-a1c9-412a-9f55-a293ef414355

Click here to view the agenda and faculty.

https://www.ntminfo.org/images/media/News/conference_flyer.pdf

REPLY

@Paula_MAC2007, this conference is quickly approaching. Are you attending?

@colleenyoung

@Paula_MAC2007, this conference is quickly approaching. Are you attending?

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Sorry, I have not been corresponding, but am reading comments when I have time.
Colleen Young asked if I was attending the NTM Research organization’s conference in Washington DC on Friday, May 19, 2017 — Yes, my husband and I are going. If given the opportunity, I hope to advocate for (1) a national registry of info re all patients and (2) more and better research for an inhaled antibiotic treatment. Is anyone else attending?

Greetings everyone! You guys sure have been quite on this forum lately. I know, you are missing Katherine. I miss her too. I have a feeling she will be back with us before too long. Meanwhile, lets continue to send healing energy and prayers her way towards her recovery. I have exciting news. I will be attending the NTM Conference in D.C. this month. I look forward to learning the latest about our disease and promise to share what I have learned. If any of you have something to share, or just want to check in with us, we are all still here. Hugs all around – Terri M. ( Katherine’s surrogate hugger ).).

Paula and Terri M – I will also be attending the conference – it might be nice if we could find each other and sit together? What do you think? Pamela ( I live in Sudbury, MA and will be flying down and staying with my daughter in D.C. and will be taking a cab or Uber over to Georgetown.)

All MAC ladies…..I emailed the director of the program and asked …they are videoing it….those going if it is possible to ask an AV person how long before videos will be ready and where it/they can be seen.thanks terrid

@colleenyoung

@Paula_MAC2007, this conference is quickly approaching. Are you attending?

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Hi Paula. Yes, I am going to the Conference in D.C. We are staying at The Henley Park Hotel. Will be there Thurs-Sat. Will private message you my phone number. That would be great to meet up. – Terri M.

@pamelasc1

Paula and Terri M – I will also be attending the conference – it might be nice if we could find each other and sit together? What do you think? Pamela ( I live in Sudbury, MA and will be flying down and staying with my daughter in D.C. and will be taking a cab or Uber over to Georgetown.)

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Hi Pam! Yes, my hubby and I are going to the conference in D.C. Will be staying at The Henley Park Hotel Thurs – Sat. Will private message you my phone number. It would be great to meet and possibly sit together. – Terri M.

@dalec

I’m looking for a Terry from SC that i met at NTM Conference on Friday. I had written down your doctor’s name @ Mayo and can not find him on the website. Could you give me his info again please ?

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Hi Dale,
I believe you might be referring to Terri M. who goes by the username @windwalker on the Connect forum.
Terri, did you see this post by Dale? Hope you two can connect here on Connect 🙂

PS: Thanks Terri for telling people at the NTM Conference about Mayo Clinic Connect. How was the conference?

@dalec

I’m looking for a Terry from SC that i met at NTM Conference on Friday. I had written down your doctor’s name @ Mayo and can not find him on the website. Could you give me his info again please ?

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Would also love to hear any news from this recent conference!

I’m looking for a Terry from SC that i met at NTM Conference on Friday. I had written down your doctor’s name @ Mayo and can not find him on the website. Could you give me his info again please ?

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?

@colleenyoung

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?

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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)
 

@colleenyoung

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?

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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.
 

@colleenyoung

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?

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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.
 

@colleenyoung

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?

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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.

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