Ksmiles123

Ksmiles123answered the question Been to National Jewish in Denver

Yes, it is a busy place and records can get lost. Give a week or more for your doctors, medical records department to assure you that all records, including cat scans, etc will either be forwarded to NJC or be in your possession. Please keep us posted …

17 hours ago

Bonnie

Bonniereceived the badge Getting started

Earned the Getting started badge!
EddiedesignerMartand 1245 others also received the badge Eddieand 1247 others also received the badge

1 day ago

Ksmiles123

Ksmiles123https://www.webmd.com/digestive-disorders/probiotics-18/rm-quiz-what-do-you-know-about-probiotics

1 day ago

  • MargoI noticed some recent questions about probiotics. My local pulmonary doctor and the Mayo clinic newsletter I get have all recommended the Florastor brand. It is Saccharomyces boulardii. It should not be refrigerated. It's more expensive then some others but I like it. I use it morning and after my evening meal. 1 day ago

  • Ksmiles123Margo,
    Thank you for contributing. We need to hear from other members re: which probiotics work best fro them.
    I have heard of so many different brands over the years.17 hours ago

RCH

RCH

Has anyone used essential oils in diffuser or nebulizer to assist with opening their airway?

2 days ago

  • Ksmiles123RCH,
    Hello! I have heard mixed views on essential oils. I think that the response to oils is on an individual basis. Some patients are hypersensitive to odors, oils - others are not.
    I know that oils irritate animals; they have different body systems...
    I just emailed a friend who knows a lot about oils and will get back to you once she responds.
    Have a pleasant day!1 day ago

  • KandyI would never do these at all!! 1 day ago

RCH

RCHanswered the question How Do you clean your clearance equipment?

Kandy, Thanks for the reply, I saw several youtube videos on cleaning the Acapella device, but the one I have does not come apart. Soaking it is my best bet, but in what is the answer?
KandyoklawomanKsmiles123 also answered the question Kandyand 2 others also answered the question

2 days ago

KC

KCasked the question: Been to National Jewish in Denver

After being off treatment for MAC with bronchiectasis for 3 months my sputum cultures are positive once again. My doc is referring me to National Jewish in Denver for assessment and treatment plan. If you've been can you share your experience so I'll …

2 days ago

KC

KCasked the question: False negative?

Has anyone had a negative culture for MAC in between 2 positive cultures. Makes me wonder if there are false negatives.

2 days ago

Ksmiles123

Ksmiles123

2 days ago

Made Pramana

Made Pramana

Hi! Sorry for not being here for three days! 🙈 My bad. Yesterday I got to do yoga exercise (after two months hiatus). It was good. Hope you have a good day.

3 days ago

Anna

Annaanswered the question Has anyone ever been cured from Mycobacterium abscessus and chelanae?

I don't know if I am cured, but I had abscesses and have not had it since February of 2007. That is very good suppression. Unfortunately, I have other bugs that have proved more difficult
Ksmiles123lea peaC2Kulikand 4 others also answered the question Ksmiles123and 6 others also answered the question

3 days ago

Ksmiles123

Ksmiles123Hello! Some of these articles may be very technical; however, I just wanted to share the increased research being done around the world for members like us.😀http://err.ersjournals.com/content/15/101/192

3 days ago

Ksmiles123

Ksmiles123Hello! Just want to share some research on airway clearance behind done .http://erj.ersjournals.com/content/51/1/1702232

3 days ago

    Kandy

    Kandyvoted on COPD, Bronchiectasis and NTM Webinar Recording

    Gave a thumbs up for a blog post!

    4 days ago

    Ksmiles123

    Ksmiles123Hello! The article below describes the possible adverse mental health side effects of specific antibiotics. It is so important to report any changes in mood while on new medications .https://www.medscape.com/viewarticle/898636?src=WNL_infoc_180718_MSCPEDIT_infd&uac=287092CY&impID=1685072&faf=1

    4 days ago

      P Buckhanon

      P Buckhanonvoted on COPD, Bronchiectasis and NTM Webinar Recording

      Gave a thumbs up for a blog post!

      4 days ago

      Gretchen

      Gretchencommented onUpcoming FDA Advisory Committee Meeting for ALIS

       The FDA's Center for Drug Evaluation & Research (CDER) plans to provide a free of charge, live webcast of the August 7, 2018 Antimicrobial Drugs Advisory Committee meeting. While CDER is making a webcast available to the public for this meeting,...

      4 days ago

      Gretchen

      Gretchen

      Please join me in extending Birthday wishes to our amazing participant Ksmiles123.

      Your birthday is the first day of another 365-day journey. Be the shining thread in the beautiful tapestry of the world to make this year the best ever. Enjoy the ride. And Thank You for all you do in the lives of those who participate on BronchandNTM360social. Your experience and compassion are so appreciated!

      4 days ago

      Gretchen

      Gretchen

      FDA Warns about Consumers being targeted by scams. Please read the following from the U.S. Food & Drug Administration to learn more:

      https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm613418.htm

      4 days ago

        RCH

        RCHI know that most here are interested in the use of probiotics. I have consulted with a functional medicine physician before starting on the "big 3" for NTM. Her recommendation was not probiotics not that they are bad, but will most likely be killed off by the antibiotics. Most here have reported using probiotics with good results so perhaps more get through than she thinks. Her number one concern was opportunistic yeast, she recommended taking a supplement containing Saccharomyces boulardii, stating that it is a "substitute organism" that will not be killed off by the antibiotics but will prevent the yeast and fungus from taking over. She also recommended a diet high in fermented foods such as raw sauerkraut (I'm lucky, my husband makes the best), kombucha, (lucky agina because I love it and I make my own if anyone wants information), and kefer which I have not ventured into just yet.
        I like medical evidence, you all might be interested in this article from PubMed. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3296087/

        5 days ago

        RCH

        RCHanswered the question Saline Solution Therapy?

        I am very new to the world of lung disease, and was blindsided with a diagnosis of NTM and resultant the COPD, and don't have it as bad as some folks with CF. I am using 7% saline in a nebulizer 2x/day, followed by airway clearance device. That along …
        DRaphaelKsmiles123Yanand 5 others also answered the question DRaphaeland 7 others also answered the question

        5 days ago

        Kristen

        Kristenvoted on Upcoming FDA Advisory Committee Meeting for ALIS

        Gave a thumbs up for a blog post!

        6 days ago

        Ksmiles123

        Ksmiles123https://m.youtube.com/watch?feature=youtu.be&v=97a0rCKttlg

        6 days ago

          Gretchen

          GretchenThis is from last year, but the questions remain the same. After attending the World Bronchiectasis Conference and engaging with various patients, I think it is helpful to know what is important to ask the doctors about the disease you have. Read about the other important aspects you should be asking about:

          https://bronchiectasisnewstoday.com/2017/06/05/nine-questions-to-ask-the-doctor-about-your-bronchiectasis/

          6 days ago

          ncares

          ncaresAIT Therapeutics Announces Human and In-Vitro Nitric Oxide (NO) Data Presented at the 3rd Annual World Bronchiectasis Conference. Presentations highlighted the direct killing effect of NO on Mycobacterium abscessus (M. abscessus) and Pseudomonas aeruginosa (P. aeruginosa) as well as the use of the NO generator and delivery system as a potential therapy for M. abscessus complex (MABSC) lung infection

          Press release here:
          http://globenewswire.com/news-release/2018/07/16/1537580/0/en/AIT-Therapeutics-Announces-Human-and-In-Vitro-Nitric-Oxide-NO-Data-Presented-at-the-3rd-Annual-World-Bronchiectasis-Conference.html

          Presentation and Posters here:
          http://ait-pharm.com/

          6 days ago

          Ksmiles123

          Ksmiles123

          Hello! Just returned from the 3rd annual Bronchiectasis Conference.
          A lot is in the pipeline.
          Looking forward to posting the updates over the next few weeks.
          Please stay tuned and ask any relevant questions.

          6 days ago

          Brandon

          Brandon voted on COPD, Bronchiectasis and NTM Webinar Recording

          Gave a thumbs up for a blog post!

          6 days ago

          DRaphael

          DRaphaelanswered the question What are your side effects? Do you take probiotics?

          Hi Teaberry, I'm sorry to hear about your condition. I took a number of antibiotics including Amikacin and Imipenim when I had NTM many years ago. After a while taking the antibiotics I began to develop rashes. I was then told by the doctors at National …
          rplasetKsmiles123Kandy also answered the question rplasetand 2 others also answered the question

          1 week ago

          Hoang

          Hoang

          Curious, can we get a roll call? I am wondering where is everybody from? My name is Hoang and I am from New Orleans, LA.

          1 week ago

          Merry

          MerryLook who showed up in my Facebook feed today, posted by NTM Info & Research! Hi Made!
          https://themighty.com/2016/10/what-it-feels-like-to-have-bronchiectasis/

          1 week ago

          Ksmiles123

          Ksmiles123https://www.webmd.com/sleep-disorders/ss/slideshow-sleep-body-effects?ecd=wnl_spr_071418&ctr=wnl-spr-071418_nsl-ld-stry_1&mb=BV9hlHMDfjVlJNmGRIb%40PxXFE73IOX1cnRFKG4M8oE4%3d

          1 week ago

            Delia

            Deliavoted on COPD, Bronchiectasis and NTM Webinar Recording

            Gave a thumbs up for a blog post!

            1 week ago

            Ksmiles123

            Ksmiles123https://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0022844/?report=reader

            1 week ago

              Made Pramana

              Made Pramanahttps://www.cugh.org/announcements/share-your-stories-field

              1 week ago

              Ksmiles123

              Ksmiles123Hello! Below is a link which reviews the basics of Bronchiectasis. I feel that it is important to review different resource materials periodically . Reviewing materials will remind us of the importance to remain compliant with the suggested therapies.https://www.drugs.com/cg/bronchiectasis.html

              1 week ago

                Brandon

                Brandon voted on Upcoming FDA Advisory Committee Meeting for ALIS

                Gave a thumbs up for a blog post!

                1 week ago

                RCH

                RCH

                I just started my triple antibiotic therapy for NTM, three bugs, M. Avium, M Phlei and one more I cant remember. Even if the drugs work, how in the heck do I know if I won't get it again? I guess that is why lung hygiene will be a lifelong commitment. On that note, I have been looking at smaller portable nebulizers on Amazon, I want to keep one at work as well as an easier size to travel with. Any suggestions on brands?

                1 week ago

                Ksmiles123

                Ksmiles123

                Hello! Just curious- Are you attending the Bronchiectasis Conference this weekend?
                Would like to meet site members who are attending. I am en route at present. I am looking forward to sharing updates with the group.

                1 week ago

                Gretchen

                Gretchenadded a new article Upcoming FDA Advisory Committee Meeting for ALIS

                The U.S. Food & Drug Administration (FDA) has posted a Federal Register Notice announcing the upcoming Anti-Microbial Advisory Committee Meeting for Insmed’s inhaled liposomal amikacin. The committee will discuss new drug application (NDA) 207356, amikacin liposome inhalation suspension, sponsored by Insmed, Inc., for the proposed indication of treatment of nontuberculous mycobacterial lung disease caused by Mycobacterium...

                1 week ago

                Ksmiles123

                Ksmiles123https://www.medpagetoday.com/infectiousdisease/generalinfectiousdisease/73954

                1 week ago

                Ksmiles123

                Ksmiles123https://m.youtube.com/watch?v=bOFfckWv7Js&feature=youtu.be

                1 week ago

                  Kandy

                  Kandyanswered the question Who uses Mucomyst? Please share experiences, thanks.

                  I used it for some years its strong and smells awful but it does the trick. I had the 2.0 I do believe. Some ppl it maybe to strong and really irritate the airways. Now I have hypertonic saline much better than this. There is a supplement that does the …
                  Ksmiles123 also answered the question Ksmiles123 also answered the question

                  1 week ago

                  Kandy

                  Kandyhttps://bronchiectasisnewstoday.com/2018/07/05/non-cystic-fibrosis-bronchiectasis-patients-may-benefit-from-long-term-antibiotics-review-study-says/?utm_source=BRO+E-mail+List&utm_campaign=55f902afa7-RSS_WEEKLY_EMAIL_CAMPAIGN_US&utm_medium=email&utm_term=0_d9df0e1c03-55f902afa7-71479961

                  1 week ago

                    Gretchen

                    Gretchenadded a new article COPD, Bronchiectasis and NTM Webinar Recording

                    We hope you were able to join us for our June 2018 webinar with expert speaker Dr. Charles (Chuck) Daley. We are pleased to offer you the FULL RECORDING of this event. This recording is free and can be accessed at any time.

                    During the 60-minute webinar, Dr. Daley offered an overview of COPD,...

                    1 week ago

                    Gretchen

                    Gretchen

                    The COPD Foundation presented a poster on the burden of cough & phlegm in patients with COPD at the COPD11UK conference this past June. They were awarded the first place prize among all submitted posters! The poster displayed patient reported information from individuals enrolled in the COPD Patient-Powered Research Network. Follow the link to view the full poster: https://www.copdfoundation.org/Downloads/Research/Burden-of-Cough-and-Phlegm.pdf

                    1 week ago

                    Ksmiles123

                    Ksmiles123

                    1 week ago

                      Brandon

                      Brandon voted on Event Alert: An Introduction to Bronchiectasis & NTM Webinar

                      Gave a thumbs up for a blog post!

                      1 week ago

                      Sign In to Participate
                      Or register to become a member

                      Medical Advice

                      It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with bronchiectasis and NTM, please consult a physician before making changes to your own disease management plan.