mikeylew

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10 hours ago

Ksmiles123

Ksmiles123answered the question Anyone else diagnosed with M. Fortuitum?

https://www.verywellhealth.com/nail-salon-infections-1958950

1 day ago

Ksmiles123

Ksmiles123https://www.webmd.com/depression/ss/slideshow-seasonal-affective-disorder?ecd=wnl_spr_011719&ctr=wnl-spr-011719_nsl-LeadModule_cta&mb=BV9hlHMDfjVlJNmGRIb%40PxXFE73IOX1cnRFKG4M8oE4%3d

1 day ago

    Merry

    Merryasked the question: Anyone else diagnosed with M. Fortuitum?

    My first culture results came back from December bronchoscopy. M. Fortuitum is growing. It is one of the so-called "fast growing" NTMs. Anyone else diagnosed with this one? Were you treated for it? I'm searching my references and don't find much …

    1 day ago

    Merry

    Merry

    Florida NTMers, I am cross-posting this with permission from an NTM support group on Facebook...

    "On Friday March 15th, Dr Daley, expert on NTM from National Jewish Health (NJH) will be the speaker in Boca Raton @ the JCC Sandler Center. Stacy Spooner at NJH satellite in Boca Raton is willing to provide bus transportation to & from Orlando to Boca Raton. There is a minimum of 20 people for this to happen. But of course more are welcome. This is a chance to learn more & ask questions about our horrible disease."

    The contact is Linda Hannold on the Facebook group called MAC Lung Disease Group.

    1 day ago

    Gretchen

    Gretchenvoted on MAC Patient Advisor for Study Advisory Panel

    Gave a thumbs up for a blog post!

    1 day ago

    Gretchen

    Gretchenadded a new article MAC Patient Advisor for Study Advisory Panel

    We are looking for 1 additional (male) pulmonary MAC patient advisor for Kevin Winthrop’s PCORI-funded MAC2v3 pragmatic trial!


    This is a remote advisor position, no travel for in-person meetings. Note that while this is a 5-year project, a full 5-year commitment to participate is not required. We have 4 patient advisors already identified, and are looking for 1 more to round out the panel.

    1 day ago

    Ksmiles123

    Ksmiles123

    Hello! The link/ articles were posted in the recent newsletter. I just thought I would post this valuable information again in case you overlooked it.https://journal.copdfoundation.org/jcopdf/id/1210/3rd-World-Bronchiectasis-Conference

    2 days ago

    Kristen

    Kristen"The Mighty teamed up with Global Genes to ask our communities, “What’s the hardest part about having a rare disease?” Their answers reflect their need to be believed when there is not enough awareness about their condition. They want treatments, and they want the medical and emotional support they deserve."

    https://themighty.com/2016/09/what-its-like-to-have-a-rare-disease/

    3 days ago

    Kandy

    Kandy

    I have a question about the distilled water. I was always told to use that in my humidity cup for the oxygen. I wash my neb cups in vinegar and warm water. Is this not safe enough? I just have bronchiectasis, asthma, chronic bronchitis, emphysema and PH. Reading that article got to wondering about the distilled water. No one has ever said to boil it as it wasn't safe.

    3 days ago

    Ksmiles123

    Ksmiles123Hello! An upcoming program on rare disease advocacy :http://action.everylifefoundation.org/p/salsa/event/common/public/?event_KEY=11249

    4 days ago

      Ksmiles123

      Ksmiles123https://www.healthline.com/health-news/is-flu-season-starting-to-kick-in?slot_pos=article_3&utm_source=Sailthru%20Email&utm_medium=Email&utm_campaign=daily&utm_content=2019-01-14#Flu-season-peak-is-near

      4 days ago

      Ksmiles123

      Ksmiles123answered the question How Do you clean your clearance equipment?

      Chris, Thank you so much for the update on cleaning equipment! Many need to reminded of the importance of cleaning devices. It can be time consuming , but so absolutely necessary. Enjoy your trip bike trip to South Africa- it sounds wonderful! Please …
      ChrisVARCHKandyand 1 other also answered the question ChrisVAand 3 others also answered the question

      4 days ago

      Ksmiles123

      Ksmiles123Hello! Have you had the flu this season or have you been fortunate enough to avoid it?https://www.washingtonpost.com/health/2019/01/11/flu-has-sickened-about-million-us-so-far-half-needed-medical-care/?noredirect=on&utm_term=.c3ce96561ec8

      4 days ago

        QueenHelene

        QueenHeleneanswered the question Does anyone use an AffloVest?

        Thank you all for posting your questions and responses. Although I'm on oxygen 24/7 and have recently been diagnosed with bronchiectasis, I still feel so uninformed. Feel as if I don't know the right questions to get the right answers, so this forum has …
        Ksmiles123Flutter Kandyand 3 others also answered the question Ksmiles123and 5 others also answered the question

        5 days ago

        Ksmiles123

        Ksmiles123answered the question How long to get results on an aspergillus culture?

        Hello! The slow growers can take up until 11 weeks to grow; Tis a long time to await test results
        DiMade Pramana also answered the question Diand 1 other also answered the question

        5 days ago

        Ksmiles123

        Ksmiles123answered the question Are any of you taking the Big 3 medications now? Are you able to tolerate them? If not, what are the

        Hello! I personally do not know anyone who has hearing issues due to arikayce . Below is a list of side effects https://www.rxlist.com/arikayce-side-effects-drug-center.htm I hope that members who have used arikayce respond. All the very best! Please …
        AngieJSummerDKand 3 others also answered the question AngieJand 5 others also answered the question

        6 days ago

        AngieJ

        AngieJ

        Has anyone used the new Arikayce? I will be starting in the next few days. I'm wondering about side effects, limitations and effectiveness. Thanks!

        1 week ago

          Merry

          Merryasked the question: How long to get results on an aspergillus culture?

          I'm 2 weeks out from a bronchoscopy and I know I have more weeks to wait until the NTM culture is done/read, but I think aspergillus doesn't take that long. I was thinking the last time I had it done it was about 2-3 weeks. Does anybody know? Thanks!

          1 week ago

          Ksmiles123

          Ksmiles123

          1 week ago

          Made Pramana

          Made Pramana

          Just found a cool article titled "Modulating airway glucose to reduce respiratory infections". In the article they mentioned "Treating obese mice with metformin decreased P. aeruginosa and S. aureus growth in the lungs. Treatment with oral hypoglycaemic drugs led to a small
          reduction in exacerbation rate in patients with COPD."
          I don't know if it sounds gross but, sometimes when there is no toilet, I cough and release mucus outside, on the ground or water canal. I saw many ants gathered in the mucus and dry it up. (Sorry if it sounds gross). Probably this is the reason why the ants gathered in there because of the glucose content in the mucus.
          https://www.tandfonline.com/doi/abs/10.1080/17476348.2019.1563487?journalCode=ierx20

          1 week ago

          Ksmiles123

          Ksmiles123Hello! Have you been diagnosed with digestive issues? The article below reviews the most common issues .https://www.everydayhealth.com/digestive-health/common-digestive-conditions-from-top-bottom/?eh_uid=76390480&slot=0&xid=nl_EHNLdigestive_2019-01-09_15642049&utm_source=Newsletters&utm_content=2019-01-09&utm_campaign=

          1 week ago

          Ksmiles123

          Ksmiles123Hello! Do you take blood pressure meds? Sadly, another recall :https://www.healthyexaminer.com/expanded-blood-pressure-medication-recalled-due-to-cancer-risk/?utm_source=&utm_medium=email&utm_campaign=20190108-sn

          1 week ago

            Ksmiles123

            Ksmiles123https://bronchiectasisnewstoday.com/2018/12/13/fda-grants-qidp-fast-track-status-zambon-colistimethate-sodium-solution/?amp

            1 week ago

              Ksmiles123

              Ksmiles123https://bronchiectasisnewstoday.com/2018/12/20/mycobacterium-abscessus-autoimmune-disorder-bronchiectasis-patient/

              1 week ago

              • lea peaYou don’t read very much linking both of these diseases so this article was great. Thanks. They both have similarities and at times I find it virtually impossible to know which one is causing my symptoms. I’ve just hit the one year mark for negative AFB by Bronchoscopy, I don’t produce sputum. I’m experiencing some symptoms again, fatigue, deep upper chest pain when sneezing,coughing or laughing. I revisit my ID doctor in 4 weeks. Gee I’ve gone a bit off subject here. Anyway thanks for the article. 1 week ago

              • Made PramanaHi lea pea. Happy to hear that. Wish you the best.1 week ago

              • Ksmiles123LeaPea,
                Hello! Yes, the symptoms overlap and it is so confusing for many patients to identify what us causing wheezing.
                Glad that you hit the one year mark. I sincerely hope that your symptoms are just flu symptoms, not NTM. Good luck at your doctor. Hopefully, you will get in sooner if your current symptoms don’t get better. Feel better soon!:)1 week ago

              Kandy

              KandyThis came into my email today thought would share.

              https://bronchiectasisnewstoday.com/2019/01/02/apulmiq-benefits-bronchiectasis-patients-confirmed-third-party-evaluation/?utm_source=BRO+E-mail+List&utm_campaign=df27e10e5b-RSS_WEEKLY_EMAIL_CAMPAIGN_US&utm_medium=email&utm_term=0_d9df0e1c03-df27e10e5b-71479961

              1 week ago

              Ksmiles123

              Ksmiles123answered the question SIMULTANEOUS NTM & LUNG CANCER

              Ashton, You are most welcome

              1 week ago

              Barbfit

              Barbfit

              I don't know how to put this delicately, so I'm just going to come out and ask this very personal question that is ruining my life. My husband finds it quite funny so he is no help. I have bronchiectasis and I cough a lot with sputum. The cough is strong and comes from my abdomen. This has resulted in me peeing when I cough. Bad enough, but I am now farting when I cough. This is absolutely horrible! The cough is so strong I have no control over it. It's usually very loud as the velocity is so high. :) Luckily no odor (altough at least then it could be blamed on someone else).Okay, I'll stop with the childish humor because this is serious.What am I going to do? How can I continue to work when I risk farting in front of clients and coworkers? I've embarassed myself enough. While we have made great headway in accepting people's handicaps, I don't think farting has made the list. So.... has anyone else had this problem and/or does anyone know what I can do about it. Please share as the cause is real. Thank you. (BTW, we've googled and haven't really found much about it. Other than bad jokes and giving the reason why it happens, but no solution.) My husband calls it coufarting but he is up for ideas on a more creative name for it. You gotta laugh, or you'll just cry.

              1 week ago

              • Click to View All Comments16 comment(s) -
              • Ksmiles123https://www.verywellhealth.com/tightening-your-anal-sphincter-7965881 week ago

              • Ksmiles123https://www.everydayhealth.com/digestive-health/treatment-for-excessive-gas/?eh_uid=76390480&slot=2&xid=nl_EHNLdigestive_2019-01-09_15642049&utm_source=Newsletters&utm_content=2019-01-09&utm_campaign=1 week ago

              • Ksmiles123https://thenutritionwatchdog.com/what-your-farts-are-trying-to-tell-you/6 days ago

              Ksmiles123

              Ksmiles123Good morning! I hope that your Saturday is off to a decent start.
              The article below is a great overview and update on NTM.https://www.news-medical.net/news/20170816/Understanding-the-rise-in-NTM-infections.aspx

              1 week ago

                Ashton

                Ashtonasked the question: SIMULTANEOUS NTM & LUNG CANCER

                Hi, everyone -- Just joined today! I've read this thread HTTPS://WWW.BRONCHIECTASISANDNTMINITIATIVE.ORG/BRO... and would love to know how things are going with Kim. I would also love any input that members can offer for my situation. My lung cancer …

                2 weeks ago

                Ksmiles123

                Ksmiles123Hello! A new product on the market for flu symptoms https://www.xofluza.com/?c=cap-1665ff71690&gclid=COiI1Ljo0t8CFSeVswodPBoBiw&gclsrc=ds

                2 weeks ago

                Ksmiles123

                Ksmiles123Hello! Interesting article below- I love the term” diagnostic odyssey https://www.geneadviser.com/blog/what_is_the_diagnostic_odyssey/

                2 weeks ago

                  Ksmiles123

                  Ksmiles123

                  Hello! Do you take herbs and or supplements? Which ones have worked for you?
                  Many patients spend so much money on supplements and herbs that are not effective .
                  https://nccih.nih.gov/health/tips/topsupplements

                  2 weeks ago

                  Ksmiles123

                  Ksmiles123https://chriskresser.com/changing-habits-you-need-to-shrink-the-Hello! Hello! Some points in the article below are relevant to NTM / Bronchiectasis patients .change/?_ke=eyJrbF9lbWFpbCI6ICJhbm5pZWNhcmRlcjgyQGdtYWlsLmNvbSIsICJrbF9jb21wYW55X2lkIjogIm15NzV5NiJ9&utm_term=changing-the-habits&utm_medium=email&utm_campaign=ck-general&utm_content=&utm_source=klaviyo

                  2 weeks ago

                    Ksmiles123

                    Ksmiles123

                    Hello! Interesting new app.
                    One less item we have to explain to staff why we may need repeat pneumococcal vaccinations if we are under 65y.o.
                    https://content.govdelivery.com/accounts/USCDC/bulletins/223feb9

                    2 weeks ago

                    Ksmiles123

                    Ksmiles123

                    Hello! Happy, healthier and an interesting year to all of you!😀

                    2 weeks ago

                      Elisha Malanga

                      Elisha Malanga

                      Wishing you all a Happy and Healthy 2019!

                      2 weeks ago

                        Gretchen

                        Gretchen

                        New Years resolutions can be tricky affairs, often not sticking to whatever we wish to bring into our path ahead. What changes will you be making and how will you ensure success? Ijeoma Umebinyuo said, "Start now. Start where you are. Start with fear. Start with pain. Start with doubt. Start with hands shaking. Start with voice trembling but start. Start and don't stop. Start where you are, with what you have. Just...Start." Happy Almost 2019 all! To a year of peace, healing and health!

                        2 weeks ago

                        Ksmiles123

                        Ksmiles123

                        Hello! Happy New Year’s Eve day! The article below discusses goal setting. Change cannot happen overnight- setting small goals, little steps leads to greater success.
                        What is one goal related to your physical health that you would like to work on?

                        2 weeks ago

                        Ksmiles123

                        Ksmiles123

                        2 weeks ago

                        Ksmiles123

                        Ksmiles123https://symptoms.webmd.com/cold-flu-map/rm-quiz-difference-cold-flu

                        2 weeks ago

                          Anonymous

                          Anonymous

                          Having recently been diagnosed with bronchiectasis, I’m new to this site. I’m looking forward to reading how others manage this illness (what works/ what doesn’t ). I recently finished the only book I could find with regard to this disease, “BEATING BRONCHIECTASIS HOW I WENT FROM DIAGNOSIS TO FULL RECOVERY IN JUST ONE YEAR”, by Daniel Pecaut. Mr. Pecaut’s story is interesting. In the book he discusses a specific breathing technique—Buteyko. Is anyone familiar with this technique?

                          3 weeks ago

                          • Click to View All Comments6 comment(s) -
                          • Vinny MWelcome, Rudy!2 weeks ago

                          • beanerHi Rudy, My first day on this site. I've had bronchiectasis for more than 20 years and the best advise I can give is to clear your lungs (if you have sputum) three times a day. So important to get rid of the sputum so bacteria has less of a chance of settling in. This is so necessary to help keep your lungs from serious damage over the years ahead of you. Get antibiotics ASAP when infected and please have an infectious disease doctor on your case. I did not have one until 4 years ago and I had gotten more damage to my lungs because my pulmonary physician was not aggressive enough with my problem. Keep those lungs clear and use nebulizing treatments to help you clear more easily. Again keep those lungs clear. Take care1 week ago

                          • Ksmiles123Beaner,
                            Welcome to the site! Great advice. Yes, including an ID doctor as needed is a great recommendation. I wish that I has the discipline to do airway clearance three times a day.1 week ago

                          Delia

                          Delia

                          Hi all, looking forward to the beginning of a new year but I haven’t given much thought to a new year’s resolution. Do any of you have one? If so, I’d be interested to hear yours!

                          3 weeks ago

                          Ksmiles123

                          Ksmiles123Hello! Overeating throughout the holidays can aggravate gastric reflux; below are a few interesting tips to lessen reflux symptoms.https://blog.paleohacks.com/acid-reflux-remedies/?utm_source=mg&utm_medium=mgemail&utm_campaign=reflux

                          3 weeks ago

                          Ksmiles123

                          Ksmiles123Hello! Are you getting enough vitamin D throughout the winter months?https://www.webmd.com/food-recipes/ss/slideshow-vitamin-d-overview

                          3 weeks ago

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                            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.