Delia

DeliaOne of our partners is currently looking to interview patients diagnosed with Mycobacterium avium complex (MAC) lung disease or Mycobacterium abscessus (MAbs) lung disease as part of a research study. If eligible for this study and you complete the interview, you will be compensated with a $125 gift card.

The purpose of this research is to gain a better understanding of patients' experiences with MAC and MAbs lung disease and to identify which signs, symptoms, and related impacts on daily life are the most important and relevant to patients. Your involvement in the study will be limited to participation in a one-time interview. There is no additional follow-up required, and no treatment will be provided.

If interested in participating or learning more, please visit: https://www.patientwing.com/mac-mabs-interview

1 month ago

Ksmiles123

Ksmiles123Hello! Below is a link on the corona virus:https://www.cdc.gov/coronavirus/2019-ncov/about/prevention-treatment.html

14 hours ago

Gretchen

GretchenReminder: Lets Talk About NTM Lung Disease, a free webinar, starts today at 2pm EST. Don’t miss out. If you haven't registered, you still can! http://bit.ly/2UuLHHQ

21 hours ago

JamieS

JamieSHi Everyone
I am representing the Foundation's Bronchiectasis and NTM Initiative at the NIH Rare Disease Day event today. The NIH conference center is full of patients, families, researchers and advocacy organizations all looking to learn more about NIH resources, the state of the science in rare diseases and importantly, to share with each other so that we can collectively move solutions forward. I look forward to reporting back in the next couple of days but if you see this today you can tune in via videocast too right on the NIH website at https://videocast.nih.gov/live.asp?live=34608&bhcp=1


Don't forget to get involved in Rare Disease Day tomorrow by sharing your stories on social media and in your communities. Looking for ideas? Check out https://www.rarediseaseday.org/article/get-involved.

22 hours ago

Ksmiles123

Ksmiles123answered the question I know indoor pools not advised -- is outdoor ok if don't put face in ?

Saltwater pools are harder to find. I think that we all pick and choose what we will take a risk on occasionally. I wouldn’t go in an outdoor pool on a daily basis, but do enjoy an outdoor pool once or twice a summer. I feel that we have so many …
Flutter also answered the question Flutter also answered the question

1 day ago

Kandy

Kandy https://medlineplus.gov/lab-tests/coronavirus-testing/?utm_source=newsletter&utm_campaign=february_26_2020

2 days ago

Lvo

Lvo

Hi everyone, I just got caught up on everyone’s posts for the last month or so. Thank you so much for sharing and providing a lot of good information! I need to check the site every couple of days so I don’t miss anything in the future. 


Well, I’ve been on the big 3 treatment for about five weeks now. I felt fine the first week, but then started noticing that I was feeling very tired. So for the last month or so, I’ve had good days and bad days. On the good days I do OK but I tire out more easily than normal. On the bad days, I feel extremely fatigued for most of the day. What side effects are some of you experienced? 
 

I saw a few posts regarding the dosage of big three that some of you were taking. I never thought to ask my doctor if the dosage is correct on my prescription… My dosage is 600 MG rifampin, 500 MG azithromycin and 1600 mg Ethambutol per day 3x per week. Is anyone taking a dosage like that? 


I also saw a post on effects of drinking alcohol while on the big three… I haven’t had any alcohol since I started the treatment until today. At lunch, I had a small glass of sangria… I was more fatigued than normal this afternoon so I’m thinking that was a reaction to the alcohol perhaps? If so, that will be the last alcohol I have until the treatment is done!





3 days ago

  • NewestOldestClick to View All Comments6 comment(s)
  • Island GirlThanks for this important information. 23 hours ago
  • Ksmiles123You are most welcome!:)19 hours ago
Ksmiles123

Ksmiles123

Hello! Are you getting adequate protein on a daily basis, especially while on antibiotics?https://health.clevelandclinic.org/these-top-4-protein-sources-may-surprise-you/

3 days ago

Kiddo

Kiddo asked the question: I know indoor pools not advised -- is outdoor ok if don't put face in ?

Wondering what advice u got re outdoor pools.

3 days ago

Jessica

Jessica

Well, after some time, I am returning to this site in the hope of getting information. 
After being treated with Arikayce  daily plus three different types of antibiotics for six and a half months, I had to discontinue  it all due to ulceration of my vocal chords and difficulty speaking. Here we are six months later and I believe the M.A.I. bacterial infection has returned due to coughing and just a feeling that it has returned.
This is the first step in starting to think about what the solution might be. I did register with NJH in Denver months ago thinking this might return.
Of course, the big question is are there any new drugs that have come out since last August? It makes no sense to do what I did before or to go to Denver if they utilize the same treatment. Have had two treatments so far- one with only antibiotics  for two years and the second adding Arikayce for six and a half months. This is a stubborn infection and I'm really frustrated with it!
Does anyone have any info on new drugs and have others failed  the treatment process using Arikayce? 
thanks,
Jessica

3 days ago

  • NewestOldest
  • Ksmiles123 Jessica,
    Hello! I am so sorry to read your update.  So sorry to read about your vocal chords and reoccurrence of MAC.   I do not know of any new treatments for MAC since August.  However, I think that NJC May be able to come up w a mixture of different drugs to help you out.  NJC is the #1 hospital for NTM, many years of expertise in this field.  I am concerned about you; I realize how emotionally exhausting this can be- being a patient to keep on keeping on is hard.  Please keep us posted.3 days ago
  • TS
    After many years of Mac treatment, my last 18 months incorporated Arikayce nebulized and Clofazimine in addition to Rifampin and Azithromycin.  Clofazimine is highly regulated by the CDC, but I think it worked best of all the other drugs for me.  Currently no new growth per cultures.  Next scans October 2020.  I also have vocal cord issues.  Sometimes can't even speak.  Was never told about this side effect.  This maybe have been caused by some of the many procedures down the throat and nose.  MAC is very difficult to get rid of.  Keep trying.
    Terry2 days ago
Gretchen

GretchenDon’t forget to Vote! Today we launch the Help GUIDE COPD Research event on COPD360social! Don’t forget to log on and cast your votes for the 25 Research Priorities that are posted for you to rank on COPD360social: https://www.copdfoundation.org/Research/BRIDGE-Project/Help-Guide-COPD-Research.aspx Thank you for your continued support to the COPD Community. Your voice does matter and now you can use that voice and your experience to contribute to the future of COPD research! If you have any questions, please email the COPDPPRN@copdfoundation.org.

4 days ago

Bret99

Bret99

Have you registered for our free webinar this Friday at 2:00
pm EST on NTM lung disease and how it relates to other chronic lung conditions
such as COPD and bronchiectasis? Don’t miss out. http://bit.ly/2UuLHHQ

4 days ago

Ksmiles123

Ksmiles123

4 days ago

ksuzanne

ksuzanneCame across this article for anyone that also has asthma with bronchiectasis. 

https://bronchiectasisnewstoday.com/2018/04/12/more-risk-bronchiectasis-severe-asthma-patients-study/


6 days ago

Ksmiles123

Ksmiles123

Hello! A detailed, technical article on Omadacycline :https://www.nejm.org/doi/full/10.1056/NEJMe1900188

6 days ago

Ksmiles123

Ksmiles123Hello! Great news: The antibiotic below is now being used to treat many of the respiratory infections we face: https://www.nuzyra.com/hcp/about

6 days ago

Kandy

Kandyanswered the question Anyone on here taking montelukast, ICS, or biologics?

I am right now on xolair which is for allergies, since 2003 sometimes with medrol pack my lung dr do not like me on oral steroids, I have budesonide in neb also Flovent inhaler Allergist talking about adding Fasenra to the mix. He said my eosinophils are …
ksuzanneKsmiles123Mari305 also answered the question ksuzanneand 2 others also answered the question

1 week ago

Ksmiles123

Ksmiles123Hello! The link below is a very comprehensive, well written chapter on nutrition and the respiratory patient: https://pulmonarywellness.org/book/book-chapter-9-pulmonary-nutrition/

1 week ago

BarbS

BarbSvoted on My Journey with Lung Disease: Family Connection

Gave a thumbs up for a blog post!

1 week ago

Ksmiles123

Ksmiles123

Hello! Spring is around the corner:); spring is the best time to attempt an exercise program.  I realize that there are many days that you may just not feel up to it; however, it is advisable that we push through to get some exercise on the days that we can in order to improve our respiratory system and overall health. The manual below discusses how exercise is beneficial for respiratory patients: https://lungfoundation.com.au/wp-content/uploads/2018/09/Book_-Better-Living-with-Exercise-Handbook-Oct-2019.pdf

1 week ago

Gretchen

GretchenOne week to go! The excitement is growing to hear from our community about what research priorities matter most to you! The voting will be open for 3 weeks in order to give you time to lend your voice to research and helping to shape the future of COPD research. If you haven’t registered for COPD360social yet, register today so you can participate in this important event! https://www.copdfoundation.org/COPD360social/Community/Activity-Feed.aspx?lastItem=92237


The Help GUIDE COPD Research event begins next week, Monday, February 24, 2020. We look forward to seeing you there!

1 week ago

Ksmiles123

Ksmiles123

Hello! Below is a link on exercise tips for patients with lung issues from the Australian Lung Association:https://lungfoundation.com.au/wp-content/uploads/2018/09/Book_-Better-Living-with-Exercise-Handbook-Oct-2019.pdf

1 week ago

Ksmiles123

Ksmiles123

Hello! Have you considered pulmonary rehabilitation to assist you on the NTM journey? (see link below) Please respond If you have already been through pulmonary rehabilitation and have reaped benefits from a pulmonary rehabilitation program. https://lungfoundation.com.au/wp-content/uploads/2018/09/Factsheet-Pulmonary-rehabilitation-Sep2018.pdf

1 week ago

Ksmiles123

Ksmiles123Hello! Do you have trouble sleeping? The link below offers some suggestions to assist you. I realize that patients are extremely exhausted when they are initially diagnosed and this post may not be relevant.https://health.clevelandclinic.org/try-these-natural-tricks-to-fall-asleep-more-easily/

1 week ago

Ksmiles123

Ksmiles123

1 week ago

Ksmiles123

Ksmiles123Hello! Do you think about food/ medication interactions as you would with drug interactions?  The link below offers some valuable information:https://health.clevelandclinic.org/how-what-youre-eating-could-be-affecting-your-medications/

1 week ago

briarpatch

briarpatch

My husband who is a professional trumpet player was diagnosed with m. abscessus. Because he refuses to take any drugs that can cause hearing damage, his doctor said he will most likely be on imipenem, avibactrim, and tigecycline in addition to some oral drugs. If any one has experience with these particular IV, I would appreciate hearing about how you felt while on these drugs. Also, how long are the infusions and at what intervals did you have to take them? When taking multiple IV drugs, does each infusion need to be spaced apart? I am wondering how many hours will be spent hooked up to infusion bags. Can you imagine going to rehearsals and then playing a 3-hour concert at night while on the IV? His doctor says that he won't be able to tour internationally on the IV so he will have to limit his performances to local concerts and recordings only, but I wasn't sure if these drugs may cause overwhelming fatigue ad affect his ability to function. in general, and if there is even enough time in the day to engage in musical activities at studios and venues. I realize that side effects and experiences with the drugs vary but would still like to hear from others for reference. Thank you so much in advance.

2 weeks ago

Ksmiles123

Ksmiles123answered the question Advice on Nausea Side Effects.

Kim, Hello! Welcome to the site. The link below provides an overview on the NTM drugs: https://ntminfo.org/wp-content/uploads/2018/03/ntm_medchart.pdf I hope that you can drink adequate water and that tomorrow will be a better day. One day at a time. …

2 weeks ago

Kim S

Kim Sasked the question: Advice on Nausea Side Effects.

I have just started taking meds for Bronchiectasis-NTM. 3x Ethambutol 400mgs, 2x Rifampicin 300mgs and 1 x Azithromycin 3 days a week.I feel so sick and that was my first day on them, I have been told I will be on them for 18mths, will it get better?? …

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Happy Valentines  / Galentines Day to all!😍😍❤❤💛💛!  I believe that all of our hearts ♥ are open to assist one another in improving our daily quality of life- I am grateful to be part of this community.   I hope that you have a pleasant day!  

2 weeks ago

Ksmiles123

Ksmiles123Hello! Below is a link for the Industry Panel segment of the NTM/B Patient Conference :https://m.youtube.com/watch?v=MI6_7YihRKk

2 weeks ago

  • NewestOldestClick to View All Comments5 comment(s)
  • ksuzanneYes, a long way to go! I have a copy of my visit notes--summary from the ID specialist. It said I was concerned about MICRO bacteria. Well I guess that's close. 😏6 days ago
  • Ksmiles123Lol,
    Most docs still question? What’s NTM or NGM.... ahhh!4 days ago
  • ksuzanne....ahhh!👍3 days ago
Gretchen

Gretchen

Self care is not just part of having a chronic illness, but should be a part of daily life, to increase well-being and combat depression. Here are 13 Benefits of yoga that are supported by Science. Even 5 minutes of conscious breathing a day could up your contentment. 
https://www.healthline.com/nutrition/13-benefits-of-yoga?slot_pos=article_3&utm_source=Sailthru%20Email&utm_medium=Email&utm_campaign=authoritynutrition&utm_content=2020-01-10&apid=25246343

2 weeks ago

  • ksuzanneThanks Gretchen, I've been trying some Yoga and Qi Gong and it really does help get some kinks out and I do find it refreshes my mind and body. Even when not feeling well there are low-level things that can be practiced and helps with breathing.1 week ago
Ksmiles123

Ksmiles123

2 weeks ago

Ksmiles123

Ksmiles123

Hello! I am posting the link/ video below from the 2019 NTM Patient Conference in response to recent inquiries re: managing side effects from the big 3: https://m.youtube.com/watch?v=mDMLCcT0FDc

2 weeks ago

Gretchen

Gretchen

What do you prefer to do as exercise in the Winter months? I know most of us have experienced a more mild Winter but have you been able to get outside and walk or do you do something else to stay mobile?

2 weeks ago

  • NewestOldest
  • ksuzanneI have horses and help at the barn every night, so I don't have to make a point of going outside or staying mobile. If I didn't have them, I'd probably stay inside all winter because I hate the cold, always have. I am glad for the milder winter here in the northeast as I don't have to dress like the Michelin Man day in and day out.1 week ago
  • Ksmiles123Michelen man, lol.  Yes, I am so glad that it has been a mild winter.  March 1st is next weekend, yahoo!!6 days ago
Ksmiles123

Ksmiles123

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Do you feel isolated throughout the winter months?An interesting article below discusses this topic. I hope that this site offers some support. Can you share others ways you deal with feelings of isolation when you are not feeling well and are homebound. https://despitepain.com/2019/03/03/silent-symptoms-of-chronic-illness-loneliness-and-isolation/?utm_content=buffer2f8ed&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

2 weeks ago

Ksmiles123

Ksmiles123

Hello! I truly realize that it is challenging to feel happy when you are not feeling well. However, the link below offers some good suggestions towards the goal of being as ok as https://www.psychologytoday.com/us/blog/the-right-mindset/202002/15-prescriptions-happiness ossible under varied circumstances.

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Valentines/ Galentines/ Hearts 💕 Day is around the corner; below are 45 self care tips. We all need some extra simple self care pampering when we are not feeling well. Please share your favorite self care remedy is with the group:). https://www.goodhousekeeping.com/health/wellness/g25643343/self-care-ideas/

2 weeks ago

Ksmiles123

Ksmiles123

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Below is some information on the corona virus.  Stay safe.https://medlineplus.gov/coronavirusinfections.html

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Below is the list of recommended vaccinations.https://www.empr.com/home/news/acip-2020-adult-immunization-schedule-updates/

3 weeks ago

Ksmiles123

Ksmiles123

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.



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