BronchandNTM360social welcomes new member Kmas who joins 3,852 current members of our community. Weโ€™re glad you're here!

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/

4 years 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.

4 years 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

4 years 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.4 years 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.
    Terry4 years ago
Gretchen

GretchenDonโ€™t forget to Vote! Today we launch the Help GUIDE COPD Research event on COPD360social! Donโ€™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.

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4 years 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? Donโ€™t miss out. http://bit.ly/2UuLHHQ

4 years ago

Ksmiles123

Ksmiles123

4 years 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/

Severe Asthma Patients with Bronchiectasis at Increased Risk of...

Patients with both severe asthma and bronchiectasis are at more risk of frequent hospitalization, gastroesophageal reflux disease, hypersensitivity to nonsteroidal anti-inflammatory drugs, and higher blood eosinophil counts than patients who only have severe asthma, a study shows. The study...

4 years ago

Ksmiles123

Ksmiles123

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

4 years 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

NUZYRAยฎ (omadacycline) | About

NUZYRAยฎ is a modernized tetracycline designed to overcome the two most common mechanisms of tetracycline resistance. Please see Important Safety Information and Full Prescribing Information.

4 years 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/

BOOK – Chapter 9: Pulmonary Nutrition

Chapter 9: Pulmonary Nutrition โ€œThe doctor of the future will no longer treat the human frame with drugs, but rather will cure and prevent disease with nutrition.โ€ย โ€“ Thomas Edison ย  Written with grโ€ฆ

4 years ago

BarbS

BarbSvoted on My Journey with Lung Disease: Family Connection

Gave a thumbs up for a blog post!

4 years 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

4 years 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 havenโ€™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!

COPD Foundation Online Community and Support Network

COPD360social is the free online social network about everything COPD for anyone affected by COPD. Members can share thoughts and ideas, ask …

4 years 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

4 years 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

4 years 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/

Try These Natural Tricks to Fall Asleep More Easily

Complementary approaches can aid medical methods

4 years ago

Ksmiles123

Ksmiles123

4 years 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/

4 years 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.

4 years 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?? …

4 years ago

Ksmiles123

Ksmiles123

Hello! Happy Valentines  / Galentines Day to all!๐Ÿ˜๐Ÿ˜โคโค๐Ÿ’›๐Ÿ’›!  I believe that all of our hearts โ™ฅ 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!  

4 years 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

2019 NTM & Bronchiectasis Physician/Patient Conference 16:55 Industry Panel

2019 NTM & Bronchiectasis Physician/Patient Conference Industry Panel Discussions Panelists: Steve Lisi, AIT Therapeutics Kevin Mange, MD, Insmed Chrispin Ka...

4 years 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. ๐Ÿ˜4 years ago
  • Ksmiles123Lol,
    Most docs still question? Whatโ€™s NTM or NGM.... ahhh!4 years ago
  • ksuzanne....ahhh!๐Ÿ‘4 years 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

4 years 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.4 years ago
Ksmiles123

Ksmiles123

4 years 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

4 years 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?

4 years 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.4 years ago
  • Ksmiles123Michelen man, lol.  Yes, I am so glad that it has been a mild winter.  March 1st is next weekend, yahoo!!4 years ago
Ksmiles123

Ksmiles123

4 years 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

4 years 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.

4 years ago

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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