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

Paid Qualitative Interviews for Patients with Mycobacterium avium complex (MAC) or Mycobacterium abscessus (MAbs) Lung Disease in United States

Have you recently been diagnosed with Nontuberculous Mycobacterial Lung Disease (NTM)? You may be eligible to take part in an interview to help us better understand the symptoms related to your NTM lung disease.

3 days ago

Ksmiles123

Ksmiles123

Hello! Today is National Hug Day! http://www.nationalhuggingday.com/xx

1 hour ago

Ksmiles123

Ksmiles123

16 hours ago

KK

KK

Hello to all thx for all the info on nebulizer and saline and meds   Really helpful.  Great health to all kk

1 day ago

  • Ksmiles123Great health back to you.  It makes me so happy to read members taking the actions steps, researching , learning from one another on this to get to their goal of an improved quality of life!:)))1 day ago
Lvo

Lvo

Hi Everyone - like Tracer, this was week 1 of treatment with big 3 for me.  I'm taking rifampin in the morning when I first get up, ethambutol and azithromycin at 4pm on Mondays, Wednesdays and Fridays.  So far, I'm also not experiencing any major side effects -- had the dark urine as warned, a little bit of queasiness, and maybe a little less energy than normal ..  that's about it so far and hopefully for the future.  Thanks to advise from many of you, I'm taking a probiotic several times a day in between the antibiotics and then one right before bedtime and also drinking plenty of fluids.  I decided to try fermenting my own vegetables for additional unprocessed probiotics, am following an alkaline diet (80% fruits and vegetables),  and taking milk thistle to help mitigate potential liver impacts.  Interestingly, I expected my acid reflux issues to be worse with all the antibiotics, but instead it seems much better -- I'm thinking the probiotics and my new wedge pillow may be the key to that.      Will keep you posted.   thanks for all your support everyone!!!    

2 days ago

  • NewestOldestClick to View All Comments4 comment(s)
  • TracerHi Linda. Sounds like we're on the same track. Just wondering what probiotics you're taking and time of day, etc.  So far so good for both of us! :)1 day ago
  • grรฉReally helpful, thanks, Lvo! I was told calcium and magnesium interfere with the nebulized Tobramycin and oral Levofloxacin I'm on for a month, so I take these supplements at midnite along with saccharomyces boulardii. Also take a couple other probiotics, as you do, between the three daily dosings of antibiotics. An MD โ€“ who's a CF carrier like me โ€“ recommended NAC (โ€“ I did check the "Drugs.com interaction checker" on this). It seems to be helping lots with getting a "low cough" night's sleep. I have M. Abscessus and, newly, P. Aeruginosa (which the present, month-long 2 antibiotics treatment is for). GERD started up after a few days starting TOBI/Lev. Traditionally, b/c I'm 76, I've treated (rare) episodes of acid reflux in the past, with HCl (โ€“stomach acid deficiency correctorโ€“) but resorted to a tab of chewable Pepcid right after the evening neb session a few days ago. That seems to work better for what's likely a drug-induced acidity problem.1 day ago
  • Ksmiles123Hello! The drug interactions checker is a wonderful online tool.
    Yes, drugs do stir up the acids- so glad that you are getting it under control.1 day ago
Ksmiles123

Ksmiles123

Hello! Snowing here in PGH today. Do you feel more flared before it snows or rains? https://sites.psu.edu/siowfa14/2014/10/24/why-does-humidity-affect-snow/

2 days ago

  • NewestOldest
  • ksuzanneYes! I didn't want to think that I have grown that sensitive but yes, I have had a very hard time the last few days with this roller coaster weather. 1 day ago
  • KandyYes for sure we had very cold temps some snow this whole week my breathing was not good.  I know temp changes and pressure does affect me.  1 day ago
  • Ksmiles123It definitely affects me; Tvis is part of our roller coaster ride.  We must be more productive on our good days.  We can not control the weather.1 day ago
Top

Top

I have been maintaining at the same level for roughly 6 months. 

3 days ago

KK

KK

Thx ksmiles and Made. All feed back is great

3 days ago

Tracer

Tracer

DAY ONE DONE!
Reporting in after day one of "Big 3".....not near as bad as I anticipated --so far.
Clarithromycin & ethambutol in a.m. made me queasy for a few hours and then fine!
I'm blaming it on the ethambutol as my evening dose of C I did not experience that.
Took rifampin a couple hours after evening C dose......
Rifampin, well....colorful urine this a.m. but other than that I feel fine. (Glad I was warned about that particular side effect though!)  If this is all I experience with these drugs I will be able to tolerate this well. I'm hoping side effects do not increase. 
Happy Friday everyone!

4 days ago

KK

KK

Hello everyone. Someone wrote a message about using their nebuziler everyday. Are u using it with medication like albutreal  to keep your Mac at bay  as a preventive measure   Please let me know. I use my everyday once a day with albuetral  and it seems to have kept me going  this winter I also use my acapella every day   Please let me know thank you kk

4 days ago

  • NewestOldestClick to View All Comments6 comment(s)
  • Ksmiles123KSuzanne,
    I hope that you feel better soon.  Do you have dry heat? Do you use nasal washes in the winter? Katie2 days ago
  • DinahI use sodium choride 7% in mouth nebulizer daily.  I really cough up a lot after using it.  has been very helpful.   I would like to know if any of you are using a vest that vibrates your lungs?  Do you feel it is helpful?1 day ago
  • Kandyi do neb several times a day xopenex then saline do vest airway clearance system 2 times a day.. I do like 7% hypertontic saline but also find old neb med for mucus called mucomyst.  I alternate these at times. After vest I do brovana  then spiriva then budesonide and last Flovent inhaler.   Try to get these all done by 9:00 AM to get ready to head to pulmonary rehab is hard.  1 day ago
Ksmiles123

Ksmiles123answered the question new diagnosis, so many questions..

Hello! I am sorry to read about your dadโ€™s current challenges. The antibiotics are the only thing that will get rid of the mycobacterium. Added Supplements which have not been approved by the FDA could compound potential issues to body organs such as …
Brandon also answered the question Brandon also answered the question

4 days ago

Moemg

Moemg

How soon after you start the antibiotics do you start to feel better ?

4 days ago

LAT

LATasked the question: new diagnosis, so many questions..

My near 80 yr old father was recently diagnosed with Bronchiecstesis and MAC. He saw an infectious disease specialist today and she put him on the "big 3" on a daily regimen. His latest scan shows cavitation. So far his only symptoms are chronic cough, …

5 days ago

Ksmiles123

Ksmiles123

Hello! How are you doing today? The days are getting longer:); it didnโ€™t get dark yesterday until 5:25- spring is around the corner.:)))

6 days ago

Lvo

Lvo

Hi everyone - Iโ€™ve been out of touch through the holidays... I saw that Tracer and Chicken Little just started the big 3?  Looks like Iโ€™m starting it this week.  My doctor just got a final test result on my MAC, and had sent the prescription in for me.  Assume Iโ€™ll start tomorrow ๐Ÿ˜•.  Will be doing the 3x week routine.  Any suggestions on the probiotics you all are taking?  Iโ€™d  appreciate recommendations.  Will also keep you all posted on any side effects from the medications.  Not looking forward to this, but at the same time, ready to get started.  Need to try something different to stop the constant bouts of pneumonia!  Thanks for being there!  It really helps knowing Iโ€™m not alone in all this! โค Linda

6 days ago

  • NewestOldestClick to View All Comments8 comment(s)
  • ksuzanneGood Luck Ladies,  I will be rooting for you and hope it is smooth sailing!2 days ago
  • DinahDo any of you drink Kombucha as a type of probiotic.  it is fermented and I think delicious and certainly helps my stomach.  GT's is my favorite brand and my favorite flavor is gingerade.  If it is too stong to begin with pour about a fourth of a cup in water or fizzy water and enjoy.  Gradually increase amount to water.  Dinah20 hours ago
  • Ksmiles123Hello! Yes, I have enjoyed kombucha in the past; some brands are quite expensive.Below is a list for those unfamiliar with kombucha and other fermented foods. https://www.kombuchakamp.com/top-5-fermented-foods16 hours ago
Island Girl

Island Girlanswered the question Big 3

Big 3 refers to the 3 drugs prescribed for MAC which is Azithromyacin, Ethambutol & Rifampin.

6 days ago

Kandy

Kandyvoted on My Journey with Lung Disease: Family Connection

Gave a thumbs up for a blog post!

6 days ago

netmouse

netmouseasked the question: Big 3

I'm new here. Keep seeing Big 3. What is that?

6 days ago

Ksmiles123

Ksmiles123Hello! The article below discusses rhinosinusitis and Bronchiectasis:https://onlinelibrary.wiley.com/doi/10.1002/alr.22436

Prevalence and characterization of chronic rhinosinusitis in patients with nonโ€’cystic fibrosis bronchiectasis at a tertiary care center in the United States

Background Chronic rhinosinusitis (CRS) is associated with bronchiectasis; however, this relationship has not been well studied in the United States (US) population. In this work we aimed to determ...

1 week ago

Ksmiles123

Ksmiles123answered the question how to take probiotic with Big 3 & safe to take vit. c,d, omega3 & zinc?

https://vitamedica.com/wellness-blog/antibiotics-and-probiotics-what-you-need-to-know/

1 week ago

Brandon

Brandon voted on My Journey with Lung Disease: Family Connection

Gave a thumbs up for a blog post!

1 week ago

Tracer

Tracerasked the question: how to take probiotic with Big 3 & safe to take vit. c,d, omega3 & zinc?

drug interactions with suppliments

1 week ago

Tracer

Tracer

Starting Big 3 Thursday a.m.  and then have a mid February flight planned to visit friends. Hoping for no side effects or at least minor that will travel well!  :) 

1 week ago

Myrnie

Myrnie

I have a flare up with cold and cough

1 week ago

LJ Walsh

LJ Walshvoted on My Journey with Lung Disease: Family Connection

Gave a thumbs up for a blog post!

1 week ago

LJ Walsh

LJ Walshvoted on My Journey with Lung Disease: Initial Diagnosis

Gave a thumbs up for a blog post!

1 week ago

Ksmiles123

Ksmiles123

1 week ago

Ksmiles123

Ksmiles123

Hello! Do you understand the impact of high inflammatory foods on your lungs, entire body? https://drjockers.com/inflammatory-foods/

1 week ago

Ksmiles123

Ksmiles123

Hello! The link below reviews a healthy lifestyle, not a diet.https://www.healthline.com/nutrition/14-ways-to-stick-to-a-diet#section15

1 week ago

Ksmiles123

Ksmiles123Hello! Below is an older article, written by DrJ Falkinham, a NTM microbiology expert.https://www.futuremedicine.com/doi/10.2217/fmb.10.53

Impact of human activities on the ecology of nontuberculous mycobacteria | Future Microbiology

Nontuberculous mycobacteria (NTM) are environmental opportunistic pathogens of humans and animals. They are found in a wide variety of habitats to which humans are exposed, including drinking water...

1 week ago

Ksmiles123

Ksmiles123

Hello! Are you looking for some diversional activities to do while indoors this winter? https://www.masterclass.com/

1 week ago

Menmac

Menmac

Iโ€™m having another exacerbation of my Bronchiectasis/NTM. A short history. I was diagnosed in 2010 but didnโ€™t go on the 3 drug cocktail until 2012. Iโ€™ve been on the meds ever since. Sputum samples are always positive. I take the drugs only 3 days per week as after so many years, I know I will not be cured of the diseases but just want to keep them in check. My recent exacerbation has been quite debilitating. Iโ€™m on oxygen therapy 24/7 and can walk very short distances without having to sit down. Has anyone reached this terrible level of the diseases? Is there any Quality of Life left for me?

1 week ago

  • NewestOldestClick to View All Comments8 comment(s)
  • Made PramanaHi Menmac. I have bronchiectasis. Itโ€™s difficult for us when we do the things that we were told and take the medicine but didnโ€™t work out. I hope thereโ€™s a way to control the progression of your condition.1 week ago
  • Ksmiles123MenMac,
    Yes, it truly is a roller coaster ride! I used to compare it to manic depression; it goes back and forth, up and down.   You are frequently taken by surprise with weather changes, the unknown,  mild stressors, what you have eaten, etc.   I am a firm believer of the gut microbiome, brain/ energy connection .
    Enjoy the good days, try to give your self permission to rest when you need to.  Napping is still really hard for me after all of these years.
    I describe myself as a type A , living in a type D body at times.
    One day at a time:).  Katie1 week ago
  • Ksmiles123Made,
    We just have to keep seeking new treatments, 2nd opinions.... we canโ€™t give up.:)1 week ago
Ksmiles123

Ksmiles123Hello! Interesting article on NTM w a breakdown of incidence in common NTM bugs.https://www.ncbi.nlm.nih.gov/m/pubmed/29476412/

Clinical features of infection caused by non-tuberculous mycobacteria: 7ย years' experience. - PubMed - NCBI

Infection. 2018 Jun;46(3):357-363. doi: 10.1007/s15010-018-1128-2. Epub 2018 Feb 23.

1 week ago

Ksmiles123

Ksmiles123Hello! The article below mentions m. Gordonae as the most common NTM.https://www.ncbi.nlm.nih.gov/m/pubmed/28433210/

Non-Tuberculous Mycobacteria. An Emerging Threat? - PubMed - NCBI

Arch Bronconeumol. 2017 Oct;53(10):554-560. doi: 10.1016/j.arbres.2017.02.014. Epub 2017 Apr 19.

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Are you practicing better self care in the new year? https://www.mindbodygreen.com/articles/biggest-self-care-mistakes

2 weeks ago

Island Girl

Island Girlvoted on NTM/Bronchiectasis Patients and Carbohydrates

Gave a thumbs up for a blog post!

2 weeks ago

Ksmiles123

Ksmiles123answered the question What is the usual dosage for the Big 3?

Hello! So sorry that you are going through this again- reoccurrence rate is high. I have been down your road. It is always best to call your doctor, double check your dosages , based on being lighter weights, times of day, frequency. It will be …
sandiebrown7 also answered the question sandiebrown7 also answered the question

2 weeks ago

Tracer

Tracerasked the question: What is the usual dosage for the Big 3?

big 3 dosage I feel like what I'm being prescribed is a bit high. I weigh 118 pounds and Rx is for 5 days. 600mg rifampin daily, 800 mg ethambutol 2x daily, and clarithromycin 500 mg 2x daily.

2 weeks ago

Ksmiles123

Ksmiles123answered the question Has anyone been diagnosed with mycobacterium gordonae?

Hello! I grew out m. Gordonae in the past and was not treated. Please review the link below. They will observe you, treat if symptomatic; it is often a contaminant. https://www.nationaljewish.org/conditions/ntm-nontuberculous-mycobacteria/ntm …

2 weeks ago

KarenU

KarenUasked the question: Has anyone been diagnosed with mycobacterium gordonae?

After a year of bronchiectasis, I've finally had a sputum culture positive for mycobacterium gordonae . Has anyone been treated for this? If yes, what drugs, what length of time, and what results. Thanks,

2 weeks ago

Ksmiles123

Ksmiles123

2 weeks ago

Ksmiles123

Ksmiles123

Hello! A list of mock tails below for those on the big 3 or for others who do not consume alcoholic beverages. https://www.townandcountrymag.com/leisure/drinks/how-to/g785/best-mocktail-recipes/

2 weeks ago

sandiebrown7

sandiebrown7

Happy New Year to all ! I am a MAC patient , and have been delighted to find all the information here on this site. It is so important for all of us to know we are not alone on this journey. I live in the Cleveland Ohio area, and have one treatment with the BIG 3 behind me, unfortunately they are thinking I have another active infection, waiting on a CT scan in a day or two, then will be able to see more clearly what my near future holds ...am so hoping I don't have to go back on the meds, but certainly will if I must...had a positive culture, but will have to wait for results from the scan. Glad to have found this site, and thanks in advance for your compassion, makes such a difference to know others care! 

2 weeks ago

  • NewestOldestClick to View All Comments7 comment(s)
  • Ksmiles123I still believe in miracles!  My reoccurrence was after 2.5 years as well.  Wishing you the best on Wednesday; looking forward to hearing from you.2 weeks ago
  • ksuzanneWelcome Sandibrown, from another northeast ohio resident. I got sick the first year i moved to this area also. I dont have an ntm dx but i am sorry to hear you may be facing another round of treatment. it is good you are under the care of a doc that is experienced with mac even though he is new for you. Anyway, wish you luck with the scan results and you can nip this thing in the bud if necessary. Pun intended!2 weeks ago
  • Ksmiles123I like your pun...:), we need some humor or we would have more challenges while dealing with a chronic disorder.2 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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