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

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Below is a link on proper hand washing: https://www.cdc.gov/handwashing/when-how-handwashing.html

12 hours ago

  • NewestOldest
  • Brandon This is the best way we can really help make a difference with not getting sick, thank you for the reminder with doing the "Happy Birthday" song twice to know we have given it a good amount of time washing!  Simple and effective.11 hours ago
  • Ksmiles123Yes, the birthday song is a good timer,:).
    It is important to wash w warm water fir at least 30 seconds.7 hours ago
  • GretchenIt always amazes me how many adults do not properly wash their hands! Thank you!7 hours ago
Ksmiles123

Ksmiles123Hello! Information on Corona Virus for health care practices: https://www.medscape.com/viewarticle/924555?nlid=133768_785&src=WNL_mdplsfeat_200204_mscpedit_nurs&uac=287092CY&spon=24&impID=2267771&faf=1

1 day ago

Gretchen

Gretchen

Welcome to all new members of the community! Thank you for being here and participating in the lives of others like you. As we learn at many conferences and through our reading, we all have a lot of unanswered questions. Is there something you need help in answering or do you have some experiences that could help someone else? Please share and inquire. If you are wondering about something related to Bronchiectasis and NTM, there is a good chance someone else is too. To Answer a question, click on the Question you wish to view and then click on Add an Answer. A box will appear for you to type in your answer or experience. We have 190 questions-share your knowledge! If you wish to Ask a question, go to the left side of the screen under the Community Discussion menu. โ€ข Click on Question and Answers. โ€ข From here you will see Ask a Question. โ€ข Click on it and you will be taken to a separate screen.โ€ข Under Question, type in what you wish to ask and add in a brief description or any other comments under Description. โ€ข There is a section named Tags. This will assist users in searching for information that involves your question, like Bronchiectasis, NTM, Quality of Life, Research, etc. You can add as many tags as you want. Make sure you add a comma between each individual tag.โ€ข Finally, click on the orange box labeled ASK and it will be posted in the Activity Feed.

1 day ago

Kandy

Kandy

Yes xolair is for high IGE.  I had at one time, 32,000 which is unreal drs said highest they have seen. Sent me to Denver Jewish they lost my schedule so nothing got done that whole week.  This wa 2003 in there. My daughter took me to a pulmo she worked with in ND and he checked my IGE IGG IGA was low in the subclases so that allowed me to get gamma gobulin Ivs for some time to knock out the IGE and help boost my immunity.  It helped so I could receive xolair.  You can be to high or to low to get xolair.  That is for allergic asthma 

1 day ago

  • NewestOldestClick to View All Comments7 comment(s)
  • KandyKsuzanne have you had your eosinophils checked there are other biological injections going to ask my allergist about neutrophiis beings I have bronchiectasis. My eosinophiis were ok my pulmo said.  Do not know if they are somewhat related to each other or not. 9 hours ago
  • ksuzanneYep, Kandy, my eosinophils are high when I'm not on prednisone. That was why it was weird that my neutrophils have always been mid range and they shot up sky high when I had the allergic reaction Sunday.  From what I've learned, COPD, Bronchiectasis, and NTM's usually involve neutrophils, especially in the tissues, but that also happens with the eosinophils when they don't show high in the blood, they can still be in the tissues. When I had lung infiltrates, my neutrophils crept up to high end of normal, and my eosinophils were like 9.9 from normal high 5.5. When they gave me prednisone and an antibiotic they went back to normal. Do you get copies of your blood work? I wouldn't have known about the high eosins in my blood, my PCP never mentioned it. I get all my copies thru mychart.  I had been seeing my doc for 9mos and the first time they were commented on was my first appointment with the allergist.  He said "why, you have allergies, your blood work shows it!" I didn't need him to tell me that, but at least he was paying attention. 8 hours ago
  • Ksmiles123Yes, getting copies of all our lab tests is important.   Glad that your doctor was paying attention.  Sad reality- things do slip through the cracks, similar to every other professional field.  We have to be our own watchdogs, advocate.7 hours ago
Kandy

Kandy

Well here we go again. Now granddaughter tested for Whooping cough two more in to dr today to be tested.  Two more waiting on the whooping cough test.  So that makes Influnenza B and Strep with my grands. Glad I have not been around them since 26th.  I am to rehab and home no where else.  Friday xolair shots will have to be careful.  We are all on zpak for that now but I take it 3 times a week anyway.  Man the drug store be running out of tamiflu and zpak.   The state even called my daughter to find out where the granddaughter picked it up at I guess its very Ccontagious.  She been to school with it.  This worst year for everyone being sick like this.  

1 day ago

Gretchen

Gretchen

Mark your calendar! You are invited to participate in the first ever patient and caregiver centered movement to inform COPD research. The COPD Foundation is holding a 3-week voting process called Help GUIDE COPD Research, where you, the patient and/or caregiver, has the opportunity to tell us what research is most important to you! 


 On February 24, 2020 we will post 25 Research Priorities for you to rank on COPD360social. If you are not yet a member of COPD360social, you can register here: https://www.copdfoundation.org/COPD360social/Community/Activity-Feed.aspx.


Your input is extremely important. The priorities you and other patients set will help create a research agenda for the COPD Foundation and our partners for the next decade or more in COPD Research. By using your voice to guide COPD research, patients, for the first time will be driving the science in this disease! 


We will post more information about the Help Guide COPD Research Event as we near the date of launch, February 24, 2020!

1 day ago

Ksmiles123

Ksmiles123

Hello! Below is a good review of gut health and common gut issues: https://newsinhealth.nih.gov/2020/02/gut-troubles

1 day ago

Kandy

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

Biologics would Xolair be one? I think so been on taking for allergic asthma since 2003 2 times a month 375mg 3 shots
Ksmiles123ksuzanneMari305 also answered the question Ksmiles123and 2 others also answered the question

2 days ago

Ksmiles123

Ksmiles123

Hello! Below is a review of basic blood chemistry panels. It is important to keep track of those numbers. https://labtestsonline.org/tests/basic-metabolic-panel-bmp

2 days ago

  • ksuzanneThis is very timely Ksmiles123. Just got my cbc diff yesterday from the er visit sunday. It was crazy with flags,  neutrophils were way up there. The NP said, "well nothing really unusual about your blood work, your eosinophils are down, but you were on pred, so..." Hmm.1 day ago
Ksmiles123

Ksmiles123Below is a review of your CO2 blood chemistry lab:https://labtestsonline.org/tests/bicarbonate-total-co2

2 days ago

ksuzanne

ksuzanneThe arsenal is expanding!https://scienmag.com/new-treatment-kills-off-infection-that-can-be-deadly-to-cystic-fibrosis-patients/

2 days ago

Ksmiles123

Ksmiles123

Hello! February is here.  One more month of winter! Spring is around the corner.

3 days ago

Ksmiles123

Ksmiles123

Hello! I hope that you are up to enjoying the Super Bowl had time show.   I am not a big football fan , but I do enjoy the show and the second half of a game if it is close in score.:)

3 days ago

  • ksuzanneHope you all watching enjoyed it. I thought this year's half time show was very well produced and choreographed. A few people in my circles didn't like the raciness, but I really loved Shakira, she's a class act. Hey--it's the SuperBowl--where testosterone rules. Someone told me there was some football too.1 day ago
Ksmiles123

Ksmiles123Hello! A review on antibiotics:https://my.clevelandclinic.org/health/drugs/16386-antibiotic-safety-and-side-effects

3 days ago

Ksmiles123

Ksmiles123Hello! Medications can have many adverse side effects ; the link below discusses peripheral Neuropathy https://www.healthline.com/health/peripheral-neuropathy#outlook

4 days ago

Ksmiles123

Ksmiles123Hello! Donโ€™t be taken by surprise...the link below reviews possible causes of lung damage:https://www.medicinenet.com/surprising_causes_of_lung_damage_respiratory_healt/article.htm

5 days ago

Delia

Deliaasked the question: Are you on Arikayce and interested in sharing your story?

Insmed is kicking off their branded Patient Ambassador Program and is looking for potential patients who are currently prescribed this medication and interested in sharing their story with others to help increase awareness of MAC lung disease and …

5 days ago

Ksmiles123

Ksmiles123

Hello! Below is an informative article on protective masks: https://www.medicinenet.com/script/main/art.asp?articlekey=227723&ecd=mnl_day_013020#

6 days ago

Ksmiles123

Ksmiles123

Hello! Do you understand the differences in the different types of flu vaccines available? You must advocate for yourself in the doctors office. They will routinely give you the basic flu shot if you are under 65. https://www.cdc.gov/flu/prevent/qa_fluzone.htm

6 days ago

sut

sutanswered the question Has anyone tried N-A-C or Quercetin (two different OTC supplement) to reduce mucus production?

I have been on NAC in pill form 600 MG for 2 months now. While I can't say I have had any reduction in sputum, I can say i've had no exaserbations or problems taking it. So i'll continue. Thanks for all the input on this. John
ksuzanneMade PramanaBrandon and 1 other also answered the question ksuzanneand 3 others also answered the question

1 week ago

Ksmiles123

Ksmiles123Hello! The video below is on cleaning nebulizers.https://m.youtube.com/watch?v=TevhZlJzfiM&list=PLxdDQiAI50j8svBbMRo6WDUOcbYCG5_db&index=19&t=0s

1 week ago

Kandy

Kandy

Well Influenza B is in town and we were all together for my daughters 40th birthday party so now 4 have showed with influenza B.  I called in to my dr and he did call in Tamiflu 10 day course.  I was with one of granddaughters who has it Sunday afternoon show.  Pray I don't get it be very bad. 

1 week ago

Ksmiles123

Ksmiles123answered the question Flying with Bronchiecstasis

Hello! I am glad that you are being treated by NJC. What did your NJC doctor say about the bleeding? Have you seen an ENT doctor lately? It would be great to take the trip to HW.:
CathlinKandy also answered the question Cathlinand 1 other also answered the question

1 week ago

Ksmiles123

Ksmiles123

1 week ago

Delia

DeliaHi all, below I am providing a link to a blog post on COPD360social which covers NTM and how it relates to COPD.


https://www.copdfoundation.org/COPD360social/Community/COPD-Digest/Article/1511/NTM-Lung-Disease-What-it-is-and-What-you-Need-to-Know.aspx

1 week ago

Ksmiles123

Ksmiles123Hello!  How are you dealing with a chronic disorder? Wintertime is a challenging time for many patients w chronic disorders. https://my.clevelandclinic.org/health/articles/4062-chronic-illness

1 week ago

Ksmiles123

Ksmiles123

Hello! Below is a link for another mask :https://cambridgemask.com/

1 week ago

Cathlin

Cathlinasked the question: Flying with Bronchiecstasis

My husband wants to celebrate our 50th Anniversary in Hawaii. We live on the East Coast. I have flown many times, and have had bronch for many years. I never knew this I had it til 2014. Well now I do clearence, no cough, have had exerbations, and …

1 week ago

Lvo

Lvo

Hi Tracer - in answer to your question about my probiotics:
On antibiotic days (mwf) - 
- when I first get up in the morning, I take one antibiotic (rifampin) with water, wait 2 hours and then take a probiotic along with breakfast and vitamins (calcium, D3, milk thistle and turmeric) - the probiotic brand is โ€œRaw Probiotics, women 50 & wiserโ€ by Garden of Life.  I drink diy beet kvass, goat Kifer, kombucha and snack on diy fermented vegetables between and/or with meals throughout the day for added natural probiotics.
 - I take the other 2 antibiotics (Azithromycin and ethambutol) at 4 pm with water and a piece of toast, wait 2 hours (6pm) and then take another probiotic, vitamins (calcium, multi vitamin, turmeric, milk thistle) with dinner.   - I take one more probiotic and/or drink beet kvass a little before bedtime.
On other days (t,th,s,s):  I take the probiotics with meals and drink/eat probiotic foods throughout the day as desired.
Note:  Iโ€™m taking tumeric because it is a prebiotic to feed the probiotics, and also eating more foods that have Prebiotics like asparagus, bananas, etc.  and Iโ€™m taking milk thistle in hopes that it will help protect my liver from negative impacts from the antibiotics.   
I believe my new focus on probiotics, probiotic food and prebiotic food has helped ease my acid reflux, which in turn has significantly improved my quality of sleep!  In some ways, I feel better now than I did before taking the antibiotics.  Keep me posted on how you are doing.  โค๏ธ

1 week ago

Ksmiles123

Ksmiles123

Happy Lunar New Year!  I hope that the days ahead bring you better health and peace.

1 week ago

Ksmiles123

Ksmiles123Hello! Very important to use good hand washing technique: https://www.cdc.gov/handwashing/when-how-handwashing.html

1 week ago

LadyP3

LadyP3

Looking for face mask recommendations for travel. 

1 week ago

ksuzanne

ksuzanneGood afternoon all, in my quest to understand how my radiology reports are interpreted, I came across this slick and entertaining website. Not only is it rich with helpful articles and case histories, many of the ct scan images to the right of the page are scrollable!
https://radiopaedia.org/articles/middle-lobe-bronchiectasis?lang=us

1 week ago

Ksmiles123

Ksmiles123Hello! Do you need a review of the anatomy of the respiratory system?https://www.healthline.com/human-body-maps/lung#respiratory-system

1 week ago

Ksmiles123

Ksmiles123

2 weeks ago

Ksmiles123

Ksmiles123answered the question Did your bronchiectasis go away on CT?

Ksuzanne, Nothing surprises me anymore... It could be that your Bronchiectasis is just very mild and he just didnโ€™t mention it. It is all good news- if it disappeared or it is mild. Now, be mindful of all preventive measures going forward will keep …

2 weeks ago

ksuzanne

ksuzanneasked the question: Did your bronchiectasis go away on CT?

I got my first ct with contrast last may/june and it showed emphysema, mild, diffuse, bronciecstasis and lung scarring upper lobe, nodule and infiltrates.My pulmonologist remarked my spirometry in may did not look that bad considering my current year …

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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