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Discussions
We live off-grid. Does anyone know if NTM bacteria can be found in rainwater.
The link below provides a calculator to determine the heat index.
Please take action steps, in advance to keep cool, well hydrated and stocked up on any medications you may need.
https://www.wpc.ncep.noaa.gov/html/heatindex.shtml
Please assist our BNTM community in increasing public awareness of Bronchiectasis.
Sign up for our awareness toolkit. Help us raise awareness in your own network with our free toolkit. It's packed with social media posts, resources, and tips to help you spread the word.
I occasionally get blood in the sputum. For severe cases my pulmonologist prescribes antibiotics, but this time it is not that severe, and seems to be getting better.
Can this issue resolve on its own??
I have heart issues while on treatment. I'm considering stopping treatment. Anybody here just watching and keeping an eye on MAC with out treatment?
I started MAC treatment in March but I had to stop in June due to tachycardia. Now I'm waiting for my pulmonologist to come up w a new treatment plan. I've been off treatment for a week now. I'm worried about not being on treatment.
What treatment is available if the big 3 used for MAC causes tachycardia. Are there other options?
Many caregivers need to be reminded that they must take care of themselves as well as the person that they are caring for. Similar to the being a person on an airplane, it is important to be reminded that you must put the mask on yourself properly before we can take care of others. The link below offers support and guidance for caregivers: https://www.helpguide.org/family/caregiving/family-caregiving
Knowledge is power. The more you know about a particular disease and how it impacts an individual, the better you will be prepared as a caregiver.
We host a monthly online BNTM Coffee Social support group on the 2nd Wednesday of each month at 3pm, EST. Detailed information about upcoming meeting topic and how to register is posted on this site the week before the meeting.
Additionally, there are support groups throughout the world. Please see the link below.
This tool assists individuals to manage their Bronchiectasis. The tool outlines steps for daily management and provides guidance on what to do if symptoms increase: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/ActionPlanEnglish.pdf
The information below is taken from a paper, Reducing Environmental Exposure to NTM, by Joseph Falkinham, PhD, May 3rd, 2021
Flush and Run Water in Unused Lines to Reduce Water Age. Water age refers to the time water stays in pipes in houses. The average water age in household plumbing is 1-3 days. Residence of water for over 3 days leads to a loss of disinfectant and the resulting growth of NTM and other waterborne pathogens. Increased water age can occur in plumbing in areas of a house that are unused; for example, in an unused bathroom or unoccupied wing of a house. The solution is simple, have someone not at risk for NTM disease to flush commodes and run water (5 min) in taps in unused bathrooms and in seldom used laundry tubs, half baths, and outside faucets.
Having another family member or friend flush the system will reduce your exposure to NTM. Enjoy your getaway.
It is recommended that you unscrew the showerhead and submerge it in undiluted bleach for 30 minutes. Remove it from the bleach and rinse before screwing it back on the shower tap.
It is also recommended to replace the showerhead with one that produces fat streams, not a mist.
Many “low-flow” showerheads produce a fine mist that contains droplets with high numbers of NTM; small enough to enter the alveoli of your lungs. Replace such a “low flow” or misting showerhead with one that has large holes (greater than 1 mm diameter).
Joe Falkinham’s paper on Reducing Exposure to NTM, 202
The link below reviews the diagnostic tests used to determine whether or not a patient has an Aspergillosis infection: https://fightfungus.org/diagnostic-testing-aspergillosis/
I have intermittent asthma, resulting in an onset of wheezing, which often occurs with severe weather changes. The symptoms of asthma are often confused with a respiratory flare-up. The symptoms of asthma may lead one to be anxious, fearing that they are getting a respiratory infection / NTM or worsening of their Bronchiectasis when it could be asthma. Asthma may be short-term for many individuals and treated with an inhaler or nebulizer.
Below is an article from the Mayo Clinic on the basics of asthma:https://www.mayoclinic.org/diseases-conditions/asthma/symptoms-causes/syc-20369653
I have intermittent asthma, resulting with an onset of wheezing, and occurring severe weather changes . The symptoms of asthma are often confused with a respiratory flare up. The symptoms of asthma may lead one to be anxious, fearing that they are getting a respiratory infection / NTM or worsening of their Bronchiectasis when it could be asthma. Asthma maybe short term for many individuals and treated with an inhaler or nebulizer.
Below is an article from the Mayo Clinic on the basics of asthma:https://www.mayoclinic.org/diseases-conditions/asthma/symptoms-causes/syc-20369653
There are many causes of post nasal drip, including sinus infections and allergies. The link below reviews the basics of post nasal drip and the treatment options: https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/167/Postnasal-Drip-in-the-Bronchiectasis-Patient
Stress and strong emotions can present with respiratory symptoms, such as shortness of breath and rapid breathing, as the airway between the nose and the lungs constricts. For people without respiratory disease, this is generally not a problem as the body can manage the additional work to breathe comfortably, but psychological stressors can exacerbate breathing problems for people with pre-existing respiratory diseases such as asthma and chronic obstructive pulmonary disease.
https://www.apa.org/topics/stress/body
This tool assists you to identify, track your symptoms so you are able to communicate more effectively with your health care provider. https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/NTM_Management_Tool.pdf
Please let us know if you have any specific questions.
The link to the Bronchiectasis Action Plan tool may assist you in tracking your symptoms and communicating effectively with your health care provider. https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/ActionPlanEnglish.pdf
Common side effects include a metallic taste and an upset stomach . The link below goes into greater details about this drug: https://www.drugs.com/clarithromycin.html
Please let us know if you have any questions.
Ethambutol is best taken on an empty stomach, 1 hour before breakfast. Do take the full dosage of 2-3 pills at the same time- do not divide the dosage throughout the day.
Lab tests- a CBC( cell blood count) and a Biochemistry panel should be done monthly, especially checking for liver function.
It is important to be under the care of an ophthalmologist or a neuro- owhile on Ethambutol. It is recommended to read small print daily- if blurry vision occurs two days in a row- stop the Ethambutol and see your ophthalmologist as soon as possible.
( NTM Patient Course, Management of Medication Side Effects, Dr. Gwen Huitt)
It is recommended that you have your hearing checked at least every 6 months or much more frequently if you already have a hearing loss.
It is recommended that you take Rifampin at bedtime with a saltine cracker and a few sips of water.
Labwork is recommended once a month which includes a Cell Blood Count,( CBC) that checks your white blood cell count and your platelet count, ( clotting ).
A Biochem Panel, ( also known a as a SMA20) is done to check the biochemistry of your blood , which includes checking your liver function, sodium, potassium and other essential elements in your blood necessary for proper functioning of your body
The link below provides an interaction checker to alert you if there is any drug to drug interactions, drug and food interactions: https://www.drugs.com/drug_interactions.html
Different antibiotics are used to treat different types of respiratory infections. The link below reviews the basic function of antibiotics and describes the details for each antibiotic listed.
You will find that a certain antibiotic or a few antibiotics which agrees with you more than others . It is hard to remember the side effects of a drug that used years ago- a log to track your antibiotics will lessen the chance of repeating an antibiotic that did not agree with you in the past. https://www.drugs.com/article/antibiotics.html#a5
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. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with Bronchiectasis and NTM, please consult a physician before making changes to your own Bronchiectasis and NTM management plan.
Community posts are monitored by the 360social Community Manager, as well as staff respiratory therapists, educators, and other medical professionals.