I buy my own on line. I had to look for a while but finally found the individual parts without the mask. NO cheaper than the prepackaged, but avoiding some non-biodegradable waste.
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I soak every other in dish soap water then air dry. Weekly heat clean in microwave using a special bag provided by my daughter (ID specialty nurse.) Same with my airway clearance device. This was approved by my pulmonologist and ID doc. I was also instructed by respiratory therapy to replace neb parts and hoses every 3-6 months depending on frequency of use.
@jkansas66 Wow that's miserable. I've been on the big 3 for 11 months and was having similar issues, so the doc switched me to azithromycin which helped. I also tried a few things that have helped. Years ago I got a bad case of food poisoning with horrible nausea. My physician at the time recommended flat room temperature Coca-Cola, nibbling on raw apples (skin and all) and pretzels os saltines. The idea was to never have an empty stomach. As the symptoms lessened I was able to add other food gradually. Also, there are other antinausea meds your doc can try.
I have been on the Big 3 for almost 11 months, with manageable side effects. Last week I got the word that not only was my sputum still positive for MAC, but that I also have a new “spot” on my lung. Beginning Monday, I am switching to DAILY doses of the Big 3 until my tests are negative. So, I’m not in the best place mentally and emotionally right now.
New symptom – for the last few days I have had what could best be described as a stabbing pain in my back, between the shoulder blades but more to the left. I tried my favorite chiropractor, and got little relief. It was manageable by position change and ibuprofen until yesterday when nothing seemed to help.
Last night, while out camping miles from home, it was accompanied by nausea, an ache in my left arm and up the side of my neck.
Panic time – is it heart? My EMT husband promptly took me to the nearest ER where they did a full heart and blood workup – result – no conclusion, but my heart is fine. Today it’s back to a persistent ache (on 400 mg ibuprofen every 4-6 hours, cannot take tylenol.) Of course this happens on a holiday! I’ll be calling my docs first thing tomorrow.
(Before anyone yells at me for not calling 911 – my husband checked my vitals and concluded it probably wasn’t heart, that any help would be first responders, not EMTs or paramedics, coming from quite a distance, and that he could get me directly to the ER faster than they.)
Has anyone else had symptoms like this? Was it diagnosed by an ER or your doc?
@alm2019 – I'm a little late to the party here, but take a look at this video from 2016 from a NTM conference. Link: https://www.youtube.com/watch?v=U1ZmJAQlgLw. The gist of it is that it seems what is identified as intracellulare may be chimaera, not all testing differentiates between the bugs well. Chimaera is another of the slow-growing NTM, so the treatment of the two is similar, just be sure sensitivity testing has been done. To see all the videos from that conference, go to https://www.nationaljewish.org/ntmvideos2016 .
You are right – your journey sounds like what a lot of us have been through. My daughter is even younger than you – 39 – and has bronch, a diagnosis that took years. Her docs are looking for a genetic component, because she is the 3rd known generation in my family.
Susceptibility tests for your MAC are a must, else you are putting yourself through this medication torture with a chance it might not do any good. But the doc may just have started the typical regimen while waiting for the susceptibility results, which take at least 2 months. Definitely revisit the vision and hearing with the eye & ear docs. These should also be scheduled regularly throughout your treatment. As for the GI issues, I recommend a good probiotic supplement to help – not perfect, but better than nothing.
As for the future:
First and foremost, as the infection is brought under control by the meds, you should get energy back. In my view, the trick is to be as active as you can, even if you have to push through the fog/sluggishness.
Yes, bronch & MAC are lifelong conditions, but so is diabetes, rheumatoid arthritis, kidney disease… Every one of us will have health concerns as we age, the key is to manage them in such a way as to live your life to the fullest. That means saving your energy for the things most important to you, and letting other things go. It sounds like your two main concerns are needing to continue to work, and being able to do things with your grandchildren. To focus on those, you may need to let other things go – maybe gardening, cleaning, church or other volunteer activities, … need to be pared back or turned over to someone else. Shopping is an area that is easier then you might think to save energy – take advantage of the numerous on-line ways to shop, even including ordering groceries for delivery or curbside pickup (maybe on the way home from work.) Ask your kids for help – maybe play with your grandkids (even a board game or read to them) while their parents clean your house, do laundry, yardwork or chores for you – like you would help them if they needed it. If your home is too much to care for, consider downsizing to something more manageable.
Above all, if fear and anxiety are crippling you, get a little counseling – dealing with a long-term chronic condition is stressful, and gaining some insight and tools to help yourself can be a lifesaver.
Good luck to you as you undertake this journey. Keep living your life to the best of your ability and bring your concerns back to the group.
Tue, Jun 25 8:38pm · Medication change from clarithromycin to azithromaycin in MAC & Bronchiectasis
Thank you everyone for the kind words and good thoughts. I am unable to take rifampin on an empty stomach or it comes back up, so the docs are okay with my bedtime routine. I use instant breakfast in my morning coffee and protein fruit and vegetable smoothies midday to boost both calories and nutrients. I just keep plugging along. The I'd doc is confident that the bug will finally succumb.