fdixon63 (@fdixon63)

Thanks for checking with your daughter. Of course what we want to accomplish is to have the pieces sterilized and not damage anything. I wonder what is your daughter's microwave wattage and what is the "low setting" she uses. I guess I'm skittish about experimenting because part of the neb kit was damaged the first time I used the nanobebe. The company said they would pass the question to their development department and get back with me but who knows. Thanks again. Hope you're having a great day. Faye

I can't imagine the struggles you have had and are having. I've been having more frequent sinus infections so presently have been doing daily saline sinus rinsing with daily Nasacort nasal spray. It is so rewarding when I rinse and blow out yellow stuff because I know I'm warding off the next potential infection. I also wear a mask if I go out when its a windy day. I'll pray for you to get an answer to this problem very soon. It sounds like you have done everything you can possibly do but there must be an answer… Faye

I recently saw on a post at Mayo Connect or on a Facebook group where someone was using a Nanobebe microwave bottle sterilizer to sterilize nebulizer and aerobika. Sounded like it would be a real effective and faster way to take care of this chore. I purchased one and used their setting guidelines for microwave power 1000 watts plus for 4 mins. (Our microwave is 1650 watts) Well, it warped my neb. "T" piece. Luckily I had ordered some disposable sets and was OK there. I've contacted the company with the question by phone and computer but so far no one has contacted me. Thought I would reach out to our group to see if others have had the experience. Thanks.

Wondering why continue Toby after six rounds and it is not helping. Seems we have to devote our daily lives/routines around treatments and sterilizing. We get finished with one thing and launch into another. Don't know how folks would be able to hold down a job with all this going on. My husband and I are retired but would like to go on a trip, etc. but with PICC line and nebulizing we're stuck for now. Waiting to see if I will be able to get the PICC line out after 2 weeks. My voice is now mostly squeaky and cuts in and out like a short circuit. Urg…

Thanks for your reply. So you have not been on Ceftazidime before? Since I've only been on the Toby for three days and already having throat/voice changes, I'm wondering if I'll be able to stay on it for very long either. I'm going to use warm salt water gargles to see if it will help. How long have you been doing the alternating weeks of Toby treatment? Maybe others will respond with their experiences. What really stinks for me is that I was not coughing or having any other notable symptoms but sent in a sputum and here we are. Was just nebulizing once a day with 3% saline–that's it. It's hard to figure things out.

My recent sputum shows Pseudomonas aeruginosa. My doc ordered IV ceftazidime and nebulized tobramycin simultaneously to attempt eradication. PICC line placed Sept. 25 and meds started that afternoon. The ceftazidime will be for 14 days three times a day and tobramycin for 28 days nebulized twice a day. Are there others that have had this situation, meds. etc? My voice is beginning to change but I see that is a side effect of Toby.

Just wanted to pass along that On Sept. 2 I was asking what "toby" was short for. Now have begun nebulizing with it. I had my first sputum results come back after starting with a different doctor in August. My sputum shows it is "growing a lot of Pseudomonas. There are 3 different colonies of this bug in your sputum, and 2 of them are resistant to Levaquin." I had been given Levaquin for Pseudo. A. this spring after bronchoscopy and thought it was gone because cough completely disappeared. Not sure if it was gone or just suppressed and came back. The specimen sent in a few weeks ago was the first one I was able to produce since spring. My doc had ordered the antibiotic cefTAZidime 2 gm injection (IV) every 8 hrs which I began yesterday after getting a PICC line placed. I will self administer the IV ceftazidime for 14 days and inhale the Toby for 28 days. Next will submit sputum to be checked. Has anyone else had experience with this treatment?

I hated to respond about reactions to vaccines because I feel they are important. I had the pneumonia #23 shot two weeks ago. Within 3 hours my arm began to hurt but I know that is normal. The pain got a lot worse. I began to experience nausea, vomiting, low grade fever and very unsteady gait. My husband had to help me to walk to bathroom, change clothes, etc. The next day I called my primary doc and was told if I was not any better in 5-6 days to call back. The next day was the same so went of urgent care. Was given a shot of ?? and prescription for prednisone. Within a few hours I began to feel better. The pain in my shoulder is still bothering me. I've been doing a little physical therapy to try to get full range of motion back. I am 74 and have NTM and bronchiectasis. Now I'm not sure about taking the flu shot but if I do will try to see if they can not give in my arm. I feel like the shot went into the shoulder joint. I'm very thin. I've heard that it can be given in the thigh. Has anyone ever gotten flu or pneumonia shot there?