fdixon63 (@fdixon63)

Need clarification on dosages of Vitamin D3. I started taking it many years ago (on my own) and don't ever recall having my levels low and can't remember why I started taking it. I had not been diagnosed with MAC/NTM at the time. That DX came about earlier this year. Anyway I take capsule form 5000 IU (125mcg). I noticed a lot of talk of taking in mg amounts. Is that a prescription D3 and are there options to get it injected??? Just want to get it straight. Thanks to the group. So much good information.

Hi. What is a recommended dose of vitamin D? I'm taking 125 mcg a day at bedtime? I've taking it for a number of years. Not sure the reason I started taking it but sounds like it was a good thing to do.

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.