Nebulizer and saline treatment with daily exercise

@laurademaine Ooops... I meant nodules, not nodes. I also meant 7% saline, not 6%. (need to be less hasty in my reply) Yes, you can find the saline on amazon and the internet but it is very expensive that way without an RX. National Jewish Health is the leading lung hospital so if you can go, that would be great. They also have good video presentations on NTM to help get a better understanding of the disease.
https://www.nationaljewish.org/education/pro-ed/live-events/ntm-patient-videos
Best,
Kate

@laurademaine Hi Laura, my history is very similar to that of @alleycatkate. What eventually led to the diagnosis of bronchiectasis and MAC (after about a year) was that I coughed up about 2-3 TBS blood while lap swimming in 2017. The blood scared me, so I went to the ER, and they did a CT scan. My only other symptom is that I cough up minor mucus/sputum in the mornings. I walk 2-2.5 miles/day, do other daily exercises, and have never taken the Big 3. I do nebulize 7% saline once daily and take one 600-mg capsule of NAC each day.

Good to hear Lori. I hope this regiment keeps working for you. Have you had negative sputum tests in the past 6 months? I still think this is the best way to go. If things get worse over the next year I may choose to go on the big 3, but going to try make this my last resort. Can anyone give me more details for sending in sputum samples to national Jewish hospital?

I agree that we need to keep reading , learning and reaching out to others who are suffering from this terrible disease. Wishing you all the best in the future and prayers that you will continue to feel better. Thanks for your reply.

Sounds like this regiment is working well for you. I’m so pleased to see the amount of people doing an alternative to the big 3. Thanks so much for your reply. Best of luck to you. Sending prayers your way for continued success.

I also wanted to say that while it's unclear why after nebulizing for 1 1/2 years I couldn't get rid of my MAC, I am thinking that one contributing factors is due to the fact that during the 1 1/2 years of my nebulizing, I continued being exposed to NTM. I could have breathed in the NTM while showering or washing dishes or while in my garden working in dry soil. My Kaiser pulmonologist never gave me any suggestions on how to reduce exposure to NTM because he is clueless about this. I now see a MAC specialist at UCSF. During the 1 1/2 years, when working in the garden, I wasn't wearing an N95 mask. I didn't turn up my water heater to above 130 degree F to kill the NTM or change the showerhead to larger holes to avoid mist and steam. I washed my nebulizer parts every time I used it with tap water that may have NTM. I drank water that wasn't boiled for ten minutes or filtered through a 0.2 micron pore filter. So the whole time I was nebulizing, I might have been breathing in NTM. I've corrected all of the above now thanks to the very helpful suggestions on this discussion chat group and the NTMir group. So thank all of you for sharing how you protect yourselves from exposure. And all the best to all.
lora jo

I send sputum to NJH every 6 months and they posted the result on my portal. I take it first thing in the morning then take it to post office mail it. They get it the next day. Cila

I would consider adding antibiotics to a regimen only if I was running a fever. Don

Does insurance cover this? Or does NJH bill?
Thank you.

Here's the dreaded answer "It depends."

If your doctor orders the sputum culture, he can write specific orders to send it to NJH, where they can not only do the AFB (fast) test for NTM/MAC, but also the culture, colony count and sensitivity testing. Few local labs are set up to handle this with the expertise of NJH, so it is a legitimate order. NJH then bills your insurance company, or if your doctor or clinic has a standing arrangement with them, it is billed through their regular lab billing process, and coded as an "outside service."

From there, it is an insurance issue, and depends on your carrier and policy. I have Medicare as my primary coverage and BCBS through my previous employer to take up the slack. My bill is 100% covered. My daughter's employer is self-insured, so she pays the $20 or $25 lab copay.

So if you want it done through NJH, step 1 is to see the doc, discuss & get the order. Step 2 is to check your insurance coverage or discuss the testing/billing process with your clinic. Step 3 is to submit the sample as directed by the doctor either to their lab to be shipped, or direct to NJH.

Have you been having regular cultures done?