Mucociliary Escalator: What is your airway clearance routine?

I was doing clearance twice a day until about 2 months ago. There was a discussion about whether once daily was sufficient. I still work as an clinic rn daily, so didn't fit in 2x very much except when I would catch a cold (not covid) or feel sinuses acting up. I'm only going to an id doctor now through Ochsner. (my pulmonologist np left and I haven't got a new one yet). The vest was never offered. I feel so much better with the 7% saline nebs (only started 4 months ago-was on 3% before for a year), and this new routine (on for 2 months). I no longer cough up sputum during the rest of the day or night. It is a game changer so far.

Hmm- I am going to suggest that "feeling better" after one day on doxy is just because you didn't wait long enough for your body to recover from the cold virus. Colds can last from 7-14 days, depending on the specific virus and our own immune systems. This is very typical of people who keep a "Z-pack" on hand, start taking it on day 5, 6 or 7 of a cold, and believe it cured them. Actually, time cured the cold, and they took unnecessary drugs.

I stopped the antibiotics for MAC at the end of 2019 (I was still MAC positive). At that time, I was sure I was going to have frequent exacerbations because it was my "pattern" for years before my MAC & Pseudo were diagnosed and treated.

I talked to both my ID doc and my primary about having an "emergency" script like I with some other meds for treating my asthma and frequent herpes flares. Both said "NO!" and gave me many reasons, but especially because I did have this history, and had been on many antibiotics, some effective, some not. Their logic was that treatment is available everywhere if I become ill (I travel over 6 months of the year), or by phone consult with one of them. They wanted no chance of over, under, or incorrect treatment, and forming yet another antibiotic resistance.

Last week, I came across an very interesting article about who succeeds in MAC treatment, and it talked specifically about the other infectious organisms present in those patients. My takeaway is that we really need to back off on antibiotic use unless absolutely necessary, because overuse can and does actually kill off beneficial organisms. So, I am pretty sure my docs were right in their approach - you can read the article here:
https://www.ncbi.nlm.nih.gov/books/NBK537076/#

May I ask you what additional steps (above typical airway clearance) you took to push back the exacerbation and let your body recover from the cold virus?

Sue

I guess that 2 exacerbations so close together would make me start thinking about antibiotics too. What does your pulmonologist recommend?
Does your latest CT show progression of the infection compared to the previous one? Or the latest sputum sample show a higher level of infection? Those would be 2 keys for me.

But, I would try really hard to put on some weight first - a dietician can help you design a really high calorie meal plan, and a way to continue it during treatment. I lost 20% of my body weight in 18 months on the antibiotics, in spite of forcing myself to eat something high-calorie & nutrient dense every 1-2 hours during treatment.

How long have you been on "watch and wait"?
Sue

I have a CT scan scheduled at the end of this month. My current pulmonologist never gets a sputum sample since my bronch with sputum and Dx, which was a couple of years ago. I am not pleased with her to say the least. I'll see what the CT shows and what she says. I've been on watch and wait for the past couple of years but it seems to be that my symptoms are slowly increasing plus these 2 exacerbations. If you have any further suggestions I'm all ears!

A different doctor would be ideal but there is also the difficulty with the lab. The lab here (as with many labs) does not do a bacterial load count or other detailed reports that are talked about at the main centers like Tyler Texas or Denver. I don't know if it is possible to send sputum to one of these centers and have it still be a viable specimen? And if so, if my doctor would do such a thing. When my bronch was done all they did with my sputum specimen was culture and AFB smear. I think that is the extent of which most labs can do. Do you know if sputum could be sent and still be viable and if one of those centers accepts specimens from other places for testing?

Actually, the lab is not a problem. And yes, samples, once prepped in a lab, can be forwarded for testing.
My doctors in Minnesota send any suspected mycobacteria to the lab, and if the preliminary slide shows gram negative bacteria (they cannot identify which one(s) at this point) the sample is sent to NJH for the complete culture.

I know that others here have had their specimens sent to a variety of remote labs as well.

Sue

Hi Sue, can you send samples to other labs without an order from the doctor? I send my samples to the clinic I go see my doctor. Can I send to a different lab or LabCorp and etc? I mean without an order from the doctor.

I'm not sure what would be the point of doing that because there is no guarantee that they will see or accept your other lab results. It's better to work with, not in parallel with or counter to, your doctor or care team. It may take some research, persistence and persuasion on your part, but that is how you build a team...

This is what I might say -
"Good morning, doctor, I am part of a Bronchiectasis and MAC Support Group through Mayo Connect. This is very helpful to me because [choose one or more...MAC is so rare I never heard of it before my diagnosis, I don't know anyone else with this infection, I don't know how many cases you see every year...] On Connect, I communicate with hundreds of MAC patients across the country and even in other countries. Many of them are able to get very detailed information about their NTM from sputum samples, including species differentiation, colony counts and medications sensitivities. I would like for US to have the same information when WE make decisions about MY treatment. Can we find a lab, here in Texas, where you can send my samples for processing? Or, if there isn't one, I have done some research and found that National Jewish Health (NJH) in Colorado does this detailed testing and accepts outside specimens on request. There may be other labs that do this as well."

This would tell your doc you want to be an active participant, open a conversation between you, and maybe be the final "push" for you to find someone new if they are not receptive.
What do you think of an approach like this, either in person, on the phone, or through your patient portal?
Sue
PS. I may have been "fired" by a doc a few years ago when I tried to get help on my own, and they took great umbrage.

Actually, the lab is not a problem. And yes, samples, once prepped in a lab, can be forwarded for testing.
My doctors in Minnesota send any suspected mycobacteria to the lab, and if the preliminary slide shows gram negative bacteria (they cannot identify which one(s) at this point) the sample is sent to NJH for the complete culture.

I know that others here have had their specimens sent to a variety of remote labs as well.

Sue