Newly diagnosed

Are you nebulizing with 7% saline solution 2x/day? Doing daily airway clearances? I was diagnosed with macrolide resistant Mycobacterium Abscessus subspecies Abscessus and have been nebulizing 2x/day with 7% saline solution since November 2024. I think it really helped in lowering my MABC count. Some doctors will put you on 3% if the 7% is too strong, but when I went to NJH-it was stressed to try and stay on the 7%. With your inflammation, this may be hard. Do you know if your MAC is macrolide resistant?

I am also sorry you have been diagnosed with NTM.
The sputum samples take six weeks.
I also had to have a current CT scan. There was paperwork and my local pulmonologist { who did not feel capable to treat me ( nor did the local ID physician)}, dragged his feet.
It took me from October ‘22 to January 2023 to get an appointment with UT East Texas in Tyler.
You have to be assertive.
Prior to my trip to the ER due to coughing up blood ( Sep 22) I had been asymptomatic with Mycobacterium Simiae and was seen at the U.S. Army’s Brooke Army Medical Center in San Antonio. I chose not to have treatment since I was asymptomatic from its accidental discovery Jan 2013 until 2022.

I don't know about your situation but do keep in mind that there are many that choose not to take the Big 3 and just do airway clearance and that is considered treatment also. Sometimes called "watchful waiting". That would be something to discuss with your doctor, which by the way, I hope specializes in treating NTM disease.

Hi welcome to this strange group! What you will find here is invaluable.

What you are describing is typical. It's more worrisome to have doctors who rush into treatment without carefully confirming dx and if at all possible, having your sputum analyzed for susceptibility -- that is, testing for which antibiotics your Mac may be resistant to and which it is not resistant to. This is all important and can take many weeks. Mac is slow growing and very challenging to treat so it sounds like yr medical team is on track. I went through almost exactly the same timeline 🙃.

This is all assuming you are not in a medical crisis of course which it sounds like you are not. So welcome to the hurry up and wait club.

Are you nebulizing with 7% saline solution 2x/day? Doing daily airway clearances? I was diagnosed with macrolide resistant Mycobacterium Abscessus subspecies Abscessus and have been nebulizing 2x/day with 7% saline solution since November 2024. I think it really helped in lowering my MABC count. Some doctors will put you on 3% if the 7% is too strong, but when I went to NJH-it was stressed to try and stay on the 7%. With your inflammation, this may be hard. Do you know if your MAC is macrolide resistant?

@cissa Depending upon all the type of tests they have suggested or have had you take....I believe that if one can go to NJH in Denver early on to have all the tests they do to rule out underlying issues is a help. That is what I did when I realized my local pulmonologist did not know enough about the entire way to help me.
Those of us on Medicare usually have no problem self referring...much depends upon your type of insurance. The financial department can clarify some of the insurance concerns one might have. They mostly have patients go there that have health insurance that pays for the visit. The visit is usually a week long visit. It could be longer depending upon what the tests indicated.
With BE, Bronchiectasis, you will see on this site that we all are doing the nebulizing. My local doctor did not indicate to me much of what I learned on this site or at NJH. NJH, put me on the nebulizing routine immediately, and doing one or more of the Air Way Clearance Techniques that can be found on the internet from various medical facilities.
Also, if you go the the heading of this site, MAC and Bronchiectasis (Support Group) and click on it you can look up subject matters discussed on the site that have much information for us.
Barbara

I haven't started any treatment yet. I believe the next step was to determine resistance. I have a follow-up appt in 2 weeks where she may discuss some options.

One thing I have learned is how important it is to be your own advocate, along with how little my local "experts" know. No dig on them, it's just that there is a reason why there are clinics that specialize in NTMs. The day my pulmonologist gave me the news that I tested positive to MABC, he gave me a prescription for 7% saline and told me I need to nebulize 2x/day. I later learned, that was really smart on his part. National Jewish NTM/BE Clinic stressed to me how important it is to nebulize with 7%. Studies have shown that nebulizing at early stages of the disease improves outcome. The lab should do a count and determine if your MAC is macrolide resistant, along with which other antibiotics would be classified as Resistant, Susceptible, or Intermediate. On September 13th NJH is having a NTM conference for all those diagnosed with an NTM. This is different than their professional NTM Conference. The registration fee is $25. It may be helpful for you. I have attached info of the conference.

So glad you found this site, it is great and very helpful. I had MAC for 7 years before being diagnosed and was on meds for 5 - 6 years. I am one of the lucky ones that beat it at age 78 and just wanted to tell you that it can be done no matter how old you are. Just stay positive it will be hard at times but people on this site will help you though it as I am proof of it. Good Luck and stay positive.