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I was told I am "clinically a candidate for treatment" by my pulmo. My ID doc said "you will treat within 3 years - I don't have anyone who doesn't treat within 3 years". I was having hemoptysis every 4-6 months, but "nodules" would get better in some places, worse in others, and breathing stats did not really decline over time, so I chose not to treat. Have been diagnosed for almost 4 years (but surely had it much longer). Over the last 1 1/2 year, I got serious about airway clearance and I asked to be changed from 3% saline to 7%. Now mind you, given my bouts with hemoptysis, my change to 7% was VERY slow and methodical. It took me 3 months to work up to the full 7% as I wanted to be careful not to irritate my tendency to bleed. I have been full 7% for all this year now. (OH, and I must mention, my knowledge of the 7% came ONLY from this site, never a mention of it from my docs -- thanks so much to all here who continue to help educate me).
I guess I can't say I "ditched" the antibiotics because I never started them, but I have been able to avoid them despite what my ID and pulmo said would happen. I know it could change at any time, but so far I have remained healthy and antibiotic free!!! YAY!
Replies to "I was told I am "clinically a candidate for treatment" by my pulmo. My ID doc..."
@shooei Good for you! I think the reason your ID doctor said “treatment within three years” is because so many of us are not comfortable or convinced about treatment, and it probably takes three years to accept that treatment is necessary and be on board with it- especially if the MAC has gotten worse! irene5
Hello Shooie. Have you had a recent sputem test?
@thumperguy Don - I went off antibiotics after 1 1/2 years back in December due to severe issues with them, even though I was still MAC-positive. The ID doc consulted with NJH, my pulmo supported the decision. I continue nebs of 7% saline with levalbuterol added as needed. In June I was symptom-free, but seen by virtual visit, less than satifying for both of us. Now my pulmo is back in clinic, and I will see her in September (I think) and do a sputum test. If still positive, they will do a CT in December to see what is going on within my lungs. I am asymptomatic at this time. With my current 7% neb, exercise and walking routine, I am also experiencing less shortness of breath. And fewer asthma exacerbations!
Sue
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Shooei, what an educational post; at least for me. What’s an “ID” doc?
Like you, I learned about 7% saline here too, then informed the pulmo about it.