Any Success Stories for Mycobacterium Intracellular?

@blm1007blm1007
Barbara, thanks so much for sharing your great news! And Happy 83rd Birthday! 🎂 I hope your low or absent mycobacterium means you are breathing well and feeling good! Best Wishes!

@bayarea58 I tried VSL #3 a few months ago, and I did not feel well during that month, not sure whether it was related to VSL #3 but I stopped it. Very good reminder Bayarea58! How do you do?

I have MAC/BE and a lung fungal infection. I stopped the Big 3 almost 3 years ago due to side effects and am on no meds -- at this point anyway.

You are only 73 years old and without many symptoms and I can only suggest you focus on your "good" life now and move on. This disease is slow growing and I will not wait around for its growth. I am 80 years old with no comorbidities. I do Aerobika twice daily w/o saline as I am prone to hemoptysis.

I felt the same way you do when I was first diagnosed with MAC Intracellular and thought "This is it!" That was 3 years ago! But it turns out that we people with few symptoms are quite fortunate. I keep busy, eat a Mediterranean diet, and walk 1-2 miles daily and enjoy my life over all. Admittedly, it is not ideal but one I can accept and enjoy.

Unless something major were to develop, which can happen even when you don't have a disease, I focus my days on positive thoughts and whatever life I have left will not go unfilled and my hope for you is the same! Best wishes!

@pmmar1

Thanks so very much for sharing your status. I completely agree with you. My only symptom is some occasional mild coughing with very small amounts of white/clear slippery sputum. I have a CT chest scan in two weeks to see if the Ciprofloxacin helped the psuedomonas, which I believe it did. My crazy busy pulmonologist keeps giving me dark looks saying we need to start the big 3 antibiotics. I am not onboard with risking the adverse, often serious, and sometimes permanent, side effects right now, when I am enjoying a pretty darn good quality of life. Thanks again. I hope your decent quality of life continues for you! 🤞🏻🙏🏻

@mark1952
I never heard of a CT being able to show if Pseudomonas is gone. I think it has to be a sputum test.

@irenea8
Agreed. Assuming some of the pulmonary nodules might be caused by the psuedomonas, I was hoping perhaps there might be fewer nodules on this scan. Unfortunately, my situation is murky because I think mycobacterium intracellular and bronchiectasis also cause pulmonary nodules. So I don't really know what, if anything, I will learn from the CT scan. Presumably there is a reason the pulmonologist ordered the scan. Hopefully, he will explain how it is meaningful. If the radiologist's observations just say "general worsening," as the last scan in August said, then I am sure the pulmonologist will say I need to start the Big 3 antibiotics immediately.

It is unclear to me whether the doctor ever had susceptibility testing done on my strain of pseudomonas from the lavage fluid from the bronchoscopy, if that is even possible. They have never asked me for a sputum sample. As a patient, I have so many questions and, unfortunately, I have a doctor who does not like to answer questions. They're aren't many options for pulmonologists in my area of NE FL. There is the Mayo Clinic in Jacksonville but my understanding is that they do not accept United Healthcare insurance. I am considering switching back to original Medicare, which Mayo does accept. I don't know what the wait time would be to see someone there. Thanks so much for your input. Best Wishes to you!

@irenea8
Agreed. Assuming some of the pulmonary nodules might be caused by the psuedomonas, I was hoping perhaps there might be fewer nodules on this scan. Unfortunately, my situation is murky because I think mycobacterium intracellular and bronchiectasis also cause pulmonary nodules. So I don't really know what, if anything, I will learn from the CT scan. Presumably there is a reason the pulmonologist ordered the scan. Hopefully, he will explain how it is meaningful. If the radiologist's observations just say "general worsening," as the last scan in August said, then I am sure the pulmonologist will say I need to start the Big 3 antibiotics immediately.

It is unclear to me whether the doctor ever had susceptibility testing done on my strain of pseudomonas from the lavage fluid from the bronchoscopy, if that is even possible. They have never asked me for a sputum sample. As a patient, I have so many questions and, unfortunately, I have a doctor who does not like to answer questions. They're aren't many options for pulmonologists in my area of NE FL. There is the Mayo Clinic in Jacksonville but my understanding is that they do not accept United Healthcare insurance. I am considering switching back to original Medicare, which Mayo does accept. I don't know what the wait time would be to see someone there. Thanks so much for your input. Best Wishes to you!