Exacerbations * Levaquin * Selective Immune Deficiency! Insights??

@lvnl Levoquin is strong but a good antibiotic if you can tolerate it. I am on it 3 times a week as a prophylactic measure. I also had immunoglobulin several years ago. For me MAC has been the gift that keeps on giving since 2016. I am 76. Irene5

Thank you Irene! Did you think the immunoglobulin helped you? I've been told I will probably need to get infusions for the rest of my life. If you feel comfortable sharing, was there a reason you didn't continue?
I'm close behind you. I'm 70. I've had Bronchiectasis for at least 15 years but until I started having a chronic cough about 3 years ago it was stable and more or less ignore-able by my doctors. Not any more!

Over the years, I've been prescribed Levaquin for pneumonia, so maybe that's why they prescribed it for you. Did it help?

Humira is immune suppressing, so if you can get by without it, that's better for your lungs/MAC.

I take a daily allegra which helps a lot overall as I am allergic.

You won't know if IVIG works until you're on it for 6 months. If I were in your situation I would try it. I'd opt for subq at home, weekly infusions. It sounds worse than it is. A nurse comes to your place and trains you until you are comfortable. I have tried both. IVIG not too much difference in how I felt. Subq keeps a more constant antibody/immunoglobulin level running in your system than the up and down of IVIG. Some people with different immune disorders have great results; SAD (selective antibody disorder) is harder to treat. I'm currently being weaned off it because they think I can be covered by Brinsupri. After travel came home with an exacerbation, so we'll see!

Have you had a vaccine challenge?

If you have more questions feel free to DM me.

Thank you, Scoop. Very helpful. Yes, both times I've had it the Levaquin helped quickly and dramatically.
And yes, I had the vaccine challenge. My antibodies were low to start with overall and barely budged in response to the pneumovax. That's what prompted my BE/MAC team to send me off to the immunologist. My IGG has been low-normal or slightly low when it's been tested over the years. So here I am.
Thanks for sharing your experience with the self administered immunoglobulin. That's super reassuring to me. The immunologist told me the options and right now I'm waiting to hear from the company she works with about what my insurance will cover and so on. I was leaning to having in-home infusions once a month if that's available to me, I suppose because it all sounds so overwhelming! So it's very helpful to know you didn't find self-administering nervous-making. Thanks again.

@lvnl
I assumed my sputum tests would include something like Pseudomonas but it turned out they did not and a special test had to be done for it. Once done (at my request) it turned up very positive for Pseudomonas. Levaquin helping you so much could be an indication of Pseudomonas so make sure you have actually specifically been tested for it.

@irenea8 Thank you! I'm going to look into that!

This is from AI for what it is worth but ask your pulmo of course.

Pseudomonas requires a specific specialized sputum culture order because standard respiratory cultures do not use the selective growth media or prolonged incubation periods needed to reliably isolate mucoid and resistant strains common in cystic fibrosis.

Why a Specific Test is Needed:
Selective Agars: Laboratories must use specialized or selective growth media in a Sputum Culture to suppress fast-growing normal flora and allow unique Pseudomonas phenotypes to emerge.
Extended Incubation: Pseudomonas aeruginosa in cystic fibrosis often grows as mucoid (slimy) or small-colony variants that require longer observation times (at least 24 to 48 hours or more) than routine bacterial pathogens.
Antibiotic Susceptibility: A CF-specific order ensures the lab performs comprehensive sensitivity testing to guide targeted therapies against biofilm-adapted strains.

Other Detection Methods:
Standard Sputum Culture: Might catch high-density or acute Pseudomonas infections, but frequently misses chronic, mucoid, or low-level colonization due to lack of specialized processing.
Bronchoalveolar Lavage (BAL): A more invasive bronchoscopic procedure that samples lower respiratory secretions directly and can be cultured for Pseudomonas, though it is reserved for complex situations.
Throat or Oropharyngeal Swabs: Sometimes used in younger patients or when sputum cannot be expectorated, but these have lower sensitivity than a dedicated sputum sample.
Serology (Blood Tests): Measures antibodies against Pseudomonas aeruginosa to suggest exposure or chronic presence, but does not replace active culture and sensitivity data.

@irenea8 and @lvnl When my pulmonologist is looking for MAC, he orders a 42-day culture; when he's looking for pneumonia, he orders a "cystic fibrosis" test that comes back in less than two days, almost always with a finding of Pseudomonas aeruginosa and susceptibility values. You'd think they'd be able to use the same sputum sample, but nope.

@tcd518
Interesting Toni. My CF sputum test usually takes about a week before they post the results to mychart.

@irenea8 @lvnl at my HMO I do CF respiratory sputum test, rather than standard respiratory sputum test, as the CF version specifically looks for the nasty bugs that tend to show up for those of us with bronchiectasis. Once I moved my care within my HMO to a doctor with experience in bronchiectasis, that doctor recommended this switch in testing for me, and my understanding is my outside NTM specialist recommends the same, i.e. CF respiratory sputum testing as opposed to standard respiratory sputum test for bronchiectasis patients. Every lab may function differently, for instance I have been a patient at NJH and their lab, which is arguably the best if not one of the best in the country, they may not even use this distinction. It wasn’t raised by my doctor there, and their lab certainly gives more details on the sputum testing than the standard labs. My impression is they have their own approach to sputum testing. But if your doctor is using a standard lab, it is worth having a discussion with them about any distinction between CF and standard respiratory sputum testing, and make sure you are getting the most appropriate test for your condition. To clarify, I do NOT have CF, just a whole bunch of bronchiectasis.